Sunday, June 5, 2016

About Mystyhaze21 other wise known as Leah offline.



Hi Everyone, Well I guess I'll start by sharing a bit about myself..My name is Leah, I live in the state of Idaho with my two small children. I've got a rare genetic disease known as 22 q 1.1 deletion syndrome or DiGeorge Syndrome..


Google description is as such: DiGeorge Syndrome (DGS) is a primary immunodeficiency, often but not always, characterized by cellular (T-cell) deficiency, characteristic facies, congenital heart disease and hypocalcemia. DGS is caused by abnormal formation of certain tissues during fetal development. 




 I've got twins, a boy and a girl. My daughter has it as well and was born without a pulmonary artery, coinciding collateral,V.S.D and a right aortic arch instead of a left swinging arch. She had a g-tube put in at 5 months if I remember right and a fundoplication done to put the feeding tube in. 
She had a reconstructive surgery done at 7 months and also another one done before age 2. She spent the first 8 months of her life in the hospital in Spokane Washington and Palo Alto California at the Children's hospital at Stanford. 

 For myself, I have Systemic Lupus, with a pending diagnosis of second stage MS. Also have a moderate form of AS, spinal fusion on L2 to L5 with a *45 curve that forms inward instead of a out ward curve, so I have my thoracic and some parts of my ribs fusing. 
  No, I'm not held together with duct tape or rubber bands but some days it feels like that between chronic joint, back and other pains. I've constantly having to deal with my back spasming from SI joints and having some anti-imflamitory injections from my mom who is a nurse 
that my doc has allowed to give me 
them at home so I dont have to 
constantly go into town for them when the pain is 
so bad. 

If I have any little bits of stress it flareups big time and I'm right back on steroid injections, trigger point injections and Solumedrol to kick start the med to get the joint inflammation down. I may look fine on the outside minus the Mylar rash across my face, but I'm fighting a massive amount of pain daily in the inside. So the next time you decide to open your mouth and insert nasty judgement and comments here...think about what your going to say.. 
All of you who suffer with chronic pain daily..Your all warriors...and in a never ending battle. Keep up the good fight. 
 I do have hobbies on a lighter side, I love to cook when I can, my most recent hobby is Adult coloring...it is very relaxing to color before you go to bed, it helps you unwind from a stressful day. 


I love to cook, I'm a sous chef by trade,
also love geology, meteorology, anything to do with earth science and weather. I'm a crafty mommy, like to make bracelets or little outfits for my kiddos to play dress up with. 

My youngest daughter is really into dress up and hello kitty so I kind of cater to it being a fan myself of hello kitty. I love beading, making sparkly jewelry, or embellishing little trinket boxes, water bottles, shoes or anything I can get my hands on that needs some sparkle. 
I think I've drawn little pictures and doodles on almost all the surfaces of my boxes or my pc that I could..I get called the queen of customization including my windows desktop. I love music, my favorite bands are black veil brides, five finger death punch, korn, b4mv...I listen to alot of heavy metal, rock, hard rock, symphonic metal.
 I'm pretty average as far as hobbies and likes. I've learned to adapt with some daily activities because of pain or not being able to function well as I could.

Well that's a little about me, probably seems like alot but its not as much as I could put.I'm sorry I'm not a professional writer, I probably write how I talk, atleast I try to make sure my spelling and grammer is some what corrected. 

Thank you to all that leave me comments and share my blog..Please feel free to ask questions if you have any...I dont mind I get asked them constantly about the medical issues.



Btw: I'm a huge Black veil brides fan! I love them, their music really helps me on my down days..I really love how all their fans connect as well. Fan bases is awesome! 





2 comments:

  1. Oh sweetheart, I just read this part of your blog and I always think the best way to write is as yourself, how you would talk, you don't need to be a professional writer to write something true and heartfelt ... This made my heart burst for you, I really am so sorry for what you've been dealt in terms of the health problems you have and the chronic pain is something healthy souls just do not understand and couple that with a rare condition that no one has heard of and you have a recipe for judgment and ignorance abound .... You are truly a warrior, a very admirable human being and parent too ... No one has any right to judge or put you down ... Am I right in assuming there's no cure for DiGeorge? ... I feel awful as I hadn't heard of it and I can only imagine what you go through with the Lupus also ... I have some incredibly supportive sarcoidosis buddies on my FB ... I know you don't have sarc but it doesn't mean you wouldn't be made welcome as part of our family ... You're amazing, thank you for writing this blog ... Very inspiring ... Sending you lots of love and hugs xxxxx

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    1. Thank you Gina! No there isn't its a birth defect...its genetic. My children actually have the chance of carrying it to their kids since my son and my youngest are carries. My son's twin has it as well..She may have a child with it also, if she has any or can have any. I'm going to try to inform my chidren as they get older of the possibilities they can have a child like their sister Abby or like me, or worse. Abby's condition is bad but its not the worst I've seen in medical studies and research from our doctors.She had 13 different doctors at standford and about 10 doctors durin my csection of her and her twin. I'm thinking of sharing my story on tlc's program blog called the mighty.

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