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Author Topic: Changes  (Read 20978 times)

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Offline Miss Philicia

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Re: Changes
« Reply #50 on: January 30, 2008, 11:04:05 am »
Congrats Debra -- those numbers should be very encouraging for you!
"I’ve slept with enough men to know that I’m not gay"

Offline bear60

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Re: Changes
« Reply #51 on: January 30, 2008, 12:29:22 pm »
I'm wishing you all the best. The best of luck!
Poz Bear Type in Philadelphia

Offline Just John

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Re: Changes
« Reply #52 on: January 30, 2008, 04:48:42 pm »
Hi Debra

Glad to hear the side's are subsiding nicely and you're achieving good results.

I'll drink to a long and happy regimen.

John
Some cause happiness wherever they go; others, whenever they go.

Offline sweetasmeli

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Re: Changes
« Reply #53 on: February 05, 2008, 04:32:18 am »
Hello, me again. Thanks to all of you who are following this thread. :-*

Yesterday was an icky day. I was on the tail end of a cold that started about 6 days ago and yesterday morning I woke up with a nasty sickly headache and started my day by throwing up; as it turns out, I also ended my day by throwing up too, with lots of episodes in between too. In between these episodes I just slept.

Long story short, I was faced with a judgement call last night: At 9.30pm I was still puking and due to take my meds at 10pm. In short, I felt like death and the prospect of trying to ingest a couple of huge pills, when a few sips of water weren’t even staying down was not enticing at all. So, after a phone call to the nurses at clinic, a Skype type with Matty and a phone call off Matt the Newt (tank yoo guys! xx), I decided to skip the dose and opted for sleep instead. Good news = I woke up this morning and didn’t puke! Huzzah!!

Anyway, ickiness and nasty viral cold thing aside, I think (I think!) the side effects from the meds are abating a little. The nasty angry cloud has lifted and I'm feeling in less of a haze than I was. And I’m starting to want to do stuff again anyway, instead of just simply doing it (if that makes sense).

Although, saying that, I’ve noticed I’ve started struggling more and more to get to sleep after taking my meds at night, even when I try to sleep straight away. The few nights prior to last night I’ve been tossing and turning for over 2 hours before sleeping; despite being tired. And now I skipped that dose last night, I think I can suggest that my struggles to sleep are linked to the meds, as last night I dropped off like the dead. And that was despite spending most of the day sleeping as well! Unless of course I was just so exhausted from all the puking?!

Anyway, I’m coming up to my 2 month mark soon; I said I’d give it to 3 months, but as the nasty emotional side effects seem to be easing off, I’m now actually thinking I’ll give it 6 months. Hmm, we’ll see. And I’ll be sure to keep y’all posted…

Ugh, I hate puking! My stomach muscles feel like I did 10,000 sit ups and I'm weak as a kitten...meow! Speaking of kittens, my furries were wonderful yesterday, stayed with me most of the day...despite me nearly throwing up in their kitty litter! :-X 

Edited to add: It would appear now that puking has been replaced with squits this morning. Scheiße!! >:(

Debra   
« Last Edit: February 05, 2008, 05:28:25 am by sweetasmeli »
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(,,,_ ,,,)/   (,,,_ ,,,)/ Cats rule!

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Yeia kai hara (health and happiness) to everyone!

Offline Dragonette

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Re: Changes
« Reply #54 on: February 05, 2008, 05:49:19 am »
Hang in there Debra... there are other meds to take if you decide this combo isn't for you. Glad you're emotionally better. I had insomnia on Sustiva too.
"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline BT65

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Re: Changes
« Reply #55 on: February 05, 2008, 07:11:42 am »
Hi Debra, sorry to hear about all the nastiness going on with you.  I hope things subside quickly.  I'm going to my doctor today and we will try to figure out a better combo for me to take; I can't take Sustiva.  I just told my doctor that my mental health walks a fine line every day and I can't do anything to push it over the edge.  But if it's working for you, that's great.  Hang in there sweety.
Peace~
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

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Offline Iggy

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Re: Changes
« Reply #56 on: February 05, 2008, 08:48:33 am »
Debra,

I'm sorry last night was so rough but am glad to read that the worst seems to have subsided by morning.  I agree on giving the meds one more month before making any decisions.

Take it easy on yourself today.

Mark


Offline 404error

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Re: Changes
« Reply #57 on: February 05, 2008, 04:35:58 pm »
This thread isn't at all encourging me to want to take meds...  I hope you feel better Debra and that the adjusment gets easier for you and your body...
A social critic who promotes equality...

Offline AlanBama

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Re: Changes
« Reply #58 on: February 05, 2008, 06:49:28 pm »
I hope you get over the cold/bug quickly!   

Glad you are sticking with your meds.   I know how hard it is to keep doing something that you feel is making you ill.....so I hope everything continues to improve.   Your numbers are looking good !

Love & hugs to you, my sweet one....

Alan   :-*
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline milker

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Re: Changes
« Reply #59 on: February 05, 2008, 10:14:59 pm »
Wow. This reads like a journal.

Thanks Debra for telling me to check this thread, as I missed it. You are a source of inspiration as I am getting prepared to get on meds real soon now.

Luv,  :-* :-*

Milker.
mid-dec: stupid ass
mid-jan: seroconversion
mid-feb: poz
mar 07: cd4 432 (35%) vl 54000
may 07: cd4 399 (28%) vl 27760
jul 07: cd4 403 (26%) vl 99241
oct 07: cd4 353 (24%) vl 29993
jan 08: cd4 332 (26%) vl 33308
mar 08: cd4 392 (23%) vl 75548
jun 08: cd4 325 (27%) vl 45880
oct 08: cd4 197 (20%) vl 154000 <== aids diagnosis
nov 2 08 start Atripla
nov 30 08: cd4 478 (23%) vl 1880 !!!!!!!!!!!!!!!!!!!!!!!!!!
feb 19 09: cd4 398 (24%) vl 430 getting there!
apr 23 09: cd4 604 (29%) vl 50 woohoo :D :D
jul 30 09: cd4 512 (29%) vl undetectable :D :D
may 27 10: cd4 655 (32%) vl undetectable :D :D

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Offline sweetasmeli

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Re: Changes
« Reply #60 on: February 06, 2008, 12:10:05 pm »
This morning I was delighted to wake up to no puking, no squits and (oh joy!) no headache, so I'm hopeful that the nasty bug I've had is passing. Body's still exhausted but that will probably be from having not eaten much at all for 2 days! I’ve just remedied that by polishing off a small plate of chicken, rice and mashed potato. :)

Oh and I took my meds last night again like a good girl. Slept ok too. So, fingers crossed...

Thanks for all the get well wishes, folks! :-*

Debra
/\___/\       /\__/\
(=' . '=)    (=' . '=)
(,,,_ ,,,)/   (,,,_ ,,,)/ Cats rule!

The difference between cats and dogs is that dogs come when called, whereas cats take a message and get back to you.

Yeia kai hara (health and happiness) to everyone!

Offline BT65

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Re: Changes
« Reply #61 on: February 06, 2008, 12:43:16 pm »
Debra, so glad you're feeling better!
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Condom and Lube Info https://www.poz.com/basics/hiv-basics/safer-sex
Please check out our lessons on PEP and PrEP. https://www.poz.com/basics/hiv-basics/pep-prep

https://www.poz.com/basics/hiv-basics/treatmentasprevention-tasp

Offline sweetasmeli

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Re: Changes
« Reply #62 on: February 08, 2008, 03:36:27 am »
I realise this thread may not have been so encouraging for some of you faced with the prospect of starting meds; to be truthful though, it wasn't done for that purpose; more an honest documentation of what it's been like for me since starting.

As I wrote in my initial post here, I was dreading starting meds; I actually snapped at the locum consultant at my clinic when she initially suggested it was getting close to that time and left the clinic in tears. But after speaking with my main consultant a few weeks later, it began to dawn on me that I was faced with 2 choices, neither of them great: 1) I could just get on with it and start the meds, which was a guaranteed part of this journey anyway or 2) I could not start them and risk getting irreversibly sick instead.

That’s when I realised that I feared getting irreversibly sick a lot more than I feared starting the meds. I now know far too many people with HIV who have struggled and almost died without meds to play about with this. And after watching the forums’ lovely Christine die last year and watching Jonathan (JK), Kate (Penguin) and others constantly struggling, I have been forced to face the harsh reality of this disease:

Without the meds, HIV will most likely turn to AIDS; AIDS will kill me; and AIDS isn’t an easy or pretty way to go. I’m not a gambler at the best of times; I’m not about to start now with my health, with my life. I don’t mean to frighten anyone with my words, but as folk living with HIV, that is our reality.

I personally think deciding and/or agreeing to go on the meds is the final acceptance hurdle of living with this virus. And I think that's why it was such a difficult hurdle for me, as it is for others. I realise now that I'm not sure I'd actually fully accepted that I was HIV+. Over the last 5 years, I've ricocheted from being ok with it, to denying it, to hating it so many times; at times I've barely felt like I knew myself at all any more. But having to start meds to control it? Well, like it or not, that's what makes it real. And for those still struggling with acceptance, I think that decision is even harder.

As for my experience so far? Well, it’s coming up to 8 weeks this weekend and, in all honesty, despite the initial horrid rash and manic mood swings (that have now all thankfully passed), since making that decision and actually taking the plunge and starting meds, I have to admit that a weight has kind of been lifted off my shoulders; a weight I didn’t even realise I was carrying. The big question mark over when I would have to start meds has gone because hey, here I am on them now! And the even bigger question mark over whether I would cope or not also is fading because hey, I’m coping!

Do I like the fact that I’m HIV+? Of course not! Do I like that I’m going to have to take meds for the rest of my natural life? F**k, no! But I can tell you something for nothing: I’m bloody well thankful that I have that option, that choice. 

This latest bug has nothing to do with the meds, unless you count the fact that my immune system is now actually starting to work properly again, therefore actually reacting to outside bugs, rather than just getting battered by them. (I don’t know the exact science behind that; Newt did explain it to me but my brain has an automatic switch off reaction when people start talking science with me!) All I know is, despite feeling like shite for the last few days, I think the fact that I CAN feel like shite is a good thing. And, according to Newt, that’s probably down to the meds and my now recovering immune system (I think I’ve got that bit right…paging Matt the Newt for clarification?).

OK, I still do feel nauseous occasionally but nothing I can’t handle and yes, I’ve started having trouble getting to sleep, but I’m monitoring that and aiming to do what I can to help remedy it. For example, my plan is to get back to regular exercise as soon as I’m up to it again. Plus I’m trying to remember to do small things to aid my sleep like taking a relaxing bath and drinking chamomile before I go to bed.

I’ve been chatting with another forum member about his concerns about starting meds and I’ll repeat one of the things I said to him: When deciding to start meds, go into the decision positively; because if you don’t, chances are you could help to bring about your worst fears your self. I know that’s harder than it sounds but I believe it holds some validity.

I firmly believe in the ability to bring on and exacerbate stress and ailments, due to the state of our minds. Herpes and shingles are both perfect examples of how our emotional state and stress levels can bring on attacks. In a similar sense I believe if we start the meds believing they won’t work or they’ll cause terrible side effects then there is a higher possibility that they will not work and/or they will cause terrible side effects.

Of course, saying that, I’m also fully aware of the tragic fact that there are some people whose bodies simply do not respond well to the meds, due to one medical factor or another, regardless of how positively they may deal with being on treatment.

My point is when I started I tried not to focus on the possible side effects. I was aware of what could happen, but I made a pact with myself that I would go into it positively, believe that they would work and that I would navigate my way through any initial side effects. I was still nervous but I was more optimistic and kind of relieved in a way that I’d finally reached this part of my journey. The prospect of starting meds still filled me with fear; but experience has taught me that the only way we can conquer our fears is by facing them.

And, to be honest, so far so good methinks…

Many thanks to all of you for reading this, and for following and supporting me on my journey, folks. :-*

Debra

PS: Forgot to say, I'm feeling much better by the way. :)
« Last Edit: February 08, 2008, 03:57:16 am by sweetasmeli »
/\___/\       /\__/\
(=' . '=)    (=' . '=)
(,,,_ ,,,)/   (,,,_ ,,,)/ Cats rule!

The difference between cats and dogs is that dogs come when called, whereas cats take a message and get back to you.

Yeia kai hara (health and happiness) to everyone!

Offline BT65

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Re: Changes
« Reply #63 on: February 08, 2008, 07:35:48 am »
Debra, what an amazing person you are.  That post was a good way for me to start my day.  Good luck, sweetie.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Condom and Lube Info https://www.poz.com/basics/hiv-basics/safer-sex
Please check out our lessons on PEP and PrEP. https://www.poz.com/basics/hiv-basics/pep-prep

https://www.poz.com/basics/hiv-basics/treatmentasprevention-tasp

Offline sweetasmeli

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Re: Changes
« Reply #64 on: March 03, 2008, 05:02:27 am »
This is my final update for the time being.

Coming up to 3 months on the meds, I’m glad to be able to report that most side effects appear to have settled down; those that haven’t are (so far) manageable.

Recent labs are showing the meds are behaving and doing their job. CD4 count has climbed back up into the 400s and viral load is undetectable. So all is good there. Fingers crossed things will stay that way.

Many thanks again to all of you who have followed this thread.

Debra
/\___/\       /\__/\
(=' . '=)    (=' . '=)
(,,,_ ,,,)/   (,,,_ ,,,)/ Cats rule!

The difference between cats and dogs is that dogs come when called, whereas cats take a message and get back to you.

Yeia kai hara (health and happiness) to everyone!

Offline newt

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Re: Changes
« Reply #65 on: March 03, 2008, 11:08:24 am »
Aha, you live..good, very good  :) - matt
"The object is to be a well patient, not a good patient"

 


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