Originally Posted by Sarah Mae

Thanks, Rae. I will take a look at that site as soon as I'm done posting this.

I'm hoping the pooling stops, but nobody is too optimistic about that. I don't remember if I told you that we found out where it is coming from--the POTS?

It's another condition I have (that they diagnosed at Mayo and didn't tell me about). I am on medicine to stop the other symptoms, and I go from 1 pill at night to 2 pills tonight... will work up to 4 each night and then go see my doctor again.

It's a type of steroid and most people are on it for life (if they have POTS). It is supposed to help with all the other symptoms, but doesn't usually do anything for the pooling. Unfortunately, that's a symptom that the pills just do not work for.

According to every doctor I've seen (4 or 5), the pooling is not anything to do with a circulation problem, and it does get much much worse when I am up out of bed and standing or walking. SO that doesn't give me much hope for that... but we'll see. Never know.. and it doesn't hurt to try!

But even if the pooling takes years to go away--or even if it never does, I'd still love the pain relief from the SCS. Even if I'm stuck in bed, being in less pain would mean that I can spend my energy on other things besides fighting the pain all day and night.

I'm volunteering with InterVarsity College Fellowship (I was involved in it all 6 years I was in college). I'm also working with a pastor at my church to start a ministry for people with illnesses/disabilites. So I have plenty to keep me busy--but I could do much more without all this pain.

Of course, I'm still hoping the pooling stops... but unless God takes it away, it probably won't happen. We'll see!

I'm excited about moving forward with this process, though... I just want to get going! =) <3