RA-coaster, “you get more out of it”
Posted by: SynovialSensation on: November 18, 2009
As I’m having a dent thumped in my recent breeziness inspired by good response to Humira, I was thinking about RA Guy’s rollercoaster vid he posted earlier in the year (I can’t find it RA Guy!). I thought it a potent and grinding description of the flares of RA. I see today he’s also been posting about how at least it’s not boring!
I can’t agree more. I expect that this minor set back I’m having will only sweeten my memories of recent good times. And maybe they’ll come again, maybe they won’t. I do kind of like that while I was better I was obsessed with same-old-same-old route back to same-old same-old work, but that now I’m thinking creatively about it again. How to and when to get back to work if the Humira promise turns out to be short lived. It’s much less boring to have a challenge, and a new view on things.
6th Humira dose
Posted by: SynovialSensation on: November 18, 2009
I usually take this last thing at night every other Tuesday. Hummed and hawed about it yesterday and didn’t last night, but did take it along with MTX this morning. Have been feeling various minorish types of unwell for over a week now: cough, grotty sinuses, tired, rheumatoid nodule up, right hip and left knee twinging, rock hard lymph glands and then some more cough and sinus action.
Suspected an RA flare, trying to ignore it as I so want my precious wonderful remission to stay! Then yesterday I had a bout of full on 100% RA weariness, and slept 12 hours. So despite some minor signs of infection, have taken the DMARDS. I think my infection symptoms are just a combo of the various colds doing the rounds at nursery and cold weather. Am wondering if the stimulation to my immune system of recent vaccinations has complicated things a bit.
I think my search for narrative/understanding of this stuff is tiring. It’s just a posh way for saying I’m worrying, isn’t it? But I have to learn from each thing that happens so I can take care of myself and the family. Wonder how it pans out…
Canary
Posted by: SynovialSensation on: November 16, 2009
It's a man/bird love thang
Humira due tomorrow. My ‘canary’, a rheumatoid nodule on the back of my left wrist is filling up again, warning of inflammatory stuff happening again along with slightly increased morning stiffness and a couple of niggling joints. Beginning to think I do need to take this jab every 11 days, not every 14. Can this be done I wonder? Will ask consultant in January if this pattern persists.
Take it back
Posted by: SynovialSensation on: November 14, 2009
Blinking nora that seasonal flu jab site is sore. Really felt it when swimming, every stroke of right arm felt like a punchlet. But I can now do length sets of 6 of each stroke before changing over, and did 30 lengths in total. Small and consisent, that’s going to be the secret of my exercise future, the polar opposite of my past eating habits >greedy guts emoticon<
Have a good weekend everyone.
Just under 3 hours
Posted by: SynovialSensation on: November 11, 2009
Was the time spent waiting for my two appointments today. One hospital, one GP. Add in travelling time, nearly 5 hours. I’m not going to sound off about this, just note it. I was and am too busy trying to figure out a realistic number of hours I can offer to work in a month, with children, their sicknesses, school holidays, house management and healthcare appointments. I’m thinking 90 hours a month maybe, 70 comfortably. Can get a lot done in the right job with that many hours, even if only half of them are really productive. I’ll see.
So after that waiting I got my Pneumovax and seasonal flu jabs done, and note that compared to the Humira, I could barely feel the injections. My nurse specialist didn’t make it to work today, so I had a cheery registrar and med student instead. They were in a state of aching delight over my graph of symptoms and meds, and we spent more time going over my old CV than talking about Humira progress. Funnily enough, it’s been a bigger boost than anything else could have been, to remember myself being effective and engaged outside of the home, and illness.
Also, spent my travelling time rehearsing ideas for interview type situations. It’ll be a bit of a challenge to be brief and clear about where the RA and parental responsibilities have overlapped to keep me out of paid employment, and how I will manage them from now on in.
Plans A to Z
Posted by: SynovialSensation on: November 10, 2009
All this progress on Humira is a real relief and starts me thinking about having more of a life than trying to cope with family and home. I’ve got so many plans and ideas rummaging around, and some underway!
What a lot of plans hey? And if it all goes belly up, like me at the end of a tough aqua-aerobics session, then Plan B is knowing I can cope with most of the challenges of RA if I give myself a chance. I still keep practising the meditation and relaxation techniques I need to deal with setbacks, pain and uncertainty.
Plan B
5th Humira dose
Posted by: SynovialSensation on: November 10, 2009
Had this last week, again OUCH, but nothing compared to the realms of RA pain so *insert Gallic shrug here!*
Still no identifiable joint pains, though tummy upsets are back again, which Humira appeared to have stopped. Time to refine the diet further methinks, clearly body isn’t liking something that’s going in foodwise.
Have noted some pink swelling and a faint feeling of mentholation a couple of recent mornings. I think this may be the now bone cold and slightly damp weather telling on me. Hope it is just that. Energy levels remain fine.
4th Humira dose
Posted by: SynovialSensation on: October 21, 2009
I feel pretty, oh so pretty (if a little over-optimistic)
O I was more than ready for that…two days before it was due yesterday I could feel the fatigue pulling me back down and see my hands reddening and puffing up again. Feel great again today.
It hurt. I have dropped maybe 2 whole dress sizes in the last month from being happy, being able to move and eating for hunger rather than comfort or pain distraction. It’s extraordinary and wholly welcome but boy did the jab bite on my less substantial than before belly.
Maxillo-facial consult on Friday. Feel somewhat fraudulent since there has been zero pain for three weeks now. Still, good time to get it imaged. I fully expect there will be ructions with it at some stage in the future.
