From Shari: My Medical Journey, Part One

If I can help one person learn what could be wrong and for that person to have a better doctor-patient relationship, this very long blog entry will be worth it to me. Please read this when you have 10-15 minutes. :) This is your warning. (*laughs*) 

I was a child of the late 70's. My mom was a smoker and my Dad served in Vietnam. 

My mom asked doctors about quitting smoking during her pregnancy with me, but at that time, it was thought to be more stressful for both mom and future baby (me). So she didn't. I was born 2-3 weeks early and weighed 

3 pounds, 12 ounces. 

I wasn't expected to live long; the doctors tried several methods the first 24-48 hours to save my life. The doctors talked to my parents and they were out of options, but the one left would potentially save my life and could cause a hearing loss. (It was a very strong antibiotic still used today in extreme cases.) I was in the hospital from the day I was born (July) until October and I still wasn't 5 pounds when I was sent home. 

Mom knew pretty quickly I couldn't hear well. Foods made me extremely sick and Mom expressed concerns to my doctors and she was blown off until the doctor saw proof. He then put me on a gluten-free and dairy-free diet which I stayed on until I was almost 5. My symptoms changed (remember this as you read). I no longer had massive diarrhea. (TMI, I know.) 

So, the doctor decided I had outgrown my "allergies". It was actually probably Celiac Disease and I possibly did outgrow the dairy intolerance. I also developed Leaky Gut from all the antibiotics during my lifetime so far. As a child, I also had my fair share of ear infections and bronchitis.

I started getting sinus infections in high school after I developed seasonal allergies. (I eventually learned my sinus infections were viral and I no longer take antibiotics for them.)  In 2001, my seasonal allergies started way too soon to be allergy-related. After 3 months of a headache 24/7, I finally saw a doctor who checked my blood pressure 3 times and she even used a second machine because she was convinced there was a mistake. 

My blood pressure was 153/100 and one reading was higher, but she didn't want to freak me out. She told me I had a choice: start meds immediately and she would watch me take the first dose if I was going to balk, or go to the hospital. I started meds. She had hoped regulating my blood pressure would eliminate the headache that I had. 

It didn't.

In 2006, I developed new symptoms. I was constantly bloated, fatigued, my stomach just hurt much of the time, my gums bled a lot even though I visited the dentist 3-4 times a year, I had itchy blisters on the soles, and bouts of eczema. My dental hygienist asked me to seek a full medical workup because many of my teeth didn't have much enamel left and my gums bled excessively even though I took good care of my teeth. The bloodwork came back positive for Celiac Disease and I was told to stop eating gluten. I had a biopsy several weeks later which was negative. 

My regular doctor told me going gluten-free was too difficult and she didn't recommend it just based on bloodwork. My gastroenterologist put me on Align which seemed to help a lot. I had been gluten free as a toddler and decided to try it again. It didn't seem to help though, so I eventually went off the diet. I moved to Arizona in 2007 and had numerous sinus infections. I eventually saw a neurologist who diagnosed me with migraines. I still had the headaches 24/7 and by this point, migraines at least monthly for 5-7 days. I started meds that didn't help and my neurologist was puzzled and didn't know what to do. He encouraged me to get more tests done, but I couldn't 

afford it. 

Eventually, I moved back to Indiana and started seeing my old doctor again. We were both frustrated I was still having headaches and migraines. She insisted I have a MRI which showed some potentially concerning issues, but the results didn't explain the headaches. She prescribed a new med that was my holy grail, but it was expensive and I was only allowed 9 pills per month. So I rationed them for my worst migraines.

 I continued to get sicker and wound up with Acid Reflux/GERD and went on 5 acid reflux meds a day under the care of an Asthma Specialist because I also developed asthma. I would cough until I vomited and then I would be fine. The inhalers helped immensely, but it didn't stop the episodes entirely. I still continued to have headaches 24/7. I was also sleeping a lot and it was suggested by a doctor I was depressed.

In mid-December of 2011, my neighbor visited us for Christmas and gave us candy. We enjoyed our visit and somehow we started talking about sleep apnea. He told us he was tired a lot, had headaches, and high blood pressure. Mom insisted I get tested for Sleep Apnea. My doctor was not convinced, but mom talked her into ordering a sleep study. I had to wait approximately 6 weeks for the appointment. The next morning I woke up happily at 4:30 a.m. because I didn't have a headache!!!!

 It was the 4th time in nearly 11 years that it happened. I returned home and talked mom's ear off and played with our dog for quite a while. By this point, Mom noticed my eyes even looked different and she waited all day for me to fall asleep. (I couldn't stay awake much more than 2-4 hours at a time by this point in my life.) Unfortunately, it took until May of 2012 to get my sleep machine, but once I did, the headaches went away overnight again. So, it was easy to adjust to the machine, especially when I started using a nasal mask instead of a full face mask. I got off all 10-12 meds and was finally healthy! I haven't had an asthma attack since 2012.