Brace Yourself�

2002-09-27

Brace yourself, my one reader you, this is going to be a long entry. I�ve had this diary for over a year now and have not mentioned that I am a lupus patient. At least not that I can remember. I�m so proud of myself. Ninety percent of the time I forget myself. That�s the fact that I�m most proud of myself. . Ninety percent of the time I forget myself.

In 1986 I was diagnosed with Systemic Lupus Erthymatous. Long, scary-sounding name. Long, scary time to follow. Fortunately (?) for me I got the facial rash almost right away. Speeded diagnosis considerably. I hear some people have it for years before anyone figures out what it is.

I had joint pains at first. And high fevers. The rash appeared and I finally went to the doctor. He gave me an anti-inflammatory and a cream for the rash. The joint pain disappeared with the rash. I was scheduled to see the doctor again in two months. But I started having muscle pain. I would start the day fine, but by the end of the day I would be aching in ever muscle. In the morning I�d be OK, but at the end of the day I could barely walk. And stupid me, I had so little experience with doctors it never occurred to me to call and say �I�m in pain, can I come in now instead of in two months?� Those two months were honestly two of the worst, and most painful, months of my life.

When I finally saw the doctor, he gave me a minimal dose of corticosteroids, which immediately rid me of my muscle pain. The he told me I had kidney involvement. For the next year my progress was gradual, and all downhill. My husband left me. I was given more and more drugs, which I could less and less afford.

Finally, on Friday, November 13, 1987, I stayed home from work with a splitting headache. As the day wore on I noticed that my visual field was narrowing. With the last of my sight I dialed 911. �Twas not a fun time. I remember the fireman asking me, �How many fingers am I holding up?� I asked him where his hand was, trying to find his hand with mine; I was going to try to judge by touch. He never answered my question.

I remember the booted feet pounding on the floor of my third floor apartment. I remember being naked and not really caring that there were five or six men in my bedroom. They carted me off to the local hospital. I remember so little of the following afternoon. I remember pleading with the emergency room doctors to call my mom. �If you don�t call her by four, she�ll leave. � She had come down to work our shop while I was sick. I recited the number for the fifth or sixth time. Then I asked them to make the pain stop. Please, make it stop. It was such a long time between when I asked and when it stopped.

Finally my family showed up. I think that then I stopped trying to be strong. Mom�s here. Dad�s here. I don�t have to be strong for myself anymore. I started to have seizures shortly after they arrived. I remember hearing their voices, and then hearing the doctors push them out. It wasn�t until after that I knew why they made my family leave.

There are long spaces of dark after that. Long spaces where I remember very little. The little I do remember is full of needles. Needles, always needles. Did you know that they take blood from critical cases at three am so that the results will be ready for the doctors when they do rounds in the morning?

After a while they had IV�s in both my arms and started taking blood from the veins in my feet. You�re not supposed to take blood from an arm that has an IV. Try it sometime, just for a kick. And hope you don�t have as many nerve endings in your feet as I do.

Every time they had to stick me for an IV it was a trial. I weighed less than ninety pounds and my veins would collapse at the sight of a nurse with an IV needle. They would start with a normal sized IV needle and move down from there. The nurses eventually stopped trying and started bringing in the anesthesiologist on call. I can�t tell you how much of a relief that was. Anesthesiologists are experts at sticking IV�s. Never had one have to try more than once. It got to the point where I would ask them to bring in the anesthesiologist. If I woke up long enough to do or ask for anything, they knew it was important.

My grandmother came to see me on Thanksgiving. She brought me food. Turkey. Stuffing. Cranberry sauce. My favorite foods. I remember waking up long enough to see her and thank her for bringing dinner, then falling back into darkness filled with pain. One of the few memories I�m sure is my own because I can remember the shocked expression on her face when she walked into my room. Everything hurt. Being awake meant suffering on a grand scale. The only respite came at the end of a needle.

I get lost at this point. I don�t remember what I really remember and what people told me. I would swear that I remember my sister holding up my nephew to the window outside my room. But looking back, I don�t remember if I remember or I just remember them telling me what they did. For the record, it doesn�t matter. They were there.

I remember at one point a neurologist came in. I remember thinking that he was onlyinto himself.. I remember that he carried a �little black bag.� With a rubber mallet. With which him tapped on my knees. Smiling and flirting with the nurses the whole time. I remember thinking he was a stupid SOB. Me. Who was barely conscious most of the time.

I also remember the guy that did the first surgery on my arm. The tube that slipped in and out with my heartbeat. I woke during surgery, it hurt, and I said so. He told me to shut up. HE TOLD ME TO SHUT UP! When I had to go back a few weeks later to have more tubes put in other places I refused to let him do the surgery. The person doing the prep work at the hospital, she said he was the only surgeon available. I asked her where else could I have this procedure done. She found another surgeon.

My poor Mom. She came to the hospital every single day. There were times when I was not nice to her. I didn�t have the strength to interact. I said something bad like �I really don�t feel like company right now.� That may not sound that bad, but it was. I actually had the easy part. I wasn�t even conscious more than half of the time. The people that are there every day, that are awake and watching. They have the hard part.

I didn�t really appreciate the fact that she was there every day until it was almost time for me to be released. I was put in a room with another patient a week before I went home. Her husband came to see her once. Once. My mom came every day. My dad came every day. My sisters came many times. My friends came often. Lucky me to have so many people that cared.

They let me go home two days before Christmas. I wanted to go home more than anything I can remember. I still had to go back five days out of seven. Dialysis three times a week. Plasmapheresis twice a week. They had a tube in my arm to perform all of these blood changes. But they didn�t stitch it in tight enough. On Christmas day my father drove me back to the hospital. I was leaking blood around the tube insertion. My parents told me they could see the tube moving in and out of my arm with my heartbeat. I couldn�t bear to even look at it.

I was on dialysis for six months. If you want to be depressed, go to a dialysis unit. I can imagine few things more depressing. Thirty or so people sitting in reclining chairs attached to machines. For the first month I threw up every time they dialyzed me. Finally they moved me to another kind of machine and it stopped. I still couldn't�stand the needles and made them give me novocaine. Sorry, dialysis needles are two or three mm thick. They hurt. The nurses hated me. Especially those that were clumsy with the needles. They didn�t get to hide their clumsiness in my stoicism.

At home I cried a lot. I wanted my life back. I wanted to be normal, but I couldn�t. I needed the drugs. Twelve different drugs. Four times a day for some of them. I needed Dad to drive me to the dialysis unit. I needed Dad to drive me to plasmapheresis at the hospital. I can hardly tell you how excited I was when I was able to drive myself.

My Dad kept a chart of which medicines I was supposed to take when. And checked them off the list when they were taken. I had a seizure one afternoon and Dad took me to the local hospital. He dealt with all of the wonderful things that go along with a grand mal seizure; none of them pleasant. Have I told you how much my parents love me?

We did a couple of interviews with my nephrologist. I needed a transplant. My Mom volunteered. I can still recall the look on her face when she said it. After my folks left the room I told my doctor that I wouldn�t accept a donation from a family member. If they couldn�t find a cadaver donor, I�d stay on dialysis. I could risk any amount of money, but I couldn�t risk my family�s lives. My nephrologist agreed with the principle and thought we would be more likely to find a match elsewhere in any case.

Recovery was long in coming. I needed twelve blood transfusions before it was over. For all of you out there who have ever given blood, THANK YOU!!!! You, and people like you, saved my life. And the price I paid was the lowest in all my family. They had to watch when I was unconscious. They suffered while I was sleeping. They held me up when I couldn�t hold myself up. They supported me through all of the difficulties. There are no words in any language that can express my feelings. When my Mom had her bypass surgery I remember thinking �Sometimes the only thing that keeps you hanging on to life is the hand that�s holding yours.� My family held my hand and gave me reason enough to hang on to life.

At this point, I barely knew how to walk. I couldn�t run. My vocabulary, one of those things I�d always taken pride in, was gone. I spent a lot of time searching for the right word, certain that I knew it, but unable to remember what it was. My hands shook. I couldn�t write legibly; I could barely pick up a glass of water. But things improved. Day by day. Little by little.

Recovery was hard. I wanted to be myself. The me that had always been. That person was dead and gone. I was very reluctant to let go. I wanted my job, my self, my life back. But there was no way I could have it. I had to learn how to live all over again. Not an easy thing.

One of the happiest days of my life is the one where they told me I didn�t need to come back for dialysis any more. They�d moved me from three times a week to two. I thought it was because I�d finally stabilized. But, I�d peed, three times in one week! What a thing to be happy about, but I was. They�d done the blood tests. I�d regained enough kidney function to live without dialysis. I sat, stunned, in my La-Zee-Boy, looking at my doctor. I asked him three times. �You�re sure?� He was sure. A few weeks later I called Cal State Irvine. �Please take me off your transplant list.�

I did find a good doctor from all of this. One that I would actually pay to see, even if my insurance wouldn�t. I didn�t understand for the longest time when people would say to me, �Well, but my insurance won�t pay for this doctor.� I�d pay for this guy out of my own pocket. I did for years and would do it again. He showed up on a list of Orange County doctors that other doctors would see if they were in his specialty. My thought � �No duh, I�m still alive.� I don�t think he cares that much about me personally. I hope (and know) he doesn�t. He does care about doing the best job that he can. No doctor in this day and age, and certainly not in this area, can personally care that much about his patients. If he did, he would burn out in no time. Little good he would do to me that way. He does his best, and I thank him for it.

God, I can�t believe how hard it is for me to write this stuff. Fifteen years later. It affects my every day. If I don�t take my meds, I�d be lucky to last a week. I hate that weakness in myself. I always have to take that into account. I�ve always wanted to take a photo safari in Africa. What if I lost my drugs.? Can I get my drugs through customs? I have about twenty five percent of my kidney function. Why is it enough to go without dialysis, but not to go without drugs? What would I need to do to go without drugs? I�ve never been able to answer that question.

I have scars on both arms, on the top of my right arm and on the insides of both wrists. I�ve been asked more than once if I tried to commit suicide. I�d laugh if it weren�t so sad. I think of them as scars of honorable battle. I�ve had to fight for my life; I value it highly. Believe me. There were times I was ready to give up. Maybe I should have. The cost was so high. I think sometimes. YOUR LIFE COST A QUARTER OF A MILLION DOLLARS. You damn well better make it worth the money.

I did learn things. All of those clich� things. Do your best right now, because you may not get a chance to do it over. Make sure the impression you leave is the one you want to leave, because you may not get a chance to fix it. My philosophy is kind of �Eat, drink, and be merry for tomorrow you may die.� Every action you take now may be the last. Make sure they�re the actions you want to be remembered by. Make sure you live your life now, because it may be all you have.

And every time there�s a Friday the 13th in November, I celebrate. I call it 'Survival Day.' It's a very irregular holiday, but reason enough to celebrate for me.

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