celeste_noelani: (Default)
When I went in for my one year post-op, my neurosurgeon finally got fed up enough with my whining to refer me to the UW Pain Clinic. My appointment was today and I'm glad I didn't listen to the little voice that told me the appointment would be useless so I should just cancel. The appointment was the opposite of useless and I am finally feeling some kind of hope about actual pain management in my future. The doctor was extremely frank, saying that while her clinic would never be able to completely resolve my pain symptoms due to my condition, the focus will be on getting me back to writing, since that is my main concern what with the nerve pain in my thumb and all.

She was extremely concerned about my posture and the overall tightness of my muscles. I am supposed to go back in about three weeks for some trigger point injections, and will be getting more referrals to other types of treatment. In the meantime, she said to really work on getting my shoulders back and down since I guess I am trying to touch them to my nose or something. Just pressing my shoulders back into my chair here and trying to get my shoulder blades together has already proven helpful with the typing. I can feel the nerve pain in my thumb, but it's not nearly as bad as usual. I'm not having to ignore or disassociate in order to get my thoughts down. So, that's huge.

In the beginning of my appointment she said that she was reading all the notes from my other doctors and said that I'm "famous" in my chart. What a weird thing to say, right? At first I assumed it was just filled with a thousand different ways for doctors to call me a hypochondriac, but maybe it's just because I have this super weird condition. 

Also, she said I got "all the points" indicating PTSD on their pain tracker app. It totally caught me off guard because while yes to the PTSD stuff, I wasn't expecting it to be brought up quite so...easily? Offhandedly? I dunno. Anyway, she was interested in those results as well since trauma will definitely affect the way we treat my pain. 

In any case, I'm super hopeful. Like, super hopeful. I liked the clinic a lot, it's easy for me to get to even on the bus, and they are part of UW, which means they're connected to all my other doctors. There is also a chronic pain support group run by the clinic social worker, and I'm thinking about checking it out at least once. 

We'll see what happens.


celeste_noelani: (Default)
Today is my lax day, when I don't have any appointments or classes and I am left to my own devices for a few solid hours. The rest of this week is especially busy so I'm trying to make it count. It still feels goofy to say things like that since when I actually look at my calendar so much of my schedule seems leisurely. 

Tomorrow I walk Greenlake with a friend, then I have a float tank session, then I have Physical Therapy. Of all of those, only PT sounds like a "real" appointment, but the other two are actually part of managing my condition so if I skip them, PT is extra garbage. Ex-traaaaaaa.

Wednesday is hula, which is two hours since I go early for extra help and the one hour class always runs long. Two hours of hula is tough, you guys. The instructor may call a Ki'i Wawae an "enter" (wtf) but she still makes you do them. I leave straight from there to pick up Iliana since every Wednesday is early dismissal. Every Wednesday. (Also wtf) Wednesday evenings I go to Aqua Fit with my sister and we sweat in a pool with other hobbling women who are doing our darndest to maintain functional fitness. 

Thursday is acupuncture and therapy which is plenty after the bigness of Wednesday. I used to walk Greenlake on Thursdays, too, and I need to start that back up again but I haven't been able to make it work for a few months.

Friday is another lax day so I added a float tank session. It is literally relaxing and all, but it's still an appointment to remember. And then this week I have a haircut (finally!) plus an appointment at the UW Pain Clinic, which I'm skeptical about. I'll report back on that next week or whatever.

Between all that I try to practice my hula every day (except Wednesdays omg) for an hour. Or, well, I was doing an hour before my surgery and I'm trying to build back up to that but I haven't broken the twenty minute mark yet. I also try to do at least some of my PT exercises. I was doing an hour of PT a day but since I picked up the hula I've all but dropped that. I need to pick that up again because otherwise, wtf is the point of PT. 

I need to start getting massages regularly, which sounds lovely in my head, but is actually kind of a nightmare. The schwannomatosis makes my muscles so tight all the time so I need those massages where they basically beat you and you wait for the sweet release of death, and then maybe three days later you feel better. And there are so many raw nerve spots on my body so when a massage therapist digs in there...well. It's not relaxing that's for sure. 

Anyway. 

I am so consumed by managing my pain that there is little time for anything else. I mean, sure, I'm still doing familial responsibility shit, but I can't do most chores for very long before my hand turns murderous. I do what I can every day, but of course it's not a lot. So mostly I vacuum the spot where I'm going to do hula or whatever, and ignore everything else. It's one way to approach this, I guess.

I felt like I could do more in Hawai'i, but of course that's not true. We had housekeeping come every day which made the living situation seem far less bleak. Less disabled and dirty. I mean, I did do a lot in Hawai'i, but I didn't have to come home to a totally neglected house after it all so I felt lighter, Well, that and the joy of being with my family. Plus the copious amounts of vitamin D my body has had to do without for these past decades. That all helped. And now, back to none of that. 

Okay I'm going to practice my hula now. Tell me what's going on with you.
celeste_noelani: (Default)
Added my second (morning) dose of gabapentin today. I started on one nighttime dose on Monday and that seemed helpful with the nerve pain in my hand, though the grogginess was definitely a force to be reckoned with. I try to go to Summer's house on Fridays so we can do our physical therapy exercises together (solidarity in suffering!) but I am staying put today. Driving is a no-go with this brain fog, and I don't feel like waiting at the bus stop in this rain. At least, I'm letting the rain be my excuse for today.

I had some acupuncture done yesterday. It was fine, but I'm not sure the practitioner was the right fit for me. I'm going to give her a few more tries to make sure, though. My insurance covers sixteen visits a year so I figure I can see four different people four times each in hopes of finding the just right person to stab me all over my body. Pain management is so weird sometimes.



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