Hospital AGAIN and other updates....

[itssue]

Lauren,

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,

Sue

[wordnerd]

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! 

[Linda196]

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.

[Scottietottie]

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 

[wordnerd]

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....

[pudmott]

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

Pud

[lynnmarie219]

Hi Lauren,

I hope that you get some answers soon....by 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........

[wordnerd]

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

[pudmott]

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))))))))))))

Pud

[Victoria05202000]

Lauren,

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!
Vicky

www.sjogrensandme.blogspot.com

[wordnerd]

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!

Love,
Lauren

[pudmott]

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

Pud

[Dolly Dimples]

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.

[wordnerd]

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....

zzzzzZZZZZZZZzzzzzzz

[pudmott]

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

Pud