stuck sitting still

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stuck sitting still

Postby heave2468 » Wed May 08, 2019 12:06 am

Hi all, I'm a relatively new CCM family member.

And by that I mean a 30-something, familial, 3 CCM having, 1 of 2 daughters, product of a spicy Hispanic women who is currently afraid that talking to her daughter about this topic will make me hate her forever.

This disease has, literally, create a cavern between my family, and myself and my partner. He's amazing, he's a gift from idk where but its a magically location devoid of human weakness 'cause even when he is tired and feeling selfish he can still step outside himself and support me. love me.

the struggle is with everything else.

I had a bleed. But before that I had a job. A career. Creative Director. New York City. a bad A#$ women with an overwhelming amount of skills and a whip sharp mind. Then, I had to go home for Christmas one year, and came back a totally different person.

No one told me I had a 50% chance of having a golf ball in my cerebellum. And a roll of quarters in my temporal lobe. Or, the 16 other, 1mm sized spots scattered throughout my brain including my pons. Leaky pipes.

I didn't know that in my 30's, I might have to stop kicking A#$ and start taking care of myself, this wasn't a skill I was prepared to develop. At least until I was older and like, running the company....but that didn't happen.

I got in the car in 2016 to drive to the US midwest to visit my family and immediately got motion sickness. A surprise since when we began dating it was over car events and driving the back roads of Kentucky....Now I'm watching re-runs of Lucifer 'cause I can't ride in the car across the street without getting a Migraine.

Finally got a doctor last week, to admit a headache and a CCM are related. took a while, and, 'cause they don't always believe you are having symptoms if they don't see a change in measurable size on the MRI, had to do the run-around to who knows how many professionals, to double check my ears and my eyes. But now they think it is coming back.

The golf ball.

it's not big enough yet to threaten my ability sign my name but, definitely stopping me from enjoying the few activities I have carved out that I love. Now I have a job, barely. not a career. I at least wanted to have a hobby I could commit to, turns out I have begun letting people down there as well.

My honey tells me to hang on, "this too shall pass" and such.

Mostly, what gets me through is the singular thought that I have had my whole life, "I refuse". To give in, to give up, to have less than what I have always wanted for myself and for those I love.

But, mostly:

How do I adjust my life? my expectations of myself? I run out of spoons sooner than I thought possibly....

How do I make peace with the past as, "the past"? Something that will not happen again?

How do I communicate with my family, when they seem to be too scared to connect with me?

I want to be positive? I want to leave a mark? But with this disease I feel temporary. I want to matter.

I have so many un-answered thoughts and questions and no peers to discuss these things with.

So Hello. My name is Leslie. I have Cavernomas and I struggle.
Posts: 2
Joined: Tue May 07, 2019 11:03 pm

Re: stuck sitting still

Postby darlamm » Sat May 18, 2019 2:40 am

Hi Leslie, I'm sorry you're struggling and I wanted to let you know you're not alone. I know the family stuff can get really complicated with an inherited disease. We have the CCM2 variant in my family and I passed it on to both my children, and my father passed it on to me.

Running out of spoons is a tricky problem, surround yourself with people who get it, take breaks when you need to, and don't beat yourself up if you're short spoons, it will happen. Getting enough rest, fluids and good nutrition can gain you a couple of spoons so make sure you're taking care of yourself!
Posts: 5
Joined: Fri May 17, 2019 4:21 pm

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