I have Multiple Sclerosis!

I have told pretty much all of you 1:1 by now, so I can post about it here. I have Multiple Sclerosis (M.S.)! It isn’t scary, so I don’t mind being a bit light hearted about it! Being diagnosed now versus being diagnosed 20... even 10 years ago is a totally different thing, so, we don’t have much to fear, my friends.

The Short Version!

If you are a totally lame person and only want the short point of this entry, scroll down to where you see the next M.S. Awareness ribbon:

For regular, nice people, continue reading here:

What actually is it?

Multiple sclerosis is... ready?... Multiple (more than one) sclerosis (scar tissue) on your brain or spinal cord.  The disease is an auto-immune disease, meaning that your body... your immune system (the central command for battling illnesses and viruses), is on auto-pilot ALL THE TIME, so it sometimes ends up attacking itself.  

So, the M.S. disease is basically a squirrel.

Think of your brain as the motherboard of a computer, and all of your nerves as the long wiring that goes everywhere and transmits the signals that makes your body move and breath and pump blood and drive and play video games.   And, wires, as you may know, have a nice, cushy covering, just like your phone cord does.  

Your phone cord is not just metal, otherwise we'd all get shocked and catch on fire all the time.  The coating protects the cord.  Your nerves work the same way, except the coating is called myelin sheath (covering).  

So, this squirrel, aka the disease, comes in, and starts chewing on the dang wiring.  This interrupts the signals sent to that part of the body.  Things do not go well.  That part of the body loses communication with the motherboard.

Sometimes, after the attack, the body can repair that myelin and signals are returned, and sometimes, not so much.  Unless you are on treatment, this squirrel is running around rampant and can attack any time.  
Maybe he goes for your nerves or your vision, or maybe he lays dormant for years.
Maybe your body can recover, maybe it can't.  
That's why the medicine is so important... it stops the squirrel, it just stops it!

We’ve only really started understanding how to deal with this disease over the past 20 years or so. The medications that have been released in the past 10-20 years have made it so that being diagnosed with M.S. these days is really not a big deal. The medications that are available have the ability to basically halt the disease/squirrel in its tracks. It’s amazing, really.  There's no cure, but at least we can hope to halt progress.

It is so frustrating to hear people give out fake news and alternative facts about this stuff. It is so important to take an interest in your own health, and when you have any sort of ailment, it is so important to make sure to never stop educating yourself. I know of quite a few people who have M.S., and for all sorts of reasons, they are not on any treatment. It’s a huge gamble… but also, I can’t judge, because everyone is different, and everyone deals differently with how they think is best to manage their soul vessels.

My personal story:

About 5 years ago around Thanksgiving, my right foot started getting really tingly, like the pins and needles you feel when you’ve been sitting too long and your foot or arm or whatever goes numb. Except it didn’t go away. Eventually, it crawled up my entire right leg, and it got to the point that I literally couldn’t feel that right side of my body, from about belly button down my right leg. I knew I wasn’t having a stroke, and I felt otherwise fine, so I really didn’t freak out about it, because I didn’t have time for such an inconvenience. I had just started a new job and didn’t want to be that guy who takes off work right away, and I was traveling to visit my aunt in Florida for the holiday.

Miraculously, I was still able to drive and walk just fine, I just couldn’t feel anything on my right side. You literally could have shot me in my leg and I would not have known. I had to wear shoes that strapped to my feet, because I wore flats one day, and looked down to realize that I had been walking on my now-sideways facing shoe. That’s a quick way to break an ankle, and I wouldn’t have known it… but thankfully it was winter boot season, so I just wore boots for about 6 months.

Eventually, the tingling and numbness started moving to my other foot, and that’s when I knew I was in trouble. Thankfully, I had a very good friend at the time who asked me when we were going to celebrate her birthday with a happy hour (December 1), and I told her that I didn’t know how far I could walk, and explained the situation. She, being a paralegal and all-around badass, screamed at me on the phone that “YOU SHOULD BE IN A MACHINE RIGHT NOW… NO… HANG UP THIS PHONE AND LEAVE WORK AND GET IN A MACHINE…” and she basically kept screaming and terrifying me until she met me at the hospital very soon afterwards. I’ll always be grateful for her snapping me out of myself.

Another symptom I had going on was a TERRIBLE misfiring nerve in my chest, almost by my armpit. It’s kind of hard to explain, but basically, it felt as though someone had shot a smoldering arrow clear through that joint area of my arm, in the front and clear out the back. It was extremely itchy, to say the very least, and in fact sitting there in bed rolling around in discomfort that morning that I went into the hospital, after already haven gotten ready for work, it was the actual last straw. It was torture, and I was terribly bruising myself by trying to find relief.

Lots of testing later, we didn’t know much, just that it was possible that I could have M.S., and that I had transverse myelitis, which is inflammation of the spinal cord. My spine for some reason started viewing my legs as a virus or something foreign, and so it had been cutting them off. The body is amazing, that it can do that. 

So, it took many months and lots of rounds of steroids, but I eventually could feel my legs again. The misfiring nerve got a lot better, too, but I do still struggle with the discomfort of it on an almost daily basis.

M.S. is really hard to diagnose, because no two cases are alike. You need to have a combination of at least two things to diagnose someone…. Either two “events” (which is what I went through,) or progress on an MRI (meaning that new lesions, or scars, are visible on your brain or spinal cord.)

I never had the combination, so they could not diagnose me. Meanwhile, I went to multiple different doctors at Johns Hopkins and University of MD to get more opinions. No one could diagnose me for years, and that was fine by me. I didn’t want to start treatment anyway… first of all, it’s a major commitment not to be taken lightly, and secondly, it’s about $45,000/year. Who was going to pay for that if I lost my job? Obama? Oprah? Trump? (LOL nah, it’s pre-existing condition…)

Annual or semi-annual 3-4 hours long MRIs! I don't mind them.

Finally, my main neurologist, who is amazing, said to me, “Look, you’re putting yourself at risk every day you are not on treatment.” He told me that they can get conclusive data by testing my spinal fluid, so that’s what we did. This led to a spinal fluid leak, which was misery for about 2 weeks… but I digress…

So, I started treatment after that. That was almost exactly 2 years ago.

Picking a treatment is almost literally like choosing your poison. Each has its terrible side effects, none of them are without risk. I’ve been on the same one since I was diagnosed, and it’s been rough.   The good news is that Smidgen has been extremely aiding, and always seems to know when I feel like death.  

((( engage extreme cat healing )))

I get flu-like symptoms every other week, and spend the better part of every other weekend ill. Over time, I’ve grown accustomed to it, and my doctor says that I’m part of the 15-20% of patients who don’t seem to totally acclimate to the side effects. There’s not really a solution. I’m basically allergic to my medicine, which, btw, is a shot that I give to myself, and my injection site swells up and bruises for about 10 weeks. It gives me a really cool cheetah pattern. Check it out.

Dangit, I thought I had more pictures of the cheetah print, but it turns out that I do not.

The worst part

Probably the worst part about going on treatment was that I couldn’t figure out how to do archery anymore. The treatment (especially in the first year) gives me hot flashes like crazy. I already had a pretty severe aversion to heat and sun (WHICH, btw, is common for M.S. patients and kind of a symptom,) and the treatment made it so much worse. In the hot Maryland summer, I couldn’t figure out what to do. I remember one day I was at a shoot at my club, and I simply couldn’t go on anymore – I had to walk off and go home.

I was thrilled that Nationals were going to be in Washington State that year, because Washington State is my favorite place! It is cloudy and cool! Finally! It would only get to be like 70 degrees at the worst! I would shoot and it would be amazing!!

Except, it was the hottest summer they’ve had on record with temperatures hovering around 100 each day. Of course. 

It was a heatwave the entire week we were there, and I got sick and couldn’t shoot well. I had a really really great trip over all, and got to meet up with lots of friends, but the archery was a loss.

I didn’t touch my bow again for months.

So, I am going to amp myself up and try to see what I can do, again. I don’t know how I will manage. But I would hate to give up so soon.

Why are you only now telling me?

Well, I wanted to see what I could do on my own. I told my small circle of trust, and put everyone, including my mom & Mario, on strict lock down from discussing it. I have my reasons. Mostly, because I didn’t want people to know half the story. There is such a stigma with M.S.. People hear “M.S.” and they immediately think… wheelchair… or some other awful fate. 

 The truth is, it simply isn’t like that anymore with the treatments that are available, and I never feel comfortable telling people that I have M.S. without being able to make eye contact and tell them the full story.

It’s important to me to be able to open up the conversation. They say it’s a “rare” disease… but I’d say about 4% of the people I know have it. (That’s a lot, actually.) And that’s only the people I know about.

There could be other people who, like me, aren’t public with it, or haven't been officially diagnosed yet. I know that before I was diagnosed, the one person I knew had it at the time wouldn’t talk to me about it. I felt resource-less. I don’t want anyone to feel like that.

Why this is important

Just as importantly, I have seen the benefit in sharing. I have a friend from my last job who is a C-level employee, and will be for the rest of his life… he’ll always be running some company somewhere. He happened to get scooped up in the news, because we caught up not long after I started my new job, and he has a medical background, so I shared with him. We catch up every 4-6 months.

About a year ago, we caught up again, and he shared with me the most heartwarming story. He told me that even though he had no previous experience with M.S., by knowing me, and hearing my story, and seeing how the whole thing developed and my journey to treatment, he has been able to support his own employees. He had an employee who recently opted to go through the most rigorous M.S. treatment (which is basically a chemo and was just approved by the FDA last November), and he said that by my sharing my journey with him, he was able to support her in a way he would have never even considered before. He had previously never given much thought to M.S., but by learning through me, it became real.

And, in other employees, he has a compassion now for their medical journeys that he was blind to beforehand. He never had to think of people like that before, and he thinks that he is a better boss, and a better person, directly because of seeing me through my experience. This, THIS, is everything to me.

Remember, if you know someone with M.S., it's okay to talk about it with them, but unless you are a professional counselor or a physician, please remember that you are not a professional counselor or physician.

If you actually just skipped from one ribbon to the other, I am so upset with you right now.  I know who you are.

So, the timing of this is for a reason. March is M.S. awareness month. There are many M.S. walks, all that can be found here (click here) at the National MS Society, along with TONS of really, really, really, really, really, really, really, really, really, really, really, really, really, really, really helpful resources and tools.

The walk I go to is in Annapolis on April 8th, and I want you to come with me.

I did the walk last April, and allow me to share with you my experience. 
I signed up, expecting to go by myself, but I invited my mom, and she said she’d do the short walk. 
So, I got up that morning and got ready, and drove to the Navy Stadium, where it starts, and felt so incredibly silly. 
I was thinking, 

I can’t believe I am doing this, this is pathetic. There are going to be 10 people, and we are going to walk around Annapolis, and people are going to think, “wow, 10 people walking for something-or-other, big deal.” 

I felt incredibly silly.

Even as I pulled into the stadium, I couldn’t wrap my mind around what I was seeing. The parking lot was FULL. There were vendors galore, and bubble machines, and loud music, and TONS of people! And free food! I was moved to tears. They make such a big deal. It’s fantastic.

People were there supporting family members, friends, colleagues… I even saw some of my own colleagues, there supporting I don’t know who. I couldn’t believe it, I really couldn’t.

And crossing the finish line, no matter how long it takes you or how far you walked, they have people cheering you on, pom poms and all, just so happy that you are there.

Update:
Here is the link to my Team Page for the walk, if you can donate/join the walk!  For the full scoop on fun stuff,  Click here to be directed.