Hello all and welcome to my passion blog! I have struggled with having an autoimmune disorder of my own since 16. As a junior in high school I never thought I would wake up one morning to a 102 degree fever, swollen joints, and hive outbreak for no reason. Diagnosis took 6 months, continuously being told the cause was unknown, and worse I could die if it was not figured out. Doctors became a blur, medications became stacked up. Autoimmune disorders can be invisible, or present. The only tell tale that I have is my medical ID which 90% of the time I forget to put on my wrist. Having to be labelled as DISABLED, being able to qualify for handicapped parking was not something I thought I would ever need to do. Teachers called me a liar: how convenient of me to need a 504 right when ACT was approaching. They asked if I was sure I actually needed these benefits. They looked at my disability as a benefit! I was baffled… I saw it as a fault, I saw it as a disease, I saw myself as different. Being young and naive I did not fight for my 504 disability rights. I thought that I did not need to get this assistance. Why would I need extra time if I have not needed it in the past? Why did I get extra absences, shouldn’t it be understood and excused if I am hospitalized. I have met other individuals with blind autoimmune disorders. Individuals who were also looked down upon. Told they did not need the assistance. Told that it was not real, what hurts the most is being misunderstood and not given the means to properly get education on autoimmune and its effects.

You may wonder how autoimmune disorders can be a passion… As someone who was thrown into this category it was something, I knew little about.  I had always cared about individuals with disabilities, but I never thought it would be me.  Autoimmune disorders run in families.  My sister has celiac disease, meaning she has an allergy to gluten.  My youngest sister is in the middle of diagnosis of what they currently think may be lupus.  Having them know and understand my disability is important.  A lot of people do not understand what it means to be disabled and walk around with a label that will be attached to me.  They do not know what it means to tell people about the fact you are disabled, to get told you are crazy…  the amount of times I have been called a liar is baffling.  Autoimmune disorders are very rare, less than one in 100,000 people have still’s disease.  It can tear down your joint structure and cause death if left untreated.  Many disabilities are ones that can be seen: blindness, wheelchair bound.  Many individuals do not consider mental and autoimmune issues.  With my sister and celiac disease her entire diet needed to be changed.  She had to be hospitalized and tested due to the level of pain gluten ridden food gave her.  Even if something is cooked in the same pan as something that has gluten she can be affected.  What I have and what she has is very different.  There are autoimmune disorders which can kill you, ones which have no cure.  My autoimmune disorder is brought on for no particular reason.  It ended my body due to illness and attacked when my immune system was at my lowest.  sixty-eight percent of persons in the workplace have a disability.  Many are swept under the rug or patronized once the disability is brought to the forefront.  It is frustrating in the fact that some of these disabilities are not recognized or appreciated.  It is an ongoing battle to advocate for myself and for others.  My career goal is to work in therapeutic recreation or health public relations.  I want to bring awareness to these autoimmune disorders.  To be able to advocate has meant a lot to me, I currently work with a nonverbal child.  If I was in her shoes, I do not know what I would do.  At a time, I did not believe I deserved to advocate for myself.  I did not believe I deserved or needed to use my 504 plan.  Anyone who told me otherwise was wrong in my eyes.  I wanted to stay ‘normal’.  I wanted to not be ‘disabled’.  Now, as I have grown to accept my autoimmune, I have made it a point to educate myself on others disabilities.  I love to hear stories of what people went through and how they got to where they are now.  It means a lot when individuals are open to sharing their stories with me.  I will continue to advocate for myself and share my story and what disability means to me.   

Rheumatoid Arthritis is one of the most common diseases for 40 through 60 year old’s, entering seniority.  It is an autoimmune disease, meaning it attacks the inside of your body.  This makes you more susceptible to sickness.  The sooner you are diagnosed and receive proper treatment, the faster you begin to feel ‘normal’ again.   

I personally suffer from Still’s Disease, it is Juvenile Systemic Autoimmune Arthritis.  When I was diagnosed my doctors were shocked.  Most patients with Still’s are under constant hospitalization.  However, I was only receiving the bare minimum of all of the issues that come along with the disease.  The signs of Still’s include: hives, fevers, itchy rash, insomnia, migraines, vision blurs.  I was experiencing all of these, yet not to the full extent.  I would get bad rashes and fevers that would often subside.  The part I struggled with the most was not being able to stay awake at school, but having insomnia while I slept.  My sleep schedule was drastically altered when I was diagnosed.  Many individuals do not realize that children can get arthritis as well.  In the article by the Arthritis Foundation “Kids Get Arthritis Too”, personal stories from children dealing with Juvenile Rheumatoid Arthritis.  ” I was in a lot of pain. I wanted to hide it from everyone. I didn’t want anyone to know. I didn’t want anyone to think of me as someone who is different. Now I am fighting through the pain without anyone knowing and my mom says I am the toughest person she knows. It’s a struggle, but you do get used to it”(Kids Get Arthritis Too, Abby’s Story).  The site allowed me to realize that I was not alone in my struggle with Arthritis.  I was lucky to be diagnosed later in life; I was blessed with a healthy and happy childhood.  Autoimmune diseases come from viral or bacterial infections.  It is usually unknown what the actual causes are.  It took six months to be diagnosed for my Autoimmune disease.  Doctors at first assumed I have having allergic reactions to fruit or fabric.  After multiple testing’s and constant doctor visits I was finally diagnosed with Still’s Disease.  The diagnosis, although hard to hear came with a sigh of relief; I could finally begin the treatment my body drastically needed.  

There are multiple symptoms that come along with Still’s Disease.  Most patients begin with the typical flu symptoms.  Fever, sore throat and, rashes.  As symptoms increase it is common to think of Still’s symptoms as anything from an allergic reaction to Lupus.  Once swollen joints and aching muscle symptoms come into play, rheumatic illness is usually the cause.  However, Still’s disease does not show up in blood work for Arthritis.  Although it is a form of Arthritis it is not the direct form of Rheumatoid Arthritis.  There are many complications that come along with having Still’s disease.  It can cause severe joint destruction, particularly in your wrists and hips.     Inflammation of your heart and excess fluid surrounding your lungs is also very common.  One complications I was in danger of receiving is macrophage activation syndrome.  It can cause your blood to either over clot or not clot at all.  “Age is the main risk factor for adult Still’s disease, with incidence peaking twice: once from 15 to 25 years and again from 36 to 46 years. Males and females are equally at risk”( Mayo Clinic, Adult Still’s disease).  Flare ups of Still’s happen once or twice during your life, usually between the ages of 15 to 25 or 36 to 46.  Flare ups usually occur from decrease in medication or other issues coming into play.   

Medications are constantly changing with Rheumatic diseases.  When I was first diagnosed I was put onto 60mg of Prednisone.  Prednisone is a very strong immune suppressant steroid.  Immune suppressants are very dangerous drugs, they make you highly prone to infection.  Other medications include methotrexate and a form of subcutaneous injection.  Other more common medications include forms of, Advil, Tylenol, ibuprofen. Etc.  These help with basic swelling and nausea complaints of patients.  My medication is constantly changing, this is quiet frustrating.  My body is A-typical to most patients.  While I look fine and feel decent the majority of the time, my lab work shows I am extremely ill. 

Autoimmune disorders can be vicious, taking many different forms.  They come about when our immune systems are at the lowest.  They can affect different elements of our bodies.  Bone, joint, blood, digestion.  It appears the more you learn and read about them the scarier, they become.  Autoimmune disorders were never something I personally feared or worried would be a factor in my life.  The day I got diagnosed changed my life, in a sense for the better.  Many speak negatively about autoimmune and the fact that it only causes hard.  In a sense I found out who I was through my disability.  I have come to realize what to put first, and who to put first.  I have realized I need to be my own backbone; not every person will stand up for me as an individual.  I have realized I need to fight; it is the thing I am best at.  I fight this disease, I fight doctors, I fight peers, I fight anyone who tells me I cannot accomplish a task. 

Dear Still’s Disease, 

The day you prohibited me from being a part in musical theatre I cried, the day I quit my favorite sport I screamed, the day I lost function of my joints and could not make it to the bathroom, I panicked.  When I thought about writing to you, I always thought it would be filled with hatred.  No, loathing.  You killed my life.  Made me feel like I was worthless, made me want to end it more times than I can count.  Attempted more times than I want to admit.  You made me feel small, in a world that I once felt that I could control.  Made me feel as though my time in advocation was for nothing.  I could no longer follow my dreams of being a nurse because it would make me too ill.  I could no longer stand on stage for prolonged periods of time without feeling like I would fall over.  I lost faith in my strengths, I let you become my weakness.  Everything in my being made it feel as though you controlled me.  When the odds were stacked against me you dug into my skin.  Festering, eliminating happiness that I had.  You destroyed what I thought was my everything, you have ruined relationships, friendships, and self-worth.  You made me feel as though the world was out to get me, like I was screaming where no one could hear.  Everything became a blur, and as people started filtering in and out with kind words, you filled me with remorse.  Why are they sorry for me, why do they care, who do they think they are to wish this upon themselves.  I resented my siblings for saying it did not seem bad; most of the time you were blind to them, yet very apparent to me.  I resented my parents for telling me everything would be alright, telling me I would get through this.  In my head counting how many times they were telling me this, counting how many pills it would really take.  I was on so many medications, I felt high.  So many I could barely function without them.  When I had to be taken off slowly getting the affects.  Steroid after steroids, infection after injection you filled me with.  There was a never-ending cycle to the medicine. 

Dear Stills: you made me weak.  Dear Stills: you made me feel worthless.  Dear Stills: from you I grew.  All those times you had me down on my luck I flourished, all those times I stood on the ledge I backed away.  You left my feeling helpless, but instead of falling into your grasp I fought back.  I found myself through you.  I push myself to overcome the obstacles you throw in my face.  I have never looked back at you in fear, instead I looked back in victory.  I have accomplished more than I ever thought I could.  Doctors continue to tell me no, and stand in my way, but I prevail.  I have one of the most atypical cases of Still’s disease to date more than one of my doctors has asked to perform case studies on me.  You made feel weak once, made me doubt my worth.  But now I stand over you in triumph.  I know how I can overcome your ways and continue to prove you wrong.  You have left me no choice but to grow up, you left me no choice but to suck it up.  To accept the disability label, to stick the placard to my car, to have to apply for work disability.  I had to fight every day for my rights to have a 504 plan.  You have made me feel invisible in my cause, invisible to everyone who called me a liar, invisible to the people so said I was a ‘drama queen’ in the hospital.  But I am not invisible.  You may be, but I am strong.  I make people see you.  I am no longer embarrassed of this label I once thought was a curse… disabled.  This word haunted me, it made me feel less than.  But in actuality it made me more aware of the students I was teaching.  I was able to relate to them in a way I never could.  It turned my advocation passion into a major, I realized my worth.  I realized that you could not belittle me.   

Dear Still’s, thank you.  Thank you for kicking me where it hurts.  Thank you for making me stronger.  Allowing me to realize my worth, overcome the barriers you set out for me.  Thank you for letting me be unapologetically me.  I never thought I would be grateful for something that causes me so much pain.  Something that makes me not want to have a family in fear of being passed on.  But I am more than grateful.  You came into my life and tore it apart, but through you and all my struggles I realized my true self.  I was able to come to term with this label, and to come to term with who I am as an individual.  I am proud to share my story and to advocate for myself.  To tell people of my hell that you brought me through, but to also to tell of the triumph I have overcome. 

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Welcome to my passion blog about Autoimmune Disorders

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