Stem Cell Transplant to Stop MS

Friends, family, generous people I don't know, I NEED your help! After spending the week in Rochester at Mayo Clinic, I am losing my legs at a much faster pace than ever expected as well as organ and other functionality. I am needing to raise money for a Stem-Cell Transplant that insurance won't cover since it is still considered experimental at this point due to it being in Phase 3 clinical trials. After years of failed attempts with every MS medication known to man, injections, infusions, pills, and more pills, my body has not reacted to any of them. This is my ONLY option to stop this disease in its tracks! It doesn't have to be much but every penny adds up! Thank you, from the bottom of my heart, thank you!

I have been battling MS coming up on 13 years on December 9th. A day that no matter what MS is doing to my memory, I will never forget. I know it seems like something most can handle, and it is. I've done it this long but I can't do it any longer. I can't. Time is of essence for me, for my ability to walk, for my organs not to fail. I need this transplant, this miracle that has proven to work for so many people already, I need help, I need YOUR HELP!!

Nearly everyone knows someone with MS, but what most people don't realize is that none of us have the same problems from it. That is because our lesions (damage to nerves) are all over our brains and spinal cords and not all in the same places. Most don't even know what our problems are because as humans, we only let people see what we want them to see of us. Most of us hide what we are going through because it's embarrassing and because of the judgment we get. It's not that people do it on purpose and we know that, but it's because they care and try to help by suggesting remedies that just don't work for us. So for many, including me, it's been easier if I just don't talk about it and stick with the "I'm fine" response. Well today, I'm going to share all of the details because I am NOT fine and I am ready to stop living this way and.....I am desperate and need your help!

I met with the Director of Neurology and his fellow at Mayo Clinic in Rochester, MN last week and was told that a Stem Cell Transplant is my only option to stop the progression of my MS. Here's why!

I wake up every morning and before I even lift my head, I open my eyes to see if I can see that day, then I test my motor skills and if I can move my limbs. Weird right? Not for me! I am losing my legs due to severe spinal cord damage and becoming a paraplegic. I get around by holding onto the wall, the countertops, other people, furniture, my cane, and anything else I can grab to stop my face from hitting the ground. I drag my foot and my leg along the ground because lifting it is nearly impossible and when I do so that I appear to be 'normal', it feels as if I have an extra 50lbs wrapped around my leg and it is exhausting!! Each time the bottom of my foot hits the ground, an electric shock travels from the bottom of my feet all the way up my legs. I have to think of my foot placement with every step I take so that my ankle doesn't give out or so my knee doesn't buckle. Then I think to myself, I can see, I can move my limbs, today we aren't going to have any accidents and it'll be a good day!!

Yes, accidents. I have a spot in my brain that causes me to not be able to feel when I need to use the bathroom until I have to go RIGHT NOW! My bladder and my bowls spasm and contract all day long. Now with the spinal cord damage, this causes roughly 35-40 trips to the bathroom in a day and with the way I walk, I don't always make it in time. This causes multiple bladder and kidney infections as well as damage to my kidneys. You know how as parents; we tell our children to try to use the bathroom before we leave the house? That is how I have to be treated also.

My heart is healthy and strong but the rhythm is off. The nerves that control the electrical side of it's functionality short out and my heart rate is low, at times it gets down to the 30's. If you would have mentioned the word "pacemaker" to me at this point in my life, I would have thought you were insane. Turns out it's not.

Swallowing is a fun one. This is something we don't ever think about, we chew our food and swallow. We take a drink of water and swallow. I have to think about it and make sure that I'm swallowing at the right time. I have to think about how to move the muscles in my throat to swallow because sometimes when I'm done chewing and go to swallow, nothing happens. It just sits in my mouth waiting for me to do something with it.

Oh you dropped a penny on the hard floor or on the counter and need to pick it up, too bad, that coin has to stay there because I lost that fine motor skill to pinch items. You like to lay on the couch or in bed on your cell phone and not have it smack you in the face? Nope, I can't do that either. How is your coffee this morning? Good? Great, mine is on the floor making it all sticky because I dropped it and wiped it up the best I could but will have to go back to it later or tomorrow to mop it. My daughter told me one day that pop sockets weren't cool anymore....well for me they are because that is the only way I can hold onto it. Wonder why those three little dots show up FOREVER waiting for me to hit send because it looks like I am typing a book and it's only a sentence? Moving my fingers across the screen is a slow process with lots of typos and corrections. I tell my finger to hit a "G" and I hit every letter around it and most of the time don't even hit the letter I wanted.

I spend the majority of the day in a what we call "brain fog". In my brain my thoughts are clouded like when you drive through fog on the highway. I can kind of make them out but not clearly so it takes quite bit longer for me to form my full thought or remember things. We all forget things, but the things I have forgotten are gone and never coming back. There are several memories that other have that involve me that I have absolutely no recollection of. Things I have done over the years that most would never forget about, gone. Some are long term memory losses and some were this morning.

Most people either shower in the morning to wake up and get going, some prefer to wash away the day at the end of the night. For me, I have to shower when I have the most energy in the day. That could be 10am, my lunch hour, or at the end of the day when I'm ready for bed. Why? No matter what time of the day I shower, it has caused me to lose every ounce of energy I had as well as my legs, so the first place I go after a shower is to lay down and recuperate what I can to get back up.

The pain is indescribable, they refer to it as spasms. These spasms are like being electrocuted and your twitch and kick. They feel like a charlie horse, like being stabbed. Is there medication to help with it, yes. Does it cause a whole new list of problems due to side effects, for me, yes! I can't soak in the bathtub, I can't soak in a hot tub, heat is bad. Cold is bad. Massage helps but not for long so it's almost something that would need to be done daily and hard to do when today it's a leg and tomorrow it's your jaw. It jumps around and nothing is consistent.

Fatigue is something that is the hardest thing to describe. We all get tired and we all feel exhausted, unless you have a condition that causes the type of fatigue I'm referred to, thankfully you don't understand. I can't just take a nap and feel better, I can't get more sleep at night and feel better. Moving around in the day is like having weights tied onto you holding you down and making you have to work so much harder just to lift your arm. Brushing my hair is not an option, I can't hold my arms up that long. Doing household chores is 1 chore in a day. Maybe I can do another one the following day but usually unlikely. When I push through a day to get everything done I have to do, I then am in bed for the next 2 days recovering. Making plans for next week, not a chance. I can't tell you how I'll feel in an hour, let alone a week from now. Most people try to live for the day, not in the past and not in the future. When you have an illness like mine, we live minute by minute because that is how fast things change.