A Little Overdue

Well it has been far too long since i have updated my blog. I'm not one for excuses, but I was having some issues with my keyboard!

So I have been on my new oral medication for a few months now. I haven't had side effects really at all. It is hard to tell though because I have started a bunch of new medications, so it's hard to say what side effects are from which medicine. The worst that I have noticed is night sweats, which are no fun at all and keep me up all night, but I guess keeping my MS is check is far more important. Besides the side effects, the best part about the oral med is that I have no problem taking a pill everyday rather than having to talk myself into taking my shot.

Since I was diagnosed I was told their would be an pill for MS, I didn't really think It would be on the market so soon. It's really awesome that I am on the first pill! I'm really happy with it at this point, and hopefully it continues to help.

As for my overall health, I have been feeling some what better, depending on the day. Some days are better than others I suppose. I've been trying to do more around the house and get out a little more, but I really need to pace myself, especially with the heat. Heat is no good for MS!

Besides the heat, stress is also no good for me. The medial bills keep rolling in, and without working it causes so much extra stress in my life. So I've been trying to stay calm and tell myself that it will all work out in the end. I'm sure that it will eventually. :)

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.

WARNING: mushy gushy-ness

Today is my boyfriend, Vince, and I's four year anniversary. So I think it is only fitting that I tell you a little bit about us and the way that we handle my disease.

Vince and I met through a college roommate. I can't really say that it was love at first sight. We talked online from time to time, but living an hour away, we never really hung out. Eventually, a year or so after meeting, we made plans. Vince was coming down for the weekend to attend a party his friend was having. He asked me if I would join him. Since I had no previous plans I decided to go.

After that night he never left my side.

I told Vince that I had MS shortly after meeting him, so when we started dated he already knew. He asked a lot of questions and I have always been an open book when It comes to MS, so we talked about it a lot. He wanted to know what was going to happen to me, if I was going to be able to have children, and basically just what to expect.

I loved that he was so interested in it. It meant a lot to me.

It didn't take long after we were dating before I ended up in the hospital. We had only been together a few months. He was on his way home from visiting me when I called to tell him I needed to go into the ER. He turned his car around and ended up staying with me at the hospital. I wasn't really expecting him to, because we hadn't been together that long. I think that is when I realized that he was in it for the long run. He may have been scared of my MS but he held my hand and faced it with me.

Ever since then he has continued to be there for me through it all. He has helped make my life easier in so many ways. If I'm not feeling well he will do the cleaning around the house, wait on me, and give me a shoulder to cry on.

It was difficult to find someone who would be understanding of me and my disease. I dated a lot my first few years of college. I never had anyone run when I told them about my disease, but I did encounter a lot of guys who just really didn't care about it. It was tough. I thought that I would never find someone that would be accepting of me.

It took a little time and patients, but I've found the diamond in the rough.

I love you so much Vince. <3

I know the feeling.

My friend Jenny had just dropped me off. We had been out with our friends, doing who knows what. Something probably not that exciting. My memory fails me most of the time, but I remember walking into my parents house that night. I had stubbed my right toe on the door frame. Instantly my entire right foot started to tingle. It felt as if it were asleep. And it didn't stop for at least a month. Not only did it continue, but it traveled as well. My fingers on my left hand had began to tingle. Day by day it traveled, it expanded to my waist and wrapped around it, like a hug. Not a hug I wanted.

That week I found myself in the ER several times. My mom by my side, I was poked and prodded. The first visit I was told that I had a migraine, without a migraine. What does that even mean? My extremities were asleep and that was there explanation? Finally the 3rd time that week in the ER, after my mom crying and begging them, the doctor set me up with an appointment to see a neurologist. The doctors had mentioned Multiple Sclerosis in my visits that week and I knew that was why my mom had been so persistent that I see a specialist.

I had an MRI and a spinal tap. The MRI wasn't a big deal at all. The spinal tap however, was a pain in the butt! Actually a pain in the head. I had a really bad spinal headache from the fluid they took from my spinal cord. I had to lay flat on my back for days, and eventually had to go to a pain clinic to get a blood patch. A blood patch is when they take blood from your arm and put it into your spinal cord to make up for the loss of spinal fluid that was causing the headache. This procedure helped immediately.

With my headache gone it was time to get the results of my tests. I don't remember much about the doctors appointment. I know that both of my parents were there with me. I couldn't even tell you if I cried or not. If you know me at all, I most likely did cry, because I am a big cry baby. I do remember leaving the appointment though. I remember thinking that I wished the spots on my brain were cancer instead. Looking back I don't agree with my train of thought, but at the time MS was a life sentence and cancer, well you can beat cancer. I know it's kind of messed up thinking really, but really I didn't want either.

I have MS, now what? Welcome to the wonderful world of injectables. There is no cure for MS, but there is a treatment. It involves a syringe and a very sharp needle. Not really my kind of fun. The nurse came to my house to show me and my family how to prepare and administer the shot. The nurse then watched me do my first shot. It took me a good ten minutes of convincing before I actually did it. I wouldn't let anyone watch me, I guess it made me nervous. The first three months of being on my medication I would sit in my room for an hour or so with the music blaring. I always had the song "Hold on" by Good Charlotte on repeat. For some reason that song got me through it, eventually.

I've had some flare ups since then. Mostly my flare ups present themselves as weakness in my legs. They feel heavy and uneasy. I've been in the hospital on IV steroids and I've also tried IVIG treatment from my home. I've been through a lot with my MS. I have missed a lot of work and a lot of school because of my struggles. It's not easy and every day I have a different story to tell.

My hope for this blog is to not only inform people about MS and the struggles it creates, but also, and most importantly I want other young people with MS to not feel so alone. The support groups and MS gatherings are full of people who are older and have had MS for 20 years. I remember feeling so alone after my diagnosis and so I want to help others.