Lupus Support Group

Well, I finally got my medicaid, only took me 8 years of fighting beaurocrats to get it. My name is Cliff, by the way. I stil don't have a diagnosis, but did take the Lupus Foundation test, and answered yes to 10 out of 15 questions. Answered 'don't know' to a few, so my score could actually be higher.

I never developed discoid or butterfly rashes, but my eyes are extremely sensitive to light. Photophobia is what it's called. I do have raynauds as well. I've also been diagnosed with arthritis, degenerative disk disease, fibromyalgia, have seizures. The last one was a real winner. It happened right in the middle of an argument with my wife, and scared the hell out of both of us. Before that, My last seizure was in November. I didn't want my dad to see it. He worries enough about me. He tried to hide it, but he was in tears as my wife kept me from beating myself senseless during a seizure. I felt so bad for him. He loves me so much.

So now, here I am trying to get my new doctor to have me tested for systemic lupus. I haven't approached him yet with this, and already he suspects me of having Buerger's disease, which is often a misdiagnosis for sle. I'm dealing with a migraine at the moment, and my blood pressure was 166 over 99. Usually my blood pressure is 120 over 80. My wife is terrified, she's afraid she is going to lose me. I won't go down without a fight!

I'm trying to keep my stressors low, as stress seems to cause seizures with me. I don't know if my mom had lupus. She was murdered when I was about 4 or 5. I have three sisters who have autoimmune disease, a neice with ms, and a father with insulin dependent diabetes. I fit the lupus profile almost to a t, with the exception of being male. I didn't ask for this. No one asked me if I wanted lupus, and damn it, I'm mad!!!

Right now, I'm going through denial as well as wtf did I ever do to deserve this???!!! The answer is nothing. I've spent my life helping others, working our church soup kitchen every week for 3 years in a row, and voluntarily helping others get past many of their issues. And this,,lupus is my reward. Somehow, I feel cheated. The only reason I'm not cussing a blue streak right now is that I don't think it's allowed on this site.

So. Where do I go from here? What am I supposed to do, besides hide from the sun, and bright fluorescent lights? I love the feel of the sun, and now that is taken from me as well. I've lost my mother, my scolarship to Loyola Medical College (Due to disabilities), my career, a house, bank account, decent car, everything. Now my health. God, you and I gonna tango in the hereafter, that much I promise!

At this point, I am angry. I am depressed. I want to strike out, make someone else hurt. Make God pay for all of this, even though I know how rediculis it sounds. I know logically it's not someone's fault, but I feel like everybody else gets the American Dream. Everyone else gets the good jobs, decent house, new car, bank account, prosperity, health. Everyone but me. I'm so angry right now, and so hurt. I want to cry. I want to tear the walls apart. I want to curl up so tightly I disappear. I want answers! I want to know why, after I've done so much in life to help others. Why?

Hi Cliff.....I also have seizures but they are "simple complex seizures"....I haven't had one now since last July. I was on three different anti-seizure medications but finally tappered off Tegretol about 3 months ago. My seizures are from two brain aneurysms I have had and as a result of them being in the gray matter of the brain I have seizures and will the rest of my life but we can control them. As for the aneurysms they are a result of CNSV Lupus. I do see a Neurologist every 6 months and my Rheumatologist every 3 months now and I have Rituxan IV infusions every other week, I believe they are really helping me with the Lupus as I don't have as much migraines or fogginess or loss of concentration or comprehension....so as a maintenance I do the Rituxan, would be afraid to go off this medication as I am afraid of having another aneurysm...they were not fun. Since I have had those I have made peace with my illness...it took me a long time to do that but I think God spared me for a reason...as I should have died the first time I had the anuerysm....the doctors were stunned and then a second one.....whewwwww. I am a very positive up beat person and I will not let this illness beat me.....I used to cry why me but why not....their are so many children in this world that suffer and for me I believe that I have this illness to help support others with this chronic illness and because I am a strong person and will never give in to this disease....does that make sense???? I know that one day you might feel the same way.....just don't get too discouraged....were all here for each other and whenever you need to vent....come on this site. Take care.

Eva

I can feel your frustration. There is absolutely no answer to the why question. It's an energy sucker and lord knows we all need as much energy as we can get. Life happens, whether we do something good or do something bad, life it just happens. We can't do something good thinking ah, this will protect me from something else, we just do good things because we want to. The two items are not connected doing good and getting sick. Anyone can do something good. Anyone can get sick. And sometimes they are the same people. When I got diagnosed, my Dad asked me if I were a saint. Now, those of who have gotten to know me via this site might be laughing by now, because, um, really, no. But it's just that he sees me as someone who does good things. I'm a social worker, I've always done volunteer work, all over the world, even in war zones, and yet, here I am, sick. But you know what, I'm not a saint. I'm not an angel. I'm just a Lupie like each of us. Just equal, the same and trying to make the most of whatever I've got, and whatever I've got left.