Thursday, October 20, 2011

i'll take the good with the bad, the happy with the sad, and put it all in Jesus' hands

 Since I was a teenager, every once in a while I would get severe neck pain, down my shoulder. I went to the doctor several times -- x-rays always showed nothing. I just chalked it up to a bad car accident that I was in when I was 16.

Earlier this year, I started having problems with my lower back hurting. X-rays showed nothing. It was always right in my epidural spot, so I just chalked it up to an after effect of that.

This year, I've also started having migraine headaches & bruising easily. At any given time I will have 5-10 terrible bruises all over my body.

Around the same time that my back started hurting, my youngest sister (I have three) was diagnosed with this rare bone disease. Oddly, my older sister was diagnosed with it when she was about 25. After some research, we learned it was genetic. I decided to check it out with my doctor.

Sometime around the end of August, I went in & immediately she confirmed I had blue sclera, which is one of the leading symptoms. It's where the whites of your eyes have a bluish tint. It's extremely rare. My doctor was completely shocked and before I knew it there were about 15 people in my room with me -- doctors & residents all wanting to have a look. 
"It's something we learn in medical school, but are always told we'll never see it in our careers."

Not exactly something a 26 year old woman at the prime of her life wants to hear.

Osteogenesis Imperfecta is a brittle bone disease. It causes bones to break extremely easy and with it comes a terrible amount of pain.

Since then my body has completely went WHACK. I have experienced the worst pain I have EVER felt in my ENTIRE life. Natural childbirth was 10000% times easier than this. I feel like my bones are going snap, crackle, pop! at times. Since September 7, I have had my back go out once for a week, my left hip go out twice for a week each, and my right knee go out for 3 or so days. I have to take heavy pain medication to even be able to stand breathing. It feels like someone is scraping my bones against each other with no tissue to protect it. 

I'm not telling you this for you to feel sorry for me. I'm being honest and real and saying that some days, I HURT. It helps that I can talk to my sisters about this. It helps that I have an amazing doctor (how I found her in the Army, I'll never know!) who is giving me referrals to wonderful specialist to help me out. I'll be traveling to Alpharetta, GA soon to get some genetic testing & a whole bunch of other test that I won't bore you with -- to determine exactly what type I have & where I am in the process.

There's no cure for OI. But I'm not worried. Because let me tell you -- I serve a God who is still in the healing business. I have proof of that sleeping in the bedroom right next to me. He will carry me through. I'm not saying I will never worry, because I know I will. Some days (like yesterday when my doctor told me she could get a walker or wheelchair for the bad days) I will cry my eyes out. But at the end of the day, I WILL turn it over to Him and I WILL trust that He will help me. 

We are not promised a life full of happiness & sunshine. If I EVER portray on my blog that my life is full of that -- let me clear it up right now that it's NOT. Most of the time, I choose to only write about the happy because it's what I want my girls to remember when they read this later in life. I just wanted to explain to ya'll why I may be absent for days at a time in the future. Some days I just cannot sit to type a blog. 

If you or anyone you know has this, please feel free to set up contact between us. I would love to learn more about this from a PERSON rather than GOOGLE. I have not googled anything further than what I shared with you at the beginning of this post.


Nancy said...

(((hugs))) and prayers. You have such a wonderfully positive attitude. How awful that all three of you have it.

Lora said...

Wow Stephanie. this is huge. I did not realize a person could even get to be 26 with this genetic disorder and not know it...I guess maybe that is a good sign? I have only ever heard of it in children, who experience multiple fractures and often even have their parents accused of abuse before it is figured out that they have OI.
Praying for you as you find more answers. Are they going to test the girls??

- dls - said...

Praying for you.....God is able to just speak the word and heal!!

Stephanie@SweetTeaAndSunshine said...

Lora, after I meet with the genetics counselor, we'll be scheduling the girls to get tested. My niece & nephew don't have it so I am PRAYING they don't have it, either.

HappyascanB said...

Oh, Stephanie. . . I am so sorry to read this. Bless you. I see your comment above that you'll be getting the girls tested.

How scary. Please know I'll be praying for you all!

Hope E. said...

I'm praying for you!

Lora said...

my goodness...I'm so sorry :-( I will definitely be praying for you! I've witnessed so many miracles just in the last few months, so be encouraged--HE is a great Healer!