first of many

This is going to be the first post of many – as I plan on sharing my journey with you.

 

My life has been an incredible adventure.  I still have much of it to explore through – I'm here to tell you I am just happy to be here.  I am also here to tell you along my journey I have learned a lot.  I am a 21 year old college student, from Ohio, and my entire life I've battled chronic health issues.  As a child and in grade school chronic ear infections, sore throats, fevers, and GI (Gastro Intestinal) problems.  In middle school the infections increased, in high school they increased more, and in college things became chronic.  Visits to numerous Pediatricians, Family Physicians, and Specialist of every kind provided the same test and the same answers over and over.  I heard over and over, “you have a weak immune system (Translation: we have no idea) – but, here is an prescription for an antibiotic.”  It was a frustrating and hopeless cycle.

 

In my second year of college I got H1N1 and it was nearly catastrophic.  My health declined significantly from there and we knew things were only getting more serious.  In the days, weeks, and months to followed I have been to the edge and back with chronic infections (often daily).  Fevers, sore throats, fevers, GI problems, fevers, muscle inflammation, fevers, joint pain, fevers, thrush, fevers, brain fog, and did I mention fevers.  We traveled from the Cleveland Clinic to University of Michigan and my health forced me to do a medical withdraw from school (thankfully I could take some classes online).  My first real hopeful clue was with a diagnosis of Celiac Disease in 2010 – immediately I went “gluten free”.  Yet, the fevers, sore throats, muscle inflammation, joint pain, and thrush continued.  Next we were told to  remove my tonsils due to symptoms of PFAPA.  Yet, fevers, muscle inflammation, joint pain and thrush continued (the only thing that stopped was my chronic sore throats).  Then, to replace the sore throats, I started to develop lung infections and asthma type symptoms – I started using a nebulizer to keep my lungs clear.  Next up “gluten free” not cutting it – I had to go on the Specific Carbohydrate Diet (SCD) outlined in the amazing 1960’s book “Breaking The Vicious Cycle” by Elaine Gottschalk.  I was now eating gluten free, grain free, sugar free, and lactose free – and for the FIRST time I started to see progress with my digestive issues.  I had new hope.  Yet, days, weeks, and months passed and digestive improvement was it.  My fevers were daily, my muscle inflammation was daily, and fatigue was exhausting.  I was miserable – but, my family did not give up.  In January of 2011 an Immunologist discovered I do not produce certain antibodies needed to fight pneumonia and flu.  After further testing I was formerly diagnosed with PIDD.  I would need IV Immunoglobulin (IVIG) treatments every month for the rest of my life to give me the antibodies I need.  TOMORROW  I will receive my first IV IG treatment and in the days, weeks, months, and years to follow I will share my journey living with PIDD.  I have learned so many things in my journey but the two most important things I have learned - is never giving up in seeking answers (and laugh along the way).  So today I begin my blog…..

If you ever have a questions or comments just message me and I will do my best to answer.  Or if you just want to share something positive, funny, or nice- please feel free to email me!

(excited!!!)