Saturday, January 05, 2013
2012 was a doozy!
I am starting this year with hope.
I gained 20 pounds this past year, after developing arthritis in my right hip, getting a confirmation of Charcot Marie Tooth disease, finding out one of my best friends has stage 4 lung cancer , breaking up with my boy friend . Then helped raise $$$$ for my friend'S Cancer treatment , now she finally has insurance and she is doing well , is going through chemo every 3 weeks , is still teaching her spin classes. I am being treated for depression with St. John's Wort, had to increase my seizure medication because I started seizing again, had to have a sleep study last week since I might have a REM disorder ( I am exhausted after sleeping all night , and I am finding I wake up moving while I am dreaming ) , I had to have MRIs a couple of weeks ago of my head and neck after my doctor found my right arm and leg were suddenly weaker . I think it is the CMT and not a sudden injury or stroke. This week I started back at the gym and started walking more for exercise again. I am very sore and have been the last two days. Today I volunteered at a 5k race and then went to get organic produce at a organic farm with my friend Barbara , was wonderful. I am utilizing one of my team mates from one of my spark teams to help keep me accountable with my water , food and exercise daily.
I have to get this weight off again!
Thursday, September 22, 2011
Well I have tried to enter blogs for the last couple of months but every time I did , I wasn't allowed to. So I will make a synopsis. I went on Vacation this summer to New England in August for the first ever! Visited my friend Sue on Cape Cod and her family for a week, then visited my friend Lisa in RI for 3 days and then visited my friend Tony in CT for 4 days. I had a wonderful time, I flew on a plane for the first time in 9 years and for the first time since my spine injury almost 19 years ago I did not have to use a wheel chair when I flew in the airport. I carried my bags and I walked through the airports easily on my own steam, I didn't have seizures, I didn't have any dystonia the entire time I was gone It was HEAVEN! I fell in love with New England in the summer . It is so beautiful! I would love to go there again next summer and explore it more and visit more friends who live up there including my friend Roz! who lives in New Hampshire. When I got home from New England I was scheduled to have a procedure on my heart for an ablation for SVT ( supra ventricular tachycardia ) down in West Palm Beach county on Sept 8. I was excited and hopeful that this would 'fix' the issues with my heart. Well sadly that didn't happen. I had the procedure but they did not trigger me into the SVT, so the ablation was not performed. 2 days later I woke up about 5 am to go to the bathroom and stepped out of bed on my right leg and had so much pain in the front of my calf it felt like ' fish hooks ' were there but only in the morning and then it stopped. As the week went on each morning as I got out of bed that sensation grew worse and worse and my weight climbed higher and higher by Wednesday morning the 14th of September my weight had gone from 176 the week before to 186! The sensation in the front of my calf was intense sharp ' fish hook pain ' I made an appointment to see the new internal medicine doc at the practice where all my doctors are. He said he thought it was inflammation, I had been having chest pain since before the heart procedure so he wanted me to see the cardiologist to I made an appointment to see him the next day. The cardiologist wanted me to have a stress test to check out the chest pain, and have my leg ultra sound to check for a clot but he too thought it wasn't related to the procedure . So I couldn't get my leg ultrasound until the next day, so I made another trip on my bike mind you to the practice which is over 10 miles from my apartment ( I don't drive ) the next day for the ultra sound and had my leg checked out. The tech told me to go back to the cardiologist's office because he saw a clot! I spent the next 5 days in the hospital having anti coagulant therapy injections and oral medication because medicare doesn't cover medication at home ( the injections ) and I had to be in the hospital and wait and apply for the drug assistance program and get accepted and then have them deliver the medication to my doctor's office , they finally did that Wednesday ( yesterday ) so my friend picked me up and brought me home and picked up my medication on the way home.
I am now giving myself the injections at home and taking the pills as well. Home health will be here tomorrow and will draw blood levels PT ( prothrombin time to see if my clotting time is to 2 minutes yet ) if it is I can stop the injections and stay on the pills alone ) coumadin . if not I will continue on both until the PT is to 2 . I can not exercise until my PT is to 2.
I am so glad I got my Vacation in!
My weight is back down to 174 as of this morning. It was all swelling and fluid!
I continue to meet my challenges!
Wednesday, June 15, 2011
Ok a week ago I went to see my neurologist for a check up and for results of genetic testing that had been drawn more than a month ago. Well the test hadn't been processed because of a paperwork mess up but my doctor is certain I have familial Dystonia , a genetic disorder that has no cure and he started me on a drug trial of levadopa , the same medication that is given to Parkinson's patients. Dystonia is movement disorder and there are over 30 different kinds of dystonia. I am being tested for the DYT-1 gene that affects the trunk as well as the arms and legs .
Anyway I started on 1 pill a day for 3 days , then 2 pills a day for 3 days then 3 pills a day for 3 days. The medicine made me feel dizzy and unsteady so I couldn't ride my bike very well and it made me sweat a ton so I didn't go to the gym for almost a week. I went today and I couldn't believe how weak I felt in Pilates after just a week of not being there. I then did upper body weights but interesting enough I wasn't weak lifting the weights. I had planned on doing the noon spin class but I felt so dizzy I just rode my bike home. Hopefully tomorrow will be better.
I haven't had much of an appetite since starting the medication. I have been making myself eat. There isn't any nausea which is often a side effect of the drug, and there isn't a headache , just a very full head feeling and a dizzy head feeling.
I am hoping this drug helps with the symptoms , I am up several times a night on nights when I am having symptoms of the dystonia and when I am doing pilates my feet and toes will twist and pull , even when I play cards just holding the cards my hands will start twisting . I have had these symptoms since I was a child, I can't do a flutter kick when I swim my legs will jerk and spasm , the pain is unbearable some nights I can't get out of bed when the pain and twisting begins and some nights I am dragging my twisting legs around trying to get them to calm down so I can go back to sleep. My mother had the same symptoms, her father too. Not until now did we have a diagnosis .
I do have hope.
I went to the research and support site for Dystonia and found a lot of information and sent it to my friends and family. My friend Peccy signed up to run for the Dystonia Foundation at the Chicago Marathon ( I feel so loved and supported ) and that was just in this last week all of this has happened. I sent her the information and she signed up. This is my friend who went from 250- 138 pounds by diet and exercise and found she loves to run and is now a marathoner, we met at the gym and we support each other in our health and fitness goals and life everyday.
This morning I woke up and signed online and found out I was named Motivator of the Day here on Sparkpeople, again. It made me smile. It made me Blog today. I had been avoiding blogging, trying to put down in words all that goes on and trying to stay positive , trying to make clear all of this when my head feels so foggy . I am so grateful for so many things and so many people in my life that I have met on this journey!
When I was at the gym this morning and I was on the pullover machine , lifting 105 pounds , I guess I was daydreaming, I heard ' HEY PAM ! THAT ISN'T A REST STATION' It was my friend Mike, he was on the elliptical , he is 10 years older and has had a metamorphosis over the last few years himself, and I could hear my friend Ruth who has worked with him and trained him her words coming out of his mouth. He woke me up out of my daydream, and I continued working out. My thoughts were ' I LOVE MY FRIENDS' " I LOVE MY GYM" I LOVE MY LIFE" " I AM SO GLAD I AM HERE"
So big hugs to everyone who read this and forgive me for clumsy sentences!
Wednesday, February 16, 2011
Patience isn't my strong suit, and January and so far the month of February has been an exercise in patience for me. I have been sick on and off all year with a cold virus/vs allergies, tore my scar tissue in my left breast post op and had to back off my workouts. My mindset has been ok I can't wait until I am healed from surgery , which is about the end of March and it is HOT here so I can start working out hard again and start taking the weight off again! So goals have been to get sleep, dial down my intensity, get green veggies in because when it is winter here even in Florida I don't want to eat them and when I don't feel well with congestion for some reason I want to eat CRAP that only makes congestion worse, like bread and milk and chocolate. OH YEAH THAT WILL HELP A LOT! DUH. And to get some exercise in and to know what is enough exercise each day. Some days I couldn't even make myself get out of the house, my friend Peccy would call and ask how I was and I would say " I CAN'T GET OUT OF THE HOUSE, I AM TOO COLD' She would say ' WELL YOU AREN'T LAZY YOU MUST BE SICK'
That sentence would free me up because I felt like I was being lazy , even though I was sneezing and my ears hurt and I didn't feel well , that sentence from my friend would help me not hate myself. So today was warmer and I got to the gym, I was dizzy and my ears hurt, think that is allergies. Hope it keeps getting warmer and burns the pollen away . I can't wait to get back at kicking my own butt at the gym instead of learning about patience. LOL
Get An Email Alert Each Time PJOY17 Posts