Synovial Syntax

So, I’ve been under usual measures on the vitamin D front, I learnt at nurse check up today. Symptoms: fatigue, joint pain and other familiar bad boys for those of us blessed by RA. Ho-ho, I joshed, so maybe the RA diagnosis a whole fantasy of modern diagnosis for me. Ribald laughter from us both. But oh, I wish! Did another test fo Vit D, to see if still down and needing supplementation.

Still all else is very equal. Struggled when kids went back to school with the usual September onslaught of minor infections that lingered like the clap in brothel. Seem to be done with that now, and really doing well with the injectable methotrexate. Cannot discern any side effects from it at all.

Just had my 6 monthly Professor visit. 17.5mg MTX + Humira have me as well as can be hoped, hurray. Got my non-swollen knuckles rapped for falling off of nurse’s radar and missing 2 monthly checks. Ah, the joy of feeling well enough to, heh?¬†and I’m pleased to report I am 34lbs lighter than at my last post and very much more active and toned :)

Hello! Thought I’d swing by and say, here I am, living with RA and it’s OK enough. Started and stopped a part time job a while ago. Was very taxing, but much of that wasn’t me or the RA. Though I definetely stopped it before the job did make me properly ill. Will try better luck next time, possibly when youngest starts school, unless some plum drops in my lap before then.

Have made a big decision to go on a very low calorie diet to try and improve health and strength. Weight has been creeping on +++ but enough excuses, time to deal with it. Will pop a note in good time about how that goes. All medics very supportive, despite lowness of calorie intake.

Another consult in September, will be back then. Much happier on the 17.5mg of injectable MTX than on the oral.

Ah, well now, wasn’t expecting that. Bloods a teeny tiny bit elevated recently, Prof taking my niggling aches more seriously than me. He ‘doesn’t like’ that my elbows are beginning to give when weightbearing. No, me neither, but I’m still a bit deflated to have him finding issue…and increasing my sub-cut MTX to 17.5mg.

Other than that, watch and see. It could all just be a reaction to the pressure of the year so far – see previous post re: husband working abroad and me starting a new job. It might be all that is keeping me from remission status, and in slight progression status.

To be honest, I’d rather feel that life was engaging and developing and I was in slight progression, than that I coudn’t work and husband had to prematurely rein in work for me to acheive a period of formal remission. So, I may be trading stress to get interest out of life. It seems a fair trade at these not-wildly-stressed/not-wildly-inflammed levels!

He has said to take more note of aches and pains and joints slips and weaknesses though. Apparently there’s a number of us whose pain thresholds get so high, and pain medication use gets so efficiently targeted, that we don’t get enough messages from what our bodies are trying to tell us after a few years of RA. I hadn’t really thought of that, I can see some truth in it for me. Anyone else?

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!

Currently on tenterhooks to see how much damage I’ve just done to my right shoulder this time. Had to catch my five year old as he fell head over tail down the stairs. As I stood there holding him up, upside down, with his head about 6 inches from a tiled floor I thought ‘Thank goodness I got him’ closely followed by ‘Argh!’.

My right shoulder is again pretty sore, have had to hit up the pain relief and anti-inflammatories. Really hoping it settles OK. No exercise, boo hoo, so I sublimated that urge by exploring how to build a Wiki for me and a few RA mates to record our exercise experiences. Hope to link to that after my trip away next week.

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.

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