Take 2 Steps Forward . . . 1 Step Back !

So, my intention with doing this blog was to get out all the confusing feelings and thoughts I was experienceing as well as providing my friends and family with details about my condition. To be honest one of the most taxing parts of being sick is having to repeat the details over and over again and heaven forbid you forget a detail, then people think you are hiding something or far worse, you didn't want them to know because they weren't as important. But what has happened is that my life has been so upsetting, depressing, busy and stressful that I just haven't been blogging. I just haven't had the desire to think about my life much less write about it. I'm not necessarily in a much better place but I am at a point where I think I need to put out some info and well, its been almost 2 months. My short and sweet status posts aren't enough info. I'm going to try to catch up now . . . if I can remember it all : ) I had Breakfast with Santa with my nieces and nephews. I really didn't have much money to buy Christmas presents but my nieces and nephews reminded me that they truly love me for me. I felt so special having breakfast with my 2 brothers, sister-in-law, Dad, BFF & Husband, my housemate and the kids. Breakfast was amazing! My sister-in-law, BFF & I were in the kitchen all cooking at the same time and there was no bumping into each other, making a mess or arguing. It was seemless. I credit my sister-in-law because she is walking peace - she brings a calm and sense of order to things. I just absolutely adore her. We ate and ate . . . I made my famous eggless french toast and a laundry list of breakfast goodies but the best part was the laughter and obvious love ! And my nieces and nephews like each other and like being around each other . . . it was family on steriods. My mom had to work in the morning so in the evening we had pizza and wings at her house ! More happy ! Family is good. I went to Alabama for Christmas. It was my first vacation from work in 11 years and my second time going home in 2 years. Last time was for a few days this time was an entire week ! And I loved every moment ! I met new family members that found us throught an unusual link and they were amazing ... looking forward to seeing them in May. Everywhere I went there was a fully cooked meal and someone happy to see you. I truly needed it and the weather was amazing. While there I went to the property my grandfather farmed - the place my mother picked cotton - the place my ancestors toiled - and it was an experience I'll never forget and feel so privileged my family worked so hard for me, my generations and all the Joneses that come after us. We are in a better place because of their sacrifices. I also spent the day in Montgomery with a professor from grad school . . . she showed me Confederate and Civil Rights Montgomery and I can't wait to go back . . . On Dec. 30th my mother had her Thyroid removed. I stayed in the hosptial room with her til they released her on Jan.1st. On Thursday, Jan 5th I took her for a follow-up appointment and discovered she had an infection in the incision area . . . they drained it with a needle in front of me and it was horrible. I couldn't imagine anything worse. On Jan 6th I thought that something was wrong but couldn't convince her to go to the ER. On Jan 9th, we went for a follow up appointment and the surgeon realized that my mom was allergic to some of the material used in surgery and he performed emergency surgery on my mom, in his office, in front of me. I pray to never have to see anything like that or have any experience like that as long as I live. I don't wish that on any human. No human should ever see a loved on operated on. Needless to say I moved in with my mom and didn't leave til Feb 1st or so. I still go daily to check her scar and put cocoa butter on her neck. My mom is allergic to adhesive so the tape over her neck devastated her skin. My mom is rebounding .. .she looks good and is really strong. I am glad she is o.k. It was a scary experience. No one wants to see their mother suffering or in pain. Well while I was taking care of my mom, I didn't take care of myself. So, you read all of that just to get to this . . . the health update. Rhupus is a syndrome. It devastates your body and it is unpredictable. It is painful. You don't know when or how it will attack you and the only way you know which disease is most aggressive is that one is clearly skeletal and one is clearly muscular. The fact that they attack you simultaneously means it hurts to walk or to sit, to lay on your side or your back . . . rhupus is a disease that you don't get used to or understand so you are helpless and clueless. I was doing well, but when I started taking care of my mother I did myself some harm. I pulled a few muscles and caused some stress on my organs because I didn't take my medicine on time for over a month. I was able to get things back under control but then I started feeling terrible. I didn't know what was wrong . . . it was a lot of pain. It turns out that all these months of chemo, that seem to have done nothing to me, was destroying my insides. My digestive system and my bowles are inflammed and damaged . . . this process has been pain I didn't know could happen. My liver was hurting. It was crazy. I was able to see a specialist who helped pinpoint the triggers and together with my rheumatologist removed some of my meds, modified others and took the chemo. Now, that helped but then the pain came back . . . a lot of intense pain from head to toe - flooded my body. My inflammation was so bad that I put ice on my joints - that's right, the woman with arthritis put ice on her joints. The ice felt good and didn't harm me because my body is in that much turmoil. I hurt so bad on Thursday that I left work and headed for the ER at Hershey Medical Center. I called my rheumatologist and let her know I was going in - she called me in the car and divered me back to her office. She moved her schedule around to make sure she could see me. She is concerned to say the least because all my levels are up . . . which levels? you might ask, to honest I don't know, why don't I know ? because it's like alphabet soup and I get confused. So instead of looking at the letters I focus on what the test tell the doctor. Like the one that says my body is inflamed. And my white blood cell count is up . . . but my blood pressure is down and my kidneys and liver look good. But my spine is painful to the touch, my shoulders are so bad I can't lift my head above to comb my hair and my knee is crunchy, my ankles are huge and black . . . its a rollercoaster. The doctor thinks my organs will heal but now my rhupus is going crazy. Its interesting how that happens. A month ago I just wanted my organs stable enough that I could live and not have to go live at Johns Hopkins, now I just want to be able to walk to the bathroom without crying. So, when I went on Thursday the doctor reevaluated my meds . . . I have a complex medicine regimine - so she decided, NO MORE CHEMO - its just too devastating and she doesn't want further damage. I have a new arthritis medicine, she halfed my lupus medicine, quadrupeled my steroid, added a calcium supplement, added a muscle relaxant, gave me a pain reliever, and added another med (which escapes me right now). So now I take 14 pills a day but am in a lot less pain. I have to report to my doctor on Monday morning and we'll go forward. I am relieved that there is no more chemo. I am dredding putting food in my mouth because it has to go through my digestive system. I am excited that my kidneys and liver are approaching normal size and function. And I'm excited that if I stay on target Johns Hopkins will just be for testing, evaluation and treatment recommendation. I am grateful that my doctor is so responsive and attentive. I am tried. I am sick and tired of being sick and tired. I am weak. I am exhausted. I am in pain. I am in a Season of Healing. I am in the process of becoming healthy. I am going to be o.k. It won't always be this way . . . trouble don't last always. I'm in forward motion. I am taking 2 steps forward and even if I have to take 1 step back I will keep moving . . . moving forward.