Tuesday, November 17, 2009

MS? Who cares!

MS? Pssssh. MS is just letters for me today. They could mean anything. My Song. Many Saved. My Sweet. Pick one! Granted, I lost tuesday again. I went to bed after heroes Monday night at 9pm and I just woke up. My time, it is now 1:20am wed morning... BAI BAI Tuesday! In my defence I did not sleep at all sunday night and tried to stay up for Heroes (very important!!)

So today I'm thinking about the future. It's not bleak. I've been working on my art recently. It's making me feel so much better about my self. I have skills. I have skills other people don't have. Sure I also have MS but who cares? Not me today. ^_^ I've been planning Christmas presents for the family. I have a list of art projects set that have to be done for Christmas. Busy busy!

I also have a goal. The Las Vegas Star Trek convention. My mum and I are going to start saving to go. I'm going for the gold admission package so it's going to be expensive. But if I'm going to do something once in a life-time, I'm going to go all out for it. Better to save an extra year then to be disappointed I couldn't make all the fun stuff becuase I wasn't patient!

Having a goal that is so huge is uplifting. I feel it is totally attainable. And day dreaming about the out come is nice lol. But knowing I can attain something this grand helps me realize I can attain all the normal stuff I want to. Screw MS!!!! I'm going to go to college, get my job and drive a damn car.

So today I say UP YOURS MS!

Friday, November 13, 2009

Planning the future.

How does a person with MS plan for the future? When I was a teenager, I wanted to be an archeaologist. But when I can barely get the energy to walk to the mailbox or clean my house, that dream starts to look a little unrealistic. Then I thought of being a historian or a history teacher. But once again, my fatigue and symptoms interfered with schooling. I did not meet the dead line for my college fund and now looking at years of grueling study (expensive study) is also becoming unrealistic.

So my goal now is to work with animals. No I don't want to be a vet. I'm thinking of pet grooming. I love animals, I've got 5 cats and had a dog. He was 19 (beagle) and had to be put down this summer finally. But I really enjoy the grooming process. Brushing my maine coon is very soothing. I also had the chance to groom a pomeranian recently who was very matted and her nails were longer then my cats. Working the mats out of her, bathing and clipping was certainly a process. But after it was all over, she could walk easier, and she wasn't in as much pain from matting, or fleas. It was nice. I've looked up some courses and could deffinatly do it.

Problem. I live at least 30 minutes away from the city where the school is. I do have a learners permit to learn to drive, but no one to teach me or let me use their vehicle. Also, driving with MS? Scary thought. My Dad used to lose his vision when he was driving sometimes. It was terrifying. What if something similar happens to me? I could hurt someone. Or worse.

I want to move forward with my life. Tell me how you have overcome MS related difficulties involving work and school, and driving.

Friday, October 30, 2009

Depression and MS

This post probably isn't going to be very uplifting. I don't want to get you down, but down is how I feel today. Depression is a very real illness. I've seen it nearly destroy my Dad, and I feel it's effects every day.

I'm feeling trapped out here in the country. I know I need to be able to drive a car, but it's a frightening thing for me. What if a symptom comes on while I'm driving? I could kill someone. But I'm stuck out here with nothing to do. No meaningful work, no work at all. I've been thinking about a part time job, but how will I get to it? I want to work in a bookstore or grooming animals. Disability is not enough for the cost of living. All the jobs I want to apply for are a 30 minute drive away, into the city. I do have my learners permit, but I have no one to drive with. If I did manage to get my license some how, I still won't have a vehicle.

Disability doesn't really help in that area. My worker isn't working very hard for me either. I've asked for that dang package on all the things they can do to help a person on Disability find work, and nothing! She even reamed me out on the phone for not having all my bills on-hand when she called me one day (which I wasn't expecting). I own this house. I inherited it from my Dad, and with his life insurance I paid off the mortgage. So this is all mine, and yet she made me feel horrible, even guilty for owning my own home at age 22. I want a new worker. I need information on transportation programs, schooling, jobs, anything I can get my hands on to DO something. I don't want to be stuck here all my life crying over my MS! Plus I've heard that Disability provides help on things like a gym membership. I could certainly use that. My doc told me I have to work my muscles. I'm a small person, so most people just say "Oh you don't need to work out your fine the way you are". Well this isn't a weight issue. I can barely walk up the road to get the mail without reeling. My body has been deconditoned from lack of activity. My neurologist explained it all to me, and how to build it back up. I absolutly LOVE to swim, and the gyms have pools. Why is my worker ignoring me!

Anyway, all this is getting me down, and I wasn't standing very tall to begin with. Oh mum I wish you were here.

Wednesday, October 28, 2009

I lost Tuesday.

Here I am complaining about fatigue, and I go and sleep for 26 hours. Oh ya I'm not kidding. I just woke up from it. Boy did I ever have to pee. Believe it or not, I never once got up in those 26 hours to pee. Is that even possible?

Why did I do this? I have the most retarded sleeping pattern, if you can even call it a pattern. I have always been a night owl, since I was a kid. My mum can verify this. As a baby I would stay up late, sleep through the night, and not wake up until about 9am. Oh ya, my Mom had it good with me. =P Then my Daddy allowed me to stay up late to catch Star Trek (TNG) on certain weeknights. I would sneak out and sit by his chair to watch it, glancing at Mom to see the "I am certainly not amused but I'll tolerate this" look. Then late public school, early in high school ( that would be about grade 7 - 10 here) I started staying up until at least 2am. Sometimes I would not go to bed at all and go through the next day in a fog. My sleeping just did a nose dive from there.

It doesn't help that my Dad was also a night owl. We would often stay up together until 2 or 3am watching Star Trek, reading, talking, etc. It's almost as if we enabled each other to stay up. My Mum also isn't one for going to bed early, and when I was a kid she worked many night shifts.

So now I go back and forth from staying up all night, sleeping in the day, to not sleeping at all. The weird thing for me is, I feel I have so much more energy at night! I almost feel normal. But I can't live like that around my boyfriend. He works days and sleeps nights. I would never see him if I lived this way. So I stay up all night, push to stay awake during the day, and crash in the evening. That's how this 26 hour sleep started. I did wake up a number of times wanting to get up, but my body was just not doing what I was telling it to. I call BS on mind over matter.

I wish my Mom was here. She's living across the country from me now. She helped me regulate myself a little bit. I always looked forward to getting up and having a chat with her over tea and coffee at the table.

Ah well, we'll figure this out. One step at a time. I'm looking forward to a ood dose of BOOKS! Woot. This weekend hopefully. I'm re-reading Homer's, the Oddysey at the moment. I think I'll go dive into that now. See ya later guys. ^_^

Tuesday, October 27, 2009


I think my most disabling symptom is fatigue.


My coffee intake probably doesn't help my situation much, but the energy issue is really starting to get me down. It just seems impossible to manage. Sometimes I look at all the things I want to do around the house and I just want to cry. Where do I start? If I start, I might get half way through the first task and end up napping the rest of the day with my cats. I haven't gone through my Dad's belongings yet. I need to sort it all, decide what to keep and what to donate. I havea room full of stuff to go through, and a shed. Then I need to consider all my household stuff, dishes, laundry, sweeping and mopping. Uhg. I tried to mop the floor the other day. I got the living room done and crashed out on the couch.

The worst part of this situation? I've run out of books to read and the library is sending hired goons to collect my fines! So I can't borrow library books... What will I read? This is a terrible situation. I've been reduced to digging out old Cosmo mags. HALP!

I was browsing some of my Dads books and found Clear and Present Danger by Tom Clancy. Normally I wouldn't have looked twice at it. Political spies, techie army stuff, weapons and aircraft? No way, I'm into pre-historic Native fiction. My Dad's books all consist of non-fiction, Star Trek, and war books. He has weapons and aircraft atlas's, history books up the *bleep* and other random books I'm really just not into. Amid all these, I found this Tom Clancy book. I've been eyeing it for some time. It was staring at me from the "Dad" bookshelf. I had other books that I could re-read though. Well, you can only read all your books a million times before you really want something new. So... I picked it up.

Oh. My. God. This book was just amazing. It's now on my top 5 list of amazing favourites. Pretty close to #1 actually. The author is just astounding. But it's all over now. I read it in a few days. I tend to read while in between other tasks, a page here and there, a few hours one night in bed, then not at all the next day. Unless the book holds my interest. Then nothing else matters but that book until it's finished. I'm sad it's all over now. I'm also sad I've nothing left to read.

Well this sure went onto a book rave didn't it. But what else can a person with extreme fatigue do? Reading doesn't require much from me, although sometimes I'm too exausted to retain anything I've just read and have to put it down. I also play world of warcraft. It's fun to be able to socialize normally, even if it is a game character I'm moving around a pretend world. I can control that world, and my character has no physical limits like I do.

Help me relieve my boredom. Tell me what your fave books, games, and movies are so I can check them out. I think I might be able to bribe my loving fiance into using his library card for me. MWA HA HA HA.

Saturday, October 24, 2009


So the next step tp diagnosis is the hated Testing. This can include MRI's, CAT scans, wires and needles, and maybe even a spinal tap (ouchies). The only sure way to diagnose MS is to have a spinal tap, or to moniter a patient with MRI's over the course of years. The docs look for a certain pattern with the lesions on your brain. But just like the English language, there are many "exceptions" to this pattern. I'm an exception apparently. I really don't know how or why except that the lesions on my brain do not follow the exact pattern for diagnosis, but the number of them and their placement still scream "MS MS MS". It would be so much easier if the docs could just dumb this stuff down for us simple folk.

The testing phase really sucks. It's the worst part. You don't know what's wrong with you, and the docs are great at scaring you with "worst case scenario" crap, when their not looking at you funny like maybe your just faking everything. I hated the MRI's, but they were not so bad until they started sticking me with needles. They injected me with something to "help get a clearer image". It left my mouth tasting like I sucked on a penny all day. At first I learned to just doze in the machine. I even got used to the jackhammer noises going around my head. They brace your neck so you won't accidentally move so you don't even have to worry about keeping still. Next thing I know I get yanked out thinking it's all over, and while still braced in, they stuck me with a needle! No warning! Meanies >.> Some of the technisions don't have the greatest bedside manner either. Then there's all the bloodwork that has to be done. That's not much fun either. On the plus side, the nurses at the blood lab were super friendly and had lots of pictures of their cats. I can get along with anyone who likes cats! I've had so many needles that they really don't bother me much anymore.

Another part of the testing that really sucked was knowing my Mom was worried sick. What could she do but be there for me? I do have a little but of advise for parents going through testing with their child. TREATS TREATS TREATS! For the first tests, if they are small, a small treat like ice cream afterwards is great. They get to spend some time with the parent and be rewarded for putting up with everything. For the scarier tests (example, spinal tap) a big treat is in store. Perhaps they get to pick out any toy they want at Toys R Us, or any movie they want to see plus dinner. Trust me, it really helps the testing process for us to know we just have to get this out of the way and then we have something fun to look forward to. I also wanted my Mom right there while they were doing the test. If they made her leave the room I did not cooperate very well. Just having her their to hold my hand or rub my back helped so much. I knew I wasn't alone. Of course the MRI is something you have to face alone. But there is a panic button incase it's too much.

My serious testing started when I was about 14. I was having the same vison problem, but frequently. One time I was standing waiting for the bus to go to school, and it was just gone. I couldn't see anything but green. I know green sounds weird, but it was green. I heard the bus whistling up the road, heard it stop, and felt my way around the front and up the stairs. I felt the seats to the back where I knew my boyfriend would be sitting and sat down. It was a full 5 minutes before I could see anything again, and then I vomited in the garbage can from the front of the bus. The bus driver offered to drop me off at home when he went back to start the public school run, but by the time we made it to my school I felt fine. This started to happen more frequently though and the docs started looking for a cause.

The testing got even more serious when I was about 17 and the tingling in my left arm started. I just had to move my head forward and down slightly and my left arm would tingle. After a month of this I went to my doc, and she sent me to a neurologist. By the time I had all the MRI's and tests required for the neurologist, the tingling had moved down my entire left side. I visited him in April, and by June my whole body was tingling. I felt like an electric fence was attacking me. It got so bad I didn't even have to put my head forward to bring it on, it was constant. I could not sit, stand, or lay down. I couldn't attend school, I cried during my English exam because I couldn't focus. Finally I called my neurologist in tears and he got me in the next day on his lunch break. Nice guy by the way. He wanted to hospitalize me until all the tests he wanted were completed, which I refused. So he started me on a medication usually prescribed for epileptic seizures, It was an anticonvulsant. That stuff made me so loopy. But loopy was better then getting attacked by that evil electric fence.

Then on June 29th, I found out my Dad had passed away. A month after that, my doc broke the news that I had MS and he was sending me to the neurologist at the MS clinic. He was surprised when I heaved a great sigh of relief and said 'MS? Is that all?" He had me believing I might have some sort of rare cancer with tumers on the ends of nerves that required surgery on my neck and I would be cripled etc... "worst case scenario". And he wondered why I was relieved to hear MS? Silly neurologist.

Testing sucks, it's scary, you have no idea what's going to happen to you or what is wrong with you. But it's worth it to know. Trust me it is. And although MS really sucks, you could have scary nerve cancer thing instead! At least MS is not fatal, and you can live a fairly normal life with it. You can even work if you want, although I wouldn't advise a job that requires much standing, driving, or physical effort.

Friday, October 23, 2009

Background and stuffz

The first step in testing for a diagnosis is family history. Your doc will pour over your family medical history. Since I plan to bring you fully up to date with my own experiences, this sounds like a good place to start.

My Mumsy is tall and thin with killer movie star legs (which I not so secretly complain about not inheriting). My first experience with a symptom happened with her. She was cutting my hair. My hair is naturally blonde, and I wear it long. I always have (change is a scary place). Well that's not really true... I once had a very stylish mushroom cut I gave myself when I was about 4... Anyway, I'm getting off topic. So she's cutting my hair, and I am standing up straight so she can get the edges. It happened so fast, but my memory of it is like a slow motion scene. My vision started to cloud. The colour was greenish. You know when your outisde on a bright sunny day, or the glare of the light bounces off snow into your eyes, and then everything has a greenish look to it when you go indoors and you can't see very well? That's what I was seeing. But instead of getting better it just filled in until I couldn't see anything at all. I remember my mom saying "Dolly stand up straight" (that's my nickname) and then not being able to hear very well. I thought I heard her shouting "DOLLY!" but it sounded very far away. Then my legs gave out. I hit the ground. I was 9 years old. And so started the testing that would go on into my 20s. Among my many diagnosis were low blood pressure, low blood sugar, epilepsy, and my personal favourite... "I don't know lets do more tests." I am a lucky kid who had my Mom with me for all of this. I couldn't have gone through that testing without her.

Now My Dad's medical history really interested the docs. He had Multiple Sclerosis. His first symptom had happened in his 20s but he never had another symptom besides extreme fatigue until his 40s. Then one night Mom rushed him to the hospital and pretty soon he had a diagnosis. I was still pretty young so this was the first time I had heard of "MS". My Dad looked fine to me. He sure slept a lot and that was annoying sometimes when I wanted to do stuff... or Christmas morning (DADDY SANTA WAS HERE GET UPPPPPPPPP!). Then I started noticing things. He couldn't walk far. He had to sit down a lot when we went to air shows, and that was unusual. He pulled over to the side of the road driving to have a quick 5 minute power nap, and eventually, he had to sit down to do his prep work for cooking. His legs were so weak! I couldn't really understand why. I remember one summer every time he got out of the car his whole one side would seize up and become stiff. He couldn't move and had to wait it out. That went away after a few months. That's the problem with MS symptoms. One will show up, hit you like a truck and then speed away. Drive by symptoms. Hello... goodbye. Sometimes they come back to have a look at the vic, but most times they keep on driving. Then a new truck comes speeding in.

My Dad also battled clinical depression. After a severe illness and a long hospital stay, his MS was worse then ever. He wobbled so much while walking I wanted to stay on his elbow. On Father's Day of 2007 he was visiting me, for the weekend I should say. He had to grab the wall and almost hug it while he moved around my place, and he fell down so many times. I could cry thinking of it. Not a month later he passed away. ***Were going to talk about this more and how heat effects MS symptoms***

I kept most of my later testing such as MRI's and neurologist appointments a secret from my Dad. I was disgnosed a month after I lost him spiraling me even further into a depression I was not climbing out of as well as my Dad did. I told him of a few MRI's but everytime he became so worried he might have "given" me MS that I stopped telling him. He didn't buy the "MS is not inherited" speech I gave him fully backed up by research. http://www.mssociety.ca/en/information/ms_what.htm. In some ways I'm glad he never heard the diagnosis.

So that's a start I think. Long story huh? It gets better DUN DUN DUN. Next time we have Testing and how to deal with it.