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New doctor. Hopeful. Looking back...

So I have a new primary doctor. I never really expect the doctors who take medicaid to actually help much, but I've found that they can at least help a bit with palliative care and some secondary issues. This one, a naturopath completing her residency, seems to be going above and beyond to tackle my case.

She sent me a message via their system. "I see you saw a gastroenterologist back in 2012, who felt that he couldn't properly evaluate you and the Mayo Clinic would be the best option. Did anything come of that?"

And I tell her plainly: "After that appointment I decided to stop seeking treatment. I switched to palliative care only."

...and waited to die.

I didn't add that last part.

We all thought I would die. I had bedsores all over from laying on bare wooden slats nearly all the time. I was extremely underweight and more so every day. I...can't even write about the rest yet. It's still too painful. My PTSD from those years is nowhere near manageable yet.

And now here I am, spending a lot of days symptom-free so long as I don't overdo. Casually informing my doctor that 5 years ago I officially gave up any hope of my life ever improving.

And that's when I found cranial osteopathy (NOT craniosacral therapy). I did it for symptomatic relief only. It made every fiber of my being feel like it had just yawned and was ready for a nap. It made it possible for me to rest deeply, more deeply than I ever had before. Not even in the years before I became sick.

And it made it possible to breathe much deeper than I ever had in my life. No more air hunger.

As I rested, and as I breathed, I began to heal.

Going back to mainstream doctors was hard. It took a lot of prodding from my therapist. I knew I'd hear all the usual bullshit. One of them dismissed my 8.5 years of being mostly bedridden as - get this - a mineral deficiency!!! She firmly believed it was impossible for anyone to be bedridden from CFS. It made me wonder why I even try.

But it's kinda like dating. Even though it's hard and discouraging, you can get lucky sometimes. I found the love of my life while I was on the streets struggling to survive. I found my osteopath through a series of the right people pointing me in the right directions. And I hope to find the right doctor to be my primary provider, who is willing to learn and help me out.

Today, I feel hopeful.

Comments

Good luck! I hope it can go easily. I'm glad you made it out of such terrible conditions and wish that things can keep improving in your life. The energy and outings involved in searching for suitable doctors can make it feel preferable to waste away than to be subject to what feels like torture any longer. But having a good one can really turn your outlook around (and hopefully make it possible to have good enough health to keep seeking treatments).
 
@David Jackson maybe it works that way for you, but that's not how it works for me. I'm very much back on my feet and I've been diagnosed with PTSD by multiple professionals. I experience flashbacks and night terrors. I get panic attacks just from not having anyone nearby who could theoretically help me through a crisis, even though I can take care of myself now. It is quite disabling. I know you had no intention to, but your statement of "you soon forget the hell you went through" COMPLETELY DISMISSES and HORRIBLY trivializes the reality of living with complex PTSD. You know the thing soldiers who've seen a lot of combat get? That's what I have. And if I ever do write that book, you'll understand why.
 
Dainty, I always find your posts/blogs so inspiring on so many levels and just wanted you to know. And that complex PTSD is very real (which of course you already know!) and hoping you will find the right clinician some day to help w/it. I think your potential is limitless and if you ever do write that book, I will definitely read it!
 

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