2nd Tui Na Massage

I drove out to the little small town nearby for my second Tui Na Massage appointment this morning. It was different from the first in that a) I was fine to wear soft, not-long-sleeved or -panted (is that even a word?) clothing, b) we only went over what was currently painful c) it was only one hour, and d) I did not need to rest afterwards.

We spent some time talking about the things I learned this week. The practitioner was glad to hear that I had learned about how my posture/habits/etc. affected my pain levels. She said that some people don’t take time to notice those things and those are the people that she sees repeatedly for “little issues that have become big.” I told her that I consider myself a life-long learner and that that applied not just to my mental education, but to my physical one as well. ūüôā

She went to work on my right foot, which I’d stubbed a few days ago, finished up on my right hip, and re-worked my left spine in the spot that always pops out. Then she told me something that she said she’d felt to compelled to tell a lot of people lately (and may as well tell me): people really need to work on being good at being adults. I laughed, as she had just gotten off an “emergency” phone call from her son wherein she had to give him directions somewhere three different ways before he understood her. Anyhow, the gist of it was this: watch your posture, eat food that makes you feel good (not just full), and wear good shoes. I’m am totally guilty of at least two of those. *sitting up straighter & searching for better shoes & tossing out all the super-crunchy food now* Ah-hem.

At the end of the appointment, she asked me if I still thought I had RA. I told her that while she had, in fact, made me feel better than I had in years, I wasn’t willing to go quite that far. I still am having my morning stiffness (which she said “everyone has that, it’s part of being older”) and I am still low grade feverish, as I am when I am flaring or overworked. She told me that a lot of people with migraines have low grade fevers and that I had one each time I’d been to see her so far (which was true; I’ve been very migraine triggered lately). I will have to look for more information on that because I’ve never had a regular doctor make that particular connection before.

In any case, I’m back to feeling better now. I didn’t have to lie down after this appointment and I don’t have to do the warm clothes & soup thing this time either. I just went to my new favorite bookstore and am back home again. ūüôā

Tui Na

I had a form of Chinese massage today to help with my RA. Oddly enough, my massage therapist doesn’t believe that RA is a real thing. She told me that I had basically dislocated most of my joints and set to work putting them back into place. For the most part, I’m feeling pretty good now. Range of motion in my neck, shoulders, and hips is better than it’s been in years. A few places still aren’t up to snuff. One place actively hurts like h*ll. In any case, I get to spend the next three days in pj’s and eating soup. Then, I go back next week to try to finish up the stuff that wasn’t done today..

mental health

I am starting to think that what I really need is a mental health blog.  Or to combine all my little blogs into one big blog so I can stop repeating myself from different angles.  Who knows.

A friend of mine committed suicide this weekend. ¬†We weren’t close lately, hadn’t been for a couple years, but once upon a time I lent her all my books about depression and gave her my number and talked to her about my experiences with therapy and brain chemicals that just don’t work right . Through her, I lent her husband the book “How to Help When Someone You Love is Depressed” that I’d gotten for my husband ages ago. ¬†She still had a few books that hadn’t made it back to me. ¬†I guess they never will. ¬†These aren’t the thoughts one generally shares, I know, but somehow they are the ones my brain is holding onto right now, instead of blubbering insanely about how sad it all is and how hard I tried to help her and how I failed to keep up and how I regret it and how I am never ever the person I mean to be when it comes to other people and how I should have kept up with her when she went silent. ¬†Because once I get started with them, the tears start, they don’t stop.

THIS YEAR. ¬†I CAN’T TAKE THIS YEAR.

One of my good friends from junior high died this last year: breast cancer. ¬†My ex-boyfriend from high school was accused of sexual misconduct with a student and I can’t quite bring myself to admit that I really do think it’s something he did, because then I’d have to admit out loud to my family and other people how awful he was (in college I had girls email me out of nowhere and ask me to join their therapy group because ….) and they don’t need to hear that. ¬†Then there was my mom and the hospital last summer. And another ancient friend’s husband died unexpectedly from pneumonia. ¬†Another one’s brother died and I somehow totally missed it and I feel awful about it, but don’t know what to say now. ¬†Another friends son had a terrible car accident months ago and is only now walking. ¬†And then the husband of a girl here in town that was one of those friends-of-a-friend that you always hear about that you feel like you know even though you’ve actually never met them? ¬†The one you’ve heard dozens of stories about? ¬†Yeah. ¬†Her husband died trying to save someone after a car accident. And now this.

 

I told my spouse that I needed a Self Care day. ¬†He was busy, of course, because we are NEVER not busy these days, and said the wrong thing and that made me cry more. ¬†He apologized and said the right things later but I ….well… ¬†I am broken at this point. ¬†And thanking God or the Universe or Whatever I’m Believing In This Week that I asked the doctor for those anti-depressant, anti-anxiety meds way back in October. ¬†Because I don’t know what or who to believe in these days, but SCIENCE seems like a good thing. ¬†Quantifiable, you know. ¬†I don’t, I just don’t know. ¬†Nobody is available on a Saturday to talk, so I’ve been making due with a bunch of movies (The Decoy Bride I need to own and Wild Targets I’m going to rewatch and A Good Woman I’m in the middle of, but it’s kind of bland so far despite good reviews – I’m thinking I just don’t like Scarlet Johanssen) and a bottle of wine and a box of chicken quesadillas.

 

Thank you for listening and thinking about me. ¬†I know we don’t know each other in person, but you mean the world to me, you really do. *big big hugs*

 

Infusions…oh the joy

IMG_2696

Me in the infusion chair at my doctor’s office. I totally forgot to bring any entertainment today and had to rely on the elderly magazines, as my phone died after this picture was taken. So sad. ūüėČ

I had another infusion of Orencia today. ¬†I was really excited to see my old infusion nurse there. I asked about the old-new infusion nurse, if she was taking vacation days, but she is GONE, which mightily made me happy. ¬†Apparently other people had complained about her. ¬†I hadn’t, as I hadn’t wanted to seem whiny, but the truth of it was that she was not careful with me and she insisted trying veins that I knew and told her would not work for me. *sigh* ¬†So the old infusion nurse is back. ¬†YAY!

Unfortunately my best vein is no longer my best vein. ¬†Something happened to it while she was off working in x-ray land and now it has a kink in it. ¬†It could ease out or I could be left without this happy vein as an option. ¬†Who knows. ¬†I’d like it to repair itself. ¬†Having the infusion in my other arm impedes my ability to get things done during my infusion, like writing, and I’m really trying hard to get back in the habit of daily writing again.

Anyway, I talked to my doctor about the flushing and heat issues I’m having. ¬†He hadn’t heard of anything like that, but the nurse later told me that she hears that complaint all the time from other patients, so now I’m a bit confused. ¬†Has anyone else heard of this? ¬†I’m pretty much constantly feeling overheated and I work up a sweat quite easily. ¬†I can’t find anything on the internet on my searches, but maybe y’all have heard something?

I see my primary care physician next week for my usual round of bloodwork and stuff. ¬†I’m going to ask him about it and also about how to lose weight. ¬†It seems like every time I hit the gym I end up with an infection or complication of some sort, so I’m going to ask for his advice on what to do. ¬†It would really ease my pain to weigh less, but I’m going to need some help.

Rheumatologist appointment

After I spent yesterday perusing the¬†blog carnival about pain scales, I came to the conclusion that a) my pain level, regardless of scale, is usually only about 2 or 3 in a few joints, with occasional forays into 4s and 5s when I’m in a flare. ¬†So when¬†I had my 6 month check-in with the rheumatologist today, I decided that instead of asking for the next big gun treatment, I was going to ask for another stop-gap measure, something I’d read about on other people’s blogs that had never been offered to me: a pain relieving, anti-inflammatory gel.

 

I didn’t start off with that, of course. ¬†I told him about my last few months, about how I only flare when I’ve got big things going on (of the stressful variety. ie. Thanksgiving or Christmas) or I do something exceptionally stupid (moving furniture, driving long distances, trying to do all the Christmas crafting in one week, etc.). ¬†I told him about my prednisone tapers and how they’d helped. ¬†I told him about my in-between days when I’m feeling all right and the days that I can barely move my fingers and I’m not fine. ¬†He told me my next option was the IV drugs and physical therapy. ¬†I said “No, thank you” and then mentioned the gel. ¬†He said the only reason they hadn’t offered it was that it doesn’t always work and that it was kind of expensive. ¬†“More expensive than IV drugs and physical therapy?” ¬†No, not at all.

 

And so that’s what I’m doing. ¬†More prednisone when I’m flaring (with a phone call in to the office to let them know), anti-inflammatory gel for the in between pain, working on my PT at home from my PT Folder o’ Goodness, and follow up in 6 months.

New season, new aches?

As the season has been turning cooler, I’ve noticed new aches and pains that weren’t around in the summer months.¬† I’ve started carrying my seat-back-cushion into places that I’ll be sitting for long periods of time (anything over half an hour really).¬† I’ve noticed that the one I use around the house, which I got over the summer (at the dollar store, of all places) and was tremendously nice then, isn’t as nice now that it is cooler out because it has vents that let cool air through.¬† The one I use in the car is more like a fitted pillow and now that it’s cooler out I’ve been noticing how nice and warming it feels when I lean against it.¬† That’s the one I take in places anyways.¬† I was worried when I first started doing it that people would look at me funny or make comments, but the only thing that’s happened is that the pastor’s wife is now bringing in her own back support and a stool for her feet (genius!¬† I’m bringing mine next time!).¬† I haven’t yet asked what’s going on with her, but I know she has some kind of pain condition and I’d like to reach out to her, but I’m not sure how much reaching out to do, exactly (this is our new pastor & wife; we don’t know them well yet).

I’ve also noticed issues sitting at the piano.¬† It’s not just my fingers, wrists, and hands that hurt.¬† It’s also my shoulders, spine, hips, and even my feet.¬† Oddly it leaves my knees alone.¬† I’ll take that bit of goodness!¬† ūüôā¬† The funny thing, to me at least, is that I remember this pain.¬† I remember it as part of my burn-out process.¬† It just started hurting so much to sit there and play.¬† But I’m not giving up this time.¬† I know now that the pain isn’t just going to go away on it’s own, that it is as much a part of the process of everything that I do, and that I can’ t let it take the joy away with it.¬† So I’m practicing more often in shorter shifts and that seems to help.¬† Plus it fits in great with my schedule!¬† Oh look, I have 10 minutes before we have to go, I can practice!¬† ūüôā¬† Also, my fabulous husband got me a heated back massager, the kind that straps into a chair and does rolling & shiatsu style massages.¬† It has been a thing of wonderment.¬† It works best in a plain wooden chair, but I’ve given up on that plan, as I don’t have one to spare and it’s not easy to move around.¬† So it sits in my bedroom reading chair for now just waiting for the next time I need it (which some days is 3x a day and sometimes only once).¬† It is so very lovely.

In other news, I wore sandals yesterday after the cold front went through and woke up to my feet feeling like there were shards of glass in them before I even got out of bed this morning.¬† So I finally dug out all my cold weather shoes.¬† I also have been stocking up on comfy house socks, since I have a general dislike of shoes, but my feet get too cold in the winter without them.¬† I have blue polka dotted ones and white-purple-pink polka dotted ones and once I fix the one sock, I also have black ones with little dangling cherries.¬† I’ve also had a kid (guess which one!) volunteer to do my toe nail polish for me, since that seems to be harder than usual lately.

Well that’s about it for today.¬† I hope that all those writing prompts my brain came up with yesterday come back to me today so I can write them down.¬† ūüôā

This post was written as part of NHBPM ‚Äď 30 health posts in 30 days: http://bit.ly/vU0g9J

Water as therapy

I¬†am a pool person– I spent¬†nearly every day from March til October¬† in the pool from the time I was 6¬†until I turned¬†22.¬†¬†¬†Then we moved away from home and although we had access to a pool, it wasn’t a lap pool, more one of those artistic looking things that really didn’t encourage swimming.¬† The town we moved to after that (our current one) doesn’t have a decent public pool.¬† We have a few college pools that require you to be a student to use them and several private membership pools, but nothing for the general public that doesn’t want to spend $600-$1200 a year on swim club fees.¬† So outside of swimming lessons for the kids, we haven’t swam at all for the last 7 years.¬†

So today I went in for my first day of Aqua Therapy.¬† I was so excited to get to go in the water all alone, no kids dragging on me at all.¬† I got there early, showered, was all ready.¬† (Note to self: you need flip flops and you don’t need a towel and bring a flatter bag next time!)¬† The instructor was there and there were more than 30 elderly people in the pool already.¬† I was the youngest person there, excepting the intern.¬† I got in the water chest deep, and started walking as instructed.¬† Boy, was it hard.¬† I hadn’t expected that.¬† After a while the instructor told me to walk sideways, which was even harder.¬† My hip started hurting, then my knees, the the tops of my feet near my ankles.¬† I finally whispered to the lady across from me if it was supposed to feel this way and she told me to talk to my therapist, who when I finally got back over there told me that my time was up on that exercise anyway.¬†

Next up was low marching, which was not a problem, and then a goose-march step, which wasn’t much more difficult.¬† Squats were so far from not bad that I was shocked.¬† Squats outside the pool are not possible for me at all, but in the pool, it was just up-down-up-down (this is not to say that there wasn’t any knee or hip clicking or popping- there was – but it didn’t hurt).¬†

After all that I made my way to the deep end with some arm floaties and made v’s with my legs – open -close – open out to my left and right sides.¬† The instructor thought that would hurt, but it wasn’t too bad. Then out and back front and back.¬†That one¬†nearly had me crying.¬† It hurt so much.¬† I stopped early on that one.¬† Then I got to¬†bicycle my legs, which started off easy and ended up with me¬†feeling very tired.

Then I was done.  I got a sheet of things to work on once the pool at my gym opens and I went to get out of the pool.  I felt pretty good walking to the stairs, but with each one I climbed, gravity reasserted its pull on my limbs and I felt heavier and heavier.  By the time I got to the top I was so heavy and sore that I could barely walk to the locker room.  By the time I got to the door I was crying, not just from the pain, but from the shock of the weight of the world.  I had forgotten how heavy real life feels. 

In the locker room I talked to one of the other ladies that had been in therapy with me.¬† She told me how she usually schedules an extra hour into her daily plan for therapy days, as she can’t get straight out of the pool & straight back into clothes right away and how she has to rest for another hour after that and to plan to¬†have convenience foods for lunch or¬†pick something up.¬† That it hasn’t really gotten any easier for her, even though she feels like the therapy is helping her in regular life.¬† I thanked her for her advice because this is the kind of stuff that the doctor never manages to remember to tell you.

I made my way in to shower, but¬†ended up just rinsing off, as I couldn’t really raise my arms or my legs.¬† It was so demoralizing.¬† I finally got into my clothes and got out to the parking lot, limping all the way.¬† The lady that watched my youngest child while I was out was nice enough to feed¬†us lunch when she saw how exhausted I was and then I had to go pick up my middle child, who was throwing up in his kindergarten classroom.¬† We’ve spent the afternoon resting and watching TV/surfing the internet. Even four hours later I’m still limping through the house.¬† My ankles and knees and hips hurt from all the activity.¬† My shoulders hurt from the strain of holding my body up on the floaties.

I hope this is worth it.  It is, right?  Everyone else thinks it helps?