
In 1995 I was diagnosed with Systemic Lupus. I wasn't shocked or even terribly scared because many members of my family had had Lupus and most were doing pretty well.
A year later, in 1996 we had moved to Chapel Hill, NC and I went to The University of North Carolina to see a nationally known Rheumatologist who specialized in Lupus. The day I got there they informed me that he was in the hospital passing kidneys stones (ouch - done that, been there) and I would be seeing another doctor. He ran tests, x-rays, read all the medical files I had sent, and then said, "You don't have Lupus."
I lit up! They had all been wrong ! I was waiting for him to whip out his magic pad and write me a prescription for an antibiotic or a magic pill that would make all of my problems go away - the pain, the swelling in all of my joints, the fatigue, the weird rashes, mouth sores, strange blood test results, and a litany of other things that made me feel, well...like total shit.
His magic pad never came out. I had Rheumatoid Arthritis.
The words hung out in the air like a balloon in a cartoon charactures mouth. Time stopped. When it restarted I began to cry because I visualized a woman who looked like me but was hobbling around with deformed joints, unable to get dressed, work, or pick up her daughter because of the joint damage.
To me, RA meant pain. Endless surgeries, feeling old and looking old by the time I was 40. And there is no cure. You have some good days, but more bad. And. No. Cure. And it wouldn't even kill me - which I know sounds very odd and selfish but the question became, was I strong enough to endure severe pain almost every day for the rest of my life with no end in site?
The doctor couldn't understand - he kept saying, "But you don't have Lupus - this is much better! Lupus can kill you." Well, that may have been true, but I was a 36 year old woman, almost finished with a Ph.D. in Psychology, I had a 5 month old baby. My relatives with Lupus complained of being tired, but they were working. But my family with RA - they couldn't take care of babies. They weren't working. Hell, some of them couldn't open jars, or use a pen. How was I going to take care of my daughter, finish school and become a shrink? The strongest drug they had for it was Methotrexate (which was a drug they used to give women with Breast Cancer) . I had been on it once a week for Lupus until I got pregnant. It didn't work, and made me terribly sick for a few days a week. What was worse is that it never did help with the pain or the fatigue.
This diagnosis I would not accept.
And I actually didn't have to accept that one for too long. I got a second opinion but things actually got worse. This lovely, gentle doctor listened, read everything, and said, "Karen you have Rupus - it is a combination of Lupus and Rheumatoid Arthritis."
Bonus. I was the over achiever. I had spent 6 years in graduate school, got married, had a baby, wrote and defended a dissertation. Now I had TWO auto-immune diseases. Wasn't one more than enough??
It has been over 15 years since I first suspected there was a problem. I have had some really bad days, I have had a lot of surgeries, a two year period that I spent almost as many days inpatient in a hospital in Denver as I did outpatient. I had excellent insurance (that we paid $2200 A MONTH for) that didn't cover the majority of our bills. I was unable to work for about years. My younger daughter, who is now 14, has never known me healthy.
Over the 15 years I have had Rupus I have taken lots of different medications, some worked for a while, others didn't work at all. I grew very depressed. I was in a lot of pain and that made me irritable. It was hard to play with my daughter, clean the house or walk the dogs. My husband was tired of coming home and finding me in the same position in the bed that he left me in when he went to work. And my body was doing strange things - I had a stroke, threw 2 DVT's, and a bleed out (they finally discovered I had a clotting disorder - I am a "lifer" on coumadin). I had a hip replacement at 41, three surgeries to rebuild my left foot, 2 surgeries on my wrist. I knew enough to get on an anti-depressant but that didn't really help. I was depressed because I was sick and in pain. So taking a pill to make me HAPPY about being sick and in pain and umemployed wasn't really going to help.
If you have stuck with this story to this point you are probably scratching your head thinking, "Oh my God woman, there are people younger than you were being told they have Cancer, who have been in car accidents and will never walk again, an you are bitching about ARTHRITIS? Stop whining and get a life. Lemons - lemonaide! UGH - I am off to another blog, this one sucks!"
And you are right -well, hopefully not about the part about the blog sucking - but that was my process. And sometimes, no matter how educated or bright or caring we are, when our bodies do things that we cannot control we feel a lot of different ways. Often people feel depressed, frustrated, embarrassed, humiliated, sorry for them selves...and often, although we don't want to admit it, we feel ANGRY.
I was angry that I got these stupid diseases that had changed my body so that the cells attacked it! I was angry that I was using my $80,000 education to stare at HBO all day long. I was angry that I wanted to help people with problems and now I was the problem and I couldn't even help myself. Everything was a challenge - on bad days my husband had to help me onto the commode. On good days, I could shower, get dressed, help my daughter get ready for school, pick up her room, throw a load of laundry in and then sleep until she came home from school. Mostly I was angry because I was stuck in that familiar place of "WHY ME?"
And I was depressed. I used to lie in bed at 2 am with everything hurting except my hair not sure if I was strong enough to continue living this way. I was depressed that I wasn't strong enough emotionally to deal with the pain and the fact that my life was going in a completely different direction than I had planned. Again...I know what you are thinking. No one can plan their life. Bad things happen to good people. Tomorrow is another day. I ran these platitudes through my head every day. I kept telling myself to GET.OVER.IT.
As the years passed I assumed everyone around me was as sick of this as I was. So when my friends would call and ask how I was doing I stopped being honest. I would say, "I'm doing fine," and then would change the subject.
One friend of mine was in AA (Alcoholics Anonymous). One day she called and I gave her the line I had given so many times and she laughed. "Karen, do you know what fine means in AA-speak? Fucked up Insecure Neurotic and Evasive."
BINGO.
I was FINE - exactly as she had described! For years I thought I had been lying, when in reality I had been telling on myself. And now I was busted!
If you have a chronic illness and are waiting for the part about how to deal with it...you need to wait a little longer. That comes next. Hey, setting the scene is the most important part - if I had just said, "Hey I have a few autoimmune diseases, and then I figured out somethings...but before I figured then out everything went to shit. Then it got worse. And now it looks like it is getting better" you would not have been able to relate. So now you know my journey into my disease...for those of you that can relate, hang on, I feel your pain. For those of you that have loved ones that have a chronic illness and you don't quite know what to say - I can help. Well, at least I can tell you what NOT to say! All this and more in the next part...or two!
Until then, think the good thoughts...the bad ones don't help and the good ones couldn't hurt!
Dr Karen
www.therapyforwomenindenver.com
Here is your teaser for Part 2: Surviving the Hurricane that is Chronic Illness
Chronic illness is isolating, emotionally and physically. And no matter how many friends you have you are doing it by yourself. And I am always amazed at how the people closest to you, that love you the most often say the stupidest things. And it isn't because they are stupid, or not caring, or mean...they don't know what to say. And they are scared - for you and for them.





