LOOKING BACK…..SLE, RAYNAUDSBarb Stanley
As I look back some 40 years, I know that is where it all began. I had given birth to 5 children within 6 years. After the birth of my fifth, I came down with a rare blood disorder. They told me I had become allergic to my husband’s blood through the placenta. I became a female hemophiliac in the test tube. I was under the care of an excellent hematologist from Long Island Jewish Hospital that kept me alive for 3 years and 8 months.
Let me regress for a moment. Three months after the birth of my fifth child, I was in severe pain and swelling in my legs. I was originally diagnosed with phlebitis. I was crawling on all fours. Having five babies it was nearly impossible to care for them. I went to the hospital and they began treating me with coumadin. I climbed the walls with the pain and had very high fevers. As it turned out, the diagnosis was incorrect. They were thinning my blood. Can you imagine thinning blood that was already hemorrhaging? I was bleeding into my kidneys. That’s when the GP (we used them for everything years ago) said he was calling in the hematologist. That’s when my ordeal first started. For three years and eight months I was in and out of hospitals. If I put my hand down too hard, I would bleed internally into the tissue. Swelling always accompanied the bleeding, thus causing the pain. Once my four year old, shut the refrigerator door and it hit me in the temple area of the head. I bled and swelled so badly, they had me in intensive care. My face and throat swelled. They put ice in rubber gloves and had them wrapped around my total face and throat area. I couldn’t talk. I literally had hundreds of transfusions. These bleedings continued for three plus years. Pain was excruciating. I was allergic to morphine and most pain meds that were strong enough to combat this pain. I ripped the bed sheets apart in order to deal with the pain. Physically, I looked like I was in an automobile accident. I was black and blue all over due to the constant hemorrhaging. What kept me alive, believe it or not was massive doses of prednisone. I had the moon face. Pred was experimental then, and I had to sign a waiver that they wouldn’t be responsible for my vision. If it weren’t for my family and very dear friends, I don’t know what I would have done with the children. I was bedridden. I had to be carried to the bathroom. I couldn’t walk. My hubby had to go to work to keep the mortgage paid and the food on the table. It was a living hell. Well, I will make this part of my past short..it went on and on. Neighbors even came in to pray over me. Would I make it???? I hid small pieces of paper stating who I wanted to help with my children ,if something happened to me. I knew my hubby couldn’t provide and take care of the children alone. Impossible! My blood disorder left as mysteriously as it came on. I was in elbow braces with both arms. The joints were badly damaged due to the constant bleeding. Big time damage. When I was sure all bleeding had finally stopped I had the left elbow operated on as it was in horrible pain. They fused it at a 45 degree angle as my right elbow became locked (due to the bracing) at 90 degrees. They tried to plan this so I could lift my children and drive. A short while after, I was diagnosed with Raynauds. Then, I decided to go to college. I had made it through this ordeal and decided I had to give something back to society in exchange for my life. It took me 5 years to get my BS and MA in teaching. That was a new beginning.
As the years progressed I had many bouts with leg and back problems. Lived at the chiropractor. All in all, not too bad. Loved raising my children ( I was told to never have anymore. We had wanted at least eight). Then about fourteen years ago my right elbow gave out. I had to have an elbow replacement. Finally, no pain. The past ten years were spent constantly in the orthopedics office. Many cortisone shots in various areas of my body. From my toes, ankles, balls of the feet, knees, hips etc.on, and on. Also many, pred-packs and at times, low dose prednisone. Still nothing for the pain as I can’t take any of them. My Orthopedic doc was stumped. The pain was migratory. He told me I was an enigma. So be it!
In December of ‘99 , I couldn’t walk, lie down or even sit. Hip pain was unreal. Knees were very bad. Couldn’t even get into the car to get to the doctors. He had to prescribe a pred pack, so the inflammation would abate. When I did see him, it took two of them to get me on the table ( I am not a very big person).My daughter who is an RN asked me to have the Doc do some blood work. He did a sed rate, ANA, RA, and Lyme test. RA was negative, Lyme negative, Sed highly elevated (75) and the ANA elevated (1:320). He sent me to the Rheumy. It was then in January of 2000, that I was diagnosed with Connective Tissue Disease-Lupus and Raynauds. I was started on Plaquenil and Pred. Once again, after three months, I became allergic to another med, Plaquenil. He changed the pred to Medrol and put me on Minocyline. I since found out he didn’t believe in the infectious theory He prescribed the mino as it can act as an anti-inflammatory. That is when I found an on-line support group. I was posting on the Lupus Foundation asking my questions when two gals suggested I try this support group . Did I luck out????? You bet! All the way from living through the hemorrhaging to finding caring folks. It has been a very rocky road, but I am so thankful for my hubby, children, family, and old and new friends I have met along the way. I will be celebrating 4 years on Minocin, March 15th. This was a GOOD day for me. I feel wonderful. I have found a supportive doctor. I did have IV’s of Clindamycin.. They gave a boost to my system. All my doctors (Ortho, GYN,Rheumy etc) concur that my "NEW" diagnosis of Lupus and CTD goes back to the birth of my fifth child. I guess we really will never know, and does it really matter? I’m not sure of that answer, BUT I am here to tell about it, and that sure makes me a happy warrior. I just want to say AP works. Be patient, ride the bumps and your future of good health is really just around the corner.
I am presently in remission, but I do take a maintenance dose of Minocin on M-W-F…100mg ....This therapy is not a cure, but oh, what a difference a day makes…