Monday, May 28, 2007


I believe I am at wit's end. This f'ing disease, my family and their assumptions about what makes me "worse", my family and their assumptions about everything. And though I REALLY and TRULY do love them, I think I've reached my patience level with my kids.

My children scream EVERYDAY, nearly ALL day.
As I type this my daughter, the 6 1/2 year old, is throwing a tantrum and kicking her legs on the floor. My 2 1/2 year old son, is constantly screaming and telling me no. And if I say something he doesn't like he calls me a "Meanie." Sometimes I want to just run away. I told my husband that I was going to see Pirates again today and he said, "Who's watching the kids?" So, no, I didn't go see the movie again.

It's pretty amazing when you think about it... these kids are actually brilliant. My daughter is going into the Gifted program at school and my son, as the parent educator said, has a 5 year old's vocabulary. So it's natural I guess for them to act their worse to test my patience.

Now, the screaming has stopped so I feel okay again. But seriously, the screaming gets to be so much that I cannot take it. I feel more stressed with the loudness of it then anything else that makes me stressed.

And their screaming has gotten worse lately, so I wonder if I've gotten more "yelly". I probably have. This morning we met my folks for breakfast and my mother started saying how she hates my job because I'm so stressed by it. WHAT? I love my job and I love spending the time to do it.
I also love the fact that I work and can still work. GOD, why wouldn't I work as much as I can now. It's like I am proving something to myself that I can do this. Plus I love what I'm doing and I really think I'm good at it.

But instead of support I get grief. Then my mother said, "Well, I raised three of you and when my oldest was 6, my youngest was 2." So I made the mistake of saying, "But you didn't do it with a full time job." And she got all mad saying that it was a full time job. Yes, raising kids is a full time job... but then go out and work another full time job too. And have MS. I guess I get sick of feeling like I have to justify why things stress me out.

This is a very lonely disease. My family doesn't really read so much up on it, my husband barely knows crap about it. I think my daughter understands it more. And yes, again last night she was on her, "I hate MS" kick and saying she hopes she never has to take shots. I feel more empathy from her than any other member of my family.

I did find a site today that is really terrific in the explanations of MS and what it feels like... That link is about what it feel like to have the symptoms we have. Right on... except I didn't see anything about the weird stabbing pains throughout the body that I refer to as my "Voo-Doo Doll" pains.
Then this one is about the invisible part of MS:

This line wigs me out: "If you can't keep up with the thread of conversation at a big meeting, it's not because you're not interested or can't understand." Because this happens to me so much and I have to ask people to repeat what they say and I just KNOW that they think I'm not paying attention. F'ing MS!!!

So the new stuff with me... same voodoo doll pains. And for the past week I've had pains in my abdomen. Since it was moving towards my right side, I wasn't sure if it could be appendix or not. So I went to my doc (regular doc) who thinks it's my IBS... Yes, I've had it since I was 17 and just learned to deal with it. So I haven't even taken medicine for in in like 15 years. He put me on something that isn't working, so I don't think that's it. In my WebMD exploration of what it could be... because on a Sunday night when you have a holiday the next day and you're in pain, it's fun to read up on what it could be. But I came across, "MS" HA!! I mean, as soon as I saw that I thought, you f'ing piece of crap disease!!! Can't I just have something curable for once!!!
Ok, that was total pity party. But come on!!

I think I've also been more depressed and we all know the cause of that... piece of crap disease. I guess this is the time to "embrace it" - not. But I will rejoice in the fact that I can still walk and type and move and see and hear, even when it is hearing screaming kids.

My son is now throwing a baseball in the house. I think they are spoiled. How it happened, I'll never know, besides the fact that every trip to the store results in them getting something new. But other than that...

I hope you're all well. I also hope this helps you even when I'm complaining. I know, I've done that a lot lately. Please take care!


LyGuy said...

If I were you, I'd take some time out each week and flip out like ninja to help release some stress. Don't worry, no one will know cause ninjas are super stealthy.

Pamela said...

LOL!! That sounds like a plan!

Stephen said...

wow, it sounds like you have a lot of your plate. one thing i find that helps me a great deal is rest. i hate it, and i get bored, and i am tired of resting, but lying on the bed (and lying down works better than sitting in a chair) and just reading or spacing out for a half hour or so is very beneficial. i know that in your crazy world, resting might not seem like an option. but you have this f-ing disease, and you have to do things that are good for your health. i worry that you will continue to push until you push yourself into a big attack. it is not easy, but i would strongly recommend finding a way to get some quiet rest every day. and keep sharing your experiences with us - we understand!

Stephen said...

thanks for those links as well. have you seen multiple sclerosis sucks? tells it like it is.

fineartist said...

Pam, I would like permission to e-mail you sometime. My daughter was diagnosed with MS this past July...

She is 27.

I am so glad to have found your bloggy blog, and I can't wait to show it to her too.

Peace and love, Lori

fineartist said...

OMG, and you are in MISSOURI! OMG!

Jeremy said...

Hi, just a comment about the kids going crazy on you. They're probably scared about your disease. They probably know that things aren't right with you and so it is very common for scared kids to act out like this. You should consider talking to them individually to explain that even though you sometimes feel sick, you are going to be there for them and love them very much.