Fighting my body

My body is majorly fighting getting back into running.

Its been fighting the running, and largely succeeding, but for the past couple of weeks I've been determined not to let it win and my body, more specifically the MS, is not happy. Last week, I fought and struggled to make it through one mile, which was hard because once upon a time one mile felt like cake. This week, I'm pushing farther and the MS is pushing back. On Monday, I got up to run and my calves were already beginning to cramp up. I'm stretching and I can tell I'm going to be in for a 'fun time' when I hit the pavement.

True to its word, once I started running, my body threw a full fledged MS style hissy fit. Not only did my legs cramp up painfully but my arms as well. Coming up on the one mile mark, my body really started complaining and it wasn't happy at all when I pushed it for another quarter mile before I switched to walking. This morning's run was a little better, despite adamantly not wanting to get out of bed... it was 31˚ outside. It accepted the mile somewhat graciously, it was okay with the extra quarter all though it started its usual complaining right before I reached the end of that stretch, but when I pushed it an extra quarter to make my total a grand mile and a half... the conniption fit started and my legs seized up excruciatingly.

I have to say I'd forgotten just how much of a fit the MS can raise when it doesn't like what I'm doing. The first time I started working out after my diagnosis, the left side of my body went numb for a month. This time it's not neuropathy, which is pretty easy to ignore once you get used to it, but painful muscle cramps and spasms which are less easy to ignore. It is really difficult to work up the motivation to engage in an activity when you know it's going to hurt... a lot.

So while the fatigue has lifted and it is now possible for me to get up at 5 in the morning, it takes a lot of will to drag myself out of bed and into my running gear. I know this will pass if I stay consistent, but it's going to be a long month of miserable runs before my body and the MS starts to accept that I'm the one in charge and I say I'm going to run.

Tysabri Infusion #2

Last week I had my second Tysabri infusion. A lot of people have been asking me if there has been any change or difference since I started treatment, and for the most part there hasn't been... Of course I've only been doing this for two months and from what I've been told it takes anywhere from three to six months for there to be a noticeable difference. However, that being said, I was realizing this week as I once again try to get back into a running routine that the mind numbing fatigue is finally starting to lift.

One of the hardest things trying to get back into running had been the complete inability to drag my sorry butt out of bed in the mornings. The desire was there, but the body and mind was so not willing and in the end won the struggle. It's a small thing, but noticeable this week when the alarm goes off at 5 am and I can actually move. Now it's 5 am, the sun isn't up and it's freezing outside, so I'm not leaping out of bed excited to freeze my tuckass off, but I can get going a lot easier. It's a step in the right direction.

Unfortunately, with the fatigue haze lifting, I'm discovering to my dismay how far back I went in my recovery. I got hit with a three ton load of bricks for a few months and it shows. In many ways it feels like I'm starting over. One small consolation in this is that if I hadn't made so many strides forwards before the relapse hit, when it finally lifted I'd be a lot worse off. It doesn't always help when I'm stumbling my way through the mile I'd conquered two years ago, but hopefully it will motivate me to get back to where I'd been.

Other benefits to the lifting haze, I've discovered that I have a brain! It's a nice brain, I've always been fond of it, I even have pictures of it... but for a really long time it went on vacation or something because it sure wasn't where it was supposed to be. With its return, hopefully well rested with lots of good pictures and stories to tell from its vacation, my ability to write has tagged along. As I prepare for my fifth trek into NaNoWriMo-land, I can actually feel that part of my brain flexing its tiny little muscles and I'm actually able to come up with and maintain a plot.

So, to make a long story short... two months in and there is a tiny little glimmer of hope that a medication is actually going to help.

ASD

So today I met with a group of ladies who all have a child or children on the autism spectrum. It's the first time I'd really connected with other people as a parent of children with autism, working as a behavior coach I always had to maintain a professional distance. Meeting with this group, I never realized how isolating it can feel to be a parent who's kids aren't 'normal'. It's just what we deal with, but it was really nice talking to others who have had some of the same issues from problems with the schools to dealing with shut downs and melt downs. 

I think that the biggest feeling I came away with is that I'm not crazy, especially when it comes to issues with the school. My children have needs that more often than not aren't being addressed, and with my youngest the school is refusing to acknowledge that he's even ASD except that it's plain as day to anyone who knows the spectrum and spends more than twenty minutes with him.

It's both heartening and disheartening to know that my family isn't alone in some of the experiences we've had; heartening because others have gone through it as well but at the same time the road we all face is long and hard and there's no end insight.

Over all it was a great experience, I even met a woman who's child goes to the same school as mine. She's also experiencing some of the same issues with said school. I see now that there is a fountain of information and support that I hadn't been aware of, and maybe this group can help sift through some of that and going forward have better services for my kids.

Some days I question the wisdom of leaving my job. Today really solidified that it was a good decision.

Hitting the road

This morning I went for my first run in many weeks.

As summer came to a close, I was hit hard by fatigue followed closely by a nasty virus that is still lingering.  Dealing with all that brought my workouts and running to a screeching halt, which as in turn brought on a pretty vicious cycle. Feeling like crap has made my motivation to go and workout non-existent, but not working out has brought on more MS symptoms like pain and spasticity which in turn decreases the motivation even more. It's a pretty hard cycle to break.

The run this morning went pretty well. Not spectacular or fast but not terrible either, I was able to go for two miles only having to stop and rest for half a mile. I just have to be mindful of not pushing too hard or too fast or else I risk crashing again. I'm hoping that with the Tysabri on board, I won't get as derailed by MS related issues as I got this summer but it takes time to build up the medication in my system.

In the meantime, I need to sign up for another race. Having a race on the calendar just seems to help focus my training because there is a specific purpose to the work. Registration for the Platte River Half-Marathon 2014 should be opening in November and I'm seriously concidering signing up again. It will be my third time running the race and my fifth half. My average completion time is about three hours, and this time I really want to shave it down to two and a half hours. I also want to be able to run the entire time without having to stop and walk portions, if I can run the entire half-marathon that would be a sign that I am ready to then tackle a full marathon. I just need to remain consistant and dedicated in my training, something has in the past been a struggle.

After my run today, I'm feeling pretty good. More energetic than I've been feeling lately. I wouldn't be surprised if my body throws up a few roadblocks over the next couple of days, the MS likes to do that when I start doing things differently. I just have to push through even when the motivation isn't there and know that if the MS rebels, it's only temporary.

Insanity prevails

Starting today the Health Care Marketplaces opened up across the country, these market places or exchanges were set up as apart of the Affordable Care Act, or Obamacare as it's more commonly known. Starting today, our Federal Government has shut down all because one side has decided to hold our nation hostage because of the ACA. 

I don't profess to know or understand all of the elements associated with the ACA, I'm sure that there are aspects that aren't so good just as I'm sure that all the negative aspects the opponents keep throwing out aren't as bad as they're made to seem. 

What I do know is that before the ACA went into law, someone like me stood to find themselves without medical coverage just because I have MS. It's not profitable for an insurance company to cover someone like me because they would actually have to spend money providing the coverage I would be paying for. The system as it's been, has always been set up so the rich and powerful get richer and more powerful while others suffer. Good or bad, the ACA levels the field a bit, and people like me with chronic illnesses have a chance to get the coverage that pays for the treatment we need.

And agree or disagree, our government shouldn't be shut down because of one side's refusal to accept that the ACA was signed into law.

Ebb and Flow

Traversing through a large series of news articles I came across one from AARP.com talking about the top 10 drug families that mess with memory and cognative abilities. Reading through, every single medication that I was put on to treat my MS symptoms and bipolar disorder were  on that list. It completely explains why my mind took a nose dive shortly after my MS diagnosis, the drugs were killing it. Its frustrating though, that the stuff that was supposed to help had such negative side effects. I despise the thought of having to choose between living pain free and being able to think and function. That issue was a main reason for why I chose not to take anything for a very long time.

That being said, its been about two weeks since my infusion and I have two weeks before my next one and honestly its like I'm not on anything at all. So far, I like being on Tysabri, if the only thing I have to deal with is my own issues and anxiety around having IV's. Unfortunately, I've been battling some nasty cold bug/virus for a while now, so I'm not seeing much in the way of benefits. Being sick has made the fatigue worse, and when I'm not fatigued, the chest congestion makes running or any kind of cardio work out impossible. 

With the increased fatigue over theh past few weeks, coupled by this bug, I've gone the longest without working out than I've gone in years and I'm noticing more MS related issues cropping up again; pain, muscle spasms, more fatigue. I need to get back into working out, but it's a vicious circle once you stop, getting going again. I need to tap into the motivation I had in the begining.

On the bright side, I'm experiencing a small breakthrough in the mental fog I've been battling. I don't know why, but I guess it's all about ebb and flow... I can run and workout like a storm, but can't think to save my life then, I stop working out and my brain starts to turn on. Go figure... NaNoWriMo starts in a month, and I'm primed for a good run at novel writing this year. I've been planning a lot lately, trying to build on the spark that this lift in fog has created. I'm hoping I can build on it and keep the fog at bay, at least until December.

Recovering from the Flooding

Life here in Colorado is slowly returning to normal after last week's massive rain storm and subsequent flooding. The kids in my town are back to school today for the first time since this all went down. While the flood waters are slowly receding, the impact of the massive flooding that split my town in half for a few days is making itself felt. While my neighborhood escaped with no issues, several others near by were devastated.

Yesterday, I helped organize several volunteers from the Boy Scout troop my family belongs to and we went out to one of the neighborhoods that had been hit pretty hard to see if there was anything we could do to help homeowners. Our offer of assistance was readily accepted by one family who were in the process of clearing out their grandparent's flooded basement. The really neat thing was that the grandfather who was 80+ years old, was also an Eagle Scout. 

Our group of over two dozen volunteers, most of them boys, descended upon the house and in two and a half hours had the basement emptied of possessions, damaged and destroyed items on the trash heap, items that survived stored safely in the garage, and damaged drywall and insulation ripped out. The thing that was most amazing about our group were the boys, who were genuinely happy to be there helping out.

Our Boy Scout group is no stranger to community service. We often have several service projects through out the year along with the boys who are working on their Eagle Rank and have to organize and oversee a service project as their final step before earning Eagle. However, I think that there is a difference between spending a couple of hours picking up trash along a creek or pulling out weeds and responding to people in need after a natural disaster like a flood. I think that for may of our boys yesterday, things got really real walking through the neighborhood and seeing people's ruined belongings in piles at the curb, items that included TVs, video games, toys... Things that are important to almost every adolescent and pre-adolescent.

I was really proud of our troop, and glad to be apart of an organization like Boy Scouts of America. It is a tribute to an institution like BSA that a group of boys was willing to give up their last afternoon off before having to go back to school to come down and help neighbors and citizens in need. Not only their willingness to help, but to roll up their sleeves and jump into the grime and muck with smiles on their faces and joy in their hearts. 

The neighborhood the Boy Scouts went to help out in

The culmination of a lot of hard work and clean up by the boys and home owners

Tysabri Infusion #1

Today I am getting my very first Tysabri infusion. Pretty cool right... In reality, not as exciting as it sounds but none the less... here we are. To be quite truthful, I absolutely hate IVs but that being said I'd rather spend an hour with an IV in my arm than endure daily or weekly shots. If that gives any indication how much I detest the conventional MS treatments.

Couple of things I'm learning so far...

Don't bring headphones that require two hands to put on when one hand is going to be connected to tubing.

No, my hand is not going to fall off if I move it a little.

I'm totally kickin' ass with this whole one handed typing thing!

Don't watch scary zombie TV shows on your iPad... They do crazy things to your blood pressure.

I know that the benefits of Tysabri are not going to be immediate, but I can't help but feel like I'm taking a huge step forward in how I'm dealing with MS and I'll take what ever positive outcome I get even if its all in my head.

Creative Affirmations

About five months after my initial MS diagnosis, my symptoms and the MS as a whole took a drastic turn for the worst. Instead of some numbness and tingling in my legs and torso, I started losing feeling in my hands and fingers; I could barely type let alone hold a pencil or do any fine detail work of any kind.

The idea of the MS going into my hands was absolutely terrifying. I've always been able to express myself using my hands, making things from bead work to drawing and lately origami. My hands are my most important asset, and if I lost the ability to use them... I don't know, I think I'd loose my mind.

Lately, that period of time has been on my mind more. I'm not experiencing anything with my hands currently, but I have been worried about the cognitive impact that MS has had on me. Writing has been a struggle lately, like an area of my brain that I used to be able to tap into easily is blocked off or, to use the latest flooding as an analogy, been washed out by the MS and I haven't been able to rebuild.

I've been so proud of the physical accomplishments that I've made, but I'm worried that while I can still walk and run and ride a bike... my mind is slowly rotting away and I don't know how to fight it.

When I first started losing feeling in my hands, I sat down and created a drawing...

My first affirmation, drawn from a photograph
of my son reading a story with his aunt.
©Sabrina Ehlert 2010

 This drawing was my self affirmation that I wasn't going to let MS take my hands.

Pink and Yellow Rose  © Sabrina Ehlert 2012

After that drawing I started working on another that was really delicate and tedious and took me almost two years to finish, but it too was another affirmation to not let the MS win.

 That piece has turned into a series of pieces that  I'm calling, "I Never Promised You A Rose Garden" and I'm hoping I will eventually be able to show through my local artist group.

Orange Rose ©Sabrina Ehlert 2013

All three of the roses have been created using colored Sharpies and consist entirely of dots. Ultimately I'd like to get to five roses all different sizes and colors, and possibly at least one done on canvas with oils.

I'm hoping that working on these pieces, coupled with my upcoming Tysabri treatments will help rebuild some pathways and unblock my writing.

This is a work in progress. I started this a couple of months ago

Floodpocalypse

For those who are interested, the Ehlert family has weathered the floods in Colorado quite well. While large sections of our town and county where severely flooded, us and our immediate family managed to stay safe and dry. The past week was surreal, however, as flood and evacuation notices were being constantly updated. There was a point Thursday night where our neighborhood could have been told to evacuate, the boundary line kept creeping closer.

Fortunately, the wet weather appears to be behind us. Unfortunately, our town along with several other towns has been pretty devastated by flood waters. Many of the roads I like to ride or run on have been washed out or damaged or are still under water. 

http://youtu.be/DCeaed4imPw

The footage is just a glimpse of just how bad the area near my home got hit.

The boys are out of school until Thursday, the district felt that it was best given the devastation and many families need some time to pull themselves together and figure out next steps. It's going to be a long road to recovery. 

It's been an incredible week, but we'll get through it and life will return to normal soon.

Wading through mud

I wonder if finding out that the MS is active and progressing was really a good thing. I mean, before the MRI I was feeling okay over all, but after learning that I have 12 new lesions it seems like I'm feeling the MS more. Sometimes it seems as though I do better if I live my life as though I don't have MS.

But who am I kidding...

For the past year I've been experiencing a systemwide slow down. There hasn't been any one incident that screams 'the MS is back!' but if I look back over the course of several weeks and months it's actually pretty obvious. And while I didn't want to openly acknowledge that the MS was returning, I knew, why else would I suddenly want to find a new doctor and be willing to test to see if I could go on new medication? On some level, I just knew...

Does knowing that I'm relapsing make everything harder? Yes, but I think I'd rather know because when I struggle to get out of bed and find the motivation to work out it's less discouraging. Not because it's an excuse to not workout, but rather motivation to push through while simultaneously giving myself permission to be slow or ease up. Getting up and doing anything is better than not getting up at all, and from the beginning I knew this day was coming.

Now is the time to put into practice some of the lessons I've learned about MS. I can't get complacent about the fight because for a while it was easy. I have to remember that all the work I've done up until this point has probably saved a lot of mobility and muscular issues, but I can't give up just because the fatigue is so mind numbing right now and basic everyday living feels like I'm wading through mud.

Now is the time to fight harder, to renew my vow that I am not going to cede anything to this condition, at least not without a fight.

Progress... I mean progression

Yesterday I went back to my doctor for the results of all the various tests they did on me last month to determine if I could go on Tysabri. Long story short, I have not been exposed to the virus, and I am a good candidate for Tysabri. The news wasn't all good however... The new MRI I had done at the begining of the month shows twelve more lesions including one that was 'lit up', or active at the time of the MRI. This means that over the past three years since my last MRI, the MS has been steadily progressing. 

The doctor says that twelve lesions in three years isn't too shocking or horrific, especially considering I've not been on disease modifying medication for most of the time, but it is way past time that I get on something. I was surprised that I had so many new lessions since over the past three years I've been relatively symptom free. The doctor wasn't too sure, MS affects everyone differently, but if she had to guess all the exercise and activity that I've been doing has helped my brain. She was saying that exercise is one of the only ways to heal and remylate the brain. I take that to mean... if I hadn't been doing everything I've been doing, things could be a lot worse. Going on Tysabri will hopefully mean that I won't loose anymore mylan and if I keep up with the activity I could hopefully make improvements.

While at my doctor's office, I agreed to take part in another study. Since I haven't been on any medication in over two years, there were some people really excited to get a hold of some of my blood so they can do studies with it. Once again, there isn't anything I actively have to do for the study except bleed, but maybe my contribution will aid in further understanding of MS. There is a study going on, however, that I am very interested to get into. Apparently its a study involving exercise, nutrition and MS, which sounds like it might align with what I've been doing for the past three years. I don't have any specific details as of yet, but I'm hoping to talk to someone involved with the study soon and see what I can do to participate.

It's going to take a few weeks to get the paperwork for the Tysabri all worked out, hopefully I should be getting on it soon. In the meantime, I'm just going to keep going with what I've been doing. When my doctor was telling me that the exercise has probably been the reason why I've felt so good despite the fact that my MS is progressing I said to her... "So I should keep exercising." to which she replied, "Hell yeah!" I've always known that my workouts and training make me feel better and good, I just wasn't aware of just how much they were helping me as the MS was worstening in my brain. Let me tell you, to learn that I had all those new lesions plus one that was active and I was experiencing little to no symptoms, my motivation to keep working out, keep training, is renewed ten-fold.

As my husband pointed out yesterday when I told him... "Wow, running really has saved your life."

The Gifts Life Gives

Lately, I've been thinking a lot about all the gifts I've been given over the past few years and I'm not talking about the material things I've received, but gifts that have had a lasting impact on my life. Not all of the gifts have been good, at least not on the surface; getting MS, having to quit a job I loved because the new boss was driving me nuts and the work was draining me dry... But hidden in the negatives were some of the most important gifts.

Finding out that I had MS was probably the biggest gift the universe could have given me. It taught me not to take so much for granted, that my energy was better spent on things that mattered rather than going through the motions of a life. Without MS, I wouldn't have left the job I'd secretly hated. I wouldn't have discovered the school I worked at, or met some of the most amazing people who helped me realize that the only limitations in life are the ones you set yourself.

Yesterday I learned that Crazy Boss is no longer with the program, and part of me started thinking that maybe I'd want to go back. However, the other reasons I had for leaving... high stress, little energy at the end of the day for myself let alone my family... still applied. And thinking further, I've moved on to a different stage in my life, my time at that school really is finished.

So where do I go from here?

A very good friend of mine believes that I am a powerful manifester. When I want something bad enough, I can focus my energies until I achieve what I'm after. 

I want to be a writer... okay so technically since I'm sitting here writing right now I am a writer, but I want to be a published writer. I want my words to be read by and impact others. I want to contribute something to the world that will be around after I am gone. I want to be able to travel the world and experience what it has to offer then use those experiences in my writing. 

One of the things I wanted to do when I quit my job is to focus more on my writing. Unfortunately saying I want to focus on my writing and the reality of being a full time writer are two entirely different entities and I'm wondering what the universe has out there waiting for me. I want to be a writer, and I believe I can manifest myself as a writer, but its the journey thats going to be the most important part of that process and not so much the final destination.

I am ready for the next gift that life has waiting for me, good or bad. I know that what ever it is, it will take me to where I need to be. In the meantime, it's important to see where I've come from and the things I've experienced as the gifts they turned out to be.  

Changing mindsets: Walking is not weakness

This morning I woke up feeling tired and fatigued dispite having gone to bed at a reasonable time and sleeping through the night. I was so tempted to blow off my cardio for today, but in the end I decided to walk for 30 minutes instead of running as I had originally planned.

I don't know why, but it is so hard for me to walk. Its not a physical limitation but a mental one, because after three years of getting myself inshape I can't help but see walking as a sign of weakness, like I'm not good enough. It's stupid, and rationally, intellectually, I know that walking is just as good as running but it doesn't stop me from going into this internal dialogue that keeps telling me that I should be running and I'm just a whimp.

I could have run this morning, and it would have been a miserable experience and it probably would make my workout tomorrow even harder. Walking meant that I still got my workout in, but I finished feeling good instead of miserable. Walking isn't weakness.  When I was working with our Boy Scout troop this spring getting ready for BolderBoulder, I would always tell them that even if they just walked during our training run, they were still spending 30 to 40 minutes outside doing something active. That was time not being spent sitting around watching TV or playing video games, they were doing something more than your average teen and preteen, especially early on a Saturday morning.

So, why is it I can't take my own advice? Why do I see taking it easy yet still working out as a sign of weakness? I could have done nothing and spent 30 minutes watching TV or writing or just gone back to bed after the kids left for school. 

During the half marathon, I walked quite a bit, I had to... I didn't train well. But each and everytime I walked, I had to rationalize it to myself to make it okay like I was doing something wrong. Somehow I need to change my thinking around taking it slow, just because I'm slower doesn't mean I'm not working hard, and the only way I'm going to get any better is if I stop mentally beating myself up when I fall short of my expectations.

Walking is not weakness, at least I did something instead of giving up and going back to bed.

Dublin Rock 'n Roll Half-Marathon

Its been a couple of weeks, but I'm finally posting an update on the Dublin Half-Marathon.

The race went rather well, especially for someone who didn't really train like they should have for a distance run. I never expected to finish really fast or qualify for any kind of recognition or reward, really it was an excuse to go to Ireland.

It took me a little over 3 hours to complete the course, and maybe it was the lower elevation, cooler climate, cloudy weather, I don't know but I did not have the leg and foot issues I'd been battling every every other run. So that alone made the race very pleasant and getting to sightsee around Dublin as I ran was just a bonus. The course took us through Phoenix Park, which is over 3x's the size of Central Park, and I have to say that after getting past the monster hill at the entrance, it was my favorite part of the course. It was so pretty. There were lots of people who were stopping to snap photographs but I did not... alas. Too busy maintaining momentum.

One thing I do have to say is that I'm kind of tired of just finishing races. I've been there, done that, I think I've more than proven that I can run, or cycle, or swim, or do all three in one event. I used to not care if I was the last person to cross the finish line, but I'm kind of tired of having all the good stuff already gone at the aid stations or they're starting to tear down. I want to be better, maybe not the fastest but at least solidly in the middle.

Anyway... Dublin was awesome! After the race, we went to a pub near our hotel for a pint. There is something to be said about Guinness, it's a great post race recovery beverage. When you're in Ireland, it's a pretty good pre race beverage too, perhaps thats why I had fewer muscle issues. 

In addition to the race, we did a lot of sightseeing, though walking around Dublin post race was a little trickier. We went to my favorite place in the while wide world, The Guinness Store House. If this whole writing thing doesn't pan out, I can get a job a serving Guinness as I learned just how to pour the perfect pint.

I don't have any other events on the horizon and I'm thinking I'm going to keep it that way, at least for the rest of this year. I think I've done too many different things that I haven't really improved at all on any one. 

I burned out this year. Two years working my tail off training plus a really stressful job has totally knocked me on my ass. Now it feels like I'm back at square one almost. I think that toning down the events and getting back to some basics, exercising regularly for instance, is going to be beneficial in the long run.

Last Half of my season.

This weekend I'm flying to Dublin Ireland for the Dublin Rock 'n Roll Half-Marathon. I'm really excited to be heading to Dublin. I will confess that my training hasn't been all that great or consistant, getting leg cramps every time I run hasn't been conducive to maintaining motivation but I'm still going to give it my all.

This event is the last event I've signed up for this year. I'm tempted to sign up for at least one more triathlon, but not having any income at the moment, I can't justify the expense. Maybe a break from events will be a good thing, I can focus on just trying to get back into some better shape. 

I still want to do Ironman. I'm hoping that getting in contact with the Rocky Mountain MS Center I can maybe work with people who could help me achieve that goal. I would like to generate some interest and support around my book maybe find some way to subsidize my training.

Full time writing, not as easy as one thinks

So this whole quitting my job to be a writer is a lot harder than I expected. One would think that having all sorts of free time to write would be conducive to you know, writing. 

It turns out that its not so easy. I can't count all the times I've sat in front of a blinking cursor waiting for inspiration to strike only to be mocked by a blank screen. And the novel I was hoping to crank out this month... Yeah well, that's a whole other issue.

On Friday I leave for Ireland to run in the Dublin Rock 'n Roll Half Marathon. I'm hoping that the travel will help inspire me. Maybe I can pen a short story or essay or something, or maybe a review or two of some of the places we go, either way I'm hoping to find some direction or focus because right now I'm feeling pretty directionless.

Mountain Bike Weekend

This weekend I went up to Wyoming with Jeremy and the boys and our Boy Scout troop for a mountain bike weekend up at Curt Gowdy State Park. It was a good time over all, we had a little excitement on the way when the straps on our bike rack failed and Jeremy's bike fell off while we were driving down the freeway. Luckily, no one was hurt and the bike survived with only a few scratches and scrapes to the frame. 

Ironically, in the time leading up to the trip, the boys weren't all that excited to go mountain biking, but when the time came to hit the trails I was the one who was hesitant and struggled with wanting to get out there on my bike. Ever since the Xterra Lorry Tri last year when I crashed my mountain bike and broke some ribs, I've not been all that comfortable riding the trails. I probably should have gotten right back on the proverbial horse right after my accident, but broken ribs kinda hindered getting on any kind of bike let alone a mountain bike.

I got out on the trails, but I never really felt comfortable and I can't say that I enjoyed the riding part of the weekend as much as I would have in the past. Lately, I feel like my center of gravity is unstable and I don't even ride my road bike as much as I used to. I'm hoping that if I go on Tysabri at the end of August then maybe some of that will be resolved and I can get back to doing some more of the things I enjoy.

Medication (part 2)

So my appointment with the Rocky Mountain MS Center at University Hospital in Denver was... Interesting. First off, I've never been to see someone who actually specializes in MS, I've only ever seen regular neurologists who are knowledgable about MS but see and treat a wide variety of other neurological conditions.

There is a big difference seeing someone who really knows MS. One big one being the information they have especially when it comes to medication. For over two years I've been out spoken against my taking the disease modifying medications. I've hated how intrusive into my life they can be, the side effects, and the psychological impact of having to deal with a daily reminder that I am sick. Plus the fact that I could just as easily relapse on meds as without, so why make myself feel miserable if the MS is still going to get worse?

I've shared my issues with other doctors but none of them listened, they either pushed different meds on me or just ignored me entirely. No one cared about my perspective. 

It turns out that the standard of care recommended by most neurologists for MS is backwards. They recommend courses of treatment that are the least effective and it isn't until all else failed and the disease has progressed that they actually start trying treatments that do something but at that point there's been significant progression and damage. 

The doctor I saw yesterday wants to treat me as aggressively as possible with a medication that has a strong track record or actually doing something, including helping with current symptoms. The only thing is, I have to spend 3 hours in a clinic every 28 days getting an infusion of the med and aside from the possibility of an infusion reaction I would not have other side effects. Well, that and there is a chance of developing an infection, but the risk factor is pretty low.

I'm seriously considering going on this medication. If the low to no side effect claim holds true, there is no reason not to even with the risk of secondary infection.  There is a lot I have to do before starting... They took a ton of blood yesterday and ran all kinds of tests, I'll need an MRI. I go back in a month, and if all goes well I may go on a new med. 

Medications - to take or not to take, that is the question

Tomorrow I have an evaluation at the Rocky Mountain MS Center. I had one set up earlier this month to see if I could go on Tysabri, a MS medication, but the appointment fell through and even though it was rescheduled, I'm kind of on the fence about seeing another MS doctor.

I've not had good experiences with doctors related to MS. My first neurologist made me feel small and insignificant, and all but called me stupid when I told her I didn't want to take the disease modifiers anymore. The second doctor I went to, on the recommendation of someone close to me, completely lost interest when I again explained that I didn't want to take the shots anymore. It seems to me that unless I'm willing to take the drugs, doctors have no interest in working with me.

I get it, there is all sorts of data and research that supports taking medication to slow the progression of the disease, but no one seems to care that, for me, taking the medication made me feel worse while changing my diet and exercise habits made me feel better and all but eliminated most of the MS related symptoms.

I don't get why there isn't a lot of research into the effects of diet and exercise. The doctors I've seen said, that diet and exercise can help improve mobility and over all health, but there seems to be nothing about diet and exercise when it comes to progression. All I've heard from doctors is that the only way to slow the progression is to take the meds.

Excuse me for sounding cynical, but pharmacology is a very big and lucrative business, I don't know if I trust a recommendation where the only true guarantee is that if I take it, I contribute towards making a lot of other people very rich.

I would love to find a doctor who would be willing to actually work with me, who would monitor my condition for potential progression, and who actually listens to what I have to say. I just don't know if I'm going to find that tomorrow.

Has it really only been 4 years?

Four years ago this past July I started experiencing my first round of MS symptoms. After a month of testing and waiting and even more testing, my results came back with a pretty conclusive MS diagnosis.

Four years... Honestly not very much time, but it feels like its been so much longer. Looking back at who I was prior to being diagnosed and comparing her to the person I am now, it just seems like more time should have passed. I honestly can't remember a time when I didn't have MS.

Amazingly, I'm not sorry that I have MS. It has forced me to really evaluate myself, my life, my priorities... I wouldn't be where I am today if it wasn't for MS. Sure things aren't always as easy as they once were, there are a lot more things I have to be careful of; not over heating, not over exerting myself. But there a a lot of things I can do now that I hadn't been able to do before; run a mile, run 5k, participate in a triathlon, run a half marathon... The list could go on for quite a while.

One of the best things having MS has taught me is to not just sit back and accept limitations other people put on me or more importantly the ones I set myself. I don't know what my future holds. I could wake up one morning with a nasty relapse and can't get out of bed, or maybe that never happens. But one thing I've learned is to do as much as I can now, while I'm able, push myself forward, make strides so that when my mobility does start to deteriorate it will take longer because there will be a lot of mobility to go through. 

One thing is for certain, I'm not going down without a fight and for me every race, every run, every bike ride is just one more battle in my own personal war against this disease.

If I could go back four years and tell myself one thing, I think it would be not to take anything for granted, because you never know when the things you used to do easily become almost impossible to accomplish. And most importantly...

Don't tell me what I can't do.

First Tri of the season

Today was the 2013 Boulder Sunrise Sprint Distance Triathlon. Two year ago, I did my first triathlon ever at the 2011 Boulder Sunset Sprint Distance Tri and today I remembered why I got into triathlon and how much I love this sport. Todays race was AWESOME!!

Now I should preface that leading up to this event, my training was sorely lacking. I just wasn't motivated to get out on the bike as much as I should have not to mention I had the brilliant idea to switch out my regular pedals for ones with clips and shoes that clip in... a week before the race. Plus, last night I went to a party to celebrate a good friend's awesome new job and enjoyed pizza and margaritas, the corner stone of any good pre-race meal. Suffice it to say, I wasn't feeling overly confident heading into today's event.

The most consistent part of my training was the swim and ironically, it was the hardest part for me today. However, it wasn't lack of skill or ability that got me but that the water was so fricken cold that right off the bat my calf muscles threatened to seize up on me. I managed to do reasonably well, despite the cold until about 200 meters from shore, when another swimmer accidentally came up on me causing me to tense suddenly. My left calf instantly stopped working and I couldn't move my leg at all. Initially I was worried that I was finished and would need to be pulled out of the water, but I flipped onto my back and did an easy back stroke while kicking with my one good leg until I felt reasonably certain that I wasn't going to drown and could start to work my left leg again. The leg cramp incident screwed up my swim time, but I finished and made my way to the bike which was the area I trained on the least.

As I mentioned before, I'd switched out the peddles on my bike a week prior to the event. Everyone and his brother who cycles had told me for years that I really needed to get clip peddles with shoes and cleats if I wanted to get the most out of my road bike. I'd been resistant to clips because the idea of being clipped into my bike was unnerving... what was I going to do if I to make some sort of quick evasive maneuver? Finally, after some research and asking questions, I settled on the types of bike peddles that would work for me and then took advantage of REI's great Memorial Day sale to pick them up.

Now up to this point, I'd had all the accoutrement that goes along with cycling with the exception of the pedals and shoes and let me tell you... I still managed to feel like some kind of cycling poser, wannabe, when ever I encountered other cyclists on the road or at events. So, having real cycling pedals finally, I wanted to put them on my bike and truly fit in with the crowd. (Seriously, its like high school all over again and like high school my insecurity was all in my head) Of course, in my adolescent desire to 'fit in' I broke a major rule of racing which is... don't switch out your gear right before a race. 

Needless to say, the bike portion of the race had the potential to really suck, however what little training I did with my new pedals coupled with my familiarity of the course help make the ride a whole lot of fun, and at that point I started really enjoying myself. About halfway through the bike part I came across another participant on the side of the road and ask if she was okay to which she replied 'No'. So, even though it was going to mess with my timing, I stopped to see if there was anything I could do to help her. (Apparently a couple of spokes on her back wheel broke) She was amazed that I actually stopped, she said she'd been there for a while and everyone else just flew past. There wasn't much I could do to help, and right as I was getting back on my bike to head out a SAG vehicle came to assist. Even though there wasn't anything I could do, the girl was grateful that I stopped.

Traditionally, the run portion of a Tri is the one I both dread and struggle with the most. I am just not a good runner no matter how much I run. Today how ever was a slightly differ story. I was still slow, I had to walk portions, but the temperature was delightfully cool and the sky full of clouds, and the run just didn't suck.

All in all, despite not training well, the leg cramps, and stopping to aid the cyclist, this was still my best triathlon. I completed the race in 2 hours 35 minutes, a personal record. I have a long road ahead of me to get to Ironman, but so long as I get focused on training, it's a rewarding one.

Just don't want to be the slowest person anymore

So yesterday, Jeremy and I took a small group of Boy Scouts out on what has become our weekly training run in preparation for BolderBoulder. Calvin is an excellent runner, but Hobbes is not and often struggles quite a bit. However, for whatever reason, no one wanted to run yesterday and my biggest thing was to get all the boys to at least take the 5 miles at a fast walk if they weren't going to run.

With the pressure off, Hobbes was surprisingly quick. Instead of lagging behind the whole group, he was trying his best to keep up. He told me that his personal goal for the day was to not be the last person for a change. I can totally relate. It seems as though no matter how hard I try, or how much I train, everyone else always seems to be faster than me, better than me. Sometimes it can be hard to want to put myself out there and try.

This afternoon, I went out for a bike ride, my first real ride of the season. I have a triathlon in June, and I have been woefully lax on my training. I was sure that my ride today was going to be hard and slow and just suck in general, however I found myself going well, taking the hills comfortably, and for the first time ever not the slowest person on two wheels. It felt good to feel strong in spite of not having ridden these past few weeks/months.

On our run yesterday, Hobbes fulfilled his personal goal and was not the last person to the park. He wasn't the fastest, but he wasn't the slowest and for him that was all that mattered. At least he was out there trying... all the boys were. We spent an hour an forty five minutes going five miles, and in the end that is an hour and forty five minutes the boys were not spending indoors, laying on the sofa watching TV or playing video games. 

Sometimes it's hard to try, but being out there doing your best is better than not trying at all.

Long Way to the Finish

Today was the Platte River Half-Marathon.

One thing about  doing all this with MS is how limiting MS can feel. It's frustrating, I can't train well in the hight of summer but at the same time I can't train well in the middle of winter... too much heat or too much cold equals badness, it feels like I just can't win.

Today, the run started pretty much like all of my other runs recently... spasticity in my calves. I tried taking Advil before starting with the hopes of staving off the worst of the pain, maybe it took the edge off maybe not. For the first two or three miles or so, I had the spasticity then by mile four my right foot went completely numb, followed by my left foot. The next four miles felt like I was running in ski boots of what I imagine what running in ski boots would feel like.

One thing I've learned about dealing with MS related issues is that if you push through long enough, they eventually dissipate which happened on this run by mile 10. Unfortunately, the blister forming on the bottom of my left foot at mile 11 made me almost wish I was dealing with the numbness.

In the end, I finished strong and I felt good crossing the finish line. There is still a lot of work I need to do on my running. No matter how much I run, or how hard I try... running is still not my thing. Doing the event today got me itching to sign up for a triathlon this summer, I'm thinking the Boulder Sunrise or Sunset... or maybe the Summer Open or Oktoberfest.

The next race on my agenda is the BolderBoulder on Memorial Day which I'm doing with Jeremy, the boys, and a group of Boy Scouts I've been working with on their Personal Fitness merit badges. After 13.1 miles today, 6 should be a breeze.

Spasticity City

Lately it feels like my body is falling apart.

I’ve been having more issues in the past few weeks than I’ve had in a very long time. The tingling and numbness was just the start, now every time I go running my calves lock up from spasticity. It is one of the most annoying and frustrating things to have happen when I try to run, not to mention painful.

I don’t know why the MS is flaring up more lately. Since the one thing I’m not getting is weaker, my doctor doesn’t feel like I’m relapsing or at the very least he’s not worried... too much. I am going to be seeing the Neuroscience Specialists at University Hospital in Denver to look into going on a new MS treatment. It would be my first treatment for MS in a couple of years, but if I can go on it I wouldn’t have to deal with daily or weekly injections. It would mean getting my MS meds with out it really impacting or interfering with my life too much. 

It’s a pretty nasty catch 22... In order to help keep the disease from progressing I need the meds, but the meds make me feel as bad if not worse than the symptoms of the disease not to mention they would impact my ability to train and work out which is also, my doctor agreed, another very important part to living and managing with MS. Tysabri, the new med I’m looking to go on, is an IV infusion that I would have to get every couple of months or so. There are side effects and drawbacks to the new med, and when I talk with the University I’ll find out more about them.

I’ve got the Platte River Half-Marathon coming up on Sunday, and I’m hoping that the spasticity in my legs will be at least manageable or else it’s going to be a pretty miserable run. I've been trying to keep hydrated, my potassium intake up, stretching and every other thing I can think of to try and combat the issue with my muscles. 

Here's hoping it works on Sunday...

Been a long couple of months

The past couple of months have, admittedly, been kind of difficult MS wise. Since February I've had a whole mess of things flaring up again; fatigue, dizziness, numbness... I'm so sick of it. Of course, the resurgence of issues has put a damper on my training and I've got a half-marathon coming up in a couple of weeks. It most likely won't be my best event ever, but I'm still going to go and do my best. It doesn't matter when I cross the finish line just that I cross. I've been working with a group of Boy Scouts on their Personal Fitness merit badge, and one thing I keep telling them is that personal fitness isn't about competing with other people, there is always going to be someone bigger, stronger and faster, the person they need to compete with is themselves and try and do their personal best. That's definitely something for me to keep in mind as well.

Next month I'm going back to my neurologist to touch base on the resurgence of issues I've been having. I don't want to go so far as to say I'm relapsing, though it certainly feels like I am, but I do want to see what my doctor has to say. It could be that I've been running myself down with stress from work plus training which instead of helping my immune system, it's actually lowering it making me susceptible to every little bug that I come across. My hope is that when the school year ends, I will be able to bounce back and get back to feeling more like myself.

Changes in the wind

This summer will be my four year anniversary of being diagnosed with MS. I'm also going into my second year being in remission and mostly symptom free (I still get a touch of numbness and fatigue when I over train). My life with MS has taken a massive turn from where it had been heading before my diagnosis. There is no arguing that I'm in a much better place now then I had been four years ago and I'm feeling called to do more and take a huge step embracing my MS.

I've come so far in a short amount of time since my diagnosis, and a huge part of that has been my attitude towards MS and my commitment to my overall health and fitness. Combine all that with being a writer, and to sum it all up, I'm feeling called to tell my story and share what I've learned and how I've managed to overcome some of the worst parts of having MS. In addition, I want to take my fitness even farther and push myself to levels a lot of people wouldn't think about going, especially with a chronic illness. To that end, it's my intention to register and train for Ironman in 2014.

Talking with a good friend of mine who's done Ironman, I have my sights set on either Ironman Arizona or Florida in November 2014. According to my friend, they are two of the best first Ironman triathlons out there. The rub is that they're both really popular, and tend to sell out quickly not to mention the cost of doing Ironman in general is pretty expensive. I can't try to sign up until November this year, and cross my fingers that I can get a spot, but that's not going to stop me from training with that goal and date in mind; if 2014 doesn't work out there's always 2015.

Now some people might wonder... Why Ironman? Do you hate yourself that much?

A big part of why doing Ironman is really important to me is to prove to myself that I can, that with training and eventually coaching, I can push my body to its limits and beyond, that MS wont stop me from achieving my dreams. I know that one day, hopefully a long way down the road, my body won't be able to handle the rigors of training, that the MS will have progressed to a point where my physical mobility will be impacted, but until that happens I want to do everything I can while I can. I want to face the eventual relapse without regrets, that I did everything I could do to keep my body strong and I want to have the memories of the things I did accomplish to remind myself when things get hard that I didn't give in.

So the plan in a nut shell...

Start training for Ironman Florida/Arizona 2014
Locate a trainer/coach who will kick my butt up to the next level
Research as much as I can about nutrition, running, cycling, and fitness in general
Find other people with MS who exercise/train and talk about what they do
Write about everything
Generate interest in my book and try to find ways to offset the cost of training

Finally.... kick ass in 2014 and cross the finish line!

I haven't yet put together my training program for Ironman. The first thing I feel I should do is see my neurologist and get him on board, do the whole check up, new images, talk meds... All things I've kind of avoided. After that, find a coach, ideally someone who is familiar with MS and working with athletes who have MS. Until then, I have two half marathons in April, The Platte River Half and the Horsetooth Half, BolderBoulder in May and Bike MS in June. I'm also thinking of adding a sprint distance tri or two to the schedule. One thing I learned the hard way with my schedule last year is that its really easy for me to over train and that way lays all sorts of badness. So, I have to figure out the best way to train without over training.

There are definitely changes happening this year, changes is my focus, my goals, where I see myself and most importantly changes in my calling. Instead of living with MS or just in spite of MS, I feel called to use my experiences with MS to try and reach out to others.