… But I’m going to make that a separate posting cuz I saw Fam Doc today.
Sooo… yea. Disappointment abounds, from Fam Doc’s point of view, on the whole Lyrica experiment. He asked how spiffy things were today and I told him, “To use a gamer’s terminology — Lyrica was EPIC FAIL.” He enjoyed that, immensely. ^_^
We talked about what I did with the Lyrica and he was surprised that I stuck with it as long as I did. As of today, Lyrica is out of my daily regimen and we’re going to let my body rid itself of whatever remains and try something that we know works — I’m upping my baseline H.Morph doseage. There’s no worry about my body being dependant on the Lyrica, so I can just pull it straight out of rotation and not be concerned of having any weird withdrawal side effects.
I don’t know if I’ve mentioned this in the last couple of weeks, but my pain has decided to come on earlier than usual (say, anywhere between 5-7pm as opposed to 9-10pm) and I’ve been regularly taking 20-24mg of The Moose a night. So we’re going to try and stay on top of the game by having me take 6mg H.Morph in the afternoon at like 2-3pm (circumstances permitting, obviously not when I’m out and about or have to do some driving) and continue taking the 12mg at bedtime. This will circumvent the whole going to bed stoned, then waking up in the morning just to Shake’n’Bake The Moose once again and ultimately be useless for the rest of the day.
This is the new “experiement”, so to speak. This way we’re getting any stray variables out of the picture and dealing with what we know works and we can find out if the Elavil/Lyrica totally messed with my body permanently or it’s the drugs themselves causing the last 2 months of constant medicating.
Interestingly enough, Fam Doc brought up the suggestion that once we get through this patch, he’s thinking that he wants to try me on the Cesamet. He seemed kinda stoked to try it, to be honest. I don’t know that “excited” is necessarily the right word, but I think after I brought up the topic of medicinal marijuana last month, it sounds like he thought a lot about that conversation and has some alternatives lined up for a “What if this doesn’t work, again? What’s the next step?” scenario, all fleshed out.
So, in two weeks time, I go back and we check-in to see how things have panned out. He doesn’t want me waiting a month this time before I see him next. If things have resolved themselves, FABULOUS. If not, I guess it’s time for the Cesamet…
It almost seems like everything else we talked about, this afternoon, was rather insignificant. I mean, it was important, but the whole pain management thing has been an absolute terror to have to get through the last two months and it’s been the only big, huge, thing on my mind.
I told him that I started walking!
He was super thrilled to hear about the last two days of walking without The Flutterbie Stick and hopes that I keep it up. I also mentioned to him the idea of joining a gym. Interestingly enough, he wasn’t that thrilled with the idea when I first mentioned it. His main question was, “What can you do in a gym that you can’t do at home?”
I explained the whole thought process behind the idea and he understood where I was coming from: Basically the last week or so I’ve been making friends with The Moose and I’ve had it in my head that I wanna join a gym. There’s one that just opened up behind us that’s open 24Hrs a day and I thought it would be brilliant to have a membership there because then, when I’m awake at 4am and I’m feeling ambitious, let’s say, then I could go there to work out and come home and go back to bed to sleep it off.
So the thought process goes.
But then I explained to him that perhaps that particular idea wasn’t the best solution.
Perhaps joining Curves would be a better idea because it only requires me to attend 3 sessions a week for 30 minutes. It’s a “regimented” activity that would GET ME OUT for 30 minutes, three times a week and I would be working towards getting my body into something resembling an able body. That was the whole thought process and after talking to Brit-SIL last week about her experiences with Curves and what she & BIL are currently doing (funny enough, they joined that gym behind us and quite enjoy it), I came to the “harsh reality” that I really can’t do a lot of things.
Let’s say, for argument’s sake, I stick with a program for 2-3 months or even optimistically 3-4 months, then something happens with SALLY. I’d be screwed. Or not even thinking as drastic as “SALLY rears her ugly head” — I get bored or unmotivated with what I’m doing. I’d still be screwed $$-wise. Once I explained that whole scenario about what I would like to do, but what the reality is once I’ve thought it through, he was okay with the idea. He’s willing to give me a medical letter stating what the issues are in hopes that it might get me some $$ back if I choose to go through with things and they fail miserably. So that was kind of cool to hear and keep at the back of my head. For now, with me walking around stick-free and having rethought things through, I’m actually just thrilled to be outside. The weird thing is that I walk with a limp, with or without the stick, but I think I mentioned that yesterday.
Oh! I gotta get my stupid Medic-Alert updated and I’d been meaning to ask him for months what/if I should change on my bracelet. After a lot of pondering, we decided that the only thing that’s gonna change is I have the HBP (high blood pressure) swapped out for PAH (pulmonary arterial hypertension) and leave the rest alone. So the new bracelet will read: panhypopituitarism, scleroderma, immunosuppressed, ILD/PAH and then have the lupus/mixed-connective tissue disease added on the wallet card because I’ve run out room to put it anywhere else.
The only other thing I mentioned to him was that my lungs make the weirdest noises at night. They kind of squeak + pop, but only after I’ve been horizontal for about 30 minutes. He double checked to see that all my PFT’s & other tests were okay and so once again, I’ve confounded him.