My Story

I wrote this in the Fall of 2012 explaining why we we're doing the fundraisers. 

“In her words” 

I never imagined my life and world as I had known it would take a turn for the worst, very suddenly and very fast. You never know what life will bring. It can happen suddenly and you never see it coming. Life is so fragile. Cherish it!

At its worst, I was not able to move. It had got so bad that my husband Kent had to move me and carry me for every little thing. When he did move me and help me stand up I would scream in pain. I have never been in so much excruciating pain in my entire life. The pain was 10 times worse at nights. The only thing I can think of to compare it to is, child-birth. I would happily go through natural child-birth again than endure this pain. Kent and I have never heard such tortured cries come out of me when I was moved or carried. The pain-killer and narcotics did not cut the pain at all. I wasn’t able to open my mouth to eat, I couldn’t close my hands they were stuck out straight and each finger was crooked and swollen, I couldn’t touch my face or itch it. I was pretty much planted in bed. My limbs would not move. It’s like being tied down to a bed and being held down with ropes. And there is nothing you can do about it. It is sort of claustrophobic feeling. I panicked at times when I got that claustrophobic feeling. I would have to calm myself down and tell myself I was okay. I was told I was gaunt and pale. My mom said I looked like a holocaust victim. My parents began to visit often and were scared. For two months straight at its worst I was so dependent upon Kent he slept up in the bonus room with me in a recliner each night so he could be by my side in the hospital bed. When I had fevers and night sweats he was there to help me take the blankets off, because I could not lift even a thin sheet or move my hands to do anything to help myself. When I got cold he was there to put the blankets on. When I lay there in pain he was there and gave me ibuprofen.

I was dying and the realization of it set in. Doctors confirmed my fears. Hospice care and the people around me were telling me I was dying. I didn’t want to believe it or accept that was my fate. I made up my mind and decided I was determined to fight to live for my family. I had a picture of my family on my ceiling so I could look up at them each day. It helped me find that renewed hope, determination, and fight to live. I was bed ridden for a year.

I have a very crippling disease. Lyme’s disease which caused and manifested as Rheumatoid Arthritis.

Back in February I found a German doctor who has helped me and has literally saved my life. My recovery and treatment is very miraculous. It is a daily battle that I never imagined would be soooo exhilarating and hard at the same time. I call it a roller coaster of up and down days. I am currently rebuilding all the atrophied muscles in my body. At times I am still in a wheel chair, but I am not going to let that define me of who I am. I can walk short distances now. I don’t walk normal yet, but I am blessed to be walking somewhat again.

My medical treatments are a few thousand a week and are unfortunately not covered by insurance. We have exhausted our resources over the past year and half. We are doing fundraisers because we can no longer afford my treatment that, fortunately, has been working. My husband has been working several extra side jobs and it is just not cutting it. I am desperate which usually takes desperate action. To open myself up especially on FB is one of the hardest things I have ever done in my entire life. What it comes down to is that I am scared. To come from being healthy and running races down to having to admit to myself and to everyone else that I’m in a wheel chair and crippled is very hard. It is pride that I have to overcome, but I hope the next time I see people from my past or future it will be when I am happily walking and moving normal again. My hope is my story can help others and also bring awareness to Lyme’s disease, so people can get the help they need and deserve. For Lyme’s disease truly has become an epidemic that is being ignored.

I appreciate everyone’s concern and help over the last year of being bed ridden, especially a sincere thank you to my family, friends and my ward. I have been blessed! I know a lot of people don’t know about my situation, but know just being a friend or an acquaintance has meant the world to me.

A sincere thank you to all,

Em

This is the hospital bed up in the bonus room. My parents and my youngest brother’s family came to visit.

This is how we celebrated birthday's.

This was at a time I was trying to be up and spend time with my kids. I remember just being so weak and pleading to go go back to bed. And thinking, "Are we done yet".

The video is embarrassing, but it is what it is. I have major bed head. (Ha ha) This is one of the only videos I could find. I wouldn’t let Kent take very many pictures of me during that time. And dang, it's a huge video. I couldn't figure out how to shrink it a bit.