ECHO & PFT

Today I went in for my Echocardiocram and Pulmonary Lung Function tests...I've had these before so piece of cake.  I had these done at Timpanogos Regional Medical Center in Orem.  I got checked in a registered and yikes...$2,872 for the payment due today.  I hate more than anything medical bills.  We will always have them so I might as well get used to it :/  Having a $3,000 deductible sucks and $6,000 out of pocket.  We are still paying off mine and Carrington's hefty $15,000 from having her and all my hospitalizations from preterm labor.  I am quickly reminded how lucky I am that Spencer and I both have great jobs.

Echocardiogram was first.  The man that did this test was so awesome and super knowledgeable.  I asked him if he's ever had a Scleroderma patient and he explained how excited he was so see that I was a young female with Scleroderma because he just got back from a special training and a young Scleroderma woman was the case study.  He said he hasn't had a patient in probably 2 years and has worked for almost 18 years in this field.

I was reminded how rare I am :)

My blood pressure was really high 148/97 and was also elevated at my last appointment.  He said he will be looking for any signs of pulmonary hypertension because that is usually was Scleroderma causes if affecting the heart.  Dr. Call ordered the echocardiogram because of my muscles being affected and wanted to clear that my heart (which is a very large muscle) is not affected.

It was only about a 45 minute ultrasound of my heart and was really neat to see.

I then did my lung function test because Scleroderma usually affects heart and lungs first.  It is a really silly test--blowing in and out of a mouth piece and a computer measures how much air I can hold, how fast I can push it out...Not the funnest test--kind of wears you out!  They then gave me a dose of albuterol that made me feel really shaky.  My hands were really shaking and I felt jittery.  Now just waiting to hear about test results!!!

While I was in getting the echocardiogram done I got a call from the Neurologist that said they had test results back from the MRI I had yesterday.  I immediately called them back.  They asked if I was still up north and could swing my their office before 5pm because my MRI showed abnormalities. It was 4:30 and my sisters bridal shower started at 6:00pm.  I told them I could and got on the freeway north to go to American Fork.  I called back and asked if the Dr. could just call me back and they said she could.  I turned around and went to the shower.  I never got a phone call.  They are closed on Friday so Monday I will have to call back...

MRI AND CONTRAST

Today I had my MRI (April 23rd) in Provo at Central Utah Clinic.  My aunt Melissa watched my kids for me which helped a ton!!  I got there and they fit me right in.  I got changed in scrubs that were WAY too big for being SMALLS...haha!  Then they started my IV but had to poke a couple times.  My poor veins are about shot to heck.  I went in for the first MRI which last about 45 minutes.  Then they pulled me out and put a neck brace thing around me and I was in for another 70ish minutes.  By that time I had to pee so bad I could hardly stand it.  When I thought I was done they came in to give me the contrast through my IV to see the brachial plexus.  Thank heavens that one only lasted about 20-30 minutes or I was seriously going to pee my pants--it was torture!!  It was pretty simple, they discontinued my IV and rushing to my aunt Melissa's to grab my kids before I had to go teach.

About to Payson I got real nauseated.  I had to pull over and started throwing up.  Luckily my kids were asleep but I sat there and cried.  I was so sick, my class was going to start, I text about every person I could think of to sub for me.  No luck--everyone was busy.  I called Kiersten bauling and asked if she would sub for me.  I felt so alone and she definetly heard me at a weak time I was at.  She said she would and I was so thankful--no words could explain.  I know it was the contrast that made me sick because by the time I got to Nephi I felt a lot better.  I dropped my kids off to Peggy's and I visited with her for awhile then taught the rest of my days dance classes.

I have had so much anxiety lately and having a hard time sleeping.  I am anxious to hear how the results are and what the next step will be.  My circulation has been really crappy lately and I am getting more bruising.  My hands are so swollen each morning and hurt like crazy :(

I know I am having a Scleroderma flare and really feel all of my symptoms stem from it.  I do not feel like I have a new nerve or muscle disease but I feel it's all caused from Scleroderma.  I should hear more hopefully tomorrow when I go up for my Echocardiogram and Pulmonary Function Test.

Neurology

This was something definitely new to me.  I have had some pretty crazy tests done (swallowing cookie test and tubes down my nose come to mind) but never been referred to a neurologist.  My appointment was on April 17th at 8:15am in American Fork at the Central Utah Clinic.  I could not sleep the night before--some of it was due to my nerves but probably mostly nervous that I would sleep through my 5:30am alarm clock! My mom kept my kids over night and she took Cody to school-Kaden spent the day at the farm with my dad.  Spencer had to work so it was just Carrington and I for the day.

The neurologist is a sweet, bubbly, optimistic oriental woman who was fantastic.  She was very easy to talk to and we got along great!  She documented a quick medical history.  She looked up my recent lab work and said Lupus test was not impressive and is negative.  She added that my A and A is off the charts (it's the test that verifies and autoimmune disease).  She then made a comment that Dr. Call ordered some very  interesting tests--I didn't know how to take that.  She then kind of stopped and didn't finish explaining the labs and said that Dr. Call would go over them with me at my next visit.  So, totally left me hanging.

She clearly said I had a nerve or muscle issue that could either be caused from the Scleroderma or a new disease appearing.  I had no reflexes on my left arm and wrist which was concerning to her.  She ordered an MRI of the neck and shoulder and also a contrast test of the brachial plexus.  And of course more labs.  She also scheduled me for a nerve induction test and muscle stimulant test.

I left crying....more health bills, more appointments (and all during the week of my competition), and I am just not the type of person who likes to spend my time on medical things for me.

I don't know what got into me but I cried and cried and cried.  

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 :)