Sunday, November 30, 2008
I don't know why, but long drives seem to kick my butt now. When I was 18, I could pack a duffel bag with a change of clothes and a toothbrush and take a road trip with my best friend without a moments notice.
But when we got home Thursday evening, I felt like I had been in the boxing ring for 12 rounds and lost terribly. I don't think I got out of bed at all on Friday.
It's good that we didn't stay all weekend at my moms like we normally do because she would have talked me in to going shopping on Black Friday like she always does. I don't know how this happens, really. Every year, we get to my moms and I make the declaration "I don't care if you go or not, but I am NOT going shopping on Black Friday!" And then I suddenly find myself in the middle of the mall or WalMart, fighting for my life.
This year I knew that the marathon shopping was not going to happen for me. I'm starting to acknowledge that I have limitations. I don't like them, but I know that they are there. And I know that one of those limitations definately include not going shopping on black Friday.
And after watching the news, I am so glad that I stayed put in my comfy bed!
I know that the people that go shopping on black Friday are looking for great deals but I didn't know that this meant that they would throw aside all of their manners, compassion, empathy, and human decency to do it. And for the love of all that's holy, where is the Christmas Spirit?
Stampedeing over a WalMart Employee? Shootings in a Toys R Us?
It's like they've turned into wild animals!
Can't you just imagine Christmas morning with one of these people?
Gift Recipient: Oh wow, a laptop! Thanks..But I already have a laptop..
Gift Giver/Rabid Animal: Do you know how many people I had to TRAMPLE OVER to get you that laptop? You better smile like you like it!
I am just so glad I didn't go. I would have hate to put dents and scratches all over my brand new scooter by running over these rude people. And I haven't even upgraded my horn yet so the only warning they would have is a tiny little "beep beep" before I plowed them.
This year, I'm sticking to shopping online. How are you all doing it?
Wednesday, November 26, 2008
I don't know if I told you all about how we're in the finishing touches of a huge home renovation. Did I tell you? I can't remember..
Ok, so we're in the finishing touches of a huge home renovation, there happy?
And the other day, we were moving totes in from the garage and the hubs gave me the most dreadful job of going through all of the stuff that I had hoarded in them. (I happen to be a bit of a hoarder. I come from a long line of them. My grandmother use to serve stuff in plastic butter bowls from, like, 1950)
So, there I am, going through the totes. No big deal.
And then I started finding some things that kind of hit me.
Like all of the kids scrap books that I've made them. Pictures of me being very young and very pregnant. Me as a young mom with two tiny baby monkeys born so close together that everyone thought they were twins. Pictures of me and the hubs before marriage and babies and home mortgages.
Then he brought in, and this is going to sound really stupid, but it was the final straw.
He brought in my pink golf bag.
See, the hubs loves to golf. Would do it everyday if there weren't this pain in his side called "work".
One weekend, two years ago, he had plans to go golfing but his buddy cancelled on him. The hubs looked like someone has shot his puppy. He just looked so sad. So, I offered to go. I don't remember if I was thinking that he would say "Thanks, but no" or "Okay, get in the car!" but he took me up on the offer. I had never been golfing in my life. I had seen a golf coarse and I've seen golfers play on TV so I thought it would be no big deal.
We played 18 holes, I wrecked the golf cart twice before he said I wasn't allowed to drive anymore, and it turns out that I'm one of those people who can whack at that ball with all of my might and it will only go like twenty feet. But the cool thing was, he didn't care. We had a great time, laughing and just being relaxed and hanging out. It was a great day.
After that, I started recieving gifts for no reason.
First came a huge box that contained my brand new pink golf bag.
Then I got some "girlie golf clubs" as he called them.
Then I got some pink, pearly golf balls.
We started golfing together as often as we could. And every time, it was a great time.
But then this summer came and there was no golfing.
I was too sick and he felt too guilty to go.
And I really missed it. I missed us together on the golf coarse.
So, that's why the funk rolled in.
But, in other news, as I'm sure you all already know, tomorrow is Thanksgiving. A day where we worship the turkey, football, and gigantic floats in parades. I hope you all enjoy your day!
Happy Thanksgiving To All!!!
Sunday, November 23, 2008
And you can see their shoulders become lighter. All is now right in the world. Their world anyways. My world is still turned upside down.
That's one of the things that I have found so interesting about this disease.
Since being diagnosed eight months ago, I've spent a majority of that time assuring everyone else that it will all be okay.
What I really feel like doing is throwing a full on, two year old, body thrown to the floor, feet kicking, arms swinging, screaming at the top of my lungs, temper tantrum. But then someone might knowthat everything is not okay, right?
Another thing I remember, back in my "Super Mom" days, going non-stop all day, volunteering all day at school, dance classes, girl scout meetings, etc. and when I finally to bed, I would climb in between the silky sheets and just breathe.
I loved that feeling. The contentment and happiness to get into my bed. I would even say, either to my husband or to no one at all "God, I love this bed!" sigh....
I now hate my bed.
When fatigue set in and then came the exacerbations, I was forced to spend so much time in my bed, alone, away from my family who were downstairs going on with life. I grew to hate that very same bed, with those very same silky sheets. I wanted to join my family. I wanted to fill my chair for family dinner. Hell, I wanted to cook the meal for family dinner, but my body wouldn't let me.
I would lay there, in that bed, alone, and yell to an empty room "I HATE THIS BED!!" Then I would go on to add "And for that matter, I'm starting to hate my body! What kind of a body just decides to just STOP WORKING???"
Another thing I remember is being able to actually remember. I didn't need to make millions of lists and post it notes just to get through the day. I could remember an entire grocery list in my head. Now, if I have to go to the store for one thing, say coffee beans, I have to write it down! One thing!
I'm starting to feel like a child again who shouldn't be trusted on their own. I push myself too far, I can't remember to turn off the oven (that actually has not happened yet by the way) and honestly, I'm a bit of a mess. Maybe I need a nanny.
So, there you have it. Just a few of the things I remember about me and life before MS came to live in my body. Do you all remember anything?
Thursday, November 20, 2008
Yes, I realise now that those were two questions but they're grouped together into a cluster for one answer.
I guess that I should have made some sort of disclaimer when you all started showing up so that you wouldn't be disappointed. Something like:
**Warning:This person is NOT always funny! In fact, sometimes she's rather bland and whiny!
Of course, I am a little disappointed in a few things. The first would be the sissy "horn" they put on it. They can call it a horn but I would have better luck pulling one of the kids hair to get them to yell than I would with that horn. It's highly disappointing.
Also, there isn't a lot of room for my flames. I was really looking forward to having flames painted on it. But as you can tell from the picture, the red doesn't cover a whole lot.
And the tires are teeny tiny! Where am I going to find rims to find those teeny tiny tires? Maybe the wee man has some cool ones on a Hot Wheels car around here.
But the most disappointing thing about it is the fact that it's mine.
Before I had kids and a hubs, I had a boyfriend who had taught me how to drive a Harley by myself. I was told that it was "HOT" to see a chick driving her own hog.
But try as I may, this scooter will never be a hog. But then again, I'm not that young chick anymore either so I guess we're even.
Monday, November 17, 2008
Normally I don't go around telling everyone what's wrong with me, if I can help it. I've always been a private person and I would just rather not tell people who are basically strangers, like the other moms picking their kids up at school, all of the gory details of my walk down MS Lane.
But you always find that one person, I know that every one of you reading know exactly who I'm talking about, who not only completely understand what you're going through but they can relate in some very, extremely, not even "Seven Degrees To Kevin Bacon" sort of way.
Here are just a few of the responses I've gotten when I've told people that I had MS (after them badgering me because TRUST ME, they didn't get it easily!) Followed by what I wanted to say but didn't:
1. Oh yeah! MS. Oh that's some nasty stuff! When I was little, back in the 50's, we would go and visit my aunt who lived in Florida, and she had a neighbor who's daughter had MS. Oh she was such a mess! She had to live with her parents for her entire life cause she just couldn't take care of herself. Isn't that a shame!
*Well, yes, actually that is a shame. But you wanna know what's even more of a shame? The fact that you have no idea that you shouldn't have told me that story! Was it supposed to help in some sort of way? Funny, I don't feel helped.
2. Well, I'm sorry that you have MS but I just want you to know that I donate money every year to that Jerry Lee Lewis Telethon so in a way, if they ever find a cure, I paid for it for you!
*Ummm, thank you? Wrong disease though. That would me Muscular Dystrophy, not even the same initials, but thank you for paying for someone's cure!
3. That's just the worst thing that could ever happen, isn't it? What will you do? How will you go on? What kind of life is that? Not a good one, I'll tell you that!
* Well, up until THIS very second I was planning on actually, you know, living my life. Granted in a different way. But now I guess I'll just send the kids home on the bus and go jump of a bridge. Thanks!
Seriously! What is wrong with people?
It reminds me of when I was pregnant with my first child and still working and everyone, seriously everyone, even people I didn't know would walk up to me in stores and try to touch my belly and then tell me this horrible labor story!
It wasn't exactly the best time to tell me all that stuff! And where is this law written that anyone can touch a pregnant woman's belly, by the way? What, they figure somebody's already touched her so it's ok?
But that's a different rant for another day.
I have just never understood why people feel that they need to so desperately say something that they say these things. It doesn't make me feel better and I cannot believe that this person would walk away from the conversation thinking "Wow, I'm like Dr. Phil!"
The truth is, it's okay to just not say anything.
I don't need to hear the horror stories. I already have enough worry and what if's on my shoulders to last me.
I don't need you to say you're sorry. You didn't give it to me. Nobody knows how we get it.
I just feel like it's part of my life. That's it.
Maybe someone should start making shirts that say "It's MS, No not the thing Jerry Lewis does the telethon for, please don't say anything else unless you want to tell me how great my shoes are."
Cause I still wear great shoes.
Friday, November 14, 2008
He's the kind that goes in looking for intelligence, knowledge of the disease we're dealing with, the ability to make decisions about said disease, and they also have to be ok with the fact that he's going to be very involved (he's a doc) and will be with me at every appointment. If they pass all of these things, then we will proceed with forming a doctor/patient relationship.
I, on the other hand, go in and base my very factual opinion on things like bad breath, hair styles, do their shoes squeak when they walk (I know this sounds weird but it drives me bananas!), are their pants too short, do they talk with their eyes closed, and do they wear too much cologne/perfume. Oh, and they can't be "close talkers". If any of you were ever Seinfeld fans you would know what that means, but for those of you anti-Seinfeld-ites, it means that they get way too close to your face when they talk and it's really uncomfortable. This is a huge no no if you're anywhere near me. I need my personal space, and if you come into that, you might get hurt.
As you can see, both the hubs and myself base our judgments on highly educated check lists.
One thing I've noticed since being diagnosed with MS and local neuro shopping, is that they seem to think that all of my symptoms started the day I was diagnosed. Have you all noticed this?
Like today, we're going over the usual first appointment snoozefest stuff and she would say things like "Have you ever had numbness or tingling in your feet?" And I would answer "yes" and then she would ask how long ago and I would tell her off and on for two years. She would then look at me, puzzled (and they all have), and say "But you've only been diagnosed for seven months, right?"
So, I'm guessing that I'm completely abnormal in this field right?
None of you had ANY symptoms until the doctor came in and said "Well, it looks like you have MS". Then, on your way out of the doctors office, you fell down twice, you lost the ability to speak, you went blind in one or both eyes, and you started forgetting things like where you parked your car.
Then come the questions like "When did you have your first exacerbation?"
See, this question for me is a hard one to answer. I remember as a teenager that I always got migraines and that one time I couldn't see out of my eye and I do remember it hurting to move my eyes (you know, like look around) but seeing as how I'm 30 now, I don't exactly remember what age that happened. Plus, I used to fake a lot of illnesses so I know my parents didn't take me to the doctor for it.
So, I explain all of that (again) and she says "Well, do you think you were 19?" No, I know I wasn't 19.
"How about 18? Do you think it was when you were 18?" Nope.
We did this until we got to 16 and I said "Yes! You know, I was 16 when I had optic neuritis." I had an epiphany people!
But, like I said, she made it through the hub's check list and I liked her shoes so I think we'll give her a chance. Plus my neuro at Georgetown wants me to switch from Rebif to Tysabri and they have a really cool infusion center there so that will be nice.
Who would have thought that at 30 I would be impressed by nice shoes and great infusion centers?
Thursday, November 13, 2008
In other news, I have another wonderful blogger to thank for welcoming me to the MS Blogging community. Lisa Emrich from Brass and Ivory wrote a post welcoming me and she only asked for a couple of things in return! :)
Thank you Lisa and all of you for making me feel welcome. I know that none of us asked to be here but it makes it so much better that we're in it together than dealing with it alone.
You can also visit Brass and Ivory by clicking on the link in my blog roll (which she only hinted a little that she wanted me to put her in) I saw something on there about how she's going to take us all to a carnival or something so that should be fun, right? I love carnivals!
Also new on my blog list is Ben at Did You Know That Montel Williams Has That? First of all, I loved the name of his blog since I've heard that question a lot since being diagnosed and he also left the most interesting comment in yesterdays post and this is just a little part of it:"So at the risk of sounding all Charles Manson here...I'm gonna add you to my page as well. Let me know if that is weird or whatever, but I'm gonna do it. There aren't too many dudes out here for some reason. That's cool though, I guess I'm just the sensitive type."
Ahh, Ben you had me at "at the risk of sounding all Charles Manson". And if you haven't been over to visit Ben's page, or Bald Ben as he calls himself (hmmm, I wonder if that means he's bald?) you totally should because I did yesterday and he's really funny. And he's right, I haven't seen a lot of guys out there and it's nice to get a guy's point of view for a change!
One last rambling before I head off into the fog. I have another appointment tomorrow with another new neurologist. See, I have a neurologist at the University of Georgetown Hospital who is amazing. The only down side is the drive. It takes three hours to get there, or more if D.C. traffic is bad. The hubs and I both agree that it would be good for me to have a local neuro established if anything should come up.
I've been down this road about four times now. There are a lot of quacks out there calling themselved Neurologists! There was one who, on the first visit, saw me walking in with a limp, and said "You don't have to walk like that. If you have disability papers just give them to me. I'll fill them out." Nice.
Number Two told me that none of my symptoms were from MS. At the time I had right leg weakness, foot drop, trouble with my speech, and fatigue. #2 says that MS didn't cause any of those things. He says that I was just really stressed out. He wanted to send me out of there with some pretty heavy duty antidepressants and a lot of Xanax. Movin on.
I have some hope for this one though. A woman that I've been exchanging emails with for a while sees her for her MS and says she's great. We'll see. Wish me luck!
Now I'm off, into the fog, to look for something shiny!
Wednesday, November 12, 2008
From a medical point of view, I knew that my life was going to change when I was diagnosed with MS seven months ago. Hell, it had already started changing before I was diagnosed. I was worried about things like losing the ability to walk and see. I was worried about how I would go on to be a stay at home mom if I could barely take care of myself. I still worry about that now.
My MIL told me that she has a friend with MS and he says that it stands for "Many Surprises" and I think that's pretty fitting. Atleast in my case, I never know how I'm going to wake up one day to the next.
What I didn't expect to change was how people who knew me before MS would start to look at me differently. They talked to me in a different way. I had some who would try to help out by asking me everything about MS and then I had some who figured that they would just ignore it all together.
The thing was..I used to be a pretty fun person to be around. I loved to laugh and most of the words that came out of my mouth had a sarcastic tone to them. But suddenly, to my friends, I'm this broken, fragile little person who can't be toyed with.
I've had some that have stopped calling all together. Two of my closest friends used to call everyday and we could spend hours on the phone. Now I haven't heard from either one of them in months.
But I will say, I have found some funny sides to this kind of thing.
The hubs has a Great Aunt who is in her 90's and lives in Connecticut. She's a very interesting lady, spent her life working for the FBI but she won't tell you what she did, at 80 she wanted a new car (new car to her meant used car new to her) but the one she wanted was a stick shift so she taught herself how to drive it. She's never been married or have any children and she's not exactly the kind of person to pity someone.
During a phone call, my MIL was talking to her and Aunt said "So where is Tracy? Is she around, could I talk to her?" My MIL told her that I had just gone upstairs to use the bathroom. Aunt did this tisk, tisk noise and said "Oh that poor thing."
When I got on the phone I said "I know, right? You'd think that they could fix something! I mean, I have MS and I still have to go pee..where's the justice in that?"
See, I'm still me.
The thing is, I'm a little more dangerous now. Think about it. Most of the time I use a cane. The cane is long. One time, the hubs said something and I wanted to hit him but he was out of reach so I whacked him with the cane. The hubs says that the cane hurts.
And I just found out yesterday that I'm getting my motorized scooter. Just think of the damage I'll be able to do to someone with that puppy! And I can double it if I hold the cane while driving the scooter. No one is safe!
I'm not saying that it doesn't hurt that these people have disappeared from my life or some of the ones who have stayed look at me differently. I'm just hoping that if I keep showing them that I'm still here, they'll get it. And the ones that are gone, I guess they were in my life as long as they were supposed to be, right?
Tuesday, November 11, 2008
I wanted to share with you all this kind of awesome comeback that I had the other day. (yeah, I'm kind of proud of myself, so what?)
Have you all noticed that when you have an illness or disease like, oh I don't know, MS and you tell someone and you see that moment when it hits them that they have no idea what to say to you now? Then this switch flips and it's like "I must throw as many analogies at her as possible" and then you're hit with all of these sentences that make no sense and half don't even pertain to you? Well, this is one I had the other day.
Random Mom at Kids School: Oh, MS huh? Wow. Well, I guess that Forrest Gump was right. Life really is like a box of chocolates. You never know what you're gonna get.
Me: Well, I mean, I guess if the box of chocolates was the kind filled with the gross goo inside and you knew that every one you bit in to was going to be disgusting and you'll want to put it back in the box but you totally can't, then yeah it's a lot like what I'm going through with MS.
Saturday, November 8, 2008
So, here I am, stuck in bed, feeling like crap, and Mt. Everest is slowly growing up in front of me.
Imagine this but made out of laundry. Oh, and without the snow of course.
Thursday, November 6, 2008
When I told her that I had MS she set out to learn everything she possible could about my disease. She's been going to an MS support group, she get's newsletters and emails, and she sent the kids a DVD about MS that eplained it to them in their terms. Plus it was a cartoon. You can't go wrong with having the kids watch a cartoon.
She's always managed to show up when we need her most and help in ways you can't imagine. And the funny thing is, she lives in Arizona. It's not exactly a quick car trip over to West Virginia from her house!
The last time she was here visiting, we went to Target. I wasn't doing too well and my legs were giving out a lot which lead to me falling a lot. When we got into the store to get our shopping carts, we had a conversation that went a little something like this:
MJ: Get one of those motorized scooters for yourself.
ME: Oh, no. I don't think I need one today.
MJ: Get one of those motorized scooters for yourself.
ME: No, I think I can just hold on to the buggie and shop. I'll be fine.
MJ: (a little more stern) Get a scooter!
ME: Ok fine!
And then I got in the scooter, end of discussion. The thing is, she and I both knew that me being in the scooter was what was best for me, but my pride wasn't allowing me to take that first step. So, she made me. I have a feeling that the conversation could have gone on forever like that if I hadn't given in. Who knows? We could still be in the front of Target, months later, arguing about how I was going to get around the store.
When I told her that I wanted to start journeling but I couldn't find any pretty Journals to write in, she sent me about 15 journals from her business. They were all beautiful, different shapes and sizes. I'm now set to journal for the rest of my life.
We tak by email several times a week and we try to talk on the phone atleast once a week but, of course, life sometimes gets in the way. But with all of that, her living across the country, only talking through email, etc, I've never felt closer to her than I do now.
I guess a "support system" doesn't have to be right there at your door to really be of support.
Thank you Mary Jane, from the bottom of my heart!
And I promise to always "eat my peas!"
Sunday, November 2, 2008
My brother has already offered to put some big tires and rims on it for me. And he does have a friend who does auto painting so I could have him paint it pink and maybe put some flames on it or something. That's just a few of the advantages of living in West Virginia. People know how important it is for your vehicle to not only look good but to be prepared for any unexpected off roading trips. I'd also like a horn for it that's really loud, unlike the ones they have on the scooters at places like Target. They claim it's a horn but all it does it a tiny little "beep".
I think this one would suit me pretty well. Not only would it say "Hey, I'm a badass" when not in use, but it also claims to be extremely loud. I bet I could clear an entire department store out with one blow from this puppy.
Although, I found this picture of a walker here that might work out for me:
That thing is ready for an off road adventure anytime. And just look at those shiny rims. Honestly though, I hate this. I had a moment where, as I was sitting in the doctors office and he and my husband were talking about how badly I needed this things, and I found myself thinking "When in the hell did this become my life?" I keep hoping that this is some kind of bad, really bad, terrible, horrible, awful, realistic nightmare that I'll wake up from soon and all of this will be gone. I'll tell myself "It was just a dream" and I'll get out of bed without any pain and I'll go in the kitchen and fix my coffee and not have to take ten fricking pills and I'll go about my day the way I used to.
I guess I'm just having a "poor me" kind of day. I've never asked "Why me?" I know there's no rhyme or reason to why I got MS and I wouldn't wish it upon anyone else in the world.
I guess there are just days where I don't feel up to fighting the monster.