Two Weeks Of A MS Life

Sunday (Day 1) – Left for a 5 mile run at 7:15am. At about 3.5 miles into run entire mouth goes numb. After cooling down at home the mouth has calmed down but notice there is a pulsing numbness in left foot, similar to the sensation of a cell phone vibrating. Continues throughout the day. I decide to distract myself with Mario Cart and Xbox Kinect Sports.

Monday (Day 2) – Back to work. Cell Phone Foot still present and really starting to get annoying. Mouth feels off but not too bad. Decide to contact Neurologist about symptoms. Schedule for appointment with Nurse Practitioner for Tuesday morning.

Tuesday (Day 3) – Cell Phone Foot still there. Appointment first thing. Decide I need to go on the “MS Steroids” (aka freaking high dosage of steroids) for the first time in over three to four years. I was able to get steroid pills right after appointment so jump right in. First night didn’t sleep well. Previous rounds of steroids didn’t affect sleep for a few days.

Wednesday (Day 4) – Second day of “MS Steroids”. Cell Phone Foot still there but little more distant. Feeling pretty energized from steroids which is good because first there is a full day of work then off to watch Real Madrid vs Paris Saint Germain at OSU Stadium with boyfriend, Tom and my brother, Mark. (Steroids did help me stay awake for the game…maybe a little too much because I only sleep 3.5 hours that night.)

IMG_6458.JPG

Real Madrid vs Paris Saint Germain at OSU Stadium

IMG_6457.JPG

Thursday (Day 5) – Third day of “MS Steroids”. Cell Phone Foot still there a little but easier to ignore. Feeling pretty good on energy because its second busy day. Full day of work then off to Coldplay concert at Nationwide Arena with Tom! Awesome night! Steroids helped me stay awake again but little too much. Luckily we were in the first row of the balcony so we didn’t have to stand!

IMG_6462.JPG

IMG_6465.JPG

Friday (Day 6) – Fourth day of “MS Steroids”. Back to work. Not feeling the greatest. Tired but also some cognitive fog. Also not the steadiest on my feet. End up leaving work a few hours early and my parents drive me the hour home. (My normal work commute is about 55 minutes, one way.) Spend the rest of the day in bed.

Saturday (Day 7) – Fifth and final day of “MS Steroids”. Absolutely no energy. Feel very weak and have a hard time doing basic every day functions. Have to miss my volunteer shift at CHA Animal Shelter in the afternoon. Old running injuries, IT Band and Back, start to flare and make some sitting uncomfortable. Try to rest as much as possible because my boss will be out of the office the next two weeks on vacation so I will be in charge of the sales department.

Sunday (Day 8) – First day of “normal” dosage of steroids for step down. Assist Tom with changing the oil in my car…well, I sat in a chair and handed him tools. Quickly run out for a grocery trip. Want to rip the head off anyone who gets in my way, even Tom. Stay quiet because it’s the steroids. Come home and complete exhaustion sets in. Going to the bathroom feels overwhelming. Some headaches start. IT Band and Back still hurting but found more comfortable positions.

Monday (Day 9) – Second day of “normal” steroids. Do not feel good. Probably shouldn’t be driving or going to work. Head to work. IT Band and Back still hurting so call primary physician to see if I can get an appointment. Go in that morning. PP able to prescribe me tramadol. Appears stress from steroids has caused some muscle issues and spasms. Left side of neck spasms and stiffens driving back to work from doctor. Decide to leave work early to fill tramadol prescription and to get some rest. Confusion on way tramadol script is written and doctors office already closed. Have to wait until Tuesday to get tramadol. First emotional break down happens. Tired of being in pain and feeling so weak. This isn’t the girl I know!

Tuesday (Day 10) – Third Day of “normal” steroids. Didn’t sleep well, don’t feel good. Shouldn’t be going to work but boss is on vacation. Start getting ready for work very slowly. Almost finished and ready to go then migraine hits hard. Have to admit defeat and call in. Huskies surround me before I pass out on couch.

IMG_6475.JPG

My view before I passed out on the couch Tuesday morning.

Mom comes to sit with me for first half of the day. Level of headaches, weakness and exhaustion scaring me. Probably the worse I have felt in my life. Feel I just need someone there because this shit is really starting to scare me. Tom is able to leave work and take secondhalf day shift. We are able to finally get tramadol prescription filled around 3pm. The world is a little better now, except for a headache. Talk to neurologist about all recent symptoms. They will not be putting me on steroids again. However, unfortunately, this is still in the realm of normal for steroids so I have to wait until it passes. Recommend I try not to go to work the next day.

Wednesday (Day 11) – Fourth Day of “normal” steroids. Didn’t sleep the greatest. Woke up in the middle of the night on Tuesday with extreme numbness on entire left side of my body and my entire face being numb. Able to move but felt like my leg was going to go at any time. Able to fall back asleep and felt a little better in the morning. Made it to work but left a hour early. Everyone seemed to think I looked pretty bad.

Thursday (Day 12) – Fifth Day of “normal” steroids. Feeling more like me. Able to go to work and feel somewhat normal. Left side fairly numb and face feels a little weird. Most of evening spent at home on the couch with heat pack on head with sinus pressure.

Friday (Day 13) – Sixth Day of “normal” steroids. Feeling pretty good in the morning. Hour or so into the work day whole face goes numb again. So numb I feel weird pressure on my eye sockets and on my right eye. Call neurologist because once again I am pretty scared. During their return call they inform me they are very concerned I am having some major MS activity and they would like to do an MRI as soon as possible. Of course nothing can really be done for the numbness in the face at this time. Schedule an MRI for Friday, August 12th. Finish the work day with the numb face then head home. Eat dinner then the extreme headache attacks begin. I start get series of pulsing sharp pains close to my temple. It feels like I keep getting hit in the head. It continues for probably at least an hour until we figure out it was probably caused by dehydration. After I started just downing water it starts getting better bit by bit. Eventually I am able to sleep.

Saturday (Day 14) Seventh Day of “normal” steroids. Feeling back to normal except for facing being numb. Able to walk the crazy huskies and run out to store. Have a relaxing day at home then a movie night out on our deck with a few friends.

Sunday/Today (Day 15) Eight Day of “normal” steroids. Face and left side of body is very numb. See a morning showing of Jason Bourne movie in movie recliners but then head straight home. Reality of the past few weeks has set in. Emotions up and down and sometimes not even existent. Emotional numbness…

Running and sports are what usually help me in this situation but obviously the body needs rest. No marathons or probably even half marathons for the rest of 2016. Just in a state of stun at this point. Feels like a lot of things have come crashing down in two polarizing weeks. Still hopeful, just unsure what to do next. Not sure how to fix this and get back to me.  I have seen glimpses of me the past two weeks but been very few and far between. Feel I am fighting back but this is going to be one hell of a fight this round.

 

MIA

A girl has been missing the past two years…

A girl who was tomboy and loved playing in the dirt…

IMG_4917
A girl who fell in love with soccer at a very young age…

IMG_4918.JPG

A girl who thought it was a good idea to run track and play club soccer in one season…

IMG_4912

Track Girls 2010

 

A girl who enjoyed that she was feared on the soccer field therefore was nicknamed “The Wall” and “The Rock”…

IMG_4899

Seniors and Coach 2002

A girl who left high school with some athletic awards because soccer and track were a serious business….

IMG_4911

Soccer Awards

IMG_4898

Track Awards

A girl who left to play soccer in college but developed a back injury so turned to running…

A girl who graduated college and became a woman in time to deal with her Multiple Sclerosis diagnose in 2009 when she was 25 years old…

A woman who decided to say fuck you MS and complete her first marathon in October 2010 even though she had been sick the two days leading up to the marathon…

Cbus Marathon

Right After  Columbus Marathon 2010

A woman who kept pushing to run three more marathons in 2012 including one in Dresden, Germany…

IMG_0859

Right after the Dresden Marathon with my sister Sara. I was a little tired.

A woman who vanished late 2013…

There are rumors she met a guy and moved to Columbus, Ohio…

It’s 2016…I think it’s about time I found her again…

Silence

Ok, so did not even realize it had been over two months since my last post! Wow. Guess I have really been laying down on the job. Hopefully I will be able to catch everyone who doesn’t follow me on Twitter or Facebook up to speed.

Well, for those of you who don’t follow me on Twitter or Facebook, I ended up having bursitis in my both hips. Something in my stride was definitely off and even after a shot in each hip I was still having some pain so my doctor referred me to a specialist. (The doctor he was planning on referring me to actually couldn’t get me in for four weeks so I said to hell with that and called the Sports Medicine department at OSU and they got me in two days later.) The doctor at OSU told me I could run but just no hills for a while. He also recommended that I go to physical therapy because my hip muscles were weak and that is why I was having all of these issues. I guess weak hips is pretty common with runners.

I went to physical therapy for about five to six weeks starting at the end of July. It seemed like it did help however I was absolutely exhausted during that time, especially during the week. I would feel like I finally felt better by Sunday then be exhausted by Tuesday or Wednesday again. It was rough and I was very thankful when they finally discharged me at the end of August. My hips are still sore at times and still hurt off and on during runs but seem to slowly be improving. After the Dresden Marathon I am definitely taking some time off and maybe just doing some minor workouts. My body definitely needs to heal.

Obviously as I said it has been over two months since I the last time I posted on here but sometimes I have taken a while between posts on Facebook/Twitter as well. It seems like the hip injuries have messed with me mentally a little more than I would like. Sometimes I would think of writing an update and just wouldn’t write it. I don’t know if it is the pain, frustration or exhaustion that really does it or if I have just been feeling the pressure of the Dresden Marathon and going to Europe. I have had a few issues here and there during my training the past month but it didn’t seem like that was really the problem. It has been a little odd at times and I don’t feel completely back to normal yet but hopefully I will get back on the bandwagon again soon.

Hope everyone has been doing well! Hope everyone’s training and races have been going well!

A Short Break

The past few weeks have been fun, stressful and exhausting. The little amount of sleep and stress finally got to me this past weekend and that is why you haven’t heard from me on here or even on FB and Twitter for a few days. I still don’t even feel like I have recovered now but work has calmed down some so life is somewhat better.

I still have electricity if that is what everyone is assuming is one of the issues since it is all over the news how many people are still without it. I did loose electricity on Friday, however it was only for four hours, I was one of the lucky ones I guess. I did however have some flooding in my basement on Sunday night which caused some water damage to a few things that were stored down there but nothing I was really upset about. It was just stressful trying to save a few things.

Now on to the bigger issue at hand. On Sunday morning I went out for my 13 mile run and only made it about 1.5 miles before I was having quite a bit of pain in my right hip that I could not stretch out and didn’t seem like it would get better if I pushed on. I decided to call it quits there and just swim later in the day at the gym. I didn’t really feel any pain when I was walking just when I was running and occasionally when I was sitting. I iced my hip on Sunday and took some ibuprofen but still decided to take off Monday just to give it some more time to hopefully heal. I was still feeling some discomfort on Tuesday morning so I decided to try cycling instead which went very well however it still didn’t overly feel like it was healing. Since I have two big races in the fall (Air Force Marathon and Dresden (Germany) Marathon) I called my doctor’s office shortly after they opened because I wanted to hopefully figure this out quickly so it would heal quickly.  They ended up having a cancellation yesterday so they were able to fit me in which was wonderful. I discussed a few different symptoms I have had over the past few weeks to my doctor and he diagnosed me with trochanteric bursitis. Basically one of the sacs that protects my muscles, tendons, etc from being damaged by my hip joint is inflamed probably due to either my change in workout or change in my stride/cadence due to my numbness in my left leg. He gave me a shot of steroids right into my hip and told me to rest for three days which is a little rough to take but hopefully this will help and I will be back training this weekend.  I hope!

Germany Here I Come!

I am very excited to announce that I received a phone call this afternoon from Darris Blackford (Director of The Columbus Marathon) inviting me to run in The Dresden Marathon in October! Of course I said yes so I will be heading to Germany in October. I am so excited I could barely focus to get back to work. I am really looking forward to running this marathon, seeing Germany and possibly some other countries as well!

Great News Before The Marathon

I wasn’t planning on writing anything until after the marathon but ended up receiving some great news today. (Other then I am feeling back to normal now) I found out a few weeks ago that my insurance wasn’t going to cover the Rituxan so I applied for assistance through Genentech Access Solutions. I found out this afternoon that they will be covering the entire cost of the Rituxan! I will still have to cover the infusion clinic costs which the insurance will help cover but that was such a relief to hear! Just great news to receive two days before my marathon!

A Change Would Do You Good…

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!