I have just had a call from a Rheumy nurse, who must have been very suprised when I said " Thank you for calling I'm at my wits end" she said i was calling about the Trace RA trial (this is looking at whether taking a statin would help the inflamation in RA) I said OK I'll help with the trial if you help me with the anemia, so I told her my sorry tale.
A RESULT.............. I will get a call tomorrow to go and have bloods taken for crossmatching, I did then say I am really sorry but I am AB+ rare bloodtype something like 3% of the population of the UK.
So anyway, they may be able to do a transfusion friday if a bed available or Monday / Tuesday.
I would hop and skip if I could, thats the next battle Physio when am I going to have any physio, hubs said we could go privately but why should we have to start paying out for these services, i heard the other day that a lad that had been raving drunk had fallen when he was jumping from one car roof to another. He broke his leg, how sad, but he is now getting physio, hydro pool, and wait for it a brand new self propelled wheelchair. When I can't get diddly squat, and had to buy my own stroller to use in the house as how do you get things from the fridge to worktop etc when you are on 2 sticks.
At this point i should go and make bread, to let my frustration out on thekneading.
So any how, onward and upward folks, Patience is a virtue, or as I like to remember, Patience was a Gloucester Old Spot Pig; helps not being too virtueous
Best wishes.
xxTriciaxx
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Tricia-P
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Its always the same if your drunk,junkie,or a waster you get everything you need. If like us you are disabled,can't work, or are limited in what we can we get what you said diddly squat and when we do get anything we have to fight to get it. Enjoy your breadmaking.xxxx
If patience is a virtue you must be a saint. As for kneading the dough that's a terrible strain on the wrists and fingers, best get a kenwood. I've never tried car roof gymnastics but it sounds like a great way to get fit, specially if traffic is moving fast.I'm not sure whether my knees are up to that yet so I'll settle for standing on the bonnet of my son's Focus while he's away in Thailand. I could be there a while.
Some good news for you at last-hope you get the transfusion ASAP,totally agree with you on the physio but for your own sake maybe if you can afford it its's worth thinking about
My hubbie gave blood yesterday and he's AB + too so at least there's one pint knocking about!
I hope my bubble doesn't burst, but i'm getting quite excited thinking that i might feel better.
Hugs xxTriciaxxx
Hope you feel better soon.. I had to pay for some private physio and hydro to start me off as waiting lists v long in my county. It was money well spent because they used my hosp faciltiies and as the private lady unknown to me was friends with one of the head hydro physios I seemed to speed up the list??!
Great news Tricia what good timing for a ra trial hope it goes well and you get sorted sooner rather than later
Dear Tricia - lovely to hear from you with your blogs again. Hope that they get you sorted out soon. Like Summer I have paid for private physio in the past and got appts within 2 weeks with a lovely lady whose husband is also an orthopaedic surgeon. Fortunately we were on Bupa at the time, so most of it was covered.
I have my first NHS physio appt today at our local surgery to try and sort out my shoulder. Have waited 4 weeks for the appt so not bad going. (BUPA won't cover me any more for anything to do with RA!).
I take statins but didn't know if they could help with inflammation of RA - that's really interesting. Must ask my consultant when I see him on the 18th.
Don't forget Tricia, you can borrow equipment from the Red Cross - it may not be the most up to the minute equipment but worth contacting them.
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