My Fascination with the Wolf

Long before my diagnosis of Lupus (Latin for wolf) I've had a fascination with the wolf. Their sad, tired, and wise eyes. Their lonely howl. They always seem to be so misunderstood. Only accepted and understood by their own kind.

Yet, they are beautiful, brave & strong. My story of lupus actually starts as a teenager. I can remember a time that I couldn't put any weight on my right foot without extreme pain. It looked fine. The Dr. took x-rays..no broken bones, no swelling. "Do you have a test tomorrow?" Asked the Dr. with a smile? My parents, God love 'em, never accused me of just wanting to miss school. But, surely they had to wonder. Over time there were Other episodes of unexplained pain that disappeared just as quickly as it had come. I had rashes that Drs. diagnosed as allergies. I also remember times when I would find myself in a classroom & never remember getting there, WEIRD FEELING!

  Life went pretty normal for awhile. I Married a wonderful man & had two great kids. I had my son by C-section because of placenta previa…I read now that that sometimes happens with women who have lupus. When my son was about 18 months old, I started having problems with my hands…arthritis they said. Then I started having severe pains in my upper right side. Dr. said, I think it's your gall bladder. I took the pills for the x-ray and had a reaction to them so the x-ray tech said..no more dye for you. The next reaction could be serious. My x-ray showed a functioning gall bladder with no stones. OK, so that leaves a nervous stomach. I had these attacks off & on for a year. I started a job at the hospital working afternoons on the weekend. My husband was home to watch our son. Every Sunday I would fix him a brunch with bacon, fried eggs, etc. Every Sunday I would go to work & get sick and have to go home. Well after 3 or 4 weekends of going home every Sunday…I lost my job. I thought, well if it is causing me so much stress that it is making me sick…Maybe I'm better off. Funny though….I didn't think it was causing me stress. I liked the job. About 2 weeks after that I ended up in the hospital. They didn't know what was wrong. It sounded like my gall bladder. But the last x-rays were fine & they couldn't risk a serious reaction to x-ray dye. (This was before ultrasound) So, they started an IV with antibiotics and inserted a nasal gastric tube to pump the poison from my stomach. They pumped for 3 days. Finally late one evening a surgeon came to tell me they were taking me in to surgery to do an exploratory. My white blood count was extremely high. They couldn't wait any longer. I was relieved. The pain was really beginning to wear me down. I remember the Dr. telling me that it was the most swollen gall bladder he had ever seen. He was afraid to touch it. He said it was Shiny like leather and he seemed amazed that I didn't have one stone. Well, Now I find that vasculitis, caused by lupus sometimes attacks the gall bladder, giving it a leather-like appearance. That was in 1980.

Again I was OK for awhile. I had felt sick for so long. I was sure it was because my gallbladder had been infected and was draining my energy. So, I thought now I was 'fixed'. My "arthritis" would act up every once in a while. But I wasn't worried about it, Aspirin helped with the pain. In 1982 I had a beautiful daughter by C-section. After she was born I just could never get enough sleep. That's normal for the mother of a newborn & a 4 year old, right?   I never seemed to get enough sleep. My house was becoming disaster area. All I had energy to do was to take care of the kids. Housework was not a priority. I really didn't have the energy for that. There were days I would just cry & say I can't do this anymore. Of course that was said alone, behind the closed door of the bathroom. I felt like a terrible Mom and an even worse wife. The kids were getting older & becoming more & more involved with activities. I found myself driving a lot. To games, to practices, to dance recitals. I actually enjoyed it because I got a chance to sit & rest. At home I felt the pressure to clean, vacuum, do the laundry, etc. . I wouldn't allow my kids to have friends over because the house embarrassed me. Anyway, the arthritis was ever present. I started taking prescription meds to help with the pain. The fatigue, he said was just the fact that I was a "hands on" Mother. That I felt Like I needed to do everything. HA! I just wanted to clear a path through the living room! {:o) I lost the use of my thumb. The diagnosis was peripheral neuropathy. (very common with lupus) I had good days & bad days. But never great days. But Dr after Dr could find nothing wrong except arthritis and the mysterious peripheral neuropathy.

In 1993 I had severe chest pains. I couldn't move. I couldn't breathe. I thought it might be a heart attack. The pain subsided, but the breathing just kept getting worse. I couldn't walk across the room without stopping to rest. I went to the Dr. He took the normal CBC, an EKG, & a chest x-ray. I went back to his office for the test results & he said, " I have good news! You're fine!" I started to cry. He looked at me in total disgust and said, "What? Do you want to be sick? You should be happy you are so healthy!" I went home swearing I would not go through that humiliation again. I wondered what would be written on my death certificate. I prayed every night that I would live to see my son graduate from high school. That was 2 years away. I didn't dare to ask for my daughter's graduation in the year 2000. I took 4 hour naps. I would cry when the alarm went off in the morning. It hurt so bad to get out of bed & I was just sooooo tired. I was no longer able to work, I couldn't breathe. I held on to the washer to do the laundry & sat on a stool to do the dishes. I truly thought I was dying. One day during a shower I felt a lump in my breast. I thought, this is it…this is why I can't breathe..I have cancer and my lungs are full! I made an appointment with a lady GYN. She examined me and scheduled a mammogram. After I got dressed, she came back into the room and said, "What can you tell me about your breathing?" I told her what the other Dr had told me. She said, "Well, obviuosly there is a problem! I'd like to try to help."

Well, again I started crying. This time tears of relief. The mammogram was negative. But I call it the lump that saved my life. Had it not been for the lump, I wouldn't have seen another Dr. I knew a Dr. could see & feel this.   I would not be thought of as a lazy, crazy, hypochondriac. My new Dr. took every test imaginable. She was becoming very frustrated. Not at me, but at herself. She once told me that she wouldn't give up on me…if I wouldn't give up on her. All that the tests showed was that a chamber of my heart was not getting enough oxygen, my blood/oxygen count was low. But no causes were found. I again had blood in my urine. But no apparent reason why. My Sed rate was elevated….. Inflammation somewhere…but where? One day as I was leaving her office, I asked her to write a prescription for my Feldene (anti inflammatory) since I didn't want to go to the other Dr.. She looked at me and said…"Do you have arthritis? ….Do you get rashes? ….Does your face ever get a blush on your cheeks & over your nose?" It was as if a light bulb went on in her head. "I'd like to draw some more blood." A few days later she called and asked me to come in for my test results. She was pretty sure it was lupus. She wanted to do more tests just to be sure. She started me right away on high doses of prednisone. Within 3 days I was breathing normally. She recommended I see a Rheumatologist. I like her, but I will always be grateful to Dr. Wilson. She never gave up on me.

Now I have good days & bad. Even a few great days.   I still have the arthritic & muscle symptoms pretty much all the time. There are days when I sleep more than I am awake. I have rashes all the time. Thank Goodness most of mine are out of sight on my upper back. I have some on my face & behind my ears but not too bad. I'm bothered with CNS (Central Nervous System) mostly in the form of forgetfulness and numb areas. I have had a couple episodes of complete confusion. Very Scary!!! Twice I was unable to write a check…I could not, for the life of me, figure out what to write where.   The last day I worked at our video store I was waiting on a lady. She brought up about 5 or 6 movies. I went to ring them up on the register & when I looked at the register it was completely foreign to me. I had no idea what keys to push. Sooooo, I just faked it. Heheheheee I just started pushing keys! The poor lady owed thousands of dollars! I can laugh at it now. But at the time I was totally embarrassed & scared to death. My husband was there & took over. I turned away and once again the tears started. And once again, I tried to not let anyone see. My husband assured me it was just because I was nervous & wasn't used to the register. Bless his heart……No, I couldn't even recognize the numbers. Anyway, thank goodness it has only happened those three times. These episodes were accompanied with a feeling that wasn't quite dizzy. The room didn't spin. Hard to describe…kinda like if I let go I would just melt away. Hehehehe I said it was hard to explain.

I get ocular migraines. I see zig-zagged patterns of light and like rivers of motion, flowing through my field of vision. No pain, and they only last about 20-25 minutes. The Dr. thinks it is probably vascular. (inflammation of the blood vessels.) So, even on good days, you never know what the lupus is doing. When or where it might pop up next. It can be very silent. This is why regular blood & urine workups are necessary to keep an eye on the kidney & liver. Many times symptoms from them appear too late. I'm on prednisone daily that is "upped" during a flare. Plaquenil (anti malarial) hydrochlorothyazide for excess fluid build up, Potassium to replace the potassium that the hydrochlorothyazide removes. Calcium for the osteoporosis, which was caused by the prednisone. Relafen for inflammation, ultram for pain, Hormone Replacement Therapy for the osteoporosis. And Pepsid AC to keep all these pills from burning a hole in my stomach. I don't mind at all taking these pills…. Not all that many years ago, people with lupus were expected to live 5 Maybe 10 years after diagnosis. Today the prognosis is much better. This is due to the medications and better lab tests to keep an eye on the disease's activity. Lots of studies have been made on more natural and less toxic treatments. Although they may make you feel better. They do not hinder disease activity & some can be harmful. Some times I get up in the morning feeling pretty good. I make plans for a movie & dinner with my husband only to have to cancel at the last minute.

I have the best family in the whole world! Many marriages, when one of the spouses have lupus, end in divorce.   I don't like to talk about lupus too much within my family. They love me & are very compassionate. I don't like to cause them concern. It's hard for them to understand, they would have to live it. And I don't want that!!! I have found a wonderful support group on the internet. Yes, the internet! It is a great comfort to be able to talk about this disease & how it affects our lives as well as the lives of our families. It has also helped me to open up more to my husband. I feel he should be educated about lupus. But, I don't want to scare him either.

Gosh, this has gotten much longer than I had intended. I was told it would be therapeutic to write my story.   I guess it has been. Life goes on….and what a wonderful life it is!

Rita