I’m 37, married, and have two kids. I’m no longer working, but I was a nurse. Pediatrics was my passion. We have two dogs that are crazy spoiled & I’m often the mom taxi toting kids to various activities. It all sounds pretty normal, right?I also have MS. Yeah, that bomb is a big one.
Multiple Sclerosis (MS) is a chronic, unpredictable disease of the central nervous system. MS attacks the brain, spinal cord, and nerves. It causes blurred vision, numbness, fatigue, cognitive deficits, paralysis, pain, poor coordination, loss of balance, and SO MUCH MORE. There is no cure. There is no way to predict the progression. I have no idea if I will go a year without another relapse, or wake up tomorrow unable to use my legs. Both are real possibilities.My activity is limited. It is awful not knowing when I will have a good day, or how to plan ahead. When I realized this was my life, that I could no longer take on everything and hop back up fighting, I went through a period of mourning. Mourning for myself, for the mom I had thought I’d be, and the life I thought I’d have. MS has completely hijacked my life. While I still go through periods of mourning, I’m determined not to let MS win.
Hematopoietic Stem Cell Transplantation (HSCT) has shown amazing results freezing MS in its tracks. When learning about it for the first time I had hope. Hope I really needed.In fact, I was so excited & amazed I couldn’t stop thinking about even to sleep. HSCT has been used for MS in a clinical trial in Chicago, Denver and Seattle, amongst other places.In a nutshell, your immune system is killed with chemo, your bone marrow is stimulated to make excess stem cells, your stem cells are harvested, and eventually you get your own stem cells back. And wala, a brand new rebooted baby immune system. In HSCT the stem cell transplant's purpose is to help reboot the immune system into action faster. For more details on the science of it check out my blog post here.
MS is completely unpredictable and it's terrifying. At 37 years old I’ve already had to stop working, attend swallow therapy, &had to learn how to self-cath. The only chance of any future quality of life is to stop the MS progression.
I SO badly want to be the active mom and wife my family deserves. When the time comes, I want to chase my grand babies & host large family holidays!
I’ve recently been lucky enough to meet with a doctor in Cincinnati that wants to treat me!Additionally, she thinks that HSCT will help with all of my autoimmune conditions. I go big, with 3 possibly 4 autoimmune diseases. She has treated a local MS patient, who I have been in contact with.She’s also has treated countless cancer patients. I trust her.I get to stay local to have my 2nd chance at life. I don’t even have the words to express the relief from hearing her tell me she wants to treat me.
I’ve researched the heck out of this and looked at every option.I once was aiming for Dr. Ruiz in Pueblo, Mexico. I flew to Texas to meet with a doctor there treating in a very similar way.My only regret in exploring all of my options is that some of it took money that’s now gone. Being treated here, in a hospital 20 miles from home is really a dream come true.
Of course HSCT is not covered by insurance. To cover the cost of treatment & related expenses I need to raise around $58,000.(Did I mention I can no longer work?!)
Fundraising has been so much harder than I could have ever imagined. I’ve lost money on flopped attempts at events. I was full force full time fundraising for a long time. It was unimaginably exhausting. The stress was making me sicker. At the end of the day I had nothing left of me to give my family. I took a break for my sanity. I’m ready to get back at it, but not in the same way. HSCT is my goal. It’s imperative that I get there. I will continue to work towards it, but I can’t let fundraising run my whole life again. I can’t sacrifice the time I have with my family now. It’s too much. It’s too hard.
Right now I’m in a stage of starting over.
I need to figure out how much fundraising money I have after flopped event attempts and supplies purchased for making and selling.I need to make a plan on how I’m going to do this better. Bring in more money, and not completely burn out like I did before. I haven’t figured it out yet, but this is a start.
I’m researching everything I can think of to find discounts on medications and anything else I find that may help. Anything I find I will share the info and it will decrease the cost.
Fundraising is not my favorite thing on earth. It’s extremely hard not to take it personally when your fundraising to literally save your own life.
I’ve done emotional videos before, and I’ll find them to share. But I don’t think I’ll doing that again.It’s incredibly emotionally taxing, and it doesn’t change a thing. The first video took me a whole day and I still can’t watch it with out bawling.
The bottom line is that I need help. I need help to raise this money.I need help to get to the goal. I need help to give my kids me back. I need help to not live every day in fear of the next.
Please consider donating, every cent counts. Thanks for reading, now share share share! J
#Stronger #MSisBS #HSCT
You can follow me at