Monday, October 20, 2014

Continuing Hope

This post is extremely hard for me to share the pieces and glimpses of time.  There is continued......HOPE. 

Fighting to come up from being bedridden has been a mix of emotions. It has been one of the hardest things I've ever done. To one of the most exhilarating times of my life.  In my mind I really thought coming up would be easier than coping with being bedridden for some reason. I realized right off it was easier to give up than to fight everyday. But there was a time when I was very bedridden and everything seemed bleak, I decided fighting is what I wanted more than anything.  I decided I would do all that was necessary and took mentally/ physically to accomplish that goal. Little did I realize how much torture that would truly be. Looking back now, my hard work at trying to make my body move and my own physical therapy has payed off. I still feel like I got a lot of work to do, but I know I've come a long ways. :)

Coming up my eyes have been a challenge. The disease caused my eyes to have visible scars. Self consciously I wanted to hide them more. Especially, now that I'm getting out more in public.  Eye contact has been really hard. It was hard before just with my shyness, but now it is extremely hard. I wanted to hide my blue scars.  But I thought you know, I should look through these eyes of being proud of myself for not giving up, overcoming and accomplishing this crazy journey I called a prison.  To now see through these scarred eyes I see things differently.  I am truly blessed. Through these scarred eyes I see the beauty and simple things all around me. I love the outdoors and now its just magnified. The colors of everything mean more to me. My eyes aren't fully functioning, but I am blessed through these scarred eyes....... I can see. There is such a deep gratitude for everything around me that I took for granted before.

I also had to learn how to be in the world again. I am socially awkward as it was before, but communicating was a challenge of expressing what I had gone through. I often wondered, will people believe where I was, or what I went through or what I go through? I didn't let very many people into my home for I didn't want anyone to see how bad it truly was. It was humiliating to me. I thought you know, does it really matter what people think? People might not understand fully now that I'm coming up, but I realized and knew how much people truly cared for me and my family.

There has also been times I have felt so lost or alone. It was like learning how to be in my kids lives all over again. They were 3 years older now. They learned how to cope with a bedridden mom and they had to get used to me trying to be apart of their lives again. They were grateful I was coming up, but I felt it was confusing to them and to me. Coming up they weren't the same little kids as before. I wasn't the same in some ways too. It was another change and adjustment. From my husbands point of view he was just very grateful I was coming up. He always encouraged me to do things at my own pace. Especially with the house. It was very overwhelming to me to try to conquer those chores. At first it was very discouraging trying to move to do things. Sometimes I couldn't do things at all. He never got mad at how slow I was, or how messy the house was.  He was just grateful I was trying to conquer things.

I realize now, I missed out on my families life for a time, but what's most important........ is that I'm alive..... I am here. I have this opportunity at a 2nd chance at life now.

 I think it's time to share a glimpse of the examples of when it was extremely bad and to show you how I am doing now. We are keeping our fingers crossed I will continue to improve, especially through this winter. As most of you know winters have been extremely hard in the past. We are very hopeful this treatment and everything I am doing will continue to be that stepping stone to helping me get fully better.

This video below portrays a glimpse of my journey of what it was like. It is very hard to see myself in this video. It's hard to not be critical of everything I did, said, facial expressions and look like, or see the differences of what the disease did to me. It is what it is though. LOL I thought the guy (Brian Randall) who filmed me did a great job portraying of what it was like. Like I said this is beyond hard for me to share, but I share this video in hopes to give someone else a HOPE that you can come up from this. Just keep searching and trying. You can conquer and rise from the ground up. Whatever you do Please DON'T GIVE UP.   

The cover picture is a funny face, but all well. LOL

Here's my BX Story:

I still got work to do as you can all see. :) I am so Happy I'm improving. I am extremely happy I'm able to be a mom and wife again. I am happy I am able to start living and enjoying life again.

A  huge shout out and thanks to part of my doctor team;

To Jeanette and Nick Fransen for trying to help me find ways of fixing myself. You helped me realize I don't need to listen to doctors that told me I was going to die. I decide my own timeline and goals.

To my RA doctor, thank you for being open minded and for supporting me. Thank you for telling me not to give up.

To my eye specialists team and to the many other eye docs that come in every time I have an appointment to take a peek at my eyes to see their uniqueness. I feel like a celebrity. LOL  They are considered to be the best eye specialists in the state. I'm grateful for them.

A huge thanks to Dr. Dewayne Smith for giving me an opportunity to share my BX story and for helping me. Thank you for running into and knowing my dad. I can't deny how inspired that all came about.

And to Dr. Todd Mauer for being a huge part of my BX journey and a good friend.  You saw my disease at its worst times over the last few years, you physically had to help move me. It was like dead weight I know, because I couldn't move my limbs very well to help. You also gave me encouragement to keep going.  Thank you more than you know Todd!

I appreciate you all more than you know. Thank you for helping me get my life back. :)

And a huge thanks to my husband for not giving up on me. You have gone above and beyond the words, you stuck by me and loved me through thick and thin. I love you.

And to my parents, family and friends ( there are too many to name) who gave me encouragement. You also never gave up on me. 3 years is a very long time to support someone. I felt bad for that. You went above and beyond to help our family when we needed it most. You were understanding and a support to encourage us to keep searching for help when some discouraged us from searching. You showed a great love and support to us that we will be forever grateful to you for.

Please know I couldn't have gotten through this journey without any of you. Thank you for always being a continual support.


Enjoying life!


  1. Emily,
    You are beautiful and amazing! I cried the entire time that I watched that video! You have come such a long way! I'm so proud of you for being brave enough to share your experiences, even though I know that it is hard to share such very personal struggles. Your story is and will continue to be inspiring for so many people: those of us who know and love you and those that you don't even know. Thank you for being such a great example to me of hope and faith. While many talk about hope and faith, you live it day after day, set back after set back. I am constantly amazed and inspired by you. I'm so glad to call you my friend.

  2. Thank you sweet Angela! I appreciate your friendship more than you know. You have been there throughout this journey the whole way through and I will be forever grateful for that. Thank you for your sweet comments. Love ya!

  3. I am very very happy for you and your family. I wish you well Emily. Godspeed.


  4. Thank you David! I appreciate it! :)

  5. very great and inspirational story emily! my father is going through a disease right now, would you mind if i were to contact you through email and as you a few questions please? thank you!

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