Re: Kind of long .. another day

[Guest guest]

, sorry couldn't help but laugh when I saw the list of problems and your dilemma at the doctor's office when you fill out that form. It still baffles me that they have the space to put all the information in, but when you hand it in they seem almost surprised that you put something in that space. It's almost like an "Oh"..... Then, the new doctor walks in and says what's the problem. You go into details only to realize he never read the listed problems. Why do they even bother????????

I'm sorry about your aunt. When I retain fluids I retain up to 20-25 in 48 hours. It's scary. Then, if you don't weight yourself on a regular basis you don't know if this is weight gain or fluid retention. When I start feeling "weird" around my mid-section I know it's fluids. I get kind of stiff.

I could go into "you know you can control...." and so on, but you know all that. It's more medication and that's another problem, especially if you can't take some of it. Wheel keeps turning. Please do not let yourself think that you cannot beat this! You can and you will!!!!

Mojo

Kind of long .. another day

Hiya ..Today I went to my pulmonary doctor who wants me to try a whole new regimen of nebulized drugs .. and wants me to start on injections every two weeks of something called Xolair.I am so sick to death of all this crap. You know .. if I only had a couple of diseases .. I think I could handle this a lot easier .. its trying to juggle all the meds and crap for everything I have that is driving me insane!I had to fill out a questionnaire today so I could begin treatment with Xolair for my asthma. I was supposed to list all "ailments, syndromes, and diseases". I started writing and ran out of room .. so I asked the nurse about it .. and she says .. just write down the main ones .. pfffffttttt ... how in the frick am I supposed to know how to classify which ones are more important than others??AsthmaDiabetes (insulin-dependent, insulin-resistant)Congestive Heart FailureCardiac HypertensionPulmonary HypertensionLupus FibromyalgiaRaynaud's syndromeHyperlipidemiaDiverticulitisDegenerative disk diseaseClinical DepressionOsteoarthritisMigrainesThe questionnaire gave me room to list four items. Now you tell me .. which four would you pick to list .. and which ones would you pick to ignore as "not a problem"?So .. sometime in the next couple of weeks .. after blood tests and stuff .. I should start a course of injections of Xolair. I don't know that much about it and haven't done a whole lot of research .. yet .Just figured I would write to let you know what I am up to .. or down to? Oh .. get this .. yesterday (Thursday) I got up and weighed in at 207 pounds ( I know .. that is a lot .. but it is better than the 227 I weighed last month).In the afternoon I went to the gastroenterologist and weighed in at 208 .. no biggie .. figured that pound was the shoes. This morning I get up and MY scale says 214 .. I get to the pulmonologist's this afternoon .. and weighed in at 216!!! I mean . .what the frick!! 8 pounds in 24 hours????? and the doctors wonder why I get so frustrated and so depressed about losing the weight that I know is bad for me .. and yet .. really don't have any control over!!Last Tuesday afternoon I get a phone call .. my aunt died. She too had lupus and died at home .. heart attack and renal failure. Get this .. she gained 78 pounds in 3 weeks from water weight because her heart and kidneys just couldn't function. She had been in the hospital but wanted to go home, so they let her.. she died at home, 12 hours later. She literally drowned in her own fluids.This is what I have in store for me .. and I fricking hate it!!! I don't want to do this anymore .. I am tired .. really tired.. I think if I had just lupus .. it would be not a big deal .. but I think my brain is as overloaded as my body and I am fixing to blow a fuse.sighs .. sorry .. just feeling a bit depressed .. and needed to whine I guess..guess I should be grateful I am still walking around .. ok .. off to do research on Xolair .. huggles .. and hope you all are doing ok .. love you .. "The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies