POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: Theyer on December 03, 2010, 05:57:48 pm
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I am struggling at the moment I have an appointment next week to review the tests made for automic neuropathy and I hope that will at least address the low blood pressure. However my body is out off balance and managing the daily problems and pain is getting very, very, very boring. I have had these problems before most often I re- balance though other occasions it has been the forerunner off something serious.
I hate the dullness off illness, for someone who never usually experiences boredom, its always a good indicator to me when I realize I am bored, that I am poorly.
The whole off the UK is covered in ice and snow, I am in London at the moment, the pavement outside my flat is ice and so hibernating is not the worst thing.
moan over
t
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You poor thing... sounds awful, and compounded with that miserable weather which yes I've been following on the news and via friends on facebook who live in London. Mebbe you need a wretched Meg Ryan flick to cheer you up (?) along with hot cocoa, and a handful of sedative.
Anyway, I hope you get that neuropathy sorted out soon. I'll be thinking of you, Theyer.
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I really do empathize. When I am having my low (no) energy times (days? Weeks?) I get so goddamned frustrated. I need to DO something.. anything. Not much is worse than being just healthy enough to know how diminished you are.
I really hope things go well for you at the doctor, and that this is NOT a forerunner of something more serious.
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Oh Theyer, I'm so sorry you're going through this shit. Low blood pressure is frustrating, with the dizziness etc. I hope your doctor can help you with this, and whatever else your poor body is going through.
Ice and snow, aye? I don't like snow much, and like ice even less. (Even though I've lived in snow country my whole life.) I hope you're able to do something enjoyable, soon!
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Theyer,
Sorry to hear that you are not feeling well. I hope you get yourself sorted soon.
Hang in there.
Best.
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Hey Theyer,
I will echo what Jonathan said. I hate that imbalanced feeling, or as he put it, feeling good enough to know how poorly you actually are.
The boredom is also another familiar face.
I hope you get the neuropathy issue sorted out. Having been there myself, I know how frustrating that can be.
BIG HUGS,
Mark
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HUGS to ya buddy :-* I have that awful feeling too, and like most others, I've been there many times before
it hurts, it's painful, and it's a real bugger too, I hate not being able to feel my feet & hands sometimes, hang in there Theyer, I know you'll get to the bottom of all this soon :)
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Inconclusive visit to Doc, good news 300 CD VL neg and no "obvious infection markers "
However I do not feel great and now its still test after test to wait for off to oncologist as HIV doc wants his input. Agreed that he would tell me asap if this is as good as it gets and not continue with test after test, ashamed to say although I had to give 300ml off blood for cultures to be grown ,cannot for the life off me remember what the fuck for. OH well find out when I see Cancer DOC. I guess I will have to make notes in the appointment as well as beforehand.
Alot off my readings where in the high area off safe, with sugar levels again not at all good, however they do not explain the symptoms I experience.
Many thanks for the support, it really does cheer.
One day I would like to write about how long term illness affects social groups, I certainly had far more support when i was first ill 15 years ago . So for anybody reading this who does not comment see how much manageable happy ease it is with HIV+ and insist on using condoms if IT goes up yer.
Clearly mhtv is in a really good mood at the moment.
mhtv
edit/cos I left out an " it "
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Thinkin about you
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Sometimes it's so hard to struggle on, not having answers. Theyer, you're in my mind, and I'm hoping for the best for you. :-*
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Thanks folks,, feeling somewhat better as pain control meds where increased and it has had a good affect on leg bones, usually I find one reduction in pain has knock on effect , it relaxes the muscles,, easier to move around ,body more active, blah blah blah...
take care
mhtv
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Well I have been in hospital for 6 weeks Two bouts off p.c.p. then due to collapsing with low blood pressure 3 breaks in the ankle and chin bone, cast up to my knee, 3 pins in the break. Cast comes off on tuesday but due to the osteoporosis I will have to wait for the x-rays to see what next. AM-managing fine at home with essential help from friends , but I am exhausted by the end off the day. Hopefully things will proceed in a more enjoyable manner, I hope to catch up on the news . Sadly no access to computer in hos, as I missed the site often.
Anyway its good to be home
love
mhtv
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Welcome back ... Its a shame we couldnt show our support for you while you were in the hospital but now you are home and on the mend please keep up updated . That is a nasty list of what you have been through , poor guy ... be well soon .
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I'm glad your on the mend, feel better hon, as I'm sure you will, greetings form the southwest USA :-*
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Theyer.. ???
Did you fall down some stairs? You're going to have to wear high tops for ankle support....
I absolutely hate hospitals...tolerable for 2-3 days... 6 weeks : intolerable
You must have been climbing the walls.
Glad you made it home and that you have such good friends to help with your convalescing.(was that a word?...hey, it accepted it)
Take care of yourself, and don't over-do....
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Theyer,
Sorry you are suffering with all of this pain. Hang in there man. I hope you get well fast.
HUGS
JEFF
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Damn Theyer, that sounds just terrible. I hope your recovery goes well, please keep us updated. :-*
L-
Betty
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PCP? Wow, thats really unfortunate. I am wishing that you have a fast recovery. When my previous partner Paul had PCP in 1991, they put him on a nebulizer that aerosolized the pentamidine. Nasty stuff.
I forget, what is the treatment today?
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many thanks one and all
bear--my discharge report said I was treated with clarithromycin vancomycin tamiflu
As i recovered this was 'rationalised to moxifloxacin, the 2nd flare up treatment also included ciprofloxacin
Basically it was a emergency admit as my cold suddenly prevented me from breathing moving at the same time ,they just in the words off my doc chucked everything at it , the second flare up was described as a chest infection though I could not feel any difference.
Nebulizer used through out treatment ,but I think mainly to clear lungs off dark moss green glupe and aid breathing I only remember ampules off sterilized water and coughing until I expected to see my lungs.
leg broke on hos room bathroom floor collapsing with low blood pressure.
To be honest first 3 weeks is a blur with highlights clear as a daisy.
Hopefully cast is removed tomorrow and all cheer at fantastic recovery , I will let you all know again thanks for the replies, time now to rest
mhtv
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*flashback*...on remembering the 'highlights' ....there's no telling what they do to you in between :o
I had a similar experience last year of not being able to breathe or move...it HURT....I was pretty delirious...turns out I had bronchial pneumonia and then after that diagnosed with COPD.
They gave me morphine...and i was still climbing the walls....
do you take blood pressure medications?
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Wow Theyer,
Sounds like you have been through it. I hope life becomes smoother for you from here out.
I will send copious amounts of healing energy your way.
HUGS,
Mark
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CAST IS OFF JOY OH JOY
i have the skinniest right leg in London.
BUT I DONT CARE COS CAST IF OFF
love to all
mhtv
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Great news. I'll bet it feels good to be able to wash and scratch again.
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Congrats on that, Theyer. Now eat something, and channel all the calories to your arm! :)
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yeaahhh...
i wonder if a cast around my midsection would produce the same effect? ::)
glad you're mobile again...
Ronnie
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Ron I do take blood pressure drugs the increase in dosage has greatly reduced the pressure drops.Its Fludrocortisone 125mg a day.
As to encasing your tummy in plaster, well I am sure some clinic offers it,however as a strapping 6 ft 130lb LTS I say keep and love that tummy.
The day I had the cast off will stay with me for a number off reasons, how rushing to get the transport to the Hos I forgot to put in my dental plate, and how I also managed to pick up a very violent diarrhea bug could not off had a stronger reminder that two legs usefull 5am wens loading washing machine.
Bt did you mean my leg ?no matter anywhere would be usefull
Right my dear ones I am about to get ready to be taken out to lunch, First time this year, no 2nd.
So giddy with excitement I am away to hunt for dental plate and,Imodium tablets my inner botox.
love
theyer
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ok...I'll love my tummy... :D
Where did you go for lunch?
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See Ron, that was easy
My dear friend and I lunched at Fantasia your every day Morocan/Engish local feastarama serving the locals off London SW4.I walked there and back and am now hurting but in that happy getting better way.
It does feel so good to be doing these everyday things,
love
theyer
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Sounds like a good time.. and delicious...reminding me that it's nearly lunch time and I am hungry.. :D
They keep telling me that walking is the best exercise...especially if you can't do anything else...I just wish my legs/feet/and hips would listen... :-\
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Well although it is great to have the cast off ,I wish the surgeon had given me some warning off the pain still to come. Today is fine I feel confident that the foot is healing , but there has been sleepless nights where I was convinced the foot had fractured again. My Tolerance for pain and sleep meds during theses periods worries me also. My stash off pain killera from the cancer years is no more.
Should off been celebrating my smart new eating machine dentures but to the embarrassment off 3 dentists they really, really did not fit.So much so that the process has to start again, with new moulds taken and made. I was thanked for my patients and calmness, however if they had known how much morphine was in me they would praised my ability to remain conscious.
See my HIV doc Tues ,so I hope there are no surprises awaiting and i can start to restock the pain/sleep stash, though at the moment I have not had to add any extra for 36 hours.
Love to all off you
theyer
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Theyer, I hope you get more meds soon!
I can sympathize on the dentures thing. I have a terrible over-bite, and when I got dentures in '89, they had to call in a specialist from the lab, to make a special top denture. They never could make a bottom one to fit. Ah well. Hope you have more luck!
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Theyer,
Keep on getting better! You can't tell, but I'm lifting my kilt for ya'! That should give you a laugh! ;D
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Marco, it does / it has / but now I Know How you tie your kilt I am discreetly looking away.
Honest
Many thanks for a LOL strange I suddenly have the energy to do my physio exercises
t
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.. :D..never under estimate the power or a lifted kilt..
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Spent Tues a at the Hospital seeing HIV Dr,Physio< and as the Physio was on the ward lots off the nurse &Dr,s who I lived with this winter, very jolly .
Foot and leg received the AOK also had a Physio session to perfect one crutch walking.
If the orthopaedic Dr had only said the healing process would be so painfull he would off saved me heaps off anxiety, which I will tell him in 4 weeks time.
Very pleased with myself Tues evening.Woke up Wens 3.30 pm stiff as a board and not so cocky and pleased with myself. However Thurs now woke am with normal aches .So now I will Take myself out for brunch, practising the one crutch walk, wish me luck friends
love
theyer
Betty--- Stash fully re stocked by good Dr
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Hey Theyer,
Congrats on the improvements. Hope you had a great brunch!
HUGS,
Mark
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Theyer, glad you were able to get more meds. Good luck with the healing process! :-*