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I was subscribed to this list four years ago and was not dealing well with my situation so I dropped out of this list. But I have met with a group of TM people from the Maryland, D.C. area and I did attend the Johns Hopkins Symposium weekend when I could since I live so close. My story: The night of February 7, 2002 – the night from Hell – I was 55 years old in great health. Never had flu shot and never had the flu. I awoke in the middle of the night with back pain. Not that unusual… so I got up to get a motrin…. at that moment, simultaneously, a very weird tingling went down both sides of my legs. So began the night from Hell…. Within hours I was completely paralyzed from the waist down. Because of the lesions they found on my brain it took a week to come up with TM. Still one doctor to this day insists I have MS. I will spare you the awful details of my five weeks in the rehab hospital. If I have learned one thing it is: I must be my own advocate!!!!!!!! I will never again put up with a doctor who is not truly interested in ME and my problems. At the time we were with an HMO – Kaiser – and since they allowed me to go to Johns Hopkins for a second opinion….. Dr. Carlos Pardo… confirmed the TM diagnosis. My daughter came home for three months on the “Family Emergency Act” and with rehab, etc,…. within three months I was using a walker (with great trepidation) but most important I was now (more or less) continent and able to control my bowel functions. I am not even going to go there with all of you….. unless you’ve been there who could truly understand the humiliation… and most of you have been there! So, I am back to work part-time, I use a walker and have hand-controls on my car. My family & friends absolutely refuse to leave me home so I have been to Italy, Costa Rica, Calif. …… terrified at times, exhausted but…. did it… I applied and received disability from Social Security. My husband is now going to retire for good! He found out a year late that he had prostate cancer. But thankfully, after surgery at Johns Hopkins, when a number of doctors “wrote him off”, he is cancer free. I went on Medicare in February. So… am in the process of finding all new doctors. I went to a highly recommended neurologist. All new tests were taken… He told me because of the lesions on my brain there was no doubt in his mind that I have MS and that I should get on MS medication immediately before I have another severe attack. I was numb…. I tried to joke around and told him since I was a born Irish Catholic who grew up in New York the lesions were probably from all the beer I grew up on! Not funny says he, get on the medication soon! I said I would need a second opinion… (He was not enamored by the Johns Hopkins group at all – too intellectual). So…. I went to another highly recommended Neurologist in the area. His diagnosis: Transverse Myelitis. He agreed that I was a very difficult case to diagnose most especially due to the lesions on the brain. Now there were even more lesions. But he was wonderful. So very kind and supportive. We are now trying new meds for pain.. Cymbalta, originally used for depression was found in many to combat severe pain. Did not work for me… So… next is probably Lyrica. I am on 2400 mgs. of Neurontin a day. Was on baclofen but did not seem to help so I stopped it. Was on Paxil for approx. one year then off for two but then went thru a terrible time with aging parents and my husband’s cancer so went back on it for another year. I’ve just gone off it again… It definitely worked for me when I needed and if need be I will take it again. I also realized that I need more contact with TM people. I need your support and your expertise. I have been subscribed to the e-mails for awhile now and I would very much like to come back and share with you my fears, joys and experiences of living with TM for over four years.
Boring Personal stuff… read only if interested J In 1970 I married my high school “sweetheart”, we have four great kids. We are a Marine Corps Family (Semper Fi) and we moved four kids and a golden retriever 13 times in 20 years. My husband was sent to the Pentagon and our family finally settled into a very nice community in Northern Virginia. Mac retired from the Pentagon and became an 8th grade Algebra teacher. I went to work in a special needs school, teaching computer tech stuff to fantastic kids who couldn’t speak English but were great with a computers. It was 2002, two of our kids had graduated from college one would graduate in May and so we had only one kid to go!!! . I decided it was time now for ME. Tennis was my sport and I was able to retire from my full time job and come back part-time … The night of the 7th I found out I had made the Women’s tennis team and had a great tennis partner. In an instant my life was changed forever. I know you understand that…. But I have a deep, deep faith in a loving God and friends and family that truly care. Yes, over the years I have had many a pity party for myself…. and damn it, I deserve those pity parties… But they don’t last for long before I realize I need to count my blessings….
Sincerely, Trudy
Worrying does not empty tomorrow of its troubles; It empties today of its strengths.
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