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I had a phone appointment with the doctor today and for the first time in a long time it was all good news. Starting tomorrow I can begin tapering off of the medication I have been on the longest and which has done the least for me and next month I can start tapering off of the mild steroid I was put on. By summer I’ll just be taking supplements and going for half hour infusions every other month. It’s a dream come!

Less than six months ago I was worried about how close I was to surgery and losing my colon forever. I was worried about more medications being added and never getting out of the painful flare I was in. I was feeling so down and hopeless, but I’ve got an awesome support team and a body that is always frustrating me but is always fighting to heal the best it can.

On the flip side, I also had to make a series of phone calls to the financial department and the drug company’s patient assistance program to try to work out paperwork problems and payment delays. I’m lucky to be getting help to handle the infusions costs which are thousands of dollars each but the stress of submitting proper forms and making sure the two sides speak and knowing that if something goes wrong, I will be the one held financially responsible is incredibly stressful, and I’m supposed to be watching my stress levels.

I spent the rest of the day in the “creativity room”. I was supposed to be cleaning but spent the time writing instead. That’s a nice change from the norm and feels like a good sign of progress. Perhaps that is the key after all, using writing to procrastinate when I have other things to do rather than doing everything, anything, else rather than writing.

Published by

Lisa Marie Blair

Painfully aware. Profoundly afraid. Perpetually falling in and out of love with humanity. She/They.

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