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Continuing the Battle


tonyfrasier

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I came to the boards with a vengeance in late October; a bit part of it was I felt I was losing ground and was looking for some support and advice to try and change the tide. I've been away the past few months because I got that bad. The community here combined with my will to fight and my initial care team 700 miles away I was able to get my garbage doctor here to run some tests. I call him garbage because anytime I went to him with my issues he would remind me that I had a stroke and I needed to rest and pace myself...like any of us forget that we had a stroke. Out of those tests my liver tests, triglycerides were though the roof. Now I thought it was just a vitamin D issue, coming home to winter, less of a social life and getting out which means WAY less sun than I was getting. I was diagnosed with statin myopathy. Now looking back I was starting to have these side effects back to when I was learning to walk again so I really thought it was a side effect of the stroke. I started questioning when I peaked and then started going backwards again. (my inital rage post is here)

 

I never thought of side effects of the medication, really wish I had. But seriously, who would think of medication when the side effects can take 2-6 months to show?!?! I felt the difference when I was off it for just a day. A month later I started feeling functional on a day to day basis vs. every 3-4 days. I vowed never to go on another statin again...famous last words. Because of my triglycerides I got referred to a cardiologist, but it would take a month to get an appt. Which was fine because I was excited that I might actually enjoy my holiday to Jamaica 24 Dec thru 1 Jan.

 

The get away was amazing. I didn't have all my endurance back, but enough to enjoy our relaxing trip, and even stayed up till midnight on NYE!

 

Last week I saw the cardiologist. He made sense on needing to be on a cholesterol med and talked me into a different weaker statin, but I wouldn't cave until he atleast agreed to 20mg vs 40mg. I'm a healthy man. I watch what I eat and even track it (minus the weekend) and exercise nearly everyday. Exception when the myopathy was in full force since exercise causes the side effects to be multiplied. My tests before the statin but after the stroke were picture perfect (they were perfect before the stroke too) Now, here I am three days into the new med with the symptoms coming back faster and harder. The difference this time I now know the enemy and can adjust.

 

*Switching Gears*

 

My vacation to Couples Resort in Ocho Rios Jamaica was amazing!! Though it would have been nice to have more endurance, it was wonderful to not worry about life. Eating, drinking, sleeping when I want, where I want was much needed. My first time off since my stroke. They had flag on the beach so you can "summon" a server to order drinks and food. The food was amazing, even the beach bar had a culinary trained chef!! I did go to the gym one days, did yoga about three times and spent some time swimming, but that wasn't able to stop me from gaining five pounds in nine days! :Gulp: For those that my travel to Jamaica, they have a company that runs a VIP service in the airport called Mobay. Depending on when you land and leave it's worth it just to get the personal VIP walk though Customs. When we landed it took everyone else 2.5 hours to get though customs when it took us just 20 minutes. They also have a private sitting area with free drinks and snacks till your ready to leave.

 

Nothing beats a 85 degree Christmas in the Caribbean!! If it loaded correctly, here are some pictures to share!!

 

 

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Oh, last note.  I'll get working on my story again once I'm back to normal. The computer takes a ton from me and I balance my energy that I have with what I have to do. Exercise routine first and then back to my hobbies!!   :juggle:

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very glad of your good time in Jamaica and that you have someone to share it with!

 

kind regards to the both of you

david 

 

ps with regard to the statin, I was first put on simvastatin and almost immediately cramped up.  switched to pravastatin and no obvious effects. pharmacist said a lot of people have problems with simvastatin.

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Getting away, for a day or two, or for a week, is a lot of work now but well worth it!  We love Jamaica, hope to get back there someday and just kick back.   No better way to relax, mon!

 

I too am suddenly getting liver tests that are elevated and am telling the doctor that I think it's the statin myself.  I too have 40mg of a generic, they tell me it's the equivilant of 20 mg of a brand name.  But something isn't right, I eat well too, healthy and low carb, so it's not that.  I was fine for about a year after I started and then the results started coming back bad.  A few months ago they sent me for a liver sonogram and want another in six months.  I truly believe they are slowly poisoning me!

 

So far I've only had the nerve to let it go if I forget to take them before bed, which is once or twice a week.  But I'm thinking of taking more drastic measures myself, like maybe cutting them into smaller pieces since the doctor (new to me through Affordable Care) is not sympathetic.  Then 'llI just monitor my own tests and see the results.   Please keep us updated!

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Looks like  wonderful place to leave behind the winter snow, mind you  holidaying in Australia with our glorious Christmas plus summer takes  bit of beating...just saying...lol.

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