NeuroTalk Support Groups - I don't know if I can do it again

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- - I don't know if I can do it again (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/19672-dont.html)

I don't know if I can do it again

Well, my aids labwork came back from the Dr.'s office. The news is not good.

My viral load is up, and my T-cells are way down. This means that they want to start me back on aids meds... and I don't think I can do it again.

Aids meds can cause severe peripheral neuropathy, so of course an rsd patient is almost guaranteed to get PN. When you add that on to rsd, the pain becomes unbearable. I thought rsd was bad enough... but add these meds to it, and life becomes "not worth living". To top it all off, I get way too big a dose of the meds. They don't have "weight-based" dosages, Michael at 235 lbs gets the same meds I do at 90 lbs. That's basically triple the meds, triple the side effects. They won't allow you to cut pills in half, either.

I'm not even sure why I am telling you all this, to be honest. No one here understands or can do anything about it, of course. I'm just tired of doing this alone. Michael is the most wonderful man I have ever known, and he's here for me 100%.... but I can only whine to him so much. It hurts him too much to see me in that kind of pain, which makes me have to be that much stronger and quiet about it. I got aids from him, so he feels guilty, even though I don't hold him responsible...I already had rsd when we met. I knew what I was getting into with Michael, and it was MY decision to be with him. It's a choice I have never regretted... he has been worth it, to say the least. :D

I just don't think I can do it again, not even for him and my sons. They're all grown ups, and will survive without me. But if I have to start taking these meds again, there will be no "quality of life". I can see no point in being a pain-riddled lump, incapable of doing anything for myself, while dragging Michael down. I don't want my sons to see me like that, either. It's not just the pain... I might be able to deal with that if it weren't for all the other aids symptoms. But to be sitting on the toilet having diarrhea while holding a trash can under your mouth to throw up in, and in horrendous pain the whole time... well, I think you can see my point here.

I have had every pet I ever cared about put to sleep when the time was right. I felt I owed them that... do I owe myself anything less?

I am NOT going to off myself right now, rest assured. That is not something I would do on the spur of the moment, plus I have definate ideas where and how it will happen. Spokane isn't the place... there aren't any redwood trees, for starters.

But I really am almost out of options and the strength it would take to go through this again.

Thanks for being my sounding board, folks. Sometimes a person just needs to vent.

Oh, Rogue!! I really teared up reading your post!! I am so sorry to learn that the Dr. put you back on these pills. Rogue, is there any chance that your Dr. can give you a lower dose of the meds? Please don't "Do yourself in". Rogue, Michael would be lost without you. You mentioned in another thread that you found God. well, look what God let His only son Jesus do for us!! Rogue, my baby sister passed away and when my brother (Twin) heard the news, he hung himself on a low beam. don't do anything, It would be awful, think of the loved ones that will always think, why didn't I get a chance to say goodbye?? gosh, Please just let go and LET GOD be in control Rogue. Please see someone about how you feel.. PLEASE!! we are here to comfort, get ya through. No, I can't feel your intense pain, but Rogue, your God's child and God will decide in HIS time when it's time to take you home. don't let the enemy win!! what about nausea pills?? different meds?/ anything?/ Rogue, you are in my prayers, sweetie. Please keep all of us informed as to what your going through. It's ok for you to come here to vent, cry, to tell us what is going on. Let God and us help Rogue. Love, Desi:hug:

i'm so sorry. i'm crying for you, too. i don't know what to do other than pray.
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:grouphug:

Desi,

You didn't read it through to the end, did ya, lol?

Quote: I am NOT going to off myself right now, rest assured. That is not something I would do on the spur of the moment, plus I have definate ideas where and how it will happen. Spokane isn't the place... there aren't any redwood trees, for starters.

Thanks for being concerned, but I shall do nothing impulsive. My decision will be well-thought out, discussed with my family, and carried out in a dignified manner, when it happens.

May I Ask, Do You Feel It Is In Your Best Interest To Take The Medications That Make You So Sick? I Am Of The Belief That Each Of Us Can And Should Do What Is Best For Ourselves And No Doctor Can Tell Us Differently. If It Shortens Your Life, But Makes Your Life Of A Better Quality, Than You And You Alone, Should Make That Choice. So Many People Do 'what The Doctor Says' And I Disagree Strongly. Doctors Go By The Book [sometimes I Wonder What Book??], An Individual Goes By Their Own Emotional And Physical Self. You Also Start To Feel That The Doctor And The Illness Are In Control Of Your Life, And When You Feel You Have Gotten To That Point, Where The Illness Owns You And You No Longer Own It, Then You Get Discouraged To The Point Of Taking Your Own Life ... I Guess To Get The Control Back. So, Do What Is Right For You And Keep Sharing Your Burden. We Have All Had Those Thoughts. Joan

I wonder if a different doctor in a different place might adjust the aids meds? I guess I am thinking of Portland or Seattle? But I don't know if that is an option in your case.

Rogue -

As always, Jo's comments are right on the mark.

That said, were I in your shoes, there isn't a decision on your list I would not have made myself in the name of life and love. But then, I've always been partial to redwood rain forests, and have given explicit instructions that's where I want my ashes to go when the time comes. (Either that, or a wooden pire with lots of sandlewood oil on some hillside overlooking the Pacific, but that's not going to happen as long as the funeral industry has lobbyists in Sacramento.)

Mike

p.s. You and Michael are lucky to have found each other. But then you knew that already!

I really appreciate the support, it means a LOT.

JoanM, you are right on target! The whole "quality of Life" issue is my main concern. I am already close enough to that, as it is.... but add those pain-inducing aids meds, and it's just too much.

Jo, That's one of the biggest problems. There is NO way to adjust the dosages, no matter where I live. They only come in "one size fits all", which doesn't work for "all" regardless of what they say, lol. As a tiny woman, I have never been able to buy clothes that say that... so of course the meds are the same way.

fmichael, it's wonderful to see that someone else knows what I mean about the redwoods, lol... those are some mighty old, mighty wise trees, aren't they? And you never know... I might get there and the trees might tell me my decision is wrong, after all. ;)

And I assume you've tried massive doses of Neurontin and/or Lyrica for the PN. Correct?

p.s. Just saw your other thread at the bottom of this page, which sugests that you may not be as familiar with these drugs as I had thought. If that's the case, I would urge you to get acquainted with them in some detail, before you assume that there's no effective treatment for the PN that will work. Ditto re consideration of Marinol [synthetic THC] at a "suitably therapeutic dose" for both nausea and spasm control.

I just wanna let you know,you are in my thoughts and prayers.
You sound like such a strong woman!
I'm sure you probably don't feel so strong right now..but you sound that way to me!
Prayers for strength and making the right decision on the way for you.,
:grouphug:
Kell

Dear Rogue,

It does sound like you have been handed a really tough decision to make, and like Joan I would agree that quality of life comes first... but in the end, that is a really horribly hard decision you will have to make with you, and your family. Would things like IV immunoglobin help at all? It sucks that the dose cannot be adjusted and that it causes such horrible side effects.

I can't think of anything I can suggest which will help lighten the load you are going through or offer any useful answers, except whether a new form of pain control, such as Prialt, may be able to control the pain to a higher extent so that you can take the drugs? I don't know, just random suggestions I suppose. Anyway, there are days when you need to vent, we all have them, so go for it on here - at least we understand, to some small degree, what you are going through, even if we only understand the RSD.

It sounds like you were blessed to find Micheal and he sounds like a wonderful hubby/ partner (not sure which!)

Lots of love

Frogga xxxxxxxxxxxxxxx:hug:

Hi Their,

It is very nice to meet you, I also want you to know I care. I am just getting over a rough infection. So I can relate to the nausea and vomiting. It is just the pitts.

If I was you I would call at least 3 different Pharmacists and explain your situation with the HIV meds causing more nerve pain and other SX you have as well with them. Mike had some great suggestions on meds. but they might be able to come up with some more ideas as well.

I hope your day is full of love and joy. Big Hugs, Roz xxx

I appreciate all your kind comments and suggestions :)

fmichael, I am already on Marinol, 30 mgs p/day, per insurance orders (would be more, if dr.s got to do what they want to).They help quite a bit. I have to take my whole days supply at once to GET that effect, lol... but at least I can eat one great meal a day, and actually have a bit of fun at the same time. I use Boost to survive the rest of the time.

I have tried, and will NOT use again, Amitriptyline, Neurontin, Paxil and Tegretol. They screw with my serotonin levels way too much and I become rather psychotic. Everyone who knows me in "real life", lol, is amazed by what happens when I take them. They don't want to be around me, and I can't blame them... I don't like myself when I am on those meds either. :eek:

I guess I never explained the courses of treatment I have endured in the past 14 years. Back in those days, very few Dr.s had any idea what was wrong... quite a few still thought of rsd'ers as hypochondriacs.

I had ALL the blocks, every kind they could come up with. If I remember correctly, I had 16... four of each kind (I still have the toe twitch in my right big toe after 12 years, from the dr. hitting the sympathetic nerve ROOT.. dr. was impressed with himself, I was not.) I was one of the first to ever use Guanethidine, part of the gov't trial. I took the anti-convulsants, the anti-depressants, everything. As I am now an epileptic, I have to take 300 mg phenytoin every night.

I was sent to Texas Tech to see Dr. Gabor Racz, then considered the "leading expert"... he wanted to put in a spinal cord stimulator, but as I was paying for all my own treatment, that was impossible. He wanted to insert a morphine pump too, but I had two teenage sons to raise on my own, so I wouldn't allow it. (I'd do it in a heartbeat today, but medicaid won't pay for it or oxycontin unless you are a cancer patient. Yes, you all read that right. You can have them if you are dying of cancer, but you can't have them if you are dying of aids.)

Immunoglobulin therapy might help, I have no idea. But the side effects are too severe for the Dr.s to want to try them on me. The nausea and vomiting would be detrimental, to say the least. I weigh 90 lbs, and to lose even a few lbs from the side effects is a very bad idea.

So, basically, I am screwed. I have known that for a long time now, and am at peace with it. My relationship with God is a strong one, or I wouldn't be here today. I get my strength from Him and from Michael, who God gave to me in the first place lol.

My only quandary has been when and how it will all end. Long before I ever got injured or sick, it was well known to my family and friends that I firmly believe in euthanasia for people as well as animals. We don't make our pets die screaming in agony to the bitter end... why do we do that to the people we love? It's for selfish reasons, in my opinion. We don't want them to go, we want them here with us.

I know this thread has been a hard one for people to read... it's been rather hard to write, as well. But it IS a subject we should all think hard about. If, by reading and posting in this forum, even one person begins to understand that people DO have a right to end their own suffering at their own discretion, then I will know I have made a contribution to this world (other than raising my two wonderful sons, lol). There are too many people out there who are bitter and angry towards friends/relatives who made this choice, and it just isn't fair or right. Until you've walked a mile (ok, 100 yards for rsd patients) in their shoes, you just shouldn't judge.

Like I said in an earlier post, this is not something that will happen in the near future. You can't get rid of me that easily, lol! But when the time DOES come, I don't want you to think badly of me, either. We all have the right to decide when enough is enough.

Hi Their,

If your up for it you might want to have Mycoplasmas ruled out. Maybe it could help with some of the SX you have. Peace, Roz xxx

AIDS

The role of mycoplasmas in accelerating the progression of AIDS could not have begun under more baffling and circuitous conditions. A virus-like agent that arose through transfection of NIH 3T3 cells with DNA from Kaposi sarcoma tissues of AIDS patients was later shown to be M. fermentans. The spotted history of M. fermentans in rheumatoid arthritis and leukemia and its frequent contamination of cell cultures, along with its contemporary link to AIDS, have been considerable impediments to overcome in its elevation to pathogenic status. However, careful and convincing independent studies by several laboratories have implicated M. fermentans as a cause of systemic infections and organ failure in AIDS patients (4,74). The isolation of M. fermentans from blood and urine samples of HIV-infected persons, its detection by PCR and immunohistochemistry in multiple tissue sites at various stages of AIDS, and its ability to stimulate CD4+ lymphocytes and other immunomodulatory activities implicate this Mycoplasma species as a cofactor in AIDS. Consistent with this possibility, M. fermentans has been shown to act synergistically with HIV to enhance cytopathic effects on human CD4+ lymphocytes. Coincident with these studies, a new Mycoplasma species, Mycoplasma penetrans, also has emerged as a potential cofactor in AIDS progression (75,76). Its isolation almost exclusively from the urine of HIV-infected patients, the extraordinarily high prevalence of antibodies against this mycoplasma in HIV-infected patients and not in HIV-seronegative persons, and its capacity to invade target cells and activate the immune system of HIV-infected patients at various stages of disease correlate with a synergistic role with HIV. Other mycoplasmas, including M. genitalium and Mycoplasma pirum, have also been isolated from AIDS patients and implicated as potential cofactors. However, the proposed role of mycoplasmas as infectious agents and cofactors in AIDS-related disorders still remains a hypothesis without definitive proof. If cofactors of HIV are essential to the development of late stages of HIV-mediated disease, mycoplasmas possess all the prerequisite properties of the consummate helper. Their ability to establish covert or overt chronic and persistent infections with concomitant activation of the immune system, stimulation of cytokine production, and induction of oxidative stress correlate with increased HIV replication and disease progression. Are mycoplasmas irrelevant to AIDS, or are the clinical and microbiological correlations sufficient to imply intimate relationships between HIV and mycoplasmas, especially as the infected host undergoes immunologic distress?

http://www.cdc.gov/ncidod/eid/vol3no1/baseman.htm