I sorta lost hope after the last new doctor, which was officially #28 but really #30 on the list. I had hoped she would be able to help me, or at least have some interest or curiosity to do so. But she was relieved, not challenged when I told her that 29 other doctors had failed before her. "At least I am not alone" was what she said.
And I wanted to scream at her: "But I AM!!!. I am totally alone in this and how many disbelieving and uncaring fecking doctors do I have to see before someone will actually come up with something?"
But I kept my mouth shut, instead settling for a stern raised-eyebrow-hard-stare combination.
I don't think anyone who hasn't lived something like this can really, truly understand how very alone and isolated one feels. Despite repeated arduous searches, I have not met one single person who seems to have symptoms which are related to mine.
I really started to despair. I started to wonder if maybe it really IS all in my head, and if so, I should just go to a shrink and get some Happy Pills (and hope for none of the hideous side-effects for which I am famous)? I didn't think Happy Pills would make the fits go away (because still in my heart of hearts I know the fits have a physiological basis), but maybe I would care about them less? Maybe the Happy Pills would somehow inure me to the awful horror of numerous potential seizures a day?
...For the rest of my life????
I even wrote an e-mail to my sister, expressing my doubts and saying I might as well give up. The next day, there was a mail in my inbox; something along the lines of "It is NOT all in your head. EDS III is causing your seizures."
And this e-mail wasn't from my sister! Intriguing...
I wondered briefly if the sender, who I didn't recognize, might be a nutjob? But then I read the message, and realized that the sender was a doctor; a real live educated in the USA doctor of medicine, (I checked!) who had happened across this blog and wanted to help me.
So that is how #29 came into my life out of left field -actually out of state (which is a bit of a shame!), and we have been in quite animated communication since then. She arrived in the nick of time, too -just when I was about to give up entirely.
I need to come up with a better name than "#29" so I have decided that this lady, who is engaged and genuinely curious to unravel the mystery that is OSM, Will be known as Dr Curious from hereon in. By "Curious", I mean someone who has curiosity -not someone who is a curiosity, although it could be argued by unkind people that a curious doctor is a curiosity in itself... But I don't wish to be unkind tonight.
...except I just was. (you can't always get what you want)
So Dr Curious has been reading old records, asking lots of questions and making some suggestions. She does have something of an ulterior motive. She has a relative who has similar symptoms to mine. By pooling our resources; i.e. combining my copious history of tests and failed treatments with her medical knowledge, we are hoping to find an answer for all of us.
So in one e-mail I discover that:
- I am not the only one. There is at least one other like me out there.
- There is a doctor out there who is genuinely interested in getting to the bottom of this and helping us.
It's amazing the difference a day makes. It truly is.