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Life with a chronic illness isn't all about spoons and complaining.
About Me
- Bridget
- I've been living with a rare neoplastic disease called Systemic Mastocytosis for a few years now. I want to use this space to detail my experiences with this illness, as well as to hopefully show other people suffering chronic illness that life does not have to be all about the "spoon theory" and limitations.
Links of Interest & More
- The Mastocytosis Society
- Mast Cell Disorders Forum
- Dr. Castells - My main Masto Dr.
- Patient Info
- My Mastocytosis Facebook Page
- National Organization of Rare Disorders - Mastocytosis
- Dr. T.C. Theoharides
- Kevin's Masto Blog
- Another Masto Blog - Great Links
- A Chronic Dose - A Chronic Ilness Blog
- Chronic Babe
- Low Histamine Diet - I Follow This
- Google Results on Mastocytosis
5 comments:
Hey Bridget, thank you so much for doing this, and for all the other excellent posts you've made about this disease, both here and elsewhere. Yes indeed - we must not let mastocytosis define who we are!
Can't wait to see the video, but right now I am on dial-up so it will have to wait a week or so. Be well.
Thanks for sharing.. I think I really needed to hear that today! I am not sure what kind of masto I have, but had a biopsy and confirmed mastocytosis. urgh! Now what? How do I find out what kind? You don't have to answer, I am just venting. I am not going to let this define me.. but it does scare me hearing the way you have to carry all these meds.. I just deal with my misery, maybe I don't have to.. This is just freaking me out cuz after friggen 20+ years they finally figure it out.. so the way I have been feeling all these years, is it masto? or am I just kinda lame.. I feel crappy all the time.. sorry to whine.. just wanted to THANK YOU for posting.. I know you said you won't again..but it really helped me.
Hi Bridget
Thnx
(-:
LOVE your attitude and your take on masto.
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