Something has pushed me into a much worse place. Just to take a moment and includde some good news. Some new aparmtment Options have been found. I may get a 2 bedroom tho was told that that wasnt possible in 08.

2 weeks ago I had the fluids and tried to have the next 50K vit D2 dose. I had skipped the vit D2 for a week as body was doing worse and has been getting worse since the changes in parathyroid and recent changes in medication meaning 3 new ones.

As of this last vit D2 my body did a big shift. It now is holding fluids big time and not peeing much. Opposite of usual. Also since this began 2 weeks ago my weakness has gotten so much worse. I dont think I have been this week since just out of hospital in 08. Now as of this past week I cant even talke my hydrocodone normally. It makes the extreme dryness with much worse. I cant drink enough to compensate and as of lst 2 nites tho I drink tons all day I am waking about every 2 hours so so severely dry I have to get up and push fluids and and get some salt in me which for some reason helps.

I have Sjogrens but this goes far far beyond normal. I callled the Gastro doc I am referred to this past week only to discover a very differnt attidue. They had lost my file from 6 years ago. I wonder if it was found and this new nurse is projecting something. She wanted records implying that I could get in sooner than teh May 25 date I was given. When I called back and left a message that relevant ones could be sent just send the hosp a letter head she went all negative and suspicsiuos and said no. She wants a blanket release. Fat chance. I have been burned by that in a big way. And she is now satying that the records wont hurry the appointment up I will just have to go to ER. She is an idiot. With complex health I feel most of us know the ER can be a useless trip but I am scared enough and pretty trapped by my symptoms into needing help now. With my last 2 meds the mestinon and hydro now even a problem I have to do something. I had 2 bags of fluids Friday and I sure wouldnt know that know as severely dry and weak I am. It did tho give me just enough minor , temporary relief to go to my daughter and grandsons birthday party.

I have dissociated to some degree so I can go forward, to go to that party and act less scared and sick so I can put a face on for the kids, for my kids. I dont like being so much worse I go numb.

I talked to my daughter about going to ER today. I am way down to half the hydrocodone and barely any mestinon cause of the worse I get from any meds now. I cant wait more than a day or 2 and this doesnt put my daughter in a spot of missing work.

Annie59

I hope you go to the ER. There are a lot of weird things going on, and some of them you think you understand--but maybe some of your assumptions are wrong. How many of us have that story: I had this or that symptom, and I put it down to so-and-so, but it turned out it was really something else. You know how that goes.

I'm really concerned that you're drinking a lot but not peeing a lot--I don't know anything about these symptoms, but they sound very alarming to me. I really hope you go in.

Abby

Hi, Annie, did you go? Are you OK?

My support people are not working as well so didnt get there. It is still my priority. My oldest daughter is extremely burned out from adding the apartment issue to her plate. My youngest has pulled farther away. My home person, agency is not allowed to take me to ER. found that out Monday.

I called a friend who is rarely available due to work who helped talk me thru so find an answer. She said lets talk of getting from a to b not a to z. So I realized that as has occurred getting my IV fluids reduces my pain level. It was severe yesterday in the left eye area of face. So she said she could take me to get fluids.

She said she could also take me to tan Saturday as the reason my eye pain at least is returing is the vit D 50k had to be stopped because it made me worse last time. I didnt take it today tho got fluids cause I couldnt risk the same thing today meaning getting even dryer, as if I hadnt drank anything in the past day. This is so miserable. Have to get up when I wake about every 2 hours during the nite and push water and eat alittle salty food so I can get more sleep and not have the severe dry cause pain in eyes, nose and more.

I had my daughter call my eye specialist and strongly ask for the numbing drops they use in the office to get some temporary relief from the knife like pain in my eye that the dry was making worse.

My friend reminded me if something basic was done maybe I could think better as to what was the best next step. What a gift! I was so brain drained I called her mom at one point. Good grief.

Annie59