Dear Racketboy Community,
I've been on-and-off the forums for a while, and I'm sure you'll understand that life has gotten in the way with being more active. But, I have some pretty big news that I'd like to share with you.
I have Clinically Isolated Syndrome (CIS). Hot off the presses and formally diagnosed just at the end of March. Oftentimes, this is a precursor to a formal Multiple Sclerosis (MS) diagnosis. MS is a disease where the immune system recognizes the brain as a threat, and attacks the myelin coatings within the brain. It can impact bodily function, cognition, and cause a wide range of disability. It is a lifelong disease.
This past fourth of July, I experienced some tingling sensations in my left arm. At the time, I reached out to my physician and asked what this might be. Given that I was pretty active, we thought it most likely was a pinched nerve in my back and/or carpal tunnel. The tingling went away after some time passed. But, shortly after the new year, the tingling returned, but had spread to my left leg and head. Immediately I reached back out to my doctor and was referred to a neurologist who specializes in Multiple Sclerosis. She ordered an MRI, which I did at the end of February. The MRI came back with several lesions on my brain, but thankfully nothing in the brain stem or spine.
I took a great deal of comfort in my neurologist's expertise. She has over 25 years in working exclusively with MS patients. I have no idea how nurses and physicians hold on to their optimism in a disease that is wildly unpredictable on a patient-to-patient basis. They are simply amazing people. With their care and guidance, I have become feeling more reassured and in a position to navigate my way through my diagnosis.
The lesions I have are on the white matter, and appeared similar as those typically present in MS patients. To rule out mimics, I did a load of blood tests, and a lumbar puncture to draw cerebrospinal fluid samples. This was by far the worst procedure, and I just was unlucky to have a nerve touch/get sucked into the needle. My whole right of the body felt like Thor was calling Mjölnir and all of its lightning into me. Definitely worth laughing about now, but good lord did those few minutes suck. I am in awe that some patients with certain types of blood cancers undergo that procedure multiple times. Folks who have to endure spinal taps on a semi-regular basis have loads of courage.
It goes without saying that I'm incredibly privileged in all of this. My disease and symptoms are mild. Aside from some tingling and burning, things are going okay. My current level of disease appears to be "invisible" to passerby's. I'm still temporarily able-bodied, and I have access to a great team of physicians.
I mention this because health care disparities for diseases like this certainly exist for people in our country and around the world. In two decades, treatment has exponentially improved for MS patients. It's truly a marvel of science to see how quality of life for MS patients by-and-large has improved. But, access to those medicines however is expensive, which may not surprise you. So, I want to call further attention to the matter and do what I can to help a community that I now find myself in. Research can help make generic versions of existing treatments more widely available, and greatly reduce cost to make them more affordable. The National MS Society also assists with outreach and patient advocacy where it is desperately needed.
I'll say that none of this was what I was expecting when I was rounding the corner for birthday #35. I've gone from initially feeling like this was a death sentence to feeling positive and cautiously optimistic to do my best to "do this thing."
Right around my birthday I'll begin a disease modifying treatment. I'm optimistic (and my caregivers are too) that this treatment will help slow the progression of the disease, and thus help prevent further disability and symptoms. It will weaken my immune system; it's my immune system after all doing this. This may carry a risk of infections. These are calculated risks that provide a high ceiling of benefit.
But through all of this, I'm blessed to have the love of my friends and family who've helped us through the ups and downs of the past two months. I'm simply left without words how thankful I am. Currently, my outlook is to take it day-by-day. I think that's the best I can do to keep perspective. How my body responds to treatment, how future MRI's look, adopting a healthier diet, regular exercise, taking vitamin D every day for the rest of my life -- all will play a role into how this tale plays out.
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So, if you've read thus far, are you curious how this information involves you? Well, I was actually just accepted into this really unique and cool program called Meat Bike. It's part of a larger organization, Meat Fight, (https://www.youtube.com/watch?v=UylOR2N ... ceLaussade) a Texas-based 501(c) that helps provide fundraising for people living with Multiple Sclerosis. I'm really excited because I'll be able to find a community and also keep myself healthy, which will be really important going forward as far as my disease is concerned.
Being accepted into this program means:
* I'll commit to a 100km / 100mi bike race in the next six months. This will likely be a Bike MS - series bike race.
* I'll commit to fundraising at least $200 to help pay it forward for future applicants to receive a bike.
* Meat Bike will outfit me with the bike, gear, and training to train and compete in an endurance bike race.
Here's where you come in! I want to take a creative approach to fundraising. I still love video games! And what better way than to incorporate video games in a charity auction / raffle for the National MS Society. I have some wicked games, but I'd be willing to part with them to raise money for charity and this organization. I obviously wouldn't expect folks to contribute items of their own, but I know how we've done charity auctions in the past and we've had really good results.
So, I'm just curious if folks might be interested in doing another event and raise some money for the National MS society and Meat Bike! What are your thoughts?
I can have more details come forward here in the next few weeks, just let me know!
Sincerely,
Blu