My Very Own Personal Chronic Illness

You can't really know me without knowing that I've been dealing with debilitating health issues mostly beginning as I turned 17.

Yes it has been super hard so many times and I've had to make my own way to survive. My biological parents struggled with similar genetic health problems but were not able to find the tools I have, and both died as a result of harmful self-medication practices.

Their lives and deaths kept me determined to figure out what was wrong with me and find some way to make a difference in the world.

And I did.

I have so much to share about my path and how others can find relief from suffering as well, but I am still figuring out how to blog, so please stick with me here.

For now, I will address the most common question I get, "what is your specific chronic illness?"

People ask that often so they can categorize it in some way or try to relate, and that is such a natural reaction. I so wish it were easy enough to explain in a category or way to relate, but it's just fucking complicated.

I've been diagnosed with almost more conditions than I can count over the years with numbers of symptoms to match, but the basic sum of it is excruciating fatigue. Being beyond tired so that functioning is not a possibility and everything hurts, and eating hurts, and any food went right through my system in 20 minutes. At this time, my biggest dream in life was to be able to lie in a hospital bed forever with a feeding tube and morphine.

And of course, for so long doctors said I was totally fine. General blood tests look good, I look good (on my good days that I could make it into the office), and oh yeah, I'm a woman.

I'm trailing off here, let's save that. Back to my actual condition.

I got a lot of relief with a self-diagnosis of Celiac disease (story to come) at the age of 27, after a decade of feeling like I was dying sprinkled with actually wanting to die. My chihuahua Katinka and the philosophy of yoga got me through many dark times, and now there was a real light of possible good health I could see ahead of me with totally changing my diet.

That was a huge overhaul at the time that I take for granted now, but I had never even used an oven or cooked my own chicken at age 27. Amazing the things you can do though when your life depends on it!

So with that I say that my health went, on a scale of 1 poorest to 100 highest, from about a 3 to a 50, and that was a huge improvement I was feeling incredibly grateful for. And I stayed at 50 for a few years, before realizing that there was probably more because I was still pretty sick a few days out of most weeks.

It was through more work and doctors and personal research and trail & error that I've now gotten myself up to about a 90-95 point health level on my made-up scale. I still don't have an exact name for my condition, but the most important thing is I do know how to treat it. There is a genetic component as far as diminished enzyme production making many necessary chemical reactions throughout the body happen at a much slower rate than normal and a deficit in my urea cycle leading to increased ammonia levels in the blood.

I have to supplement my methylfolate enzyme production by taking 5mgs of 5-MTHF in the morning and again at 3pm & also 3g of the amino acid L-Citrulline mornings and 3pm every day, and I will feel it if I miss a dose. I still have to be very careful with what I eat as I am healing a lot of gut damage that led to many food sensitivities beyond gluten and dairy.

Hope this bit about my health was informative and possibly helpful in some way.

I am always down for questions. I will certainly be writing more about this in the future, so I'm happy to address anything specific in more detail, just reach out and let me know.