What it’s like being sick and young

You wake up and go to school, or work, or maybe even to see a friend… but me, I wake up to go to a doctor’s appointment. Or to stay home all day, I wake up to fight my everyday battle, to fight my pain, to fight my everyday allergic reactions. 

My name is Elliana Rogers, and I am 12 years old.  But some of you may know me as Ellie. I have Mast Cell Activation Syndrome, Dysautonomia, Adrenal Insufficiency, Auto immune and Autoinflammatory Diseases and much more.  Being 12 and being sick is really hard.  I don’t get to see friends very often.  I get hospitalized a lot, which means I don’t get to see my sister, brother, dad, my little dog Gideon and my big dog Shiloh everyday.  But they do come and visit me sometimes, well not Shiloh. 

One of the hardest parts of being sick so young is doctors don’t always take me and other kids that are sick seriously.  We go to a doctors appointment and they ask our mom or dad questions.  But we are the only ones who can tell them how we feel.  I have been sick since I was 9 years old and some doctors still don’t understand that. When doctors don’t understand rare diseases they jump to the easiest conclusions and say “it’s all in your head”, that you are “making it up”, that you are “lying”, that you want “attention”, that you “want to be sick”, that you “like not being able to leave the house”.   That you “like being on a feeding tube”.  Don’t ever let someone tell you you are “crazy”, always fight for answers. Always fight for help.  Always tell doctors how you feel, and never let anyone tell you how you feel.  And most importantly never give up

Last week I saw a doctor for the first time and she told me in was all in my head. But yesterday I had one of the best appointments I’ve ever had with one of my other doctors. My doctor told me that none of this is in my head, and he believes everything I go through. The difference in what one doctor says verses a different doctor really is amazing. My doctor sat in the room with me and encouraged me, and he actually helped me more yesterday then some other doctors I have seen in the last few years. After yesterdays appointment I have faith in doctors again. And I have faith that one day I will get better. And that some doctors really do believe us. 

When I first got sick I was loosing a lot of weight I went down to 36 pounds at 9 years old, and was having asthma attacks over and over again. I was seeing my pulmonologist every other day. And my mom took me to my family doctor and he told my mom “she’s fine, she’s just going through a phase, get off the internet stop researching and let me do my job” and my amazing mom said “if your not gonna do your job I will”.

I started having allergic reactions left and right so my pulmonologist sent me to an allergist and he did blood work. So the next day I went back to his office and he said to my mom “your daughter is dying, I don’t know what from but go to the hospital and demand to get admitted

Don’t let them turn you away”.  I was in the hospital for five days, on the third day I was diagnosed with adrenal insufficiency. And the amazing doctor at the hospital saved my life. Now every time I end up in the hospital and this attending that saved my life is on he continues to save my life from other problems, and I will forever be thankful for this doctor. Other doctors at the hospital have told me its in my head and I’m making it all up, and much more. And other doctors are amazing. Its unbelievable how some doctors believe me and try to help me and have saved my life multiple times, and others tell me I’m crazy and put my life in danger. 

Yes, I’m on a feeding tube to stay alive, and I have a tube in my chest that infuses Benadryl and saline 24/7 to keep me alive, but I’m so thankful to have some doctors that want to help me live like a normal kid. And to have a doctor be honest and say he can’t help me with my allergies cause he’s only a pain management doctor, but he will try his best to help me with the pain side of things. And he’s getting all of my doctors to sit at a table together to try to come up with a plan to try and think of a good treatment plan and to help me get better so one I day  I can leave the house and eat and even get well enough to go to college in a few years.

Even though being sick sucks, I have made some of my best friends along my journey and that’s something I’m so thankful for and to have friends that have chronic illnesses that understand everything I go through. And I’m thankful to have such a wonderful family that supports me no matter what. And a fantastic team of doctors handling my care. 

                                          Keep fighting the good fight, and never lose hope.