Back To “Normal”…Well, Almost.

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!

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.)

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Real Madrid vs Paris Saint Germain at OSU Stadium

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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!

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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.

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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.

 

I am still here…well, kind of…

I know I have been quiet for quite a while now. I have been trying to find the time, energy and right mood to actually write a post. This hasn’t been an easy thing to come by the past few months.

After my quarter marathon and marathon relay in May, I decided to take some time off to heal the knee and other minor injuries I was fighting. Well, that time off was suppose to be about a month. Right now it is still indefinite. The first month or so I was feeling pretty normal and had a lot of things going on. I went to the Bonnarroo Music Festival in Tennessee in June and I was a bridesmaid in one of my best friend’s wedding in July. It was in July when I started to notice some MS symptoms really staying around and not going away. Of course work did get more stressful in July which has not helped the MS situation either. To this day I am still having MS symptoms everyday, usually in my left arm, left leg and left side of my face. We have increased my meds (again) but I am still having issues. I go back for a check up in a little over a week and something needs to change. I can’t run or workout which takes away one of my big stress relievers and mood boosters.

It’s been hard staying positive but hearing every once in a while from my readers (aka you 🙂 ) lifts my spirits. Keep running and moving! I hope to be out there with you again soon! 🙂 Until then I will try to check in every once in a while to update everyone on my status or to share some interesting MS info. Good luck out there!

Status report…

Numbness: Still present
Pain: Comes and goes
Depression: Mild
Frustration: Still present
Stress at work: Still present
Paris post: Still unwritten
Knitting project: Unfinished
Hair: 6″-8″ shorter

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3 Siberian Huskies: Crazy and shedding
Running: Going Ok (Over slept this morning :-/ )
Swimming: Ok, need to work on breathing
Feelings about stepping down off of Gabapentin which might cause more numbness: Not looking forward to it
Feelings about finding something that might work: Hopeful
Current overall feelings: Maybe I need another vacation or even just time off…

Self prescription to maybe forget it all for a night: Turn the music up as loud as I can and dance it out.

My Ode To Numbness

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

A Run In The Snow…

Decided to try something new this morning and run on the bike path after we got a couple inches of snow last night. It was interesting to try something new and for the most part I really enjoyed it. It was a beautiful run but very exhausting. I have been experiencing more numbness on my left side the past few days which slowed me down some and I am sure add to the exhaustion factor. A highlight of the run was seeing a deer jump across the bike path however it was not during one of the times I had stopped to take a picture. 😦 It would have been an awesome pic! But as you can see I did capture some animal tracks as well as shoe prints from a runner who had came before me. It is something I would definitely do again! (Might just wait until the left side is a little better though).

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!