Sjogrens World Forums

Sjogrens Topics => Living With Sjogren's => Topic started by: wordnerd on August 20, 2008, 08:18:56 PM

Title: Hospital AGAIN and other updates....
Post by: wordnerd on August 20, 2008, 08:18:56 PM
I feel bad that I have been around much.  I've had a really bad few months.  The move was stressful and my parents getting separated was stressful.  All my symptoms were flared to the point I couldn't really help with moving at all.  Then I had the last part of my bladder stimulator surgery a few days after moving.  It went fine but afterward my salivary glands started swelling to the point I couldn't keep my tongue in my mouth.  So I had to stay overnight and get a bunch of extra prednisone.

Then last Wednesday morning I woke up at 6am with violent chills, a horrible headache, chest pain, and a fever of 102.1.  I went to see my doctor who saw me for about 1 minute before sending me over to be admitted to the hospital.  They started me on two IV antibiotics as a precaution since I'm on several suppressants.  It turned out to be a good thing because my blood culture came back positive a few days later.  So I'm back in the hospital AGAIN.  This time with a blood infection.  Complete with a pic line.  According to the infectious disease doctor I'll get to go home Sunday or Monday if everything goes smoothly.

And then when I kick this infection and get to go home, I'll probably be starting on something like Rituxin because my AI stuff is just so out of control I can't function.  I haven't been even wanting to get up to go to the bathroom because I've been in so much pain.  But this has been a scary taste of what its like to get an infection when you are immunosuppressed.

Between all of this (and tons more that I don't even have the energy to write about) I haven't been able to devote much time to Sjogren's World.  And what time and energy I have had I've been needing to spend doing things that have nothing to do with my health issues.  Because it feels like pretty much my whole life right now is consumed with my health issues.

So I've decided to leave the moderator position and go back to being a regular member of Sjogren's World for now.  I really appreciate how much everyone here has been there for me!  You've all given me so much!  But I haven't been able to give back that way lately.  So I feel like this is the right thing to do.


Title: Re: Hospital AGAIN and other updates....
Post by: irish on August 20, 2008, 08:35:13 PM
Lauren, I had noticed that you weren't around hardly at all lately. It is summer and I knew that you were busy so figured all was half way well. Well, I figured wrong and I am so, so sorry that you have had such a hard time. It iseems like when it rains on you it is like a bucket of water being dumped for hours.

Just too much stress in your life lately. Moving is hard enough for a healthy person and I can't imagine how hard it must have been for you. When a person has to depend on others to do things it really is stressful. You want to do it and then the guilt because you can't is terrible. We know that you sure aren't trying to get out of work and I would think that everyone else understands that your health interferes many times.

It sounds like the infection is getting tamed down. I would imagine you will be on the PIC line for a few weeks at least. Hopefully, the Rituxin will get your immune system in order. You must have to just keep trying meds until you find the stuff that will work.

I am sorry that your parents are getting divorced, but with all your health issues I would assume that you are at the point where they will just have to deal and cope with this on their own. As Dr. Laura would say, they are grown-ups and have to take the responsibility for their own behaviors. Maybe when all this is over things will be less stressful for you.

It is too bad that you had to quit being a moderator, but I understand completely. I was a moderator for a year or so(can't even remember anymore how long it was) and when my health was getting worse I just had to quit. The important thing is that you take care of yourself. We all love it when you are able to post as you have much interesting information. So just rest and get well and when you feel up to posting do so. We all understand. I will keep you in my prayers. Hugs Irish ;D
Title: Re: Hospital AGAIN and other updates....
Post by: wordnerd on August 20, 2008, 08:51:10 PM
Thanks Irish!  It feels like its been a deluge lately.  But I try to let all the stressful stuff flow past me and not let it bog me down and dampen my spirits (to use a lot of ironically wet metaphors for my very dry life :D ).  This too shall pass.  Go with the flow.  et al

Its actually been less stressful already without my dad around.  I would say you are right on about the guilt.  I am my own worst enemy in that regard.  But somehow I'm coping.

Thank you for understanding.  Hopefully after I take some time to take care of myself I will be able to be here more the way I want to be.  Interesting info and all :) 


(Also.... I know there are several PMs that have gone unanswered!  I'm really sorry, and will try to answer them as soon as I can!)
Title: Re: Hospital AGAIN and other updates....
Post by: Linda196 on August 21, 2008, 05:27:14 AM
The first rule of helping others, is to keep yourself well enough to do so! So sorry you've been flooded with these problems, physical and emotional. Not much wonder you are so sick...moving and parental discord would effect even healthy people, throw in surgery and infection on top of chronic illness and it shows what an incredibly strong woman you are to even consider volunteering here!

We'll look forward to your "full time" return, knowing it means your life is ordered again, and you are feeling healthier. Meanwhile , post when you can, but don't over-do!
Title: Re: Hospital AGAIN and other updates....
Post by: downrabbithole on August 21, 2008, 11:41:57 AM
I am so sorry about your health issues. My prayers and thoughts are with you. You are such a sweetie and deserve nothing but the best!
Title: Re: Hospital AGAIN and other updates....
Post by: Katybarstool on August 21, 2008, 01:14:15 PM

I am delighted to see you posting again, although very sad that you have been so sick and stressed out.  Look after yourself, honey, and we will be here anytime you want to chat.

Title: Re: Hospital AGAIN and other updates....
Post by: Victoria05202000 on August 21, 2008, 01:17:32 PM
I hope you get to feeling better soon.  I will keep you in my thoughts and prayers.

Take care!
Title: Re: Hospital AGAIN and other updates....
Post by: Skylar on August 21, 2008, 01:32:04 PM
Hi Lauren, I'm so sorry that your back again in the hospital. Hopefully with the move and your parents' divorce behind you, you can work towards getting healthy again. (((HUGS)))
Title: Re: Hospital AGAIN and other updates....
Post by: Scottietottie on August 21, 2008, 02:19:59 PM
Hi Lauren  :)     (

Good to see you! I was worried about you. You just take care of yourself and don't worry your head about sjogren's world. We'll still be here when you're feeling fitter.

Take care - Scottie  :)
Title: Re: Hospital AGAIN and other updates....
Post by: Patze on August 21, 2008, 03:22:30 PM
Hi Lauren,

I'm sorry to see that you've had so many problems lately, wow, and you didn't kill anyone either?  You're good!!!! ;) ;D

Hey, put your efforts into getting better as we'll be there when you're ready.

Please take care -

Title: Re: Hospital AGAIN and other updates....
Post by: genko_b on August 21, 2008, 03:25:50 PM
Thanks for posting to let us all know how you are doing. But sorry it is because of all the stress and sickness. I really hope things begin to get better for you soon - you certainly deserve a break!

Title: Re: Hospital AGAIN and other updates....
Post by: wordnerd on August 21, 2008, 03:29:07 PM
Thank you everyone!  Its good to know all of you are thinking good thoughts for me!

Title: Re: Hospital AGAIN and other updates....
Post by: Carol-D on August 21, 2008, 06:37:44 PM
Bless your heart, Lauren....sorry you're going through all of this.  All my good thoughts are coming your way...Carol
Title: Re: Hospital AGAIN and other updates....
Post by: lynnmarie219 on August 21, 2008, 07:54:39 PM

I'm sending lots of positive thoughts and hugs your way! I hope that you are back to feeling better soon and we will be here when you are ready to come back!

Please take good care of yourself.....( (
Title: Re: Hospital AGAIN and other updates....
Post by: pudmott on August 22, 2008, 04:49:39 AM
Hi Lauren,
We haven't actually met yet, i've only recently returned home to the community. I am sorry to hear you have been unwell. Concentrate on getting yourself better and get back when you can. There are lots of us here and are happy to help out when and where possible.
I hope you continue going from strength to strength and get well. It sounds like the docs have things happening ok with the medical stuff. the head stuff is up to you. Allow yourself to relax and recoouperate. Taking time out is not failing or coping out. its is wisely recognising that you need to recharge before moving on. heed what your body tells you. Even if the messages get a bit scrambled along the way....

Hope you are feeling better soon

Title: Re: Hospital AGAIN and other updates....
Post by: itssue on August 22, 2008, 12:49:32 PM

It was great to hear from you again, but not great to hear the news.  I hope this horrible flare gets under control soon.

You take care of YOU, and don't worry about anything else.  We all care for you and will be sending you tons of good wishes and HUGE & PLENTIFUL (((((((((((((((((((((HUGS)))))))))))))))).

Take care Sweetie,

Title: HELP I don't know what to do!
Post by: wordnerd on August 23, 2008, 12:34:59 AM
So I laying here in the hospital and it after midnight and I have numbness in the left side of my face that's spreading down to my left arm and chest.  It started about an hour and a half ago.  My left side of my face started to feel like it has novicaine in it.  Now I feel that sensation all the way down my left arm and in my tongue and the left side of my chest.  I told the nurse about it right away and she kept insisting that it was from being on my computer too long and that I should take a break.  Finally I convinced her that it had nothing to do w/ my eyes being tired.  So she paged the doctor on call who took 1.5 hours to call back and when he finally did all he said was to give me an Ativan for anxiety.

I really hope that this is all from anxiety!  But I'm really worried that it's something else.  I called my mom to ask her what to do and she just got mad at me for calling her so much complaining about problems and that she's at home and wants to go to bed and if it were serious then the nurse would do something!  When I told her that I only spoke w/ her about one problem today she just started backtracking and rationalizing herself.  She she was no help at all.

So now I just don't know what to do.  But I'm afraid to go to sleep with this going on.  I'm in a room by myself.  I'm not on a monitor.  If something bad happened no one would come in until tomorrow morning to check on me.

I really hope this is just a panic attack and I'm getting all worked up and upset over nothing!  But I've never had a panic attack before and I've never had this happen before.  And I just don't know what to do!  I'm really scared and I don't feel like anyone is helping me or making sure I'll be ok.  I don't see how "here have an Ativan" is adequate to make sure this isn't something more serrious than anxiety!

I really need some reassurance that everything is going to be ok!  :'(
Title: Re: Hospital AGAIN and other updates....
Post by: Linda196 on August 23, 2008, 04:04:10 AM
Lauren, it's been a few hours since you posted, but I hope that either the Ativan was sufficient to help you settle, or someone took you more seriously, but that you were able to relax a bit, and get some rest.

I get sensations like this frequently, and the first times were terrifying and I had my husband take me to the ER the first time, which was 2 weeks after I was discharged following a stroke. Once anECG, EEG and CAT convinced me that it wasn't something lethal or an extension of the stroke, I gradually learned to live with it.

Every instance of something like this is individual to the person experiencing it, and I sincerely hope it is investigated thouroughly if for no other reason than to give you peace of mind.
Title: Re: Hospital AGAIN and other updates....
Post by: Scottietottie on August 23, 2008, 09:21:08 AM
Hi Lauren  :)

Please post again - I want to know you're OK!!

My BIL used to get that sensation before a migraine. I hope it wasn't the build up to a migraine but I hope whatever it was has backed off now.

Take care - Scottie  :)
Title: Re: Hospital AGAIN and other updates....
Post by: wordnerd on August 23, 2008, 01:11:28 PM
Finally after the Ativan unsurprisingly did nothing to help, the nurse called the on call in house doctor who came by to examine me.  By this point I was having numbness down my left leg as well.  He took me seriously but also said that since I wasn't showing any signs of muscle weakness with it he wasn't too worried that it was life threatening.  So he arranged for a neurologist to come see me today.  I'm still numb today.  Hopefully the neuro will  come soon and give me some answers.

I'm also exhausted from being up late and I had a ultra sound early this morning to try to figure out the cause of the severe pain in my left side.  It apparently didn't show anything.  I'll keep you all posted....
Title: Re: Hospital AGAIN and other updates....
Post by: pudmott on August 23, 2008, 07:42:40 PM
Hi Lauren,
This must be so so scary for you. I hope they find outwhat is going on soon. Isnt it amazing how "It's only anxiety" is the diagnosis that fixes everything. I will keep my fingers crossed and send out lots of positive thoughts and prayers for you.

Take Care

Title: Re: Hospital AGAIN and other updates....
Post by: lynnmarie219 on August 23, 2008, 08:53:39 PM
Hi Lauren,

I hope that you get some answers the time you see this maybe the neuro has already helped out and did some more investigating and found some more information and answers for you!

In the meantime please try to get some rest.....your body sure needs the break!

Still thinking about you.....let us know how you are when you feeling up to it!

More hugs to you........
Title: Re: Hospital AGAIN and other updates....
Post by: wordnerd on August 24, 2008, 11:39:55 AM
Thanks everyone for continuing to be so supportive!  I'd be lost without you!

So yesterday I saw the neurologist who was covering for my neurologist.  He feels like this is most likely part of my Sjogren's.  I'm not having any muscle weakness, so he doesn't think this is a stroke or anything like that.  He ordered a brain CT just to be sure (and I had that done last night at 2am... kinda tired this morning!)  He thinks that my loss of function in my legs several months ago was also part of the neurological aspects of Sjogren's.  Unfortunately he didn't seem to think there was much that could be done about it if that's the case.  Though he thinks it will probably go away eventually on its own for now.  He also thought that in light of this and everything else I really should be started on much stronger immunosuppressants to get all of my AI stuff under control.  Of course that has to wait until I am totally clear of infection.

My blood infection seems to be gone now.  My last day of antibiotics for that is today.  Just in terms of that infection I could probably go home tomorrow.  However, I started having really really severe pain that goes from my bladder to my left side flank area.  It pretty much feels exactly like when I've had kidney infections.  My infectious disease doctor told me that my latest urine was fine though.  But then the doctor on call for my PCP looked at the same lab report and said that it was positive for a very small amount of E Coli.  The amount was way smaller than what would normally be considered an infection, but given my history with atypical UTIs and all the IV antibiotics I have been getting he decided to repeat the urine test.  I'm still waiting to hear back on that.

So now I may have a kidney infection too.  Plus I still haven't been able to eat and am nauseous all the time.  My GI doctor ordered a stool culture to check for an infection there...

In addition, I've been feeling rather depressed. None of my extended family has even called me to see how I am.  I feel like when something is an acute illness people are there but when its chronic like I have people just forget about you.  When my uncle had cancer everyone was constantly calling him and visiting and stuff.  I don't know.

I also feel really angry that my PCP implied that the stomach pain is either all in my head or just a ploy to get more pain meds!  I feel like no matter how many times my medical complaints turn out to be very really physical health problems, that "its all in your head" card won't ever be taken off the table!  He also implies that I want to be really sick and have reason to be in the hospital.  I'm so frustrated with this perception that I'm ready to scream and/or cry!  I HATE being sick.  I HATE being needy and dependent on others to take care of me!  I HATE HATE HATE it!  My personality is such that if something is going wrong in my life I don't to have to share that with anyone.  I hate having people see my weaknesses. I hate being vulnerable like that.  In the pasts I've even gone to unhealthy lengths so keep my family and friend from knowing when I was struggling with something in my life and needed help.  So being accused of that kind of thing is basically the most hurtful thing someone could say to me.  And it happens ALL the time!  I don't know what is wrong with people that they don't see how much I hate this.  I especially hate having to need things from my mom!  She doesn't react well when people need something from her.  She never has.  I spent my whole life trying to not need things from her and in fact take care of her needs so that she would remain calm in our relationship.  So being too sick to care for myself is like torture!  Its a constant brutally cruel reminder that my mom can't ever fulfill my emotional needs!  Why on earth would I purposefully keep myself in this horrible situation?!

I don't really know where I'm going with this, so.... I guess that's it for now....

Thank you so much for being here for me!  I love you guys!

<3 Lauren
Title: Re: Hospital AGAIN and other updates....
Post by: pudmott on August 24, 2008, 02:02:30 PM
Lauren Honey,
I am feeling your pain and frustration. Its so hard when the world around you doesnt understand what you are going through and even worse when your family arent there for you. Im so glad you have this place and all the wocderful people here who understand and can sympathise with you. Even if we can physically get to you. I know i for one if i wasnt onthe other side of the world would be there like a shot.

I hope things start looking up for you. Take care

(((((((((big aussie hug))))))))))))

Title: Re: Hospital AGAIN and other updates....
Post by: Victoria05202000 on August 24, 2008, 02:09:37 PM

Hang in there girl!  I hope this nasty flare ends soon for you.  I sometimes get a "quiet" shoulder from people....I don't think they know what to say. 
Take care!
Title: Re: Hospital AGAIN and other updates....
Post by: wordnerd on August 25, 2008, 10:47:40 AM
Awww thank you Pud... it made me feel all warm and fuzzy to read that.  And I feel the same about everyone here!  I would be there for you in a heart beat if I could!  *hugs*  And thanks Vicky for your support and letting me know how you can relate.  Its nice not to feel all alone in feeling like the people in my life leave me alone to deal with this stuff sometimes.

So.... its Monday.  Now the word is I'm going to be going home tomorrow probably.  I'm still having really severe pain in my left side of my stomach.  My last urine was fine though, so once again its a mystery!  I'm still having vertigo, and I'm also having desaturation problems.  I've been on 2 liters of oxygen for almost 2 weeks (the whole time I've been in the hospital) because I haven't been staying saturated for some unknown reason.  Yesterday though I was having even worse vertigo (I felt like I was on a boat in the middle of a storm or something) and I asked my nurse to check my oxygen just in case that was causing it.  Sure enough my oxygen level even on 2 liters was down to 94%, so the nurse turned my oxygen up to 2.5 liters and when my oxygenation improved so did my vertigo.  The this morning we tested what my saturation is without oxygen on and without it on I felt really short of breath and was breathing heavily and only maintaining 92-94%.  So I don't know what's up with that.  I'm back on oxygen now but I'm not sure how this is going to affect going home tomorrow.  My pulmonary specialist/uncle is supposed to be coming by later to see me about it.

In addition I'm still really nausous and unable to eat or drink normal amounts.  My PCP wrote an order for my PICC line to come out today even though I'm not supposed to go home until tomorrow, but my nurse is calling to discuss it with him because I'm still getting IV fluids since I can't eat or drink enough and I'm still getting Zophran and extra Morphine by IV.  Also even if he discontinues that I don't understand why he's have it taken out the day before I leave in case I need more IV meds for any reason since I'm nearly impossible to start an IV on.

Plus I'm probably starting Rituxan in a few weeks (once we make sure that I'm continuing to be infection free) and will probably need a PICC line for that.  But of course I haven't been able to really discuss any of this with my PCP because he doesn't really listen to me or want to take the time to discuss these issues with me.

Last night I called my uncle/pulmonary specialist who is also my PCP's partner about how he has been treating me and he said he'd talk to my PCP about it.  I guess he did because when my PCP was here this morning he kept saying, "If I didn't take you seriously, you wouldn't even be in the hospital." But he also insinuated that I expect him to treat my stomach pain as an infection even though there's no evidence that it is an infection which of course I don't.  I just don't want him to act like its a figment of my imagination just because we don't know what's causing it yet.  He also said that most other doctors who have seen me think that most of my illness in is my head.  But when I asked him what of my physical complaints have turned out to be in my head he wouldn't answer.  And then he got mad at me because the on call neurologist ordered a CT of my head just to be careful because of the numbness on the left side of my face (which I'm still having btw).  He acts like I demanded he do a CT or something.  It wasn't even my idea!

Anyway.... hopefully tomorrow I'll be going home even if some of these issues aren't resolved.  The hospital is such a stressful place for me especially because of my life threatening allergy to latex.  Multiple times every day I stop people who are coming in my room wearing latex gloves!  The only reason I'd want to be in the hospital (as my PCP keeps implying) was if I had a death wish!

Thanks everyone for continuing to be there for me!

Title: Re: Hospital AGAIN and other updates....
Post by: pudmott on August 25, 2008, 03:47:08 PM
Hi Lauren,
I hope you get to go home tomorrow. You will be much more comfortable at home and maybe get some more rest. It is so hard to get across to doctors what you are feeling. They think you thrive on these problems and want these invasive tests. I bet if it was them they would want every investigation known to man. I know when we have had drs relatives in my hospital they demand every conceivable test for the most rediculous things and rant and rave if there isnt an answer they perceive to be satisfactory.
I hope you find some answers soon. I will continue to keep you in my thoughts and prayers

Title: Re: Hospital AGAIN and other updates....
Post by: Dolly Dimples on August 25, 2008, 04:05:10 PM
Phew! Lauren, what a time you are having right now.... Your experience of people around you is a typical reaction that we here have all shared before... from family ,friends, even the medics give us a hard time.. but we here, as ever  sure do understand, Sending understanding hugs,  and all good wishes for you at this awful time.. Prayers also will be sent your way......G 'night.. Luv Dolly.
Title: Re: Hospital AGAIN and other updates....
Post by: wordnerd on August 27, 2008, 12:22:09 AM
Well I'm still in the hospital!  And now I have no idea when I'm going to be able to go home  :'(  My infection seems to be gone, but a whole bunch of new problems have cropped up.  I still am having numbness on the left side of my body.  I'm still having severe pain on the left side of my stomach.  I'm having even worse vertigo then before, and my oxygen saturation is getting worse.

Yesterday I was having worsening vertigo again and my oxygen was low again so my nurse turned up my oxygen to 4 liters which seemed to help. But this evening my oxygenation dropped down to 96% while wide awake on 4 liters.  So I have no idea what's going on with that.  My doctors haven't been believing me when I tell them about this until my mom collaborates my story.  Now I'm again afraid to go to sleep!  I have sleep apnea so I'm worried what my saturation will be asleep if its bad when I 'm awake!  And even though I'm in the hospital, I'm not in a monitored bed,.

Also last night my uncle was supposed to talk to my PCP about the way he's been treating me, but when my PCP came today he was the same jerk as usual.  So I just snapped and told him how horrible he makes me feel about my already horrible life right now and I was crying the whole time.  After that his attitude seem to change but he still left without explaining anything or communicating a plan to get me better and out of the hospital.

I'm too tired to keep writing this update even though theire is a lot more to tell.  Has to wait till tomorrow like everything else I guess....

Title: Re: Hospital AGAIN and other updates....
Post by: pudmott on August 27, 2008, 04:13:13 AM
Lauren honey do you have a cpap mchine? If you have sleep apnea they should have you on one. That should keep your sats up while you sleep and give you some peace of mind.

I sure hope you find some answers soon. i can only imagine your frustration and dispair at this time, especially with uncaring medical staff. Don't they realise that they are only adding to your suffering.

I'm sending you more hugs and kisses

Title: Re: Hospital AGAIN and other updates....
Post by: JannaLee on August 27, 2008, 06:38:21 AM

I would give anything to be there with you!

We all love you so much and know EXACTLY what it is like to have one thing after another on the health front! And the medical people acting like it's all made up.

I am so sorry this terrible stupid disease process has your little body in such a state!  It makes perfect sense that your previous walking problems could be neuro complications of sjogrens and I am wondering if you could get that new neuro guy to take you?

I am very frustrated over this.  Too bad we don't all get a "Fairy Godmother/medical advocate" when we are dealing with insurance and overworked medical people!

The good news is that you are more than a little bit smart.  Try to keep asking for what you need.

Sending you empathy and wishing your disease to calm down!
Title: Re: Hospital AGAIN and other updates....
Post by: wordnerd on August 27, 2008, 11:22:07 AM
Yeah I have a CPAP machine that I wear at night both at home and here.  The problem is I don't think my usually settings are going to be adequate with my current saturation problems.

I was so anxious last night that something bad was going to happen in my sleep and no one would notice.  I wanted my mom to call my uncle/pulmonary specialist last night about whether I should be on a O2 monitor while I slept since he doesn't listen to me either unless my mom collaborates my story.  But my mom didn't want to do it and asked my dad to do it since he's living w/ my uncle (his brother) since my parents separated.  But apparently my dad didn't want to do it for some reason.  So my mom called me to tell me how pissed off she is at my dad and was insisting that I call if I wanted to ask him about it.  But I was too anxious to call him since he doesn't listen to me.  And my mom was really mean about it and criticized me for being so anxious and hung up on me.

In addition my anxiety was made even worse because yesterday psych came by and prescribed a new anxiety med to help but the pill turned out to have yellow dye in it which I am extremely allergic to.  Of course the pharmacy didn't check it for yellow dye and so when I was taking my night time meds I was about to dump the whole cup of pills in my mouth when at the last second I saw a new yellow pill in there and stopped in the nick of time.  So not only did that make me SUPER anxious that I was a second away from anaphalaxsis but then I didn't have any anxiety med to take!  And the nurse paged the on call psych about it but they didn't call back and still haven't!

After that I was soooo anxious and needed to talk to someone but my mom had hung up on me and wouldn't answer her phone, so I called my sister which was clearly a big mistake.  She was really really mean to me also mostly because she was about to get ready for bed and mad that I called at 11:30pm.  So I got off the phone with her.  Then this morning my mom tells me that my sister called her last night upset that I called her and she wants to change her phone number so I can't call her!  My mom also said, "See you didn't die last night!"  in a really nasty voice.  Ouch!

While I was typing this my neurologist came in and he said he might do a PET scan so see what's going on.  He said the numbness and vertigo could be autoimmune and possibly vasculitis in the brain stem.  I also asked him about my desaturation and how it feels like when I am walking or doing something that requires more oxygen my brain isn't telling my lungs to breathe deeper or faster and then I desaturate.  He said its really a really usual complaint but it could be a neurological problem like I suspect it is especially since all my lung tests are normal.  Then my sleep apnea doc came in and he's going to test my O2 levels resting and sitting and walking without oxygen and then if I need oxygen he said I should be started at 1 liter and then retested and then increased 1 liter at a time so I'm not on too much oxygen.  Yay for doctors who don't write me off!

Pud thanks so much for your kind words and being so understanding!  Reading your reply made me feel a lot better.

Janna you're right I do need a fairy godmother of medical advocacy!  Thank you so much for understanding and always being so supportive!  It means the world to me <3

*lots of hugs*


P.S. I found out that I finally got my hearing date for my SSI appeal... it's in over a year from now!  Time to start writing letters to my congress people!
Title: Re: Hospital AGAIN and other updates....
Post by: pudmott on August 28, 2008, 03:57:17 AM
Hey Lauren,
I'm glad someone is finally listening to you. Hopefully they might find out what is going wrong and at least do something to temper the symptoms. You are lucky you're on the ball with the tablets. It muust have been a big scare knowing you came close to taking something like that. Obviously someone is looking upon you and helped you our there.
I'm sorry you are having trouble with your family. Some people just do not understand chronic illness and anxiety. Having both of them i definately understand where you are coming from. I have lived all my life with anxiety and have just learnt to control it and now i have this chronic illness that is going to effect me for the rest of my life. its great that you are putting your feelings down here in a supportive environment. Please continue to do this cause half the battle is getting thoughts out of your head. It helps to sort things out.

I hope you get some answers. Please let us know what they say. I hope you have had a better night and got some much needed rest. Hang in there buddy.

Title: Update
Post by: wordnerd on August 28, 2008, 11:15:13 PM
So today was a bit better anxiety-wise.  My mom came this afternoon and evening and was here when most of my doctors came which was really helpful.  She was also just generally more supportive today.  And I've had a bit more social interaction since yesterday which was really nice.  A really old friend from middle school and high school came to visit yesterday afternoon.  She even brought me a bunch of little gifts!  And then today my favorite cousin-in-law called me.  It really helps not to feel so isolated when things in my life are so bleak.

Physically though, today wasn't so great.  My vertigo got really really bad starting last night.  At first I thought it was an earthquake until I observed that nothing in the room was shaking.  I basically feel like I'm on a boat in choppy waters.  It feels like the ground keeps dropping out from under me.  Not fun!  It also made walking in physical therapy today extra challenging because I just couldn't balance.  I also had worsening stomach pain today and had to get my pain meds increased to tolerate it.  I tried to eat some jello and crackers for dinner tonight and just threw them up.  :(

My GI doctor has switched me to an all Ensure diet for now, but he's deciding whether I need to have a feeding tube put back in or if I have to go back on high dose Prednisone or what.  I'm not too happy about that either.

My neurologist says he's pretty sure that my vertigo, numbness, oxygenation problems, and ect are from autoimmune inflammation in the brain stem.  I'm having a SPECT scan tomorrow to see if it shows anything, but apparently the kind of inflammation in the brain he thinks I have often doesn't show on any imaging tests.  Fortunately though he said that it usually responds well to steroids.  Really scary though to think that I might now have autoimmune involvement in my brain!  My thyroid, pancreas, liver, and now maybe my brain!  What's next?!   :'(

Oh well.  What can I do?  I just have to figure out how to deal with things as they come...  I don't really get a say in the matter.

Well it certainly doesn't seem like I'll be getting out of here before the long weekend.  Sigh.  I need a hug.

Title: Re: Hospital AGAIN and other updates....
Post by: irish on August 28, 2008, 11:43:39 PM
Lauren, I am so sorry that you are going through all this stuff again. The oxygen sats have me puzzled. Generally people don't need to go on O2 unless they have 02 sats below 90. A blood sat of 94% is fine in most people. It is very rare that people will have a sat of 98 or 99%.

I don't understand what is going on there and hope that they can sort it out. Have you ever asked about IVIG? With all the neurological problems you are having you would probably pass the protocol to be placed on the gamma globulin infusions. They can do the infusions along with some of the other big gun oral medications. I would ask about this.

Hopefully you will find out something. Also, do you have an IgA deficiency???? If that is the case I think they can use only certain products to infuse you with. It also explains your problems with infections. Hang in there---at least you had a good neurologist who admitted that the stuff was related to sjogrens. I would want him for my neurologist. I would think that you watch TV any time of the day or night to take your mind off your ailments. Here's a big hug for you and tell your Mom that Irish says that she should lighten up!!!! ::) Irish ;D
Title: Re: Hospital AGAIN and other updates....
Post by: wordnerd on August 29, 2008, 12:03:21 AM
Thanks Irish!  Yes I do have an IgA deficiency.  You're right, between it and the immunosupressants it does explain a lot about the infections.  Good to know that it might limit what I can get for infusions, but I will definitely be asking my docs about IVIG!

I'm not surprised the 02 stats have you puzzled.  I was desating below 90 intermittently which is why I was on oxygen and then since I'm not being constantly monitored when my saturation was in the low 90s my nurses (lazily) turned up my oxygen.  I just found this all out today when my pulmonary specialist came.  So now I'm off oxygen at the moment because my 02 is ok right now.  My lungs themselves are completely fine so he agreed that what ever is going on in my brain could be causing the intermittent saturation drops.  And now he wrote orders not to just keep me on oxygen all the time and to check my 02 more frequently and if I feel like its low and then give me oxygen or not accordingly.  He wasn't too happy that the nurses had just put me on oxygen indefinitely.

And I do really love my neurologist!  Having one who a)believes you and b)thinks outside the box about what might be going on is priceless!

I really don't want TV that much.... the hospital doesn't have that many channels and I'm frankly rather burned out on TV.  Mostly I surf the web, chat with friends online, play computer games, and work on my writing.  In other words... my laptop and I are attached at the hip  ;D

But yes distraction is key to coping.  Especially since I have OCD and am prone to obsessively worrying about everything.

Thanks for the hug! *hugs back*

Title: Re: Hospital AGAIN and other updates....
Post by: Seeker on August 29, 2008, 01:16:30 AM
Hello Lauren I have been following your adventures, I think you are a very brave young lady.  Since you like to surf the net so much, have you tried a web site called the internet archive?  I like it because I can listen to Free audio books and Old time radio programs plus much more. I like the Old time radio programs best.  When I listen to them I feel like I am really there.  Have a wonderful day in the neighborhood.  I am glad you are our part of our family.

Seeker  ;D
Title: Re: Hospital AGAIN and other updates....
Post by: irish on August 29, 2008, 09:11:54 PM
Lauren, Ask your neuro if you would benefit by going off the immunosuppresants and doing just the IVIG. My immunologist won't put me on the DMARDS because of my low t-cells. He says that the IVIG helps the neuro symptoms and he is right. I have had improvement in neuro symptoms that I figure were from the sjogrens. The MG is also treated with IVIG and responds well.

I have been a very slow responder to IVIG and my doc asked me if I was losing patience. I told him that I had been ill for so many years and had the severely high blood work and I just figured it would take a lot longer for me to improve. I was right. It will be 2 years in November and I have just started to feel some better. I don't expect to feel as well as other patients because I was ill for so long.

Interesting stuff about your 02 sats. The nurses aren't supposed to be increasing the oxygen without checking with doctors either. People can get 02 dependant and it can screw up your bodies response to the CO2 which drives respiration. Take care and hang in there girl. We are all pulling for you and with a good neuro and modern technology change can happen. irish ;D
Title: Re: Hospital AGAIN and other updates....
Post by: wordnerd on August 29, 2008, 11:35:50 PM
So I had my scan today and it came back fine.  Go figure.  The neuro didn't really feel it changed anything though.  Apparently its really really hard to see the kind of brain inflammation he thinks I have in any imaging scans.  And even more so in the brain stem. 

Apparently the only way most people are able to be 100% diagnosed with this is through a brain biopsy!   :o  I think I'll say NO THANKS to that!  It'd be one thing if I had NO other autoimmune diseases and they wanted to be sure before starting me on heavy duty immunosuppressants, but since I need them for the Sjogren's, AI Pancreatitis, and AI Hepatitis anyway, I'd much rather the surgeons keep their sharp pointy objects away from my precious brain.

My neurologist left me this evening to ponder what immunosuppresant treatment to give me.  He did think that the IVIG was a good possibility but still seems to be leaning towards Rituxin (which is what I was probably going to be starting anyway before this infection hit).

In the meantime, I haven't been able to keep much down in the way of food and my stomach pain is off the charts.  My GI doc switched me to a diet of only water and Ensure starting today.  So far that's stayed down... with the help of lots of IV Zofran.  My pain is not being well controlled at all however... largely because my PCP is totally anti-pain meds and keeps accusing me of exaggerating my pain levels to get more pain meds!  He has my pain management doctor afraid to up my pain meds and lecturing me about how morphine isn't Tylenol!  Really?!?  I'm not thrilled about being on narcotics again but there's only so much pain I can take for so long.  And last time I had a big flare of AI Pancreatitis I had to be on insane amounts of morphine via a morphine pump!  I'm not an addict but I'm definitely tolerant and require a higher dose.  I don't expect to get much sleep tonight.   :'(

So I guess I'm here through the long weekend.  Sigh.  At least since I'm going to be here next week I can see the new rheumy my uncle found for me cause he'll be back from vacation.  ...poor attempt at a silver lining but.... oh well

Seeker - Thanks for letting me know about that website!  I will certainly check it out :)  And I don't really feel brave.  I don't really feel like I'm brave since I don't have a choice.  I try to keep a positive attitude about it though because even though all of this totally sucks being angry and upset about it all the time doesn't make it suck any less.  I like to say... If my life is going to suck, I might as well enjoy it! :D

Irish - Thanks for the info and encouragement!  And thanks especially for reminding me to be patient, put things in perspective, and keep my eye on the prize.  Its easy to feel like this has been going on forever and is never ending as a 24 year old who's spent the last year in and out of the hospital (and the last 7 years not able to live a normal life), but if I get better and live to be 100 it doesn't seem so bad. :)

Title: Re: Hospital AGAIN and other updates....
Post by: Seeker on August 30, 2008, 01:00:55 AM
Well Lauren you made it through exciting another day.  You can pat your self on the back, you deserve it.  I know that tomorrow you are going to be a blessing to some one you know and others who you don't know.  We will never know on this earth how we have helped and encouraged others through our example.  Always have a smile on your face and love in your heart for others.  Be a Sunbeam in some one's life.

Title: Re: Hospital AGAIN and other updates....
Post by: pudmott on August 30, 2008, 01:37:38 AM
Hey Lauren,
I hope they get your pain under control and you manage to get some sleep. Glad you are getting a new Rheumy and your neruo is understanding.
Definately keep the surgeons and their sharp pointy implements away from your precious little brain. It might not be firing on all pistons right now but its the only one you got.
Glad your mum came in to support you today. Lets hope tomorrow brings some more answers and progress for you

Title: Re: Hospital AGAIN and other updates....
Post by: lynnmarie219 on August 30, 2008, 06:51:43 PM
Hi Lauren!

Lots and lots of hugs being sent to you! ( (

I'm also glad that you finally had some visitors and that it made you feel a bit better to talk to your family and friends! Please know that you are in my thoughts and prayers.....I hope you can get this resolved soon so you can go home.

Hang in there...and in the meantime...we are here if you need us!
Title: Re: Hospital AGAIN and other updates....
Post by: irish on August 30, 2008, 10:04:07 PM
Lauren, You did make it through another night. Sounds like your neuro is the BEST guy to keep around. Sounds like he has a head on his shoulder and is thinking. Ask him about doing the Rituxin and the IVIG. When I go for my treatment people are on DMARDS and IVIG. There are more darn health issues that are really complicated!!!! It is amazing that we all hang in there. You have a good attitude and I think you have a big caliber bullet that you put between your teeth when the going gets tough!!!!

Have you ever thought about asking for the patient advocate to come in and talk about pain control? Doesn't your PCP know that pain is what the patient says it is. Maybe they need to start doing pain assessments on you every 2 to four hours and asking you where the pain is etc and the number of the pain. The nurses will love that!!!! They will ask your PCP what kind of pain control he is going to use and he will be forced to face the issue.

He should also know that anyone with your diagnoses is going to have pain and that escalations are normal when in a flare and when a person has an infection they do go into a flare!!!! Golly, these docs and their preconceived notions. Makes you wonder if they missed class on the important days!!!Hang in there cause you can do it! Irish ;D
Title: Re: Hospital AGAIN and other updates....
Post by: wordnerd on August 31, 2008, 10:51:57 AM
So my docs have bumped my dose of Prednisone up to 80mg a day to start with to try and get me able to eat and reduce the neuro symptoms enough to go home.  I just started with that today, so I'll see how that goes.  As you know by now, I'm not a big fan of Prednisone as I tend to have really severe side effects from it really quickly.  But I'd be willing to put up with almost anything to get out of here as its already been 2.5 weeks!  Then when I do get home they plan to switch me to Rituxin, and IVIG might be a possibility also.

Apparently I'm not the only one who doesn't want to be stuck in the hospital over the holiday weekend because by yesterday afternoon the whole hospital is more empty than I've ever witnessed.  I, however, have been on a medical/surgical floor that also tends to have all the really "confused patients".  It's hard enough to get a good night's sleep in the hospital as it is without dementia patients as neighbors on either side of me screaming things at all hours.  So yesterday when I heard how empty the hospital was I asked if I could be moved to another floor that was quieter (and maybe even one of the newly remodeled ones  ;) ).  Late last night I got my wish!  I'm now in a beautiful new room that is nearly 3 times bigger than the one I've been in (the old one was so small they literally had to rearrange furniture to take my vitals).  It even has a flat screen TV!  And most importantly it's nice and quiet!  Yay!

Unfortunately though I didn't get much sleep last night.  I was waking up every few hours with horrible stomach pain and throwing up off and on  :(  My pain meds still aren't doing the job.  The pain management doctor on call increased my morphine a bit over the phone, but not enough. And with the long weekend I don't think my pain doc will be in.  And understandably there's only so much the on call doc will do not knowing me and over the phone.  Blah.   :'(

Also my O2 sat was down to 85% last night after several days of it maintaining in the 90s.  So I was back on oxygen again...  It was a good thing I switched floors which prompted it to be checked again otherwise we wouldn't have known since I don't ever feel short of breath with it.  Kinda concerning for when I do go home....

Seeker - Thanks for reminding me that I can be a positive influence just by sharing my experiences!  It's something I tend to forget or minimalism about myself.  Funny too because I'm a writer and an aspiring novelist and believe that the writen word can change the world :)

Pud and Lynn - Thanks for you kind words of encouragement as always!

Irish - That's a good idea about talking to a patient advocate.  And I don't understand why my doctors don't understand how painful all of this can be either!  I really feel like a lot of it, especially with the pancreatitis is age discrimination.  I hear that I'm "too young for such strong pain med" far too often.  I understand not wanting me to get even more tolerant to strong narcotics since I have a whole life with this disease ahead of me, but that doesn't make me too young to have such strong pain!  It makes me so angry and frustrated!  I think they must have missed class on many important days!  But I'm hanging in as per always :)

Thanks everyone for all of you kind and supportive replies!  And thanks to everyone who is just reading along!  Words can't explain how much it helps to know that all of you are rooting for me and that I'm not alone!

Title: Re: Hospital AGAIN and other updates....
Post by: ProudAuntieNWash on August 31, 2008, 01:04:52 PM
Hi Lauren,

I hope that the increase in Prednisone will help you. My oxygen drops in the 80's often as well. Rather scarey when that happens.


Title: Re: Hospital AGAIN and other updates....
Post by: pudmott on September 01, 2008, 04:11:47 AM
Hey Lauren,
Glad to hear to hear you got a better room. Its amazing what a decent environment cant do for ones spirit. I got my pred put up today too not as much as yours but im on 37.5mg now. Also got myself a three month journey on clindamycin.
Lets hope your pred gets you well enough to be home. You're right right when you say you're not too old for the big pain. I think Irish's idea of the patient advocate is a good one. This doc is obviously not using his clinical judegement and is severely neglecting his duty of care. I dont know about you guys but we have a group of people who only deal with people who have chronic pain and help them find the best best way to manage that. Who knows what will be around in years to come. The reality is that you have big pain now and it needs to be controlled or at the very least managed to a bareable level. There are things out there that can be done for you and your PCP needs to pull his head out of his pompous a** and do something. Anxiety doesn't always cause the pain. It quite often goes the other way andd when the pain goes so does the anxiety and regains the abilty to be able to further assist their journey to get well.

I hope the new week finds some answers for you honey. Will keep my fingers crossed that you get home.
Pud ;D
Title: Re: Hospital AGAIN and other updates....
Post by: Seeker on September 01, 2008, 12:02:46 PM
G,day Lauren, I hope your new digs get the old creative blood stirred up.  You must get a lot story lines by watching the daily drama of hospital life.  Some people in your situation would sink into the (why me) trap.  It's great to see you reach out to other people in the forum.  Keep the smile on your face and be full of happiness and grace.

Title: Re: Hospital AGAIN and other updates....
Post by: irish on September 01, 2008, 09:28:47 PM
Pud, You are doing 3 months of clindamycin did you say!!! Wow, I bet you will be doing the yogurt and probiotics big time. I have taken that one a lot over the years. I did come up with a positive c.diff stool one time. I told the doc that I had this infection but she didn't believe me. Did the test and there it was. I was not having the diarrhea but had horrible smelling stools(sorry folks). Turns out that it was an infection but didn't have the bad toxic reaction that causes all the big time trouble. Good luck to you. Irish ;D
Title: Re: Hospital AGAIN and other updates....
Post by: pudmott on September 02, 2008, 03:02:40 AM
Yes Irish three months of Clindamycin,
Thanks for the bad smell story. I already got that without antibiotics to queer the works. Im already on diflucan and yes am getting the yoghurt and probiotics in, however i wont hijack LAurens thread with my stuff read more in my Down again thread.

Hey Lauren how ya doin honey?

Title: Re: Hospital AGAIN and other updates....
Post by: Katybarstool on September 02, 2008, 12:21:54 PM
Just a thought, Pud, could the Clindamycin be heating you up?

Title: Re: Hospital AGAIN and other updates....
Post by: wordnerd on September 04, 2008, 11:48:02 AM
Things have NOT being going well since I wrote last!  I've been subject to one mistake after another!  Tuesday night the Clinical Partner who came in to do my evening vitals touched me ALL over with latex gloves before I noticed.  On my arm, face in my mouth to put in the thermometer!  And then when I realized and started panicking and trying to have her get me help quickly she just laughed at me like I was making a big deal for no reason and left me in my room by myself.  Then my nurse at the time came in and told me that she was busy giving report for the next shift and that she was busy with other patients and I needed to be patient and wait.  This is as I was starting to swell up and wheeze.  I was loosing my voice and coughing and had strider.  Not to mention I was having a panic attack and flashbacks to last October when I ended up in the ICU and just barely escaped intubation from being exposed to Latex!  So then my NURSE also left me alone in there and I got on the phone w/ my mom and my dad (who was out with my uncle the doctor) and they started calling and finally Rapid Response was called after 45 minutes!  But that time I was gasping for air, my blood pressure had dropped, and it's frightening to think what would have happened if I hadn't just started on 80mg of prednisone two days before that since waited 45 min to call rapid response to give me epinephrine, breathing treatments, and benadryl!  Worse yet what would have happened if I didn't realize I'd been exposed and/or had anaphalaxsis too quickly to demand the help I needed!

Then yesterday my nurse brought me a pain pill that had yellow dye in it.  I also get anaphalaxsis to yellow dye!  I also caught that in time but she yelled at me and acted like I had no right to be upset and anxious that she'd almost given me something I was allergic to!  And a mere half hour later it was time for my sustained released morphine pill and it was also a different color than normal and she told me that the pharacy didn't know if yellow dye was in it.  So I got online to try and look it up to find out and that's when I noticed the reason teh pill was the wrong color was because it was the wrong dose!!!  She was about to give me twice the dose of morphine as I was precribed and when I pointed this out to her she just made excuses and basically got mad at me for it!

The only good thing is my pain managment doc finally put me on a morphine pump because my pancreatitis pain has been sooooo out of control.  So I'm having so releif from taht at least.  However I continue to have O2 saturation problems.  Yestderday my O2 saturtaion was down in the low 80s for most of the day even WITH 3 liters of oxygen on!  And the same at night even though I had 3 liters of oxygen and CPAP on!  My docs are still trying to figure that one out but still are thinking its autonomic.... sigh

I also can barely eat still.  I keep throwing up tons of green bile a few times a day.  And all that I can eat that I do keep down in Boost drinks and water.

I still haven't seen the new rheumy.  I still have no idea when I'm going home.  I'm afraid to sleep here because I can't stop worrying about dying from being touched by latex.  Its now been over 3 weeks and nothing is really happening to get me better and out of here.  I'm SOOO frusterated I just want to cry and cry!  I basically feel like I'm being left here to rot.   :'(

There's so much more I could right at the moment but I just don't have the energy.    I wish I could be writing a nice happy post about how much better I am and stuff.... but things are just not going well at all.  Hopefully I'll still be seeing the new rheumy before the weekend or I'll be heading into week 4 with no real progressed being made lately!

Sending hugs and love to all of you!

Title: Re: Hospital AGAIN and other updates....
Post by: pudmott on September 04, 2008, 04:25:31 PM
OMG Lauren
What the heck are they doing to you over there? I am so glad you are on the ball. Even though it doesn't seem like it you must have a little guardian angel watching to make sure things dont get drastic. I am so sorry that things arent going well. I am glad tho that they have you on a pump and you are finaly getting some relief from the pain.
I Hope things start looking up for you and this rheumy dude gets his butt in to see you. I will keep my fingers crossed there are some answers coming your way and you get home where you can rest up and get well

sending hugs and warm wishes
Title: Re: Hospital AGAIN and other updates....
Post by: Seeker on September 05, 2008, 05:37:00 AM
Lauren I am shocked and out raged about what was happening with you.   I hope your mom and uncle have read the staff the riot act.  First thing I would demand to see the head nurse and make sure all your allergies is put down on the chart.  Then make sure the nurses and doctors have read your chart before the medicate or touch you.  There is no excuse for what happend to you or their attitude.  It's a good thing we don't know what hospital your at or I think you would have a good number of us beating down their door and telling them to get their act together.  Hang in their kid we are all on your side.

Title: Re: Hospital AGAIN and other updates....
Post by: pudmott on September 05, 2008, 07:32:00 AM
I'm with you seeker. at this point in time i'm kinda ashamed to be a nurse myself. That kind of attitude and behaviour is not only unprofessional but downright dangerous. i bet if it were their relative they wouldnt be so know off the cuff.

Title: Re: Hospital AGAIN and other updates....
Post by: JannaLee on September 05, 2008, 06:23:15 PM
I agree with Pud and Seek!

This is material for an undercover "60 Minutes" tv special! 

Heck, this is material for a blooming lawsuit!

Hugs to you little girl!

Title: Re: Hospital AGAIN and other updates....
Post by: kimbo on September 05, 2008, 07:18:10 PM
 YEAH , to what they said !!!

Try to be strong and persistant.   Hugs and prayers to you , Word.     kimbo
Title: Re: Hospital AGAIN and other updates....
Post by: irish on September 05, 2008, 10:02:57 PM
Lauren, Darn it---things just keep on happening don't they. Sounds like it is time for the Patient advocate. It is not right that you are getting the brunt of the staff's ugly disposition when it is them who are causing the problems. I can't imagine what the heck they are doing. Don't they read their orders, care plan, med book!!!!! Like pud I am ashamed to admit I am a nurse when I hear of nurses behaving like that. It is totally unprofessional and dangerous.

Time to get a big flag and attach it to your door. It should read "latex allergy-yellow dye allergy" in big print. If things get wild again and you don't know who to call can you dial "911" and get some action????

Hopefully they will be able to get your 02 sats under control. I wish they would get you on IVIG as soon as possible to rein in the neuro symptoms that are occuring. Do you still have your gall bladder??? Sounds like your pancreatitis or liver etc are kicking up a storm of autoimmune issues also. What a terrible thing for you to go through. Why don't you have your mom bring you an alarm clock that you can keep in bed with you. That way you can nap and set the alarm to ring in 1-2 hours. This way you may feel like you aren't losing control over your environment etc and you will at least get some sleep. Just a thought. I keep my alarm clock close to me much of the time so I can take a little nap occasionally and not be late making supper etc. Hugs and prayers to you and for you. Irisih ;D
Title: Re: Hospital AGAIN and other updates....
Post by: ProudAuntieNWash on September 06, 2008, 12:34:42 AM
HI Lauren,

I'm so sorry that you are having such a hard time! I understand about the 02 thing. I am in the same boat with that one. Can't keep my 02 in the right amounts right now nor my heart rate.

One time years ago, I had a spat with my Dr (not the one I have now) because he didn't do the meds right. And I knew it.

Keep standing up for yourself. SjW is all behind you!!!!!! And like someone said, if we knew the hospital we would all be there making sure you got the best care!!

My thoughts and prayers are with you, Laruen. And if you want a latex, dye and germ free hug ((( hug )))

Title: Fired my doctor.... (or almost did)
Post by: wordnerd on September 06, 2008, 11:14:53 AM
I wrote this first part last night before bed but fell asleep at the keys...  ::)
Going to try and keep this quick cause it's late and I'm exhausted....

My dad talked to my uncle yesterday (Thursday night now) about my PCP and how he treats me, but of course which my dad needing to be the "nice guy" all the time positioned the whole conversation like I'm the only one w/ the problem and who's upset.  When he called to tell me how I it went I was furious both at him and at myself for letting him get me so upset and make me out to be more of a "problem patient" than some of my doctors already think.

Then last night sometime.... maybe around 4am or so, I woke up completely confused and disoriented.  After a few minutes I realized where I was and that I had lost bladder and bowel control in my sleep.  I was also extremely sore everywhere.  So it looks like I had another seizure.  My neurologist agrees that it seems like the most likely explanation given all the neurological problems I've been having.

And now I'm picking up here this Saturday morning lol
So then my PCP comes in around 5pm yesterday (Friday evening) and dives into lecturing me and criticising me about EVERYTHING.  He told me that several of the rheumatologists he wanted to come see me won't for various reasons ranging from that they just left the practice of one of my old rheumys and feel it would be unprofessional of them to they spoke to this one awful rheumy I saw once who both my PCP and I think is a terrible doctor who thinks that all of my problems are psychosomatic so they don't want to see me.  And my PCP told me it was MY FAULT that he was having a hard time finding a rheumy to consult.  The only reason I'm not still seeing the rheumy I loved and who totally believes me and in all of my diagnosises (and happens to be the top rheumy in this part of country) is because he is bad about communicating and coordinating w/ my other doctors because he's so high profile and busy, so my PCP refused to work with him.

My PCP then went on to tell me that although he believes I do have Sjogren's and other medical problems that I also have MUNCHAUSEN SYNDRMOME because I have so many symptoms that have NO BASIS in reality!  I demanded to know which symptoms he was referring to.  And he basically refused to answer and then when pressed he said that I don't currently have Autoimmune Pancreatitis because my enzymes are not elevated anymore.  When I asked him why he knew better than the top Pancreatic specialist in the country who had diagnosed me and who totally feels that I have it and that after so many years of having it my enzymes wouldn't be elevated and that I have all the other hallmark signs of it (elevated IGG4 subtype, diffusely enlarged pancreas, constantly vomiting bile, unable to digest food, severe pain, and so on all of which improves on high doses of steroids) he told me that screamed at me that that was "BS".

He also told me that I'm not having an oxygen saturation problem even though its written down by my nurses and witnessed by other doctors.  In fact I had a repeat PFT on Thursday which strongly showed that I have decreased lung capacity that dramatically improves when retested after taking albuterol.  My pulmonary specialist was suprised to see how strikingly different my scores were before and after teh albuterol.  He was also supprised by how decreased my lung capacity is from last time I had a PFT done just 6-8 months ago.  My PCP also said that was BS and he didn't believe it.

He then went on to rant at me about how my insurance company was calling him wanting to know why I was still in the hospital.  (Yep today is day TWENTYFIVE!!!)  He told me that I had no reason to still need to be in the hospital and I "need to come to terms with that reality".  I was sooo sooo upset that he would say this when EVERYDAY I've been here I've been begging to know when I could go home and how much longer I had to stay and what has to happen before I can leave and ect!  And he STILL couldn't say when I would be well enough to go home be told me it was MY FAULT that he was having to deal with pressure from the insurance company!

By this time I was crying and crying hysterically (and I'm sure being on 80mg of prednisone (his doing) and having my periods wasn't helping).  I was begging and pleading for him to please leave and get out of my room but he wouldn't.  He said I had to hear this because it was the reality and I should be grateful to him for taking the time to tell me and be honest with me.  And that I was wrong to be upset and yelling at him (which I was at this point) because he didn't deserve to be treated with disrespect just because he was telling me the "truth" that I didn't like to hear.

Finally he left to yell at my nurses to get my a Xanax and while he was gone I called my mom and he told her over the phone (right in front of me) a bunch of the same garbage he told me.  And then he left for good.  My mom called my uncle and my uncle fired him.  

I'm ashamed to say that while he was screaming and ranting at me and accusing me of being a hypochondriac or a person with Munchausens I felt so trapped and out of control emotionally that I pulled out some of my hair and dug my nails into my arms hard enough that I have bruises all over them today.  I also had this little plastic tubing connector thingy on my side table that I used to scratch myself for a while until I finally got my Xanax and was able to calm down.  I haven't done anything like that to myself since I was a teenager.  And I feel like I really let myself down by caving into my compulsion to engage in self harm.

After my uncle fired my PCP he sent over a really nice hospitalist to come talk to me and who I think is probably going to take over managing my case at least until I get out of the hospital because my PCP isn't coming back.

EDIT: While I was typing this my uncle just came back in to let me know that he hasn't been able to find anyone to take over my case for the rest of this hospitalization between it being the weekend and the fact that so many doctors are already involved that I guess new ones don't want to have to deal with my case as complicated as it it.  The hospitalist who came to see me yesterday apparently "respectfully declined" my uncle's request to take over my case for the rest of my stay here.  My uncle said he didn't even know he was allowed to do that since he works for the hospital, but apparently is.  So unfortunately I'm stuck with my PCP until I get out of here and we can figure out something else.  It was a good talk with my uncle though.  And he said he was really sorry that all this was happening to me and that if he was allowed he would take over my case he would (against hospital policy though so he can't).  Which made me feel better at least.  He said he's going to try and get my meds and everything switched over to oral as much as possible and arrange for whatever else can't be (IV fluids if I still need it and oxygen and stuff like that) at home, so I can try and get the heck out of here.

Also I think its finally been arranged for the chief of Rheumatolgy here to come and see me on Monday.  So hopefully something useful will come of that....  

Today I think I still feel a little shell shocked over what happened last night.  This weird combination of anxiety, fear, guilt, sadness, and other things I haven't sorted out yet.

Besides that horrible incident, yesterday was actually a pretty ok day.  There's this volunteer who you might remember I mentioned from back when I was in the hospital in May who came and sat with me for two hours after my spinal tap when I was in such horrible pain from that.  Well she still volunteers here every Friday and she makes a point of coming by.  And yesterday she came and spent a few hours and we talked about our pets and I read her some of my poetry and it was just really nice.  I also had a volunteer who sings and play guitar come by as well as the Rabbis who I've gotten to know pretty well from being in this hospital so much over the last year.  We had a few really good talks about how I can try to cultivate a closer relationship with god in a way that fits with me.

Also today my mom is going to come visit for a large part of the day and is going to bring my dog to stay with my dad so he won't be home alone so long and the really nice volunteer got it okay'd for me to come down to the lobby while they make the puppy swap so I can see my dog for a little while and get in some much needed puppy therapy!  I'm really really looking forward to that!

The whole allergy thing continues to be a daily issue.  I have HUGE signs all over my door and in my room about my Latex and Yellow Dye allergies.  (The really funny and mostly sad/pathetic thing about the signs is that the ones the hospital put up themselves are merely black and white photocopies of the ones my dad made up last time I was here because the hospital didn't and still doesn't have a standard latex allergy sign.... so now I have more print outs of the colored versions up.  But I think it says a lot that the hospital isn't even serious enough about preventing latex allergy messups to have a standard easily recognizable sign for it).  The storage cupboards outside my room are not even supposed to be stocked with latex gloves but it happens all the time anyway because the patient rooms here are arranged into pods often the other patients have different nurses than me who for some strange reason REALLY put up a fight about just wearing non-latex gloves for everyone in my whole pod for my safety because most of the latex mistakes occur when people are rushed and going from room to room and grab the wrong gloves from next door or outside in my pod.  I don't think that is going to change or get better until the hospital gets serious about changing their policies on how to handle extreme allergies.

In the meantime I'm just having to be constantly vigilant as stressful as it is.  Just yesterday the Xanax I was brought after the thing with my doctor was the wrong brand of generic.... one that had yellow dye in it!  Fortunately I managed to see that they weren't white despite my eyes being all red and swollen and scrunched up from crying.  When I'm better enough I really feel like the latex thing is something that needs to be addressed on a national level with the FDA.  I really feel like they should just mandate the removal of all latex from medical settings.  Period.  But look out for me on 60 Minutes too!  ;)

Irish - I had my gall bladder out in 2005 when I was just 21 years old.  It was letting gall stones escape into my bile duct, full of 30+ stones that were still inside, infected, and completely damaged from chronic inflammation by the time I had to have emergency surgery to get it out.  I'm now convinced that my gall bladder was just another causality of my AI disease.  I developed the beginnings on AI Pancreatitis about 6 months later.  Which brings the organ roundup to gall bladder, liver, pancreas, whole GI tract, bladder, thyroid, nervous system/brain.  Oh yeah and my eyes and mouth!  My other organ involvement symptoms are so much more painful and noticeable I literally forget about the classic Sjogren's ones half the time!  :o  And that's a good idea about setting an alarm... might give that a try.

Pud, Seeker, Janna, Kimbo, and Denise and everyone reading along giving me your support.... You are all amazing and I consider all of you to be my guardian angels!  Knowing that I can always come here and vent and be understood and supported means more than you'll ever know!  And believe me... I've been more than temped to set you all loose on my hospital a few times :D

Despite how awful this latest hospital stay has been... this whole year.... or even the last 8 years or so have been... I know I'm going to be ok.  I have faith in myself and my ability to find a way to be okay with whatever life puts in front of me.  And though I never ever wanted to come by it this way... I am thankful for the perspective all of this has given me and for the wonderful people (like all of you) I never would have met otherwise.  Lately I've been saying a lot... "If my life is going to suck, I might was well enjoy it anyway."  Sjogren's has given me lots of "gifts", most of which I'd have rather returned unopened, but I am thankful that it has taught me that being angry or sad or cranky or bitter all the time about how crappy life is right now, doesn't make it suck any less.  It just makes me emotionally miserable but doesn't change anything.  Not that I don't have my bad moments cause I have PLENTY of them.  But I don't know.  I think I'm okay.

I'm not really sure where I'm going with this... and this has turned into quite the marathon post, so I'm going to stop here.

*sending lots of love and hugs*

Title: Re: Hospital AGAIN and other updates....
Post by: Katybarstool on September 06, 2008, 11:32:44 AM
Lauren, I don't know what to say that isn't going to sound inadequate, so I'll just say, I'm thinking about you and sendingpositive vibes.

God bless.

Title: Re: Hospital AGAIN and other updates....
Post by: wordnerd on September 06, 2008, 11:50:13 AM
Thanks Kathy!  It means a lot to n you are thinking of me!  (And please don't worry about saying to wrong thing or something inadequate!  Just knowing you care means the world to me, really! :) )

Title: Re: Hospital AGAIN and other updates....
Post by: Seeker on September 06, 2008, 12:42:13 PM
Lauren, your adventures and hard ships sure sound like something out of novel.  When this is all over you might want to write a Biography about what happend to you.  Some of the greatest authors in literature have said that the reason what their stories are so successful is,  they write what they know.  You certainly know this subject matter.  I don't know if you have considered getting a patient advocate or not?  It might not be a bad idea.  You need to have some one who is more objective on your side.  Here is a web address for patient advocates in your State.:

I hope you will be feeling better soon.  Just as a point of intrest to you, it is 4:00 am,  I am typing this from my hotel room in Yokosuka Japan.  I am on a business trip here.  I find that it still amazes me that the world is so small now days.  As the British would say keep a stiff upper lip.


Title: Re: Hospital AGAIN and other updates....
Post by: Katybarstool on September 06, 2008, 12:49:17 PM
Hi Seeker.  Is that 4 am Saturday or Sunday? It 8.50 pm Saturday evening here in the UK.

Enjoy your trip.

Title: Re: Hospital AGAIN and other updates....
Post by: Seeker on September 06, 2008, 01:25:23 PM
Sunday, we are across the international date line.

Title: Re: Hospital AGAIN and other updates....
Post by: wordnerd on September 06, 2008, 01:46:20 PM
Wow thanks Seeker!  That website is a great resource... I've been looking it over and will continue to do so as well as pass it over to my mom to look through.  I'll probably make some calls to some places I found there on Monday... or emails (did I mention I totally lost my voice?  ::) )

I have thought about writing a biography someday, but I don't really have any desire to do so now.  If I did I'd want it to be looking back on my experiences from a distance.  Everything is just too close right now.  I am however working on three novels!  And my first poem just got published which is pretty cool (even though it was only in my local writer's club anthology).

I am also going to be starting a blog about writing and life as a young adult with chronic illnesses... more on that soon... stay tuned :)
Title: Re: Hospital AGAIN and other updates....
Post by: Seeker on September 06, 2008, 03:10:57 PM
Lauren, Just for grins and giggles, make sure the hospital staff see you on that web site.  Let rumor work for you.  I am sure the additude around you will change.  You don't even need to mention why you are there.  Let them draw their own conclusions.  As Bugs Bunny would say Ain't I a stinker.

Title: Re: Hospital AGAIN and other updates....
Post by: pudmott on September 06, 2008, 04:58:10 PM
Wow LAuren,
another big day at the office. The universe is sure throwing some curve balls at you. I understand how upset you must have been that you did some damage but look at it as a speed bump. Also its not like you caved after just a little bit of stress. You had major stuff happening girlfriend. I think that PCP would drive anyone to want to do damage. Its done its over t happened. You aare aware and you know.

You sound like though you have come out of it and have arrived in a really good headspace. that's great you can get some perspective. The patient advocate site sounds good and i think Seeker is right on the money about letting the staff see it.

The blog is a great idea. i got onto one from someone else here and even though ive only put in one post its great to get things down.

Yu keep trouping on girl. Goodluck and keep us posted. I'm still thinkin of ya here in Aus and hoping you get home soon. Give that puppy some lovin from me too, wat sort is it?

Title: Re: Hospital AGAIN and other updates....
Post by: Tinker on September 06, 2008, 06:46:54 PM
Hi Lauren,

I'm so sorry you've had such a hard time.  I just started reading your thread and I can identify with some of the problems you've had. 

Your medical staff stinks!  I hope you can get a complete copy of your hospital record, doctor's orders, nurses' notes, etc.

I did this and wrote a GREAT letter to the president of the hospital, used my nursing knowledge to kickk some a ss.  !!  What fun it was to quote the doctor's orders and use it against them.

It was a terrible experience but writing the letter led to a  verbal apology to me, a written letter of apology to me, and the doctor had to go to medical review for his cursory diagnosis and negligent care of me.  YEAH!!!

I asked them "What is the hospital's pain management plan?"  Turns out they didn't have one!! but they do now.

You need a tape recorder.  This doctor was WAY OUT OF LINE ....yelling at you?  It makes me angry just thinking about it.
I guess they figured since you were young they could run over you.  I'm glad you stood up for yourself.

Once one of these idiots gets the idea you are a drug seeker or a mental case, you have a hard time shedding that impression.  Hang in there and I'm thinking of you.  Get well soon!  ♥♥♥

Try to stay as calm as possible and I'm praying that you feel better soon. 

Just because they can't figure out what's wrong doesn't mean it doesn't exist. 
Title: Re: Hospital AGAIN and other updates....
Post by: kimbo on September 06, 2008, 07:29:00 PM
OH Lauren,

That Tinker sounds a reveler charge, she could be an advocate for your patient care.

Good for you Tinker.

Prayers and hugs,  Word
Title: Re: Hospital AGAIN and other updates....
Post by: lynnmarie219 on September 06, 2008, 09:00:54 PM

This is all I can think to do for you right offer you a big hug....I'm speechless as to the treatment you have been receiving at the hospital. I'm so sorry for you.....and I'm hoping that you get to go home VERY soon!

( (
Title: Re: Hospital AGAIN and other updates....
Post by: Tinker on September 06, 2008, 09:17:13 PM
 :) :) :) :)

Kimbo!  You make me laugh!  Yeah, baby, I kicked b utt and HOW!  What fun it was to feel vindicated after being treated so shabbily.

I've learned that you have to act STUPID when asking for pain med.  You have to act like you know NOTHING about your body.  YOU have to let them think they figured it all out.

I'm an R.N. and I have never been so exasperated in my life at the treatment so many of us have rec'd.  So, we have to play their games, beg for their attention, and tell them they are angels .....etc. 

What a shame we have to play it so dumb to get an Tylenol ;).  And you can never show anger or impatience.  Forget it, you're blacklisted and shunned.

OK, ranting here, I know.  But, I'll bet you all have figured all this out already.

 Am I right?   ;) ;D >:(