Thursday, July 22, 2010

Day 16: Maybe the start of something new?

As you know, my azygous vein got the Olympic gold medal for having 5, yes that's FIVE, stenoses, each requiring a rather uncomfortable ballooning. Well, the azygous drains the spinal column back to the heart, so if my neuro's hunch is correct and I have mostly spinal lesions and spinal symptoms, I should see some improvement in bladder and bowel.

Or at least I think (and hope) so. Eventually.

A few people (Landon, my mother) keep asking about my bladder. They don't mention the other (most people don't talk about it anyway, even if there's nothing wrong). So, here's my answer to them (and you):

I have been using intermittent self-catheterization for my bladder since about 2004. After a few months of disasterous encounters with bladder infections, I switched to using a catheter on every trip to the bathroom instead of just morning and night. That stopped the infections, for the most part, which is ironic -- I needed to use a catheter MORE in order to stop the infections (I am now a pro -- talk to me about it if you have questions).

I loved the freedom self-catheterization brought me. Instead of getting up 15 or more times a night and racing to find a bathroom everywhere I went, I could now control when I went and could sleep in peace. This satisfaction with the process continues to this day -- I am very comfortable using a catheter and managing my retentive bladder that way.

So...when something started a few days ago I wasn't thinking improvement. But it's been a few days and it's still happening so I thought I would mention it. I usually catheterize 100% of the way, i.e., my bladder just sits there and does nothing to help as I use a catheter to empty it. But, in the past 3 days, when I sit down and start assembling my supplies to catetherize, a little trickle comes out all on its own. Maybe only 50mL or so, but that's still something. Or is it?

And I think the volume escaping before I can get to doing it artificially is increasing. It's maybe 100mL or more now. That's beginning to look like I should start measuring this and tracking progress.

But I won't do that until I know it's something...for sure.

~Sandra

1 comment:

  1. Sandra,
    I have major issues with my bladder and bowels. I won't go into details on the other but my bladder is my #1 enemy :( The only option I have is meds. I take to 2 different types 2 times per day. My urologist is quite amazed I can handle the doses I take! If I had my way I would take more! I wonder if I had no meds I probably would be on that toilet all day. Any whooooo .... because of these meds I have been loosing my teeth over the years as a matter of fact I will loose #7 in August :( I am Stage 3 CCSVI (formerly known as spms) and have a chair stuck to my butt. I am so hoping I will have relief of this most worrisome issue. I was dx Jan. 1990 and have been in my chair going on year #9. I am also fortunate to have an appointment in New York September 15th !!! I am anxious on how you do with this issue and I hope I can follow with success too. I just found about your blog today so I have some catching up to do! I love your writing and will be looking forward to many more.
    Take care.
    Shirley
    XOXO

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