Just about one year ago, I started a blog under this name to raise awareness for Dysautonomia. I was really passionate about it at the time, because I was also using it as a tool to raise money for me to have procedure done that was – in my mind – suppose to “fix” me. It didn’t. The procedure didn’t make me feel better, and I wasn’t in the mood to write about it. So I deleted the blog.
Not being fixed by the only solution out there right now was highly discouraging. I never really talked about it or expressed how it made me feel. I just powered through, living life and avoiding the topic. Truthfully, it was heartbreaking. It is heartbreaking. I feel utterly broken and now I know, I’m completely unfixable.
But that’s not the worst thing I was feeling. Feeling unfixable is hard, but it’s not new. I felt really guilty. The procedure costs a lot of money and we had to do a lot of fundraising. We got incredibly generous donations from family members, friends, co-workers, and strangers. It’s really hard to ask for money. It’s even harder to live with the guilt after realizing all that money was wasted.
I have been swimming in guilt for months. I’ve definitely been getting worse, and with every downturn in health, I fell deeper into shame. It took a lot of conversation for it to be made clear to me that I shouldn’t feel guilty, and that those who gave knew the chances of it not working out. They gave because they knew what I knew – I couldn’t not try it.
I couldn’t write the blog anymore, because it’s hard for me to be this vulnerable. It’s hard to be transparent about the pain I try to hide. But I’ve always wanted to help people, and my husband convinced me that this blog just might be a way to reach someone. So I’ve rebooted it.
I hope you enjoy it, and I hope you find it helpful.