Let's complain about treatments, shall we? I'm so tired of them—the endless medications, PT appointments that take a large chunk out of my working day, and my new less-than-awesome TENS unit.
TENS is weird. At first I raved about it, profusely thanking my dad for sending me his unit and believing it would be life-changing. Now I'm not so sure. I think it does have some effect, but I think the initial high from it was actually a result of a good myofascial releasing PT session. Not that my dad still doesn't deserve thanks.
There are four sticky pads with electrodes that I put on my lower abdomen. Wires connect these to the unit. Long wires; part of what makes it unwieldy. The unit itself can clip to your belt and looks kinda like a pager circa 1995, if pagers then were huge and tan-colored. It's quite a bit larger than a cell phone.
I can use the unit at work or when I'm out and about at other places, but people definitely see it. At first I wore long cardigans that kinda covered it, but made me look like my right hip had a box-shaped tumor. Now I'm saying "screw it" and not bothering to cover it up, but it feels awkward. I'm not really sure yet how I'll answer questions about it.
TENS feels like an almost pleasant buzzy sensation. There are various settings, and my sweet spot is between an amplitude of 2 or 3 (out of 8). If I accidentally hit 3, I feel like my pelvis is being electrocuted and I think I've seen the muscles actually jump. Not keen on repeating this for fun. If it's at 2, I seem to get no therapeutic benefit. Has to be riiiiight at 3.78 or whatever and my OCDness makes me constantly adjust it. Doesn't help that the muscles get used to a setting and then require a higher one.
In addition to looking like I'm a 90's era drug dealer who's checking pages constantly, I sometimes flash people my electrodes. I'm pretty sure the cashier at the grocery store today saw a sticky pad in the process of falling off. The damn things will not stay on unless I tape them with medical tape. The adhesive on the medical tape makes me welt up and itch; as of 5 years ago, I'm allergic to anything resembling a Band-Aid.
Moving on to meds. I sooo wish I could stop taking all of them, just taper off and not look back. Go to acupuncture and massage and hot stone treatments once a day (each) and meditate the rest of the day. Unfortunately, that's not my life. I have a desk job and sitting compresses some key nerves, make my nerve issues worse. I'm finding ways to work around it, but avoiding sitting entirely hasn't cured me, either. If I could find SOMETHING, some magic fix that did not involve 4 hours of PT/day, I would do it.
In the meantime, I take meds. I've decided I'm really tired of Lyrica. We increased my dose recently because I think it does help the pain, but I'm so sleepy now. All. the. time. With my doctor's blessing, I tried going back down to my previous dose over the weekend, but my pain flared and I decided I'd have to cope with sleepiness on the higher dose.
I've been having horrible headaches lately. I've never been a headachey kind of person; never had a migraine (knock on wood—I know I'm very lucky), really only have headaches when I'm coming off caffeine. My theory about the recent headaches is that the neuropathic pain has made its way to my brain and is eating it from the inside out. Or possibly something less dramatic. I've been having less neuropathic pelvic pain, but the neuropathic stuff has been making its way up my torso for some time now, giving me an aching burning sensation in the middle of my body. And after the core pain started, my headaches started. So the pelvic disease is spreading.
It is indeed really weird how pelvic pain can leech out and invade YOUR ENTIRE BODY. I'm capping because it is really freaking dramatic how horrible it can make your life. And when I treat the pelvic pain by putting TENS electrodes on my abdomen, I can often make my headache go away. So freaky.
I've written a lot of posts in my head lately that haven't made it here, and one is about body image. Of course, mine took a big hit with having the low-functioning ovaries of someone 5 years older than I, a ute with multiple issues, and endo that invaded my abdomen. Now I also have to hate my pelvic floor muscles, which were body parts I'd never thought about before this. Yay.
As I read back over this post, written earlier in the afternoon, I'm amazed I was able to have any kind of sense of humor in it. It's been a rough day. I'm gonna have my husband drive me to work for a couple of days because driving is hard. It's hard to concentrate when you're in pain, when Lyrica is making you tired, and sitting up is an issue. At least I tilt my seat back if my husband drives me.
I think what's scaring me so much right now is the prospect of another flare. It's reminiscent of my fear in the years following my first episode of severe depression. Every sad mood, every PMS moment, every break-up, was cause for alarm that another severe depressive episode was starting. These days, a few bad pain days in a row freaks me out. I can't do the flare thing anymore. What if it starts, how will I cope with more missed work, how long will it last, how much will it put everything else in my life on hold, like adoption...
I've started meditating daily again. I'm proud that I found room for it in my schedule; it's nice to be back to it. Also, the guilt from not doing it was intense. I'm putting a lot of pressure on myself to meditate the pain away, or do enough of some alternative treatment that will make everything ok. I feel addicted to TENS (which in itself isn't a huge problem, as long as you take breaks periodically), I feel slightly panicked that I don't see my PT again until Friday...everything is worse now, too, because I haven't been sleeping well. Working with my psychiatrist to get that worked out.
Another thing to feel guilty about: we still haven't finished the DVD from the adoption agency we're interested in. I just haven't had the energy, or I've had too much energy; when I've felt good since my last flare, I just wanted to be doing fun or immediately productive things. Adoption is daunting. I think my goal for this week, knowing that we're meeting with our adoption resource couple this Sat, is to let myself off the hook for watching this DVD. I just need to make it through the week and it will be fine if we don't watch the DVD.
In less depressing news, Homeland is amazing and highly addictive. Will temporarily take the place of Breaking Bad until the new BB season comes out on DVD. Saw The Hunger Games for the third time on Friday, which was maybe two viewings more than I needed to see this year. Love it but not three times/year love it. Our DVR hates us and has not been recording Project Runway recently. Dislike.
Ok, signing off!