So it's been a while since my last blog. I had actually written a page a month or so ago but stupidly forgot to hit 'save' and all that appeared on my blog for viewers was a heading...and no post. Such a 'tard. Anyway. There is still great news though!
My last appointment with my neuro revealed that the chemo from February was still working like a charm. The CD19 cells the Rituximab is designed to kill were still at undetectable levels and that means I don't need an infusion yet! I've been having monthly blood tests to check the cell levels and the rule is that if I don't hear from Micky (my neuro) then it's still good news. I've had 3 tests so far and no phone call. I have one more test in a couple of weeks and then go back to see Micky in October. I am planning a week off work in between all of this, very soon, and my only wish is that things will stay quiet until after that! I really need a holiday and some pampering.
I consider myself extremely lucky even though, admittedly, I will need to have more chemo eventually. But any break, no matter how small, feels like a little miracle to me at the moment. The only caveat Micky gave me was that if I do have a relapse now he won't be able to do much. SO I have decided there are to be no more relapses ever, thank you very much. I have a pretty intensive vitamin and health care regime that I'm sure can also be attributed to my current wellbeing. Every day I take 3-4 grams of fish oil, Vit B multi, Vit C, calcium, zinc and Vitamin D. I take the occassional inner health plus tablet and some slippery elm. I sit in the morning or afternoon sun for about 15 minutes every day without sunscreen. I exercise fairly regularly - runs and walks. I see my Chiropractor fortnightly and my GP monthly. I get fortnightly massages and see my psychologist regularly to keep my panic in check. I drink a glass of red grape juice most nights (the alcoholic variety), soak in the bath with a book once a week, and try to get at least 9 hours sleep every night.
This is a lifestyle I've always tried to maintain over the years, and managed it very inconsistently, but now I feel like there is no option to slack off. Ever. And there are certain things that I just cannot skip - like my fish oil and sunlight. I freak out if I forget my daily dose and worry that something bad will happen. That's a bit of crazy talk really, but I know how important these things are to managing MS and keeping it at bay. If anyone out there has any experience with this or any advice about things I could add to my regime I would really love to hear it - and maybe swap notes. I am still yet to meet another soul with MS so I feel a bit isolated. That will hopefully change soon as the MS society are sending a local coordinator to visit me soon. I think the idea is that they will offer me services that might help me cope and possibly introduce me to some other people in my area that have the same bullshit disease. I'll let you know!
Until next time...stay well!
