Mixed Connective Tissue Disease

Dani 2007 USA

I would like to share a paper my daughter has written for a class she is taking in college. This is rather long, but I hope you enjoy. I want to Thank Road Back For helping us find Dr S. Our first real hope for our daughter was finding the Road Back website. We will be grateful forever Gary Hildreth. Bundle Up! The morning was cold and dreary. The wind was howling and how could I forget the sleet. The second day of state for girls golf was one I would never forget. The previous days had been eighty degrees and my mindset of dress hadnt changed until I walked out the door. I called my mother and asked her to bring me more clothes because I wouldnt be able to bear the weather for five hours with what I had. She rushed to get to the course on time, but we had a problem, the round started a half hour ahead of the scheduled time. My mom wasnt able to make it and the players were not able to talk to the spectators after the round began. I was in trouble. On the fifteenth hole I couldnt hold my clubs and I could barely feel my hands or feet. By the end of the meet I was almost frozen. I couldnt feel anything from my ears down to my toes. This would be the start of a devastating nine months. The next few months the weather started to get colder and the snow started to fall. I noticed something was wrong with my fingers. As soon as they got cold, they would act as if they were a kaleidoscope, turning from white to blue and then to red and often times they would go numb. A month later, I decided enough was enough and I went and visited a doctor. I told him my symptoms and I then was diagnosed with Raynauds Disease. This is a disease that stops the blood circulation to the extremities of the body. I couldnt believe at the age of seventeen I was diagnosed with a disease, but the doctor reassured me that this would be no more than a nuisance. He also told me that if I kept warm I wouldnt have many episodes. I knew having this wouldnt bring me joy, but I thought I would be able to handle it. I couldnt of been more wrong. The weeks went on and I started to feel abnormal changes. I had no energy so I slept continuously. I wasnt able to bend my joints or lift my arms over my head. Soon I completely lost my appetite; I was averaging 500 calories a day, so the weight started to shed. I didnt know what was happening. All these changes were coming so quickly. I barely had time to react to the rapid alterations and I was scared. My mother also noticed my changes and brought me back to the doctor. He told me that I most likely had Rheumatoid Arthritis, but since he wasnt a Rheumatologist he couldnt accurately diagnose me. The thoughts raced through my mind. What is Rheumatoid Arthritis and how could a kid my age get it? What does arthritis have to do with my loss of appetite and my extensive naps? Would I ever be able to golf again? I just couldnt get over the fact that a young, active, healthy kid like me could get something as devastating as Rheumatoid Arthritis. The doctor visits started to increase, but my ability to move drastically decreased. I quickly became depressed and stopped being involved with my previous activities. I no longer had a will to do anything. I barely hung out with friends outside my house and golfing was completely out of the question. That was what really pushed me over the edge. I loved to wake up at the crack of dawn and golf until I was exhausted. I no longer could do this and it tore me apart. Golf was my relaxation and without it I had troubles; I didnt have my happy place without it. My days consisted mostly of sitting on the couch watching T.V. and taking long naps that didnt seem to give me any energy. This didnt help my depression; I started to isolate myself. Many days I started to cry because nothing was helping me and I had no idea what was going on. This disease was taking over my life. I couldnt stop thinking about those what ifs on that day at state. What if I bundled up and was able to keep warm? What if we didnt start a half hour early? Was that all it took for me to stay healthy? My parents and I decided the western medicine wasnt helping; I then relied on eastern medicine. I first went to a man that did acupressure and I thought it was working because I wasnt as tired and I became a little more active, but he soon left the area. I was back where I started and again this hurt my hopes of living a normal life. Soon I heard promising news, my aunt went to a woman that did acupuncture and she did miracles. Again, the treatment seemed to work; at one point I was able to put up my hair! Eventually I hit a plateau and then it went downhill. I didnt know what was going on. I tried so many different things; I changed my diet, I took a lot of vitamins, and I tried both sides of the spectrum in relation to medicine. My options started to dwindle and about a month later we headed to the next big thing, Minneapolis. There was a Rheumatologist that seemed promising in the Twin Cities. He diagnosed me with Mixed Connective Tissue Disease which is a combination of multiple joint and skin diseases and he wanted to treat me with a medicine my parents had studied called Methotrexate. The side effects were too daring and we did not want to try it. I now did not know where to turn and I had no choices left. After I went to the doctor in Minneapolis I completely lost hope. There was nothing left to do and nowhere to turn. I thought about the good old days when my life revolved around my golf game, but now it revolved around the couch in the living room. My problems then started to affect everyone around me. My family was continuously helping me do daily activities. My mom and sister helped me the most; they assisted with things from getting dressed to picking things up off the floor. I became so discouraged because I wasnt able to do anything by myself. I had troubles opening bottles, tying my shoes and sitting up in bed. My family helped me as much as they could, but I knew it was hard to constantly do everything for me. My mother was hurt the most by my condition; to this day she blames herself for this disease all because I didnt bundle up on that last day at state. I would lie awake at night and listen to my mom cry herself to sleep and I watched her break down into tears while talking to my grandma on the phone. My dad started to worry more about my mom than me because he knew I could bear through my disease. He saw I was living my life as much as I could and then he would look at my mother tearing herself apart. Not only was it hard for me, but it was more difficult to see the burden I had put on my mother. I didnt blame her for anything that happened that day; it was my fault, my mistakes. I have told my mom multiple times she was not the reason, but no matter what I say she will never change her mindset. She will always blame herself. When my mom and I talked about what was happening she cried more than I did and I didnt know how to deal with it. She was trying hard to be strong, but every time I asked her to tie my shoes her heart would break a little more. My dad, to this day, comes up to me and tells me I need to comfort my mother. Even after I have gotten better, she still gets emotional when we talk about my health. It was so hard to see the stress I created for others around me. Along with my mother my medical condition also hurt my siblings. They always had said I was the favored child because my dad encouraged me to golf (which isnt a cheap sport) and then with all my circumstance I was receiving even more attention. My brother and sister knew it wasnt my fault, but they also hurt because I was my parents main concern. They just wanted to be noticed. It was hard to receive the unwanted attention, but it was worse to see the recognition my siblings yearned for. My treatment soon helped this situation because I got better, but, of course, my family still worries about me. I never knew that while all this was happening my father was changing my life. He would wake up every morning at sunrise and go downstairs and sit on the computer for hours. I had no idea all that time was dedicated to me; I figured he was looking at the daily news. With all those hours sitting in front of that screen, he found a website that was dedicated to diseases such as Mixed Connective Tissue Disease called The Road Back. This website talked about a new treatment that had many success stories. My dad literally saved my life. He had found the answer we were looking for and I could never thank him enough. This time I had to travel to Iowa to see Dr. S. The treatment I would be put on had multiple success stories and I was hoping to be the next one. So my mom and I got in a car and drove for six hours and stayed in a small town called Ida Grove which was in the middle of nowhere. I didnt know what we were going to do for a week in a town where the hot spot was a gas station. As soon as we got there we meet with Dr. S. and right away I sensed this would be the last doctor. We sat in his office and talked about my symptoms and lifestyles. He was so caring and honest and he gave me hope that, like his other patients, I too would return to my five hour rounds of golf. I couldnt believe it was possible that in three months I could be tying my shoes and less than a year I could be back on the course. Emotions of joy raced through my mind; I already loved him. We stayed there for a week and twice a day I was injected with an IV (the injections helped my body to react quicker to the medicine). After the week of treatment was over, Dr. S. prescribed me pills, Minocycline, and he said it would take a couple of months before I noticed anything, but he assured me they would make me better. I didnt think the little town of Ida Grove would have such a big impact on my life. Two months went by and I didnt really notice any big changes; I was getting a little discouraged, but I gave it a little more time. The third month rolled around and I started to open bottles and sit up in bed by myself. Soon enough I was tying my shoes, getting dress, and walking up the stairs comfortably. Four months ago I didnt think I would ever be able to touch the top of my head and now I was putting up my hair! The Minocycline was changing my life for good. I couldnt believe the drastic changes I was making each day. Six months after my visit with Dr. S. I was able to pick up my clubs and take a full swing. I have to thank Dr. S. for changing my life. As of now I can almost say I am back to my normal self. I havent made the big step of playing eighteen holes, but Im getting there. I again can practice for hours on end without feeling exhausted. I cant exercise as intensely as I used to, but I know it will come around. Another problem I still have is getting up off the floor and crossing my knees. The fluids in my knees are a little inflamed so I have discomfort, but it is improving. Since my treatment with Dr. S. I have contacted him several times. He likes to do check ups on his patients and he loves to hear the improvements that occur. Dr. S. knows about my golf game and as soon as I could golf again I gave him a call and he was excited to hear my progress. As for my future and my disease I have to take Minocycline for the rest of my life, but it is worth it. During these nine months I visited a handful a doctors and this financially hurt my family. We do have health insurance, but that didnt help for a variety of my doctors. The biggest impacts were the doctor from Minneapolis and Ida Grove. In Minneapolis I was diagnosed with Mixed Connective Tissue Disease and for this to happen multiple blood test were taken. The most expensive was my visit to Ida Grove. My two IVs a day added up to be $1000 and I was there for five days. My insurance company wasnt able to cover this charge. Along with my IVs I also have to pay for my medication. This wasnt easy for my family because I was headed off to college and so was my brother. And to top it off we just had purchased a new home. I know it was difficult for my family with all the medical bills along with other issues, but my parents assured me they had it under control. After I was able to return to my normal life I started to realize what I actually had. I didnt think that my disease could have a good result, but it did. I looked at my family and I wouldnt be able to survive if I didnt have them pulling me through. They helped me during the roughest times of my life. I know it was as hard for them as it was for me, but they truly were the ones that got me out of bed in the morning. I also appreciate my friends because they too stuck by my side helping me get through the school day and staying in with me on those Friday nights to watch a movie. I sit back and look at my life and see how good I actually have it. I have people who care for me. Also, I have learned not to take anything for granted. I wasnt able to do much for nine months and as soon as I could open a bottle by myself, I was ecstatic. It is so simple, but to me it was one of greatest feats I had accomplished. After all the obstacles I have overcome, I came to the realization how good of a life I truly do have. I want to encourage the people that have this or any devastating medical condition to purge forward. I had many tough times and I honestly didnt think I would make it to my twenty first birthday. It was a continuous battle that I didnt think I could win. My condition included Scleroderma, which is life threatening and can lead to death, but I continued to live my days with a smile. With my family and friends by my side my condition was made a little bit easier. With my story, I hope to encourage other patients with any disease to live with hope because there is an answer somewhere and I found mine in Ida Grove.

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