Hi all, this is David (Eva’s spouse) with a guest post.
In response to recent posts, we’ve been getting so many offers of help. We’ve received so many suggestions. And we’ve very much appreciated everyone who is trying to make our lives better.
We have politely declined most offers because we have mainly got things running about as well as we can for us. Eva’s blog is fundamentally a way to keep those who care about us informed. We so appreciate well wishes, sympathy, etc.
Here’s why helping us is hard: gastroparesis is a rare disease. No one knows much about it. Those who suffer from it know a fair amount about their experience of it, but that also varies widely from individual to individual. With rare exceptions, doctors who list expertise in gastroparesis have read less of the academic literature on the subject than Eva, or have expertise in treatments for which Eva is not a candidate.
People have offered to make phone calls for us to interface with insurance companies, etc. The amount of education we would need to do to get you up to speed is impractical. For the most part, even I, David, can’t make those calls for Eva. Yes, I have been present for most of Eva’s doctors appointments. I have heard most of the calls with the home health provider. But not all of them. There are important gaps in my knowledge that mean I am likely to give bad information, possibly setting the whole process back weeks or months.
Finally, we are exhausted. We don’t have the energy to explain why your suggestions won’t work, much less to argue you out of them. We love you, and so appreciate your caring, but some of that caring is placing a burden on us. Gastroparesis is an incurable, long-haul, (usually) non-fatal disease. We are not despondent, but one or both of us winds up in tears multiple times per week. This is really hard. When someone asks me, “How is Eva?” the best I can say is, “not as bad as she might be.” Which led someone yesterday to suggest that she is okay. I had to explain that she was definitely not okay, but it could be worse than it is (and it has been worse in the last week). We know you love us and want to help. If there were things we could ask of you, we would (Eva asked a friend to design a t-shirt for her this morning). But we are really stretched to our emotional limits just getting each other through each day. We don’t have the energy to take care of anyone else trying to take care of us.
So much love to you both 💖💖