Tuesday, April 16, 2013

So much has been going on!

Well you all should be happy to know that I am still alive despite my lack of blogging. I really have no good excuse besides the fact that things have been kinda tough, in my personal life, as well as physically. In particular, I was in the hospital a little over a month ago and then had to move the week after getting out. So it has been a little crazy since the new year.

I went to the hospital because of weakness, numbness, and pain mostly on my left side. I had to stay there for three days and get the dreaded steroids pumped into me. Surprisingly I didn't end up with too bad of chipmunk cheeks this time. I was happy to be out when they finally let me go and finish up my treatments from home. But home wasn't going to be home for long, so I had to start packing all of our things to move after just being out of the hospital. I made it through the packing and now that we are at our new house it feels really good to be here. The best part about the new house is that there are NO STAIRS!! That makes me really happy!

Since moving my time has been full of appointments to keep me busy. I have been going to physical therapy a few times a week.The PT actually does seem to be helping, even though it has been painful at times, but no pain no gain, right? I also had an evaluation last week for speech therapy. It's interesting because I really didn't know exactly what a speech therapist does. They are going to help me with cognitive things, like memory, attention span, and also word recall. I am really excited about that because I would like to go back to school and I'm hoping she can help prepare me for it. She is also going to be helping me with swallowing. Sometimes when I'm eating it feels like food gets stuck, which is really scary. So that should be good. I also have an evaluation this week for occupational therapy, so we will see how that goes. I think speech therapy will be my favorite though because it only involves exercising my brain and my mouth. :)

I have also started seeing a new neurologist. It has been so difficult to find a decent neurologist around here. I really like him and feel like he actually listens to me, which is very important. At my age I think it is hard for doctors to take me seriously. So it is really important that I find a good doctor that I can communicate well with. I saw him yesterday and he thinks that I may also have fibromyalgia. There isn't really a test or anything to diagnosis it so I guess I will never really know. There are quite a few people who do have both MS and fibromyalgia though according to my doctor. Add it to the list right? But really that could explain part of the pain that I am in all the time.

Besides all of the physical stuff, emotionally I have been kind of on a roller coaster. The doctors were switching my antidepressants around so much it was not making me feel well at all. Now though I think the medication that I'm taking is helping. I still have my days, but I think that is just to be expected with this disease. Honestly I have been more concerned about the anxiety that I have been feeling. It's been going on for a few months now. I'm always worrying about something and sometimes I worry myself so much that I have panic attacks where my heart races like crazy! It is really scary. I am trying to learn ways to calm myself down. I really need to learn how to just let things go and focus on things that I can change. Optimism is just really hard for me at this time, but i promise I am working on it!

I plan on updating more often so check back and see what I'm up to! 

Friday, July 13, 2012

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. :)

Sunday, May 13, 2012

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!

Thursday, April 12, 2012

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!

Thursday, March 22, 2012

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.

Wednesday, March 7, 2012

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.

Thursday, March 1, 2012

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.