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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
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15 comments:
I have had at least 20 of them. Some are worse than others. Mostly pain down the leg during the procedure. it is nowhere near as bad as a colonostopy. You wil do fine. Do not let yourself get to anxious about this. its not that bad. you will be sore for several weeks. but probably nothing like you have had to deal with after your accident. some docs will give you concious sedation, if that is the case you have nothing to fear. If you are not going to be sedated take a pain reliver about an hour before the procedure and a seditive like zanex or valium if you have them but this is not necessary if you don't have them. The procedure will only take about 20 minutes. I know is sounds horrible but keep a positive attitude and do not let yourself get tense and you will do fine. The more relaxed you are the better it will be for you. I definately do not recomend sitting in a bath tub for several weeks as the hard surface can be very uncomfortable. Remember to relax and do some meditation during the biopsy. this will help. I will be thinking of you, i know you will do fine.
easy as.........I've had 3 and only slight discomfort, very tiny bit of pain. i think "Anonymous" sounds a little scary! i was up on my feet same day and cooking dinner for the family as usual. but I do agree with the positive attitude - but that applies to every challenge we face.
You will be fine.
claire.
I have had 5 of them; mi recommendation is “Play with your PSP during the procedure”. 4 of them were painful because I was focused in the procedure, but the last one, I play videogames with my PSP and I didn’t feel pain. Doctor was very surprised and told me that he will use a PSP in his new procedures, especially with kids.
Hi!
I'm in China, and very glad to find your blog by chance. I have a friend who also got this disease,systemic mastocytosis. But in China,this disease can't be treated,even in the most famous hospitals. We are anxious to find someone who can help him and provide some information about the medcine or how the patients are cured in your area.
I'm looking forward to receiving your reply as soon as possible. Would you please send the information to my email: ruirui.yu@eyou.com
Thanks a lot!
HELP
Careful with that last post Bridget......Dont trust it.....
Tony
tony,
what's the deal with not trusting the last post?
Anon, I love the psp idea.
If you have had legitimate correspondence with Grace I might have to wipe the egg off my face on this one but it was screaming DANGER WILL ROBINSON DANGER! to me....After many years of e-commerce Ive seen just about every trick in the book and this email raised red flags with me.A search of the address led to a merchant site that reports fraud/spam and that prompted my post.Afterwords I was unable to find the exact address among the zillions of revolving addresses listed so it is possible I'm being paranoid and jumped the gun on an innocent person.
Tony
I had my bone marrow biopsy in November, and I highly recommend some sort of relaxant- whatever you prefer and is ok with your doctor. The pain is bearable, but if I have to do it again, I will ask for a little pill to help me.
I found the pain intense that night, and was unhappy for several days after---tylenol helped, but did not get rid of all pain. I still have an ache when I bend over a certain way.
Good luck, and keep positive. Bring a book, music, anything if it helps.
Bridget,
At the University of China in Beijing they are doing research on the use of Cumerin to treat systemic mastocytosis. There are Doc's there in Beijing who are studying masto. It could be that Grace needs to be directed there or not. My husband travels China quite a bit in his job - he is a chemist and was in Beijing when an article was published about the use of cumerin in masto. Many of our U.S. masto patients have been trying cumerin. I haven't.
Let me know if you need aditional information on the Drs. in Beijing. I'm not sure what I can come up with, but I am certainly willing to try.
Oh, Bone Marrow Biopsy, I've had 4, they are unpleasant, but there are many things that are much worse, including minor dental procedures.
good luck!!! i'm sure you will be just fine! good thoughts coming your way :)
Hi Bridget,
I've had around 20-30 myself I've lost count. Honestly I take a Xanax before the precedure to help me relax. You'll feel pressure and then some sharp pain once they begin to pull. You'll be sore a few days unable to bathe for 48 hours. I just had another biopsy and aspiration done on 1/28/09. I wish you the best.
Kevin
Don't worry about it! My husband went with me and he was very nervous. When they were doing the procedure my husband looked so worried and it really wasn't so bad that I started laughing. The doctor thought I was crying. There was some weird electric feeling at one point but that was just odd. I don't even remember being that sore from it.
How did it go?? I'm facing this step shortly and I'm trying desperately to keep my anxiety in check (Klonopin is a Gd send!).
Thank you for writing this blog. It's helped me immensely!
SO have you got the results???
So....how did it go???? How are you feeling?????
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