Sunday, October 26, 2008

This One Is Gonna Be An Angry One...Just Thought I Would Warn You

I'm a bit aggrivated...not the right word...miffed? No...mad...getting closer...
Ok, I am way kind of definately, whole heartedly PISSED OFF!
And what am I pissed off at? This mother frippin disease that shows it's ugly head when I least expect it, making my body defy me, let me down, disappoint me in ways ones body should never do.
Let me try to make some sort of sense out of my ramblings for you.
Think of what you do, say, on an average morning from the moment you wake up to the second you walk out the door to work, take your kids to school, go to Dunkin Donuts and then come home and eat two dozen jelly filled donuts, whatever it is you do.
Now, imagine it with these little gems added in:

1. You husband, wife, gay lover (there is NOTHING wrong with that), dogs, children, etc. has to come and tell you to get out of bed about fifty times after the alarm has gone off for twenty five minutes waking everyone up in the house but you because of all the meds you have to take for you illness.

2. You finally get up, still in a fog from the meds, and have to get everyone dressed, pack lunches, fix hair, feed the monkeys, and get them out the door and into the super mini van before 7:15 a.m. to get them to school on time.

Add in the fact that your right leg really doesn't work so you're dragging it behind you like the Hunchback of Notre Dame and you have to bring your cane with you everywhere you go.
It's all enough to make even the most sane of people go crazy. And as I'm sure you all have figured out by now, I am not one of the most sane of people.
One of my main problems is that I'm stubborn. Really stubborn. To the point of being stupid.
For so long, I have fought this illness and the limitations it's put on me.
I have what my therapist calls a case of the "I shoulds".
I should be able to carry a laundry basket up the twelve steep farmhouse steps and put it away.
I should be able to go back up the stairs to get my own clothes.
I should be able to clean the house, make dinner, make it through the day without a damn nap, go to the grocery store, volunteer at the school, go on the school field trips with my kids.
I should, I should, I should.
In turn, I end up exhausting myself and just plain screwing myself.
Friday had been a crazy day. I took the kids to school, came home and put away loads of laundry that had been sitting there taunting me, bathed the littlest monkey, showered myself, and then had to get back in the car and drive and hour to two doctors appointments for myself. Then it was off to the pharmacy and I made it back in town just in time to surprise the girls by picking them up from school instead of them having to take the bus home.
Busy day. No nap. My butt was kicked.
But did I stop? Oh no. I was being the supermom.
There was dinner to be made, homework to be done, baths to give.
The hubs kept telling me "Don't over do it. Sit down if you need to, I can take over whenever you need me to."
In my head I thought "Oh, you're very sweet, but I've got this. I should be able to do this."
By the time all of the things were done, I was exhausted. I had overdone it. I refused help when I should have said "Oh God, yes please!"
But by this time, my stubborn self kicked in and said "Just one more trip up the stairs for your pj's and then you can relax. On more trip up those stairs. It's only 12 stairs."
I made it up the stairs but by the time I got there my muscles in my legs were weak and shaking. But I didn't stop, oh no, I kept going. And that's when it happened.
My body said "Ok lady, enough!" And I fell.
It wasn't a big fall. I was coming out of the bathroom and fell on a part of the floor that is waiting for carpet. I fell to my knees and skinned them pretty good, hit my arm and my head on the wall, added a few new bruises to the collection that I have going, and really beat up my pride.
The hubs came running up the stairs, he knew what had happened. And he found me there, in the floor like I had landed, crying like a little baby. I wasn't crying because I was hurt physically, I was crying because of the "I shoulds".
In a way, when the hubs got there, it was kind of funny. He kept going between asking me if I was ok and yelling at me for pushing myself and not asking for the help that I so needed.
It was:

Are you ok? God that was a loud one!


But are you ok? Is anything broken? Are you bleeding anywhere?


But seriously, are you ok? God you scared the shit out of me! Are you ok?

He ended up going to get my pj's and I ended up sliding on my butt back down the twelve stairs that I had just climbed up.
Remember when you were a little kid and you'd slide down the stairs on your butt? I used to do it at my grandparents house all the time. Thump thump thump. Then I'd run back up and do it again. It was so much fun.
Now, as an adult, not so much. Now, I feel every thump through my entire body, it gives me an atomic wedgie, and I wasn't doing if for fun, I was doing it because I couldn't walk myself back down.
This is what MS has done to me and my body. My body and I are no longer on the same team.
Thank you MS.

Maybe I should get one of these put in the house. I wonder if my insurance would pay for that?

Thursday, October 23, 2008

Don't Mess With Naptime...Or Else

As I've mentioned before, fatigue has been one of the main and most problematic symptoms for me with my MS. Before I was diagnosed, I would wake up at 8 a.m., go for two hours, take a two hour nap, go for two more hours, take another nap, go for a few more hours, then go to bed. That was my day.
After my diagnosis, I was given some meds that help fight the fatigue and for the most part, they have made a huge difference. I am almost a half of a functioning person again. I do still need a nap but it's just one and it's only and hour and a half to two hours long. Not bad.
With the home renovation going on the past five months, the workers started to understand how important my having a nap was. If I got a nap, I was happy and chipper in the afternoon. No nap, watch out for the swinging cane. And since they're nice guys, they would work a little more quietly so that I could get my nap. I trained them well.
One group of people that I cannot get trained, though, is DirecTV. I can't tell you how much of a pain in my ass these people have become! All we want is for them to hook up the boxes in the new parts of the house and move one. That sounds simple enough right? Well, three times these people have come out, during naptime, only to find out that their workorder didn't say "You will actually have to work" on it and they all left without doing anything.
So, we rescheduled again for today. The hubs even made sure to schedule the guys to come before naptime so that I wouldn't kill them. The hours that they were supposed to show up were from 8 a.m. to 12 noon. I could handle that.
At 11:30, this really rude lady called from DirecTV to tell me that the guys are running late and they will now be here anywhere from now and between the hours of 2:30-5:30. Which, how in the world is that even a time frame?
I got a little, for lack of a nicer word, angry. I was going to have my nap today damnitt!
So, I taped a little note to the door for the guys for whenever they do decide to show up. It looks a little something like this:

I sure hope I hear them knock!

Monday, October 20, 2008

Sometimes You Just Gotta Do It, Even If Spite Is The Only Reason

Before MS showed up and changed my life, I used to do a lot of things. One of my favorite things was baking. I used to bake all the time. Seriously. I was one of those people who went to Costco, the bulk food heaven on earth, and bought the ginormous bags of flour, sugar, and chocolate chips.
I remember one time, as we were leaving Costco with my baking purchases, the guy at the door who checks your receipt said "Oh, you have a lot of baking stuff. You must have a baking business." I smiled politely and said "Nope, I'm just one of those people who is contributing to the ever growing obesity population in the country." Then I took my reciept, left the man standing there with a blank look on his face, and pushed my cart full of baking goods to the car.
Since the MS monster decided to show it's ugly face, one of my main problems has been fatigue. I've had months pass the I don't remember because I slept through them. Almost literally.
Today, I decided that I was no longer going to cower in the face of the monster. I was going to bake something if it killed me! I figured it wouldn't hurt me since i've lost almost 100 lbs. because of the meds the doctor has me on. I want a homemade cookie damnitt!
That's what I did too. I baked almost three dozen chocolate chip cookies. Remember the kind your mom or grandmother used to make that you knew you couldn't buy in any store because these were made with love? That's the ones I made.
So, I did it. I'm exhausted now, but I did it. The way I look at it is, sometimes, you've just got to do it, even if the only reason you've got is spite.

Sunday, October 19, 2008

The Value Of A Good Therapist

The day I was diagnosed with MS, this change started happening to my so very extremely nice all the time personality. And the more the MS started to effect or change my life, the worse it got.
I was...well for a lack of a better word PISSED. I was so pissed off. At so many things really.

I was pissed at the doctor who told me that even though I definately had MS, once I started the Rebif therapy, I might not even know that I have it for ten years or more.

Really Doc? Because I've known that I've had it every single day since, thanks.

I've been pissed at the way I see my illness effecting my family. My husband is always watching me like I might shoot off into space if he takes his eyes off of me, my kids were terrified that I was going to die and they were also sad because the mom who used to be "Supermom" now couldn't get out of bed long enough to make them breakfast.

I was pissed at the constant pain that I've been in, pissed as my leg for not letting me know when it's going to decide to stop working, pissed at falling down, at fatigue, at the neurologist, who was supposed to be an MS specialist, who kept telling me that MS didn't cause pain, that my leg had full strength, and that when I started talking like Forrest Gump that wasn't MS either.

That's another thing I've been mad about, I never know what's going to happen when I wake up one day to the next. Honestly, one day I took a nap with my two year old son and I had been feeling different that day. I couldn't figure out what it was, not worse. Just tired. When I woke up, I couldn't speak. Then when I could get words out my speech was all broken and I couldn't complete big words and sentences were impossible.

The next day, my husband drove me to this "specialist" who told me that it wasn't my MS causing my speech. It was stress. I thought, but couldn't say or I totally would have, "STRESS? Really? Cause I have three kids, a farm, a house to run, and all of that was there before and I never started talking like Forrest Gump before!!!" His solution was to up my antidepressant (that I have to take because the Rebif is known to cause depression) and give me a script for Xanax. My husband basically told him to stick the scripts up his bum and we left. I haven't seen him since.

I honestly felt like I was drowning. MS had changed everything about my life, it made me feel like I was on the outside of my life looking in, and I knew I couldn't deal with all of this anger on my own. So, I went to see a couselor and I am so glad that I did.

She's been helping me deal with all of this anger and has helped me to find ways to still be involved with my family without wearing myself out. I've been seeing her now for almost five months and it has made such a world of difference. I'm not as angry anymore, although I do still have my moments of rage at this stinking illness, but I'm dealing with it. I can see the difference it's made in me and in my family who no longer feel like they're walking on eggshells around me anymore.

I highly suggest counseling or therapy to anyone going through this. Therapy isn't just for crazy people, which is what I always thought before.

There's nothing more valuable than a good therapist!

Friday, October 3, 2008

Welcome To The Zoo

Hi, My name is Tracy and I have MS {ahem, this is where you would all say "Hi Tracy" in your most somber AA voices...What? Nobody wants to play along? Fine.}

Well, I guess I'll try it again.

Hi, I'm Tracy. I have three kids who are insane monkeys most of the time. More often than not, I feel like the zoo keeper instead of the homemaker. No, seriously, I'm told they're great so that's good right? My oldest, who was probably the biggest surprise I've ever had in my entire life, will be 9 soon but she acts like a raging, pms-ing, 16 year old most of the time. My favorite thing that she says is "I want to be treated like an adult!" So I'll treat her like an adult and then she gets mad and stomps off to cry in her room. As I watch her go, I think "Gee, if only we could all choose when we want to be adults like she can."

My second child, also a girl, is 7. She was probably the second most biggest surprise of my life since my first baby wasn't even a year old yet when I found out she was on her way. She's an interesting kid. I'm pretty sure that she is a reincarnated 80 year old woman from Jersey who used to smoke a lot of Pall Malls. Actually, I'm pretty sure that Em has lived a lot of passed lives because there are times when she starts talking in a brittish accent, then suddenly she's southern sounding like Scarlett O'Hara. But the Jersey thing has lasted the longest. Plus, she always gives you the feeling that she's way smarter than you and she's just tolerating you until she can reach world domination.

Then there's the wee-man. My little two year old tazmanian devil. I swear, I thought I knew what I was doing with this whole mothering thing until I had a boy. Geesh. He never stops moving, what he can't climb, he eats, and he's more than happy to piss his sisters off. He also has times when he's cuddly and sweet. Usually he's sleeping during those times but they still count.

I'm not going to give you the long, detailed road of how I came to be diagnosed with MS. I'll just give you the important stuff and we'll build up from there.
Here's the low down. Around the age of 16 or so, I remember having a week when I had a horrible headache, a blind spot in my right eye, and it hurt just to move my eyes. I didn't really mention it to anyone and after a week it went away. Problem solved. I just assumed that I had taken some bad drugs or something. I know now that what I had was Optic Neuritis and that was probably my onset to MS.
Years went by, a marriage happened between myself and my wonderful husband, and lots of babies kept appearing out of nowhere (and by nowhere I mean my whooohaaaa!) and life went on.
Over the past ten years, I've had times when I was a little "extra clumsy" and I would trip over random things, like oh, say, air, but I always managed to explain these things away. It doesn't do for mother to get sick afterall.
Two years ago, after my son was born, I started having a lot of migraines. Like three to four crippling migraines a week. I had the blindspot, sensitivity to light, smell, noise, and people. I started seeking help from neurologists for these migraines and since none of them knew what to do with me but were to arrogant to admit it, they would just write me a prescription for some pill that would do nothing and then send me on my way.
About eight months ago, I had a migraine that was so bad I ended up in the E.R. The next day I followed up with my family doctor who was an elderly, smalltown doctor that I basically used for antibiotics. He said "Hey, you know, you've never had an MRI. We should maybe get one of those." So, I did.
Two hours after my first MRI, my family doctor called me to tell me that I needed to see a neurologist ASAP. That I had 19-20 lesions in the white matter of my brain, consistent with MS.
My life changed at that exact moment.
I do have another blog that I've had for about four years called Rambling Thoughts of The Neverending Mind but it's more of my funny, everything is peaches and cream and everyone is shitting snowcones kind of blog. I didn't want to weigh it down with MS stuff so I decided to start this one.
I'm hoping to find some people who also have MS. Right now I only have one person that I exchange emails with and I would really love to hear from more people, compare some notes, curse the illness, whatever hits our fancy.
So, Wecome to the Zoo!