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Thread: Need direction

  1. #1
    Join Date
    Nov 2004
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    Default Need direction

    I have been having issues for about year, slowly built up, really had no idea, many doctors said I was fine, and so I just beleived them, and moved on....then some docs started to become enlightened...took some blood work, and it ends up I have SLE....If you asked me this summer, I would say I was feeling poorly, but now that I look back this summer was pretty good....Sept onward has been real tough on just seems like things are worsening, not bettering...I know remission is the goal, but now it has been 3 months since an official diagnoses and treatments, and I am not really improved, if anything I feel worse physically...

    mainly it is the fatigue, such utter fatigue that there should be another word to describe. It is more than just tired. It is like I have been hit by truck...The second issue is pain, pain in the joints, but now the doctor says a lot of the pain I describe sounds like an overlapping secondary condition of fibromyagia, on top of the Lupus joint/muscle pain. I don't really care what you call it, I hurt, I feel literally bruised, but have none really, and my hands are the worst, my hands really bother me, but then again so does so many other places...Rashes...they come and go, you know the "mylar rash," it has improved from before diagnoses, back then it was the rash was like my number 1 complaint and it drove me batty, but since the Prednisone and Plaquenil I have much much improved skin, though sometimes it flares up, when I have been out in the sun for sure it does, or at night, after a long night sometimes I also have fevers, nothing crazy, like 100 or so, and not always, but like last week two days in a row, the fever and the rash seemed to come back a bit, but then like the next day it seemed a bit better, advil does help, and I also am on the Prednisone and Plaquenil which helps...but I still got that darn awful fatique and joint/muscle pain....and the fevers and rashes are not completely extinct either...

    anyways, I had to quit got that know it is bad, when you decide you got to quit work...I loved work.

    I see the rheumatologist, but I have also just delved into chiropractic care, and acupuncture, and phsyical aquatic therapy...I am desperate, I grasp at straws...I just want to start feeling better...

    I have found people have this need to ask how you feel, even the nurse on the phone from the doctor's, and they have this tone like they just want you to say you feel some improvement, and I even catch myself appeasing them....I know it is wrong, but I can tell they so want to hear the word improvement...and I even sometimes think maybe I can convince myself I am feeling better, and I will feel better, though it doesn't work, I think many positive thoughts, and the truth is, I am very sorry, but I don't feel improved, I surely don't feel like normal....
    Living like this is quite the challenge...

    I have decided to apply for a handicapped license plate. I just have so little energy and if I could just save some, by being able to park closer and such, perhaps I will not run out as quick...perhaps everyday things would be a little easier to do...

    I have no idea what support is out there...
    I mean financially this is devastating...
    Had to quit my job...
    I know there is SSDI, but I have heard nightmare stories about qualifying, and you got to wait 6 months anyways, and how do I get by til then? Is there any support services out there? Assistance? And I hear 6 months is rare, some people fight years....Then you get people who throw all this positive talk, like you will get better, yada yada, give it time, and I am all for positive talk, I really am trying it, but I know how I feel, and I know what I can and cannot do, and while I want nothing more but to be at work, I know it is not something I can do now. Then I meet these Super Lupus People, I say that with respect but frustration. There just seems to be that I have had the opportunity to meet all these people with Lupus who go about their lives like they are fine, and then there is me, and I am just like I don't know how you do it...It is beyond my capabilities and it may continue to be, and I think I need to face that reality as much as the idea of positive talk...

    What is out there? Is there anything?

    Oh, i am so overwhelmed....

  2. #2
    Join Date
    Nov 2001
    Victorville, California
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    Hi GSparrow:
    First, let me say that you are not alone. I know what you mean by the debilitating is almost as if you cannot move and to do so is so painful that it is not worth the effort to try to move. Walking to the kitchen to get a glass of water makes you feel like you've just ran a marathon and no amount of rest can alleviate the fatigue. You are virtually immobile. Most of us can identify with the fatigue that, as you say, should have its own name because "fatigue" does not describe what you are going through. Between the pain, the stiffness and the fatigue, I feel as if I am 90 yrs old!
    Lupus affects each of us diferently and so, there are some people with milder forms of lupus who are able to maintain some semblance of a "normal" lifestyle. Then, there are others who are virtually bedridden due to their lupus and cannot even feed themselves or take themselves to the restroom. This disease is heinous and runs the gamut on how it affects us!
    Like you, many of us have had to give up our jobs because we were just no longer able to perform. Some have been lucky enough to win their disability cases..most of us, however, were flat-out denied!!
    The truth is that, every day, we lupies are confronted with a range of issues, from emotional reactions, to the failure to understand by our families, to the loss of our jobs. Our physical and psychological states fluctuate on a daily basis...and that is what we can expect as the normalcy of our lives.
    You might want to see if there is a Lupus Foundation in your area. They can help you with information regarding help (financially and/or emotionally) and what you might be eligible for. Also, try the Lupus Foundation of America and the Americans With Disabilities.
    Just know that we are here to listen to you, to offer you support, understanding and information and, especially, to let you know that you are not alone.

    Peace and Blessings

  3. #3
    Join Date
    Jan 2004
    Pacific Northwest
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    GSparrow -

    Just wanted to say hi and that I am hoping the best for you. Many of us have been through what you are going through, and probably even most of those "Super Lupies" have, too. The most important thing is getting enough support - wherever you need to go to get it. It might sound simple and easy, but some families and friends have a really hard time relating and dealing on their own, so cannot give you any extra. That's where support groups, counselors, the Lupus Foundation of America can be really helpful.

    I also had to quit work and will need to make a complete career change when I return due to Lupus. It is a very real and difficult thing to deal with. Working helps us feel productive, and it is hard for me to tell people I do not work, then I feel I must explain why.....I'm sure you've been there, too.

    Anyhow, I'm thinking of you.


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