I’ve been having a few really bad pain days because I ran out of Vicodin this month. Not because I misuse it but because sometimes the pain is so bad that I get nauseated and can’t eat and 5mgs doesn’t make it better, so I have to take 2 of them. However, I am terrified to go to my doctor’s office and ask him to move me to 10mg Vicodin with all the opiate crisis stuff going on.
But I think with the 10s, I wouldn’t be sitting in my chair tonight considering taking yet another 1,000mgs of Tylenol because I would still have some left at the end of the month. I don’t know this for sure, but it sounds logical to me. Meaning my pain and I would be better served if I would be brave enough to ask for the higher dose… but I’m afraid they will stop prescribing them altogether and the Lyrica doesn’t take away all my pain, that’s not it’s job. It’s supposed to make the pain more bearable when I’m doing things like sitting in a chair working. The Vicodin is for when I have to go to the grocery store or take a shower or when Jude climbs up in my lap and wants me to read him a book or when I trip over a dog or a toy or a stair or kick the wall of the bathtub or have to stand for more than a few minutes or when the pain is so bad I can’t get up off the toilet by myself – which is humiliating, just FYI.
I have given up almost everything I love doing. I don’t play with my dogs. I don’t throw darts. I’m not helping with any charity events. I can’t stand long enough to pour melted wax into my Scentsy mold to send out samples of the December Scent of the month. I have trouble playing with Jude because at 16 months, he doesn’t understand “I’m fragile” and I don’t want to push him out of my lap like he’s a disobedient dog, pretty sure that damages a child’s psyche. I don’t go anywhere because I can’t drive. I don’t go on outing because I can’t stand or walk for very long, I mostly sit at home and think about…. I’m not sure I think anymore. I used to think about my books when I had nothing to do, but now, I don’t because most of the time the pain is too severe to make a coherent story in my head. Those rare moments when it isn’t and I’m not being forced to do something, I try to write.
My husband doesn’t want to build the shower I want because 1) he thinks it will lower the resale value of our house and 2) I’m not going to be able to help him build it. So I either need to write a whole bunch of books and make a lot of money to hire a contractor or… Or I don’t know. I can’t write books when the day’s activities, which included sitting in a chair and watching TV and going upstairs to fix me a sandwich, leaves me in so much pain I can’t think about anything else.
If I had even an inkling of a clue in July that this hip thing wasn’t temporary, I would not have put an offer in on a split foyer home that needed some back deck repairs, no matter how perfect I thought it was going to be for us.
However, tonight, I had a veggie sandwich with peppers and I didn’t get sick. For most people this wouldn’t be a big deal, but for me… it’s huge. I spent a whole lot of money on a gastroenterologist and scopes for him to tell me there was nothing wrong with my GI system. Since I started really reading about CRPS in October, after the doctor told me that was the problem, all my symptoms fit for CRPS with organ involvement. So, no, the Lyrica doesn’t make me 100% pain free, but it does give me the ability to get out of bed in the morning and the ability to eat things like bananas and apple pie and peppers…
Yet I feel bad because I still need the Vicodin and I’m terrified that I need it in a slightly stronger dose and even more terrified to ask for it. Damned if you do, damned if you don’t. The current social climate in which I need opiates to even remotely function like a human being is not conducive to making me function like a human being because it raises my anxiety. And I am terrified that they will end up banning all opiate prescriptions in the US before a better solution is found for people with CRPS, because I have residual pain every day, despite the Lyrica and when I talk to others with CRPS they say the same thing, they wake up every day and take whatever medication they are on to treat it and they still have a residual pain level that is around 15 or 20. According to the McGill Pain scale, our residual pain levels with treatment are still around the same as a fractured bone. Yet the only one funding research in CRPS is the NFL because it is a common neurological disorder experienced by football players and soccer players and hockey players… I guess I should be grateful that anyone is funding research since it is a rare neurological disorder.
As my husband and I continue to quietly disagree on the shower I want and need, it’s hard not to be angry and bitter sometimes.