Up until now, I have structured my medical care concerning EDS this way:
1. No more Physical Therapy. It was unsuccessful, sometimes injurious, expensive and frustrating.
2. No narcotics.
3. I will not give up booze.
4. I will not take any hypnotic sleep aids like Ambien.
5. I cannot change my sleep routine.
6. No pain medication. NSAIDS no longer work, my stomach is a mess because of them, and I’m not willing to be stupid on some drug and lose productivity.
7. I have sought counseling for grief, dealing with a chronic, degenerative illness and I’m sticking with that.
8. I won’t take weird, high level drugs that interact with my nerves or scary shit like that.
My back has been getting really, really bad. My hip joined in. My jaw slipped out two-three times the other day. My right thumb is no longer useful for picking things up in certain grips. I went to the doctor. I was feeling like crying all the time, getting up in the morning groggy and ashamed of the mental inventory of how much it took to put me to sleep; a whole bottle of wine? Plus Xanax and Benadryl? Shit, did I take the emergency Ativan, too? What am I doing? Liver, I am sorry, I really am. By nighttime, switching over to the other side of my dual brain; wine is better than something that might make me get up and eat the refrigerator or buy a car or cut my throat, maybe it’s not the Xanax making me feel weirdly anxious in the morning and like crying all the time, maybe it’s just having EDS, maybe it’s not the Xanax making me feel unfocused and not hungry, besides, I’ve got to do something to sleep through this pain because I’m not taking pain meds.
We met yesterday to go over the results of an MRI of my lower back. I still have a bad back, degeneration at L4 and L5, bulging disc. I brought the Medical Resource Guide put out by EDNF.org. I was particularly undone by this sentence in the guide: “…poor mental health frequently results from enduring constant physiological failures.” Cheerful, that. My PCP went over the Pain Management Brochure in detail.
Under managing chronic events:
1. Analgesics. We both reject opioids and narcartics for now. He voted muscle relaxant and wrote a script for Baclofen. I said I was afraid I’d be groggy. He asked me how much time I was giving up being stressed about being in pain plus just being in pain and maybe if I felt less pain I could adapt to groggy if I gave it a chance. OKAY GEEZ.
2. Physical Therapy. See above. Knee jerk. He said go for your back. You back is straightforward, there are things to do, it shouldn’t be like the other parts of you as much. I re-start PT on Tuesday, with immense resentment and trepidation, but I’ll try it. My back hurts, man.
3. Psychological Therapy. He looks at me. I say, “I am SO doing that, I am. Every Monday.” He asked if she was prescribing. No, I said, she thinks I should get some medical pot. So tied into 1 and 3, he is starting me on Cymbalta both for depression and because it is FDA approved for chronic pain.
4. Sleep Therapy. Good bye, Xanax. We both know it’s not really good for me. He argues that there is a lot of information that Ambien is safer. Fucking Ambien. I asked if I should read all the literature or just be ignorant. He shrugged. It’s not good to combine with booze, he pointed out, so stop taking the wine to bed with you. Don’t take it with the muscle relaxer, take one or the other.
Naturally, Walgreens managed to lose the script that I took them for the Baclofen, so I was only able to pick up the Cymbalta and the Ambien. I’m not sure how it is that I put an 8.5 x 11″ piece of paper in a vacuum tube and a guy took it out at Walgreens and now it’s lost, but there you go.
It required a dog in bed with me and strict planning to even go through with taking the Ambien, I am so afraid of it. I slept, but weirdly. I feel like I was fighting back all night, but I am also telling myself I just made a major changed by dropping out 2/3 of my alcohol consumption and the Xanax, which is how it’s been, well, for years with the booze and almost 6 months with the Xanax. So, I have to give it a chance. Two weeks. That’s what I’m going to try. It feels a little like going down the rabbit hole but I guess I can always climb back up if this doesn’t work. At this point, though, I feel like things are not working and I have to try something different. Sucking it up is too hard and costing me too much mentally and physically.
But I am completely freaked out about it. Can’t seem to overcome my brain’s position on that.