Tuesday, February 24, 2009

Feeling Off

Not feeling so hot today. That'll teach me to have a sip of alcohol. I've been flushing on and off since (two nights ago), stomach distress and today, I feel like someone has taken a mallet to my body as well as sucked the life right out of me. Obviously a sip is too much.

Add to this that I've started on Ketotifen. Have to start at low dose, and increase gradually over a few days. So, yesterday afternoon was the first step up...so, not sure if my malaise/fatigue is due to the increase. Hopefully, it will even out soon. Ketotifen is a mast cell stabilizer and an H1 histamine inhibitor. I read yesterday, on Masto Mama's website, that her little guy is in need of this medication but that it's not available in the USA yet. I spent a good chunk of my night last night trying to think of ways to get it to her. Haven't come up with anything solid yet. She asks if anyone knows of good sources in the USA, to please let her know. Her blog link is in the top right hand corner of this page.

Also, my friend Dawn, in the USA, has been denied her social security claim. This is a huge blow to the little bit of hope that we Masto folks need to have. IF anyone is USA side, or even Canadian side, and has been awarded either Social Security or CPP Long Term Disability based on your Mastocytosis case, PLEASE email me: gypsyprincessa@hotmail.com, so we can help Dawn. I would like to put together a comprehensive list of arguments as to WHY this is vital, needed, deserved and necessary. Please share your story with me. Whoever is adjudicating her case obviously has NO IDEA what it's like living like this. I went through similar trials with my latex allergy claim (before we knew about Mastocytosis...either way, EVERY doctor I have encountered agrees that I need to be on Disability.) Dawn has tried every which way to remain 'functional' but this disease has got her beaten, and now the security system that should be there to protect her in such situations, isn't. I would say her Masto is far more aggressive than mine, and mine is bad.

Anyway, feeling like this means that I need to take it easy today. Maybe moving ALL the living room furniture, piano and tables around yesterday, and cleaning up the contractor's drywall carnage was a bad idea? The living room looks great though. The window guy should be by today to finish up framing out and trimming the three windows and door. It's a different world in my living room. However, after my bath (in a tote box...long story), I will be snuggled down in the family room with my Adult Education Theory books, putting together my next assignment. And napping.

For those living with Masto., or those loving those with Masto., and those living with deadly allergies, my thoughts and warm are with you today. Be safe out there...

1 comment:

Anonymous said...

USA residents import Ketotifen from Canada, UK or Mexico. Personally, I wouldn't trust the Mexico source.

Can be ordered from Rxnorth for USA residents. (RXnorth now CanadaDrugs)
Site link here:- http://www.canadadrugs.com/

Carrie :-)
Masto Canada Support