PJOY17   139,774
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PJOY17's Recent Blog Entries

Happy New YEAR!

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!


The never ending challenges continue

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!

  Member Comments About This Blog Post:

PJOY17 9/25/2011 8:58PM

    Thank you!

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DBECKUM 9/25/2011 7:53PM

    Wow it sounds like you have been going through a lot. I will definitely keep you in my thoughts and prayers! It is a good thing you were able to go on vacation before all of those procedures. I have recently taken an interest in the New England area and would like to vacation there in the next couple of years. Well keep your head up and hang in there buddy. emoticon

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Would you believe one more diagnosis?

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!

  Member Comments About This Blog Post:

ELAOPET 6/16/2011 12:00AM

Thank you for sharing this, you are worth of admiration for pushing the healthy way even when encountered with such hardships. You don't lose heart and that's all that matters.

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JIBBIE49 6/15/2011 10:19PM

    How wonderful that your friend got down to a healthy weight of 138# after being up at 250#. That is fantastic. I think all of us can be athletes if we just find our real love.

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ADMIST5711 6/15/2011 7:05PM

    Hi Pam, I happened to bump into your log. First let me say I am sorry to hear of your diagnosis and the obstacles it may present. Second I just want to say Congratulations on ALL that you have accomplished and worked so hard for. I can see why you have been awarded Motivator of the Day for the second time. What timing! I am sure that helped you over this last weeks worth of stress due to your diagnosis.

I am happy to have had to opportunity to meet you and read your story. From what I have read I am sure you will find the strength to deal with this medical condition and rise above it. emoticon emoticon on your Motivator of the Day! emoticon Just keep emoticon those goals. You've done an amazing job!!!

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MUCH LATER :) For Karmen

Tuesday, April 05, 2011

April 5 already and I am still dealing with allergies on a daily basis! Had to break down and go get allergy medicine a few weeks ago because I couldn't sleep or do much of anything , I felt like I was drowning with the post nasal drip running down my throat. I wish I could say more weight has come off but I can't say that. I am fluctuating between 181 and 186 pounds depending on how much sodium and how much carbs I eat. I saw my plastic surgeon last week and I was complaining about the pain in my scar tissue in what I call my anchors ( the fat pads on the side of breasts) under my arms that he couldn't take out because that is considered a different lift, they are big and heavy and pull on my breasts when I am exercising and working out and limit what I feel like I can do. He said to work on my weight reduction and see if I can take off another 30 pounds in the next 6 months and see if these anchors disappear in that time and pounds. His nurse took pictures of my new breasts and the anchors , she kept telling me that my breasts look beautiful and how well the scaring looks .
Yesterday I did my first Zumba class since destroying my knee in December 2009 and am pleasantly surprised how little my knee or the rest of me is sore today. This morning I plan on going to the gym for body sculpt and elliptical. I have been having a lot of trouble with my IT band on my right leg because it over compensates for the left leg since that is the knee that is bone on bone , for the last two weeks I have been laying off the spinning because two weeks ago I could barely walk with the IT band being so tight and painful from spinning too much and started rolling out the IT bands with the foam roller at the gym. That is pain full at first but later I can walk and move without pain . So it is worth it!
So I have started changing up my workouts trying different things and hoping I can get more weight off in the next 6 months like I usually do in the heat and wet season here in Florida, I just keep plugging away at it. THAT IS WHAT I DO!

  Member Comments About This Blog Post:

ANDIMAT 5/9/2011 1:55PM

    Thank you for sharing about your surgery. One of my goals is to lose enough weight to have a tummy tuck because I had 6 kids and my belly skin is way too stretched out. Was it scary? How long was recovery?

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MAGIC10FINGERS 4/5/2011 11:41AM

    So sorry U struggling with allergies. So is our youngest.
VERY cool U were able to get back to Zumba. I'm scared to try it again since my hip was so bad after the last time & is now feeling good.

I LOVE reading how much U work out. It's SO inspiring!

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ELAOPET 4/5/2011 8:06AM

    Oh, you DO workout like the best of them! Can't wait to start myself! THEN I'll be OK!
Sorry about the pain, but when you do lose the 30pounds you'll see how you feel then! Do you do enough cardio?
I just saw a blouse in one of those flyers you get every day. I love it and showed it to dad. He said I never used to wear clothes like that. I said, Of course I haven't! I will be able to do many things I never could now!
Oh, PJ, this'll all be so worth it, won't it! LUCKY US! emoticon

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DOLLBABE56 4/5/2011 7:05AM

    If anyone can do, you can PJ.

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sick month, dialing down and waiting for spring

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

  Member Comments About This Blog Post:

ELAOPET 4/5/2011 4:38AM


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ELAOPET 2/19/2011 2:35AM

    Yeah. hands up if anyone else here deals with bad stuff by eating bad stuff...Hey! Watch out lady, you nearly poked me in the eye! EVERYONE'S HANDS ARE UP! Seriously, patience is a virtue and having it would be so ...virtuous. Did I say that right? Non english speaking here!
I hope you get better soon and get to work like it's nobody's business! I got all that you've been through ahead of me, so ...nervous now, complaining about patience later. LOL

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MAGIC10FINGERS 2/17/2011 10:34AM

    I do the same thing. When I have no energy or desire to go to the gym, I try to blame it on me being lazy. We aren't lazy people, so we need to learn to not be so hard on ourselves.

Hope the ear thing clears up soon, I HATE having the dizzies while @ the gym, which is most days. LOL!

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ZZYYGGY 2/16/2011 5:51PM

    hope you feel better.

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