Monday, September 5, 2016

Hello all!  I know I have been MIA for the past few years.  But with my current health crisis I need an outlet!  

As many of you have heard I have been going through some crazy stuff!  I have Scoliosis, this is a disease that causes a curvature of the spine. mine is shaped like an "S". This condition gets over looked so often because no one really talks about it. Here is my last years xrays. This years were not digital so I don't have a great jpeg to share. SO its much worse now.  




You probably know the weird kid in your class growing up with the back brace that everyone made fun of. Well I was that girl. I was diagnosed at 9 with a 18 degree thoracic curve, braced at 10, (wore that brace 23 hrs a day for 5 years) and doctors tried to scare us into fusing my spine when I was 12 when I hit 68 degrees.  I was able to get it down to 55 with chiropractic, exercise, yoga, massage therapy, and PT.  I have been dealing with this disorder for a very long time.  But this last year my curve that has held at 55 degrees since I was in my late teens, decided to increase dramatically just to add a little fun to my life. It jumped up to 83 degrees and the added pressure is literally causing major degeneration of the vertebrae.  And lots and lots of PAIN!   



I need this to be a place to vent my frustrations, share my triumphs, and gain some support! I was told my curve would not progress by more than a few degrees as an adult.  And my doctors are still at a loss for why now and why so fast.  Its terrifying and extremely painful.  I have a very very long road ahead of me to try to avoid a fusion surgery that has a very high failure rate. something like 80%.  But that is the only form of  treatment insurance wants to pay for. Something that will only cripple me further!  

I am so frustrated with the way insurance works.  So because of this and the fact that I have to treat it now as fast as possible I have to put about 10k on a credit card and a medical loan to pay for the travel and first part of my treatment.  

This first step is a 2 week treatment boot camp in NewYork called ScoliSmart.  You should go check them out.  Its pretty amazing what they do!  Here they will make custom equipment for me to bring home.  This will get my spine more flexible, help with the pain, and hopefully straighten my curve out some so that again less pain and stress on the spine.  

Also It could put me in the range to be able to do a new ish surgery called Vertebral body tethering. This surgery will help to straighten my spine as much as humanly possible while allowing for me to remain flexible. Its also way less recovery time and has a HUGE success rate in terms of keeping the spine straight and reduction in pain. I want it so bad!  But again this is not covered my insurance and again I have to travel to the only doc in the US that will do it on adults.  He is in New York as well.   Maybe I should just move there ha ha ha! 

Anyways, in the mean time I have been told to stay as active as possible and to continue to do my workouts.  So you will still see me running around town doing things. I try to use my few hours of energy for fun things like swimming with the kids or walks with Brock or essential things like grocery shopping ha ha.  

You will also see me smiling and being happy no matter what because that is who I am!  I can't help it.  SO many people don't believe the chronic pain I am dealing with because I refuse to let it ruin my life! I have been in chronic pain since I was 9.  I know the drill. Yes it is way more intense.  And some days are worse than others.  But I refuse to stop living my life. 

So ya, you may see pics of me walking a trail in Sedona, but you wont see the pic of Brock practically carrying me to the car on the way back.  

You will see me at the park with my kids, grocery shopping, going to the gym, riding bikes to school, and a million other things. But you don't see me laying in bed the rest of the day or two days.  Or Brock carrying me up the stairs to our bedroom cause my muscles are going so crazy and my nerves are so inflamed that I can't lift my head let alone walk.  

It may seem silly to keep trying to be active when the pay off seems so crazy.  But again, THIS IS ME!  I love love love playing with my kids, being a mom, a wife, an active person and no disease gets to tell me how to live....  Also my Drs. assure me that this is the best thing I could do for myself.  The second I give up is the second I end up 100% crippled.  NO THANK YOU!  I will do everything in my power to remain active and enjoying life.  Including going into debt for treatments that will actually work!

Yes my disease is making that extremely hard right now but, I do what I gotta do!  So please, my biggest fear is people seeing me out and about and then seeing my Facebook and blog posts and thinking I'm a faker.  I am not.  This is real. 

Thanks for reading! I hope I don't sound like a crazy person!  Also If you would like to help us out with our medical expenses we set up a "You Caring" fundraising account.  This site does not take a profit so all you donate goes to the cause! I have years of treatments ahead of me and non of it is covered my insurance.  So every little bit helps!  Share my story and donate if you can thanks so much.