Spoke too soon, dammit...!
Wow, I'm agony as I sit here typing. My back is really killing me.
The weekend was very draining, physically and emotionally. We went to the funeral, and it was very sad. Also we drove over 1000km in just two days which was exhausting.
I can't say that the cortisone has helped me much. If anything, I feel worse. I am being plagued by Uhtoff syndrome again, which is where hot weather increases all ms symptoms ten-fold. Not much fun, as we seem to be experiencing a heat-wave.
Don't know what the next step will be in my treatment. The ABC drugs don't seem to work for me. What they do do is make my life lack any sort of quality. Don't want to go that route again!
I'll have to up the dosage of the cortisone again.
If that doesn't work, it'll probably have to be aggressive chemotherapy drugs.
Or plasmapheresis, which is where they take out some of your blood, fiddle with it (remove the anti-body containing plasma) and then put it back in. It's still pretty controversial as a treatment for ms. I don't know much about it.
I'm very annoyed at the low quality content of my life at the moment. And people don't seem to understand the overwhelming effort it takes for me to go anywhere/ do anything.
I guess you could say I feel a bit low.
Especially the pain is really wearing me down.
Not really worth crying about, as what will it help.
At least I have a very supportive husband, don't know what I'd do without him.
I think I'll order a (large) parcel from Kalahari to cheer me up a bit.
Why does life have to be so hard sometimes?
And why can't life be fair? I've never understood that one.
posted by Maggie at 1:18 pm
5 Comments:
We all have these valleys with MS ... keep your chin up. This too will pass. Have you considered Low Dose Novantrone (chemo) or Rebiff?
Oh, and Tysabri too.
Thanks, mdm.
I am considering the chemo. Have you any experience of it?
I've heard some bad press about the tysabri, like that it can cause certain cancers. Not too keen on that.
Tysabri keeps being released to the market and then withdrawn, renamed, and put back. I don't trust it! I don't trust pharmaceutical companies period though, so there's my final thought.
Keep your chin up, Maggie! You seem to hit peaks and valleys, so I fully expect your next post to be about how good you feel again. xo
I've not needed the chemo to date so, no ... no experience with it. Although, I've had family members go on chemo for other reasons and it's not a gentle treatment.
My heart goes out to you Maggie. All the time. I could see that you weren't feeling well this weekend and I thought it was so big of you to still go all the way to the funeral. I know I don't always say it but I do know how much of an effort it takes for you to do things - especially when you are thrown right into the midsts of an ms attack. I so wish I knew how to make things easier for you.
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