- CASE FILE
18 & want my life back! "Attended" High School via Google Hangout! Been so sick for 4 and 1/2 years! Flu masks & quarantine are my life!
ABOUT THIS CASE FILE
I am 18, earned my Eagle Scout, and just graduated from my high school that I did not attend in person! My school did Google Hangout so I could "attend" school and graduate. I've been "sick" my whole life, but did not know the true meaning of the word sick until 4 and 1/2 years ago. Before that, I had chronic sinus infections and was "sick more than usual" and had to take way too many antibiotics, but was able to live life. I had to have 4 sets of tubes, tonsils and adenoids removed when I was 2 and 1/2 and reconstructive sinus surgery at 13. I took Tae Kwon Do for years and became a 3rd degree black belt and a certified instructor. I was also a Boy Scout for years and attended school, then I got a tetanus shot in 8th grade and have had a chronic headache ever since. When I started high school, I started sleeping 22-36 hours at a time and became super sick. I had to quit Tae Kwon Do. I went to see a rare disease specialist. I was diagnosed with hypogammaglobulinemia and had sub q infusions of antibodies for a year. They didn't help my frequent infections, so the gave me the pneumovax 23 vaccine. After that shot, everything got worse. I was sleeping even more excessive amounts. I fell asleep sitting up, standing up, and even walking. I had chronic headaches and started having migraines. I constantly was picking up everything, cold, flu, bronchitis, walking pneumonia, ear infections, sinus, infections, you name it. It started taking double the antibiotics to get rid of anything I picked up. I wore a special flu mask all the time and would still get sick. My school told me that I did not have to come any more. They started doing Google Hangout so I could do school from home. I missed, homecoming, prom, and all the extracurricular activities and socialization. I felt so isolated and alone! My school gave me extended time for everything, because I would sleep for hours and miss days and even weeks of school. I always made everything up when I was awake and graduated with a 3.8. I even took college credits through dual enrollment! I have been to rare disease specialists, numerous ENTs, neurologists, immunologists, UVA, John Hopkins and even rode a train over 1000 miles one way to stay in Florida for 2 weeks to go to the Mayo clinic. I have been diagnosed, undiagnosed, redianosed and misdianosed so many times. I have tried countless medicines, treatments and procedures. Following are the medicines I have had in the last 24 months. Please note that some of them, I had them prescribed to me several different times. All of these were required even though I was homebound from school and rarely left my house except when I went to the doctors. DOXYCYCL HYC CAP 100MG, AMOXICILLIN CAP 500MG, NEO/POLY/HC SOL 1% OTIC, OFLOXACIN DRO 0.3% OP, OMEPRAZOLE CAP 10 MG, INDOMETHACIN CAP 50 MG, TIZANIDINE TAB 4 MG, RIZATRIPTAN TAB 10 MG, VERAPAMIL CAP 120 MG SR, BUDESONIDE SUS 0.5 MG/2, MUPIROCIN OIN 2%, INDOMETHACIN CAP 25 MG, PROCHLORPER TAB 10 MG, AZITHROMYCIN TAB 250 MG, AMOX/K CLAV TAB 875-125, ACETAZOLAMID TAB 125 MG , LORAZEPAM TAB 0.5 MG. I have had so many MRIs, MRAs, CT Scans and x-rays that I feel I should glow in the dark. I have had so many blood tests that I have lost count. None of the doctors I have seen can agree on what is wrong. The only thing that all of the doctors can agree on is "there is definitely something wrong" but they can not figure out what. I recently had balloon sinuplasty that has finally helped my chronic headache. Even though I have tested negative for all allergies, I continue to have "allergic reactions" to foods. The angioedema is crazy. My eyes get super red, my face swells up, my eyelids swell. It sometimes happens even when I haven't eaten anything. I did an elimination diet to test for "sensitivity and intolerance" and have a very limited diet. I earned a scholarship to my local community college and just want to be able to attend. For the longest time, I dreamed of and trained to become a Tae Kwon Do Master. I had to let go of my dream because of my health. I decided to go for a degree in Cyber-security in case we can not figure out what is going on and I can not leave my house that often. Words could never express what I feel I have missed out on and lost because of being sick. I have just been trying to live life while hoping for an answer, a treatment, a cure, a miracle.