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.