Wednesday, November 25, 2015

Hurts to share

It's the day before Thanksgiving and I'm sitting in my warm front room on my comfy couch listening to Christmas music while my daughter sleeps in her bed. I feel blessed beyond measure. I am praying for those without heat, a house, or furniture. I grieve for those who have lost a loved one or child and are facing the holidays without them. What I am going to say in this blog is raw. It is not meant to offend anyone...but this is my blog where I share my journey with MS and my road to HSCT and I want to be honest.
As many of you know, I've been fundraising for this $150,000 procedure. What you may not understand is how it will is the outlook. I am scheduled for an evaluation December 8th and 9th in Chicago. I will have an MRI, get some labs, and see a neurologist at Rush Memorial and the famous Dr. BURT at Northwestern (he is an immunolgist). They will review my mri, compare to previous I sent in, and review my timeline of MS. I will wait to find out if I am accepted for the study or not. If accepted, I will have to raise the full amount since my insurance doesn't cover. Once paid, I will be scheduled and it will go similiar to 5 weeks of one overnight stay in Chicago a week then two weeks admitted to the hospital. I will undergo daily shots to promote stem cell growth, then have a vascular catheter to remove my stem cells. Then...the high dose chemo to kill my immune system (which is what attacks my central nervous system causing the lesions). I will get my own stemmies back and wait for my blood cell count to be just high to head home (they don't like to keep in hospital because of higher risk of infections). I will come home exhausted. I will have three months of very minimal contact as I have the immune system of a baby at birth. I will have to watch what I eat and do as my body recovers from all of this. But it is building my new immune system. It is STOPPING MY MS!! what does that mean? While it is possible that my current symptoms will improve over the next two years, this will stop my MS from progressing. It will allow me to be who I am today still in six months with no more lesions. In July, the Dr said my newest lesion was millimeters from leaving me paralyzed. Lesions can be active....and grow. So that lesion may grow and I be paralyzed. That's the fear I face. Having to be cared for instead of being able to care for my daughter. Being able to work, teach kids church, babysit, craft, and so much more!!
A stranger sent me an email and said to pour out my heart. When I tried to on paper, all I could do was cry. I'm spending the holidays alone with my sisters live out of state  (but we have minimal conversation since my mom passed). The relationship is broken with my dad. I feel like I'm no longer family to him. my mom passed away 5 years ago. I feel so alone! I am grounded in my faith and know I have friends and that God is with me....that's why I keep smiling and keep going. But the last few days, it is hard. I find myself crying and asking God what it is he wants me to do with my life? What am I not doing that He wants me to be?
Let's rewind to four years ago. I was grieving the loss of my mother while still being strong because I am a single mom and I was the only daughter in the state. So my dad needed my help and I had a daughter to take care of. I got a job offer I couldn't refuse. I HATED it. I loved the people and the perks but the job was not me. I tried to fill that emptiness and I made some poor choices. I quit the job not knowing what else to do and then six months later, admitted to my wrong doing. I have taken the consequences and still kept going. I've tried to rebuild and do the best I can for my daughter and I. We live in a small two bedroom apartment that works well for us. We have been blessed with her seizures being under control for almost 7 months now after a very rough year! She has had some damage from her seizures but she is doing great in school now! I have recovered from my most recent relapse and have found ways to deal with how my MS affects me. This has meant a lot of sacrifices for us. My daughter doesn't get new clothes, go to the mall, or have other things she would like. But she has my love and all of my effort to be the best I can for her.
I've had garage sales, posh sales, craft stuff, clothing....all I can to raise as much as I could without having to ask for help. I've always been able to care for Ana with minimal help and I feel so *!*!**!*! (! (I don't know the right word) having to ask. It is needed though.
I'm not asking for money to buy my daughter Christmas gifts. I'm not asking for money to black friday shop or pay my court fees. I'm asking for money to help stop my ms so that in 5 years, my daughter will still have me around. I have learned over the last four years that nothing materialistic will fill the voids. My health is better than others and I want to be able to stop my MS from progressing. I want to watch my daughter graduate and be able to walk her down the aisle (yep single mom lol). I have been unemployed and doing all I can just so our daily needs are met. We were blessed with a box of food for Thanksgiving and a ham from our church! I want my daughter to know what Thanksgiving is. It's not the food we eat, the things we have, or black friday shopping. It's about friends and family. We are blessed to have each other and the countless friends and church family! I don't want her to lose me or have to take care of me before I'm 40. Please know that we are so grateful for all the help! Have a Happy Thanksgiving and may God bless you!

Here is the status. The hotel is 120. Taxi from one dr to another is 45. Food will be minimal. Amtrak is 80. Out of pocket is 500. I've raised 550. 300 stands in the way of me cancelling my evaluation. Please help!!!

If you would like to make a tax deductible contribution:

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