Following a difficult night, this was a productive Monday.
Last night, we had some…oh…call it family drama. I have to try to remember that this situation affects more than just me and my husband, and not everybody is going to have contributions that are helpful all the time or understand exactly what we’re going though. Hell, I’m not sure I even understand it completely just yet. It was stressful, and I really felt it…like, physically felt it. That was scary. And I didn’t sleep well.
But I’m good now. I just need to make sure to try to avoid stuff like that for the time being.
This morning, I heard from the good folks (and I mean that literally) at Brigham and Women’s. I have an appointment with Dr. Desai there on October 16. As far as I can tell, he’s about the best in the world at treating what’s wrong with me, down to having published papers specifically about inherited cardiomyopathy in people with T1 diabetes. That’s pretty specific, and so I’m confident he’s the right person to see.
The people in his office (Jason and Jen) were terrific. I needed to get the records from my hospital stay sent up there, including an electronic copy of my echocardiogram, so we went back to the hospital and rustled those up, with minimal hassle. Now they’re en route to Boston.
Of course I looked through the records before I sent them. That wasn’t perhaps the best idea. Seeing it all in black and white was somewhat sobering.
So I did some work this afternoon, and I feel better now having taken control of some things that I actually can control.
Thank you so much for all your kind, thoughtful, helpful, and funny comments and messages. Sometimes I’ve wondered when leaving messages like them whether they’re actually helpful. Now I know for absolute certain that they are.
My uncle has inherited hypertrophic cardiomyopathy. Is that what you have?
Um, it’s definitely inherited, but not sure about hypertrophic. I’m sure it was in the medical reports, but I didn;t pay close enough attention after I read the part that translated in my head to “there’s a valve in your heart that’s farting.” (It used a medical term, but I understood it as farting. I’m so 5 years old.)
FABULOUS!!! Nice job! Nice hustle. I’m so very proud of you Erin!!!
I’m so glad you feel you are partly in control of this situation. You’ve done great research and you are working it. That’s so fricking important!
Now. De stress as much as you can. Take a few minutes every few hours to just sit and do some slow deep breathing. Serious.
Sending love and hugs and mega support. What can I do for you?
xoxo
You should have seen me marching into Medical Records…armed with what you’d told me, I was on a mission! Turned out the woman was super helpful and nice, but I was ready for anything 🙂
If your heart valve is farting maybe you just need to tell it to eat fewer beans!! I, too, can claim toddlerhood. Seriously though, I’m so sorry this is happening to you. If you ever need to decompress, I recommend watching Whose line is it anyway? That’s helped my family deal with health crises.
I think we always did have similar senses of humor 🙂
And that’s a great idea! I think it’s on Netflix…or Amazon…I remember seeing it listed somewhere!
Proactivity! All the best on this journey. In other news, i almost Isadora Duncaned myself when necklace got caught on blose button. Living alone is scary. ..
Oh no!! You need to be careful. Or come live with us 🙂
I’m so glad you’ll be seeing the Boston doctor.
Excellent outcome! I love that the process is moving along so nicely. I’ll keep sending good vibes.
Thanks for the update. I visualize you happy and well. 🙂
Good luck on the trip to Boston! So glad you found the best and feel better soon. Thinking of you.
Darlin’, I had hypertrophic cardiomyopathy; so I imagine you have the same problem. Also, your uncle had that same problem. Much love, Dad.
That sounds much better than “my heart valve is farting.” But the farting is still funnier.
Erin, just became aware of your health issues. Please know I’m thinking about you and can’t wait to give you a hug (if that’s permitted) at Bcon. You are so much more together than I would be in your situation. Well managed, sweetie! See you soon.
Thank you! And hugs are very much permitted…encouraged, even!