Sunday, October 30, 2011

They see me Rollin', they hatin'

I have been using those electric carts at the grocery store for at least a month now and I have discovered that they universally suck. I will admit it was fun the first time or two (I do think jousting in these would be fun) but the novelty quickly wore off.

This is what the stores should provide but with a basket of course
There is always something wrong with these carts. Sometimes they have wheels that are more squarish than round or the reverse shifter is broke. I really love the ones that just shut down if you move slightly in the seat. Great "feature". The general maneuverability is amazing. It only takes 6 turns, if you are lucky, to make a u-turn in an aisle. Honestly, the only people that are good drivers in these things have Go Go Gadget arms and the ability to parallel park a semi.

What really bothers me about this carts is the other people in the store. These carts can't just scoot to the side like normal carts. And yet, people expect them to. There must be some unwritten rule where etiquette no longer dictates that you move if someone says excuse me while they are in an electric cart. I have accidentally almost taken out several displays because the aisles are too narrow. I should have taken out a few shoppers who decided to cut my cart off but I haven't. Have I mentioned how the carts shut off if you suddenly stop?

Perhaps the worst part is the people who say that I don't need the cart. Most days all I can manage to walk is to where they keep the electric carts. I will gladly not use the barely operating scooters just as soon as you cure my MS. That is what I should reply to those people but usually I'm too busy concentrating on not accidentally plowing into their shins. I'd like to be able to visit the grocery store without people judging me.

There are many invisible disabilities a person could have that necessitate using an electric cart. Please don't make comments or give dirty looks just because it doesn't look like that person needs it. Please try to give these malfunctioning device operators a bit more room.
Oh and teenage boys, pull up your pants! No one wants to see your boxers and certainly not at eye level.

This has been your public service announcement. You will now be returned to your regularly scheduled programming.

Thursday, October 27, 2011

Some people have been wondering what my MS is like. It is a bit hard to describe because it seems like my symptoms are constantly coming or going.

I have relapsing remitting MS. I have been experiencing a flare up or a relapse since September. I have been on IV and oral steroids to try to calm the inflammation down. Hopefully soon I will be starting on Gileyna and that will lower the number of flare ups.

Since this flare up has started I have not been able to drive. My feet are numb and my legs are tingly. I have muscle weakness and spasms which make it difficult for me to stand or walk for long periods of time. The spasticity can make it difficult for me to fully extend my legs. I used to have this in my hands as well but the last course of steroids relieved that. I still have some problems with grip strength or numbness in my hands but it is no longer constant. As a result of the numbness and muscle tightness sometimes it looks like I'm drunk when I walk. I was never very coordinated before but now it looks like I belong to the ministries of silly walks when I try to walk on a line. 




I take a lot of random naps. Sadly, I don't think I have been able to stay awake for the entirety of a Packer game yet. Of course then when it is bed time I can't sleep. The steroids pretty much make it impossible to sleep without medication. Simple tasks like loading the dish washer can wipe me out.

I was mixing up my sentence order and swapping words but the last course of steroids seem to have eliminated that. My short term memory seems to have benefited as well.

It has been a long month+ since this flare up has started. It can be hard for me to remember that as bad as I feel sometimes now, that it used to me a lot worse. Things are slowly getting better. If I were to have my choice of what were to come back I would pick driving occasionally so I won't have to wait hours for a ride to the doctors. I'd also really like to be able to climb a tree stand in a month for deer hunting but that goal seems pretty far off right now.

Monday, October 24, 2011

I'm a food werewolf


I am a food werewolf. I feel bad for the innocent bystanders on Friday. I wasn't allowed to eat because I got to enjoy a colonoscopy and an endoscopy. I was very cranky and I apologize to the nurses and my husband. Turns out not eating or sleeping at all during a relapse makes my MS REALLY bad. When it was time to leave, my entire body hurt. Even the muscles in my tongue felt strained. Everything hurt. Spending 10 minutes asking me if my pain is a 9 or a 10 doesn't make me feel any better. Those pain scales mean nothing. Here is a much more accurate pain scale. The funny thing is that I wasn't even necessarily looking for pain meds, I really just wanted them to stop asking me questions. Thankfully once I ate and slept some I felt much better. I'm adding that experience to the "I'm never doing that again" list.

Appointment with the neurologoist went well. After talking to the doctor for a little bit it seemed pretty clear that there really is no way to compare all the medications head to head and the way I did it was the best method possible. As it turns out the medicines are all pretty similar so I was anguishing for nothing. Right now it is hard to know how an individual will respond to any given treatment. Until we know how treatments will work for individual patients, the only approach is guess and check. Since everything seemed so similiar I decided that I would try the magic pill, Gileyna. Now I just have to make sure that my heart can handle it and hopefully I will be on my new meds soon.

But of course it is never that's easy. I have to get my eyes checked out as well and I can't get an appointment for a month. I knew there would be delays no matter what and I'm trying not to let it bother me. Pending there are no hang ups from insurance, the drug company, and my test results hopefully I will start my medication within a month. Just give me my drugs already, geez.

We also learned that the random vertigo and motion sickness stuff I was experiencing at the beginning of the year was caused by another relapse. It is kinda weird to look at a MRI scan of your brain and know that the cloudy area on your brain stem is what made you so sick.

Please forgive any spelling or grammatical errors. Just got an iPad (free thanks to the hubby's work) and I am still getting used to typing on it. It does make using the computer a lot easier on me. Using a regular keyboard before was making my hands hurt a lot because of spasticity issues that were making it difficult for me to open or use my hands. It is also convenient timing since I recently broke the hubby's laptop when I couldn't feel my hands. Oops...

Thursday, October 20, 2011

Decision Time

In a few hours I'm supposed to meet with my neurologist to discuss what medication I should go on. I'm grateful with the doctor giving me the choice between 4 medications (Avonex, Rebif, Gilenya, and Copaxone) because I know that it will make me more likely to follow through on the treatment. However, I almost wish he didn't since I feel like this is the most indecisive I have ever been. I researched all my options and the more I dig into it the more they all seem the same. I have used charts and statistical analysis to help me to try to compare the medications and their effectiveness. The engineer in me was expecting this to show me the answer. I don't like that there doesn't seem to be an obvious choice. Drug manufacturers, I'm on to you and your manipulating your study results to make it seem like your drug is better. The things that you are comparing are apples and oranges apart.

My analysis shows me that Gilenya and Copaxone have relatively the same results when it comes to "stopping" MS. They both have different pluses and minuses when it comes to things like safety and convenience but ultimately both drugs are pretty similar. Gilenya seems like a magic pill. Maybe it is but it just seems too good to be true.

I don't really want to give myself a shot everyday but I keep telling myself if that is what is best then I will do it. The fact remains that I don't want to and the closer we get to decision time the more I have developed a strong resistance against doing so. Why should I have to deal with shots and what not when I can just take a pill every day? Can it really be that easy?

No answer here
I need some pretty graph to show me the answer.

Monday, October 17, 2011

How I got MS

And the answer is...? No one really knows. But no one really knows what causes MS in general. No one else in my family has MS; although MS isn't hereditary, people with close family members that have MS are more likely to have it then the general population. Women have MS at rates double to that of men so that certainly didn't help my odds. MS seems to occur less frequently in populations that live near the Equator so growing up in the Midwest doesn't really help there. I had a pretty bad case of Mono a few years ago which may have increased my odds. And then there is this new theory that working all those late nights may have put me at risk.

Despite however I may have ended up with MS, I was officially diagnosed about two weeks ago. In the beginning of September, I started experiencing numbness and tingling in my legs. It progressed up to my ribs. I was able to see a doctor fairly quickly and was referred to a neurologist. The neurologist did some tests to check for nerve damage and after not finding any he ordered several blood tests and a MRI. I didn't have Lyme disease or Lupus. The MRI showed that I had 2 lesions on my spinal cord. These lesions are basically scars (see the About Multiple Sclerosis page for more information). One of these lesions was showing active inflammation which is what is causing most of my symptoms. I also had a brain MRI done. This showed "several" inactive lesions and 2 or 3 very small active ones.

We know that the issues I had last year at my wedding (mostly numbness and tingling) were caused by an MS attack or flare up. This may not have been the first attack I have had. It is possible that what was suspected as tendonitis in my knee a few years ago was an attack as well. It is impossible to match up attacks and lesions that show up on the MRI scans. And I could have an attack without an active lesion showing up.

Overall, the time it took to diagnose my MS was very quick. It takes some people decades to find this out so I'm glad that I can move onto treating instead of still being stuck in limbo land. I chanced upon some great doctors who took immediate action instead of just waiting and seeing. I really like my neurologist so far who just happens to specialize in MS. I don't really know why I ended up with him as my doctor as he isn't supposed to be accepting new patients but I'm glad I did.