Synovial Syntax

Posts Tagged ‘Doing OK

Back to the blog. Have had my husband working abroad since winter, and I’ve started a new job this spring. This has eaten most of my hobbies alive (sob, blog, sob, book club, sob gossiping on mumsnet and the other usual social network suspects).

I am prompted to get back here by Wednesday’s upcoming consultant appointment. All is well, or well enough. The big RA problem in my life now is my inability to exercise without hurting myself. I still can’t figure it out in the time and resources available to me. Anyway, update pic:

RA Obsessive detail May 2011

Noteworthy stuff:
Spike for onset of cold winter weather last autumn

Spike for MISERABLE bout of flu over Xmas, despite vaccination

MTX transferred to injectable, nausea and weakness begone! Lovely improvement in feeling of wellbeing.

Small spike in March from tonsillitis, occurred same time as start of new job

Levels of ache and pain not really down as well since, though that might be stress of adding routine work to my life.

Noteworthy stuff not on pic: first holiday since this all began at the end of this month. CHEERS!

It’s going OK!

I got some prescription goggles to boost my confidence before trying swimming again. I just can’t find a stroke that doesn’t gnaw at my ex-fissured tendon in my right shoulder though, so I will be keeping the goggles* for only very recreational swims for the time being, and for being able to tell if my kids are actually happy or not when in the pool with them.

On the other hand, as it were, I am really getting worked out with no twinges with the Wii EA Sports trainer thingy. I’ve never done this kind of thing before, resistance training, but after my consultant sang the praises of it in stabilising and strengthening joints I knew I had to have a go. It’s really easy to work round any things you shouldn’t attempt, and just so much fun. Cardio boxing anyone? I never knew I had that much left-right-left-right jab in me. Must be the Humira injections 😉 I also love the obstacle courses where you do a variety of sporty sweaty things without getting bored or wondering what’s for dinner.

Talking of which, nearly two stone off now, despite onset of summer holiday meals, picnics, bbqs, ice-creams. Theoretically, four still to go by BMI measures, but even as svelte young thing I looked weird if a mid-range BMI, twiggy, so I’ll be happy with another two off.

Oh my, I would love to shop from all the High Street shops again, not just a selected few.

*My fingers kind of refuse to type “goggles”. They want to type “Google” all the time. You know you are online too much when this kind of thing starts happening.

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


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