Hello everyone. I subscribed to this subreddit quite some time ago, but this is my first time posting, so I hope I follow all the rules. In keeping with standards, I am not here to garner sympathy or ask for donations in any way shape or form, directly or indirectly. I'm just hoping someone out there can relate.

If you're anything like me - and maybe you aren't, and that's okay - the medical portion of your life sometimes takes the form of a medical journey. This, to me, is an ongoing, lifelong effort that changes, ebbs, restarts, and otherwise develops as the fight for your health continues.

On August 29, 2017, after 13 years of searching, I was finally diagnosed with hypermobile Ehlers Danlos syndrome at 34 years old. Some local friends of mine were there with me, providing transportation and lunch that day, and they helped make it the best day of my entire life. I am so glad they were there to experience it with me. They were there to witness my dream coming true - all with no health insurance and no income. That was "Part I" of my medical journey.

I am currently in Part II. I already got the diagnosis, and now I am amassing as much medical evidence as I possibly can so that I will have a strong disability case. I am fully aware of just how much of a fight I have ahead of me, as this is my third time applying. I'm not afraid of the hell that still awaits me. I've done it all before. But sometimes, the progress of my medical journey is so agonizingly slow that its maddening.

Lately, I've been trying to see some specialists for my comorbidities, as well as get some medical records from my former mental health counselor. Getting those medical records has been a logistical nightmare, so I moved on to something else. I called my local hospital twice and got no return calls, so that idea was out. Then I decided to try primary care physicians. There are two in my area who offer discounts to uninsured patients - one just retired, and another requires that you submit complicated enrollment paperwork and only has openings once every two months.

From there, I decided to change my plan and look for a new primary care doctor and pay for everything out of pocket with GoFundMe donations. After some research, I found a doctor who seemed promising. At the appointment later that week, he treated me for bronchitis and referred me to GI (to test for gastroparesis), referred me to cardiology (to test me for POTS and dysautonomia), and promised to look into getting me blood tests for CVID and PCOS.

I am also going to try and get a letter from a former boss who hired me for 2 or 3 hours of work per week. I thought I could do it since it was just a small freelance job, but I couldn't. His letter, which will explain why i wasn't able to do my job. will hopefully provide even more evidence for my case.

So after that was all said and done, I felt so happy and productive. I felt like everything was finally on the right track and progressing the way it needed to. It felt so . . . doable.

And then everything just tanked. Despite paying for everything in cash, I just got a bill for $672. I could practically hear that record scratch to a halt. It just threw me off, and now everything feels like it has plateaued. Everything feels awful and out of control again. I still have bronchitis after 3 weeks, I owe my new doctor $672, which is a scary chunk of my donation money, and I've done everything there is to do right now. All I can do now is wait, and I can't stand that feeling. It feels so out of control, because all I want to do is make every effort to regain control of my life.

I hope someone out there can relate to this in some way. As weird as it might sound, waiting and being helplessly stagnant is so miserable! It seems like I'm always waiting for something. Waiting on appointments, waiting on phone calls, waiting on test results . . . biding my time until this thing or that thing happens. And no matter where I am in my medical journey, waiting and plateauing are always going to be a thing, and it never gets easier.

For those of you on a budget, how to you avoid going stir-crazy while your medical journey plateaus? I am not a patient person sometimes. Sigh.