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Sjogrens Topics => Living With Sjogren's => Topic started by: wordnerd on May 10, 2008, 05:05:44 PM

Title: Surgery Update... (or look who's right back on morphine)
Post by: wordnerd on May 10, 2008, 05:05:44 PM
Ok inquiring minds (hehe)... I decided my little pity party/freak out attack deserved its own thread, so...

Yesterday I had my surgery to implant phase one of my pee pacemaker (ie the electrodes next to the nerve with an exterior test pacemaker).  I had to arrive at 5am which meant leaving the house at 4am.  I was pleased to discover that this hospital was very prepared to deal with my latex allergy.  Both the pre-op room and the recovery room were already LATEX FREE!!  And they prepped the OR all latex free with out any issue.  That was a big relief.

So in the OR before they game me any anesthesia, they were poking around on the back of my hips to feel where exactly they were going to insert the wire going to the nerve.  This was when I first put two and two together that all three incisions were going to be on the most sensitive spot on my body.  I can hardly be touched there without yelping.  However the anesthesiologist was amazingly awesome.  First of all she had her fellow call me the night before and go over my medical history in detail, so they would be prepared.  Secondly, she knew all about Sjogren's, explained everything she was going to do and why in detail, and was perhaps the nicest most cheerful person I had ever met.  So she didn't hesitate to give me some pain meds, so they could feel around properly without me jumping off the table.

I don't really remember anything after that though I was only in twilight and apparently was able to talk the whole time and answer their questions about what I was feeling from the electrodes and where.

Then I remember someone saying they were done, and then I was in the recovery room getting 3 doses of demerol because I couldn't stop shaking and lots of pain meds.  I apparently spent an extra hour there, but I don't remember.

Then I was back in the pre-op room and they explained some stuff to my mom that I also don't remember.  Then the doctor came and wrote me a Rx for an antibiotic.  He was going to give me darvocet for the pain until I reminded him that I just finished tapering of 15mg Morphine ER a few weeks ago, so he said to go back on the Morphine as needed.  And then I got dressed and my mom took me home!

At home one of the incision sites was excruciatingly painful and my left foot was twitching like mad especially if I turned the external test pacemaker up to a workable level.  Luckily the guy from the manufacturing company who works with my doctor to get it set up optimally called to check on me and he had my mom change the configuration so that it was stimulating a different part of the nerve.  That made the pain way more tolerable and my foot stopped twitching.

However I started to notice last night that my left leg was harder to move than my right.  And by this morning I could barely move it.  My right leg moves completely normally, but if I sit in a chair with my feet on the ground I can barely lift my leg an inch off the ground.  I can't bend or unbend my knee or wiggle my toes really either.  Naturally I was very freaked out by this. 

I paged my doctor and got a call back from the doctor on call.  She said to turn off the current for 2 hours, and it should go back to normal.  After almost 3 hours it hadn't improved at all, so this time my mom called back.  The on call doctor said that even though she'd never heard of this exact issue happening before (apparently a few patients had felt like their leg was kinda heavy... not paralyzed) the nerve was just very irritated, but she's sure that after a few days of having the current it should go back to normal.  She insisted that she didn't think it was very concerning and that there is no way that it's permanent.  She also added that they wouldn't do anything about it now anyway and since I'm coming in for a post op appointment on Tuesday, my doctor and the guy from the manufacturer will be able to access it then if it's not better.  But she said that she was sure it would be (this time).

So right now I'm trying really hard to stay calm and trust that she's right even though she's not my doctor and none of her patients had ever had this happen before.  I'm trying not to freak out about the fact that one of my legs is essentially a dead weight as I drag it along balancing on my other leg and my walker to go back and forth to the bathroom and that I need my mom to lift my leg into bed for me.  I'm trying really hard to believe that this is merely a temporary inconvenience that will correct itself soon since it is only a very extreme form of the heaviness that other patients have experienced.

And there's really nothing I can do about it at this point as I lay here on ice and 15mg of Morphine ER but type this up and try to ignore the incision pain.  Because, though I may be back on Morphine, 15mg is as far backwards as I'm willing to go.
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: quiger on May 10, 2008, 05:12:25 PM
Oh Lauren, I am so sorry to hear what's going on. I was so hoping that the surgery would be successful and with minimal pain and discomfort. Try to rest and let your Mom take care of you.

I'll be thinking of you. Let us know how you are doing when you get the chance.

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: YICKelly on May 10, 2008, 05:13:49 PM
Oh Lauren, I am so sorry.  You said that the manufacturing company man called you.  Do you have caller ID so you can call him back?  If so, I would do that.  Someone better able to know what is going on is needed.  I know when they hit a nerve in my arm, putting in a line, it was a couple of days before I could move it easily.  Good luck.
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: wordnerd on May 10, 2008, 05:26:19 PM
Thanks Quig and Kelly!

I forgot to mention that I spoke to the company guy again today already and he has no clue.  He agreed I should leave it off until I can move my leg again though.  He said he'd call back tomorrow to see how I'm doing...

I will keep you posted.  At the very least it helps me stop obsessing about all the ifs by writing it down.

*hugs back*

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Scottietottie on May 10, 2008, 05:36:51 PM
Hi Lauren

Wow - that doesn't sound too good. maybe your leg feels more than 'heavy' because you have so many health issues and hopefully it will resolve like they say.

I know after I had knee surgery for a partial joint replacement I had a heck of a time doing the physio exercises when there were people 20 years older than me managing fine. Things just seemed to take longer.

Keep us informed.

take care - Scottie  :)
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Patze on May 10, 2008, 05:46:20 PM
Ah Lauren,

I was hoping that this would help put things right for you, wow, talk about coming out of left field.  I sure do hope that tomorrow will bring some feeling/mobility back!!!!
It's nice to see that you're not letting this get the best of hang in there, okay?  

Take care now -

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Jag on May 10, 2008, 07:24:29 PM
I don't know, I'd be as worried and freaked out about it as you are!! Do you have feeling in that leg at all? Is it swelled at all? Do you have pulses in that foot..bloodflow to it? I guess maybe it's the nurse in me, maybe it's because I don't feel really comfortable with them telling you to wait until Tuesday when you're having this much difficulty that they can't seem to explain. Sure, it could be swelling from the surgery pushing on a nerve, but if you put pressure on a nerve and leave it there, it can have a rough time bouncing back. If you have any loss of sensation, any swelling, redness in that leg, or decreased blood flow to your leg or foot, I'd head to the ER. JMO

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: susanep on May 10, 2008, 07:43:06 PM
I am praying for your healing.

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: irish on May 10, 2008, 09:48:19 PM
Lauren, I am with Jag on this one. Anytime you have the symptoms that you are having and someone says "I don't know but other people haven't had this happen" and then try to minimize it and say that it can wait til Tuesday is scary.  "Crap" happens sometimes for some reason that doesn't even make sense at times. Is there any way that any of this "hardware" could slip and cause pressure on a nerve or something similar????

Please know that I am thinking of you. Hopefully your will get action back in your leg soon.  Irish ;D
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: lynnmarie219 on May 10, 2008, 09:57:16 PM

I'm so sorry that you re going through all of this and I hope that by the time you read this you have some relief...if it is the same....I would also not put it off until Tuesday to try to get some answers...especially since it is worrying you so much (and rightly so).

Please take care and let us know how you are doing...hugs to you and your mom for helping you (we are never too old for our moms help are we?)  ;)
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: wordnerd on May 10, 2008, 10:04:22 PM
Thanks Scottie, Patze, Jag, and Susan!  What I would do without the support of everyone here I just don't know! <3

Scottie - I'm hoping that my laundry list of health problems is what's causing my leg issue to be significantly worse.  I already have a lot of pain and inflammation in hip and sacroiliac joint region, so it wouldn't be surprising if I had more severe symptoms from the procedure.  I'm not the average patient let alone average 24 year old patient.  ::)

Jag - Yeah I have feeling in my left leg, but its kinda hard to tell if its any less than normal because I have already have surface numbness on my whole right thigh that has nothing to do with my surgery.  Makes it hard to compare.  It doesn't seem swollen and the blood flow seems okay with the exception of my toes, but I have Raynaud's, so...  It mostly feels like no matter how hard I'm telling my leg to move, there is an equal amount of force holding it in place.  I don't think my local ER would have a clue what to do with me, and the university hospital that did the surgery is about an hour away.  But I don't feel comfortable with her advice either.

I've poked around online looking for any info on this happening but couldn't really find anything useful.  I think I'm going to have to wait it out, but if it gets worse that on call doctor will be hearing from me... no matter what hour it is.

Thanks again everyone for all the support and well wishes!  I'll keep you posted...

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: wordnerd on May 10, 2008, 10:21:02 PM
Thanks Irish and Lynn!

I specifically asked if the electrode could have been dislodged and be causing this and she said no way.  I have had way too many personal experiences with doctors being "sure" about what was or wasn't wrong with me only to be very wrong themselves.  Apparently, there was no way someone my age could have chronic pancreatitis, there was no way I could be anemic, no way I could have sleep apnea, and yet...

I just don't know what to do about it right now.  I feel really stuck.  I can't get a hold of my actual doctor who did my procedure.  I have no desire to wait for hours in the ER so I can have them not understand the complexity of my health situation and have no clue about my procedure and fend off nurses coming at me from all sides with latex.

I guess I could give my uncle/pulmonolgist a call and see what he thinks.  His partner is my GP and the one who referred me to this urologist to get this procedure.

I don't know.  And yeah my mom has been pretty great... it's nearly her day too  ;D

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Jag on May 11, 2008, 07:14:15 AM
Here is a hint that one of my docs gave me when I was having a bad time with my heart and had just waited hours the night before in the ER. She said 'call an ambulance!' They do see you faster, you don't have to sit and wait, and I think that your symptoms warrent it. Just make sure to tell them that you need to go to the hospital where you had the surgery so the doc who did it has privilges there. Of course, this is just a suggestion, but if it's the long wait in the ER that is holding you back, I thought offering an alternative could be of use. Especially when you just had surgery, and you're unable to walk on both legs!

It sounds like you've had issues because of your age, which is the same issues I've had to deal with. When my doc sent me to the ER for an abnormal EKG, some Doogie Howser said 'no one that is 35 can have heart problems'. I wasn't monitored, and he sent me home. I was back the next day with an elevated Troponin and abnormal EKG... slight heart attack... and was admitted. Ambulance that time, and they saw the abnormal EKG as soon as I got hooked up to their monitor. I do remember the driver asking if that guy wanted him to 'run it hot'... and he said 'yeah, there's some heart stuff I'm seeing that I don't like'. I was in the 120's to 130's laying down.. where I normally would have been in the 60's or 70's. It was an experience!

Good luck, and I hope your relative is able to give you some more info!

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: wordnerd on May 11, 2008, 10:37:21 AM
Thanks Jag for the tip!  I'm not sure how far away an ambulance would take me...  The hospital I had surgery at is about an hour away without traffic.  Same for the hospital that all of my other doctors besides my urologist work at.  And the doctor on call for my urologist is so convinced that its nothing to worry about that I just don't know what to do.  I'm going to give my uro's office a call again today and let them know I've had no improvement, and see what they say.  I'm also going to call my uncle and see what he thinks.

In the meantime, my costrocondritis is all flared up today for some reason.  I wonder if I should have been given some extra prednisone for the surgery since I've been on it so long even though I'm only on 5mg every other day now.  I'm also kind of worried that my leg paralysis is really part of my preexisting and undiagnosed neurological issues since I've been having involuntary muscle movements, tremors, and seizures for a while now.

And yeah I've had TONS of issues because of my age.  I started getting sick when I was 18, and now I'm 24.  I've had to change doctors and fight every inch of the way before I found ones that took my issues seriously.

Oh and by the way... I got the results from my CPAP titration study back and discussed it with the sleep doctor.  I apparently happen to be one of the rare few who have a problem with CPAP because I tend to swallow tons of air in my sleep.  (I think its probably because my mouth is so dry... I always swallow a lot trying to get the tiny amount of saliva I have to spread out around my mouth.)  So since I don't have very frequent apneas, but when I do my oxygen drops to dangerously low levels, he decided to have me try just sleeping with humidified oxygen for now and reevaluate in a few months.  So hopefully I'll be getting the equipment for that this week.

Thanks everyone!

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Tamik on May 11, 2008, 10:59:32 AM
I am sending warm thoughts your way and hope you feel better soon.  TamiK

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Cheryl on May 11, 2008, 01:21:33 PM
  I know it must be scary to lose the use of your leg this way.   Surely there's just some swelling at the site of the surgery causing pressure on a nerve.   (That probably didn't make any sense, but it made me feel better to say it!! )  I do hope that you are back to normal soon and the surgery is a success.   Best wishes!
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: stegello08 on May 11, 2008, 04:45:27 PM
I will definitely keep you in my prayers, and I wish you a quick recovery. Try to hang in there, and don't get too discouraged about the morphine. You willed yourself off of it once, you can do it twice. :)
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: genko_b on May 11, 2008, 08:46:14 PM
Wow Lauren:

I'm hoping you can get someone to help with this before Tuesday. Since Friday I've been neck deep in a big event related to our tea school (like a convention of Japanese tea drinkers) that ends next Wednesday, but I've been trying to check in when possible.

I'm not happy about how much trouble you are having with this procedure. It is supposed to help you, not scare you or give you more problems. So sorry for this complication. My fantasy is that we could recruit an advocate for you to manage your care so you could devote your energy to recuperating rather than trying to shag down doctors to answer your questions, and your mother could focus on your home care.

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: kimbo on May 12, 2008, 09:55:05 AM
Hey word,
I've been praying for a course of action to intervine in this recovery complication. It's Monday noon time here in ark and I can't help hoping you are doing better or have found some piece to the puzzle that is giving you relief.
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Care on May 12, 2008, 05:55:28 PM
Hey wordnerd,

Do you have a neurologist?  If you do, maybe he/she can help.  Obviously the nerve is irritated, hopefully not damaged.  But if it is a nerve problem I can't help but think treatment asap will help it heal more rapidly.  And yes, many doctors do not understand the complexity of these illnesses and how they can cause our bodies to react differently to all this.  They had a segment on NBC national news tonight.  They spoke about women and autoimmune illnesses and how they are frequently misdiagnosed.  A Lupus specialist said most doctors are not educated on these illnesses and how frequently they are misdiagnosed.  And yes, mentioned that we are not NUTS!

Please get better!
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: wordnerd on May 12, 2008, 11:10:58 PM
Thanks everyone!  It's good to know everyone is thinking of me!

So I'm posting from the hospital now.  Yay my laptop!

I called my uncle on Sunday Morning and he said I should definately go back to the ER of the hospital where I had the surgery because this is not normal.  Basically they need to figure out what's going on.  So got the ER at around 2:30pm Sunday, got put right back in a room, and got admitted around 4:30am today (Monday).  I had to put my foot down (metaphorically speaking of course  ::) ) with admissions and make them at the very least put me in room with another latex allergic person.  Now I finally just got into my own room, and my nurse is latex allergic, so I don't have to worry about her coming in with the wrong kind of gloves.

Today I saw about four people from the urology department... one of which was the on call doctor from the other night.  She was extremely apologetic (and looked pretty stressed out about the situation).  I also saw five doctors from the neurology department and who doctors from rheumatology.  So far no one is sure why I can't move my leg.  They did a CT that didn't show any bleeding pressing on the nerve, so that's all that's ruled out at this point.

If they decide that this isn't directly from the surgery... either a very odd coincidence or some AI issues triggered by the surgery, I'm going to get transfered the the hospital that has all of my doctors at it (aside from the urologist) because they know me a lot better there.

Right now I'm just trying to hang in there until they figure it out.

Thanks everyone for being so supportive as always!  I hope everyone else had a good mother's day weekend (I know my poor mom didn't).

I'll keep you updated when I can.

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Katybarstool on May 13, 2008, 12:07:14 AM

Well done for getting back into the hospital. Whether it is a 'coincidence' or not, it defintiely needs sorting.

Will be thinking about you and sending positive vibes.

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Patze on May 13, 2008, 03:46:07 AM
Hi Lauren,

Wow girl, you are giving them a run for their money!!!!  Seriously, how are you feeling?  I sure hope that the doctors figure out what the heck is going on...out of left field here, but could it be that you're allergic to whatever material they put in you (I know that you've mentioned that you're allergic to Latex)?

Off the wall here, but I'm winning the war! ;D

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Jag on May 13, 2008, 04:40:11 AM
I am VERY glad to hear that you got back into the hospital! Now hopefully they can find the problem and fix it, no matter what it's related to!!

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Scottietottie on May 13, 2008, 04:31:02 PM
Hi Lauren  :)

I hope they figure out what's happened really soon. You sound as though you're in the best place for it.

Hang on in there.

Good you're keeping in touch.

Take care - Scottie  :)
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: quiger on May 13, 2008, 04:41:51 PM

We are all thinking of you and wishing you the best. I hope they get to the bottom of the problems soon. I must say, you are handling the whole situation better than I probably would. Take care of yourself and please keep us posted.

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Care on May 13, 2008, 07:32:58 PM

awwwwwwww so sorry you are still having problems, but I was happy to hear they hospitalized you!  I thought that was where you belong.  Sounds like a neurology problem to me.  Our "nerves" are not exactly normal! :( Please keep us posted and know that you are missed!  I am looking forward to having you back on staff!  Miss you....
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: genko_b on May 13, 2008, 07:56:36 PM
Hopefully now things will get back on the right track. I'm glad the docs are taking this seriously now, but it is ridiculous that you had to push like this.

Title: A Bit of an Update
Post by: wordnerd on May 13, 2008, 08:42:24 PM
Hey everyone!  Thanks again for all the support and well wishes!

Well after a very frustrating day of mostly not hearing anything or having any idea of what my doctors were planning to do, I finally heard from my urologist.  He spoke at length to my GP (they are really good friends incidentally).  So since I still can't move my leg but it doesn't seem to be directly caused by the implanted electrode my doctors want to transfer me to the other hospital where all my other doctors besides the uro are at.  The plan is to stay there for 7-10 days and get seen my rheumy, neuro, and GI docs who know me well, get a bunch more tests done, and get a bunch of PT to try and get my leg working again.  If we can get some improvement with my leg, then my urologist will try reconnecting the stimulator box to see if he can get that to work for my bladder because right now I'm stuck with a catheter.  If my leg is the same after 7-10 days and they haven't figured out any other reason I can't move it, then I will have the electrode removed and go from there.  Basically we want to avoid having to remove the electrode because without it and the bladder stimulator, I'm probably going to be stuck self catheterizing for the rest of my life.  And at 24, that's a really undesirable option.

So tomorrow I'm moving hospitals and getting a pic line in (I'm already on my 3rd IV... my veins can't handle IVs anymore).  Then hopefully we can figure out what happened with my leg.  We think that something during the surgery triggered it, just not the hardware itself.

Patze - I checked with my doctor and the electrode is basically surgical steel and polyurethane, so its very unlikely that I'm allergic.

My personal theory is that the trauma of the surgery triggered some autoimmune something that was already going on with my legs.  I've been thinking about how much trouble walking I was already having before this happened.  Ever since I was hospitalized for 6 weeks back in October/November I've been unable to walk without my rollater.  My strength has improved a lot but then sort of plateaued and all these months later my legs were still all wobbly and uncoordinated and I've been still having balance issues.  So I'm kinda wondering if something was going on mildly all this time and then flared on my left side when I had the electrode implanted on my left side.

I don't really have any medical info to back this up... it's just my intuitive feeling.  And my intuition about what's been wrong with my body has been pretty spot on thus far.

As to how I'm doing... I'm trying to stay calm and have a sense of humor about the whole situation.  I don't like to think that someday I'll look back on this and laugh.  I'd rather try and laugh about it now and look ahead later.  If there were a guide to living my life I'd entitle it "Don't Panic" (if it weren't already taken) and my most useful item would be a sense of humor.

Now that I know my doctors have a plan I'm not so stressed out too.  I really have a hard time not knowing what's going on (no matter what it is) and not knowing what the plan of action is.  Now I at least have a plan and a timeframe.  My parents are going away this weekend to a long ago planned trip, so in a way its going to be sort of a vacation for me.  Well a really unfun vacation... more of a break from my family.  My sister is home but she apparently she doesn't want to have to come drive an hour to see me.  So whatever...

The only thing that's been hard is that I still have the impulse to call up my former best friend when stuff happens.  It's weird not having someone to call and let know how you are.  Especially since we were best friends for almost 8 years.  And there's been no closure between us.  The last time we spoke she was all excited to tell me about this new boyfriend and that she was in love and she was supposed to come over the next day.  And then she didn't show and never called, and I just had enough of her being flakey and didn't call anymore.  But I still get the impulse to call her and tell her something important.  I don't know.  It's been months now, but that hurt still feels fresh sometimes.  I think if we had a big fight or something it would be easier.

Anyway... I really appreciate that all of you are thinking of me!  It's comforting to know that there's such a supportive group of people waiting for me when I open my laptop... if the hospital just remembers to give me the correct login info for their wireless network :D

Take care everyone!  I wish I had more time and energy right now to keep up on all of your posts, but I am thinking of Sjogren's World and hope you all are well!  I'll keep you posted...

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: stegello08 on May 13, 2008, 09:17:54 PM
Hey Lauren,

After reading everything you are going through, I look up to you. You are going through a horrible ordeal, but you are handling it so well. At your age, you are definitely too young to be going through all this. Well I should say at our age (your 2 years older than me) but you are going through way more than me. I thought I had it bad, but after reading your posts, it kind of puts me in check, so I guess I can quit with the pity parties. Like I said before, you are in my prayers, and I pray you get well quick!

Take care,

~Stephanie 8)
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: wordnerd on May 13, 2008, 09:53:08 PM
Thanks Stephanie!  But believe me... I do have my pity party moments.  We all do... and we're allowed and so are you.  Also everyone's pain/bad experiences/or whatever are relative and equally valid.  It's said that no matter how good at something you are, there's always going to be someone better than you.  Well it works the other way too.

Sometimes I just need to have a good cry and a bit of a pity party to get it out of my system.  I just try not to let them dominate my life.  I also strongly believe that who I am is a product of my life experiences both good and bad, and I rather like who I am so even though life can really be hard sometimes I wouldn't really change anything because that would change me too.  Ya know?

Take care!

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: salsen on May 13, 2008, 10:54:15 PM
Lauren I am keeping you in my prayers.  I hope things resolve well for you and you are able to keep the stimulator in place.  My sister had this surgery done a year ago and is doing very well with the stimulator.  Like you, without it she would have to use self cath technique.  Please keep us updated on how you are doing.  Good luck.
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: lynnmarie219 on May 14, 2008, 04:30:36 PM

Keeping you in my thoughts and prayers!

Hang in there...we are all here for you if you need us! Please remember that!
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: stegello08 on May 14, 2008, 06:09:45 PM

Very well spoken...I could not have said it better myself!


Thanks Stephanie!  But believe me... I do have my pity party moments.  We all do... and we're allowed and so are you.  Also everyone's pain/bad experiences/or whatever are relative and equally valid.  It's said that no matter how good at something you are, there's always going to be someone better than you.  Well it works the other way too.

Sometimes I just need to have a good cry and a bit of a pity party to get it out of my system.  I just try not to let them dominate my life.  I also strongly believe that who I am is a product of my life experiences both good and bad, and I rather like who I am so even though life can really be hard sometimes I wouldn't really change anything because that would change me too.  Ya know?

Take care!

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Tamik on May 14, 2008, 08:39:14 PM
Pity parties are best with a bowl of icecream...  and they are very therapeutic sometimes! :)  Knowing when to end the party is the tough part! :)  Tami K
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: eyeamdry on May 14, 2008, 08:47:54 PM
Lauren, I just read through this whole thread now.  What a time you've been having.  You don't have a chance to get bored, do you? ;D  You are doing an amazing job of handling everything.  Humor is the best and greatest thing we have in dealing with our ills.   I'm sorry you are in such a pickle and hope things get better soon.  Lucy
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: wordnerd on May 14, 2008, 10:17:50 PM
Ack!  I'm stuck in a bureaucratic nightmare caused by the hospital's ridiculous policies.  

Today my right leg started having the same symptoms as my left.  So far its not as severe but I can't lift it off the bed anywhere close to how I could last night.  I also haven't been able to eat or drink enough because my AI pancreatitis is all aggravated.  However, my urologist discontinued my IV fluids between antibiotics this morning which they did while I was still asleep.  They didn't flush my IV before locking it though so by the time I woke up blood had clotted in the whole thing and I had to get a new one.  However my veins have so much scar tissue from past IVs that it took 4 tries to get another one in.  About 30 minutes later I find out that the doctor has stopped my IV antibiotics also and I don't need another IV.  The problem is he didn't put me back on my low dose prophylactic antibiotic either which is the only thing preventing me from getting chronic kidney infections again.. especially since I have a catheter in.

Also I started having episodes of tachycardia with severe cold sweating over my entire body around noon.  And I've been dizzy.  And I haven't had a BM since last Friday.  But I haven't been able to discuss any of this with any doctor because no one ever shows up to discuss anything with me.  They just write orders for the nurses to carry out without consulting me or considering my other medical issues.

Basically I'm supposed to transfer from here (hospital 1) to the hospital all my other doctors are at (hospital 2).  However, hospital 2 doesn't have a bed available for me yet, so I was planning to stay at hospital 1 until they have room for me at 2.  However, I was admitted at 1 by the urology team, but now my primary issues are not urological, so the urology team has no justification to keep me in the hospital for bladder issues.  So they can't bill my insurance for the cost of me staying here under the care of the urology team.

So I asked if they could transfer my case to the control of the neurology team here at hospital 1 in the meantime.  Apparently though the neuro team here doesn't want to do any tests except an EMG which they can't do until 2 weeks after the surgery for some reason.  And so the neuro team doesn't have to take my case on if they don't want to.  They can basically refuse, discharge me, and tell me to come back in 10 days for an outpatient EMG.  I asked if the uro team would have the neuro team come back and talk to me again to discuss them taking over and running some other tests here until I can transfer to hospital 2 and have my regular neurologist pick up from there.

The neurologist did a physical examination again just now.  My quads will be contracting as hard as I can make them and my leg won't lift off the bed.  She concluded that I have muscle weakness and just need out patient PT.  I asked how my leg can go from completely able to move around to completely de-conditioned to the point I can't lift it off the mattress in less than 12 hours.  She said she didn't know, but I'm not paralyzed so I just need out patient PT.  I said obviously I'm not paralyzed but I have a bunch of AI conditions could that be causing it.  She said no.  So if you don't know how my muscle can spontaneously stop working how do you know nothing is wrong?  She said she doesn't know what is causing it but I just need PT.  I asked if she thought it was all in my head because I feel like I'm going crazy here, so if that's the case send me up to the psych ward.  She said no, you just have muscle weakness and need outpatient PT.  So I asked why they hadn't done anything beyond a physical exam and a CT of my hips.  She said ok fine I'll suggest you have a CT of your whole spine tomorrow and then I'll have a social worker come and help you get set up for outpatient PT.  I asked what if the CT shows something?  She said well then we'll talk about it tomorrow.  And left.  So that option is out.

The next option is to stay in the hospital anyway at the cost of $7,000 a day out of pocket.

The last option is to get discharged (with my catheter still in btw) and go directly to hospital 2's ER and get admitted that way.

In the meantime, my mom left for the day and both my parents are supposed to be going out of town for a prescheduled trip early tomorrow morning.  So I'm kinda freaking out about this.

There is one thing I do know... muscles don't suddenly become de-conditioned to the point you can't move them overnight.  So either something else is wrong or its all in my head.  Either way I don't see how PT alone will help either thing.

I'm just so frustrated I want to cry.  I can't seem to get anywhere here with this and I don't see how I can go home with both my legs not working.

My uncle who's a doctor at hospital 2 is going to call the Attending Neurologist and make sure someone competent sees me because he said what the resident who came to see me was useless.

Then on top of that they lost my dinner order and my nurse called and called about it for three hours.  Finally they brought up a tray of the only thing they had left because they were closed.  It was a chicken dish I already knew I couldn't have because it has yellow dye in it and a salad which I also can't eat.  So I had 3 red jellos for dinner.

I'm just ready to scream.  I'm in worse condition than when I got here and they are about to kick me out at 11am tomorrow unless I pay $7,000 a day to stay.  My mom is making a complaint to the administration as we speak.  I just feel so helpless to do anything to get proper care here.  There is no communication going on and the neurology department clearly need their heads checked.

I mean I know my leg problem is really weird but this is supposed to be ranked #2 hospital in the nation... it has a big ad announcing it to the world on every elevator door.  I don't know how they can say I have sudden onset de-conditioning without doing a EEG or an CT of my head or my spine.  And my doctors and hospital 2 had even mentioned a possibly testing my spinal fluid.

Also my mom was horrible on the phone when I called to tell her what was going on.  She wanted me to find a phone number of a person that doesn't exist.  When I tried to clarify who she meant she freaked out at me and demanded that I ask the nurse to call her because I was apparently being "difficult and asking too many questions" and she would get the number herself or she won't help me at all.  I need and long cry!!!!!!!!!!!!

 *primal scream*

Thanks everyone for their ongoing support!  I don't know what I would do without you all!
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Katybarstool on May 15, 2008, 12:03:46 AM

I'm absolutely appalled at the way you are being treated. Our NHS service can be difficult to get treatment from, but no way would someone be treated the way you are.

It seems so inadequate, but I just want to say, hang in there. My heart goes out to you. I wish I could come and advocate for you.

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Jag on May 15, 2008, 03:49:34 AM

As both a nurse and a case manager that has worked for the insurance and also on the hospital side of things... they CANNOT make you leave. Especially in your condition, to discharge home. It is called an UNSAFE discharge, and no one likes to say what rights you have. Not sure what your insurance is, but if you are not walking, they CANNOT force you to go home. You can just park it right there until you can be transfered. Do NOT LET THEM TELL YOU THAT YOU HAVE TO GO OR YOU WILL BE BILLED. This is simply not true. The insurance company is in communication with the hospital to get updates on your status, etc if it's a private company. If it's medicaid, you can be there forever.

I am TIRED of facilities not telling patients what your rights are!! If you are still being told you have to go, then ask to speak to a patient advocate. Every facility has one. Tell them you're not leaving, you're transfering, and that you can't go home alone in this condition (which is now WORSE  not better) and see if they can reach the insurance case manager to call you and discuss this. Please keep us informed. I wish you the best... I just wanted you to know what your rights really are, and that the docs and nurses may say things that aren't true. You have a right to care, and your insurance isn't going to stop payment because you are worse, not better.

Good luck,
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Patze on May 15, 2008, 03:58:26 AM
Hi Lauren,

Jag's right, go to the internet and check out the hospital's patient advocate rights (that a lot of hospitals put out there - I guess to make them look better) and fight them on this.  This is wrong on so many levels!!!  Oh, and please ask for the patient advocate as soon as absolutely possible!!!!!

Please keep us updated, okay?

Take care now -


Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Linda196 on May 15, 2008, 04:13:39 AM
{{{{{Lauren}}}}} Biggest hugz I can find on the way!

Lauren, has anyone mentioned the (remote) possibility of transverse myelitis? Especially now that your other leg is becoming involved, I think it might be worth asking about.

I think that once again, you may be the victim of a reverse age're simply too young to have all these problems, so your doctors sort of block them out!

I hope the scream helped (it always helps me) and a good cry is probably long over do. "Strangeling" a pillow (that you have named after a particular antagonist) is also very therapeutic!
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Mark54 on May 15, 2008, 07:47:53 AM
     Linda makes a great point, have they checked for Transverse Myelitis? My wife has this and it was caused by Sjogren's. It does happen in rare cases. Chele will be numb from her chest to her toes on her right side probally for the rest of her life. Please have it looked into. The earlier DX'ed the better.

Here is a web page that will explain TM:

God's blessings,

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: genko_b on May 15, 2008, 07:54:41 AM
Lauren, this is just crazy, the whole business. It is inconceivable to me that you are going through this. If I were a hospital administrator, and a patient had lost use of not just one but two legs in conjunction with a procedure that my staff had performed, I would be doing everything possible to find out what happened and fix it.

Reading through all of this, it sounds as though your uncle is your best advocate in the vicinity. Has he been able to connect with neurology yet? Can he talk to the patient advocate? I'm noting that your deadline of 11 am today is fast approaching. Is there anything any of us can do to help?

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: wordnerd on May 15, 2008, 12:38:56 PM
Ok... well things seem to be back on track after the emotional train wreak yesterday.  My uncle got the resident on the phone and basically told her that he will not allow me to be released until I have a diagnosis of what is causing my muscle weakness.  He also chewed her out for not knowing if I had a full CT of the spine yet or any other imaging tests.  He said he wants the head attending to see me and expects a prompt report from them.  He doesn't even work here!  But it worked like a charm. 

The head attending neurologist showed up this morning with the horrible resident in tow.  She was very nice and did a very through physical exam and then said that it seems like I'm having a problem with my proximal muscles or motor neurons or both.  She wants to do an EMG as soon as possible, but it might not show anything yet, so I'd have to get it done again in a week in that case.  She also wants to get a CT of my bones and connective tissues in my pelvic area because I have so much tenderness there she said I might have an autoimmune related issues with the connective tissue which would affect my leg muscles.  She mentioned amyotrophy as a possibility, but needs to do more tests first.

She also wants to talk to the uro people about the placement of the electrode because it made my big toe twitch on one setting which might suggest it's not in the right place since that nerve isn't anywhere near where the electrode is supposed to be.

On top of that my parents called up a bunch of people in administration and complained.  They assured them that I wouldn't be discharged like this and that they would make sure that I'm taken care of until I'm transfered.

Also a bed might be opening up to at hospital 2 later on today.

So everything is under control now.  A lot of unnessesary stress was placed on me though, but the attending neuro and a social worker and the charge nurse all said that I should have never been told that and placed in that position.

By the way I have a primary private PPO insurance and Medi-Cal as my secondary.  Thanks everyone for your support and good advice!  Its hard enough trying to keep track of my health issues when I'm in the hospital, but adding this mess is just ridiculous!  Thankfully it seems to be resolved now for the time being.

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Katybarstool on May 15, 2008, 12:44:47 PM

That is wonderful news. Someone listened to our prayers.

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: genko_b on May 15, 2008, 12:46:04 PM
Yes, well finally you are starting to hear something that makes sense. I was about to get on the phone myself and give someone a piece of my mind! I'm glad your uncle was able to get through to them.

Since I am having similar, although milder, symptoms to yours (taking a long time to pee, muscle weakness in the whole pelvic area and so on) I will be very interested to learn what they find out about your situation.

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: wordnerd on May 15, 2008, 12:51:27 PM
Thanks Katy!  

Hehe... I can just imagine some hospital operator getting a call from you Genko.... "I'm sorry we don't have anyone named wordnerd here..."  I'll keep you posted about what happens.  I hope I find out something helpful.

Man... I'm sooooooooo tired from yesterday.  Between all the stress and the phone calls and then I couldn't fall asleep or even stop crying until 3am.  I'm waiting for my lunch to show um and trying to keep my eyes open.

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Tricia281 on May 15, 2008, 01:08:46 PM
Gosh Lauren, this is overwhelming!  I don't know how you the energy to write but guess we all do what we can to keep going and this is obviously your way.  Take care and wishing you positive thoughts!

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Scottietottie on May 15, 2008, 02:19:27 PM
Hi lauren  :)

I'm glad things seem to be resolving. It sounds like you had appalling treatment. How sad they couldn't behave better without getting a doctor from another place to sort it.

I'm glad that at least one stress is away although you must be very stressed when you can't move your legs and no one can tell you why. Hope that resolves too.

Take care - Scottie  :)
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: wordnerd on May 15, 2008, 02:44:49 PM
Thanks Trisha and Scottie!

Yes writing it all out is very cathartic for me.  Once I get it all out, I can stop obsessively thinking about it.  I'm obviously still very stressed out about my legs not moving, but I'm just trying to keep myself busy and distracted with other things and sleep in between.

I'm just glad that I finally saw a neurologist who thinks something is actually causing my leg problem and who could think of several possible diagnosises of the top of her head.  It's hard not to doubt myself when everyone is basically writing me off.  I keep testing and retesting if I can get my legs to move, but I keep coming to the conclusion that if it was all in my head I would have accidentally moved my leg in my sleep or involuntarily when I wasn't paying attention by now.

I just can't wait to get back to my normal hospital with my own doctors.  I've already spent 10 weeks there in the past year and its not perfect but at least I have doctors I know and trust there and know how to navigate the system when problems arise.

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: lynnmarie219 on May 15, 2008, 05:18:10 PM
((((((((Lauren))))))))) More hugs for can never have too many!

I'm glad things are starting to resolve for you....and it will be even better when you get to the next hospital and start to get some answers and treatment if needed.

Please know that you have alot of people in your corner sending lots of positive thoughts your way!

Keep us posted when you are able!
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: ccfbarb on May 15, 2008, 06:03:06 PM
Hi Lauren,
I just got done reading your whole thread and am amazed at what you are going through!  The leg thing is very disconcerting, but I had sudden onset leg weakness last summer and every neurologist I saw could find nothing wrong.  I felt like I could barely walk.  The weakness affects the proximal thigh muscles and I still experience this leg weakness when I'm overtired or having a flare.  My new neurologist says my SJS is affecting my CNS.  All my EMG's came back normal.   Of course, yours seems to be connected to your procedure, which definitely confuses the issue.  Anyway, I just wanted to add my support and as a CT tech, tell you that if they are trying to look at your connective tissues, it sounds like you need an MRI, not a CT.  A CT will be able to see your bones well, but an MRI would probably give them more info and you less radiation!!!  Well, I suppose your doctors know best...ha ha!  Keep up your good spirits and I will be praying for you!
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: wordnerd on May 15, 2008, 08:46:53 PM
Quick update...

I'm at hospital 2!!!!  Yay!

My neurologist already stopped by... he's ordering and CT of the rest of my spine, a baseline EMG (to compare with another in a few weeks), labwork, and maybe a spinal tap.  I can't have an MRI with the bladder stimulator still in.  The goal is to try and fix my leg problem and have the bladder stimulator work for me.  If I have to have it removed of course I will.

Now I'm trying to get my meds and everything settled here (no thanks to the misdocumentation from hospital 1).

Let you know more when I get a chance...

Thanks everyone for their continued support!  I really appreciate it more than you know!

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: quiger on May 16, 2008, 04:16:55 PM
That's good news Lauren. I hope everything gets sorted out now and the docs can help you mend. This sure has been a frustrating time and definitely not good for you.

Thanks for the update. We'll be thinking of you.  :)

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Tamik on May 16, 2008, 06:25:32 PM
You inspire me...I am amazed by your strength and ability to advocate for yourself.  You are such strong woman.  :) 
Tami K
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: wordnerd on May 16, 2008, 07:08:42 PM
Busy 24 hours...

Midnight - CT of spine

Morning - EMG and Spinal Tap (got horrible nerve pain and a kick reflex in my left leg upon needle puncture...  pressure was apparently over 300 and they drained it down to 210 before I got a migraine so bad they had to stop... haven't been able to sit up in bed since)and two urine cultures (so far I know my pee is green and has blood and protein... very odd)

Afternoon - Distracted myself by going on a mini crusade against the hospital's new verbal only menu policy.  Between the pain and the pain meds and my already nearly impossible allergies and eating restrictions its ridiculous to refuse to provide me with a written menu.  Made official complaints on the behalf of myself and others with as complex food issues... not to mention the hearing impaired!  You should have seen the blank look on the floor's food manager's face when I brought up having verbal only food menus for the hearing impaired... "Uh well we just changed to this and we haven't had that problem yet."  I told her that a major research hospital like this most certainly will.  The fight went right out of her.  Procured written menus and an official complaint form to go directly in to the hospital's food director's mailbox.

Evening - Having waited for the ever elusive pain management consult to show up all afternoon, named dropped my pain management doctors name everywhere I could think of.  Recieved phone call from her, adjusted pain meds, and a promise to come see me tomorrow (a WEEKEND  :o 8) ).

Now I'm exhausted, on four hours sleep for two days in a row and napless, still in pain waiting for her new orders to make their way from her phone to my nurse to my chart to the pharmacy to my nurse to me.

Thanks everyone!  I can't wait to get through this and back to reading your posts!  This site and all of you inspire ME!


Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: genko_b on May 16, 2008, 09:37:01 PM
Keep up the good fight! I can't imagine how they think a population of folks on pain meds with tubes going in and out of them can focus enough to retain an orally transmitted menu. And who would want to repeat it to everyone anyway? I suppose it is meant to save trees by not printing all those menus. . .

This has been one of those experiences that would make a great book some day, but is a nightmare to live through. Glad to hear at least some things are starting to sort out. It's been pretty wild.

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: wordnerd on May 17, 2008, 03:36:35 AM
Thanks Genko!  I've had a horrific time trying to get my nurse to get me my pain meds.  But I'll have to post about that later... right now it's just after 3:30am.  I finally got enough pain meds to control my pain about 30 minutes ago.  Just popped online to see if I had any replies that would help calm me down and make me feel better... so thanks for posting.  When I have a really bad day, it helps so much to be able to post about it on here and know that there are people who care about me waiting to read it and give me the unconditional support that is so lacking in the rest of my life right now.

Well I'm off to sleep (I hope!).  I'm on a ton of morphine... I wonder what I'll think when I read what I wrote in the morning cause I'm sure I won't remember. hehe

One more thing... I've been thinking about this thread title and it doesn't really fit anymore... I was thinking I'd change it to "Wordnerd's Hospital Adventure... a serialized account of post-op mishaps and mystery and more".  What you you guys think?  I wonder what I'll think in the morning  ;D

Just kidding... two more things... has anyone used CarePages (  My hospital sponsors it and it looks like a neat tool for times like this.  I know how pathetic this is going to sound but... I honestly don't know if anyone I know (besides all of you) would actually take the time to use it to keep up to date with my progress  :-\  Thoughts?

I feel really bad I'm so behind on everyone else's posts!  I wish I could be lending support right now instead...

I'm thinking about everyone though and I hope everyone is doing ok!

<3 Lauren
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Tamik on May 17, 2008, 07:10:35 AM

You are lending support to many people just by sharing your adventure.  Check out how many people have read your post!  378 as of right now....  We are seeing the strong woman in you, even if you don't feel strong,  who is enduring a lot, but is willing to trust us enough to share her story with us. That makes me feel positive, because I can see that if I ever need to turn to someone for encouragement and support, it will be there for me in this forum.  Right now, focus on accepting the love and support from all your sjogies friends and continue to share your adventure.  We are holding your virtual hand through this ordeal and will be there to celebrate when it is over!  :) Tami K

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: mompain on May 17, 2008, 06:48:03 PM
I hope things are better with you right now.  You have certainly been through an ordeal.  Make sure to keep us updated about the pain meds and all the other problems you are having.  You are in my thoughts and prayers.
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Pooh on May 17, 2008, 10:01:46 PM
Hi Lauren,
My goodness gal you sure have had a terrible time with not one, but two hospitals.  I can't imagine coping with all of what you have been through.  You deserve a medal and a lot of applause.  Bravo!!!

I haven't been around as you know, but I have been checking in now and then to see how you have been doing.  I pray this mess gets straightened for you SOON.  I am so sorry you have been through so much unnecessary pain and insensitive doctors.

Thank God for your uncle and his phone calls.  Hugs to him also.  Please hang in there kiddo, there be better days a coming. 

Hugs and God Bless,
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: kimbo on May 18, 2008, 02:19:52 PM
Hey Word,

How bout  "The Chronicles of Wordnerdia" as your new title.
I hope your doing better. Sounds like that hospital will be a better place when your thru with them.
I will continue praying. We will all be so glad for you when all this is resolved.
God bless you, kimbo
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: stegello08 on May 18, 2008, 04:43:23 PM
I think "The Chronicles of Wordnerdia" is a great title
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: lynnmarie219 on May 18, 2008, 04:52:10 PM
Still thinking of you and hoping you are getting some well needed rest and some long overdue answers!
Title: The Chronicles of Wordnerdia
Post by: wordnerd on May 18, 2008, 06:53:53 PM
Kimbo!  Great title idea!  I'm trying it on for size on this post  ;D  How does it look?  (btw I can't wait to get out of here and go see Prince Caspian!!!)

Tami - Thanks for reminding this recovering perfectionist/care-taking personality that it's okay to need and receive support sometimes myself.  Sometimes I really need reminding.  Thank you also for reminding me that there are many ways to support others... I hope that by sharing with everyone here others will feel that when they are in need they will always get support here too and if anyone is going through or has been through similar experiences I hope that they will feel less isolated and alone in those experiences.  I have been linking right to this thread from my email lately so after you mentioned the read count I went and checked it myself... wow.  I had no idea how much this tread was being followed.  All I can think to say is thank you thank you thank you.

Thanks mompain, stegello, and lynn for your continued support!

Pooh I know you've been dealing with more than your share with hospitals lately also!  Thanks so much for taking the time to post!  I hope you and your hubby are doing ok!

And yes I don't know what I would do without my uncle!!!  I wouldn't even have the doctors I have without his help.  I think that anyone dealing with complex and mysterious chronic medical issues needs to get themselves a well respected and connected doctor in the family ASAP :D

I looked back to see when I last posted.  I can't believe it was only a little over 48 hours ago... it feels like a month.

I've had a really traumatic 24 hours.  I will just briefly summarize because I'm am still trying to process what happened, and I already took three hand written pages of notes on what happened for documentation purposes.

Basically my pain doctor called me at around 4pm Friday afternoon.  I told her how bad my pain from the spinal tap still was.  It basically was double what my last pain scale number ten had been (the pain of an acute flare of my AI pancreatitis followed by when my gall bladder was inflamed, infected, and letting stones escape into my bile ducts at pain level 9).  By the time she called the nerve pain in my leg felt better but the spinal tap migraine had spread to the whole back of my head and all the way down my back including the whole tap site which also hurt terribly.  She said she would call in the significantly increased pain meds after she got off the phone with me.

I waited 20 minutes to give her time to call and have the orders recorded.  Then I asked my nurse for them and she said she didn't know anything about it yet.  This continued until the shift change at 7pm.  After the shift change I finally got my night nurse to come in and he finally had the orders except all the orders were contradicting themselves except for the 4-6mg of IV morphine for break through pain.  (I later found out that my doctor had accidentally called in the wrong pain med which made the orders extremely unclear and they needed to be rechecked with her.)  My nurse gave me 4mg IV to start and I could have 2 more if that didn't work while he called for her to verify the two oral pain meds.

The IV morphine barely took the edge off.  I had been using every non-pharmaceutical pain management trick I knew to mentally endure and relax through the pain already for about 9 hours at this point and was getting to exhausted to concentrate enough to continue (some other time remind me to write up a thread with these awesome techniques btw).  So I started pushing the call button for the nurse at 10 min intervals.  After about 40 minutes I began asking for another nurse to come and give me the other 2mg if he was too busy and finally after 50 minutes I begged for the charge nurse to come.

So about 10 hours after the spinal tap (or around 9pm) I got the last two milligrams.  The charge nurse was very alarmed at my pain level and checked my tap site for leakage or bleeding but it was fine.  She then went to investigate if my nurse figured out the oral pain meds.

Then my nurse came in making excuses and annoyed I had paged for him so often.  Then.... well basically he never asked why I was crying hysterically at this point.  He sat up the head of the bed and continued to do so as I screamed in agony louder and louder begging him to stop.  He didn't even seem to notice.  He only angrily told me I had to sit up to take my night time meds.  I laid the bed back down (if you have severe headaches after the a spinal tap they tell you to lay flat because it gets much worse the more upright you are).

I took my night meds he handed me and noticed an orange pill I didn't recognize (this is especially dangerous for me because of my severe yellow dye allergy.... everything that isn't white has to be checked for yellow dye... mistakes result in anaphylaxis).  Still crying I asked what it was and said it needed to be checked for yellow dye (he was my nurse the previous night and we had been through this with all my evening meds already).  He told me it was a pill I provided, but it wasn't.  He then demanded that I tell him which one it was.  I couldn't obviously since he took them out one at a time.  He continued this way until I screamed and cried for the charge nurse.  She came in and I explained the pill issue and she suggested I take one of my xanax to calm down while went to go get the pharmacist to figure out which pill it was.

Then my nurse reluctantly retrieved the xanax bottle (I had to take mine from home because theirs had yellow dye).  He then wanted to know the exact number of pills left my half used bottle.  Then he wanted ME (still crying in frustration, fear of him, and pain) to count them for him.  Then he wanted to count them together.  When I said I couldn't do any of those things he left to go count them w/ the pharmacist.  I asked him to get the charge nurse right away first.  He came back and said she was busy and what did I want.  I didn't care anymore at that point and said I wanted another nurse because I couldn't understand how he could not even seem to notice that I was crying in pain, that I screamed and screamed when he sat up my bed and didn't even notice or care, and that he wanted me to count out how many anxiety pills I had in a partially used bottle while I was hysterical and still in pain.  He left and I haven't seen him since.

The charge nurse came in and I told her what he had done to me and demanded someone else and asked about my oral pain meds.  They still weren't straightened out.  It was now 11pm... 13 hours after my spinal tap.  She left to go page the on call emergency pain specialist.  I called my mom and she got off the phone to page my doctor but got he on call person first.  Then he talked to the charge nurse.  Thankfully he was in the hospital.  He came up talked to me, looked at my chart, called my doctor to clarify, and wrote me a hefty dose of pain meds to bring the pain down after soooooo long.  I got the meds at around 3am and finally got relief after the most painful 15 hours of my life.

That's the short version (amazingly).  I posted that post after I felt better and read a bit to calm myself down.  Then at around 5am I finally was relaxed enough to turn out the light and sleep.

I rolled onto my side for the first time since the spinal tap and pulled up the covers behind me.  I felt something wiry that wasn't there before.  I felt around.  Realization dawned and I began crying and I tried not to move and feel around to the nurse button asking for the charge nurse.  I asked her to verify that my bladder stimulater wire was no longer taped securely to my body and that it was hanging by a thin wire.  I had her tape it right where it was so wouldn't rick pulling out of the place it was surgically implanted... or at least any further out.  I asked for another xanax and tried to stop crying with despair that this whole horrible experience since the surgery might be for nothing.  Totally pointless suffering because a stupid lumbar puncture tech removed some bandages to do the tap and didn't put them back where he found them.

I got about an hours sleep.

A few good things to end on.

Right after the spinal tap a volunteer walked in to give out info about services volunteers performed.  I couldn't see her but I recognized her voice from my last hospital stay here.  She saw that I was crying and in pain and asked if it was a bad moment and should she come back.  I said okay she could tell me the info and explained I was just waiting for my pain meds and ect.  She asked if I wanted her to hold my hand for a while.  I said yes.  She sat with me for almost two hours and help my hand and comforted me until I was ready to rest a while alone.  It was the nicest most personal thing an essential stranger had ever done for me.

Yesterday my sister came to visit me.  She brought me a ballon and a book of magnetic board games and DVDs to watch on my laptop.  And most importantly her company.  Later that evening her best friend (the 3 of us hang out quite frequently) was nearby with her parents, so they dropped her off to visit me and my sister.  My night nurse was extremely cool and let them stay as long as I wanted as long as we weren't loud and bothering any other patients.  So we talked and laughed and they told stories from their just finished year of college until midnight.  It almost felt like normal.  Like we were just hanging out in my bedroom instead of my hospital room. (My sister drove her friend home on her way home.)

There's tons more I could write but my dinner is waiting...  I have no appetite but I'll try to eat a few bites of everything and save room for the chocolate cake :D

I feel better having typed that out.  Even the abbreviated version.

*sigh of relief and lots of hugs*


EDIT:  Before you ask... I have made an official report to hospital administration and someone is coming to my room to talk about it with me later.  I'm considering if I want to press charges.
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: kimbo on May 18, 2008, 10:13:28 PM
Hey Word,

I'm keeping up with your Chronicles. But I am reluctant to admit that I'm still puzzled with the   Bladder Stimulator/Pee monitor/Pee pacemaker  and where all this problem began, as I am still not educated with the bladder problems in relation to SJS. Is it pancreas complications?
Don't answer this unless you feel like it.

In my minds eye I am holding your hand.   In my deepest prayers for you-  may you feel Gods arms around you.  kimbo
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: wordnerd on May 19, 2008, 12:19:25 AM
Kimbo - When I read the first part of your post I had to laugh at how side tracked I've become from the original issue. Oh dear.  Thanks so much for your continued support!  It's been hard having my parents out of town with all of this going on, but I keep coming back and reading everyone's replies when things seem to be going all wrong and I'm feeling very upset and I instantly start feeling all warm and fuzzy and loved!

Ok here's my theory on the matter of "so what does the bladder stimulator have to do with all of this anyway?"

I've been taking a long hard look at my level of functioning since I was last hospitalized back in Oct/Nov for 6 weeks.  It's been a pretty lengthy time to allow for recovery and yet even before this surgery happened I was still only able to walk short distances with the help of my rollater (its a 4 wheel walker basically).  I'm way way stronger than I was but my progress in recovering my ability to walk plateaued a long time ago.  I've asked my doctors about this a lot of times over the last several months and they all said I was still extremely reconditioned.  I wanted to believe this but I never really did but I really wanted to so I didn't consciously allow myself to analyze it until the aftermath of the surgery forced me to.

Looking back I see that when I'd walk around my room without the rollater I couldn't pick my feet up off the floor and take actual steps.  I just shuffled.  So basically I've been having leg movement problems for a pretty long time now.  The trauma or stress of the surgery just made it way way worse, but basically I'm having the most difficulty with the same two things required to take steps and walk... the ability to raise my leg up from the hip and extend my lower leg up when its bent at the knee.  Now its so pronounced I can't even do it in bed when my legs aren't baring weight.  I can still do other movements pretty normally.  For instance, my strength is almost normal is I lock my knee and ankle and rotate the whole leg pointing my toes apart and together.

So what does this mean is the actual cause?  I don't know but I'm pretty sure it wasn't caused by the surgery.... just made worse.  It's not that unlikely that my peeing problems and leg problems have a common underlying cause.  Through my abnormally high spinal fluid pressure and I still don't know what it means, but... it must mean something.

I'm hoping that this seemingly devastating and unexpected result of a simple procedure will really be a blessing in disguise.  If there is an underlying problem that was there all this time but really mildly who knows how long it would have continued to be written off as deconditioning and fatigue.  I'm hoping that this ill-fated bladder stimulator surgery will result in me getting diagnosed and then treated for what ever it is way sooner by making it become so apparent it had to be looked at more closely.

So that's my theory.  My neurologist thinks that it makes sense and that I could be right.  Hopefully the tests will tell soon.

Some other medically noteworthy things going on... My last urinalysis was fine, but my pee keeps alternating between green and yellow.  I woke up with horrible chest pain in the wee hours this morning and then spiked a fever this afternoon.  So I got to get a bunch more blood drawn (and she forgot to do one tube out of 10 or so and then had to stick me again!)  My arms are polka-dotted with bruises of all the blood draws and the 5 IVs so far (since they hardly ever last 24 hours and the bruises from failed IV attempts) and when spiked the fever my doctor finally agreed to put in a pic line tomorrow morning and ordered a EKG and chest x-ray to check for pneumonia.  That was early this afternoon but I haven't had the xray yet.

Today my clinical partner (nurse assistant) came in with latex gloves on and had to point and say "you have latex on.... latex gloves... latex LATEX" over and over for 30 seconds before the meaning of my words penetrated.  At that point I couldn't handle the anxiety of the latex anymore.  I haven't been able to relax enough to take a nap since I've been here because I'm afraid that someone will come in and get too near me with latex because I'm not awake to scream LATEX at them until they leave and I'll wake up to the sensation of my airway closing with anaphylaxis.

So I called the charge nurse and pointed out that I've been accidentally exposed to latex in this hospital alone 3 times in the past... all of which trigger anaphylaxis and both of the times it happened in my room it was because someone who knew I had the allergy accidentally grabbed the wrong gloves from the vast collection of latex offerings scattered around the pod leading to my room.  And I can't even count the near accidents that were only prevented because either I or a family member fended off the seemingly endless stream of people trying to kill me via latex glove or thermometer or whatever.

I told her how unsafe I feel in the hospital as a result.  I told her how previous attempts to keep latex out of the whole pod of rooms and how they were thwarted because some staff refused to use non latex on all the patients in my pod of rooms (oh no we might prevent others from developing a latex allergy too... that would be horrible!!!!) and even when we cleared the whole pod of boxes of latex gloves they just were restocked full of latex gloves the next day by maintenance.

Apparently I picked the right day and the right charge nurse to put my foot down with.  I asked that at the very least could she make sure that all of the floor staff know they can't even enter my room with latex even if they aren't going to touch me and just need to get something and then accidentally knock over my walker and then stoop down to pick it up with their latex cover hands of death before I can stop them.  Well she took on the challege and took all the current stock of latex gloves out of the cabinets, then she called the division in charge of stocking and ordered up tons of nitrile gloves (latex-free) in every size and told them to only stock those type in my pod from now until I leave.  Then she put huge signs all over all the doors in the pod stating not to stock latex gloves in there.  Then she put signs all over the whole pod area that said that no latex could even enter that pod which leads to all of the rooms nearby (mine included obviously).  Then she passed on orders to the next charge nurse to inform all the staff at the shift changes and to keep my pod of rooms completely latex free!

We'll see how it goes... but maybe tomorrow I'll even try to take a nap tomorrow (but I might have to put up bells that ring when the door opens like in stores to alert me... or rig a bucket to fall when the door opens dropping little papers that say latex free all over the head of the person entering).  When I get better I think I'll start a special interest group to petition the FDA to ban the use of latex in all medical products and settings.  After my pod went latex-free today, one of the nurses said to me "You're going to put latex out of business."  I replied, "Latex has no business being in a hospital."

I don't know if my comebacks are snappier on morphine or if it just seems that way.  ;D

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Jag on May 19, 2008, 10:42:38 PM
I doubt I could keep up with you with all you're going through! Just keep on with advocating for yourself to keep yourself safe. I had noticed that hospitals aren't very sensitive to individuals needs... including the last time I was there. I don't know if it's staffing levels, or if it's just lack of consideration. Keep on moving, girl, you make me proud!!

You have been through so much, but you just keep on going. It will all be OK in the end. You are very much thought about and cared for. I wish you the best.

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: JannaLee on May 20, 2008, 05:45:53 PM
Hey punkin,

We are all here reading your terrible (but sadly all too common) hospital saga and worrying over you and loving you and wishing to be there to handle a couple things with a trusty baseball bat!

That is the only problem with our "virtual" friendships!  We cannot hop in the car (with a trusty baseball bat) and come to your rescue!

Please keep writing all this out to us again and again if you need to.  We offer to you affirmation and validation and maaaaany shoulders to cry on.

Janna Lee

P.S. Your comebacks are always snappy!  But especially so when on Morphine!
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: mompain on May 20, 2008, 09:27:43 PM
I think of you often and all the things you are going through.  I pray that things will get better and that they will figure out what tis causing the problem and know how to fix it.  

Your hospital stories sound like something in a make-believe novel, even though they are true.  I personally think you need to take your experience and contact a publisher about writing a book.  You definitely have a knack for it and I believe you could have a future as a writer with your wit and way of making even the most horrible of situations interesting to all who read them.

Take care of yourself and you will remain in my prayers.
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: wordnerd on May 21, 2008, 10:48:55 PM
Thanks Jag, Janna, mompain, and everyone else who still following along!

I'm feeling kinda blah right now.  I've been waiting around the last few days... for the test results to trickle back in and stuff.  My normal GP gets back into town tomorrow so I should be seeing him tomorrow or Friday.  It looks like I'm going to get a much coveted spot in Rehab Unit.  The doctor who runs that floor of the hospital came and saw me twice.  First to evaluate me and today to let me know that I'll be moving up there once my insurance approves it.

I'm hoping that getting into the Rehab Unit will really help.  It's still like being in a regular hospital room (all my docs can come see me, run tests, whatever) but you get at least 2.5 hours of physical/occupational therapy a day, so I can start getting my legs working even if we don't know what happened to begin with yet.

I'm just really bored and lonely.  My mom came yesterday for a few hours.  She didn't come today.  She's supposed to come tomorrow.  I've been at this hospital almost a week and she's only been here a few hours.  I guess the novelty of me being in the hospital has worn off between the first two long hospital stays.  I guess now on stay number three she's not planning on coming on a regular basis.  She said that she had errands to do today and that my sister wanted her to watch TV at home with her tonight.  I guess I kinda had thought that since I had said it was okay for her and my dad to go on their already planned vacation for five days over the weekend that when she got back she'd be here most of the time.

I was mostly looking forward to some sleep since someone else would be able to watch the door for latex attacks.  Oh well.

I guess after all these years I'm still setting my expectations for my family too high.  Oh well.

I'm just bad at waiting I guess.  Not a patient person.  I can learned just about anything.  I'm like a sponge.  But I can't learn to be more patient.  I wish we just knew what was wrong, so I could set my sights on some sort of treatment plan.  Or have some idea when I might be getting out of here.  I feel like I fell into a void where the minutes and hours and days blur together.  I stare at the date on my wipe off board all day long, but if I closed my eyes I couldn't tell you what it is.  It's a good thing my name is written on there too.

Like I said I'm feeling really blah.  It's amazing to me how supportive everyone on this site has been.  When I look at the view count, I just can't believe it.    I don't know how to say thank you enough to all of you who have been here for me even though we've never met in person.  It means so much... especially since I have such a lack of in person support.

If I'm going to feel crummy and lonely and alone, I just wish I could do it in my own room.  I'm sure I'll being feeling less blah tomorrow though.  And if not... oh well.
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Katybarstool on May 22, 2008, 12:15:44 AM
Hi Lauren

I really feel for you. The rehab unit sounds a brilliant idea. Just be careful not to overdo things.

Being a mum and knowing what your daughter wants must be really difficult (I only have sons, and they are simpler creatures!). I was having some surgery two or three years ago, that only entailed one night in the hospital. My mum would have found it difficult to get there, so I told her I didn't need her to come to see me. This was also beause I knew I would be sleeping the effects of the anaesthetic off, and wouldn't be very sociable. She looked a bit upset, but carried on the conversation BUT, after I arrived home, she didn't come to see me at all in the two weeks I was recovering. I found this really hard, but realised she had taken my 'no visit' comment quite literally, and thought I didn't want to see her!

So, the moral of my story is to give more explanations. It may not be the same for your mum, but I just thought I would let you know how my mum felt.

It's a cold grey morning in Yorkshire today. We had 'summer' a couple of weeks ago, and it lasted a whole week. I just hope we will get some sunshine again soon. I think I am solar powered, and definitely need some.

Speak soon.

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Patze on May 22, 2008, 03:43:06 AM
Whew, girl!  I've been keeping up with it all and I so feel bad for you...have you been able to see a patient advocate by any chance (forgive me if you have, my short term memory is really bad these last few weeks)?

Have any of your tests come back yet?

I'll keep you in my thoughts, and hey, hang in there, okay? 

Take care and hopefully the rehab section will be tons more friendly for you...

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Tamik on May 22, 2008, 08:22:25 AM
Have you talked to your mom and told her how much you need her?  I have learned that if I speak my heart, then usually it works out well. If I don't, then I am dissapointed.  Maybe your mom is scared too.  Maybe she is having a hard time seeing you in pain and suffering.  Talk to her.   She needs to hear that you need her and want her there.  The worse that can happen is that she says no - and you are still where you are.   Life is too short not to speak your heart. :)  You amaze me.  I am in awe of your strength.   The PT will really help make you feel more alive. 
Tami K
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Shari on May 22, 2008, 04:28:02 PM
Lauren~~I have not been able to be on a lot lately and have not read this post in it's entirety but I will as soon as possible.  I get the gist by peeking here and there and wanted to let you know that i am thinking of you.

If i were there I would bring you a beautiful pink rose to brighten your day~~Love  Shari
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: JannaLee on May 22, 2008, 04:31:53 PM
I would run to the florist with Shari and get a rose from me too and we would also bring a deck of cards.

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Patze on May 22, 2008, 04:59:06 PM
Okay, I gotta jump on this one too...  I would bring a slurpee, and a couple of candy bars...a girl's just got to have her chocolate!  :D

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: JannaLee on May 22, 2008, 05:15:57 PM
Oooh!  Oooh!  Patze bring enough candy bars for me too!  I'll eat Lauren's if her tummy /pancreas is acting up!
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: wordnerd on May 22, 2008, 06:11:47 PM
Thanks everyone!  I am now one floor up in the rehab unit!  Just got here a hour or so ago, so I'm waiting for everything to get all set up.

My mom knows I'd like her here more because I've told her on multiple occasions.  She... well... in her own words... "Some mothers would drop everything to take care of their child if they got sick, but I'm not one of those mothers."  I'm sure you can extrapolate from there.

Thanks for all the thoughtful gifts!  Especially Janna who kindly offered to not only bring me stuff but eat it too :D

And thanks Shari for peeking in :)

Take care everyone!

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: JannaLee on May 22, 2008, 06:29:00 PM
You are so welcome Sweetie Girl!  Lucky for me, I'm not too proud to take candy away from a sick child (that would be you) and eat it myself!

I hope your new digs are comfy and the "hired help" are up to snuff!

About your mom.  I totally know what you are telling us and I'm sorry for you honey.

I'm a mother of boys about your age and always wanted a daughter, so I'm sending you, sweet child, some "mother love" 

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: wordnerd on May 22, 2008, 06:43:06 PM
Thanks Janna!  Now I'm all warm and fuzzy <3

My mom did come this afternoon, but she left after a few hours to this networking party thing.  I don't know.  I feel more stressed about latex without her here but less stressed about everything else.

I should also mention that I have an awesome view from my new room!

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: irish on May 22, 2008, 07:23:52 PM
Lauren, I finally had time to read through your adventure. I call it the hosptilization from ----!!!! I have to tell you that in spite of being a nurse I can certainly relate to your adventure.

My hubby was in the hospital 1 month at the University and had the spinal tap and had to lay in bed from Friday til Tuesday with a spinal catheter in until they decided he needed to have another surgery. In this day and age a person who has a medical problem and is hospitalized almost needs a full time "nurse" or family member to keep track of things and keep things going. There is so much going on and so many changes of meds etc that it is impossible for the patient to keep track of when he isn't feeling good and/or he is on pain meds.

Anyone who needs hospitalization is obviously ill as they don't put anyone in the hospital unless they meet certain criteria. I wish there was someone in the women's auxiallary to come and sit with you every day. Have you had a minister come to see you. Sometimes they will try to find someone to come and help out by giving support, etc. In this day and age everyone is working and life is just so busy and stressful that it is hard to give patients the help they need. God Bless the good social workers.

Hopefully things are starting to settle down for you now and that you can get answers to questions. I also feel so bad that you have had some real "dogs" as far as your nurses are concerned. I hate to tell you but I have known some nurses like that and they make me so mad. I can't imagine that they did not place signs all over your door and room about your allergies. When things get really out of sorts for you try asking to see the Nurse Manager on your floor or unit and you should get even better results. My hubby had a nurse that he had to argue with over his IV morphine when he was in hospital. He ended up telling her "honey, if you don't get me my morphine I will call the doctor myself and I know I will get it". She got the morphine for him but she never cared for him again. Thank goodness!!!

Please know that I am thinking of you and I would love to stop at the Dairy Queen and bring you a blizzard to cheer you up. Hugs Irish ;D
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: wordnerd on May 22, 2008, 07:57:16 PM
Latex allergy signs on the door, outside of my chart, my bed, and the way behind my bed.  Not that they really help when someone is rushed and not paying attention.

My mom could be here right now instead of at a party.  But she isn't and most of the time she isn't.  And then she had the nerve to make a comment about how overly talkative I was when an occupational therapist came in.  I don't know what she expects with me here by myself trying to fend off latex invasions all day and night.  I'm wound up pretty tightly.  I have to be on constant alert because no one else is.  So my high anxiety level is going to leak out somewhere.

And if my pain requires more pain meds then I just have to hope no one messes up then and lands me back in the ICU like I did when exposed while recovering from anesthesia.

Anyway... thanks Irish!  Take care!


Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: stegello08 on May 22, 2008, 08:34:11 PM

I do know every mother is different, but if my babies were in the hospital I would be right there by their side. I feel for you...I wish I could keep you company!

I hope you get some rest. I will say a prayer that God will keep watch over your hospital door for latex. I'm pretty sure he'll let you get some sound rest...;)

Hugs and Prayers
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: genko_b on May 22, 2008, 08:43:11 PM
Dear Lauren:

It sounds like there is not much you can do to change your mother; I'm sorry it is creating such a difficult situation for you.

I am really interested to hear what the tests show, if anything. My symptoms are exactly the same as yours as far as the type of weakness in my legs and the delayed peeing, just not as pronounced yet. I was thinking of you as I was dragging my legs through the prison parking lot tonight (can't take my cane inside as it is a potential weapon). My neurologist calls it mononeuritis multiplex, although we have not gotten anything definitive on EMGs or anything. He says from the complex of symptoms, that's what he thinks it is.

My physical therapist says the exercises won't reduce the problem in my legs. She is more interested in strengthening core muscles to compensate.

Throw that term, mononeuritis multiplex, at your docs and see what they think.

Take care, always thinking of you.


Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Patze on May 23, 2008, 03:54:38 AM
Okay Lauren, you've forced me to bring out the big guns now, I would also bring (a tear slidding down my face), one of my teddy bears!  A large hug you back one I would imagine would help just a bit right about now! :D  I have a ton of them and my daughter just rolls the eyes every time I get another one...I still wonder where I went wrong with that child! :) ;) ;D

Hang in there and hopefully this crew will actually watch what they are doing and hide the latex!

Hey Janna, okay now, swiping candy from the kiddies, eh?  I can so deal with that! ;D  Now to the big question, what kind of candy bar would you like?

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Katybarstool on May 23, 2008, 04:53:05 AM
Hi Lauren

I am making you a beautiful pink crown bearing the words 'No Latex'. (well, I would if I could  :D) You would be able to wear it all the time, and thre should be no doubt then.

The chocolate conversation has got me going - I think I need a poll: what kind of chocolate bar would you be.  I thinkI would be something light on the outside and nutty on the inside - how about you?

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Tamik on May 23, 2008, 07:00:34 AM

I am so sorry about your mom letting you down.  That is a tough one to deal with. I know my mom would be the opposite extreme and I would probably have to tell her to stop messing with my blankets, stop touching my hair, etc.  But I would love  her there and I am sure you would like that too.  Whenever you need someone to mother you, just go back and read all these posts again.  That won't help with the latex issue - too bad you jut could not lock your door at night!  Sleep would really help you. Talk to your doc about your fears with the latex and how they are keeping you from getting the rest you need.  Those fears are real and substantiated.  I would be in the same position.  Maybe he can come up with an idea to protect you so you can sleep.  I am sure you are not the only one who has had that issue even though you may feel like it.  Do you have any idea of how long you will be in there?

I am bringing you warm, chocolate chip cookies.  They always make things better in my world! 


As far as candy bars, I would definitely be a snickers.  I always want to remember to laugh - sometimes it is too easy to forget - especially when dealing health issues.  :) 
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: wordnerd on May 23, 2008, 12:24:52 PM
Thanks everyone for the "gifts"!  They are all so thoughtful!  Patze I don't want you to have to part with your teddy bear!  (Oh and I still get myself stuffed animals once and a while... like a Angelina Ballerina doll that was so cute and reminded me of one of my favorite childhood books... it came with a DVD too but I gave it to my 6 year old cousin :D )

I am definitely a dark chocolate girl.  Hold the nuts.  Carmel, toffee, or coffee flavored cream inside :)

My relationship with my mom has always be complicated and will continue to be.  She loves me, but doesn't know how to do the "mothering thing".  Her way of caring for me is to help with practical things.  I will never get my emotional needs met by my mom and most of the time I'm okay with that, but at certain times like this I really start wanting it again.

Genko... I will ask about mononeuritis multiplex when I see the neurologist next.  Almost every test is back now and everything is negative.  While I have the bladder stimulator in I can't get an MRI though.  I can get a repeat EMG in another week or so and see if anything shows up compared to the baseline.  I tried to look up some info on mononeuritis multiplex last night but couldn't find anything useful.  My leg muscles aren't actually weak.  I can tense and hold them in a position if someone puts them there for me, but I can't initiate any movement in certain muscles.  Namely the ones that allow me to lift and extend my leg.  Strangely the muscles on the insides of my legs that allow me to squeeze my legs together are unaffected, so I can rotate my legs to point my toes outwards and then lift my leg with those muscles instead.  Does any of this sound my mononeuritis mulitplex to you?

Well I've had a very busy day so far!  I've already had an hour of PT Evals, a half hour of Psych Evals, and an hour of OT.  Now I'm waiting for lunch and then I have another hour of PT at 1pm.  Then thankfully I'm done for the day and can rest so I can do another 3.5 hours of stuff again tomorrow.

So far they've been way way way better about latex here.  The staff seems extremely well trained in this section... probably since the program here is so specialized compared to the rest of the hospital.

Thanks so much everyone for your ongoing support!  Coming here and reading your replies has given me so much comfort and helped me get through the days here.

*hugs all around*

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: genko_b on May 23, 2008, 01:23:50 PM
Glad to hear they are not bringing scary gloves into your room now.

What you are describing, that the muscles can tense fine but you have trouble initiating action, is exactly what I have. I think there is what I experience as muscle weakness because they are not getting the manipulation they would normally get from moving around more naturally. And the muscles on the inside of my legs are not affected either. It is the lifting ones primarily.

I also get waves of what I can only describe as a sinking sensation in the whole pelvic girdle area, even when I'm not moving or haven't moved around, like the muscles themselves are exhausted and are giving up. I don't know if that makes sense or not. The same feeling as when you are exhausted and let out a deep breath and then are almost too tired to breathe back in again, so your chest kind of sinks. I wish I could describe it better. Anyway, it feels as though the muscles are giving up on me.

I will see the rheumatologist next week and will ask more about it.

Hang onto your dark chocolate or I might take some while you are not looking.


Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: kimbo on May 23, 2008, 02:50:39 PM
My mom left when My sister and I  were 7 and 8 years old. Dad gifted us with a step mother at age 9 and 10, that provided yet further deprivement of relationships.
Word, I know too well about expectations and dissapointments. God Bless you.
I am the mother of two wonderful daughters, ages 24 and 26. 
Now what is very funny; My sister and I both had reoccurring dreams in our early 20s that we had babies and had miss place them, could not find them. We laughed together about this. Although it was a true fear in us both.
I was 27 when I had my 1st daughter, within 2 weeks after her birth, I told my husband I am ready for another baby, 16 months later my 2nd baby was born. I love being MOM. And now Memaw. Not once did I miss place my children.
Even though I have been absolutely totally blessed in my on going life. I still fight disappointments of old.  I understand.....
I hope you receive support where ever you can and continue to bless us as we bless you.
You are uniquely made in your very being, special and loved by an Almighty Heavenly Father.  I Pray you feel his arms around you.

I LOVE MIDNIGHT MILKYWAYS   UUUUMMMM!  AND WARM CHOCOLATE COOKIES MAKE ME WEEK IN THE KNEES!  So I should save you from all the warm chocolate chip cookies of the world, because your knees do not need the weakness they could cause.

I'm thinking I would sneak a furry little puppy in to see you.  How bout that!!!!   yeah!

WORD  you are a blessing.     Get strong  and stay strong.
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: JannaLee on May 25, 2008, 06:32:40 AM
Darling Lauren,

I am worried this morning why you are not here!  Dear Lord in Heaven!  I hope you have not had a terrible episode!

Sending lavish "mother love" and solicitous concern!

P.S. At this point in our "Lauren Party" I'm feeling we could all use a nice big crock of chicken noodle soup.  We will need some protein to counteract all that sugar.  Because by now, I'm sure I've been told to "keep your voice down!"  I can imagine we've got each other laughing a little too much.
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: mompain on May 25, 2008, 07:30:46 PM
Okay, where is wordnerd?  I too am getting concerned.  We need an update if at all possible.  Let us know soon, wordnerd.
You are in our thoughts and prayers.
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: wordnerd on May 25, 2008, 09:17:39 PM
Hey everyone!  Just checking in to let you know I'm okay!

I had a bad two days.  Yesterday the rehab therapist had me try and walk but since I couldn't put any weight on my legs I was hold all 200 pounds of myself up with just my arms on my walker for 30 minutes while she slid my legs forward one at a time and called it "walking".  After I finally sat down I couldn't move my arms or hold up my head or upper body, so everyone was worried that my arms were now affected.  But I finally was able to start stretching my arms neck and shoulders this morning and now I can move again.  But I feel like I have whiplash (I've been rear ended twice and it felt just like this).

On top of that apparently my primary doctor has all the other doctors telling him that my leg problem is all psychosomatic.  He doesn't agree because its affecting my bladder also, but he says there aren't many more tests we can do (besides a repeat EMG).  And if that doesn't show anything he'll have to consider treating me for a somatic disorder which he said he would still take very seriously.  I asked about the fact that it sometimes takes years for AI stuff to show up in tests, and he agreed saying that when he was a resident he was only able to diagnose a 90 year old woman with the AI disease she had for her whole life after she died because all her tests were negative.  But he also said he won't treat my leg issue with meds unless there's a positive test result because he doesn't want me to have a horrible side effect if he's wrong.  But if it is AI attacking my nervous system he wants to start very aggressive treatment.  So basically he's all over the map which is very stressful for me.  He's a very all or nothing kind of guy.

In the meantime my mom and sister came over today for 2 hours.  Most of the time they talked about what they were going to go do after they left and about my cousin's wedding plans which I won't be able to attend in NY because I've been so sick.  Then they left to go have fun at the movies and I expressed my disappointment that they weren't staying very long and how lonely and alone I felt.  And they both got mad at me.  My mom said that I want her to have no life and be here every second but she's not willing to do that.  And that I was being too demanding and unreasonable and just because I'm sick and in the hospital she is still allowed to only come for a little while most days (and I should be grateful that she came at all) and she should still be able to go on vacation and out to the movies and doing fun things.  I said I felt like I should be higher priority than going out and doing fun things with her friends and she said that I'm not a child... I'm a big girl and should be able to be alone in the hospital most of the time.

Anyway I just got so upset at this point that when they left I was having intrusive thoughts of self harm.  So I called my mom to find out if I could have a phone session with my therapist because I needed someone to talk to and be supportive and she said no and hung up on me.  And then I called my sister to explain why I needed to talk to my therapist and ask my mom for me.  I was so upset that I blurted out some of the intrusive images I was seeing so my sister hung up on me and called the nurses station to tell them I was going to try and strangle myself with the phone cord (which was one of the images that I blurted out that I was having).

So then the charge nurse and my nurse came in and I explained what was going on.  And luckily the charge nurse was really really empathetic and understanding.  And she had met my mom and already suspected I wasn't getting much emotional support even while my mom is here (which isn't much of the time).  So she stayed with me and talked to me and that really helped calm me down and have my feelings of being abandoned by my family (and my friends) during such a difficult time in my life are justified.  And that I'm not too demanding to feel like my mom should have being here for me as a much higher priority than going to the movies or on vacation with friends.  I don't even want my mom to come anymore because she keeps reinforcing this idea that I should be grateful if she makes a little time to come for a few hours and its my problem if I feel disappointed if she has a life and isn't here every second of the day.  It just gets me upset over and over again.  Every time she comes and treats me like this and everyday I feel all alone and abandoned all over again.  So I don't even want her here if she can't be supportive.

And now since my sister called and reported that I wanted to kill myself the charge nurse just came in and warned me that she was legally obligated to tell the doctor on call who also felt legally obligated to call a psych consult even though she don't think I'm going to do anything which I'm not.  So now I'm waiting for the stupid psych consult to come.  And I'm hoping they aren't alarmist and understand what happened.  That it was just my OCD that got out of control for a while and instead of relaying my message to my mom so I could call my therapist and have someone to listen to me and support me for a while she called and reported me.  I don't know if I've ever felt to bitter towards my sister.

So anyway... don't worry!  Though things seem all messed up right now I'm ultimately okay.  I can move my upper body again thank god!  My intrusive thoughts of hurting myself have gone away (back to the normal random and benign ones that I don't mind dealing with).

Also I do have a UTI again.  I've been having soooo much pain... not to mention blood and protien in my urine.  So now I'm on Bactrim Double Strength for that.  Because of the infection and the arm thing I had the day off for rehab therapy, but I start again tomorrow.  I did manage to get some extra sleep this morning.

Thanks everyone for continuing to be so supportive.  I don't know how I'd do this without all of your unconditional support!  Take care!

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: genko_b on May 25, 2008, 11:09:30 PM
Glad to hear you are still hanging in there. I sure wish my neurologist could talk with your doctors, since I have a milder form of the very same symptoms. It does not sound somatic to me.

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: wordnerd on May 26, 2008, 02:00:29 AM
Genko - If you have any info that your doctor gave you about why he thinks its mononeuritis multiplex, I'd pass it on to my doctors.  I forget where you live... but I was wondering where your neuro is at... perhaps our doctors could talk or I can give him a call myself...

PM me if you want.

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Scottietottie on May 26, 2008, 05:44:58 AM
Hi Lauren - that sounds like a horrendous two days indeed.

Don't be too tough on your sister. Imagine if you'd gone through with any of your threats and she hadn't called tyhe charge nurse to warn them! You obviously know yourself that you were not going to strangle yourself but it sounds as though your sister was none too sure. She wouldn't have been able to live with herself if anything had happened.

Now I don't know your Mum - and I don't know how old she is (could she be menopausal?) but you've said she's been going through a really rough patch with your Dad and she's also been going through a really rough patch with you. I know you're perceiving her as uncaring but I bet she's actuially worried sick because nobody likes their child to be ill even when their child is a grown woman. She is also quite possibly depressed herself. getting on a bit, on the brink of a divorce and wondering where he life has gone and what her future holds. Sometimes instead of crying, people display anger. I'm not saying this is good - but I know it happens.

I agree she's not handling it well. It's a pity you can't have a sort of family therapy session because that would help get things in perspective all round. when I was your age people didn't have hospital rooms to themselves here in the UK so we never got as lonely as someone in a room on their own. I had a room on my own when I had knee surgery and it has advantages and disadvantages.

When I was a kid in hospital we were only allowed visitors (including parents) for one hour in the afternoon and one hour in the evening. It was my Dad who told me he resented giving up his time to visit (I was 14 at the time) so I told him not to come back - and he didn't.

When my 3 year old had to have his adenoids out I wasn't allowed to stay in the hospital with him. I was allowed to be there day time but had to leave by 6 p.m.

Please don't take any of what I've said the wrong way. I'm really sorry you are suffering the way you are and I also think it's worse when you have no idea why what is going on, is going on and your doctors are obviously not sure either. I wish that you could have your mum do what you want and also that she wanted to work that way. I also hope that you get some answers and banish the infections you're being plaqued with. Is there any interaction between patients in US hospitals? I don't know about your system. It was always other patients that kept me sane during hospital stays.

Take care - Scottie  :)
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: JannaLee on May 26, 2008, 05:48:42 AM
I think getting your doc to talk to Genko's doc is a real good idea.

Lauren, it is a relief to see you are not worse than the other day...okay you are a very much worse for wear...but not latex exposed or some such other nightmare!

I support you, and your emotional troubles from all this are like many of the rest of us have.  The latex allergy and mysterious crippling leg/bladder symptoms are two gigantic stress-ors but when you pile on feelings of abandonment and loneliness I would imagine your physical symptoms are further irritated and psych. issues also act up!

It would be wonderful if the psych consult person would do a little therapy?

Please let us know if you start to feel hopeless.  Just a very gentle reminder that "this too shall pass" and you will move on to better things and new relationships in your life.  I mean look at us!  We are all sitting right here worrying over you my dear child and wise friend.

And I gotta add to Scottie's ideas~  Some people use "avoidance" as a coping strategy when they are afraid.  Could that be what your mom is doing?
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: kimbo on May 26, 2008, 07:55:28 AM
It's just good to hear from you. 
I hope as Scottie expressed, that maybe you find someone that is also in the hospital with you, to talk to. You could console with, give support and receive support.
I hope by now you have gotten hold of your therapist. I am sure this could help you thru the relationships and expectations.
I hope your DR continues to listen to you.
I am thankful for the advise of those on this forum. Your family here is a great resource of support.
You are a very important part of this family of support. You are strong and full of wisdom to contribute to many who seek answers here in this network of our health issues. You are an inspiration to many. I am sure that where you are now in the hopital there is some one in need of your strength and support.
WORD!  Get strong.  kimbo     
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: JannaLee on May 26, 2008, 01:14:14 PM

I just read back over my post just above Kimbo's and fear it may sound flip or as if I don't understand how unbelievably horrible things are.

Could you just have a "ditto what Kimbo and Scottie said" from me?

I am deeply concerned about you and do not want my words to be the source of any hurt, frustration or feeling of invalidation.

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: lynnmarie219 on May 26, 2008, 07:58:22 PM

Have just been reading about your last week in the hospital. I'm glad that you are now in the rehab area where things seem to be a bit better with the staff and less latex scares!

And I'm so sorry that your family support doesn't seem to be there for you right now. Is there a way, as the others have mentioned, to get together with other patients in the unit you are on as a support group for each other? Maybe that is available as many of the patients in that type of rehab setting are there for an extended period of time for physical and occupational therapy and may also need some emotional support and friendship.

How about the volunteer system? What you said about that one volunteer who sat and held your hand touched my heart. Is there a program with the volunteers set up for visiting or doing activities with patients? Just a thought....

You said you had a wonderful view from your new room......what is it? Is it a peaceful view that can help you to relax when needed and maybe help you to do some more of your beautiful writing?

Hang in there.....we are all here for you in spirit!

Lots of hugs to you.........
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Tamik on May 26, 2008, 08:06:43 PM

Just wanted to send love and light your way... i am thinking about you as I do every day and am hoping you find peace in your chaotic situation. You are an amazing woman. Tami K
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: genko_b on May 26, 2008, 08:54:58 PM
Hi Lauren:

I sent you a PM about my doctor.

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: wordnerd on May 26, 2008, 11:03:22 PM
Wow what a day.  Saw my neuro bright and early.  Who needs an alarm clock if your doctors are going to come wake you up at 6am?  He is really upsetting me.  He won't answer my questions or explain his thought process.  Apparently the only test left to do is the repeat EMG in one more week and then only an MRI if I get the stimulator removed.  Everything came back normal he said so just focus on PT and it will get better.  Just focus on PT and it will get better.  This is his all purpose answer to everything.  The only different answer was when I asked if it might be AI related.  All he would say to that was the tests for MS were negative but that doesn't 100% rule out MS but he's not a rheumy so he can't really comment on anything autoimmune.  It's really infuriating to have my already inadequate sleep interrupted for such a pointless conversation.

Next came the psych consult.  She was really nice.  She understood what was going on with me.  She's going to try and get me more psychological therapy while I'm here.  She also called my mom to let her know how I was feeling... I asked her to because I thought it might sound different to my mom coming from someone else.  It did.  A lot of crying (a bit of yelling) later on both our parts (mine and my mom's) I felt like she understood how I felt a lot better.  I had to keep reassuring her that I don't expect her to be here every second and have no life besides this and no downtime because that is what she perceives that I want.  I really just want to feel that she's not putting her social life ahead of me all the time.  She said that if I'm going to continue to be sick and in and out of the hospital indefinitely I can't expect her to prioritize her social life second because its just too much stress for her with everything else going on and she wants to have a life.  I pointed out that if me being in the hospital yet again is so overwhelming to deal with for her, imagine how I feel since I can't take a break from dealing with being sick and the same family issues are very stressful for me too.  I still need just as much if not more emotional support.  She seemed to get that.

Her anger is mostly that she feels guilty if she isn't here and she holds me responsible for it.  She doesn't want to be here but she also feels bad that she's been pretty absent during this hospitalization.  He only way she can reconcile both feelings is if she can blame her feelings of guilt on me being too demanding and tying to guilt her.  I also apologized if I sounded like I was trying to criticize her because I didn't want to do that.  I just wanted to express how scared and lonely and abandoned by everyone if felt (my friends included) not just her.  And I told her I appreciated that she's really been the only person to come on a regular basis.  I also made some suggestions about things we could talk about or do that wouldn't make her feel so stressed by me needing to vent and that also wouldn't be about fun things everyone is doing without me.

Anyway she was much more receptive after she talked to the psych consult and she's coming tomorrow.  My dad came today.  It was... interesting.  We can't talk about anything concerning my health situation except for the very immediate concerns like ow my urethra spams are really painful right now.  The biggest problem though was that he kept going out to get the nurses every two seconds and making them really annoyed and mad at me.  He's so anxious that at the slightest problem he's heading out the door for the nurses and I'm trying to get him to sit down so I can use the call light politely if necessary.  The charge nurse who was so nice to me last night finally lost it with him and told him off.

I had another 3.5 hours of PT and OT today.  The worst part wasn't the therapy itself.  Luckily I didn't have that same stupid physical therapist who made me hold my body weight up for so long that I strained my neck, shoulders, arms, and upper back.  My therapists today were much more reasonable about how to work on getting leg function back without injuring another part of me.  But every time I would move my legs (or the therapist would move my legs for me) I was having horrible bladder and urethra spasms that triggered blood to come down the catheter.  On top of my UTI.  Also the super dry hospital air finally caught up to me today and I've had this stupid hacking cough all day.  And every time I cough it also triggers spams and bleeding.  But I pushed through all my therapy anyway practicing standing for a few seconds and sitting back down over and over.  And other leg exercises.  And even sat up in a chair for 45 minutes between two sessions of PT despite my bladder's protests.

Unfortunately I was not able to rest afterwards because all the blood that had been draining down the catheter clotted inside the tube.  I didn't realize this for 3-4 hours of agony.  Then finally I had such a bad coughing fit I started leaking blood and urine out around the blocked catheter... which prompted me to see that no urine had drained out the catheter in hours despite all the water I'd been drinking.  I had a heck of time getting the already annoyed and busy nurses in to see that it was blocked by clots and clean me up because by that time I was sitting in a puddle.  But before they could do anything about it I had another really bad coughing fit that actually pushed the clots through and then let out 800 cc of bloody urine that had been backing up for hours (sorry if this is way too much info  :o ).  I felt sooooo much better after that because all the backed up urine had made the spasms so much more painful.  But the same thing happened again a few hours later.  I had to have my bedding changed a second time but luckily another coughing fit pushed the clots through again.  And my urologist at this hospital who was treating me before I went to the other hospital for the stimulator is coming tomorrow, so that's good.  Hopefully the Bactrim will kick in and it will stop spasming and bleeding soon.

My doctor also ordered atrovent by nebulizer (instead of inhaler) followed by a 20 minutes of mist through a mask every 3 hours.  It's really helping the cough and gave me my voice back (I was so horse for a while today no one could understand what I was saying).  Also my primary doctor came in and talked to me about my legs again.  This time he didn't make any mention of it being psychosomatic at all.  He did say he hopes that whatever is wrong will respond to the rehab program and get better on its own and that he didn't want to start me on some heavy duty immunosuppressants without any tests showing that AI is the cause.  I agreed with him and he said that if I don't get better from the rehab and especially if the EMG is abnormal when we repeat it he will start aggressive treatment.  He said either way he wouldn't do nothing and ignore my leg problem whatever the cause.  This made me feel a lot better.  Especially after getting nothing out of my neurologist.

Yesterday when he was here he was really mad that I had the day of therapy and was catching up on my sleep.  He told me he'd have the nurses to strap me to a chair if they have to because he doesn't want me in bed when its at all light out.  He says this to me way too often... like every time I see him.  He has some idea that when I stay in bed or sleep during the day its because I'm lazy and he has to be tough with me and push me.  He doesn't.  I have a hard enough time listening to my body and not overdoing it to the point of making myself worse without him yelling at me.  But he's a very good doctor and willing to take on my very complicated case, so I put up it and try not to let it upset me.

Anyway he didn't even bring it up today so apparently he read how hard I'd been working in my chart and was finally convinced I'm not lazy.  Or maybe my response yesterday about being the type of person who when I used to be able to take really long difficult hikes and I would hit that point where I felt too tired to go on, I would take that as my cue to double my pace and push twice as hard to the finish.  So maybe that helped him understand how hard of an adjustment its been to try and not over do it and how motivated I actually am.  Either way I was happy he didn't comment on it today for the first time ever since I started seeing him.

As for my sister... I'm really mad at her.  The reason I was calling her was to try and okay a phone session with my therapist because I didn't want to act on any of my intrusive thoughts but I needed some help.  But instead she refused to relay the message to my parents and demanded that I call in the nurse that second.  I told her I was going to call the nurse and ask for a xanax to help me calm down but could she please ask mom and dad for me first so I can try and get ahold of my therapist before its really late at night.  But since I didn't call the nurse that second she hung up on me and called my nurses' station.  She was angry at me for getting upset when she left with my mom after only a few hours and this is how she handled it.  It wasn't like I was refusing to get someone to talk to or anything.  Quite the opposite...  My sister can be very passive aggressive like that.

Anyway... now for some Q&A  ;D hehe

My mom is way way past menopause.  She's 58 now and I think I remember her going through it when I was in high school almost 10 years ago.  But she is depressed and very stressed right now.  She also doesn't know how to be empathetic to those closest to her.  And I think she still wishes I'd go back to my old role in our relationship where I would mother her and listen to her and help her with her problems (even with my dad) like a friend or therapist.  I did that from age 5-17 and I never plan to again.  But she remember a Lauren who was seemingly needless and perfect and catered to her needs all the time.  My sister was always the needy one growing up and my mom is used to that and doesn't have a problem with my sister needing things from her as her daughter.  But she has a big problem when I need things from her or want her to be emotionally supportive.  So... yeah.

Also Scottie - I can't believe that you couldn't stay with your 3 year old son!  When my sister had a spinal fusion surgery when she was 7 they let my mom sleep in her room with her.  I might try and contact the volunteer program again tomorrow and see if they have someone who'd be up to keeping me company for a while sometimes.

Janna - Yes the stress of my family issues and the latex and not knowing what's wrong with my legs and ect. certainly don't help!  For sure they don't help  all my already existing autoimmune issues!  And don't worry you didn't sound flippant or anything.  I do have a very strong sense that no matter what happens however good or bad, I will ultimately be okay.  And just to clarify I don't actually want to hurt myself.  Even when I did cut a few times as a teenager I never wanted to.  The intrusive images can just get so overwhelming, but I know that they are my OCD and not me and they will go away eventually.  But they are very upsetting and I feel a lot better if I don't have to deal with those horrible intrusive images and impulses alone.

Kimbo - As much as I appreciate all the amazing support I've been getting from everyone here (I can't even express how much it has helped me), I can't wait to get this behind me and back to supporting everyone else.  I think that ultimately that is the most healing emotionally for me, so I try when I have the energy to read and respond to some posts and support everyone else here.  Thanks... gosh I'm tired and can't word this right... thanks for sharing the positive impact I can have towards others.  Well that doesn't do how I feel justice at all so let me just send a *big hug*!

Lynn - The view is really nice.  I'm on the 7th floor which looks out on part of the city with mountains on the border.  It's still pretty green since we've had some late rain so the mountains (well more like big hills) still look lush with plants and grass.  Soon they'll been turning brown as the summer sets in.  At night I can see the lights of the city.  It's really pretty also.

Tamik and everyone else who continues to be so supportive (and made it through my ridiculously long posts) thank you thank you thank you!!!!

*hugs all around*

<3 Lauren
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: irish on May 26, 2008, 11:08:46 PM
Lauren, I am sorry that you have had such a rotten holiday weekend. I imagine you Mom thought she was just dying to have to sit in a hospital and visit again. I think you will have to continue to develop a very thick skin where you mom is concerned as she really sounds like she can't cope with stressors in her life.

I want to express my feelings again about you find assistive living where you would have meals prepared, help with dressing, bathing and some transferring. You are too young to go to a nursing home and you need to have some staff and residents around you that can interact with you emotionally. I know that some assitive living have older people and some cater to a certain number of younger people. I will stress again the fact that you are having all these health issues and then to suffer from the lack of support of family is just the pits. You would find that staff of a facility can be like family. There is usually a certain number of turnover in staff but most places have some core staff members who are just great.

I would encourage you to call you social service/case worker at the hospital and see what can be done for you. The other thing that concerns me is what would happen to you if your mom would just decided to up and leave and move elsewhere. It would really leave you in a bind. It is times like this that cause a person to end up in an assitant living that is available at the moment and not one that you are really interesting in. Much of the time you have to be placed on the waiting list anyway. Good luck girl. Hang in there. Say a prayer and take a deep breath. Get some sleep and it will help your mind deal with these issues better. Hugs Irish ;D
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Scottietottie on May 27, 2008, 07:41:46 AM
Hi Lauren - Whew! What a weekend. The whole bladder bit sounds totally horrendous and I'm really sorry to hear you are having so much pain from a procedure that was meant to help.

Your neuro sounds pretty useless but will maybe come good. I hate docs who won't even express an opinion however. There are some who just seem to be scared to say anything without back-up, watertight, evidence.

The whole psych consultant bit sounds positive and it was a really good idea to get her to talk to your Mom and hopefully get her to rethink her/your situation. It sounds like your Mom could do with therapy sessions too to get her head sorted out a bit.

I salute you for spending that amount of time and energy doing the physical therapy. Especially as it is causing you such pain. You must have felt completely exhausted after a session like that. I hope the therapists noted the pain that it was causing you and pass the info onto the docs.

I agree with you that your sister should have passed your message on.

I hope you have a turning point soon and that the pain abates. You're having far too much to contend with.

(((((((( Lauren ))))))  Take care - Scottie
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Shari on May 27, 2008, 12:02:09 PM
Hi Lauren~~I am only home for moments to check my birds etc. and pop on briefly here.  Then I head back to my daughters to help out.  I wanted to make sure to give you a special "HUG" today!!!!!!  Take good care sweetie!  ~~Shari~~

Scottie~~As allways you are inciteful and sweet!!!!!!
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Katybarstool on May 27, 2008, 12:05:11 PM
Hi Lauren

You have been given lots of good ideas, so I won't try to add any more. I would just like you to know that I read your news every day, and continue to send you positive vibes.  Hope you are feeling a little better today.

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: mompain on May 27, 2008, 12:30:43 PM
After thinking about some of the things that you have written and how others have responded, what do you think about the idea of having your mom and sister read all of this?  It sounds to me that maybe this would really open their eyes as to how you feel about it in ways that you can't always say to them.  This might not be an alternative, but oftentimes if someone can read something instead of it being said, it makes it easier to hear and makes it hit home to a greater extent.  This may be what mom and sister need.

I wish you continued good luck and better health.
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Pooh on May 27, 2008, 01:33:24 PM
Hi Lauren,
Wish I could wave a magic wand and make you all better.  I'm sorry about the problems you have had to endure lately.  Maybe the therapist can get through to your Mom and sister.  I sure hope so.  I'll bet it would make a big difference in your life if you had their support. 

Take care and keep that wonderful outlook you have and I hope you get out of there real soon.

Hugs, Pooh
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: quiger on May 27, 2008, 04:45:07 PM

I too have been following your plight and I am sorry for all you are going through.

I think Irish made some good points about assisted living. I am not sure if your finances could support that, but it might give you a better sense of independence and still allow you the assistance you need. This of course would also take some of the pressure off your mom so maybe she would be more involved with your life. It might be nice for you to have people, especially young people, around to talk to and spend time with.

Whatever is decided, I hope you start doing better soon. We are all thinking of you.


Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Care on May 27, 2008, 09:06:00 PM
Hi Word,

I just caught up with whats going on, my daughter and her hubby came from Atlanta to visit us.  I had fun!  I wasn't sure if I remembered how to.  My mom has deteriorated in the past two years.  She is 84 years old. She gets confused, forgets everything and I have to be with her all the time.  I love her very much but it can be difficult.  She fell 2 weeks ago in the middle of the night.  She tried for 2 hours to get up and finally yelled for me at 5:00 in the morning.  I am not big enough to get her up so after an hour of discussion and a cup of coffee for both of us, I called the paramedics.  That was hard for both of us.  I was sad she had to endure that. My situation and how I feel may be somewhat "a parallel" of your situation.  I find myself at times angry.  Then I feel guilty, but I finally realized that I am not angry that my mom has become so dependent on me.  I am angry that she is getting older.  I love her dearly, but seeing her health decline, showing signs of dementia is hard.  I am angry that it is happening to her!  I want her to be healthy and intact cognitively.  I want her to be my mother.  I am becoming hers. It's hard.  At times I would like to escape it all and pretend all is well, but it isn't.  Life is conflict with a bit of joy interspersed.  I prefer interspersed. ;D

Your mom may be angry that you are ill, not angry at you but angry at your illness.  It's hard to deal with even when you love someone dearly.  So her anger is not at you but the illness/situation.  It is a very normal feeling.  I also agree with Irish.  I feel you would be happier living somewhere else.  It would give you more control over your life, your mom would feel less stressed and a better relationship could ensue.  It's hard Lauren even when someone loves you dearly.  Somehow we all have to climb out of the "black hole" as I call the emotional side of a chronic illness.  But once you find your way, and you have to do that yourself, the other side can be beautiful.

We care for you Lauren, very much.
Many Hugs...

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Tamik on May 27, 2008, 09:37:47 PM
OVER 1000 - that is the number of views on your post! Feel loved and supported! :)  We are right there with you!  Tami K
Title: Quick Update
Post by: wordnerd on May 27, 2008, 11:49:51 PM
Thanks everyone for the support and suggestions!  I have thought about assisted living, but my research hasn't turned up any place that would really suit me.  And everything is so up in the air right now!  We have to move out of our current 2 story rental house in August, so my mom is apartment hunting for a place for me and her.  But it's hard to know what my health needs will be then.  Right now I'm practicing using a wheelchair to get into the bathroom in occupational therapy, but there's no way I could get a wheelchair into my current bathroom.  But I can't walk yet either.  And my doctors don't know what's wrong still.

Today was better relationship wise.  My mom came for the afternoon and evening and I think we both enjoyed each others company.  We also had a talk and I think we get where each of us is coming from much better now.

I had 3.5 hours of therapy again!  I woke up this morning feeling horrible.  My BP was 90/40.  A record low for me.  I'm always almost perfectly 120/80.  The nurse retook my BP 4 times until it was 115/50.

I had a psychiatrist come and follow up about the other night.  She's going to try and get me regular sessions with a psychologist while I'm here. Yay.

I pushed myself through my PT and OT and slept in between.  I haven't been able to eat much since yesterday's lunch.  Pancreatitis or something is making me not hungry and nauseous.

But everyday ends up being an adventure!  During my last PT session I was chatting with the therapist while I did my exercises and all of a sudden I felt sooo tired and could barely keep my eyes open.  I kept going anyway.  Then the therapist asked if I was okay because myy lips were turning blue.  So I sat down and rested and then finished the session, but my eyes started fluttering uncontrollably.  I've had this happen 2 other times and one of them was right after my oxygenation dropped during a procedure.  The other time I was dehydrated.

The nurse paged my useless stupid neurologist.  He came and basically said that it was nothing to worry about and that it wasn't a seizure.  When my mom asked what he thought was causing my eyes to flutter like that he said that he can make his eyes blink quickly too... I still can't believe he said that.  My mom then asked about my lips turning blue and if that could be all in my head too since I didn't even notice my psychical therapist did and what about the other seizures I'd developed a few months ago.  He responded by saying that he doesn't think anything is neurologically wrong with me and that its probably from my meds.  So my mom asked why he put me on anti-seizure meds then.  He wouldn't answer but said instead that he would order an EEG.  I asked what the point of the EEG is since the last EEG showed epileptic activity and you said it was probably only my meds and that "probably" implies that it could also be something else, so what is that something else?  He just repeated that he would order and EEG and recommend we get a second opinion for our piece of mind.  Then he left.  I am sooo mad.

So I had my EEG.  I still feel horrible.  Last time I checked you can't fake a low BP and make your lips turn blue on command.  As for the eye fluttering... when it happens my eyes spasming so hard looking up that its painful.  I know violence isn't the answer but right now I want to throw something big and heavy right at my neuro's head!!!!

Also the urologist never showed today to check on my catheter.

I'm really worried about my lips turning blue.  That's never happened before.  I didn't even feel short of breath... I just felt so so so tired and my chest felt too heavy to take a deep breath.  Normally during PT I start breathing hard but this time I wasn't and yet I didn't get that feeling that prompts you to take deeper breaths.  It was so weird.

Anyway all of my rehab people got together today and decided that my goal is to go home in 10 days and by then be able to walk 50 feet with 50% help and use a wheelchair the rest of the time which as I already mentioned won't fit into my bathroom and barely into my room.  If I'm not better enough with my other health issues after 10 days then I might have to be admitted back into the regular part of the hospital.

I feel like I'm getting no where fast.

Thanks again for all the kind replies.  I read them all and they made me feel very comforted to know how much everyone here cares!  And the view count... wow!  Falling asleep at the keys....

*warm fuzzy hugs*

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Tricia281 on May 28, 2008, 06:37:10 AM
Wow Lauren, you hang on in there and don't let anyone keep you down.  During your low points, remember what a strong and resilient person you are and that 'this too, will come to pass'. 

Take care,

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Pooh on May 28, 2008, 09:44:45 AM
Hi Lauren,
Sounds like you had a really rough day.  As Tricia said "Hand in there, this too will pass".  With all the people praying for you and supporting you, you have to do your part.  Don't let it get you down.  I isn't me going through all that crap, but the sooner you get done, the sooner you can out of there. 

We really miss you here and will be so glad when you are back.  I'm still searching for that "Magic Wand" and if I find it, you will be the first one I try it out on. ;D  I promise.

Take care dear, and fight like heck to get well, we're waiting for you.

Hugs and God Bless,
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Pooh on May 28, 2008, 09:46:35 AM
One last question, can you give me your address at the hospital.  Either here or in a PM.  That way we can send your cards directly to you instead of home and then have to have them brought to the hospital.

Pooh  ;D
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Tamik on May 28, 2008, 01:17:22 PM
I would like your address too! :)  Tami K
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Skylar on May 28, 2008, 02:38:33 PM
Hi Wordnerd - I love you name.  ;D I'm new here and just found this post. I'm going to have to pick my jaw up off the ground when I'm finished because I can't believe all the trauma you've been through. I hope you find some real answers and a road map to help you find you're way back to feeling better and out of this nightmare.

I'm also certain that a lot of people must be reading this and just don't know what to say to help you feel better, but I'm sure they are wishing that you feel better soon.

I noticed awhile back someone talked about candy etc. What is your favorite treat? How about a food fight party - can I throw some whipping cream your direction? I'll also show up with mango lassis for everyone to drink.

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: lynnmarie219 on May 28, 2008, 07:43:33 PM
( (

Angels always comfort me........Here's some to watch over you!

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: irish on May 28, 2008, 09:11:37 PM
Hi Lauren, I would hope that you can get another neurological assessment while you are still in the hospital. I don't think that the one you have is putting his heart into getting you diagnosed. He is possible having burnout!!!!! Or laziness!!!!!

The blueness of the lips can and does occur when a person has a seizure. It sure sounds like a distinct possibility! I have yet to find anyone that can make their lips turn blue on command. I hope that you will pursue this new neuro as it may have a bearing on delaying your discharge. I know that they like to send people home as fast as they can, but it sounds like you are not able to do much for yourself right now and they need to find out why.

I will continue to send prayers up for you. Irish ;D
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Nettie on May 29, 2008, 12:17:23 AM
Lauren, I don't usually read long threads, but I have spent the last few days catching up on your ordeal. 

I am praying that a good doctor will come your way and finally figure out what is going on with you.  I'm so sorry to hear how some of the doctor's have treated you.

I think that the complexity of our illnesses tends to bring out either the best or worst in doctor's, and unfortunately when it's the worst it comes across as blaming us instead of admitting that we may need someone with more skill than they possess.

Our survival requires developing a very thick skin; something that is really hard to do when we are so sick.  But , always remember that it only takes one good doctor to figure things out.  Listen to your own instincts and keep searching for that one doctor.

I know that it would be really difficult for you to travel and I don't know where you live, but the following is a link to something called the "Undiagnosed Diseases Program" at the NIH in Bethesda, Md.  One of their goals is "To provide answers to patients with mysterious conditions that have long eluded diagnosis".


Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: JannaLee on May 31, 2008, 06:11:02 AM

I am worried about you again.  Are you okay, honey? 

As soon as you are feeling up to it can you just type a couple words like "Still kickin" maybe that wasn't the best choice of words but you don't have to do a long update if you are not well enough....just even a little "z" to tell us you are sleepy?

Thinking about you so much and wishing you well.
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: wordnerd on May 31, 2008, 02:33:40 PM
Don't worry Janna!  I'm still kicking.  I've just been super busy relearning how to kick!

I have 3.5 hours of physical and occupational therapy combined per day.  I am soooo lucky to have the physical therapist I do!  Unlike the other PTs that I've had since I've been here (and on the weekends in rehab filling in) who try to make me move my legs using the muscles that won't respond over and over until I'm ready to cry with frustration, my PT has come up with ways for me to do things with different muscles.  She basically isolated my hip flexors as the main muscle that won't respond at all, so we've been working on ways I can still walk and stand using the other leg muscles and the momentum of my body weight that are still working.  She's only a few years older than me which is kinda nice also.  She's been pushing me really hard but in ways that make sense.

Yesterday I walked 50 feet three separate times using muscles I'd never tried to walk with before!  And yesterday I started to practice going up stairs sideways!

In between the 3.5 hours of therapy I've been having a bunch of new tests done ordered by the new neurologist.  He was very thorough both in examining me and doing a history.  I'm hoping that he will be able to figure things out.  He seemed to take me seriously in any case and I have a better feeling about him in general.

In the meantime, I've been sooooo exhausted that I asked to check that sleeping with oxygen on was doing enough for my sleep apnea.  Turns out that my oxygen was dropping below 80 repeatedly even with 4 liters of oxygen on.  So last night I got set up with CPAP.

I've made a lot of progress in physical therapy, but my main problem the last few days has been severe vertigo.  My primary doctor kept insisting that it was from being in bed too much.  But yesterday after doing so much activity I came back to my room to rest for an hour in bed before my repeat EMG. but my primary doctor was there.  He wouldn't let me get into bed so I had to sit in a chair and promise I wouldn't get back in bed after he left.  I was feeling so bad from the vertigo and practically falling asleep, so I finally called the nurse to check my vitals.  Sure enough my oxygen was only 92 just sitting down in the chair.  She put me on 2 liters of oxygen and the vertigo went away.

That made me start wondering what my oxygenation was when I was doing PT the last few days feeling like the whole room was moving.  Then I started thinking about how hard I was working but it wasn't making me breath faster or deeper to compensate.  It's like the reflex has just been gone the last several days.  It's really weird, and I've needed to be on oxygen since then yesterday.  I'm trying hard not to worry about it too much because that's sort of the mantra here in rehab... just focus on rehab and the medical stuff will get worked out by the doctors.  The rehab doctor did say that he's going to make sure my oxygen is monitored during my therapy from now on.  I have the day off today luckily anyway.  I've just been sleeping like its going out of style.

I finally got a nurse to change my catheter!  It feels soooo much better I can't even explain.  You don't even want to know what the old one they took out looked like! Ewww!!!!  I've also been drinking tons of Miralax in an attempt to get that going again.  I'll spare you the details though  ;)

I also saw my autoimmune pancreatitis specialist's fellow the other day, so I might get some treatment going for that.  The status of the stupid bladder stimulator that started all this is still up in the air.  My docs are still deciding whether to try turing it on or pulling it out or whatever.  Even thinking about the stimulator makes my head hurt!  I feel like my body is a microcosm exemplifying the butterfly effect.  Who would think that a little flap of a wings from a bladder stimulator surgery would result in all this!  Chaos theory... bladder stimulators... they both give me a headache!

Tami and Pooh and anyone else who wants my address - I've been trying to figure out if there's a service that will give me an address to post here and then forward stuff to me because I don't really want to have my full name and address floating around the internets for safety reasons, ya know?  I really really appreciate the thought though and love getting snail mail, so if anyone has any ideas let me know...

Skylar - First of all, welcome to Sjogren's World!  It's so amazing to be a part of a community that newcomers join for support and then get busy right away supporting others!  Thank you so much for your well wishes!  I continue to be amazed at the view count on this tread!  And to those of you who are are reading along, but don't know what to say, I hope you know how comforting it is to know that so many people care and that you don't have to say anything.  But I can never have too many *hugs*  :)  Also I could go for some dark chocolate fudge right now!  :D

Tricia, Lynn, and Irish - Thank you so much for your on going support!  You are all angels!!!

Nettie - Thanks so much for the link!  I will definitely consider that program.  You and Irish are so right about certain doctors!  The tough cases are the ones that really show the best or worst in them!  And so many docs won't admit that they just plain don't know!  This thread is getting rather long isn't it?!  Props to anyone who's just started reading it now!  I could practically turn my posts into a novella when all is said and done :D

Janna - Zzzzzzzzzzzzzzzzz  ;)

*hugs everybody*

<3 Lauren
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: JannaLee on May 31, 2008, 03:03:42 PM
Darling Lauren!

So glad to hear that you are relearning to kick!! 

I find the oxygen issue very fascinating.  It is so easy to monitor and can provide another clue in the puzzle.

Thinking of you all the time and wishing for your wellness.
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: genko_b on May 31, 2008, 03:35:01 PM
Hi Lauren:

Glad to hear you have just primarily been busy. Is it possible the oxygen issue is related to the others? That is, could it be an autonomic nervous system issue? That is interesting about the hip flexors. I'll talk to my PT as well.

No ideas about how to do addresses safely. I do have a P.O. box I use for all prison mail and would not mind putting that out in a PM; others could do the same if they have such an address. That would require you to write first, however.

Take care,

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Tamik on May 31, 2008, 05:41:27 PM

WOW! You sound like you feel so much better!  Pretty soon you will be dancing ....  :)   Glad you are finally getting doctors who are willing to help you.  Hopefully this new neurologist will be persistant  - sounds like he is already caring. :)  WHen he figures it out, make sure the last one knows what the issue was.  Made me feel good educating 2 neurologists about something they both missed that my 13 y.o. diagnosed! :)  Take care, see if they will let you go outside to get some fresh air, and imagine yourself eating that dark chocolate fudge! Tami K
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Skylar on May 31, 2008, 05:43:00 PM
Okay, here is some dark chocolate fudge  ::) Enjoy this reward for all the hard work you're doing with the PTs.

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Scottietottie on May 31, 2008, 06:01:06 PM
Hi Lauren  :)

After doing all that work and walking so far I'm sure none of the docs will now accuse you of being lazy!  >:(

I hope they get to the bottom of the muscles not working and also the drop in oxygen levels.

Take care - ((((( Lauren )))))  Scottie  :)
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Patze on May 31, 2008, 06:25:58 PM
Hi Lauren,

I'm so glad to see you doing much better especially in the PT department!  Good work lady!!! :)  Hey, save some of that chocolate for me!

You did bring up a good issue and it has me curious (yep, all you folks get ready to duck and watch out for the fog coming out of the ears too now! ;)).  I noticed that you mentioned that your oxygen level dropped when you underwent a lengthy exertion and it was countered by getting 2 liters of oxygen.  Since you have noted oxygen level drops during sleep, do you have strange headaches, very short term memory loss (sometimes in the AM and are okay in the PM and vice verse other days - no rhyme or reason?).  Could it be part of SJS or something totally unrelated?  I wonder if anyone has an idea?

Take care lady and hopefully you'll be out and about soon!

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: LenV on May 31, 2008, 06:36:32 PM
Wow Lauren,
You sure have been busy while I've had my drama's haven't you??!!  I just read this whole thread and I'm sorry I haven't been here to support you too.  The therapy sounds great and I wish you great luck with it.

It sounds as if you finally have people who will help you.

Best wishes dear Lauren,
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Joe S. on June 01, 2008, 05:08:45 AM
Lauren, Have them PM you and then reply with your address. I usually go as far as my private email account before I give anything out.
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: itssue on June 01, 2008, 01:14:00 PM

I'm so glad to see that you are finally getting the care you so deserve.  Man, it's about time.!!!   

You take care sweetie, and I'm sending you TONS of (((((((((((((((((((((((((((((HUGS)))))))))))))))))))))))),


Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: kimbo on June 01, 2008, 03:20:40 PM
Hey Word,
I'm still keeping up with you. I pray you get strong, think strong and stay strong. Although where ever you are in this health journey, my prayers are for an excellent recovery and DR's who become very concerned for your well being. Make new friends there and think positive.

My husband and I are taking off on our motorcycle for a tour trip to Williamsburg, VA. thru the Blue Ridge PKWY.  So I won't be with my computer for a couple of weeks(http://)
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: JannaLee on June 03, 2008, 02:26:34 PM

You still hangin' in?

Just one tiny little "z" is all I need.
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Tamik on June 03, 2008, 09:17:39 PM
Where oh Where has Lauren gone???  Just checking on you and see you haven't posted in a few days... Thinking about you, Tami K
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: wordnerd on June 03, 2008, 10:40:57 PM
Hey everyone!  I'm still here... although my CPAP did try to kill me last night.  But I'll get to that in a minute...

I'm scheduled to be discharged from Rehab this Thursday!  The Rehab has been a complete success.  Whatever caused things to get messed up after the surgery, I still have no idea, but my physical therapist worked with me to try and isolate the right muscles at the right time.  It was like I forgot how to move my leg and was activating all the wrong muscles or I had to relearn which thought caused which muscle to tense.  But the bottom line is I can walk again!  Yay!  It still takes a lot of concentration though.  The whole thing is just really odd.

In the meantime I'm probably not going to be medically ready to go home on Thursday, so I'll be discharged from Rehab back the regular part of the hospital until we get a few things sorted out.  I'm still having oxygenation issues.  I've been desaturating down to the low 70s sometimes if I'm not on oxygen.  I had a CT that show some partially collapsed areas in the lower lungs, but not enough to explain the desaturation apparently.  I'm having a special kind of ECG tomorrow that looks at oxygenation issues somehow.  So I obviously can't go home until we figure that out.

I also haven't been able to keep anything down the last few days.  Maybe the autoimmune Pancreatitis?  So that's keeping me in the hospital also.

But back to the CPAP... It's said that everything that can go wrong will, but I seem to have some strange magnetic attraction to extremely unusual and often unheard of thing going wrong.  Like last night.  Last night I woke up at 3 am feeling like I was drowning.  Probably because I essentially way.  Water from the humidifier was flowing into my CPAP mask and being forced in my nose.  Luckily I didn't have the full CPAP mask!  I ripped it off and called my nurse.  She in turn called respiratory to come and see what happened and fix it.  Somehow the heater on the humidifier had broken and was pumping water up through the tube to the mask.  The guy from respiratory said he had never heard of that happening and he called his supervisor who hadn't even heard of it either. Go figure.  It's bad enough that I'm having trouble getting enough oxygen during the night and now the day without my CPAP mask trying to drown me in my sleep.

Genko - I was wondering if is autonomic also!  I haven't had a chance to ask my doctor about that yet though.

Patze - I do have weird migraines.  They come on very suddenly when I stand up too fast sometimes.  I also have had issues with my short term memory lately.  Is that the kind of thing you mean?

Billye - No worries!  I hope everything is going a bit better for you!  And yes, it seems there is always something going on to keep me busy :D

Everyone... thanks for the hugs and the chocolate fudge!  Sending hugs right back at you :)  Also some Zzzzz ;)

I still haven't tried the bladder stimulator, so I guess I'll have to see what happens when I turn it on.  Hopefully my docs will let me pull out the catheter and give it a go while I'm still here in the hospital in case it doesn't work and I need to be re-catheterized or have the electrode removed.  The darn thing better work though!  I've gone through way too much to have it be for nothing!  All this just so I could pee!  Sometimes it feels like my life is a case study in Murphy's Law.



Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: JannaLee on June 04, 2008, 05:47:42 AM

Wonderful news all the way around!

I am delighted to hear of your progress.  You inspire me.

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Scottietottie on June 04, 2008, 09:43:30 AM
Hi Lauren   :)

I'm glad you're making progress - and walking again - well done! Take a bow! ( sound of applause ) The hard work paid off. 

Nearly drowning during the night must have been really scary. That's a hec of a thing to happen.

I hope they get to the bottom of the other problems soon so that they can fix you up and you can get home.

Take care - Scottie  :)
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Skylar on June 04, 2008, 12:09:17 PM
Lauren, I'm so glad that you are walking again - that is such an important accomplishment. Thank goodness this stay in the rehab is working.

I haven't had my cpap machine go wonky like yours, but I have had the hose in such a position during the night that water collected in a dip, then I turned over and the water rolled up into my nose - OMG, I thought I was drowning. I'm very careful to keep my hose level.

Thanks for updating us.

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: stegello08 on June 04, 2008, 05:10:55 PM

It sounds like you are on your way to recovery. Great job, and keep up the walking! Your in everyone's prayers.

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: lynnmarie219 on June 04, 2008, 07:23:24 PM
Hi Lauren!

Sooooooo glad to hear that you are walking again! Keep up the great work! You are making such progress! I'm so happy for you!
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Tamik on June 04, 2008, 09:07:21 PM
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Patze on June 05, 2008, 01:46:46 AM
Hi Lauren,

Glad to see that you're doing so much better! :D  Do they know how long you will be in the hospital?

Yes, whenever I get those "migraines", my short term memory also takes a dive - hummm, something else to remember to take to the docs about.

Hang in there and here's a giant gentle hug for ya!

( ( ( ( ( ( ( ( ( ( H U G ) ) ) ) ) ) ) ) ) )

Title: Sjogren's World, we have discharge!
Post by: wordnerd on June 05, 2008, 04:43:34 PM
I am sitting here with my stuff all packed up in those handy "patient belonging" bags waiting for my mom to come so I can go...

*drum roll*


Still got my catheter and a wire cord sticking out of my back (handy for when I get tired and need to plugin and recharge), but I got a clear echocardiogram and bubble study, so I'm out of here!

I'm going to have a nurse, PT, and OT at home to start with.  I'm going to my Urologist on Tuesday to see if we can finally get that bladder stimulator tested.

Somehow I think that this has been a blessing in desguise because with the help of the intensive rehab program here I now can walk better than I could before this whole incident and without a rollator!!!

So I am in high spirits  ;D ;D ;D ;D ;D

I can't wait to get home and cuddle my puppy and sleep uninterrupted in my own bed!  Ahhh that's going to be soo nice!  I don't know how they expect people to get better in hospitals since its pretty much impossible to get a decent nights sleep.

I just want to say THANK YOU THANK YOU THANK YOU to everyone here!!!  You guys are amazing!  I couldn't have done it without you!

I'll check in again soon!

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Scottietottie on June 05, 2008, 05:27:26 PM
Hi Lauren  :)

That is such good news! Great! I love the positive spin you put on things. You really are one in a million. Hope you sleep well tonight.

Take care - Scottie  :)
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Patze on June 05, 2008, 05:30:00 PM
Hi Lauren,

That is SO GOOD NEWS!!!!  Go home and curl up with your puppy now!  And have a great night's sleep!

Take care -

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: lynnmarie219 on June 05, 2008, 06:21:24 PM
Wooooooo Hoooooooooo!!!

Home...your own bed.....and especially that puppy!! Sounds wonderful!

I'm glad that your getting out of there tonight!
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Tamik on June 05, 2008, 08:58:04 PM
That is so great to hear!!! :)  Ahhh I bet you are going to sleep well tonight! Tami K
Title: It's offical!
Post by: wordnerd on June 05, 2008, 09:39:29 PM
I'm officially home and in my own bed  8)

...well its actually a new bed (a long ridiculous story involving tempurpedic medical division and lots of white (and some red) tape) and it really needs some breaking in... I plan to get right on that  ;D

Can't wait to have some peace and quiet to get caught up on the boards, but breaking in the mattress comes first!  A girl has got have her priorities straight :D

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Pooh on June 05, 2008, 09:52:02 PM
Lauren it's so good to hear you are walking again.  And without a rollator,  WOOHOO!!!!! I pray all goes well for you from here on so you can lead a more normal life. 

Hug up that puppy and break in that mattress (both gently) and enjoy the peace and quiet for a while.  You sure deserve it afte the past couple of weeks. 

Take care dear, and come back when you feel absolutely up to it.  Don't push yourself.  We will be here waiting for you.

Hugs and God Bless,
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Katybarstool on June 06, 2008, 12:04:47 AM

I'm so pleased to hear your news. How about saving time - get the puppy to break in the bed. I can just imagine a boistrous young thing jumping all over it :)

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Skylar on June 06, 2008, 12:52:21 PM
Congratulations - there is nothing like being home in your own bed with your own puppy. Heaven.
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: JannaLee on June 06, 2008, 08:51:17 PM
So glad you are home and walking better than before!

I agree this whole experience has given you the benefit of the PT and OT!

You are an amazing young woman!
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: wordnerd on June 07, 2008, 10:50:06 PM
This is going to sound horrible, but being home really makes me realize how much I took being away from my family for granted  :o

Between my sister complaining about how all I do is complain about being sick (I guess she means when I'm not asking about her life and trying to support her through whatever crisis she's having) and how I am completely miserable to spend time around because I'm constantly having a pity party (ouch!) which is why she didn't call me or come visit me the last few weeks of my hospital stay, my parents getting divorced, my mom trying to find a job and an apartment to move into, my dad being intensely melodramatic about our family "breaking apart" and how he's not going to be spending much time with me anymore since he won't be living with me and my mom (um... I'm 24!  If I weren't sick I wouldn't be living with either of my parents and plan to stop doing so as soon as possible).

What a welcome home!

Lauren + her family = STRESS2

Anyway... besides that I've been catching up on sleep and trying to stay sane.  And having quality puppy time  ;D

I can't wait for my Tuesday appointment with my urologist so I can hopefully stop lugging my catheter bag around the house with me!  The vertigo seems to be improving a bit.  I think my family is finally clear that I wasn't doing 3.5 hours of sustained cardio at the hospital or anything remotely like that.  Maybe if they were there a bit more they would have seen that my 3.5 hours of therapy was mostly practice grooming and dressing and short bits of walking and stairs and stretching and other exercises all broken up.  Hopefully my explanations have cleared things up a bit though.

Thanks everyone for all the kind words and support!  *hugs everyone*

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Scottietottie on June 08, 2008, 07:14:47 AM
Hi Lauren  :)

Cuddle that puppy!

I'm sorry you've walked back into all that stress. Somehow you sound as though you're getting things in perspective though. I hope the appointment with the urologist goes well. Keep us posted!

It's sounds as though you have worked soooo hard. It's great that it's got you walking again.

Take care - Scottie  :)

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: LenV on June 08, 2008, 08:57:42 AM
What wonderful news to log into this morning.  You are a brave girl.  I'm sorry for the family stress and I hope it gets better.  Love that puppy.  Puppy love heals a lot of things.
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: irish on June 08, 2008, 07:42:57 PM
Lauren, Yeahhhhhh! What more can a person say. Sleep good and enjoy life! Irish ;D
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Care on June 08, 2008, 08:53:39 PM

Ahhhhhhhhh you are home!  Glad to hear you are out of the "slammer" as I call the hospital.  You will survive the divorce.  I understand the chaos it creates in a family.  Been there, done that.  When I divorced it was a very difficult time,  We were all hurt.  A divorce is not just between husband and wife, it is a family affair.  So much hurt.  But in time it does get better.  But while a family is going through it, everyone is hurt.  I know the parent side of divorce.  It is hard Lauren.  I was not really there for my kids as much as I should have been during the divorce.  But in the end, after years of healing, my kids and I are very close again just as we were as they grew up. They are the sunshine in my life.  We survived and it made us stronger. I divorced in the midst of being very ill.  I look back and wonder how I survived.

We are only here on this earth one time, I decided I was going to do my best to enjoy life to the fullest.   In time Lauren, the hurt will heal.  Try each day to find a positive in life.  Even if it is just looking out the window and seeing a bird fly, flowers in bloom, a clear blue sky.  You are a strong person Lauren, a survivor.  You will make it.

Title: And Finally... A Bladder Stimulator Update!!!
Post by: wordnerd on June 15, 2008, 02:15:57 AM
So I went to the urologist and he pulled out the catheter and hooked up the bladder stimulator with instructions to either go to the ER or get my home health nurse to come and catheterize me again if I can't pee for 10 hours.

But lo and behold... Ladies and Gentlemen of Sjogren's World...

We have SUCESS!!!!!!!!

And not only can I pee normally for the first time in forever, my motility problems seem improved as well!  Unfortunately my urologist is going to be out of the country next week and my mom and sister are going to my cousin's wedding in New York (which I'm very sad to be missing), so I'm still stuck with the hole in my back with a wire coming out.  But I will hopefully have the permanent one implanted soon!

In other news... As soon as I got home from the hospital, my dad came down with a cold and didn't tell anyone.  So I got a cold a few days later.  I'm on 3 immunosuppressants and I can tell.  Not to mention my IgA deficiency.  My dad is pretty much better and I'm still feeling pretty miserable.  I had a horrible migraine for most of the day today and my whole left cheek is very swollen for some reason to the point that it is getting in the way of my teeth and I keep biting it (which isn't helping things).  I'm pretty doped up on pain meds right now as a result and will probably have to go get it checked on Monday.

I had a very very long day on Thursday.  I was sick with this cold but I had two doctor appointments in the city that I had already scheduled months before because they book so far out.  The first was my Rheumy.  We discussed everything that had been going on including the whole hospitalization.  He agreed with me that my current cocktail of meds aren't working well enough.   I'm currently on 5mg of Prednisone every other day, 10mg of Methotrexate once a week, and 200mg of Plaquenil twice a day.  So he's going to have me taper off the Prednisone (thank god!) and the Methotrexate (but leave the Plaquenil for now), so we can switch me to something(s) else.  He also is planning on coordinating with my GP and my Autoimmune Pancreatitis specialist on this.  So now I'm starting the tapper over a two month period.  He also ordered a whole bunch of blood work and referred me to a gyno because we think that my hormones might be out of whack and contributing to some of my problems.

The Rheumy took 3 hours most of which was waiting, waiting, and more waiting.  I just barely got to my next appointment on time.

It was with my Autoimmune Pancreatitis specialist.  I had to wait 2.5 hours to see him.  He was very very apologetic, and I honestly wasn't too upset (just very tired) because when you see the top top doctors in their field they are always super super busy and overbooked.  It's just the price you have to pay to get the best, and that's also why I have a regular GI doc to help me deal with stuff in between.

Anyway he and I had a great discussion about my Autoimmune Pancreatitis.  He feels that the evidence is very very compelling that AI Pancreatitis is the correct diagnosis because of my elevated IGG4 and excellent response to courses of prednisone.  The problem is that I can't stay on prednisone and my AI Pancreatitis is chronic because unlike most people with with AI Pancreatitis (most of whom don't have other underlying AI diseases though) it keeps coming back with a vengeance when I stop taking the prednisone.  Most of his AI Pancreatitis patients have periods of remission for 5-10+ years after 2 months of prednisone.  But those people don't have Sjogren's and several other AI diseases.

So coincidentally he wants me to tapper off of prednisone and Methotrexate also so that we can do a new test for AI Pancreatitis that just came out a few months ago.  It's basically a biopsy of the cells in the entrance to the bile ducts to look for IGG4 infiltrates.  It's the next best thing to an actual Pancreas biopsy which is way way more risky.  He wants me off as many of the immunosuppressants as possible before the biopsy to minimize the chance of a false negative.  He wants to do the biopsy to confirm with certainty that I do have AI Pancreatitis because currently the only treatment for recurrent AI Pancreatitis is a medication called 6-MP which is apparently not a drug to be taken lightly.  I haven't done much research on it yet though.

If the biopsy comes up negative he said that he want to send me to the Mayo Clinic in either Chicago (which is his first choice) or Boston because he explained that he hasn't personally had any experience treating patients with recurrent AI Pancreatitis or with 6-MP and the Mayo Clinic is the best place in the country to go (the best place in the world to go is Japan where AI Pancreatitis is fairly common compared to the US).  Coincidentally my neurologist wants me to go to an Autonomic Disfunction center in Boston also, so I might go to Mayo in Boston to save money on the trip.

It's really nice to at least have a plan.  And I really really appreciate my doctor's candor about where his expertise ends.  He himself is a world renowned specialist in Pancreatic and Biliary diseases, but not Autoimmune ones in particular.  He is also an extremely kind man who feels bad that his status and demand for his services makes it impossible for him to provide the normal degree of follow up care for his patients and instead has to rely on other GI doctors to fill that gap.

Having a doctor who is straight with you is priceless really.

Anyway by the time I was done with that appointment it was nearly 7:30 pm, so my mom and I ate dinner at California Pizza Kitchen accross the street.  I was pleasently supprised to find they had a "new" pizza which was really my old favorite pizza that they had taken off the menu last year.  I'm pretty much never hungry anymore because of my pancreatitis, but it helps when I get to eat somethign really yummy!  ;D

Things have calmed down in my personal life at least.  My mom found us a two bedroom apartment we can afford.  I gave up on trying to get my sister to see why I was so hurt she wasn't there for me in the hospital and have been just trying to enjoy our time together now anyway.  Maybe someday she'll apologize, but I'm not the type to hold a grudge and she's not in a place to want to understand where I'm coming from anyway.

As far as friends go... last night I had a dream that I was sitting in a movie theater waiting for a movie to start next to my former best friend's brother.  I've been a little worried about the apartment my mom and I are moving to because my former best friend lives in the same complex with her brother, so I guess this was what this dream was about.  Her brother and I were making small talk in my dream and I finally go up the courage to ask about my former best friend.  He explained how she actually wasn't living there anymore because she had met this guy and went off to another state to live with him and was having all sorts of problems and he was really worried about her.  So that was my dream.

But today for the first time I'm kinda feeling like screw everybody who has fallen by the wayside.  Who hasn't been there for me.  For the first time I'm not feeling like I did anything wrong.  I'm not feeling like I want to get a hold of those people and make them understand.  Screw them.  I don't want them or need them anymore.  I'm ready to concentrate my energy on finding friends who will be there for me like I am always there for them.  And if I'm alone for a while because I'm trying to recover from a horrible year of being in and out of the hospital so be it.

I feel like I've just put down a whole lot of baggage that was weighing me down and walked away.

So I've been writing more again.  I got a few chapters done on one of my three novels I'm writing while I spent all that time waiting around the doctor's offices on Thursday.  And now I've written a ridiculously long post.  I think I might post the part about the Pancreatitis in the Digestion and Internal Organs section also in case anyone would find it useful.

Scottie, Billy, Irish, Care and EVERYONE... thank you thank you thank you from the bottom of my heart for all of the love and prayers and support you've given me through all of this.  I love you guys!


Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Skylar on June 15, 2008, 07:25:48 AM
Wordnerd, it's wonderful reading that you are doing so much better after all you've been through - especially the update that the bladder stimulater is working.  ::)

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Katybarstool on June 15, 2008, 10:26:02 AM

You have emust have been absolutley xhausted after so long at your doctor appointments. I'm delighted that you can finally have a pee. Well done you.

Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: Scottietottie on June 15, 2008, 11:52:55 AM
Hi Lauren  :)

It's working! YAY! Now to get the hole in your back fixed! It must be a real relief not to taking 15 minutes to pee. With the awful time you had in the hospital it would have been terrible if it hadn't worked too.
Hopefully iy will all be worth it.

I can't imagine a day of two doctors and taking that much time. I'm not surprised you were exhausted. They do sound like they have a plan though - and that they are keeping you up to speed with it (always important!) and I hope it all has a more positive outcome.

I'm glad you feel you've dumped your baggage. I'm certainly glad that you're not blaming yourself - because you never should have been. Nothing that's happened has been your fault. Being ill just isn't a 'blame' thing!

I'm glad you've got back to your eriting because I know you have a real way with words and also a lot more up and down emotional experience than many people your age have and that will make your characters interesting.

Keep posting!

Take care - Scottie  :)
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: eyeamdry on June 15, 2008, 11:54:25 AM
Lauren-I have been reading your travels in this thread and everyone has said just about all the right things!  We have a super group here for listening to us.  You are a very mature young lady and this is shown by your ability to weather all life has thrown at you.  I'm sorry about the mother/father/sister problems, but I secretly suspect we all have some of that in our family.  I'm jealous of your puppy.  (((((((((hugs))))))))) Lucy

P.S. I am glad you were able to pee, too.  :-)
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: lynnmarie219 on June 15, 2008, 06:02:29 PM

I'm so glad that your bladder stimulator worked!!! I'm also glad that your home and things are slowly falling into place for you! It will all work out Lauren....I know it will! You are can do it!
Title: Re: Surgery Update... (or look who's right back on morphine)
Post by: stegello08 on June 17, 2008, 06:56:35 PM

I have been so busy lately, that I haven't been able to get on here and send you a encouraging post. I am so happy to hear you are home, and you are progressing tremendously!!!!

I really hope you get over your cold soon, and hopefully it won't cause anymore problems. Remember to keep your chin up, and be positive...which it seems you are!

Take care!

Hugs and Prayers,