It felt like a viscous cycle.
  I went to a couple different specialist & still....nothing.  Nobody knew.  I felt at that point I was losing hope.   It would just come in waves.  I'd feel normal then BAM.  Broken out in hive light rashes/ random brusing EVERYWHERE.  Tired fatigue malaise.

I was just to focused on being a mom and wife...
At that point I was already going through mental struggles of PPD, on top of already having a bad history of mental health, I was diagnosed with Rapid-Bipolar/ Severe depression/ BPD. At the age of 14.  I had already went through tremendous amount of stress and pain my teen years. 

 I finally got to a happy place..  I finally felt I really did have a purpose for my life after meeting my best friend,  after having Laylah (4) Dougie(3) & Ayden(1)  The struggle as a young teen in the generation I was raised in, wasn't easy..  dealing with having the issues I had & being misunderstood at such a young age, really effected me a lot.

 I just feel overwhelmed at this point.  

I was then referred to a Neurologist, Dr. Kristl.  He already diagnosed me with Livedo Riticultis / Vasculitis (autoimmune disease).  The reason why my skin was turning colors.  At that point I had blood work done prior to Dr Kristls app.  He read over the results & noticed I tested Positive for "Antiproteinase PR-3"  which usually indicates a  rare disease called "Wegeners Granumatosis".

Under 200,000 people in the United States get a year.



I remember crying in the office.  I kept asking if he was sure.  He said by the blood work & EMG study that, yes it it indicated Wegener's Granulomatosis. 
I felt lost.  I felt nobody understood what I was dealing with not just mentally but physically.  It was really hard to take that in.

He then referred me to an IU Rheumatologist, who would know the right treatment.  I went a few months later & they more did blood work there.  All my blood work, again came back pretty normal.  & the pr3 test seemed to be normal too.  She told me to make an appointment with a Dermatologist & neurologist with IU, so they can repeat the EMG study, & do more tests.  Hoping that day I would hear some kind of reason for what's going on.  

I made my appointments, I couldn't be seen until Sep-Nov.  2021.  

I can't wait that long !?!??!?! 
My body is covered in blue purple yellow black brusises.  I can't even walk up our stairs with out not being able to catch my breath.  On top of it, I lost 50 lbs in the matter of 2 months.  The Dr at IU told me she can't make a diagnosis until IU's Dermatologist neurologist have seen me, meaning I can't start any type of treatment to help me..  Which I would understand if I didn't have these physical symptoms.  & blood work that indicated it.  Plus being told I have this SERIOUS deadly disease.  I don't believe Dr. Kristl would of told me that unless he knew for sure.

A few days ago I  decided to go to my local Dermatologist  He told me he thinks it may be Wegeners due to the lumps/ rash type / the brusing.  He told me I needed to go to someone who could deal with this.  That my blood work possibly is giving out negative results due to possibly being in a "limobo" stage.  At that point I broke down more.  I told him I already went to IU.  I can't get any help until I see their "Derm & neuro."

I am being thrown every which way.  Doctor to doctor.  Since being diagnosed with this rare disease, I feel like I am NOT being taken seriously.  I'm being told serious conditions I have.  Honestly I feel like nobody cares.  I understand there's a wait to get in to certain doctors, of course!!
But being told you have Wegener's & having these symptoms but I have to wait months just to get more answers or treatment. 

I feel hopeless & defeated.  Austin has had to take off so much work just bc I have days where I can hardly move.  
Sleepless nights.  Mind racing.  When I wake up I'm always soaked like I jumped in a cold pool of water.  I don't look myself.  

I just need to be seen by the right specialist & get on a treatment now rather then later.  

Please pray for ANSWERS, & guidance  through this really difficult time.  

I will post updates frequently to keep everyone up to date on where things are going next.  So far, from my understanding I won't be able to start any type of treatment until I see IU doctors in sept- nov.  In the mean time I'm going to continue trying to seek help here.  

I just want to be ok for my family.  I want to be the best mommy to my kids.  & the best wife to my best friend.  Going through this none stop chronic condition, getting tossed to different doctors..being misdiagnosed multiple times..  Makes it hard to honestly see any light at the end of the tunnel.  As a mom, that's a lot of guilt on my heart.