Friday, 2 September 2011

Mummy's Brave Soldier. That's Me.

A bit of a milestone was reached yesterday. More words than piccies today, sorry!

I started self injecting the methotrexate several weeks ago at hospital - my rheumatoid arthritis is rather severe and the specialist wanted me on the highest dose as quickly as possible (the injections are to try and bypass the sickness caused by the tablet version).

Methotrexate, in brief slows down the damage to my joints but can take up to 6 months to start showing improvement. Because it is one of the drugs used in chemotherapy it also caused sickness, diarrhoea etc and is classed as a cytotoxic drug. I also take another tablet (Hydroxychloroquine) which is used to treat malaria - on its own it is apparently of minimal help with RA but works well alongside methotrexate. More of this one in a minute.

Mum went with me for the first self injecting session, also to hear all the relevant information as she is the only person I am likely to inject in front of (my daughter would faint instantly!). Very strange thing to stick a needle into your skin and press that plunger, but I managed it and have managed it every week since with 5mg increases each week. I hit the maximum dosage last week and it was a case of 'let's see if your body can tolerate it before we sign you off'.
Thankfully the sickness seems to have eased and become extreme exhaustion instead (I slept straight through a couple of days last week and sadly had to miss a day out with a friend that I had been looking forward to).

So yesterday I injected 25mg again and signed the consent forms to arrange for home delivery - it will make a huge difference not to have to make the trip to hospital every week. My nurse, Liz is utterly brilliant - extremely knowledgeable but also a truly lovely kind and funny woman.

My thighs are littered with little bruises now (thank goodness for chunky thighs! Plenty to grip for sticking those needles in) and I am utterly worn out, but so far no sickness.

I don't quite know how all this happened - I haven't felt great since SCKC last summer, and at first put it down to overdoing things and having a bit of an ME slump as a result. Plus the stress from work. Then throw in the return of my endometriosis and the resulting operation, the digestive problems and the bladder disease - all controlled fairly well by gluten, dairy, citrus and caffeine free diet.

THEN the pain started and in April I had my first appointment at the rheumatology hospital and it's all gone a bit bonkersmad since then. This time of year is very strange - my brain still thinks it should be ready to go back to work after the summer hols.

The Hydroxychloroquine - I did say there was more to say about that. It can affect your eyes, and the pressure behind mine was high again when I got my new glasses so I was at the eye hospital on Wednesday (might as well do a Grand Tour of all the hospitals in the area). Thankfully my eyes are very healthy, and all I had to cope with was those damned drops that make your eyes HUUUUUGE and weird feeling. I have to go each year now to keep a check on my eyes but that's nuffink. Phew.
 It was the first time I have used hospital transport (have now booked it for all my appointments as I have been paying around £15 each week to do my injection) and the drivers were superb - I am not used to someone looking after me so well, opening doors, carrying my bag etc. If you think you may be entitled to it do check, I didn't realise I was until the lady booking my eye appointment told me.

So there it is, up to date on most health issues. I have to collect a prescription for calcium and vitamin D next week as both are very low, and my blood test results were a bit all over the place so that's being monitored closely. Blood tests every two weeks.

Apologies for the lack of piccies , knitting, crafty stuff etc - I AM knitting at the mo, something I am playing about with for my daughter for Christmas so will get some photos taken asap and have a more chirpy colourful post soon. Truly.

1 comment:

Stitched Together said...

I'm really pleased that you have now got up the correct dosage and that you can stick yourself too. It must be a massive relief to not have to go the hospital for it.

I have used hospital transport in the past. It must be better where you are because I have often spent hours hanging around on both legs of the journey because they couldn't give a time when they would pick me up outside of a 2 hour window, I've been either late or really early for appointments and one friend had to wait about 6 hours for her lift once to get home from the hospital.

I get DLA, in my head that pays for my taxis to the hospital. It may cost more, but it's much better to only have to wait 10 mins to be picked up.