First, look to the right and click play on “Rick’s Tune of the Week”
As I mentioned in my last post, I received official word yesterday that I do NOT have Muscular System Atrophy, and almost certainly do have Cerebellar Ataxia. I am absolutely thrilled by this discovery, as having any diagnosis is a relief, but it also means I’m not dying. The prognosis for a patient with MSA ends in death, and the lifespan can reach up to 18 years, but it’s usually half of that. Or less.
That fact, hanging over your head, and the infinitely more beautiful head of my wife and kids, is intimadating. It’s substantially harder to remain strong and positive with death looming. I am convinced I was prepared to do just that, but the relief I felt when I was told I didn’t have to worry about that specific disease…that specific method of dying, made my heart jump, just as it jumped when I first met Meghan, just as it did when she said “I do”, just as it does everytime I spend time with the kids. It felt amazing, is what I’m saying.
While I still have an absurd amount of relief rushing through my veins right now, I am always looking ahead, around, and behind. I need to know and understand the whole picture, always have. Right now, the whole picture involves a potential lifetime of doctor and specialists visits, steroid infusions, therapy sessions, and medications. In short, a lifetime of medical bills and only one of us working to pay them. A struggle that is difficult to face. Not as difficult as death, I’m aware, but a struggle nonetheless.
I’m prepared for everything coming my way. It won’t always be easy, I know that, but I will face each new obstacle and overcome, and I’ll do so with a smile on my face. I’ve smiled more in the last 6 months than I ever have in my lifetime prior to this, and I equate each smile with a middle finger to Ataxia. I’ve found inner peace through prayer. I believe I’m being looked after by some sort of guardian angel who will no longer accept my previous negativity, and continues to guide me, daily, and shows me how blessed I truly am.
All of these changes have helped me cope, and fairly well, in my opinion. There is one thing that has helped me more than all of that, and you’re reading it right now. This blog has truly been the thing that kept me moving forward, even when I could barely move. I get to share my story with all of you, which provides me the opportunity to unload some thoughts and emotions, but the best part of this blog, is all of you. I need to say a special thanks to each of you. Your prayers, support, kind words, and compliments on my writing have inspired me in so many ways. First, only each of our gods knows of your prayers, but as a believer, I believe without a doubt, that they are being answered. Each of your well-wishes in the comments and on Facebook uplift my spirit. Each time I see the viewership climb when I post, I feel the support. I know, even if it’s only a few minutes, that you are with me, I can actually feel it. I never performed well in High School, but I have received countless compliments on my writing style, which inspired me to write more, not only here, but I have started writing a book, a story of my life which revolves around the past 8 months. It’s much better written, and despite the fact that it is taking forever to put the words down, I’m determined to finish it. I know very little about the publishing process, so who knows where it will end up, but if all goes well…
The thing is, I enjoy doing this. It allows others to briefly experience my life, and while it may not always seem like it, my life is amazing. My family, friends (past and present), friends of friends, and complete strangers (some from around the world) have given me hope and inspiration, and that is enough for me. That alone is worth the time it takes me to type or dictate each post. It’s each of you that keeps me going. Thank you.
After all you have already given to me and my family, I’m going to reluctantly ask for more. I’ve decided to have a short fundraiser, and it involves some fun gifts, just in time for the holidays. If you go back to the home page, just click the “Short Fundraiser” link and do some shopping. All proceeds will be used for the overwhelming medical bills, past, present, and future. A very good friend of mine, Steve Klohn, referred me to his daughter, Andrea Klohn, to help design my new logo. It’s amazing and exactly what I asked for. She is an amazing talent. One of my wife’s co-workers and his wife, Michael and Suzette Boltz, are handling the printing on the mugs. They do great work, and you can see some of it here. Also a thank you to Avant Graphics for the great service and pricing. I wanted to do a fundraiser that was more than collecting money, but instead, a (very limited) shopping experience. You get something(s) in return for giving to me and my family, once again providing support to my cause. Please, if you find it in your heart, make some purchases, share this post with your friends and family, and know how much it does and will continue to do.
My cousin has also started a Gofundme, which can be found here.
The store will only be open until November 26th! I will then place my orders, and once I have them(up to 2 weeks), I will immediately begin shipping them, and shipping costs have been built in. Each item can be ordered in any qty. by clicking the number “1” below that item, or using the arrows to the right of that number. If you move your mouse over that area, you’ll see them. On some platforms, the link, “Short Fundraiser”, can be accessed with a turquoise menu button located in the header of the Home page. Click it, the click the link, again titled “Short Fundraiser” or simply follow this link. If your size isn’t listed (3XL-5XL), email me at firstname.lastname@example.org, and I’ll add it for you.
Please share, I’d really like to see more growth and reach more people with this fundraiser…
Shop is Open!