Tuesday, January 1, 2013

just a little update

I always worry when I follow health based blogs that go silent, that the writer has died or their disease has progressed or some awful thing like that. because when you're dealing with a serious disease, those are the places your mind goes.

So not that I think people are sitting around all worried about me, but I just wanted to write this in case anyone was.

I'm not writing in my blog as much because I've found it to be unhealthy for me. When I first got sick this was a great sounding board for me to discuss my life and how much it had changed. But now it's been 6 years and I've remained relatively stable. I've undergone 2 surgeries with general anesthesia, and one with local. I moved across the country, the cat I had for 14 years died, I got a dog, I've gone through lots of massive life changes because of this disease and some massive life changes that had nothing to do with it.

Point being, I've adapted. I don't freak out when I flush or get hives or get tachycardia anymore. It's part of masto life. But if i sit down to write about "bridget as a person with mastocytosis" i have to sit down and think about having mastocytosis, and that really doesn't help me in either the present moment or in the long run.

So for now, I'm going to be quiet. but it's a good thing.


Foxxy One said...

You know... you don't HAVE to write about the negative shit. You can write about all the wonderful things going on in your life and how you are living life to the fullest, masto be damned (and post adorable puppy pictures). No rules that say a disease related blog has to be negative.

Just my two cents from a fan :)

Anonymous said...

Hi Bridget, I'm wondering if you are still in Santa Monica and if so, did you ever find a Masto doctor in the Los Angeles area? I believe I may have MCAS and I'm having a very tough time finding a doctor. I would appreciate any suggestions for docs if you have some! Thanks sunibeoaz@gmail.com

Anonymous said...

I am new to the 'wonderful world of Masto' (sarcasm intended - it's a shock and it's bewildering and I HATE it), but I just wanted to say that I totally 'get you' here. I cannot let this thing take any more of me than it already has, and I find the more 'space' I give the Masto. emotionally and mentally, the more it likes to take! I wish you well, and am so glad that you are stabilized!! That gives me real hope. Oh, and i'm in the UK btw, just thought i'd mention!

Anonymous said...

Hello, everyone. My husband was diagnosed of Masto last 2 months ago.It affects his doudenum and he has difficulty in sleeping. Can anyone help us what to do, so that my husband can sleep well. He's already taking temazepam for his insomnia but it's not helpin him. He's also taking loratadine, cimetidine and prilosec.
My husband has leukemia also. It's CMML-leukemnia but he's only 37 years old.
I would appreciated any suggestion.

Amanda Kasper said...

I know that you have not blogged in some time, but I'm hoping this comment still comes through to your inbox. I was recently diagnosed with Mastocytic enterocolitis (mast cell disaster in my GI tract, symptoms mimic Crohn's disease); and I found your blog. The quote you have as your subtitle really was something I needed to see, feel and hear today, and I just wanted to reach out and thank you, and tell you that you have touched my life.

Anonymous said...

hi - i've just spent the evening reading through your blog. i've really enjoyed your straight-forward, honest, intelligent, humorous approach to life. and i've gleaned a lot of information from you that i hadn't been able to find elsewhere or even know to ask about.

i've been sick for almost 25 years, and am awaiting what i think will finally be a masto or mcas diagnosis. you're smart about the process you went through - you gave yourself room to question and feel, and now are able to put masto in the backseat. i wish you the very best, and i hope you come along and blog some more - about whatever.

Anonymous said...

Hi all I've been living with mastocytosis for over 25 yrs. My condition is affected by heat, cold along with some foods (spicy) and aromas(smells).
Recently, I have found two herbs Quercetin along with Nettles helpful when I get a reaction. Although I realize that everyone is unique and have their own triggers. This is something you may want to try, but like anything else start out being cautious.

Lisa said...

I couldn't agree with this post more! I was just diagnosed and I know from my Breast cancer experience that dwelling on it positive or negative seemed to make larger than life. Thanks for the i coypu provided to date. I would be curious how the two general anesthia surgeries went as I have to have some follow up BC surgeries and am terrified, even though I just recently had two prior to my dx.