Tuesday, March 25, 2008

Welcome To My Blog

O.K., here we go. First, welcome to my Blog. This is my first attempt at documenting my "Life and Loves, living with Multiple Sclerosis." So much for privacy! First I want to say, as a nurse of many years, I have cared for and cared about many people who had M.S.. I always said, I would rather have most any disease, than have M.S. I have seen the devastation and the pain that this disease inflicts on the patient and their families. When I was diagnosed, the first thing out of the neurologists' mouth was, "Now there is no cure for M.S.", followed by, "There are treatments, but nothing will totally prevent the progression of M.S." That is not what you want to hear of course, but these are the facts. I have never said, "Why Me?" Why not me, Why anyone?
My Journey to the M.S. theme park, started before I ever knew I was in the park, much less on the ride. No pun intended. I was told at the age of thirty, that I had a stroke. I had CT scans and MRIs, saw a neurologist, and was told the stroke was related to my diabetes. Of course the diabetes was related to my obesity, and having two babies. Long story short, I was told, that I was too large, (over 300lbs), to have a proper MRI. I was never given the proper sequence of tests to diagnose M.S.. Again, in 1999, after having a focal, petimal seizure, I was scanned, and again told it was a type of stroke typical of diabetics. I remember undergoing an EEG, and other tests, but again, never the correct sequence for the correct diagnosis. I now know this is very typical for patients with M.S. In 2002, I underwent gastric bypass surgery, and lost over 200 lbs. I had excellent results, with the exception of being anemic. I felt great except for transient periods of weakness, which I blamed on the anemia. In late 2004, I began experiencing pain, in my left arm, side of the face and neck. It was excruciating. My husband took me to the emergency room in our home town. Of course I was worked up for cardiac problems, and admitted to the hospital. I felt really bad. All the cardiac tests were negative. My family doctor wanted to run some more tests. He ordered an MRI of my brain. Now I was small enough to get a good scan. That afternoon, he came into my room and asked me where my husband was. I told him he was at work. My Dad was there visiting with me. I remember the look on my doctors' face was unlike any I had seen before. At least when it concerned me. I remember asking him, "Whats wrong, do I have M.S., or something?" Very quietly, He said, "Yes, I believe you do." He had known me for a long time and knew that this was the last diagnosis I wanted to hear. "Well, that just stinks", I replied. He nodded and didn't say anything. My Dad sorta looked lost. He really didn't know much about the disease, but had lost my Mom to cancer earlier in the year, and the look on the doctors' face said a lot. I remember the images of current and former patients flashing through my mind. I always said, I didn't want to be a burden to my family. The next few weeks were spent with a barrage of tests; more MRIs, lumbar punctures, evoked potentials, ect. All were positive for a diagnosis of Multiple Sclerosis. Some home health solu-medrol infusions, and subsequent management of outrageously high glucose levels, I was feeling better. This was just in time to start the daily Betaseron injections, which my neurologist suggested. This treatment was disastrous for me, to say the least. I had fevers, chills, exaggerated flu symptoms, and "Major" depression. I stopped the injections after about one month. The depression didn't go away. As a matter a fact, it got worse. Much worse. To add to my depression, I began having significant visual disturbances. My next hospital stay came about 6 months after stopping the Betaseron. I was hospitalized to treat the depression, and get me started on an antidepressant. I was not a "happy camper" at this point. The M.S. theme park was definitely not an amusement park. Up to this point, I had continued to work my job as a home health nursing supervisor for two county programs. Let me just say, this is not a low stress job, and I could no longer drive due to optic neuritis, which had left me legally blind. All my doctors recommended that I quit work, and get disability. Well, as most of you know, and I feared, it's not easy to get disability. All I could think, was becoming financially unable to pay the bills, and loosing our home, before I could get on disability. I was wrong. My doctors and I submitted all the paperwork in August, I got my award letter in September, and began getting benefits after the 6 month waiting period. I still don't question the speed, I just thank God. Since then, I have tried taking Copaxone injections. I had terrible local site reactions, leaving softball sized whelps after each injection. These whelps, became hard and painful, and did not go away for several days. I quit the Copaxone after one month. I resolved to leave my prognosis to God, and my treatment; prayer and healthy living.
Well, that was then, this is now. I recently got out of the hospital. I had a major exacerbation of the M.S. symptoms. Complete left side numbness and extreme weakness. I again underwent MRIs, and tests. I also got 3 grams of solu-medrol. Again, sending my blood sugar into orbit. I was actually surprised to find the number of lesions in my brain was "too numerous to count", and the ones on my spinal cord were large and there were several new ones. I thought, "So much for healthy living". But I haven't given up on God. The doctor that saw me in the hospital, recommended I try Tysabri or Novantrone. He and my Doctor agreed, I should go to the M.S. clinic, where Tysabri can be given. So that is where I am now, awaiting an appointment to see the doctors and discuss my treatment.

I have always been one to set goals. Many times, I set them too high, setting myself up for failure. I have really had to work on this over the years. Since my first episode with sickness, in my twenties, I set a life goal. I said I wanted to live long enough to raise my girls, My two beautiful daughters. I did not want to leave them without a mother. My girls are grown now. I am constantly revising my goal, because, I don't think you can ever finish raising your kids. In 1998, I met my wonderful husband, my knight in shining armor. In 1999, I married him. I can't imagine loving someone more than I love him. After a couple of disappointing relationships in my life, I had found happiness. I set a new goal to live a long life with him. This goal is not measurable. There is not a time frame in which to complete it. It is for as long as I live. In 2001, I became a grandmother for the first time. I remember standing next to the bed watching him be born. Of all the babies I had seen birthed, for me this was like the first time. Knowing this was flesh of my flesh, was indescribable. Like all the good feelings in the world, happening all at one time. I set a new goal, to get myself healthy, so I could see him grow up. I proceeded to take control of my health, having Gastric bypass to loose the weight that had contributed to many of my health problems. I watched my baby girl graduate, get married, and start her adult life. In June of 2005 my oldest daughter gave birth again, my second grandson was born. Again, overwhelming joy is the only way to describe this event. I have set new goals, and renewed my vow to stay healthy on each occasion. I used to worry about being, "a burden" to my family. My oldest daughter visited me in the hospital a few years ago, and I said this to her. Her response was very simply, "Mother, don't you realize, we would rather have you as a burden, than not have you at all." This one statement was the most therapeutic treatment I received during this hospital stay. I also rekindled my relationship with the Lord during this time. He has reminded me on several occasions, that he is in control, and he runs the ship, not me. Sometimes, I am a slow learner, and trust has always been hard for me. I like to believe, I can do it all. I can do all things, through, Christ, my Savior. I may start new therapies and treatments, and go through trials, but Christ and prayer are one aspect of my treatment I will never change. I hope this site will be a type of therapy for me too. I don't want it to be seen as a complaint board,"come hear her tell how bad she feels". I do want to share the bad and the good. Maybe someone can relate to my experiences and we can all have a better understanding of ourselves and others.

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