Of course, Stoney! Especially just coming back to you all, and playing “catch up,” not only do I want to hear what’s been happening to you all, but sure I want to pick your brains for anything that might help me while in this limbo along my treatment or non-treatment path. Neither Jim or I have ever been “closeted” regarding our HIV status. Far more good than bad has come about for me (and him!) from HIV. (And I’m not being flippant about the virus overall. I don’t like to use the word “luck” for my experiences and I know some others still have horrendous experiences with their HIV.) I’ve been in some good places at good moments when drug trials took place. The Salk Vaccine began just a couple years into my diagnosis. I was treatment naïve which was one of the criteria. And I knew the name and reputation of Jonas Salk, researched the method behind his vaccine and it made complete sense to me. As far as I or medicine in general know, none of my infections have had anything to do with my HIV. I’m not, and have never been immunocompromised by it. My autoimmune system may be in overdrive, but my immune system side of it is beyond excellent. Again, I don’t take that for granted. For decades I’ve wished they’d come up with a way for me to give away CD4 and CD8 cells. I didn’t need to start antiretrovirals for a few years after my diagnosis. Even now, I’m on one of the less potent combinations we have. One doctor told me I have the immune system of an ox. (I have NO IDEA what an ox’s immune system is like, but I took it as a good thing! LOL!)
My glucose never once went low until after this recent hospitalization. Even at that, it was never in a critically low range. It was only low compared to where it had been for me. And far as high glucose levels, I can only say what my highest has been since actually taking my levels since diagnosis two years ago… but I once had a reading of 220. And I know EXACTLY what caused it. I had taken 10MGS of Prednisone 45 minutes before. So I drank a bunch water and moved around what little I could, and within an hour I was down within normal range. Most others I know with type II are up in the 300’s at least… some into the 400’s and 500’s. Most of them are on at least two diabetes meds and/or insulin. I’ve never been anywhere near needing insulin except after my Transsphenoidal Pituitary Adenomectomy in 1993. And that was only due to temporary Diabetes Insipidus immediately after pituitary surgery to remove my tumor. Since June, I only take a glucose reading maybe once every two or three weeks. I stopped Diabetes medication in June; no longer follow a strict Diabetic diet since June (except for things I came to love eating like brown rice and steamed seafood); and have gone back to drinking full-sugar Pepsi and Coke, it’s always high 80’s to low 90’s. It was the day I DIDN’T drink sugared sodas that I dipped into the 70’s. Again, nothing to be seriously concerned about at all, just that it’s not a level that I’m accustomed to.
And with Jim and Bleomycin, it’s one thing for a drug or biologic or any such substance to show deadly or damaging side effects. I KNEW the possibilities with Humira. Commercials all but spell out my specific side effects. But knowing that Lance Armstrong was warned 10 years prior to Jim being given it, that he’d experience exactly what Jim did… and that it’s contraindicated for immunocompromised patients… and that there is a prescreening test to measure a person’s sensitivity to Bleomycin that was not given to Jim… these are what piss me off. And even more so were his oncologist’s words and reaction to what it did to Jim the very next day when Jim went for his Neulasta injection: “Oh, you’re just one of those people who are sensitive to Bleomycin. No big deal. We don’t need it to cure your cancer anyway.” THAT’S the scariest part of it all. I was advised to pursue a lawsuit for wrongful death or something like that by another one of Jim’s and my mutual physicians. But honestly, Stoney, I knew I’d never get to dealing with my own grief and mourning if I went that route. Lawsuits such as that can go on and on and on. My own divorce/corporate lawsuit took 14 years to conclude. I know in my heart that even Jim wouldn’t want me to do that to myself. Yes, of course this was the most devastating and disastrous of medical SNAFU’s that Jim and I suffered from. But it’s not the only one.
Rest assured I’m not going to bathe in Diclofenac! And I don’t know if different pharmaceutical companies are permitted to vary their formulations of it. I assume they can just as any generic tablets, capsules or powdered medications can vary “non-active ingredients.” Or, if there’s a certain concentration that is permitted without needing to be listed on the label (just as some levels of insects, rodent hairs, and animal feces are permitted in boxes of cereal!) But looking at the ingredients on this bottle of Diclofenac, I see only: alcohol (11.79%), dimethyl sulfoxide, USP, glycerin, propylene glycol and purified water. (And I’m honestly not being a smart ass. I realize there are some things I may not know added to this stuff. I do know that Aspercreme Arthritis Gel as well as other generic diclofenac gels contains Diclofenac but at a 1% concentration, compared to my 1.5% prescription strength.
I’ve tried CBD oil. And I gave it a few months chance. My pain management specialist who’s also the head of anesthesiology at the hospital from which I was just discharged wanted to me to try it. And he claims that the one that he uses is from one particular pharmaceutical manufacturer lab tested for consistency and potency. I wish it had done at least something for me. He has done two versions of nerve blocks into my spine that did give amazing relief almost immediately, albeit temporary, meaning two days of relief. Of course they only affected from my lower back downwards. They’re actually required steps by insurance coverage to verify whether or not a patient achieves a certain percentage of success from them. IF these accomplish I believe 60 or 80% relief, then a patient is eligible for a Rhizotomy. I had at beyond the percentage of success they’re looking for. The only reason I did not go for my Rhizotomy at that time was my total distrust of that insurance provider! I’ve since switched providers an feel much more confident that I won’t see a an invoice for thousands of dollars months after the procedure. I will be going for that procedure ASAP.
Two weeks ago I saw my rheumatologist sooner than I had been scheduled for. Since no longer doing Humira, and on nothing actually treat my PsA, pain is going to such increased levels and expanding beyond areas I had been feeling it. My neck, shoulder blades and out to shoulders are the worst of it. I can’t find positions for sleep, I have far less range of motion turning my head. One night I was in so much pain there especially, that I went searching regarding steroid injections in those areas. I’ve figured if it’s all going to get worse, at least let me minimize my pain as PsA progresses. Whether she’d do them for me or if she preferred I see my pain management specialist for them. I’d do whatever she said, I just needed to have her blessing for it. (In the same way, I always seek my Infectious Disease doctor’s blessing for anything going into my body. She too wants to KNOW that anything she prescribes has his blessing also.) She totally went with me on my request, Said she could pinpoint my trigger spots and so she did!! Two injections just below my neck, between my shoulder blades. This had to be the magic elixir of the gods and godesses! It was just nice walking out of her office knowing she did something to try. A few hours later I KNOW it’s working. By bedtime my pillow felt like a cloud and my head was finally able to sink into a position that I don’t remember anything else 'til morning, waking up from most amazing sleep I can ever remember! And it just kept getting better. Levelled off in about two days and stayed at that level another 2 or 3 days, and now has faded some, but it’s still better than it had been!!
As far as doctors and faith in them goes, Jim and I shared another trait. (And lest it sounds as if he and I agreed on EVRYTHING, no! LOL! But in this we did!) We don’t suffer fools lightly. We’ve seen medical idiots… one appointment at most. I’ve walked out on a rheumatologist and his PA. They didn’t last 20 minutes. We’ve both fired nurses who were tending each other in hospitals. He’d show them his power of attorney me, or I’d show mine for him. When an ER doctor accused me of starving my husband because “his temples didn’t get this sunken overnight” they found another ER doctor quickly. This is why we have filters. Sometimes a few coffee grinds get through. But they float to the top and you just take them out then.