Rachel's MS/Spasm & Wheelchair fund
Donation protected
My name is Rachel Edington. First and Foremost, I am a mother of 3 amazing daughters, 3 awesome step children, a St. Bernard and 2 Toy Aussies and I love the Lord with ALL my heart, soul and mind. I have the most wonderful friends near, far and those I have met online, through my Joy Support Group or Gluten Free Mama. I cannot forget to mention, I am married to the most loving and caring man who loves me despite my illness, he takes care of me from everything to running my business of 9 years, Gluten Free Mama, to bathing me. I suffer from chronic illness that includes Multiple Sclerosis (MS), Trigeninal Neuralgia (3 types), type one 75% fixed by last brain surgery, Atypical, MS induced, and now I have Tonic Spasms or Seizures, that look very much like grand mal seizures, but very different.
I have been blessed to be one of the 350,000 people in the US that struggle with MS and I am equally blessed to have two rare disorders that can happen with MS, Trigeminal Neuralgia and now Tonic Spasms. In fact, tonic spasms only happen in 3-4% of the MS patients and I have been having tonic spasms, which in fact, the very first symptoms started when I was 17 years old. Living in a rural area, the doctors have not seen such a severe case or what they call "beyond their expertise". It isn't surprising to us as I am notorious for having the rare things happen to me or to my family. So they are sending me to the MS Institute for further treatment. In the meantime they are preparing me for a special motorized wheelchair.
I have slowly been losing my ability to walk over the last 5 years and since the tonic spasms have increased and since early March and mostly since my 9 day stay in the ICU unit at a local hospital, I have been having severe difficulty walking, only being able to walk a few steps in the morning. At times during the day, I can't even get up from my wheelchair to my bed and excuse me for being honest to the toilet. I also have lost most of my up close vision and have a lot of blurry or double vision. Most days I spend 95% in bed unless there is an appt or graduation or something important that I have to pull myself together for, mostly because I don't have a proper chair to sit in to be able to get me to and from places in the house or even outside and to be able to sit up in without triggring episodes. I have to have help come in each day, that we call "Rachel Sitters". The current wheelchair I am in has no trunk support and due to upper body weakness I now need a specialized wheelchair. (Below is me with my sweet puppy)
Doctors, Physical Therapist, and Occupational Therapist experts have concluded that a motorized wheelchair with upper body and trunk support, sufficient padding to sit and a specialized head rest to help support my head will give me some autonomy and allow me to be more active in my childrens, family, friends and church life. It will also have a tilt feature that leans back that will help me last longer upright with my family at my home, or out and about at my daughters tennis matches or my daughters recitals. It includes a special lift that allows me to reach from items from the cupboard or possibly if I feel strong enough bake again. Can you see me zooming around in a motorized wheelchair? Watch out Montana! (Mine will look like this, it will tilt vs. standing up, and it will have special modifications for my needs and be power pink.)
All joking aside, my illness is a serious illness. It just seems to get worse and worse and we don't know why. There is so much about MS that doctors just don't understand. We are headed to the MS Institute at University of Washington. We are still unsure if our insurance will cover this treatment, but we have to go. It's truly our only place left to go that has the possibility of treating me with the appropriate MS medications and treating and officially determining if these are truly tonic spasms or seizures and helping me properly. Please pray for me. Pray for wisdom of these doctors even before I get there. Pray that they will be kindhearted and treat me with gentle care as my spirit is really sensitive right now.
My wheelchair is being fitted for me and built as we speak. I am getting it in "power pink". The girls and I decided if I have to be in a wheelchair I will have to bling it out and go out in style, so we are going to figure a way to customize it with stick on diamonds or something. haha. It is very hard being 40 years old and already being in a wheelchair. I feel embarrassed and incapable, when I used to be supermom and very involved in church and schools. I am hoping though it gives me a sense of life again.
This wheelchair, we are still unsure that they will cover my wheelchair expenses, but we expect our part after the specialty features that my body requires and physical therapists, will be about $7,000. The other problem we have is we don't have a vehicle to load the wheelchair on for traveling, which means I am stuck at home. So if you know of anyone who is selling a vehicle already equipped with a lift or one that you or someone you know is not using that you could sell affordably, we would be ever so grateful. We are hoping to raise a minimum on $10,000 so we can afford the wheelchair and vehicle, but hoping for $15,000, since we have unknown medical expenses coming up too.
It is important to note that I refuse to give up proper and good parenting and to the best of my ability being a loving wife. We just had one child graduate from beauty school, two graduate from high school, one is in college at MSU (Go Cats!) and a 11th grader and 6th grader. My personal oldest, is going to YWAM, Youth with a Mission, on a missionary trip that begins with training in Mazatlan and then goes to place unreached. She will then attend University of Great Falls with nearly a full-ride in scholarships. One child is a pianist and singer, the other is a star tennis player. So it's important to note, whether I can get out of bed or get off the couch, I refuse to stop being a good parent. My Family below...
I also want everyone to know how humbling it is to ask for help. We are selling our business and not making a profit and are facing possible bankruptcy due to the business and other health expenses. Otherwise, we would never ask for help. I also want to say if you helped with my brain surgery, please just help by praying. I am so ever grateful to you for helping me whether this time or last time, try to get some sort of life back.
I want to fight this disease! The Bible says, "Fight the good fight of faith, lay hold on eternal life, to which you were also called and have confessed the good confession in the presence of many witnesses." 1 Timothy 6:12 (NKJV), "All those gathered here will know that it is not by sword or spear that the Lord saves; for the battle is the Lord’s, and he will give all of you into our hands.” 1 Samual 17:47, and "You will be secure, because there is hope; you will look about you and take your rest in safety. You will lie down, with no one to make you afraid, and many will court your favor. Job 11:18-19. So basically, I need to Fight, the Battle Belongs to the Lord, and there is Hope!
Thank you friends for your investment in my safety, my fight, and the courage to have hope.
Love in Christ,
Rachel Edington
I have been blessed to be one of the 350,000 people in the US that struggle with MS and I am equally blessed to have two rare disorders that can happen with MS, Trigeminal Neuralgia and now Tonic Spasms. In fact, tonic spasms only happen in 3-4% of the MS patients and I have been having tonic spasms, which in fact, the very first symptoms started when I was 17 years old. Living in a rural area, the doctors have not seen such a severe case or what they call "beyond their expertise". It isn't surprising to us as I am notorious for having the rare things happen to me or to my family. So they are sending me to the MS Institute for further treatment. In the meantime they are preparing me for a special motorized wheelchair.
I have slowly been losing my ability to walk over the last 5 years and since the tonic spasms have increased and since early March and mostly since my 9 day stay in the ICU unit at a local hospital, I have been having severe difficulty walking, only being able to walk a few steps in the morning. At times during the day, I can't even get up from my wheelchair to my bed and excuse me for being honest to the toilet. I also have lost most of my up close vision and have a lot of blurry or double vision. Most days I spend 95% in bed unless there is an appt or graduation or something important that I have to pull myself together for, mostly because I don't have a proper chair to sit in to be able to get me to and from places in the house or even outside and to be able to sit up in without triggring episodes. I have to have help come in each day, that we call "Rachel Sitters". The current wheelchair I am in has no trunk support and due to upper body weakness I now need a specialized wheelchair. (Below is me with my sweet puppy)
Doctors, Physical Therapist, and Occupational Therapist experts have concluded that a motorized wheelchair with upper body and trunk support, sufficient padding to sit and a specialized head rest to help support my head will give me some autonomy and allow me to be more active in my childrens, family, friends and church life. It will also have a tilt feature that leans back that will help me last longer upright with my family at my home, or out and about at my daughters tennis matches or my daughters recitals. It includes a special lift that allows me to reach from items from the cupboard or possibly if I feel strong enough bake again. Can you see me zooming around in a motorized wheelchair? Watch out Montana! (Mine will look like this, it will tilt vs. standing up, and it will have special modifications for my needs and be power pink.)
All joking aside, my illness is a serious illness. It just seems to get worse and worse and we don't know why. There is so much about MS that doctors just don't understand. We are headed to the MS Institute at University of Washington. We are still unsure if our insurance will cover this treatment, but we have to go. It's truly our only place left to go that has the possibility of treating me with the appropriate MS medications and treating and officially determining if these are truly tonic spasms or seizures and helping me properly. Please pray for me. Pray for wisdom of these doctors even before I get there. Pray that they will be kindhearted and treat me with gentle care as my spirit is really sensitive right now.
My wheelchair is being fitted for me and built as we speak. I am getting it in "power pink". The girls and I decided if I have to be in a wheelchair I will have to bling it out and go out in style, so we are going to figure a way to customize it with stick on diamonds or something. haha. It is very hard being 40 years old and already being in a wheelchair. I feel embarrassed and incapable, when I used to be supermom and very involved in church and schools. I am hoping though it gives me a sense of life again.
This wheelchair, we are still unsure that they will cover my wheelchair expenses, but we expect our part after the specialty features that my body requires and physical therapists, will be about $7,000. The other problem we have is we don't have a vehicle to load the wheelchair on for traveling, which means I am stuck at home. So if you know of anyone who is selling a vehicle already equipped with a lift or one that you or someone you know is not using that you could sell affordably, we would be ever so grateful. We are hoping to raise a minimum on $10,000 so we can afford the wheelchair and vehicle, but hoping for $15,000, since we have unknown medical expenses coming up too.
It is important to note that I refuse to give up proper and good parenting and to the best of my ability being a loving wife. We just had one child graduate from beauty school, two graduate from high school, one is in college at MSU (Go Cats!) and a 11th grader and 6th grader. My personal oldest, is going to YWAM, Youth with a Mission, on a missionary trip that begins with training in Mazatlan and then goes to place unreached. She will then attend University of Great Falls with nearly a full-ride in scholarships. One child is a pianist and singer, the other is a star tennis player. So it's important to note, whether I can get out of bed or get off the couch, I refuse to stop being a good parent. My Family below...
I also want everyone to know how humbling it is to ask for help. We are selling our business and not making a profit and are facing possible bankruptcy due to the business and other health expenses. Otherwise, we would never ask for help. I also want to say if you helped with my brain surgery, please just help by praying. I am so ever grateful to you for helping me whether this time or last time, try to get some sort of life back.
I want to fight this disease! The Bible says, "Fight the good fight of faith, lay hold on eternal life, to which you were also called and have confessed the good confession in the presence of many witnesses." 1 Timothy 6:12 (NKJV), "All those gathered here will know that it is not by sword or spear that the Lord saves; for the battle is the Lord’s, and he will give all of you into our hands.” 1 Samual 17:47, and "You will be secure, because there is hope; you will look about you and take your rest in safety. You will lie down, with no one to make you afraid, and many will court your favor. Job 11:18-19. So basically, I need to Fight, the Battle Belongs to the Lord, and there is Hope!
Thank you friends for your investment in my safety, my fight, and the courage to have hope.
Love in Christ,
Rachel Edington
Organizer and beneficiary
Rachel Carlyle Edington
Organizer
Polson, MT
Robert Edington
Beneficiary