Friday, October 19, 2012
Today my hands are swollen and my skin is tight. The tips of my fingers itch, and I wish I could rip my nails off and scratch underneath. Other than that, I feel pretty good. Much of my spare time is spent researching. As difficult as it was to accept the lupus diagnosis, I have accepted it. If scleroderma is added to the list, I will have a new diagnosis of mixed connective tissue disease. That scares me. I have so many fears. My doctor was very upset and reluctant to diagnose me because I'm so young. It took her being 100% confident that I had lupus before she would make the diagnosis. We would always talk about it being a possibility during the appointments, and left it at that. Both diseases can be life threatening. My kidneys, lungs, heart, and other organs can be affected. Or, I can be treated with immunosuppressants and hopefully stop the body from attacking itself. I am currently taking an anti-malarial which we hope will reduce my number of flares and keep me in "remission" without having to deal with the issues associated with the immunosuppressants.
Saturday, October 6, 2012
Aubrey had her first college football experience Saturday. Keith decided Friday night that he would like Aubrey to have his second ticket to the Florida LSU game. That night, after celebrating my mother-in-laws birthday, Aubrey and I went shopping for Gator gear. We purchased a shirt, then went to Michael's so I could purchase supplies to make her hair bow. The next morning she woke up excited to go to the game. She ate breakfast, showered, then got ready for the big day. Once she was dressed, the other girls and I left to take Daisy for a walk. Keith and Aubrey passed us on their way out, and she was excited about her day with dad. I spoke to Keith as they arrived in Gainesville. They had stopped at chick-fil-a in Ocala for lunch, and they were near the stadium. Aubrey enjoyed the game after the second quarter and has decided she will start her college career at USF and finish a Gator!
Thursday, October 4, 2012
It's hard to believe my last post was on November 17,2010. Chloe was just five months old, and now she's a beautiful, active two-year old. She loves her big sister's and is a joy to be with. Bailey has developed so much over the past few years. Her speech is becoming more clear, she is beautiful, and she loves her new dance class(with typical peers)! Aubrey amazes me daily. She is a gorgeous little girl that absorbs everything she is taught. I am excited to see what her future will bring. It's hard to believe how lucky I am to have such an amazing husband and children. In my last post I discussed my illness and concerns. The doctors were leaning toward something autoimmune, but a diagnosis was difficult. We spent the last weekend in April with my cousin and her family at Legoland. We had a great time, but a few days later my arms were covered in a rash, and my face also had a rash across the bridge of my nose and on my cheeks. That day in the sun at Legoland caused these beautiful rashes. I called my rheumatologist and I was quickly seen. When she entered the exam room on May 3rd she inspected my rash and immediately said classic lupus. So my diagnosis was changed to systemic lupus erythematosus. That day I walked to my car in tears. I had known for months I would be diagnosed with lupus, but hearing the diagnosis being confirmed by my doctor made it real. I told my family and two friends, and other than a short post on Facebook during lupus awareness month, I've remained quiet. Sometimes I want to tell people, because I fear they are looking at me thinking I'm lazy (which I probably am), but I also don't want people to feel sorry for me. I don't feel sorry for myself. At least I don't feel sick all the time. Since being diagnosed five months ago I've only had a few flares. I've managed them with prednisone, and have done fairly well, until recently. The past two weeks have been a challenge. It started with a headache and has since moved to my right hand and elbow, my left foot, shoulders, and my back. Honestly, I think I could fall asleep at any time. The fatigue is horrible. I saw my hematologist this week and my iron and iron saturation levels are rapidly dropping. She is repeating labs in three months and may decide to start monthly infusions again. Then, I saw my rheumatologist again this week and my scleroderma antibodies were at 49 and normal range is 0-20. Since that appointment I have looked at my hands every five minutes to check for skin tightening. She will also repeat those labs in 3 months before ordering more tests and determining if a diagnosis should be made. Let's pray that was a fluke! Last night I started plaquenil with the hope of preventing future flares. When I saw my doctor this week, she asked me how I feel and said to be honest. So, I told her I feel horrible. I told her about my aches, pains, and fatigue, and then I said but... I can't let this stop me. I don't have time to feel sorry for myself and I can't stop doing what I do. If I stop pushing myself to continue moving forward I will sit at home and only get worse. She laughed and then told me that it amazes her how her really sick patients say the same thing, but her patients with minor problems go to her office whining and crying over minor issues. I don't consider myself to be in that really sick category. My hematologist is at the cancer center, and as depressing as you would think it is,the people in the chemo room are smiling, laughing, and enjoying life. Compared to those patients, my issues are minor, so who am I to sit and feel sorry for myself. So, I will end this by asking that you not comment if you are going to say you are so sorry, or that you feel bad for me. Please, don't feel sorry for me. I have a beautiful life.