Friday, September 12, 2008

Making The Rounds

Update: Thanks, guys, for the comments and I am really sorry I didn't mention all the blogs I visited -- I can only blame my mucous filled head for being so slow. I am also going to check out all the blogs you suggested, can't say my presence will help them any, but I like to be a (athletic) supporter whenever I can. See you on your blogs soon!


Yesterday, while I was knocking on Death's door (okay, not really, but I sure felt like the bottom of an outhouse), I cruised around reading a bunch of different MS blogs and was impressed by the veritable plethora of different takes on having MS. All night last night, while panting through my mouth because my nostrils decided to seal themselves shut and practicing my cough, I thought about how different and myriad it all is. It makes me think of the old saying, "there's an ass for every saddle." Not that I am calling you an ass, more like myself, because your poise and integrity are legendary, but you know that already. I left comments where I had something to say, which I almost always do, but some I didn't because when I looked at the comments someone else already said what I was going to say. Today, while feeling a little bit better, I plan to snoop around even more. I believe it was Braincheese who said it is nice to leave our own blogs once in awhile and see how and what others are up to. So while I continue to marvel over how much nasty stuff a body can produce in a day, here are some of the things that struck me the most.

Fear and worry for the future.
I believe it was Ms. Denver Refasionista (sp?) that blogged about how she was worried about keeping up with her job and worry for the future. I'm not sure how long she has had MS, but it seems like she is somewhat new to it all, not that I am an old hand, sitting in a smoking jacket with a pipe and handing out advice, I'm only 3.5 years into it. But I agreed with a comment that the first 2 years are the hardest and I also agreed with the comment that they loved their antidepressant. I too love my antidepressants (I take 2 at maximum dosage because I am that kind of a crazy bitch). I forget how hard it was in the beginning sometimes and it is nice to be reminded of the horror of trying to figure out this disease and trying to figure out a future that can't be planned. I worried for a long time about what would happen to me -- too long. I wasted a lot of time with the what-ifs. Now I try to discard every thought that starts with the heinous what-if. When I was first diagnosed it came as a complete shock to me. I knew almost nothing about MS, had only heard of it in an off-hand way when my mom would talk about a resident in the nursing home she works in that had it. I started doing research on it when they suspected I had it (before the confirmation) and decided that I did not want it, thank you very much, you can keep it. After the confirmation (a dark day. I was so angry at the doctors etc. that I wouldn't talk to them, my husband had to answer questions for me, I would only turn away. I know that is ridiculous, but it was just the way I felt. Also, everyone wanted to hug me and I didn't want to be touched. I was very angry for a long time.) I wanted to know everything about the disease, the DMDs and such. I was under the impression that accumulating disability was a choice -- that if you ate right and exercised you could avoid it. Not sure where I got that idea from, think it was because everyone talked about taking care of myself and blah blah blah. I tried to read some MS magazines but they angered me so much by talking about it is such positive tones, and the only information on the DMDs were in the ads for them when I wanted to know the technical breakdown of them, ie the reduction rate for relapses, the side effects, etc. I tried a support group but the only information I could get was from the Rebif lady and she only knew about Rebif; there were no other representatives there so I didn't feel like I got the whole picture. All she could tell me was about the sharper needles, the rotation of injection sites, and what days you injected -- stuff I cared about not at all. I wanted to talk to someone who had a disease that came out of the blue and with a vengeance. Someone who had such an aggressive disease and was going downhill as fast as I was, but they were all older and had had MS for years, decades, eons, and were so blase about it my anger boiled even more. They cared more about what they were going to bring to the next potluck dinner/support group then anything else. Thus, my bad attitude was born. I made a solemn vow to the gods of potluck dinners that I was NOT ever going to be that way. I will never act like it is better than it is, and I WILL say what I think about it all, whether they want to hear it or not. So I don't always make BFFs when I go to such things -- but I don't care. I don't ever want to be in that category of MSers. That is also why I started my own blog. I didn't think too many people would care about what I had to say, but beaver's dam it all, I had to say it anyway. Okay, getting back on track. D.R. reminded me of the fire, anger and determination that spurs me on to do what I'm told I shouldn't do. The strength to say, "Yeah, I have MS, but I'm still going to do as I please, when I please and how I please whether others like it or not." If I want to wear my superhero costume to an MS walk, then I will. If someone is blathering on about the "gift" of MS (the quickest way to make my blood boil) I will tell them that I think is sucks to piss my pants in public, to walk like the world is lopsided, to have facial tics that make me make strange faces at inappropriate times; and why don't you hear people with Ulcerative Colitis babbling about the gift of UC? Or people who have bowel problems with their MS saying how great it is to have to strap a bucket on their ass to leave the house? (For the record, I have the "urgency" in both of those cases I just mentioned.) It was nice to be reminded of this -- maybe not for the public in general, but definitely for me.

The informative blog.
I was really impressed with these. You guys are so informed and smart and up-to-date on the latest news! A couple of examples of these are Lisa E.'s brassandivory.blogspot.com and living-with-ms.blogspot.com. It always impresses me that some people can have so many talents -- and makes me a little jealous. Their blogs are always good, informative, thought provoking and sometimes heart-rending. If I am too lazy to look into certain issues more closely, I can always count on them to have blogged about it and broken it down in terms easy to understand, and the cogs in my head are rusty and slow so that is a big compliment to them.

The "Its so funny because its too true!" blogs.
Ahhh, yes. I'm sure you know where I am going with this one: Good ol' Braincheese. When you are ready to laugh at the more ridiculous side of MS, she is the one to visit. Not only is she from the state I live in (Nebraska, and no I don't live in a corn field) but she and I seem to have the same sense of humor. And willingness to talk about the less pretty side of MS, which is always needed. She consults Dionne Warwick and I stick with Miss Cleo. She has the ability to make me laugh at things I never really gave much thought to, and we all need more laughter in our lives. I'm sure there are others out there, I just haven't stumbled upon them yet, but when I do I will gladly share what I get from them. Funny thing is, you probably know them all already. I'm always #2 and the last to get anything, but I am comfortable with that.

So keep blogging, my fellow bloggers, and know that I enjoy every take on every aspect of this disease. Even if I don't agree, I am always interested in how others' view this disease. Now I must go marvel over the things a sick body produces and hope we have enough Kleenexes in this house...

6 comments:

LISA EMRICH said...

Awww shucks there Blindy. I'd put your blog right up there in the "tell it like it is" with irreverent humor and honesty category.

And.... my MS is a gift ;-)

It has replaced my shyness and lack of confidence with a burning desire to tell folks "the truth" as I see it.

So I say - blog on my dear, blog on.

Jen said...

I agree. I love going to Nadja's (Denver's) blog because she is so honest and sincerely nice. And my mom was an ESL teacher, so when she talks about the strain of teaching, I can totally relate. I saw it with my mom every week night.

A really great depression site is Merely Me's, which can be accessed through her widget on her blog home page. She has my favorite writing style, because sometimes I can imagine her talking to me as I'm reading an article.

I don't get a lot of time to read the blogs, but I do occasionally stop at Brain Cheese's site, which usually makes me laugh.

Anne at "Disabled not Dead" is great, and I can imagine her talking to me also, especially when she gets emphatic and uses exclamation points!!!!! Love it.

These are off the top of my head. Lisa I enjoy because she is a leader and organizer of bloggers. Tough job. And you, Blindbeard, I enjoy because of your candor, defiance, and lovely writing style.

Everyone blog on!...

Jen

Denver Refashionista said...

Thanks for the mention and the perspective. I am an MS newbie. I was diagnosed in April and at first it was easy to put a smile on the disease but that's wearing thin as I try to work.

You are right about the what ifs. They don't help. It is hard not to think about them when I start every new week at work feeling like hell and wondering how I'm going to make it. The truth is, I need to focus on one day at a time or I won't make it.

You all may be right about the meds but I actually suspect that my angst is from an existential crisis, not a chemical imbalnace. Nevertheless, I could use the energy boost so time will tell.

I find all the social invites exhausting. While those things are suppossed to be fun, I am overwhelmed by just taking care of business while I feel crappy.

Weeble Girl said...

Okay, you didn't mention my blog but that's okay. I do enjoy the ones you mentioned and I stop by yours because you often make me laugh.

I've had MS since at least Dec. 2004 with a vengeance but not diagnosed until Dec. 2005. I read DR's blog often because I am a teacher also and know the demands of both students and MS.

No, MS is not really a gift but the fact that I can blog now and openly write whatever the flip I want is my gift.

Time to start living, even if you piss your pants once in a while. I heard the best folks do it (wink). As a matter of fact, I had a run-in with peeing the bed last weekend. Nice way to start the middle of the night!

Weebs

Jen said...

Oh my---

Of course I thought of something else to say, Blindbeard. I went to Joan's chat room tonight ("A Short in the Cord.") Such a nice, friendly woman. It was me, her, and another Delaware woman, and we discussed support groups, 9/11, and other MS organizations. Check it out. I hope she gets a slew of people there in the future. I'm gonna write about the experience soon.

Another person I forgot about is Diane ("A Stellar Life"), who always has controversial, interesting topics. She is very genuine and doesn't mince words.

That's it! I've already run on at the mouth....

Goodnight.

Kimberly said...

As usual you hit the nail right on the head. (One of the reasons I ready your blog and am a follower). One of the great thing about reading other blogs is when I'm blue they make me laugh (i.e Braincheese and often YOU), they help me find the latest information and they provide support. Of course, not ALL face to face support groups are "touchy feeley". It depends on the facilitator. I'm the facilitator for my local MS group. We are NOT "touchy feeley. We B&^ch about our disease, the treaments, the "crap shoot" of it all. (THEN hug and sing "We are the world" while we roast marshmellows. KIDDING). Seriously, like a comfortable pair of blue jeans, you have to find the best "fit" and what works for YOU. Support groups aren't for everyone. Neither is MS. :) Your blog is awesome. One day I'm coming to Nebraska to meet you!