With Faith

And we boast in the hope of the glory of God.  Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.
- Romans 5: 2-5

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Hey all!

 I wanted to update everyone. I've been trying to stay sort of vague in some posts for lots of reasons I'd rather not go in to detail about, but now I want to let people what is going on.

About a year and half ago I started having some pretty severe knee pain. At the time I was killing it in the gym, going 3 or more times week and PR-ing left and right. This knee pain made all of that really difficult. I tried ice and heat, braces and knee sleeves, and doctors. They just said it was over used and to chill out. So I did. Nothing happened. I got back in the gym, after all it had been almost a month now and I missed my gym buddies. I kept working out and even signed up for a Crossfit Competition, all while the pain was worsening. I just powered through, telling myself that it was just mental at this point, after all,the doctors had said it was nothing.

As the days grew closer and closer to the competition I was seriously considering not going. The pain had spread to my whole legs and after workouts they were numb and tingly. (Not the 'I just ran 10 miles and lifted weights I'm tired" kind of numb either.) However, I'm stubborn and never know when to quit so I did it anyway. Man o' man, I was in so much pain I though my knees were going to dislocate, I cried during every WOD, curled up on the floor during breaks, kept going when I should have stopped. But hey, I got second place. 

That was pretty much the end of it. I went back to the gym maybe 6 times over the next 4 months and then just stopped going. It was effort to walk up the stairs let alone try and do a WOD. I was embarrassed and angry. I used to be able to lift more than some adults in the gym and now I can't lift my leg?! Eventually, I just stopped talking to anyone from the gym. I felt weak and broken. I didn't want them to know what was happening. (Sorry Dex and Darian, if you're reading this). 

We continued to look for answers. Going to neurologist, rehumatologists, orthopedists, pediatricians, anyone. Looking for answers. We got none. If you've read past posts you know that they shoved me out the door a lot, told me I was lying, that I was looking for attention. You'll know that I was on a lot of medications that probably did more harm than good in the long run, but we kept going.

I finished school, graduated, and my parents let me do all my crazy solo adventuring- very reluctantly I might add. 

That whole summer was hard. I did a lot of walking and just kept saying everything's fine just keep going. 

When I came back it was back to the routine of doctors that didn't believe me and medications that weren't helping. That's when I decided I wanted to move to LA. A lot of that move was get a change of scenery. I wanted something new and fresh and fun. A little adventure before I went off to college, a whole different adventure of it's own. But somewhere inside me there was a part that wanted to move because I knew there weren't going to be any doctors out here. I could pretend I wasn't getting worse and just live life in the city. I wanted to get away from the emotional chaos that these appointments were causing me. 

So I did it, I moved, I had the best time of my life making memories and friends that I couldn't lose if I tried. My plan was move back at the end of November, have holiday time with the family and then ship of to school in the Virgin Islands with an Honors Scholarship and a great plan. 

But, if we've learned anything these past years it's that God's plan is not always our own. 

My pain was worsening which wasn't too bad because in a downtown city everything is less than a couple blocks away, but then came the mountain. Now, this mountain was both literal and figurative. I got a job as an ASL interpreter for a pilot TV show that was being shot by a friend. The first episode was taking place on Mammoth Mountain in California. I'd hiked before, I'd gone camping, piece of cake right? Wrong. I had recovered from some weird strep throat/flu thing and was prepared for the trip. I was left kind of fatigued from the sickness but figured it would go away. We started the trip, drove the many hours to the base of the mountain and started hiking. Cue the worst night of my life. The high altitude, rocky terrain and 5 degree weather combined inside of me. A half a mile from the top of the mountain I dropped. I turned around to interpret something for my client and fell. Right to the dusty ground. My legs gave out, my chest felt like it was being ripped open I couldn't move. I was desperately trying to rip off the 30 pound backpack on my back as I writhed in pain. I could not move my legs, I couldn't feel them (not a "it's so cold I cant' feel them" a "I'm not sure if I even have legs").  My vision was blurry and if I didn't happen to have some very kind and amazing friends on that shoot with me I probably would have kept going and done some serious bodily damage. I sat there for what felt like hours, but was more like 20 minutes, while my legs came back and my chest closed.  

We managed to wrap up the pilot in a timely fashion, getting all the footage and such that was needed and we all slowly made the decent back to the cars. I knew that what had happened that night was not going to help my situation at all.

Two weeks later I flew home and through several discussions with parents about health and college and a lack of communication from other parties I decided to stay in Georgia. Whatever I had was not getting better. It was getting worse and much faster than before. It wasn't a good days and bad days anymore; it was bad days and worse days. So, there I was now enrolled online through GSU (go panthers) and scheduling doctors appointments. 

The appointments started the day after Christmas. I won't take you through every single one because that would take forever and include some strong words about a lot of doctors I did not enjoy. I was written off again as it being nothing, maybe hormones- do this blood test and we'll see- nothing? okay great see you're healthy. One doctor even tried to diagnose me with Restless Leg Syndrome which is literally the furthest thing from what I have. Meanwhile, my pain is rollercoaster-ing all over the place and I've lost a lot of muscle function in my legs. You could put a 5 pound dumbbell on my leg and I wouldn't be able to raise it an inch off the ground. I bought arm crutches to help me get around. My legs began to contract and random periods and as I'm typing this my right leg has been contracting itself for about 10 minutes now. They twitch and go numb, a mind of their own. I kept calling doctor after doctor.

Enter: Emory Pain Center.

Yesterday (3/16/17), a doctor at Emory Pain Center finally gave me a diagnosis. One year and six months later. 

I have been diagnosed with Complex Regional Pain Syndrome Type 1, also known as Reflex Sympathetic Dystrophy. 

A diagnosis we thought I had a year ago, but couldn't get a doctor to believe me for.

CRPS/RSD is :"chronic neuro-inflammatory disorder. It is classified as a rare disorder by the United States Food and Drug Administration. However, up to 200,000 individuals experience this condition in the United States. It is a progressive disease of the Autonomic and Sympathetic Nervous Systems. And occurs after an illness or injury that didn't directly damage the nerves in your affected limb."*

There is currently no cure for this disease, but there are some treatments that can get rid of the pain. Any muscles I've lost though will most likely not recover, treatments have only been made to help the pain, but none have been able to regain or stop loss of function. 

I'd be lying if I told you I wasn't scared. Even though I wanted answers for what I have I never thought it would really be something like this. I am scared. I'll probably never be able to run again, which honestly isn't too big of a loss because I never liked running anyway. In the information packet they give you when you're diagnosed there's a section on 'Finding a Caregiver' and that's terrifying. The idea that if I injure my legs it could cause rapid progression or that in several years I might have a wheelchair is really crazy. 

It's okay though. I trust God so much with this. It's a rare disease with not a lot of people fighting for it and anyone can tell you I have a loud mouth and will be the voice of this. I'm one of the lucky few who "only" had to wait a couple years for a diagnosis; the average time it takes to be diagnosed with rare disease is 3-7 years. So I will fight, I will find new treatments and help who I can. God has a big plan for me, and I'm ready to follow it. I am ready to accept how he has made me. In his eyes I am perfect and I will use this diagnosis to glorify Him in whatever way I can.
I have a treatment in a few weeks and would appreciate prayers that I respond well to it so we can address this pain.
In the meantime, we begin this journey.

with faith we begin.

Truly, 

Abby

*definitions compiled from Merriam Webster Dictionary, RSDS.org, and RSDhope.com