icepixie | Entries tagged with ankylosing spondylitis

I'd say I knew Tumblr would fail and that's why I never moved there, but really it was that I didn't want to learn a new platform (especially one you couldn't easily have conversations on). Also I was pretty much in fandoms of one at the time everyone moved over there (and from that moved on into no fandoms at all), so there wasn't much incentive to follow.

Anyway, welcome back, everyone. Please stick around; it's nice having more of a flist to read again.

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I'm on month five of Cosentyx. It's been...interesting. I think ultimately it helps the pain about as much as Enbrel, but it's distributed differently (likely because it's a once a month shot instead of once a week). Enbrel was pretty much the same level all the time. This one, it's like week one: I feel AWESOME (to the point where last month it convinced me I could do a huge Christmas shopping trip and then clean house later that day, leaving me with a week of costochondritis, blarg); week 2: I feel good to excellent; week three: I feel okay; and week four: UGH LET ME DIE.

But on the unequivocally good side, I ended the month with several doses of Tramadol left over, which hasn't happened in a long time. (And I will promptly use them up with this week's dental implant implantation, but oh well.)

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I gave up on the revised SP-Teri boots, as my toes and feet never stopped going numb. My last attempt is Avanta, which is run by someone with a history of making orthopedic shoes and skates. If they don't work, I've been offered a full refund. I had casts made of my feet this weekend for them to work from, as Avanta is out in California and I am not, and I should have boots in about six weeks. (Normally it's four weeks, but after seeing photos, the bootmaker pronounced my feet "very, very unique" and said it would take some time to make the boots the way I need.) There was some talk of not having laces but rather straps, or having minimal lacing plus straps, so I can avoid having something press down on the parts of my instep that appear to house the nerve that feeds my toes. Not sure what's going to happen there.

Hopefully one day I'll skate again. I admit it's been nice not getting up early to skate before work, but that's been the only upside.

Crossposts: https://icepixie.livejournal.com/1047041.html

I start round five of physical therapy in a week and a half.

I'm trying to look on the bright side--this is mechanical, not yet another manifestation of arthritis, and thus might be fixable. The official diagnosis is "hip abductor tendinopathy," rather than the bursitis I thought it was. Problems in the hip/back/pelvic area are, per my orthopedist, "like chasing your tail." Fix your back, your hips start hurting. Work on your hips, your back starts hurting. Some people find the magic balance that makes neither hurt. Some people keep going back and forth forever and dear god I should at least get some points on my credit card for this.

Grrr.

On a more pleasant note, I had a ton of energy last weekend and cleaned the crap out of my apartment in preparation for having a Chandra this weekend. I think the exertion attempted to start a flare--I can usually tell by now that when my hands start hurting that things are about to go south--but I was already planning to pregame for her visit with steroids, so I started that and boom, I feel decent. Minus the front/outsides of my hips hurting, which are not solved by steroids, which is how we know it's mechanical and not arthritis. However, my "full-spectrum CBD infused gummies" came today, so perhaps I will feel better about that shortly. (These are legal because they don't have marijuana in them, just hemp extract. You can get them on Amazon. I got some hemp seed oil pills earlier that didn't do anything, but supposedly it was the wrong part of the hemp, or didn't include the right protein/ligand/whatever? I figured this was worth a try, anyway. At worst I'll have some expensive gummy bears.)

Current Mood: cranky
Crossposts: http://icepixie.livejournal.com/1032010.html

Skating: I kinda did a flying sit spin today! Okay, there wasn't ~~any~~ much sit, but there was some spin and even a couple inches of fly. I landed on one foot and kept spinning. I'll take it.

I also eliminated the entrance to my nascent back scratch spin entirely and actually got a revolution or two in the right place on the blade, with my weight over my right side. BF has done away with the inside three turn everyone uses to start a back spin and is having me enter it from...the closest I can describe it is kind of a mutated Ina Bauer. Just keep curling around on the right foot, dragging the left foot, and the circle gets smaller and smaller until it turns into a spin. In theory. It works better than the three turn entrance, anyway.

Getting my weight over to the right may have helped a little bit with the loop jump, although I'm still too scared to really pick my left foot up and cross it in front while I jump because you cannot save yourself in that position if something goes wrong. I like having an exit strategy. Except my exit strategy leads to me always landing it on two feet, which is not really the goal. Ugh.

Arthritis: On Monday night, ever so briefly, I thought the Enbrel might be working, because usually I'm 100 mg of tramadol in by 6 PM and I actually managed to make it all the way to bed without needing any (I had taken some that morning). Alas, it was short-lived and Tuesday was kind of hellish. But it was close enough to when I take my shot (Sunday afternoons) that I'm somewhat hopeful it's related to the medication, and as it continues to build up in my system I might experience longer and longer periods of not hurting.

I finally made an orthopedics appointment for the hip bursitis(?) that's been going on for at least six weeks now. It's been low-level annoying for long enough that I want professional help, even if the professional can't do much. Although apparently they can just remove the inflamed bursa in an outpatient procedure if steroid shots and physical therapy fail, so there's that.

Apartment: I now have 15 plants in various containers, not counting some hibernating bulbs, mostly in front of my huge western exposure living room window. I may need an intervention. But they love that window so. My purple waffle started as basically half the size of my hand, and within six weeks was bigger than my head. It's still growing. And it bloomed! So did two succulents. Adorable pink flowers. And my not-an-aloe-but-looks-like one made a baby once I repotted it. And I added a table to my screened-in porch, which has been very nice since the weather warmed up.

Crossposts: http://icepixie.livejournal.com/1031830.html

I started learning flying spins today. Flying camel is premature, because I haven't yet figured out back spins (you can only fly into a back camel), but flying sit might be accomplishable by me sometime in the next decade. You wind up like usual for a sit spin, jump straight into the air, and then land on that foot and start spinning.

...Yeah, put that way it sounds pretty impossible to me too, but BF did it today and even I got to the "jumping straight into the air" part, so it seems it can be done.

I also learned yet another entrance into a back scratch spin. I think we may be into the teens by now. We'll see if it works. We're teaming it with a couple of exercises to get my weight over my right side, because it just doesn't want to be over there.

Either the Humira was actually doing something that Enbrel isn't, or I'm having the world's longest, lowest-key flare. Bleh. Tired. Bed now.

Current Mood: sleepy
Crossposts: http://icepixie.livejournal.com/1031605.html

Arthritis: My latest flare was at least nicely-timed. I saw my rheumatologist three days into it and started a steroid pack that day. He also gave me a rather immense amount of prednisolone and pretty much told me to experiment with it. The literature suggests that one per day is within normal variance for naturally produced corticosteroids and thus has no ill effects but can still be helpful for inflammatory disease; it's only once you get above 10 mg prednisone-equivalent per day that the problems like diabetes, hypertension, osteoporosis, etc. start to show up. EULAR (the European League Against Rheumatism, which is a fantastic name for a professional society; American Heart Association, take note!) even recommends it as standard treatment along with TNF-blockers. My doc said I could also just take it like I would an NSAID, two or three times a week as needed, but that doesn't seem very effective--it takes me about 48 hours to process a steroid, generally, so it's not exactly immediate pain relief.

So I'm going to try the one a day plan for a couple of weeks and see what happens. Chandra's coming to visit at the beginning of next month, so I can also pre-medicate with three a day for the increased activity and hopefully prevent another flare.

I've also switched from Humira to Enbrel, since the Humira did nothing. The downside to Enbrel is that you have to inject yourself once a week rather than every other week. But hey, maybe it'll work!

Skating: I had BF take a bit off the toe picks when he sharpened them this time, and it was definitely the right choice. I was getting really scrapey after the last sharpening, and now I'm not. Spins are faster, too, since I'm no longer dragging on the bottom of the pick quite so much. Salchow and waltz jumps were hard to get used to at first--there's more to roll forward on now before hitting the pick--but I think I've gotten them back to normal.

P started teaching me the horribly named but very pretty broken leg spin. At the moment, mine looks nothing like that; it looks more like I really, really need to pee. However, I think it will get better. I'm hoping it will also serve the purpose of training me to quit turning my free foot out so much in spins and eventually jumps, because that's really all that's holding my loop jump back now.

Speaking of which, we tried having me go into loops and flips with a shallower three turn, and it certainly improved things. Still can't land either of them on one foot, but nevertheless, I persist.

Other: This week has had some great weather for sitting out on my screened-in porch. I now have a table on which I can put my laptop and/or a meal, which is quite excellent. I sat out there yesterday and sewed up the too-big armholes on a new dress, and read this morning. Good times.

Current Mood: content
Current Music: "The Echo & The Shadow" - The Well Pennies
Crossposts: http://icepixie.livejournal.com/1031094.html

Skate Nashville was fun. I actually had competition in the freeskate. There were enough adults that it wasn't just me in my division!

This means I came in last out of the four of us, but I was expecting that as I knew at least two of the three had more difficult jumps than I do. Oh, well. (One of the five judges had me third, which was heartening.) I was uncontested in the compulsory moves event, which was fun to prepare for because the compulsory moves this year were all things I enjoy and am good at, but was over so quickly that I don't know if I'll do it again in August.

I bought the professional action shots a photo company was making of everyone, so here are some selected photos.

I have discovered anti-gravity! Nope, just a spread eagle.

Landing the final jump of my three-jump combo

I don't think I'll be trying to do an out of town work conference and a skating competition in the same week again, though. That was very stressful and tiring. (And, unfortunately, this conference next year is going to be Thursday-Saturday instead of Wednesday-Friday, so I really couldn't do both. I'm hoping we'll get a budget from NIH someday soon--thanks, Trump!--and will get to hire someone, and that person can go next year, but I should probably be thinking about a poster I can present, since they have a section for training and educational support posters, and that would get me closer to the quasi-faculty position my boss and I want me to move into someday.)

In fact, it was so stressful that I'm pretty sure it's set off another arthritis flare. I have a previously-scheduled rheumatologist appointment tomorrow, though, so at least relief is in the near future.

Current Mood: tired
Current Music: "Vinte Anos" - Berroguetto
Crossposts: http://icepixie.livejournal.com/1030679.html

LJ: I've been crossposting for years and plan to continue doing so. You can comment at either place, though I suppose I would prefer you do so at DW if only because I have a paid account there and can use different icons. LJ will, I suppose, keep tottering along.

Skating: BF and P are both very happy with my program for Skate Nashville next weekend, as am I. Unfortunately, my flight back from a work conference in DC lands a nervewracking four hours before my first event (compulsory moves; freeskate program is the next day). If all goes as planned I should be fine because it's 10 minutes from the airport to my parents to eat and pick up skates I will have left there, then thirty minutes to the rink, but please cross your fingers the plane doesn't get delayed.

And then after the competition I'm going to get my skates sharpened, because dear god do they need it.

Arthritis: Currently playing another round of "is it arthritis or something fixable?" with new foot and ankle pain. The timing is suspicious, because this started right around the time I noticed my skates were breaking down. But while Achilles tendonitis from that makes sense (and was partially alleviated by adding yet more moleskin to the heels), second toe pain does not. It seems to also be tendonitis-like, and I suppose the real cause could be somewhere further up the foot or ankle where the broken-downness of my skates would affect things and referring to the toes, but it's also kind of stiff and arthritis-y, so...I dunno. I see the rheumatologist the Monday after my competition, so I'm hoping to limp along until then.

Also I want to get off Humira and onto Xeljanz, because it's a daily pill instead of a biweekly injection and short-term studies have shown significant AS improvement for a large chunk of the study populations, so plz to sign me up! (Come on, insurance, cover this one!)

Crossposts: http://icepixie.livejournal.com/1030282.html

Prednisolone is a revelation. 24 hours of pills stopped the flare in its tracks, and it's done so without making me ultra-hyper (and starving) like prednisone does. Too bad all steroids have heart, metabolism, and other bad side effects when used long-term, because if they didn't I would take this forever.

Yesterday I was back to or even a bit above my normal, which is maybe 80% of regular-people normal. You reduce the amount of medication each day, so today my back and hips are muttering angrily, but no more than usual, and the rest of my body is happy. My joints bend, I can get out of bed without tools, and I have energy again, so I can do things like my taxes and grocery shopping and holy cow, I even cooked something that required real preparation and a heat source other than a microwave today!

My tax refund came to within $10 of the Skate Nashville entry fee, which was a pleasant surprise. I guess last year wasn't a fluke and despite choosing to withhold as little as possible because I would prefer I earn the interest on my wages rather than the IRS, tax law and my current salary will combine to give me about $150 in the spring. Sweet.

Speaking of skating, P and I ended up ditching all of the possible music choices in my poll and going with the October Sky soundtrack. The music is technically 5 seconds too long for Pre-Bronze, but they don't start timing until you start moving, and they stop when you stop moving, so as long as I don't start right away and end a bit early, it's all good. We started working on it yesterday and laid out the majority of the choreography, though it's still a work in progress. The structure is fairly similar to the Amelie program, but different enough to be interesting. It has a left forward inside three turn in the footwork sequence, which is my bad side on forward inside threes, so I'm hoping it will make me actually work on it so it doesn't look so inferior to the right forward inside three when I do it as part of my Silver Moves test. Plus I think I can get this cool move I came up with to look good in six weeks. It's a forward inside spiral, change of edge to...it doesn't have a name, but I'm upright and on an outside edge with my arms doing interesting things and my free foot crossed in front.

For some reason, this competition wants even Pre-Bronze competitors to fill out the IJS planned program content form (not actually needed for low-level events like mine!), but they don't allow you to include waltz jumps, half-flips, or half-loops, which...make up most of the jumps in my program. So it looks like I only have two planned jumping passes when I actually have four. I guess that's okay. I'll probably be the only competitor in this division again anyway, so I can't imagine it matters.

I'm also doing Adult Bronze Compulsory Moves, which this year include only things I'm good at and none of the things I'm bad at! You get a minute and fifteen seconds with no music to do a waltz jump-toe loop combination, a salchow, a sit spin (my best spin!), and a spiral sequence of at least two spirals (my spirals are pretty darn good for an adult).

Current Mood: grateful
Crossposts: http://icepixie.livejournal.com/1029567.html

Skating: Third back spin lesson with BF today. We tried a couple new techniques, and I did something resembling a back scratch spin at one point! He's given up on teaching me the start-with-free-leg-turned-out method, claiming I have so much turnout that it's counterproductive, as it winds up pulling me toward the inside. Or something. Anyway, we went straight to pulling the free leg up as parallel as possible to the skating leg--which for me, let's face it, is still turned out 90% of the time--and it's going better.

Humira: I had a miserable weekend where I couldn't go on after about 90 minutes of shopping (admittedly, this was after I spent $50 on Christmas tree ornaments, so maybe this was a blessing in disguise), then Monday and Tuesday were much better than usual. Today, eh, back to normal. I just took my third shot, so I'm starting week five. Eight more weeks before we can declare it a success or a failure. One of the common side effects is a sore throat, and unfortunately it's one I've got. About three times a week, I feel like I'm in the beginning stages of a cold, but the cold never shows up. Better than three colds a week, I suppose.

Fandom: I finally started on my Yuletide fic last weekend. Well, the one I think I'm actually going to finish, as opposed to the two false starts. 125 words. Onward...

Crossposts: http://icepixie.livejournal.com/1025999.html

Skating: Yesterday I did the entire Silver forward inside-back outside three turn pattern, down the entire rink on each foot, without a single step down on any of the back threes. HOORAY.

My back spin lesson with BF last week was good. He said I was trying to go immediately from step one to step four in a four-step spin, so we're breaking it down into micro parts. As in, we started on the wall. Then we went to just trying to spin on the right foot with the left leg turned out(!). Maybe I'll get this spin yet.

Humira: Eh. I haven't noticed any difference yet. Maybe I get a third or fourth hour of negligible pain in the first half of the day, some days, but it's still within the usual variation of the last year. The second dose is on Wednesday. *crosses fingers* Today was a lovely day it would've been nice to get out and walk around in, but my thought process for some time has been, "Do I hurt? I'm not walking anywhere. Do I not hurt? Better not walk around or I'll start hurting." It would be nice to break out of that someday.

Music: Meet my new favorite contemporary composer, Norwegian Ola Gjeilo. He composes for choir, piano, and strings. I've currently got his setting of "The Lake Isle of Innisfree" on repeat, but the entire album it comes from is fantastic.

Crossposts: http://icepixie.livejournal.com/1025105.html

Humira: Gave myself my first shot on Tuesday. It wasn't as bad as I thought it might be; basically it's akin to an allergy shot that has the needle stay in the skin about twice as long. I got some post-injection fatigue that day and the next, but it went away. I had a very bad pain day on Thursday, set off by two hours of my worst trigger, shopping (something about standing and sorting through racks of stuff just kills my back), but on the upside I got a new dress. The next day I skated for two hours and then walked the dog with no increase over my normal background pain level, so...improvement? Today's been about the same.

Yuletide: BEARS. I know what I want to write but am having trouble getting words on the page.

Skating: Right back inside three turns: UNLOCKED! (Let us not speak of left back inside three turns.) I'm getting more revolutions in forward camel spins, sometimes up to four, and getting better at sitting lower in camel-sit spins. Layback spins exist for a couple of revolutions, albeit I don't know that I'll ever be brave enough to really arch my back and lean my head back.

( Video )

I asked BF for a lesson on back spins and loop jumps this week, which should be exciting. P and J the elder both say he'll have great tricks to get me to actually do not-awful versions of these elements.

TV: It's been aaaages since I watched any television. Since Agent Carter finished in March, I think it was. I guess The Librarians is coming back next month, but other than that I got bupkis. Is there anything worth watching on these days? I haven't kept up. Since fandom left LJ/DW and I didn't really follow to Tumblr or Imzy, I've been out of the loop.

Current Music: "Feels Like Home" - Christa Wells
Crossposts: http://icepixie.livejournal.com/1024828.html

Ugh. I got distracted talking to P before the freestyle session started yesterday and got on the ice with my blade guards on. I was hanging on to the boards with my left hand and managed to sort of let myself down gently, so it didn't hurt at the time. Today: OUCH. My whole left side is screaming at me.

On the bright side: I have a lot of drugs for that.

I think also have to eat some crow. Three days into the prednisone, and my lower back/sacroiliac pain is GONE. I walked my dog around the block today without back pain for the first time in over two years.

I guess this means I need to admit I have ankylosing spondylitis and should start the Humira. I'm glad I at least know turning off part of my immune system should help, rather than winging it on a hope and a prayer. And it'll be nice not to be in constant pain, assuming the Humira works as well as prednisone.

(Bad side: The steroids did nothing for all of my other joints, including elbows, fingers, thumbs, knees, ankles, and toes. But the back pain is 70% of my daily pain, so I guess that's okay. And perhaps the Cymbalta will take care of the other joints in time.)