11 days ago I went for the routine blood test which is conditional to taking methatrexate, remembering it is a drug for cancer patients doesn't exclude some of the side effects that sometimes do not agree with RA endurers. I thought nothing of it and waited for my repeat prescription to be ordered and delivered within 2/3 days. The following day I had a call from my GP telling me to stop taking the methatrexate until further notice.
I don't tend to see my GP about a lot of things, I tend to either wait till I see my Rheumatologist or suffer in silence so it was a little worrying to get this call. He's a good Dr and I get on well with him, he listens and seems trust what I say. Having had the conversation on how I wish to be given information, ie. do I want the facts, relative information or full information. I opted for relative b/c 1. I don't remember all details when it comes to medical stuff and 2. I don't want to worry about what could be unless it becomes relative to me. So Dr H explained that my blood count should be between 25-40 and mine has always been 35-40 but this time round it was 112. Quite a jump there.
I asked what this meant and he said that such high red blood cells are potentially a bone marrow risk. At this point I didn't want/need more information b/c it was a shock to hear and it also wasn't relative unless a second blood test gave similar concern. I was asked to get another blood test the following week.
Something went a bit wrong somewhere there, the nurse didn't prioritise the appt that the Dr had classed as urgent and I now get the test tomorrow. I know the Dr is going to chase up the results at the local hospital the following morning so till Wednesday I won't know if I can go back on methatrexate or not. I don't know if there is an alternative medication if I can't.
Because I've only been on methatrexate 2 months and I had a sulphasalazine jab at the same time I don't truly know how much of my improved mobility was relative to what drug but last week I noticed a difference and as the days have gone on I'm seeing more swellings, stiffness, pain and limited movement. It hurts to get up off the sofa, to stand and to get my knees comfortable again. Popping to the shop like I often do is again an ordeal. My local garage, where I've made my regular go to place, are very good as they've watched me go in almost daily, we banter and have a giggle as I'm being served. There's around 4 or so staff that will see me and either walk round the store with me or come to my aid when they think I'm done then will carry the stuff to the car, without asking, they just care and that says a lot about them personally and as staff. It keeps me going back even if I do pay a little over the odds with some things, having that help makes a huge difference to me.
I have a new and temporary occupational therapist (they're going through job shifts/retirements/recruitments at the moment) who has assessed my need for a stair lift, said that she's recommending one as even with metha I still struggle to get up the 13 stairs. Now it's in the system I wont get notice of a yes or no but I'll find that one day someone will show up and be ready to just fit it, that's what happened with my new wheelchair and when I first had the other aids I've come to rely on. I find it almost humorous really that they assume I have no life whatsoever. I know they're right but they don't!! ;)
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| The new Midi Merc... yet to be used, three weeks on :/ |
So here we are, the end of the Easter break and I've done zero with my kids, they complain about nothing and entertain themselves. Not the kind of parenting I ever wanted and definitely not what I'm comfortable with. I have two other kids, two granddaughters and two parents who I wish I could see more too, but it's not going to happen as I am now. I don't mind admitting that I have hit rock bottom again. I feel caged in with this condition, like a recluse at home and pretty much alone in almost every way. I don't know how to fix it or come back from it at this point.
I won't even get started on the fatigue, that just reduces me to tears at the drop of a hat.
Today I feel like I'm no longer living but just existing, and b/c of that so are my kids and that really makes me feel useless no matter how much it may be temporary or they understand. I wish I could feel that it will be different next week or next month, but then life with arthritis is so unpredictable that you can't even make plans from one day to the next.
Debs
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