Urology Man

I called my Urology Man's office yesterday and they overbooked the schedule to get me in today due to the issue.

Long story short, the appointment was typical. Another day, another prescription, another test at the hospital. I can't say I'm surprised, unfortunately. I'll fill the script tomorrow while S and J are here. Uro Man warned me it lowers blood pressure so I don't want to be on my own, given my BP crashes anyway.

Things just basically suck. There was however one neat thing about the appointment. Urology Man (who knows more about Ehlers-Danlos than every doctor I have ever seen with the exception of TCI/NY) had trailing him a young woman who was a family practice medical student.

Uro Man, while documenting my situation on his laptop (and there was plenty of it given it's been 2 years since he did my bladder surgery), asked me to explain to the student about Chiari and EDS, the EDS especially. He told me, "I learned about it in medical school in New York but you have taught me the most."

I am really touched by that.

So, the two of us had a talk, and I am really grateful to have had the opportunity (though I wish I didn't need to have the unexpected appointment in the first place). She listened intently about the CM, EDS, and the connection between the two, etc.

The last thing I told her was I hope she will never have an EDS patient because, well, we're a mess.

When people back away

I am a fairly private person, don't like to feel I'm burdening others, or sound like I'm complaining. So, I have this blog, where I can just jabber away and not worry about it. When asked though, I don't have a problem talking about things.

There's been something long bothering me. While having CM/EDS and all the related secondary issues, surgeries are part of the territory. With the last several, I pretty much get shrugged off. People used to do a prayer with me beforehand. Not anymore. Now, when I send an update to them, I get messages back saying, "I thought the last would be it. What are you doing now?" Geez, sorry for having defective connective tissue that's breaking me down head to toe. I get sent off now, no laying of the hands, which gave me so much comfort.

I haven't been going to church the last...month? Two months? I lost count long ago. It's primarily because I'm in so much pain there's no way I could sit on one of those folding chairs for longer than 5 minutes now. But what saddens me terribly is being gone from a place that was so much a home, only to find out it doesn't seem to matter to them I'm not there. No calls, no emails, no drop-ins.

Would it be different if my disease had a household name, something everyone knows about? Would they understand then this time bomb that is eating us alive here, emotionally for some, literally for me. What happens to my family when I'm gone? Who will they lean on? Will the church folk think "Oh! I guess this was serious." Like all of this hasn't made that pretty clear?

Maybe they think because I've had so many surgeries that I'm just used to it. Well I'm not. No one gets used to that, not even after more than a dozen. I may act strong and brave but it's to try to keep myself calm and help my nerves.

So there it is. I know we're all dealing with things so there are no hard feelings. Some people I know may just not be ready to think about this, and too some just aren't interested and they have that right. Some can't take this. I'm the same way, but I never get a break from it.

A break. Wouldn't that be nice?