Just a quick update! I am starting to feel back to “normal”…meaning the MS has calmed down and gone back to the “normal” everyday symptoms so I’m not great but better. Just after I started feeling better from the steroids last week I got hit with an annoying summer cold. The cold made staying very still for my MRI on Friday a lot of fun. I am still struggling with the cold, but I did find out today that even though I had all these crazy symptoms recently that there was no new progression on my MRI from Friday!!! Very happy to hear this, but does have me a little concerned that I still had these new symptoms. Guess time will tell if these new symptoms were caused by the stress of the steroids or something else. Hope to get over this cold very soon and get back to running! Watching all these Olympics is making me itching to get back out there!
That is all for today. I hope to get back into blogging more as just sharing my story Two Weeks of a MS Life seemed to really help me deal with all those emotions. It also seemed to help a few people realize they aren’t alone in this crazy MS fight! Fingers crossed I can keep it up!
Numbness…I never asked you to stay
Yet here you are day after day
You started in the leg, then the arm and now the face
I really want you to get the hell out of this place
I really wish you would leave so I felt better
I would even promise to write you a letter
It would even be great if you just let me run
I know most don’t believe me but it can be quite fun
I don’t mean to be rude but I really wouldn’t miss you a bit
Actually…if no one was looking I would probably give you a punch and a hit
So I really would like if you thought it over, the part about you leaving you see
Because you really aren’t nice to live with, but that could be just me
Well, needless to say I have been pretty quiet lately. I am kicking myself for still not posting about my trip yet but I think I have been fighting some inner demons since the end of November which in turn has given me some writers block. (Funny since I am really just retelling my life, I am not trying to write a short story for English class or something.) I am sure the clinical diagnosis would be something like mild depression but I have been referring to it as inner demons. In December my running decreased to try to “repair” my hips, stress at work increased and numbness/pain on the left side increased. Obviously not a good combination to try to fight your demons.
Two weeks ago life got even more difficult. Since I had been struggling with the numbness and pain on the left side for a few weeks my neurologist decided to prescribe me the fun five days of steroids. The last few times I had steroids it was only a three-day round however the last time I did have a five-day dose I don’t remember having the difficulties I had this last week. Every night I average 5-6 hours of sleep (I am use to getting at least 8 hours). I am not sure if the stress of work added to the lack of sleep but the mix of taking the steroids and lack of sleep really messed with me during the day. It ended up pushing me to my limits and I had to call my Mom to come over to help me take care of my three crazy huskies one night. I just had zero energy and I felt like I couldn’t even take care of myself. Just going to the next room felt like someone asked me to run a marathon. I did end up making it through the work week and caught up on sleep that weekend.
The beginning of this week I felt like I was starting to feel normal again except that I was still having the numbness and pain on the left side. I was making it through the week with the sleeping fairly well but still feeling worn down. Wednesday I started feeling some pretty bad sinus pressure on the left side of my head and I thought it was just due to our lovely Ohio weather. It continued into Thursday and it started to feel a little more intense in the early afternoon. At this time I started to feel numbness in my cheek and occasionally in my month and tongue. This freaked me out a little as I had never had my tongue go numb. I called my neurologist office and left a message that I wanted to speak to someone about this. I wasn’t sure what was going on but thought I probably had some sinus issues and it was just putting pressure on a nerve that has already been damaged by…well, me (or I guess really my body attacking my nerves because for some reason it doesn’t like them). Well, after talking to someone at my neurologist office it turns out I am having another relapse but one that is focused more on the left side of my head. We came to this conclusion because of my symptoms and that I wasn’t having any drainage or cold-like symptoms so we basically eliminated the actual sinus issues.
I was a little upset after hearing it was probably another relapse. I was also upset to hear that they strongly suggested that I take it easy this weekend if possible. I tried to take it easy but it is hard for me to sit still especially when there are things to do, which there always are in my house. Plus I really wanted to get back to running this weekend. Well, tomorrow is the start of a new work week and hopefully can I focus on getting more sleep this week. And maybe finally posingt about my trip to Europe! New Post: Paris!
First night in Paris (And oddly enough me on only one hour of sleep and feeling pretty good. It was probably the Paris high or something.)
Song Of The Post: “A Change Would Do You Good” By Sheryl Crow
Another crazy few weeks! January is just flying by! Just bust, busy, busy! I thought I would write a quick post just to let everyone know I have officially decided to go off of Tysabri and go on Gilenya. I have discussed this quite a bit in some of my posts so no real big surprise here. However, I didn’t realize how much was involved to go on Gilenya. Switching to Gilenya comes with more blood work, EKG, and several doctor’s visits with different specialist. I have the blood work, EKG and one doctor visit down, just two more doctor visits to go! Hopefully I will be starting on Gilenya sometime in February and feel pretty good about it. The only thing I am concerned about it is that it seems that most people have more headaches during the first month or two but think it will be worth it for having the piece of mind of not being on Tysabri anymore. However, despite me not liking Tysabri, my MRIs showed that I didn’t have any progression while I was on Tysabri so that is great news. Hopefully it will stay that way on Gilenya.
I did receive some bad news during my visit with my neurologist, the numbness on my left side is going to be considered part of my baseline now since it has been constant for the past year. All I can do is stay on my Gabapentin and Carbamazepine and try to keep it in check. I had pretty much come to this conclusion myself but it’s still is never easy to hear it said out loud.
I have started up marathon training again in hopes of running the Kentucky Derby Festival Marathon on April 28 in Louisville, KY. I went to Louisville to go ziplining in the MegaCaverns (which was AWESOME) so looking forward to going back and maybe spending a little more time in Louisville. The training has been going pretty good except some pain in the knees and my right foot that I need to keep an eye on. I believe the pain is mainly due to how I sit at my desk at work so need to pay more attention what I do with my legs and feet.
Well, hopefully things will calm down some so I can actually write about some things I have been meaning to write about for quite a while now. Try to stay warm out there!
Song of the Post: “Fallen” by Sarah McLachlan
I started out this year planning to do at least two marathons. Well, due to MS issues in the
spring and my over training during the summer causing me to get plantar fasciitis, it didn’t happen. However, I was still able to knock out five 5ks (including a new 5k PR), two half marathons and one 10k mud run. I guess not too bad considering the circumstances. It still is hard for the competitor in me to be ok with this but I have to listen to my body.
Speaking about listening to the body, my left side is still not being very pleasant. The past week or so the numbness and pain on the left side has really flared up again. It looks as though they will be keeping me on the higher dosage of Gabapentin and giving me something else that will hopefully help. Usually I have been able to kind of push through this or just kind of blow it off but this time it is kind of dragging me down a little which is a little odd considering my training and competitive season is over. One would think it would be more mentally wearing during the training season rather than after. I can be lazy now. I can sleep in and relax. I don’t have to worry about running 10 miles tomorrow. I think it has just been a long year fighting the left side issues and it is starting to wear me down a little. Trying to stay pumped and positive that hopefully 2012 will be a marathon (and triathlon) year for me but little hard right now.
It has been over a year now since my left leg starting being numb after the Columbus Marathon last year so now I am really starting to think that my left side issues might be here to stay. We might not have a medication or treatment that will decrease it and allow me to feel “normal” for more than a few weeks. It kind of wears on me a bit and makes me wonder how my training will go next year. Will I constantly be fighting this?
I was planning on my next post being about the Columbus Half Marathon but this is what I was feeling at the time I decided to finally sit down and type so decided just to let the fingers work. Hopefully will have that post sometime this weekend.
Song Of the Post: “Ice Cream” By Sarah McLachlan
Ice cream for breakfast…its what you dreamed of having every morning as a kid. My mother always loves telling us what our grandmother (her mother) would say when we stayed at her house: “You are at Grandma’s house, you can have whatever you want for breakfast. If you want ice cream for breakfast you can have ice cream for breakfast.” Drove my mother nuts. Of course when you get older and you move out on your own you may have ice cream for breakfast a few times to rebel but then you usually realize that it really wasn’t the greatest idea after all.
Well, the past few days the pain and numbness on my left side has really increased. I finally gave in yesterday and decided to go on steroids again, I just couldn’t take it anymore. I have pain while I am at work then I come home where I have a list of things I would like to do but I am already in pain and worn out from the day so I don’t want to do anything. Plus I want to get running again and its hard to walk out that door to run when you are already in pain or your leg is numb or both.
Enough of the pain and numbness talk, let’s get back to the ice cream. If you don’t have MS or have MS but are lucky enough to not have had to take steroids yet, you do not know the amount of steroids doctors usually prescribe to hopefully help you get over a relapse (or at least make it shorter). The pill option they will usually prescribe is anywhere from one to five days of 25 pills of 50mg of prednisone each day. (If you have a more old school pharmacy nearby you might luck out with one horse pill a day. I had this last time.) This is where the ice cream comes in (at least for me). I cannot stand the taste of these pills so I need something to take with it to mask the taste. During my first set of steroids like this I tried just taking them with milk, that definitely didn’t work. Then I tried taking them with some yogurt and that didn’t help much either. Finally I spoke to the nurse practitioner at my doctors office and she suggested I try eating them with ice cream or a smoothie to mask the taste. So when it comes time to take these lovely steroids, I switch up my normal cereal and yogurt for a little bit of cereal and ice cream and steroids. Its just not as fun anymore…but I guess it is still an excuse to eat ice cream for breakfast. 🙂 Hey, if you want to use me as excuse tomorrow morning to eat ice cream for breakfast to”feel my pain” on my first day of steroids I will understand. 😉
Song of the Post: “Somewhere A Clock is Ticking” by Snow Patrol
Since this is completely a different subject then my post on Thursday, I figured I would break it off into another post.
I guess the second downer this week came on Monday morning. I had a checkup with the NP at my doctors office about my Tysabri treatments. For those of you who know little about Tysabri the major (and most discussed) possible side effect of the treatment is getting a brain infection usually referred to as PML. There is no cure for this brain infection and it has caused deaths in about 20% of those who got PML while on Tysabri. During the appointment she did inform me that the number of people who are on Tysabri and have gotten this brain infection has increased which means my chances of getting PML after a year or two of exposure has increased as well.
Well, before we get to ahead of ourselves let’s go back a little further to October 2010. On Sunday, October 17th I finished my first marathon. Approximately a week and half later I had my third relapse in a year. I had been taking Copaxone for about 13 months at that point so obviously my doctor was not happy to see my MRI’s or to hear about another relapse when I had a checkup with him at the beginning of November. He informed me at that point that he was going to take me off of Copaxone as it appeared I was one of the unlucky few that it did not work for. Since my MS was still progressing too much he wanted to put me on either Tysabri or the brand new drug Gilenya. It was obvious by the way he and the NP talked that they wanted me to go on Tysabri and not Gilenya but the big side effect of possibly dying does make one take a pause. I first took the rest of the day off. I was suppose to go into work after my morning appointment but figured the almost non-stop crying and just staring off into space would not help me or others be productive at work.
I went over my options for the next few weeks and of course when I made a decision to go on Tysabri I found out that I had the JC virus which increases your chance of getting PML. They recently came out with a blood test to help determine if you have the JC virus and I came up positive. Of course that pushed off my final decision another week but I still ended up deciding to take Tysabri as Gilenya had only been on the market for about a month. It was not an easy decision for me to make, eventually all I could go with is that Tysabri has been around longer and even though it can cause PML they knew a lot more about it. There isn’t many surprises with Tysabri and who knows if Gilenya could be as deadly or have other complications after few years of exposure. The test trials only lasted two years.
In about two weeks I will be going to the infusion clinic for my 7th infusion of Tysabri. Yeah, it is nice not having to give myself a painful shot once a day but driving a hour one way every four weeks and having to sit still for two hours and missing a half day of work isn’t the greatest feeling either. When I made the decision to go on Tysabri in December I agreed to only go on it for a year. The past few months I had started to waiver on that as I was not sure I would want to go on Gilenya. Now after Monday’s appointment I feel I’m back between a rock and a hard place. I am definitely leaning back towards not wanting to stay on Tysabri for more than a year after hearing the new statistics for people getting PML while on Tysabri. However, on the plus side I have heard I may have some more options when I hit my year anniversary with Tysabri as there are many new drugs up for FDA approval. I plan on doing everything I can to stop or at least decrease the progression of my MS but how far do you take it before the risk outweighs the reward?