Synovial Syntax

On Wednesday I also got the green light to get into some proper exercise. My joints have stabilised and shoulder tendon healed. I’ve been advised three things – swim for cardio health, resistance train to strengthen joint support from muscles and try and get on a power plate now and then to improve bone density. I think that was what he said about the power plate anyway.

Am going to go and look up this link with resistance training and RA especially.

Wanted to fit a first swim into a very busy time last week, was about to set off and realised I’d thrown my goggles out in a hissy fit back in the bad old days, probably accompanied by a histrionic ‘I’ll never swim again, *sob*’. Have decided to invest in the fit future and been to SpecSavers to treat myself to prescription goggles this time. Looking forward to this.

In lieu of the swim, or cash for trainer/gym at the moment, I hoiked myself back onto the Wii Fit today. Managed to fit 15 minutes of its aerobic stuff into a daftly complex morning. Was thrilled to find my hips and knees have stopped grating and wobbling out when doing the virtual hula hoop. Really feels like progress, that tiny 15 minutes.

Confidence booster. I just did this today:)

Flick

Feel those elbows cope!

I’m just out of consult, and it’s as good as it gets. It’s a sort of remission, or a serious damping down at any rate.

I have to live with the monthly peaks, plan around them and get exercising again preferably without injuring myself this time. Lesson learnt, just because it feels good at the time, I can’t really thrash things in the pool like I used to! Plus I must stop trying to play so hard with my ever growing young boys. The main impact of injuries in my case seems to be, apart from extra joint damage, that I then have to take steroids which melt my immune system, increasing infections rate and severity and meaning I have to delay the MTX and Humira. Which in turn cycles me into non-healing joints etc.

I live and learn.

Bloods are all behaving nicely. It was also reassuring to hear about new research which shows anti-TNFs reduce cholesterol which been raised a bit by MTX.

I had a good whinge about my GPs daft notion that I go in 24 times a year to present blood results, despite only have my bloods done 6 times a year (which needs 12 visits only). Hopefully I’ve imploded that situation anyway by arranging with pharmacy to run my repeat MTX situation. They seem infinitely more efficient and less panicky than the GP reception staff.

That’s it really. I know this situation is as good as it gets, as my next appointments are in the agreeably hazy future, and not next month.

Huuray:)

No, I’ve not lost so much weight my funbags are deflating. As very if. Though I have lost some weight, preen preen. It is the thought of the surgeries likely to come in years to come that is making me peg away at it, trying to get a pound or two off every month.

Sidetracked at outset, not good is it? What I came on to say is that I’ve done another snapshot of The Graph That Doctors Love (TM) prior to my next consult with rheumatology in a few days time. Sure puts perspective on what I felt was a painful and problematic late winter/early spring. Not as bad as it has been so far. Think it was the general unwellness wearing me down most in retrospect. So, things settling down OK I think when I can actually take my Humira regularly. And small peaks every month due to hormonal shifts. Well they look small on paper but I feel ruddy rudderless and sore on those few days every month.

For the record, I am so glad that the shoulder pain from a stupid injury that I had Feb-April is gone that I am currently raising a beer to the vagueness of my memory of it. The pain that is, not the beer. Looking forward to finding out more about my bloods recently. Wonder how close I am to whatever is the current working definition of remission. Will report back next weekend I expect.

RA prescribing by joints inflammed, pain reporting and drugs going in

Warp speed 6, Captain

A virtual RA acquaintance has started a blog, and I’m linking to it to celebrate her much deserved good fortune with Cimzia. Hello, wonker!

Tags:

Been AWOL, not entirely sure why. Combination of boredom with RA, resurgence of activity after the boredom and switch of browser where I didn’t tab this site as a daily look-at. Mistake! Out of sight, out of mind.

Anyway, a brief update:

  • End of winter was hard. Many bugs from older boy’s new school, round after round of infection in cold, damp weather. Got to the stage where I was only able to take Humira about once a month, so of course, I flared.
  • Once that was under control we experimented with reducing dose of methotrexate, mistake, flared again. Methotrexate back up again, Humira taken every 2 weeks, happy result: I’m very comfortable and very well feeling. Just very mild joint warmth and slowness in the morning.
  • Oh and during the whole flare-y winter period I also injured my shoulder quite bady. Swung the younger child up onto my hip and just felt my shoulder give. Fissured but luckily not torn tendons, then bursitis with synovitis. Got about 60% of that pain under control with a local steroid shot, but it was a subsequent systemic steroid that really healed me. I did not enjoy living on tramadol etc for a couple of months, but needs must…I stopped the addictive drugs with a couple of days mild headache only. Lovely to have a fresh head again.
  • Am being very conservative about activity still, though oh! I would love to swim or something.
    Especially as I’m losing weight after a good period off steroids and healthy eating.
  • Workwise: I did some simple consulting, failed to get a job in my old field that was part-time on grounds of being over-qualified and am currently doing some data analysis in a different field which is very refreshing and reviving. Not much, a sporadic 10-20 hours a week only.
  • More sooner, I seem to have found my discipline mojo recently.

    A song about auto-immune diseases? No way! Yes way.

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