Wednesday, August 11, 2010

Dear Blindbeard

Dear Blindbeard,

Oh, Blindbeard...I hope your head/eye pain is receding. If it turns out to be a bout of optic neuritis, will you do a round of steroids? Be well...

Long time reader, first time comment leaver-


Dear Beautiful Lori,

I always said that the only way I would do the steroids again was if I lost my vision, so. . . yes? Wait, no. Definitely maybe! The steroids make me so sick and crazy that I'm afeared of doing them again. It is such a miserable experience for me; I worry about going off the deep end again, and I worry about the other hideous side effects. The horrible heartburn, the raging insomnia, the most disgusting taste in my mouth that nothing will get rid of, the insatiable appetite that makes me take jars of peanut butter and jugs of milk -- and I NEVER drink milk -- to bed with me. But then I remember when my hug first started up and how much pain I was in. I was ready to do the steroids then if it would give me any relief. So it's always a possibility. A possibility that I hope I never have to do, but pain and misery can drive a woman to actually listen to her neurologist, so I may give in to her and do them if I am feeling too bad. Ugh! I would rather order all my books in Braille than go through steroids again. It would probably be a heck of a lot cheaper.


Dear Blindbeard,

Big Fan! I've read your whole blog. I don't have MS, but I don't NOT have it either. ( I have the lesions and meet all the diagnostic criteria but have another disease that my doctor says "covers" MS as well) Anyway, I wanted to let you know that I like that your blog is not all MS all the time. Its refreshing to hear about all of the aspects of your life. When I first started getting sick and started reading other blogs I was worried sick(er) that my life was going to be miserable. You have helped me to be mostly positive (when I have the energy) and to concentrate on living my life and not just being sick.


Dear Beautiful Amy,

This is the best comment I have ever gotten! Sometimes I think that maybe nobody wants to hear about how, yesterday morning, the middle sized dog cleaned himself to completion on my pillow! I'm not saying that I never reach completion in my bed, but I don't do in on my pillow, right by a just-waking-up person's head! If I didn't know better, I would have thought he was having a seizure. I can't remember the last time I got out of bed so quickly. Or how Sugarbowl and Princess were fighting the other day, so Sugarbowl locked her computer so Princess couldn't use it and now she can't remember her password so she's locked out too. Or how I've been thinking of taking one of these adorable little toads that are all over the place and keeping him as a pet. I have already picked out the name, Toadly Winks, but am not sure the upkeep is worth having him/her. Or how this heat has made me melt into a pile of warm jello and my pit juice keeps running off like the 2 bit whore it is. One day I told Acorn that my pits felt like they had died and gone to hell. About 5 minutes later, I felt a tickle in my pit and a spider came dragging its way out, thankful to be alive but needing years of therapy to recover from the experience. These are all the little nothings that make up the part of my life that MS has nothing to do with, ie all the fun parts.



EJ said...

To echo Lori and Amy: When I got MS a few years ago, I subscribed to about a billion blogs on the topic. Yours is the only one that I read because it is the only one that I enjoy and share with my temporarily able friends.
Your way of seeing the world and writing it down is a gift, and I am so happy that you squander it on me.

Jen said...


Yours is still my absolute favorite. I skim others, but mainly to make sure my peeps are okay. But this one I just love from start to finish. If you told me a couple of years ago that I'd regularly read someone else's day-to-day life (MS and not), I'd of thought you were nuts. This discovery was a sheer accident, and I'm glad that it happened. If being a voyeur is wrong, then I don't wanna be right. ; )

A sloppy smooch for you..

Travelogue for the Universe said...

No question that steroids are a must to soothe optic neuritis and preserve vision. This has been studied. Reminder to self:Next time I need steroids, Get a valium prescrption, take a week off from work and have someone drive me that is wearing padding,ear protection and a helmet.I love reading your blog and respect and love your honesty.Mary