Doctors, specialists, and surgeries, oh my! Or why I have to laugh instead of cry

Many know that I've had some stupid health issues going on. It's really been doing a number on my self-esteem and my ability to cope with life in general. I decided to list everything from when the worst of it started, just to get an idea of what I had actually been through. Some minor things happened before this, but this has all happened in the last two years along with a lot of upheaval in my personal life. Putting this all down and seeing it in black and white was both shocking, depressing and uplifting all at once. It's a hell of a lot to go through in two years and, all things considered, I could be a lot worse off at this point. I am so grateful for health insurance and for the doctors that would actually listen, not to mention the people in my life who have stood by me and supported me through all of this. I couldn't have done it without you.

• July 2015 - Visited emergency room with stomach pain that at the time was believed to be related to my gall bladder and was told to see a gastrointestinal specialist.
• August - October 2015 - Massive amounts of tests with the GI specialist ending with a diagnosis of possible IBS and the definite diagnosis of a small hiatal hernia.  Given no meds and told to come back if it gets worse.  At this point I had 24/7 pain between a 3-5 as well as constant nausea and with unpredictable and uncontrollable diarrhea.
• January 2016 - Visited my primary care doctor and begged him to do something, ANYTHING, to help me.  He have me a prescription for Prilosec.  Three days later I was back to normal except for occasional pain or stomach flare ups.
• March 2016 - Diagnosed with severe anemia.  Talked with primary care doctor about switching Prilosec to a medication that was less likely to block iron.  Switched to Pepcid.
• April 2016 - First iron infusion.  Started weight loss medication.
• April 2016 - July 2016 - Hand therapy for carpal tunnel and tendonitis (again... it was my third round of hand therapy since 2012, I believe).
• June 2016 - Bunion surgery.  Intense pain response. Keloid scarring.
• August 2016 - Second iron infusion.  Hysterectomy with a bad pain response and poor recovery needing additional meds and several months more recovery than expected.
• October 2016 - Surgery to remove screws and Keloid scar from my foot.  I’ve now had plastic surgery!
• December 2016 - March 2017 - Physical therapy for my foot.
• March 2017 - May 2017 - Physical therapy for my hip and posture.  Cold laser therapy.
• March 2017 - Emergency scleral banding surgery for a prolapsed retina.  Extreme pain response and an overnight trip to the ER.
• April 2017 -  Asperger’s/high functioning autism diagnosis.  Stopped weight loss medication with a loss of over 30 lbs.  Started the muscle relaxer cyclobenzaprine.
• June 2017 - Fibromyalgia diagnosis.  Started a trial of Lyrica.

What is Autism Spectrum Disorder (ASD)?

Many people have heard of autism, but there is a lot of misunderstanding about what it actually is. Autism Spectrum Disorder (ASD) is a developmental disability that currently affects approximately 1% of the world population and about 1 in 68 children in the United States. ASD is an umbrella term that includes the previous diagnoses of autistic disorder, Asperger syndrome, PDD-NOS (pervasive developmental delay - not otherwise specified) and childhood disintegrative disorder. Boys are diagnosed with ASD at a much higher frequency than girls, although this may be due to misunderstanding of symptoms in girls therefore underdiagnosing them. ASD is a lifelong disorder. It is not something a child will “grow out of” and early intervention can greatly improve a child’s long term life experiences.

What classifies a person as having ASD is trouble with social communication and a need for repetitive behaviors. People with ASD range from being significantly impacted by their disorder to highly functioning and can range from severely mentally challenged to brilliantly gifted. No two people with ASD will show exactly the same symptoms. Only a very small percentage of people with ASD are savants.

Some things that are common in people with ASD are:
- Lack of eye contact
- Trouble relating to other people in a "normal" way
- Trouble expressing themselves, particularly emotionally or in social settings
- Fixed and repetitive behaviors
- Intense interest in a single or limited number of (often quite unique) topics
- Trouble adapting to changes in routine
- Odd speech patterns or speech delay
- Taking everything literally, trouble understanding figurative language or pretend play
- Abnormal reactions to sensory input
- Stimming (repetitive behaviors that are either self-soothing or in response to intense emotions)

Children are often diagnosed when their parents and pediatricians see that they are not reaching the same milestones other children their age should be meeting, although some children are diagnosed when they start losing skills they had already acquired. Although moderate to severe cases are often diagnosed by the age of two, many children, especially those who are less impacted by the disorder, are not diagnosed until much later. Some people are not diagnosed until they are adults.

There are many other conditions that are comorbid with ASD. Many people also have seizure disorders, sleep problems, stomach conditions, mental health issues, and sensory processing disorder to list a few. Due to autistic symptoms (like being non-verbal or processing sensory input differently) it is often hard to diagnose comorbid conditions in individuals with autism and in many cases they are written off as “part of the autism” when they are actual separate issues.

Although there is no completely established cause for ASD yet, there has been research and we are currently learning more about what might cause it. Although originally it was believed to be caused by lack of emotional connection by the mother, that is no longer believed to be a cause. It is believed that there is a genetic component to ASD. It has been shown that if a child has a sibling with ASD they are more likely to have it themselves and it does tend to run in families. It has also been shown that ASD is most likely triggered during gestation or shortly after birth. Children who are premature or low birth weight, born to older parents or to mothers who took certain drugs or had certain complications during pregnancy are more likely to develop ASD. Although there is a huge debate about a link between vaccines and autism, many large studies have been done and, as of now, the science stands firmly behind no link. The CDC is currently doing a large, ongoing study called SEED (Study to Explore Early Development) in hopes of finding out more information about the cause.

Many people are dismayed at an ASD diagnosis, but unless functioning is highly impaired and there is significant mental delay many, if not most, people diagnosed with ASD can live full lives, going to school, working, marrying and having children of their own. A diagnosis just explains why things are different with a person and allows the people around them to give them the support they need to thrive. There are many interventions and supports available to people on the spectrum today. People with ASD are just experiencing this world in a different way than the rest of the population.

Sources for details that were not already stored in my brain:
https://www.cdc.gov/ncbddd/autism/index.html
http://www.autism-society.org/what-is/facts-and-statistics/
https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd/index.shtml