Surgery Update... (or look who's right back on morphine)

[irish]

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

[Nettie]

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". 

http://rarediseases.info.nih.gov/Resources.aspx?PageID=31

Nettie

[JannaLee]

Lauren,

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.
Janna

[wordnerd]

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! 

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

Janna - Zzzzzzzzzzzzzzzzz 

*hugs everybody*

<3 Lauren

[JannaLee]

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.
Janna

[genko_b]

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,

Genko

[Tamik]

Lauren,

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

[Skylar]

Okay, here is some dark chocolate fudge   Enjoy this reward for all the hard work you're doing with the PTs.

[Scottietottie]

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 

[Patze]

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!

Patze

[LenV]

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,
Billye

[Joe S.]

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.

[itssue]

Lauren,

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)))))))))))))))))))))))),

Sue

[kimbo]

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
Kimbo

[JannaLee]

((((LAUREN?))))

You still hangin' in?

Just one tiny little "z" is all I need.