MS Walk 2012

This year was my 8th year going to the MS walk and it is definitely a year I won't ever forget. I was asked to tell my story to help kick off the walk. I was really nervous about talking in front of so many people and to be honest I didn't really plan what I was going to say until the night before. Not that I needed too much planning, since it is a story about something that happened to me.

It was such an awesome experience. I spoke after the mayor of Frankenmuth, which was a bit intimidating, but I think I did pretty well. After I told my story I got to cut the ribbon to start the beginning of the walk. There were thunderstorms, so the walk had to be held indoors. I wasn't going to be able to walk the 3 miles, that the walk usually consists of, but since it was held inside I was able to make the first lap around with the mayor! It was really awesome and everyone was clapping for me.

 It was a really great day that I won't ever forget. Thank you to everyone involved, everyone who donated and everyone who was there to support me. Also thank you to my uncle Dave, who put together this awesome video of the day! I am truly blessed!

Here's the video!

Good news and bad news

So the good news is that my medicine finally came today! It's a shot for five days of a hormone that will make my body produce more of it's own natural steroid. In turn, hopefully making me feel like a new woman! Fingers are crossed.

Another good thing about the medicine is that it was completely free for me. It has been so stressful with all of these medical bills rolling in everyday. Last week, when I checked the mail, I said something to Vince about how there was no mail and I couldn't believe it was a day without medical bills! Then about an hour later we heard the mail come, (the mail man must of been running late) and of course there were bills! I guess I spoke too soon.

Besides all of the bills, the other bad news is just that I haven't really been doing much better. I think that I am adjusting to feeling this way though, which makes it seem that I am doing a little better. I'm finding ways to do things for myself without having to bother Vince, or my mom to help me. It's not really an adjustment that I wanted to make, but c'est la vie.

I've started using a cane, which has been an experience. I began using a cane my mom had in the basement. It was my great grandfathers. I jazzed it up with a little bling I picked up from Walmart. I just wanted to try it out before I bought one. Well it turns out that I really like using the cane. It helps me keep my balance, and helps my fatigue. So my mom bought me a fancy one. It's a really pretty purple color with a really soft handle. The other cane had a wooden handle, and it hurt my wrist when I used it for a long period of time. So I was really excited about the handle.

I have gotten some looks from people when I use my cane, mostly kids though. It doesn't really bother me. The best part about my cane though, is that people move out of my way! I love that. But of course as much as I like the assistance of my cane right now, I don't want to be using it forever! I'll be glad to put it in the closet!

Lastly, I really need to shout out to my parents and Vince's parents for all of their love and support through all of this. They have all been awesome. I love you all very much!

It's been a bumpy road.

Well I'm a little over due for an update. It has been a difficult couple of weeks to say the least. I have been to a bunch of appointments and I have two more next week.

I haven't really been doing any better physically. I'm still having weakness, mostly on my left side. I am also having a hard time with my throat and neck. My chin has been numb for the last week as well. I guess I am doing worse really. Luckily I have my long awaited appointment with the new neurologist on Tuesday. It can't come soon enough, I really hope that he can help me control these symptoms.

The other neurologist I saw didn't really want to do much for me. However he did order an MRI, which I had last week, and has helped me through the process of getting on a new medication. I'm going to be trying the only oral medication for MS on the market. I'm excited about that for sure. That means no more needles!! There are a lot of precautions to take with this medication though. I had to see a dermatologist and ophthalmologist. Hopefully everything works out and I can start on it soon.

Besides that I have been doing a little better emotionally. I'm not sure that the anti-depressants have really started working yet, but I think that my attitude has been a lot better. Maybe the nice weather we are having has something to do with it.

I've been trying to get out a little bit here and there. My gait is off and it takes a lot of energy for me to walk through a store. The dizziness doesn't help either. So because of this I have been thinking about using a cane here and there, when I go places I know I will be walking a lot.

I'm really torn about it though. I don't want people to look at me differently. I'm young and I don't look like someone who should need a cane. It's a really hard decision. I think that It would help with the fatigue I feel when I'm walking, I'm just not really sure that I'm ready to give into it. I mean how do you know when you are ready to use a cane? Beats me.

Busy as a bee (today)

So I'm not doing so well these days. Besides, the depression, I'm pretty sure I'm having a legitimate flare up. By flare up, I mean that MS is in full force and has been kicking my butt these last few weeks.

I'll start with my legs. My legs feel like they weigh as much as a ton of bricks. They throb with pain and keep me up at night. My balance and gait is a little funny and I'm moving a little slower. That could also be due to the vertigo I've been feeling. It is most likely a combination of the two symptoms.

My hands are both weak. The left, a little more than the right. I'm having trouble opening things and writing. Typing isn't very enjoyable either. It's taking me awhile and I keep making mistakes.

Lastly, my entire body has this strange uncomfortable feeling when touched. It's so uncomfortable it makes me squirm. It's a really horrible feeling that I haven't really experienced until now. It very bothersome. I had to tell Vince not to touch me these last two days. Which has been hard. Even a touch on the arm causes me discomfort.

So all these horrible things are going on, but the good news is that I saw a doctor today and he did give me a few prescriptions. One for the depression, and another for the nerve pain that I have been having. These drugs are going to help with the symptoms that I am having, but not the weakness in my hands. I have a neurologist appointment for that at the end of the month, which is the soonest they could get me in. I hope that they don't get any worse while I'm waiting.

Also today, I applied for disability. Which, fingers crossed, I will be able to get. I obviously haven't been working, so I really need the money. It's going to take a few months before I get a decision. So yet another waiting game.

Between the doctor appointment and the social security office, It was a long day for me. I'm really glad though that my mom was with me through it all. A BIG thanks goes out to my mom for going with me and helping me with everything. I love that lady very much.

Dark Cloud

 It is hard to admit depression. It is also hard for me to admit depression. The reality is Multiple Sclerosis is pretty good at causing it. It is very common to be depressed with MS. The reasons are obvious.

I remember a few years back, I was in the doctors office and he was trying to tell me that I needed to be on an anti-depressant. Maybe I did? But at the time I just didn't like the fact that someone was telling me that I was depressed! I always considered myself to be a happy person, maybe emotional, but certainly not depressed. I didn't take the doctors advice and well I think I was fine.

But lately, I'm not so sure that I'm fine. In fact the last three days I have barely opened my eyes. I have been sleeping constantly. I'm just really feeling blah about everything.

 We had a meeting at work the other morning, during one of my few awake moments. A man came to talk to us about saving for retirement. He was listing ages of retirement, and I was sitting there thinking that my body is already ready to retire at 25 and 75 is a long ways away. It was so hard for me to be positive, because I've been missing so much work, and work itself has become so much more difficult. I couldn't help but think of the worst. I may not be able to work long enough to "retire"

I feel really defeated. I have a doctors appointment at the end of the month, I think It could be time to ask for that anti-depressant I turned down a few years ago.

Trigeminal Neuralgia: Say that 5 times fast

The last three days have been pretty scary. I have a new symptom that I've never experienced before. When I eat the roof of my mouth and back of my throat feels like it is on fire. Because of this, I haven't eaten much the last three days. The pain is so bad that it brings me to tears. I mean it's intense pain! I contemplated going to the ER last night, but with no health insurance at the moment, and going down to part time at work, the idea of a huge emergency bill turned me off.

So instead of going to the doctor I did the next best thing and started searching the internet. It seems to me that I am experiencing what is called Trigeminal Neuralgia. Apparently though only 4% of people with MS experience this symptom. Sucks that it had to happen me. Hopefully it goes away for good, but from other things I have read it usually comes and goes. I'm also not a doctor, so maybe I'm wrong, but from what people are saying it is the exact pain I am feeling.

That's how I have been feeling physically, emotionally is a whole another story. I've been feeling really depressed lately. I think that things have just gotten harder for me recently and it's taking a toll on my optimism. I've given up on a lot because of this stupid disease and I hate it. I really have things that I need to work on, and hopefully my MS will allow me to do that.


Also, I just wanted to share that while I was messing around, looking at some other blogs and MS articles, I came across this thing called the Spoon theory. It's basically a story explaining what it feels like to have an "invisible disease". I think that it is helpful in understanding diseases that are not always easy to understand and it is worth reading.

Frustrated.

Well, I've been sick for about a week now. I caught a cold.

Here's the deal, for all you who just don't get it. When someone who has MS gets sick, even if it is just a regular everyday cold, it is different from when a healthy person gets sick. MS is an autoimmune disease. The best way I can easily describe that is by saying that my immune system, when kicked into gear, attacks the myelin that covers my brain and spinal cord. In turn this causes me to feel all sorts of different things, but currently dizziness and weakness in my lower legs. So basically instead of my immune system fighting the cold it's fighting my own body.

I guess I understand why it's hard for others to get it. To them I have a cold. No big deal.


I just really wish that there were more people in this world that understood, people outside of the MS community. Life would be a lot easier for me and my fellow MSers.