Ideas for chronic health condition worry

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 it.

Post Edited (astroman) : 8/11/2023 12:49:17 PM (GMT-8)

Are you going to any type of mental health therapy or seeing a psychiatrist? I would figure therapy could help you to live with your diagnosis and deal with what comes at you with auto immune. I like Lynnwood's post to basically do the best you can. You need to go easy on yourself at this time.

I hope you feel better.

Hugs, Karen...

Astroman, a psychiatrist can prescribe medication if it is needed, a psychologist is talk therapy only.

Thankfully, this disease is not as lethal as it was just 20 years ago. The treatment early made a breakthrough about 15 years ago, which is probably why along with the rarity of the need for this it’s so expensive.

So yeah, I could definitely use some help learning how to navigate this.

I’m surprised the immune clinic doesn’t provide coping resources for something like this vs “once you start treatment this might have to be every six months of your life for $10,000 at a time, we hope you retain good insurance, good luck …thanks bye.”

Hopefully, I will be able to work up until the time I am eligible for Medicare, (less than 10 years from now) and I hope, then that they certainly would help out with the cost of this.

I will keep on researching the Internet, though, as time goes on since that’s where the newest information appears versus in clinics where something that is 15 years old is new to them.

Hey, Astro, does anything here look useful?

National Organization for Rare Disorders
https://rarediseases.org

This is one of those resources I ran across many years ago and filed away in the back of my mind. Luckily, it's one of those pieces of information that I could actually still remember. I've forgotten so many others.

Hey, ol' buddy. I clicked on your name, so I could look back through some of your old posts and search for one that seemed relevant for a YouTube video I was going to share. But, after seeing your post here, I forgot about the video. I'm very sorry that you're going through this.

Hopefully, you know I think highly of you and I always enjoy reading your posts, whether they're Lyme-related or not. We've had many long and interesting (to me, anyway) exchanges over the years. Given we're also the same age and have some similar interests, your struggle is even more troubling to me.

If you will forgive me link-bombing you a bit more, I found some other resources. Some of these sites have a lot of good information, but you may have to dig around a bit to find it. But, if you do, you'll find links to even more websites and support resources.

https://ncats.nih.gov/engagement
https://rarediseases.info.nih.gov
https://www.rarediseasesnetwork.org
https://www.rareiscommunity.com
https://everylifefoundation.org

As for coping with things, one person I've found helpful is Eckhart Tolle. He has a YouTube channel, of course, and I also have a few of his audiobooks. Should you decide to listen to any of his lectures and find them helpful or even just mildly interesting, I'd be happy to share his audiobooks with you.

Another person I've heard about is Gabor Maté, MD. But, I've never read/listened to any of his books. I copied the following from Wikipedia:

Gabor Maté, MD is a Canadian physician and author. He has a background in family practice and a special interest in childhood development, trauma and potential lifelong impacts on physical and mental health including autoimmune disease, cancer, attention deficit hyperactivity disorder (ADHD), addictions and a wide range of other conditions.

Lastly, I have some knowledge and understanding of Stoicism, but it's very modest. Garzie has written about Stoicism and I think it's been helpful for him.

https://en.wikipedia.org/wiki/stoicism
https://fitmind.com/blog-collection/stoic-mindset
https://dailystoic.com/what-is-stoicism-a-definition-3-stoic-exercises-to-get-you-started

One thing that doesn't appeal to me personally is the "warrior" mindset or going to "battle" against my body or a disease. You've seen it on the Lyme forum, I'm sure...well-meaning people call members "Lyme warriors." That just really gets under my skin. But, to each their own. I just don't believe in trying to bomb my way to peace.

If you ever want to chat over e-mail or telephone, feel free to flag me down in a thread or just reply to one of my previous direct e-mails.

Wishing you the best, amigo.