If "Plan A" Didn't Work....

Just a reminder, the purpose of this blog is for my documentation.  I have to be honest and very detailed so my Dr. and I can evaluate what's best for my health :) I'm doing good though!

I have been in a pretty consistent flare. Some days are worse than others but overall I have pretty much felt like throwing the towel in.  In fact there are days I want to lay in bed all day and never get up.  But I do get up because I have to (kids ready for school, take care of my baby, teach classes) and that's a blessing!

When people ask me what happens when I'm in a flare its hard to explain.  Pain, swelling, stiffness, achy, fatigue, cloudy minded... are a daily occurrences but then times it by 100 and that's how I would describe my flare.  I go into a "survival mode" and literally just try to get through one day at a time the best I can.  About 6 weeks ago my flare started and this time it has stuck around.  I called my rheumatogist and he was able to communicate with my local primary care Dr. and help me.  I was able to get a toradol shot to take the edge off and then I started a round of prednisone.  I took that along with immuran and all my other meds.

Did it help?

The first few days taking 3 pills a day I felt no change and wanted to give up.  About day 5 I felt better but did experience some crazy drug withdrawal symptoms when I titrated from 2 pills down to 1 a day.  I was nauseous, shaky, and panicked.  A few days after completing the prednisone I felt good but then I have felt right back where I was :(  I also started loosing my hair.  And I mean by the locks!!  I can only wash and blow dry my hair twice a week or I'm afraid it would really be in rough shape--so a little understanding on the bad hair days would be appreciated ;)  I also have had more acid reflux so went on medication for that.  I still have fatigued swallowing but usually only in the evenings....haha too tired to swallow is a pretty crazy feeling.

I wake up every morning more puffy and swollen/stiff than the day before.  I don't remember being this bad since high school.  My fingers look like sausages when I wake up and it takes about 90 minutes for the stiffness to go away.  My drs always have me make a fist to determine swelling. I can't make a tight fist most mornings anymore due to swelling and tightness.  Here is a picture I took last week when I first woke up.  Spencer kisses me every morning before he goes to work and I am usually sleep-talking but he says almost every morning I hold up my hand and say, "Spence look how swollen my hands are.  They hurt so bad."

Even my feet are swollen..they don't even look like my real feet at all.  The swelling does get better as the day goes on but it used to go almost entirely away after the first few hours of getting out of bed.  Its hard to live like this for the majority of the day.  

At my Dr appointment I showed him my nail beds.  I am getting lots of thickening and dilated blood vessels that rupture (the little black dots in my cuticles).  That is caused from lack of oxygen.  So Dr. Call decided to try a different medication for my Raynaud's disease called Norvasc.  I was on that years ago but I developed such low blood pressure after being on it for a long period of time so hoping I can just take it during the winter and spring then go off it.  Basically what it does is block calcium into the smooth muscle cells that line the arteries which relaxes arterial muscles and dilates other arteries of the body.  It is a calcium channel blocker. 

He also switched my steroid around.  I went off Immuran--wahoo (it was a nasty drug that made me feel like a zombie with the stomach flu), and now I'm on Plaquenil-- it blocks inflammation.  Since my Scleroderma has flared so has my fibermyalgia.  I've been taking an anti-depressant called Effexor which helps take away the overall superficial pain.  But, I haven't seen a huge improvement while being on it so we thought we would try one last time and pre-authorize Cymbalta through my insurance (they've denied it 3 times).  Good news is that they approved!!  Cymbalta is the drug of choice for my situation so this was super good news.  I will continue taking Prilosec for acid reflux. Oh and I haven't been getting headaches like I did on nifedipine--yay!

I have been on these meds since November 19th...Have they worked?

Yes--Some!  I am not feeling quite as tired.  But pain has been super bad in my hands, feet, ankles, knees.  My calcium deposits have worsened on my extremities.  I had x-rays ordered and they found calcium deposits on the top of my patella and bone spurs on the back.  I also have them in both elbows.  On my left knee and right elbow the calcium is breaking through the skin and causing lots of pain...Oh my heck can I just hit my funny bone once a day in exchange and call it good?  So, during Christmas break I get elbow and knee surgery.  

AND...If that wasn't enough to soak up just wait :)

Since I have met my OUT OF POCKET MAXIMUM I requested to get my routine PFT done by the end of the year.  That is short for a Pulmonary Function Test (lung function).  I do these twice a year for early detection for fibrosis of the lungs called Interstitial lung disease, or Scleroderma can cause also cause Pulmonary hypertension.  I have always been 95% or higher on my PFT.  I dropped down to 80% lung function.  I STILL haven't heard all the details of what the plan is but I am going to really push that we get on top of this.  That is a big change in a short amount of time and I am not wanting to watch it drop in the meantime.  Drug of choice for this issue is one called Cellcept or else there is Chemo.  I will know more about this route later this week when I go in for a med consult.  I had no idea you could go on chemo other than for cancer so that's something I have learned.

In the meantime my hands are swollen, my knees ache when I get up from sitting for long periods of time an cannot kneal, my elbows kill--even my shirts rubbing on them hurt, my swallowing is weak, and my hair is falling out...HAHA I'm a bit of a mess!

I truly believe that having something to look forward to helps see the light at the end of the tunnel.  I asked Santa for halo hair extensions to help with my thinning hair and I can't wait!!  So that's one plus :)  But I'm going to keep on going and fighting hard.

Also, I have found SO many people on instagram and facebook who are close to my age with Scleroderma so that has been really neat to see their strengths to help with with my challenges.  They are amazing women that help me to keep going. I will blog about them all on my next post :)   

Last week I was in a horrible depression with all this news on my knees/elbows then my lungs so I really have appreciated kind words and support. I found this quote and OH MY HEAVENS IS IT TRUE!  I'm looking forward to a good week :)

XOXO Britt :)

Because it matters!

On September 20th I anxiously attended my first Scleroderma support group.  Until this year I have been completely private and quiet about my health.  I would tell about it here or there but never IN much detail.  I will be honest and say that after I had Carrington my Scleroderma has "flared" up...which lead me to where I am now.  I now see the importance of support, funds, education, and friends.  I knew I didn't want to attend by myself.  It was BYU's home game so I knew Spencer wanted to go to that and I didn't even ask if he wanted to go with me.  Plus, I don't know if he is really ready to understand and experience more than he already does with Scleroderma.  My mom has been around people with Scleroderma at national conferences so I asked her to go with me and Carrington.  I was so happy that she wanted to go without hesitation.  My sister Bailey had work off that weekend and was coming down so I asked her to go with us and she agreed.  So, we headed up bright and early.
We went to the Univeristy of Utah Hospital where a staff member directed us to the long walk to the meeting room.  There I walked in and first noticed a couple older ladies and then I turned to my left and there was a girl I knew had to be Rachel.  She is kind of like the president of the group and I met her on facebook through a mutual Scleroderma sister April Clyde.  Stacey Blackham, now Stacey Clyde is a few years older than me--we did drill together and were good family friends but her sister-in-law is April who has Scleroderma.  We have become friends over facebook but have never met prior to the meeting.  April invited me to the meeting and got me acquainted with Rachel over facebook too.  I immediately said hi to everyone then went and gave Rachel a hug.  She was in open fingered gloves and you could tell her hands hurt.  Most of the people in the room looked a lot like I had imagined.  We all have the cute little Scleroderma noses, small mouths, no lips, big teeth, tight skin, and purple fingers.  Most of them had a spouse with them.  One lady was on oxygen.  I was the youngest (I think anyways)--but Rachel may have me beat on that :)  My mom was a good one to break the ice and ask around what type they had and a little bit about them.  It was interesting to hear everyone's story, current battle, and attitude.
Honestly that's the one thing I noticed right off the bat...EVERYONE had a good attitude.  No one complained.  The cute little lady on oxygen told us about her right heart cath she had done a few days prior for monitoring pressures in her heart and the only thing negative she said was that it wasn't the funnest procedure.  Most of them mentioned about the medications they were on.  One was just starting a chemotherapy drug called Cytoxin to slow down lung involvement.  She said she was nervous but no one complained.  I learned pretty quick that God gave this horrible disease to those who can handle it!!  It was such a testimony builder to me that I was not a Scleroderma patient by chance but rather I and the rest of the patients in the room was given it by choice.  I have such a love for everyone I meet who has this disease.  Nearly all mentioned they couldn't have children.  One lady in particular never had children and was also a BYU graduate who had come from New York.  One lady I sat across from after I told my spill exclaimed, "My God...I am just amazed to hear how this disease affect everyone so differently!"  And that is the truth!
I noticed that Rachel had the exact elbows as I.  One she had a bandage over which covered an ulcer.  It was crazy how different we all were and yet so much the same.  Walking in late came April.  She is so cute and full of life.  She has one awesome attitude!!  I can't believe how amazing she is doing dispite what Scleroderma is trying to do to her after she told her story.  She is a warrior.  She is brave.  She is a wonderful role model.  I am so glad I met her and that she has befriended me!
We then watched a webinar about interstital lung disease in Scleroderma patients.  It was super informative.  It talked a lot about the medication I am on now which is a drug used to treat interstitial lung disease....which I do not have but maybe I will be lucky and not get it :)  The one lady on oxygen said she literally woke up one morning and couldn't walk all but a few feet without feeling winded.  Prior to that she would walk her dog every day.  You never know when it's going to hit but it usually hits hard when it does (at least that's what I have noticed and researched).  I think we all left the webinar feeling like each day is so precious.  That's why I try to live my good days to the fullest.  Carrington was being a little noisy during the webinar so my mom had taken her out.  Bailey all of a sudden got up and left to switch my mom.  She was gone quite a while.  Then my mom came in and sat in on the rest of the discussion.  We learned a lot from each other.
Afterwards we planned the Scleroderma Walk/Run for 2015.  EVERYONE that reads this please mark your calendar for June 13, 2015 and please participate!!  It will be held at liberty park.  More details will be made as it gets closer.  PLEASE PLEASE PLEASE come!  I can't stress enough how much it would mean to me.  I don't want you to come for "me" but I want you to come for all my friends I've met and will meet who have Scleroderma.  They need the help.  They need the support.  They need the funds for a cure.  I would love all of that too but really they need it more than I do.  Utah no longer has a chapter.  That's something I want to help change.  From what I understand of the situation, patients are having a hard time attending meetings because they have become pretty debilitated.  I am doing this for them.  I am able to go, work, volunteer on their behalf so please help me out on this! THANK YOU SO MUCH!!  I will keep you all updated :)
Anyways, after the meeting as soon as the elevator door closed Bailey started bawling.  I gave her a big hug.  My mom joined in on this group hug and said Bailey had a hard time.  She said, "Britt, I had no idea.  How do you do it?  You are my hero!"  That made me start crying which made my mom cry...so ya a tender moment we had.  My mom and I quickly realized how out of the loop Bailey was.  She was so young when I was diagnosed and didn't get to be part of my diagnosis and trial stage.  The poor girl I think was a tad overwhelmed.  So...we ate away our worries, tears, and blues at the gateway for lunch at none other than the blue lemon :)  YUM!

 This was my facebook post from that day!

What a GREAT day! I am so thankful for my mom and sister for supporting me today. Although they probably had a lot better things to do than drive up to the University of Utah and be in on a webinar about interstitial lung disease in Scleroderma patients--I am so glad they were there for me! I am excited to be the newest member of the Utah Scleroderma support group. I met 5 AMAZING women who all share a common life with me...the Scleroderma life. It was a day full of mixed emotions and lots of memories flooded me (I've made lots of walks on the bridge that takes you from Primary Children's and the U of U hospital for tests, appointments, and procedures), but I have 5 more reasons to fight for a cure because of my amazing new friends! All of us have a scary battle and I'm glad we are going to battle together! I also was able to stay and help plan the 2015 Scleroderma walk. Family and Friends....PLEASE mark your calendars for June 13th for the Scleroderma walk/run held at Liberty Park!! #scleroderma #raynauds #universityofutahhospital #teal #wearefighters

#wehavehope #wewillfindacure

Born Into Heaven

Today has been what you would say as "Just One of Those Days!"  I woke up later than normal, extremely tired, unproductive, and foggy-minded.  It didn't take me long to realize what today is.  2 years ago our sweet baby was born into heaven.  It was an experience that I will never forget.  I have had a lot of healing since then but it will always be remembered.

I was ordered some blood work (for clearance) before I could be prescribed a certain medication.  They asked me if I could be pregnant and I said no.  Law is law--so blood work was ordered.  It came back positive.  I DID NOT BELIEVE IT AT ALL!!  Like 110% new it wasn't possible so I requested a quantitative.  And it also came back positive.  I was not prepared for that news one bit--in fact I sobbed and sobbed for DAYS!  I was mad because this was not in our plans and none the less I would be due during my busiest time of dance so that meant a whole semester off for me.  So many things were going through my mind.

As they say time heals and so really it didn't take too many weeks for me to start realizing that everything was going to be ok.  But on September 17th like I said our baby was born into heaven.  I remember it like it was yesterday...Cache was over to play with Kaden and I just started feeling crappy and it all went from there.  It was one of the most emotional things I have ever experienced personally.  I'm sure you can imagine the guilt I felt.  I never knew I could have so much emotional hurt.  So many feelings, emotions, what-if's were racing through my mind, heart, and soul.  I wasn't very far along but never knew how attached I could be.  It was honestly experiencing a death and I had one hell of a time grieving our loss.  At times I thought I was going crazy.

The best advice anyone gave me was from Spencer.  He said, "Maybe it's the Lord's way of saying we need to get our lives prepared and ready for another baby."  It made total sense and just felt so right.

So the next month we found out we were expecting again.  That in itself was a complete miracle.  I was originally told that due to my Scleroderma that I shouldn't have or possibly could not have kids.  I was put on infertility medication to get Cody.  After him we pretty much gave up after trying for over 3 1/2 years and then just a few months of me being in nursing school I found out I was expecting.  So getting pregnant so quickly after our loss really did reassure us that God had a plan and it was time for our sweet rainbow baby Carrington.  She was the rainbow that came after the storm (at the time we were expecting our heaven baby my life was crazy and out of order).  I am so thankful for this experience and all I learned along the way.

I was able to put my families needs first, which was something I didn't always manage well.  I learned compassion, love, forgiveness, being in tune with the spirit, forgiving of self, and so much more.

Happy heaven birthday to my sweet baby who would be about 16 months old (if earthly born).
I loved you from the moment I knew you were there.
I am so grateful for eternal families!

The things we take for granted :/

Fall is definitely in the air right now and a pretty hard time for me!

My circulation disease Raynaud's is in a little flair.  I am having spasms about 10-12 times a day in both my hands and feet.  The spasms I talk about is when the blood vessels constrict and cause my hands/feet to turn purple, dark purple, to white-- then when warmed up they turn bright red.  As this happens they hurt and sometimes feel like they are on fire (like when you are warming up from having frozen hands in the winter).  They don't burn much anymore--I am pretty desensitized to it but they do ache and become really stiff and the ends hurt.  Ulcers can develop due to lack of circulation.

I have a nice little calcium deposit that has erupted through my elbow.  Anyone out there who has had calcium deposits will tell you how painful they are!  I can't explain it well-- but pretty much like a splinter of glass cutting into you with additional nerve pain in the area.  Ouch!  I showed my Dr. on Monday and of course they say to leave them alone but I got super brave and dug it out of my elbow tonight.  My whole arms shook and literally thought I was going to pass out.  It's so hard to teach dance and tumbling when that is constantly being rubbed on so I think it will be better now that it's out.  I have one in my knee that I need to get surgically removed sometime.  I can't kneel on a certain spot on my right knee.

(couldn't get a very good picture of it...it's a deep sliver wounnd)

I also have an ulcer on the outside part of my small toe on BOTH feet.  They don't bother me much only during a spasm or when I am dancing--so I guess they do bother me a lot haha.  Wish they would heal before the weather turns too cold.

Here are a couple pictures I took tonight so you know a little about what I am trying to explain.  My toes are swollen too because of the increased dose of steroids :(

It hurts to dance with these dang toe ulcers so hoping they will heal fast.

I am kind of bummed but another thing that just started Tuesday night is dysphagia (difficulty swallowing).  Ya, I wasn't going to say anything because I thought it was just a minor thing but continued again last night and so I woke up Spencer and told him.  We said a little prayer that it will improve.  I'm sure my mom & liz will freak and be mad I haven't said anything.  It's different than when my lower esophageal sphincter was affected and I could hardly swallow any food or water.  I can still get food down--it's just that my throat muscles feel really weak so when I swallow I have to really try to swallow hard or even swallow a couple times.  My throat feels tired most of the time, such a weird feeling that I've never felt before. I need to call my Dr. on Tuesday and see what he thinks we should do.  I really don't want it to get worse and then have other things flare up.  Oh the things we take for granted!  I would be lying if I said I wasn't worrying just a tad.  Dr. Call will probably want to try me again on some kind of a calcium channel blocker called nifedipine but I just don't think I can tolerate the migraines it gives me.  Those are getting lots better :)

Tonight my bones ache and I feel chilled.

Tomorrow is BYU football so looking forward to a fun weekend with my little family!

It's the small things...

The medications I am on really are kicking my butt.  I have always been one that could run off little sleep but that has changed.  I am REALLY tired.  Like words cannot even describe how tired I am.  A few weeks ago I started with some anxiety of how I was going to start another school year and survive the 8:00am drop off time.  I seriously sleep in until 9-9:30 right now.  I just leave out cereal bowls for my boys the night before and their favorite cereal and the TV remote.  I am so proud of them for being responsible and extremely understanding.  Carrington sleeps in til 9- some mornings longer.  I stay in bed until she wakes up.  I never feel that I get enough sleep.  Anyways enough of that---so I have been desperate to find ways to help gain some energy.  Here are a few things I have faithfully done the last 4 weeks and it's beginning to help which I am so thankful for!!
*NO POP...most of you that know me probably don't believe it but yes not even one sip for a month.  First 2 weeks were hell--withdraw headaches were killer but I am now at a point where the craving or desire is not there.  My joints feel better and I have less headaches :)  I try to drink about a gallon of water a day.  I mix it up by putting fresh fruits in my water bottle.
*TAKE MEDS ON TIME...I know crazy but I have found if I am very consistent in taking my meds at the same time each day and night it makes a huge difference.  I found if I take my morning dose about 6 am (when I am up for a potty break from all the water I drink) then the drowsiness is died down by the time I get up....still sleepy (I never wake feeling well rested) but at least I don't feel zombified.   I also found if I take my nightly dose at dinner then I get really tired just before bed and I sleep more sound.  I cannot skip doses or I get insanely crazy nightmares that would make anyone cry.  I've always hated taking meds but getting more faithful and feeling some relief.
*PRAY FOR HELP...I am the type that when praying I thank more than I ask for special blessings.  I have been so desperate for help that my heart and soul has begged for help from my Heavenly Father.  I have pleaded to be able to get through the day.  My faith has increased.  I have received so much comfort from my Heavenly Father.
*GOOD FOOD...My husband will be the first to say I am a crappy eater.  I can skip breakfast and lunch EVERY single day and pig out on a huge dinner.  I know pretty horrible.  I have slowly started changing my eating habits.  I still rarely eat breakfast (except every Saturday and Sunday we eat a big breakfast as a family).  But I do have a mid morning snack.  Instead of a sugar based lunch I am obsessed with these wraps!

I am making all my eating choices to be more colorful and fresh.  My boys love them too.  We mix it up but basically lunch meat and all the vegetables from the fridge.  I've also tried something new the past couple weeks.  I've taken my kids grocery shopping with me and they each get to choose a couple fresh fruits and vegetables.  It's been fun trying new things and they feel more part of food choices and eat better :)  I also gag down the greens from it-works early afternoon.  Its disgusting to me and I have tried it an all types of juice and smoothies but it gets me hating it every time I take it BUT it makes me feel good!  Love/hate for sure.
*ESSENTIAL OILS...I am a distributor for young living and love it!  I have for over a year and always look forward to getting my monthly oils.  I also use do Terra and get them through my mom.  I could not live without deep blue (topical cream) for pain.  I have oils constantly diffusing in my kitchen/living area.  I use them on my kids daily.  I have too many favorites but purification, lavender, stress relief, and peace and calming are a few of my top picks.  I use frankincense daily which is one that can cross the blood brain barrier and detoxify.
*READING...Never in my life have I loved reading books (other than textbooks for school--I LOVE learning about science).  But novels have just not been my thing.  I always have made an excuse not to read and always saying I am too busy.  My mom though got me hooked to audiobooks on audible :)  I have read (listened) to several books this summer including:  The Birth Order, The Fault in Our Stars, Stopping Stress Before It Stops You, The Bridge to Heaven, The Hiding Place, and The Best of Me.  I just started Blackmoore by Julianne Donaldson.  I have really enjoyed these books and it's been a blessing in my life to maybe escape the tiredness, stress, or headaches for little bit each day.

So overall I feel like the past 3-4 week have been a little better and I feel a little more encouraged.  I still pray for strength and peace.

Update

It's been awhile since all the tests...
I have lots of good news!
My heart and lungs are great!  That is always the best news.
There is always a little bad....I guess so we can appreciate the good.  My MRI showed myopathy in several dime sized affected areas in my neck, shoulder,  and arm.  So in summary, the Scleroderma has affected my muscles and caused them to break down into lipid or fat cells.  Once they loose the muscle fibers they can't be replaced so what I lost is what I have lost.

The neurologist said I am going on treatment...that's exactly what Dr. Call did once we received all the labs.  I made the choice to stay away from prednisone for now.  I am on azathioprine 3 tablets a day for the next year or so.  I feel good about this choice.  I also went on 1 weeks worth of nifedipine to help with ulcers but quickly stopped that myself due to the migraines it caused.

The steroid has made me feel super tired....and I hate it!!  I could literally sleep all day.  I feel like I have the stomach flu...achy and crappy.  They tried to get me on Cymbalta which is an anti depressant that helps that crappy flu like feeling, but due to insurance reasons they wouldn't approve it. We spent all last month appealing it but no luck.

My last appointment went pretty good. I told him I went off of the nifedipine.   He explained that 90% of people that go off of it is because of headaches.   He suggested we try a new kind of antidepressant that works similar to cymbalta and would help with pain.  I am on effexor twice a day.

I don't mean for this to sound so negative but really I hate it.  I am even more tired than if I was just using the steroid.  He said to stay on it at least 5 weeks and see if my body adjusts.  I have been getting really bad headaches....I don't know if it's the heat, summer storms,  medication or what.  I decided last week to go off pop entirely.  I was a Dr pepper lover everyday if not twice a day but willing to do anything to start feeling better.  I am staying strong and enduring the caffeine withdrawl headaches.....blah!!

This week especially has been hard for me...I can blame it on the weather right??
When I feel crappy and tired strong feelings of insecurity overwhelm me.

Ok...I better end with something happy--
Tomorrow is a new day :)

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 :)