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Another Year Gone By

Posted Sep 01 2010 6:22am
I know I have really slacked off on the blogging and for those of you eager to hear news about Fingolimod (now Gilenia) I do apologize.

Just know that "no news is good news" is the phrase du jour . My 3 year mark in the clinical trial was on August 20, 2010 - 12 days ago! It still amazes me that I have come so far and feel safe in saying my MS is in remission.

It took me SO LONG to get over the feeling that if I sneezed too hard or crossed my eyes, I'd send myself into a relapse. But before Fingolimod that was exactly the case. It didn't take much at all, even just a little stress, to send me into the land of numbness, burning, tingling and limbs I had to drag.

So I guess I am trying to ignore the fact that the trial is probably winding down, as is sure to happen. They have to wrap this up sometime and with the pending FDA review, I have tried to ignore the fact that I will soon have to figure out how to stay on this medication and maintain my good health.

It's crossed my mind on more than one occasion that maybe all the success I have had isn't TOTALLY attributable to FTY720 alone, but was partly brought about by quitting smoking and caffeine, and trying to make better food choices. This is a comforting idea to ponder because in my little pea brain it suggests that I have a fighting chance of staying in remission even without my drugs.

I think that keeping a positive attitude and having a new outlet for my creative energies has also helped to keep me stable. I just can't get enough of the tie-dyeing that my sister and I have started doing/selling . It's been a joy to have something so satisfyingly artistic to do after years of feeling frustrated that MS had taken my finest motor skills so that I no longer can do really detailed pen and ink drawings.

Tie-dye IS an artform, by gosh! And unlike drawings I may have started and got bored with or frustrated by, none of the tie-dye stuff sits around unfinished. I do them beginning to end with the untying being the most exciting part. It feels like Christmas morning every single time. Love to see the surprising designs of colors and patterns.

It's that exhilaration that keeps us doing it, and the fact that it keeps my mind from stagnating in a MS pondering funk is a great big plus. SELLING something would make me even more ecstatic but I guess that's too much to ask for ROFL.

I have another BIG clinical trial checkup coming soon but oddly I have not heard from my trial nurse in a while. Usually she calls a couple weeks before the appt. to confirm. For the past couple "anniversary" appointments, it's always been a big deal, with every single test performed from PFT to MRI -- all having to be completed within so many days (14 or 30 maybe?) of the anniversary date (8/20).

Counting my pills, I see I have 23 left and I already took today's, so I'm good for a few weeks anyhow.

Until then, I'll keep pretending to be normal and  revel in my new found creative outlet. Hopefully I'll have a more MS-y, clinical trial-ish post for you soon.
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