You Don't Look Sick??

I have 2 rare and invisible illnesses, it is very rare to have 1 however to have 2 is really unbelievable.

I always felt something was wrong in my body as a teenager however, I was always told it was in my heard or I needed to gain weight, lose weight, exercise, eat healthier, exercise and see a mental health doctor.  I eventually just learned how to live in a constant persistent state of pain because it had to be in my head, right?? To find out in my late 40's that I have 2 rare conditions took an incredible toll on Me mentally especially since no doctor thought anything was wrong, After a genetic biopsy and an mri, my worst fears were concerned.  Even after the many surgeries, I am constantly told that  I don't look sick and Im too positive and smile too much to be in so much pain.  I have learned that no one can feel my pain.  Thru it all I have learned that Art Heals by giving Me the freedom to move when I cant. My smile is for Me to manifest the joy and peace that I want to have in my body and I am also learning that  "No", is a complete sentence and I no longer say or do anything that takes away my peace.

An invisible illness is a health condition that isn't outwardly visible but can limit or challenge a person in some way. 1 They include chronic medical conditions with debilitating pain and fatigue, such as myalgic encephalomyelitis (chronic fatigue syndrome), lupus, fibromyalgia, and Crohn's disease, Beals Syndrome, Chiari Malformation 1 and many others.  

Beals syndrome, also known as congenital contractural arachnodactyly (CCA) or Beals-Hecht syndrome, is an extremely rare connective tissue disorder. Estimates suggest that fewer than 1 in 10,000 people develop Beals syndrome each year. However, it's difficult to estimate its prevalence because its clinical features overlap with Marfan syndrome. 

Chiari malformation type 1 (CM-1) is a common neurological disorder that affects roughly 1 in 1,000 people symptomatically. However, the actual prevalence may be higher, as many cases are asymptomatic or only manifest in adulthood. Neuroimaging data suggests that CM-1 may affect up to 1% of the pediatric population.

·(Beals Syndrome) also known as Congenital contractural arachnodactyly  is a disorder that affects many parts of the body. People with this condition typically are tall with long limbs (dolichostenomelia) and long, slender fingers and toes (arachnodactyly). They often have permanently bent joints (contractures) that can restrict movement in their hips, knees, ankles, or elbows. People with this condition suffer from severe joint instability and chronic pain.  I was diagnosed with this rare condition at 47.  In my life I have had 16 surgeries and there are 26 medical implants in my body.  This syndrome affects my connective tissue and has affected my knees the most with 2 full knee replacements, 1 partial replacement, 2 quad tears and several years of ongoing physical therapy.  There is no cure at this moment, We live in a constant state of chronic pain. Pain relievers help some and gently stretching daily to help the muscles get stronger however there is always a fear of tearing a joint or ligament and this invisible illness has made Me very thankful for the few  good days and has allowed Me to be kinder to myself on the very painful days.  You can find out more about this condition at the link below.

https://rarediseases.org/rare-diseases/congenital-contractural-arachnodactyly/

 A Chiari malformation is a problem in which a part of the brain (the cerebellum) at the back of the skull bulges through a normal opening in the skull where it joins the spinal canal. This puts pressure on parts of the brain and spinal cord and can cause mild to severe symptoms which can lead to brain decompression surgery if symptoms become debilitating. Surgery can help however, there is no cure for Chiari.  After decades of migranes, vertigo, dizziness, passing out, blurred vision and an unsteady gait where I would fall a lot, I was diagnosed with Chiari Malformation 1 via MRI in 2016 and I had brain decompression  surgery on 7/1/2019.  After decades of migranes, vertigo, dizziness, passing out from feeling like my head was under water, blurred vision, seeing double and an unsteady gait where I would fall a lot,  I was finally diagnosed with Chiari Malformation 1 via an MRI  CHIARI MALFORMATION 1 from an MRI in 2016 however because at the time my symptons came and went and  I had to wait until July 1st, 2019 to have brain decompression surgery because it became hard to swallow even water and it was greatly affecting my mental health and my career as a Teacher.  Over the past 5 years I have had to relearn how to write, talk, think, walk and accept that I was a new and different Angela and I hard to stop looking back at the person I was and all that I lost mentally and physical.  I forget things a lot and even though I had surgery that relived some symptoms, there is No cure.  However I am living my life on purpose with no regrets and with an abundance of gratitude because thru that 5 year battle, Art found Me and saved my life both mentally and emotionally. You can find out more about this condition in the link below.

https://www.mayoclinic.org/diseases-conditions/chiari-malformation/symptoms-causes/syc-20354010