POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: aztecan on November 03, 2010, 02:24:54 am
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Those were the words my doctor said to me. :'(
I was having a chat with my doctor today when he holds up a medical journal, can't remember which one, which had, as its lead story, "Neurocognitive Disorders Among HIV Patients."
It was all about us LTSers.
This came on the heels of a discussion about DEXA scans for HIV patients, and how we might not get them because insurance companies are balking at paying for them.
It also came after a discussion about my lipids, which, by the way, I have to have check again next week. My triglycerides, which are supposed to be below 200, were a delightful 112 the last time. :)
But the LDL still sucked, and my HDL was still marginal . We have recently upped the Niaspan to 750 mgs a day, so that might help the HDL.
I asked if diet can alter the LDL. The doc said, "somewhat." ???
I have been exercising again. I do a workout with cardio and strength training on Mondays, Wednesdays and Fridays, and I swim laps on Tuesdays, Thursdays and Saturdays.
I don't do squat on Sundays.
But my legs have started to cramp when swimming, even just four or five laps in the pool, which is just the usual olympic size.
I am somewhat concerned my CPKs are up again. I guess I'll find out next week, since I just noted the doc included it on the lab order.
EEP! He also is checking my CD4 and viral load! It isn't time yet. It has only been four or five months since the last time. :o
At least I think its been four or five months. I am foggier than I used to be. I feel I am fighting to maintain clarity in my mind - and I'm losing.
If that starts to happen, screw the diet. I'm eating bacon and real eggs. Better a heart attack than an Alzheimer's ward.
Don't mind me, just a less than stellar day.
HUGS,
Mark
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Oh honey, I hear you....seems as if we're always "on alert" for the next medical issue, or waiting for the "other shoe to drop". It sure gets old doesn't it? I am so with you on the Alzheimer's thing....I'd rather not be here, than to be here and "not really be here". It makes me get cold chills, just thinking about it. I don't want to end up a burden to anyone; have already gone through that plenty.
All we can do is to do our best to stay strong, stay well, stay active, and just keep on keepin' on. But I hear what you're saying, some days it is just so hard to do that ! We wouldn't be human if we didn't let our minds venture over to the 'dark side' sometimes....
Hope you can find out about the leg cramps...that is disturbing. Oh, and have I told you lately that I really admire you for all you are doing to try to stay healthy? Exercise and eating right....I wish I could be half as diligent as you.
You are much loved, and appreciated.....
Alan :-*
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These bloody tests and numbers , and Mark we will mind you so you enjoy some Delicious free range eggs and organic bacon hugs back to you
love
michael
ps real butter on the toast
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Mark, if I was anywhere close to ya, I'd give you a big naked BEAR HUG, then tell you it's gonna be alright
but I cannot :( so here's one just for you Mark :D I know it's not much, but I guess it will just have to do :-*
{{{{ NAKED BEAR HUGS }}}
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{{{{ NAKED BEAR HUGS }}}
I'd give you one of these too but I wouldn't want to make you feel worse :-\
Mark- You are doing a great job excercising and taking care of yourself, maybe it will take awhile for your numbers to get where you want them. Are you stretching enough before you swim? Stay strong and I hope you feel better.
XO(fully clothed)
Snow
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I'd give you one of these too but I wouldn't want to make you feel worse :-\
And you know this because of WHY? Please explain how this would make dear ole Mark feel any worse we all want to know?
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Mark
If you feel a bit foggy...its no wonder...I couldnt keep all those numbers and doses and percentages and tests and results....in my head. So, I congratulate you for the great job you are doing in being involved in your health care.
Not to mention....you still work, and live alone. Geez, a bit hard on yourself arent you?
Joel
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And you know this because of WHY? Please explain how this would make dear ole Mark feel any worse we all want to know?
Because I would be a naked female and not a naked male. I was kidding.
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Because I would be a naked female and not a naked male. I was kidding.
A Hug is a Hug, both would work for me, hugs are encouraged around here, and they are FREE ;D
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Mark,
I understand your frustration here. The leg cramps have been a problem for me for the past two years. My toes cramp up nearly every night. The DR says it's the neuropothy. Who knows.
I think it's great you are exercising I know how hard simple exercising is. But we need to keep on keeping on dear friend! The LTP world can be so frustrating at times. Keep up the good fight, I know you will.
And thanks Snowangel. You have a great sense of humor. I greatly appreciate it!
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Oh Mark, I hope your CPK's aren't becoming problematic again, that would suck.
You do damn good with your exercising, trying to maintain a good diet, working still, etc. I pale greatly by comparison. I don't know how you keep track of all the labs, cholesterol, LDL, HDL etc. I keep my labs, but I don't remember them much past a couple days. I sure hope things get better for you!
Oh by the way, I have a bit of elevated cholesterol also, but I still love bacon. ;)
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Oh Mark, I hope your CPK's aren't becoming problematic again, that would suck.
You do damn good with your exercising, trying to maintain a good diet, working still, etc. I pale greatly by comparison. I don't know how you keep track of all the labs, cholesterol, LDL, HDL etc. I keep my labs, but I don't remember them much past a couple days. I sure hope things get better for you!
Oh by the way, I have a bit of elevated cholesterol also, but I still love bacon. ;)
;D hey betty, you only live once, I love it too :D
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I had my blood drawn today and received some of the results this afternoon.
And the news is pretty good!
My overall cholesterol, which supposed to be less than 199, dropped from 204 in September to 184 today. ;D
LDL, which is supposed to be less than 130, dropped from 153 to 134, still a smidgen high, but the doctor said it is not really bad and I can live with it.
HDL, which is supposed to be 32 or more, rose from 29 to 30. OK, not a huge leap, but still an improvement.
The really good news is the triglycerides. They are supposed to less than 200 and were 111 in September. They are now down to a round 100. ;D ;D ;D
Thank you, fish oil and Niaspan! ;)
Of course the Mediterranean/vegetarian diet and exercise probably helped too.
Naturally, there had to be bit of something for the doctor to shake his head at. As I suspected, my CPKs are up.
They had dropped to 482 in September and are supposed to be 230 or less. Today, they are up to 618. That is no where near the all time high of 2,857 measured in March 2009, but they are creeping up again.
At least that explains the muscle cramps and the aching legs.
Of course, since I just did the blood draw today, the CD4 and viral load aren't back yet. I am not particularly concerned about them.
Maybe I am too blase', but after all these years, I don't worry about them until I see them, if then.
So, the diet and exercise have worked. Oatmeal, fish oil and tofu smoothies are beating down the fat nasties in the blood.
Tonight I had vegetables (eggplant, patty pan squash, onion, tomatoes, mushrooms) sauteed in a bit of olive oil with cubed organic tofu, which I served over brown rice.
It was quite yummy. Gad, I think I am starting to like this new way of eating. :o
HUGS,
Mark
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Ug, oatmeal, tofu and fish oil smoothies just don't sound appealing to me, Mark.
Good news on the cholesterol and triglycerides, but sorry about the CPK's. Do you know what's going to happen regarding that?
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Ug, oatmeal, tofu and fish oil smoothies just don't sound appealing to me, Mark.
Good news on the cholesterol and triglycerides, but sorry about the CPK's. Do you know what's going to happen regarding that?
I guess I am lucky. I like oatmeal, don't mind taking the fish oil and am OK with tofu smoothies, although they are not my all time favorite.
As for the CPKs, well, not really much to do about them at this point. When they were over 2,000, they were dangerous. As they are now, they are annoying, but something I may have to learn to live with.
I know someone else who has the same issue. He said the same thing - he has just had to learn to live with it.
The real culprit that caused the problems last year was a statin. Since then, the doctor won't even talk about putting me on a statin unless the lipid issue went totally nuts - which I am going to try not to let it do.
Its funny, though. I am actually starting to enjoy the new foods I have added to my lifestyle.
Go figure. ;)
HUGS,
Mark
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Good news Mark , when I said bacon and eggs you know I meant nut burger and salad ,
love & hugs
t