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Monday, July 28, 2014

I came out of the M.S. Closet

Beautiful day here in Ohio today.  The husband and I went to the park and ran our usual three mile trail.  It felt so great to get out and stretch my legs and fill my lungs with fresh air.  It was not my easiest run, I was struggling to stay steady.  It was better than last week though.

I was less than mobile last week and didn't get any runs in.  I did however walk one and half miles one day.  It took me 51 minutes.  It was still an accomplishment for me because I actually went to the park and used my cane.  I have always been very reluctant to "just walk" in front of the regulars I see at the park.  Silly pride.  I'll be sure to bring it up in confession next time I go.  Going out there and bringing my cane was a big deal. This was the day I would come out of the MS closet to my fellow regular park goers. Of course I had the questions "what happened?"  "what did you do?".   I just took a deep breath and said "well, I have M.S. and sometimes I have bad days when my legs won't work properly and this is one of those days".  After the initial shock and exclamations of "you run so much though", "you're so young" and the ever popular "you don't look sick", I answered many questions, and I had to explain that the times they don't see me at the park are not because I'm on vacation.  Those are usually my off days and I was uncomfortable coming out with my cane.  I received so much love and encouragement.  I had an older runner that I always try to pace with, but never can, tell me I was his hero.  It was a humbling experience.

Once I got on the trail I took  the slow pace to really take in my surroundings.  I forgot how beautiful the sun on the pond looks.  I haven't really looked at the wildflowers in the fields in a long time.  The squirrels and chipmunks play chicken with me on my runs, but just strolling along they don't even pay me any mind.  I was able to forget my cane and drunken stride and take it all in. I was pretty whipped for the rest of the day after that.

While 51 minutes to walk one and a half miles may seem somewhat excessive to one person, it was time well spent to me.

Enjoying the view of the pond.

*Side note here.  I had a ear and eye infection and was running a low grade fever.  That is what caused my symptoms. I had what my neuro calls a pseudo-relapse.  Once I got the infection cleared my symptoms went away fairly quickly.  Remember to pay attention to your body and if any feels off call your doctor.  Some people may be able to "gut it out", but not us.  

Wednesday, July 23, 2014

Do you know when a relapse is coming on?

I had quite a melt down two days ago.  It was doozy.

 My life sucks, I have no friends, nobody cares about me, if I disappear right now no one would even notice until they run out of towels. I'm a horrible Ma because I didn't make dinner.  Everyone deserves better that me. Running is stupid.  My blog is stupid.  I'm stupid.  I shouldn't try to give people hope or advice because I suck.

You know that kind of poor me drivel complete with the torrent of tears coursing down my face and me wiping my nose on the front of my shirt.   Yeah, gross, but you get the picture.  The problem is those kinds of melt downs are a foreshadowing of a imminent relapse.   My husband pointed it out years ago that although I am an emotional person by nature, when I go into full-on life is hopeless, ugly cry mode then something is coming.  It usually happens when I have overdone and pushed myself beyond my limits.  Everything starts to hurt more.  My left shoulder blade is the worst.  My family hate when I start to say my shoulder aches because they know they will all be hit up to rub it.  When I say rub it I mean stick your elbow on the spot until I bruise.  The everyday noises of TV and conversation make me feel edgy.  The fatigue becomes crippling.  My symptoms don't always end in relapse. If I slow down and keep myself cool and stress free I can sometimes head it off.  My issue is that  I don't always listen to my body or my husband.

I am hoping this coming week I can stave off a major relapse.  Swimmer Girl has a swim meet this weekend a few hours away and I am not going.  It makes me sad, but my husband is going.   Honestly I think they need to spend some time together anyhow.  She's sixteen and knows soooooooo much more than he does.  Oy, that is another blog. I'm just going to rest.  I also noticed my diet needs some tweeking.  Too much sugar and simple carbs tend to do an number on my system and exaggerate my symptoms.  I can't help it though, who can walk past a bag of peppermint patties and not want to "taste the sensation".  It will be back to swiss chard, and kale for me.  They have very strong anti-inflammatory properties. Combine with steamed or grilled fish and you have a filling and yummy meal.  I have been up to my ears in zucchini so I chop one up and toss in, super yums.


Are there symptoms that you have, that tell you to slow down or a relapse is coming?
Do you always listen to your body?
 Do you find that diet plays a part in managing your symptoms?

Saturday, July 19, 2014

Because M.S. can't stop me


I finally put this on my car.  I had it made about six months ago after I ran my very half marathon.  I never put it on the car.  I put it in on hanging inbox, and looked at it everyday, but never put it on the car.  

I'm not shy about talking about my M.S., but putting this on my car is an advertisement in a way.  I wasn't ready to deal  with being that open about my diagnosis.  I also didn't want to come off as some uber motivational person who can "do anything she sets her mind to and you should to", because that is not me. I do want people to know M.S. doesn't have to stop you from doing things.  It may alter how you go about achieving them, but it shouldn't be the reason you don't even try.   I wanted to try and see if I could do it so I did.  Will I ever run another half marathon?  Probably not, but not because of M.S., because I just really didn't enjoy the training process.  The constant worry that I was going to have relapse was always in the back of my mind.  It was simply to much pressure for me.  I love to run shorter races, 5k, 10k, and I will stick with those.

Multiple Sclerosis can't stop me from living my life.  I hope it doesn't stop you either.


Thursday, July 17, 2014

exhusted....

Fatigue is a big symptom for those of us with Multiple Sclerosis.  In my opinion it can be as debilitating as not being able to walk or see properly.  People don't always understand when you tell them "I'm tired".  They often reply, "Me too" or "yeah, I didn't sleep well last either last night"  I for one do not want to come off as a drama queen and say "no, I mean I know I just got up an hour ago, after a full 10hrs of sleep,  but I need to go back to bed before I fall on my face, but the thought of dragging my body the 20 feet to my bed makes me want to curl up into a ball and cry."

I only have so much energy and when I run in the morning I use up most of my allotment in those 3-5 miles. Then the rest of my day is shot for the most part. I have to really pick and choose my projects
I hate being tired. I have stuff to do you know.  I mean come on, I don't work so my house should be pristine.  It's not.  I should be sewing, or painting, or cleaning something, but I right now I can't even think about getting out of this chair to get a glass of water.  Seriously kicking myself right now for not teaching my dogs how to use the automatic water/ice dispenser on the fridge.

It's not just the physical aspect of fatigue that gets to me.  I am so fuzzy in the brain I have a hard time reading for any length of time because my comprehension skills are nil.  God forbid I have to pick someone up from somewhere at a certain time. Wow that was top notch writing right there. Brain fuzz.  Just listening to my daughters talk about their day wears me out, never mind actually participating in the conversation.  "Wait, you mean I have two kids? Oh right, right..." 

I know people say "take a nap".  I hate naps. "WHAT?" you say. "Who hates naps?",you ask incredulously.  Me. I'll say it again. I. Hate. Naps.  I always feel like a schlub  napping when I know my husband is at work busting his cute little tush.  I have one job, take care of the house. When I'm napping I'm not doing dishes, laundry, and that sweeper doesn't run itself.  Damn, now I'm kicking myself for not getting a Roomba.   

I tend to have varying degrees of fatigue.  I'm not always completely useless for days on end, but I always have to plan my energy expenditure very carefully.  It's very frustrating to me because I would love to be a little more spontaneous, but spontaneity takes energy.  Maybe I should just give myself a break, teach the dogs how to use the water dispenser, buy a Roomba and take a nap.

Monday, July 14, 2014

23 years ago this week

This week marks a turning point in my life.  It is not a birthday to be celebrated,  although one could argue it helped usher in the birth of the adult I was to become.  It is not an anniversary to be congratulated for.  This week is more like the remembrance of a loved one passed on.
Twenty three years ago this week I was diagnosed with Multiple Sclerosis.

I was twenty years old and living with my boyfriend, now husband, and completely overwhelmed with a diagnosis for a disease that I had no idea what it even was. One day I was having a great time partying with friends, swimming and boating on the lake and the next day I was completely blind in my right eye.  What the Hell?  After what felt like a million tests, MRIs, spinal tap, weird electrode thingy-ma-jobbies taped to my head, and blood tests, I sat  in my doctors office and he said "You have Multiple Sclerosis"  He might as well have said "you have yadayadayada" because that is what my twenty year old brain heard.

Needless to say twenty three years later, I now know all to well what Multiple Sclerosis is what it has meant to live with this diagnosis.  Live is just what I did and continue to do.  Sure I had some bumps in the road during this journey, but who hasn't. I have had to learn how to deal with doctors and other professionals to become my own best advocate and fight for the care I deserve. I became stronger than I could ever imagine. I had epic meltdowns. I remember one very specific hospital stay early in my diagnosis. Around 3a.m I was on the "steroid march of anger" (more like limp of the gimp to be honest) to the nurses station with my hospital gown all flapping in the wind because they were going to take "THIS FUCKING IV OUT OF MY ARM RIGHT NOW!!!!!!"  "I am NOT doing this push ever again". Of course I would find myself back in the hospital many times after that. I fired my first Neurologist because every time I walked into his office he acted like I was new patient and had no idea who I was after 8 years. On the day of his dismissal he left me sitting in his office and refused to see me, unable to walk, pee, or see out of my right eye because there was an insurance change that his office personnel did not know how to handle. I have gone through many types of medications and endured countless side effects.  I have been depressed, angry, hateful, and wildly jealous of "healthy" people.

 On the flip side I have been able to have some pretty great things happen in my life, like marrying my high school sweet heart and having two wonderful daughters. I run! Not fast or pretty or everyday, sometimes not even every week, but I can still do it and I am proud that I can. I may not have been able to finish my Horticulture degree due to M.S. years ago, but the knowledge I aquired is with me forever. I have a beautiful yard with gardens and loads of wildlife. It gets weedy sometimes because I don't have to energy to clean it up, but I planted everything myself and it flourishes.  I wish I had planned for the time that I had to stop working.  Being "retired" at only forty three years old has not been easy on my ego or pocket book. That part is a work in progress for sure.

 This journey has not been easy, and I am not going to sugar coat my life because it is still very hard sometimes,  but I found a way to make it my own and live my life the way I wanted.  My hope for anyone reading this is that you will see M.S. is a diagnosis that can change your life, but in the end you are still the one in charge. Please don't give into the despair you will inevitably feel some days.  It can get better.





Friday, July 4, 2014

Did not lose my runnners card

I ran my personal best 32.23 this morning and it felt fan-freaking-tastic! Here are a few things I learned about myself today at the Starr Spangled 5k race this morning.

 There is a group of ladies that run all the local races and we call them the "skirt girls". They wear these tiny little matching skirt outfits coordinated with the event. Full  makeup that never melts.  They never seem to sweat.  They "glow".  All the guys go completely gaga over them. They are gorgeous, and they are fast.  I hate them.  No, not really.  I say I hate them, but secretly I want to be a "skirt girl".

 I am much more competitive than I ever realized. I also hold on to stuff for waaaaayyyyy to long.  I saw my grade school nemesis, arch enemy, frenemy whatever you call her I wanted to beat her.  She was the girl who was always one step ahead of me in school.  In grade school everything we did was in alphabetical order.  Lines to go to the bathroom, lunch lines, who got to read first in class were always  done in alphabetical order. Our last names were similar hers started with BR and mine was BU so even when we were in line she was ahead of me. Her mom was the Room Mom every year.  Her older sister was the lunch monitor. My cousins/brothers were trouble makers and the only times my parents were at school were to meet with the principle. High school was much the same and now our kids go to school together.  I wanted to beat her bad.  I did not care about personal best or having a good time I wanted to beat this chick.  I kept scanning the crowd to make sure she didn't pass me.  I felt awesome because I never saw her pass me and I was pretty sure she didn't queue in the front.  I crossed the finish line feeling awesome.  Then I found out she didn't even run! Haha. Motivation, insanity, whatever you call it I got across the finish line happy.

I don't mind coming in after my husband because I always have a cheering section waiting for me at the finish line.

I love it when my husband passes by me during an out and back race and we high five. It's romantic.  I know, barf, right?

I always pick one person/victim ahead of me that I plan to pass, but never do. So frustrating because for whatever reason I can never seem to turn it on enough to actually pass the person/victim.  I guess it's enough to keep me going and pushing through, I learned to accept it.

I am the lone person you see that never seems to be in a pack of runners.  It's just me myself and I out there in the dead zone between the runner pack and walker pack.

The most bizarre things pop in my head when I'm really in the zone.  "Can I get swimmer's ear from sweat?".

I really love to run.  I did not lose my runners card after all.