I just spoke to someone I know who has lupus and she told me I don't want a doc to diagnos me with lupus. She said it ruins everything. She said I won't be able to get insurance once I'm not eligible for medicaid and that once people find out you have lupus they don't want to hire you for jobs etc.
In my last post I vented about not knowing where to go and what to do. And how my illness is effecting my job and putting great stress on every part of my life. So needless to say, I'm more confused than ever!
What do I tell those I work with about why I'm so sick all of the time...most people aren't educated on this kind of thing muchless understanding of someone else's dispositions.
Am I just supposed to live out my life struggling with all of this and feeling like this all of the time? Am I supposed to feel miserable for the rest of my life? These problems I am having aren't something you "just deal with or get over"!! I CAN'T LIVE LIKE THIS!
I was reading over some labs that I had done when I was hospitalized with a HORRIBLE flare up...
I was admitted with vasculitis, skin rash, hypotension, and aveolar infiltrates. Possible asymmetric pulmonary edema. Vasculitis.
Labs said I had D-dimer elevation of 3.81, venous bicarbonate of 19, sinus tachycardia, urine protein 100(+2) H, urine RBC 5H, urine WBC 20H, hyalin casts 17H...
I'm not sure what some of this means....if anyone knows how to decode all of this it would be of great help.
The news I got today is very discouraging and consumingly confusing. I feel like I'm lost in the middle of the ocean with nothing to hold on to...I've never been that good of a swimmer.
Dear Shashy, I think racking up numerous visits to drs. and ER's can be just as hard on your health record as a Dx of some form of lupus. Hey, most people today are aware that lupus is treatable. Not to mention what absences from work do to your work record (I've been there & done that). Most important, if you have something that needs treated, I think you MUST continue to seek help, for YOUR sake.
Here's another thing to consider: what if you turned out to need only mild help? I had a huge "hit" in the 1980's, my worst hospitalization ever; it may have been vasculitis (I'll never know for sure at this point). But then I struggled for another FIFTEEN years. Now here's the joke: after Dx, I've only needed PLAQUENIL, which, as lupus goes, is a MILD med.
The sooner you can get answers, the better, is my personal opinion. I'm thinking of you & hoping you look at this issue from ALL sides. Sincerely, Vee
I am new to this thread but I have been feeling like a hypochondriat and lost for 4 years until my first positive ANA and possibility that I may have something like lupus. I have not have a visit yet with a rheumatologist to do the further testing but have had 6 of the 11 established criteria, so according to that I am a "positive". I told one person who had RA that I had had a +ANA and most-likely had lupus (per internist and history) and shesaid, oh, that is misdiagnosed all the time and dismissed me...so I learned very quickly that I wasn't sure if I was going to share it with just every body. But I do have one friend who has been dxd for 3 or 4 years and se just pushes through everything no matter how much pain or how severe her flare, so it is hard to talk to her about the emotional side of what I am going through, because I am not there yet...I am still grieveing. I don't WANT to have a chronic condition that affects my life. I want my life pre-four years ago! But I will tell you what my friend said. She is on Plaquenil and she said it did give her her life back, so I agree with VEE...it may take something so small. I am researching natural routes as well, like DHEA, sublingual B12 and D3 and there are foods that can decrease inflammation. But if you read my other posts, I was very frustrated today when just sweeping the kitchen and vacuuming the living room wore me out. THAT is something people just can't understand and that is what I am grieving. It is not the same person who worked out with weights and 45 minutes of cardio 4 days a week 4 years ago and used to play tennis and woke up each day with energy...
But maybe the answer to this for all of us is to accept life as life is (not roll over and die) but then we are freed up to fight and realize we can still have good quality of life. That is why I am pursuing this! All I knew was that after getting so sick 4 years ago and just never feeling the same and feeling guilty and hearing "your're sick again" from my loved ones, the chance that there might actually be a cause in my body made me not feel crazy.
If you haven't, do research on lupus. There are two very good books, my favorite so far being "The First Year of Lupus" by a lady named Nancy C. Hanger who has had it herself since the early 90s.
I reached out on this website, because even a book is sometimes not enough....we need the human touch.
I feel your confusion, your frustration, and your fear of what the future holds. I agree whole-heartedly with VEE, pursue a specialist in lupus and don't wait the 15 years because the fix may be as simple as hers (not to take away from any personal struggles she has had, because I do not know her complete story).
As for me, I am going to fight. Just like I have done with my severe migraines, I will do so with this possible dx of lupus.
Livestrong, take care and know that there is at least one person that is empathetic to your pain today.
dmarieok-
I appreciate your comment and sharing part of you with me. I don't get a whole lot of support from certain, most, people. I've decided not to let anyone get me down about having the dx. As you and Vee said, something so small can fix such a huge problem. I need that, so very badly. I can't seem to get the friggin referral I need!! Frustration through the roof!
I think I've found the root of my upper gastric problems...I had a HIDA scan the other day and the awesome radiology tech let me know that my gallbladder isn't emptying and functioning as it should. She wasn't sure if it would how enough for the insurance to ok the surgury. Not that I want to fo through all of that, I hear the recovery sucks...but I can't take the pain on top of everything else.
You're right, we need human contact to reach out to for things like this. I have done a ton of research, the more I do the more I'm sure that this is what I have. Having this kin of illness does make you greive. I never had much of that because I've had so many BAD health problems for the past 11 years, it's only recently that we've come to accept that I must have a chronic illness such as lupus. It's hard, and it's life...at least my life. There aren't many people out there who really understand and that makes life so much harder. i think that it makes me a better person though, I wouldn't want to change that. I just want to feel better. I have other posts, I meet I think 6 as well, as far as I know. Please, don't hesitate to write, I enjoy the company. Thank you again.
I was told I don't want the diagnosis 
I CAN'T LIVE LIKE THIS!
Linear Mode
