Sunday, January 31, 2010


I read a lot of inspirational stuff, and...I honestly try to inhabit each moment in my day fully, peacefully and with an abundance of gratitude, but this week I've been stuck.  

I feel trapped by my body; trapped by my cells; trapped by my environment; trapped...period.  It's hard to breathe when you feel this way.    I feel so trapped that I don't even have anything insightful to write about feeling trapped.

I know what I want, and it isn't THIS.

I want to be well.
I want to wake up every morning knowing it's gonna be ok.
I want to never have to call an ambulance ever again.
I want to be able to go out with ffamily/friends and not have to worry about someone's perfume or a piece of dust potentially hurting/killing me.
I want to drive a car.
I want to be able to take myself out for breakfast on a Sunday morning.
I want to never feel those all over 'body migraines'.  Pain sucks.
I want to sleep peacefully, without pain, anxiety or restlessness.
I want to never feel like a bear or 10 tonne boulder is sitting on my chest.
I want to be itchy free.
I want to be full of abundant energy.
I want my tongue never to know what tingling or swelling is.
I want to go a whole week without vomitting and gut pain.
I want my children to have their Mother back, in ALL capacities.
I want my husband to have his Wife back.
I want never to need this kind of cocktail of drugs just to keep me out of hospital.
I want white skin that never blotches or flushes.
I want to travel.
I want to take a bus, train or plane without fear of anaphylaxis.
I want to deal with paperwork that has nothing to do with ME and this failing body.
I want to be able to breathe all day, every day, without restriction.
I want to feel useful.

And the biggest 'want' that ALL people with Mast Cell Disease or Systemic Mastocytosis want...I want the old 'me' back, or some of it.  And I want to stop wanting that because it can't be healthy, productive or useful.

I want to stop resenting people with 'normal' lives. It's the simple things that you miss when you lose them...

I want to stop explaining myself to people.  Explaining Masto is exhausting.  My God, there are soooooo many other beautiful things to talk about and think about.

And, finally, I want to be free.  

Stuck is a lonesome place to be.  And in the middle of nowhere, with no driver's license and nowhere to go (and invites that you can't go to because they are high risk & your body isn't co operating)...well, it's hard to see the beauty in that, despite my best efforts.

See...stuck.  The roller coaster of Masto...up, down, up, down, up, down....


Johanna said...

I'm sending many hugs. I wish we lived next door to each other. Having someone who understands, really understands, is so important. This internet is a great tool, but sometimes it would be nice to be in the same room with someone who truly understands what it's like to suffer from such a rare disease.

Since my hysterectomy, the severe symptoms have subsided, but new ones have surfaced. It's a scary road we are traveling. At least we're not totally alone!

Your daughter is awesome, by the way. I loved your previous blog to this. What a blessing she is to you!

Kevin said...


This is so me! Lately I’ve taken some trips knowing if I get sick I’m going to be in a heck of a fix. I’m so tired of living in an egg shell. I wish people knew how badly I wish I could have my old life back when I was well. I’m so sick of always being SICK!

Love reading your blog, also I like the music ;)