Hospital AGAIN and other updates....

[JannaLee]

Sweetpea,

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!
Janna

[wordnerd]

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*

-Lauren

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!

[pudmott]

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.

Pud

[wordnerd]

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.

-Lauren

[irish]

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

[wordnerd]

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 

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*

-Lauren

[Seeker]

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 

[irish]

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

[wordnerd]

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!     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!

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.

Love,
Lauren

[Seeker]

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.


Seeker.

[pudmott]

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

Pud

[lynnmarie219]

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!

[irish]

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

[wordnerd]

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!

Love,
Lauren

[ProudAuntieNWash]

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.

Hugs

Denise