I was close to giving up, then a spark of hope

I don't remember ever crying in a doctor's office before yesterday. The tears started before he even entered the room.

All I could think about is how miserable I've been feeling.

• How much it took physically to get there (even with Cath driving), and how I've been without helpful pain management for 3 months.

• How I haven't been able to sleep enough, even though I've been basically bed-bound for a month.

• How the doc responsible for managing my pain has been jerking me around and ignoring my suggestions about considering the Ehlers-Danlos (hEDS) as a cause for this pain.

When he came in and asked why I was crying, I told him it's because I'm running out of hope, and if he sends me away without help I don't know how much longer I could hold on.

I know he was following procedure by next asking if I had a plan to self-harm and if I had a psychiatrist.

I snapped back, "If someone with diabetes was feeling sick you'd give them insulin not a referral to a psychiatrist. The problem is the pain, NOT my attitude!"

I assured him that if someone with my skillset was struggling, it was a big deal. Getting my pain managed was the problem he needed to focus on.

When we were able to get down to business. I shared my frustration with the other doc's lack of interest in exploring the potential of hypermobile sacro-illiac joints (caused by hEDS) as a cause for a lot of the pain.

I hope you're sitting down for this next part.

He shared he attended a lecture, literally two weeks ago, about a surgical technique for stabilizing hyper-mobile SI joints.

Before that lecture, he hadn't heard about any of it in all his years in neurology. WTAF!!!

He seemed to take my concerns seriously, changed up my meds and referred me to a few new docs - each very well versed in hEDS, and one surprisingly only a 30-40 min drive from me.

I'm home now resting. Took a few meds and taking the rest of the day to be as present as possible.

I want to thank everyone here and behind the scenes for all the support in helping me through all this.

I just want to feel better.

This morning

The pain is significantly better this morning - its a 1-2 when its usually 7-9, and I slept nearly 8 hours when I have been sleeping less than 5 or 6.

We can get so used to masking our pain, that those around us don't get an appreciation for just how awful we feel. Until we reach a breaking point.

I wonder if I would've gotten relief sooner, if I'd allowed the pain to show. But that's one hell of a vulnerable ask for many folks, when history shows your experience with be minimized and dismissed - who knows?

My Neurologist mentioned he usually isn't in on this day, but came in after learning how much I was going through.

He was able to spend over an hour with me (unheard of in the U.S.).

Our system needs to become patient-focused versus profit-focused at the expense of patient-care - then we may see fewer people like me.

Moving through life, doing our damndest to contribute, but struggling against pain that can actually be managed.

The system puts too many roadblocks in the way.

I don't know the solution, but I'd love to be part of the discussion to help find one.?