Saturday, March 12, 2011

Catching Up

I need to find the time in my life to write.

So much has been happening and there are so many emotions surrounding it.

I saw the Rheum registrar, a young Indian man, who seemed very nervous and slightly with the deer-in-headlights appearance. It's the one part of my illness I absolutely hate. I just simply can't relate to people who treat you without that essential human connection. I guess if I came across someone who was really extraordinary and something I've always wanted to see in real life, I'd be excited too, but, as a patient, it sucks.

Basically, I've been denied my requests for funding for Anakinra. And they want to take away my diagnosis. That really unsettled me for a few weeks. I started having nightmares again. I simply am running out of options and it makes me feel I need to find another Rheum. Someone who will take these dead ends and DO something. Be proactive. I can't live my life waiting for someone to have the time for me. I've already done that in my personal life with poor results.

Miss S saw the Paed Rheum who IS proactive and has some pretty big friends at London's Children's Hospital where they will do her genetic testing. However, she has some FIRSTS that have to happen. 1) We have to have blood test proof of an elevated inflammation marker, something we have NEVER been able to document in me, save for the gallbladder thing.

We also have to do some testing on Soph, though, at this stage, we're not sure what it will be. It might just be xrays but it could involve explorative surgery. No mother looks forwards to that decision.

School has been a major source of anxiety for us all, to the point of insomnia. Lots to talk about there. The bottom line is the teacher is unhappy with Sophie having time out 2 or 3 times a day for a rest, for her ongoing fatigue. I don't want this to become a permanent source of anxiety for us. She is showing ongoing fatigue signs, she's not coping with the heat and it should be a simple solution.

Instead, it's become a 'We just pulled our kid out of school because of 1 teacher'.

I attempted a 7 day Colchicine trial, suggested by the Registrar as part of proving my 'need' for funded drugs. I made it 5 days and can't do more. Everything burns. It hurts to move. The nausea and stomach symptoms are horrendous. I felt like crawling into a hole and being left for dead earlier today.

Summer has come and gone. It makes me melancholic to see Autumn arriving. It makes me sad it's March. It makes me sad it will be 4 years in 9 days.

Soph has been home for 2 weeks and that's 2 weeks I haven't been going in for my voluntary role. That leaves me with tremendous guilt, given we've just had mega need there due to the displacement of Canterbury residents following the earthquake in Christchurch.

I feel like I'm holding things together with some sort of dissolving threading. It's going to give at some point.

To get me through, I've been taking about 6 kids vitamins every day. It does seem to be providing wonders of energy and health. I remember it was my tonic when Spph was born and we weren't sleeping.

I've been thinking of adding Water kefir to my list of crazy things to try and get well. Must try to find some in nz to get started.

My head is just killing me but I can't lie down because of the colchicine induced nausea.


Post a Comment