Still here

First off: Linda/The Road I Travel--could you please email me? I would very much like to know how you are and I can't any longer (read your updates). Thanks!

Thanks everyone for the thoughts, prayers, and thought-provoking points left as comments to my last post.

Obviously I am still here. I admit, I am struggling. If it was any ONE problem I was dealing with, it would one thing. Dealing with...dozens...is another entirely. My life being taken over by so many seizures a day is ridiculous, with the unbelievable pain it is causing.

My pain scale norm, pre-seizure disorder, was around 7 on good days and 9 on bad. Now, I'm 9 on good days. I'll leave it at that.

It took me 2 hours to stand yesterday to get myself to the restroom. When I finally made it there and sat, I screamed out in pain.

If you know me, you know very well I pride myself on keeping pain to myself. And I actually shouted...me, who had an emergency c-section with no drugs and never made a sound. Not a cry, a shout, a whimper, nothing.

Fortunately I got my scooter back in the afternoon so I can ride down the hall next time.

The pain is just overwhelming still, and it doesn't help knowing that this rare combo has no future, so what is the point in holding on?

I don't know. I don't have any answers. I just wanted to let the kind folks who wrote know that I'm still here and hanging on. It's by a thread at the moment but I'm doing the best I can.

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?