Why are you sitting there reading my blog?! If you can get up and get outside today and move, please do! Let the wind kiss your skin and run freely until your legs feel like jelly, please do that for me. Ok? I was going to go for a 5+8 mile ride but now it is raining cats & dogs! Guess I will do laps in the hotel hallways- the carpeting makes it hard to "push". Oh well, I need to practice what I preach. I hate the numbness in my hands as I type this blog to you on my Blackberry. One more symptom we MS Warriors share. Health Update: I'm having my skin cancer removed in 2 wks. 4 inches of my left shoulder removed, 3 hr surgery & you are wide awake! Then no upper body workouts for 2 to 3 mos. Grrrr! God Bless you all!
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Just got back from a 5 mile ride in my chair. 78 degrees today. Not many more like this in the near future. Lord how I miss Arizona! Be back by spring- I cannot wait! Today is about a "5" pain wise & that is as good as it gets...A good day for me would put most non-M.S.ers in the ER begging for morphine. Ironic. We get used to so much: Spinal Taps (L.Ps) multiple blood tests, I.V.s, urinary catheters, wheelchairs, walkers, no more driving, just to name a few & if you are a man; Viagra (Where do they get off charging $28 a pill for that?) Insurance companies don't think M.S.ers should be able to have a love life? Strike that insurance companies think we should pay to have a love life.. Last time I checked that was illegal... M.S.: the gift that keeps on "TAKING" Be safe & God Bless Howdy folks! I had a nice treat; my wonderful wife Kathy has a 3 day weekend & we are spending every minute together w/our silly dog Halligan (we named him after a firefighting tool), got him from the shelter & trained him ourselves to be my service dog & he is so fun & funny! :) My poor wife works full time on top of taking care of me. I know all of you caretakers and family members can relate-she's had to learn so much about medicine, shots, I.Vs, catheterizing & pathophysiology. It does help that I was a Paramedic Instructor. Things are getting a little tight right now... Who I am kidding? We are so broke we can't "pay" attention. Too broke to "change" our minds ha ha ha! At least we can still joke about it- my MS may steal nearly everything I got but it will never deny me my sense of humor...Lucky you! :) My medical expenses & co-pays eat up my pension & even though Kathy has a business degree & worked for Merrill Lynch for 20 yrs all she has been able to find is a minimum wage job. We can't get ahead & want to move back to Arizona but we can't afford it. It's a mess! All of our furniture and personal belongings are being held up at a moving company in Phoenix and we don't have enough to move our belongings out here, which is one of the reasons we're calling a hotel room home. Keep us in your thoughts and prayers! Good health to all and God Bless. Good morning my fellow MSers and Team #GPP! I am one of those lucky few MS Warriors that has "Parkinsonian Effect" which makes my ten lb head (yes folks I can admit it... I have a big head!) bobs continuously unless I am lying down with my head cradled in a pillow and what fun is that? It makes working out hard. Every 3 mos. I have to have eight I.M. injections in my neck muscles which over the next 2 wks calms the problem by aprox. 90%. If any of are y'all have this malady tell your Nuero to look into it. It works! It stops the neck tremors which are quite painful. What is this wonder medication you ask? Botox-(Anabotulinum Toxin A) Large dose; 300mg. Cosmetic doctors use 1-5mg. You may feel sick for a day or two but the results are well worth it. God Bless all of you! Patrick Taylor NREMTPA This flare up doesn't seem like it will ever end. Not getting my work outs in except for my daily 1,000 crunches, my dumbbells & 5 miles in my chair. Lots of pain today...oh well. Tough ride today. I am NOT going back in the hospital this time. God Bless you all. Another MS day. 4th doctor appointment this week. Nothing new...She is a caring doctor but she admits that I know more about MS than she ever will. That is true of us all. Sad. Wouldn't it be nice if the cell phone companies donated half of the billions of $ they're making on these new phones to MS Research? Maybe they might be able to figure out what causes this cursed disease. My phone works just fine & it's a 4yr old BlackBerry :) that I am typing this Blog on right now. Peace, health, love, & God Bless Another day of beating myself up at the gym & a 5 mile ride. I am tired & need to rest & so I will. Kathy is at work but will be home in 2 hrs! Yay! I am hurting today. I saw my BOTOX Specialist this morning so next month I will get 8 Intramuscular injections (big needle) in my neck because in addition to my MS- I am unfortunate to have Parkinsonian Effect (a form of Parkinsons) which only affects about 1 in every 1,000 of us MS Warriors. It causes my head to "bob" incessantly. More pain; FYI your head weighs about 10 lbs. The BOTOX reduces the bobbing by about 90% which is a major relief. It only lasts around 2 months and the insurance companies only pay every 3 months, so I go back to misery in 2 months. God Bless you all. How are you all feeling this fine almost Autumn day? I hope great! Me, I am getting ready for the gym. I am back from my 2hr workout. Arms & legs...ouch (: I don't know how I do what I shouldn't be able to do but I do it. If I can inspire you to do anything, it's this- do ANYTHING YOU CAN to fight this eventually deadly affliction. You are the only one that can buy yourself time. God Bless you all. Feeling better today. MS- every day is different. To borrow a line from a fellow GPPer, Mr. Forest Gump- "Life is like a box of chocolates, you never know what you're going to get"...Of course a "good day" for me would put most people in the E.R. screaming for morphine. Me-- it means I can beat myself up at the gym for 2hrs & go for a 5 mile wheelchair ride. Done. (: My wife has the weekend off (: YEEHAW! & she will be home in 3hrs! The dog won't be sleeping between us tonight (; !! I pray that my fellow MS.ers have a good day & weekend. Remember to enjoy what good you get; it is not all bad. We are all in this together; what a nice club to be thrust into without our consent. God Bless you all & if you are from the south God Bless y'all (:
Typical day after my 2 hour gym workout: chest & back. Sore, duh! 80 plus sets. I don’t know if it's my hard work or MS. duh! Back to crawling. Watching my wife get ready for work. Bitter sweet because I get to watch my beautiful best friend but it means I get to be alone for the next 9 hours. I hate that. Sometimes I feel like a little boy, trying to learn how to walk again,' wearing Depends "briefs" which are really fancy adult diapers. Sure they beat the alternative but call a spade a spade. So many things I will never do again that I always loved; hiking the mountains, mountain & road biking, motorcycling, heck just driving!!!! You DO get used to it but sometimes you might wish this was a "terminal" disease because @ least then you would know how much time you had left. I AM happy to be alive & have a beautiful loving friends like Lauren of the greater purpose project.com. Don't ever give up or into it. I don't & never will. My wife came up with a new meaning for M.S. : MY STUD. I try to live up to that flattering nick-name (: Peace to all.
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AuthorI'm a retired firefighter, loving husband, proud father, bad joke teller, gym rat. I've been called a warrior who is battling Stage 4 Multiple Sclerosis and Parkinson's Disease. Rather than letting it define me- I'm redefining what it means to live with these diseases. If I can look on the bright side...So can you! ArchivesCategories |