Heidi’s Story

Site created on December 31, 2018


Hey! Glad you're here. This is a site so friends and family can keep updated about my health stuff in one place. I really appreciate your support and words of hope and encouragement.



Off an on throughout my life I've been sick with one thing after another.  Only in recent times did we learn why: Dysautonomia, Hashimoto's, Celiacs. An auto-immune fan fare. It has been a tough journey to get this far. The remission and relapse pattern of the worst bouts of symptoms has been more severe as time progresses. I did many things in every good moment I could and am proud of them. But I'd like to do more before the next major relapse. I would have never made it this far without the help of many different people (and their pets). This is me taking a leap to let more people in to be a part of battling this as a community instead of isolating. Maybe it'll make the difference in  enjoying rather than surviving life so I can make more art and give back in the best way I can.




Newest Update

Journal entry by Heidi Gaines

Maintaining hope is hard.

All I can see right now is a few days. And then what?

Afraid of what I can and can't do.

Struggling with deep hopelessness.

I have to move out by the end of the month. There are no shelters on the lists called over four hours across three counties that can take a person with my stupid rare illness in and disability specific ones have 3-5 year wait lists. Home is not a good place and I need out.

But know from past experience bouncing from temp situation to temp situation takes a drastic toll on my health. I've fought so hard to improve this far, I don't want to be more disabled again. Don't want to suffer so much again. I just want to work on my art career and move on with my life like a normal person.

What I don't want is to move into where anyone wants sex or a relationship. Can't trust myself to notice if a person is lying about their intentions. Or for them to change their minds about helping after finding out it's not like having a normal healthy roommate. Or for their life to change and they need to focus on their priorities and I need to figure something else out.

Actually what I want is to never have to move in with anyone again in this way. For stability. For a safe home I can be productive in.

I'm so tired. Days of talking, typing, searching, talking, typing, burning, aching, ringing, need rest so much. Struggling to eat. About to try some sweet snacks and milk. Getting harder to think clear. Hard to do anything but keep reaching out.

~H~
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