I’ll start off by admitting my first post was a little bit too long so I deleted that and started over. Edit, this one’s long, too!
Everybody at healing well has some sort of health issue that they probably worry about
. I’ve had a handful of things wrong with me and found the different parts of healing well to be quite useful, especially the Lyme disease forum , which is where I usually hang out.
I discovered five years ago that I have this chronic immune deficiency disease, which can be managed to some extent (but not stopped ( yet)although expensive, is not curable. Gene research and gene therapy seems to be the promising area with this in the near future. Just a few decades ago life expectancy after this diagnosis was only about
15 years, that has changed at least.
As of 2023, This still has the potential to affect many body systems, sometimes individual organs, infections can be lethal, and usually several autoimmune conditions come with it. It’s rare enough that there are no online forms for adults with this. And there are only face-to-face support groups for this in about
10 of the major cities in the United States. I’m not near those. there’s a few people talking about
this on Reddit, but Reddit is kind of a trash, talking toilet of online society, not too appealing.
Although it seems that I have only the beginning stages of this, it does add difficulty to daily life. The fear is the fact that well, from what I’ve read and heard, the writing is on the wall. I should be grateful for the fact that my symptoms are not that bad for how low my immuno globulin levels are. So I do have that going for me which might just be pure luck or the fact that I’m a very health-conscious person who tries to take care of myself the best I can.
This has the potential to definitely get out of financial control too. You absolutely have to have health insurance with this and I had hoped one point in time to slowly transition to part-time work as I get older. Well now that’s not a possibility because I need good health insurance which only comes with full-time employment. And paying for health insurance yourself is somewhat doable, if you don’t have a condition on their best to avoid list. This is, unfortunately on the list of expensive health conditions.
So there are those that say don’t worry about
tomorrow today… Enjoy the day you’re living in. yeah OK, but this is not something I can just ignore, how could you?
This is an unusual post, but there’s not a good place to post it. It would be nice if healing well had a rare diseases forum, but they don’t. So I have known about
this for five years, I can’t just seem to ignore it anymore.
This diagnosis has the potential to be a major life change. From what I’ve read, it usually is, but maybe I’ll luck out, who knows. Limited clinics, expensive medicine, limited other people with this (feeling alone with it ), and quality of life are the issues. There are many other bad conditions that are more treatable and easier to finance for those who live on their own. One of my siblings just said, don’t worry, well, they don’t have this condition lol. Easier said than done.
So I’m kind of overwhelmed. This can’t be ignored, but I don’t want to overthink it either. Other than take it one day at a time there’s really not much I can do. Some people don’t plan for the future. I don’t know how they sleep. I’m a planner, and a problem solver this is a major obstacle with limitations as to what I can do about
Post Edited (astroman) : 8/11/2023 12:49:17 PM (GMT-8)