[theoneRogue420]

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.

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.

[Desi]

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

[unrouley1]

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

[theoneRogue420]

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.

[JOAN_M]

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

[Jomar]

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.

[fmichael]

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!

[theoneRogue420]

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.

[fmichael]

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.

[fmichael]

Just because.