My Story

Heavenly Father has a purpose for me to be on this earth--to take a test.
He knows me, listens to me, watches over me, and even trusts me.  In fact he trusts me so much he didn't think twice by giving me a really hard test!  I love my Heavenly Father so much that I confidently accepted my test.  I had no clue how hard it would be, how hard it is, and how hard it will be.  BUT, I won't give up because of my love for Him who gave me this!  

I have a rare life-threatening autoimmune disease called Scleroderma.

Scleroderma means hardening of the skin.

There are different types of Scleroderma.  I have the kind called Systemic Scleroderma or also known as Systemic Sclerosis.  It's the bad kind.  It affects internal organs.
300,000 people in the United States have Scleroderma.  100,000 have the type Systemic Scleroderma.  Of those 100,000 most are African American.  I am pretty rare and unique :)  

In fact my Dr. back in 1999 announced it as this:

"I have some good news, and I have some bad news...

Good news is you don't have Lupus.  Bad news, you have Scleroderma. I am so sorry!"

I pretty much can't remember hearing anything else other than I had a 10 year life expectancy, that there is no cure, that I will probably not ever have children, and was warned not to get consumed in everything I read on the internet because every case is different.

I am going to skip about 15 years worth of all forms of pain.....

TODAY I am living a pretty normal life.  I have 3 beautiful children, a hardworking husband, and own a successful business.  I am in pain everyday but I feel very blessed!

I am a miracle.  

I believe in wishes, and in faith, and in power of the priesthood.  I believe in humility, love, forgiveness, service, compassion, and mercy.

I believe that there are easy parts in hard tests.  But I also know that there are even harder parts to a hard test.  I know that because that's where I am at now...

IN A HARD PART IN A HARD TEST!

I am writing in purple because purple is one of my favorite colors.  It's the color my hands/feet (and now even legs are) most of the time.  I was teased a lot for my purple hands growing up.  They don't hurt much anymore--I think it's because I am de-sensitized to the pain.  I have Raynaud's disease.  I have had it since about kindergarten.
I remember when they first went purple.  I came in from recess in October and loved to just hold my hands under the hot water in the bathroom. It stung like a bee-sting but quickly felt much better when the blood finally started to circulate.  Raynaud's is a circulation disease that is caused from veins narrowing (vaso-constrict).
Deep Purple was the name of my piano piece that I loved.
Purple was my wedding color.
Purple is the color of my bedroom/bathroom, and my little girls room.   

I found out a week ago that I also have fibermyalgia.

On April 24th I go see a neurologist and will be getting several tests to get some answers for some crazy symptoms I have been having.  My neck, head, shoulder has several VERY numb spots that never gain feeling.  I am loosing muscle/bone density down my left side including neck, shoulder, arm, and ribs.

My new Rheumatologist whom I LOVE is concerned that I have developed a rare nerve disease.  I have muscle enzymes in my blood which is most likely caused from muscle wasting due to the nerves not innervating the muscle.  Our heart is one of our biggest muscles and besides Lung disease, Heart disease is one of the first complications with Scleroderma.  So I will be getting nerve induction tests, echo-cardiogram, pulmonary (lung) function tests, and lab work.  

I know my field is full of dandelions...but I am going to turn them all into wishes!

I want to continue to be a mom, a wife, and a dance teacher.

I decided to blog about my Scleroderma Life so that I can hopefully find strength in experiences I have had.  I want to remember my easier parts on my hard test so when I go through harder parts those can be the new easy parts.

I never want to feel sorry for, never looked down upon, or ignored because of my health.

Sometimes it's hard to get through a day, a week, a month.

All I am asking for is a little bit of understanding.

I feel a HUGE need to thank my family, my husband, kids, extended family, and close friends that do so much for me.  I love you all so deep within my heart!

I have started a new medication to help with the pain.  It has made me sick--I have tried so hard to tolerate it.  I have had about 4 migraines in 2 weeks and been very nauseated.  I just started some anti-nausea medication but it makes me feel light-headed and no appetite.

I am hopeful that I will adjust and everything will be fine!
      

XOXO

Brittany :)