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 lolSo 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!
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
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*
-Lauren
