If I had to draw a map of my health journey so far it'd look like this:
GP -> Gastroenterologist -> Gynecologist -> Rheumatologist -> Dermatologist -> Allergist -> Neurologist -> PT -> Counselor -> Urologist -> Cardiologist
If I had to write out a timeline of my health journey so far, I'll keep it to just since last summer, it'd look like this:
June 2018 - Pain was so severe I had a robotic laparoscopic hysterectomy leaving my ovaries (4 months after my hospital bed rest and emergency c section).
Fall 2018 - My cramping went away, but other symptoms started increasing and were getting debilitating. In November my aunt finally encouraged me to make an appointment with a rheumatologist or autoimmune specialist because it can take so long to get one and I could always cancel if I didn't need it.
January 2019 - Finally investigated what doctors are in my area and who I could go to. I got a referral to rheumatologist here, but never heard from them or received any calls back.
February 2019 - Sister in law finally got through and found out they weren't taking new patients, but never let my OBGYN know or let me know. My cramping pain returned. Called and made appointment for Dallas rheumatologist (thanks to sister in law referral from her job), but it'd be another 2 month wait while I was hurting.
March 2018 - Went to GP to see what he could do or about trying any medicine for the pain while I wait. He referred me to a pain specialist because he was unable to help or prescribe anything. Unfortunately the pain specialist were too full with patients they couldn't tell me when they'd be able to get in.
April 19th - Dallas Rheumatologist (EDS diagnosis)
April 25th - GP here
May 3rd - Dallas Rheumatologist
May 14th - Dallas Dermatologist
May 16th - Dallas Allergist
May 22nd - Dallas Neurologist
May 23rd - PT here
May 28th - Counselor here
May 28th - PT here
May 30th - GP here
May 31st - Dallas Allergist, MRI Scan
June 5th - Neurologist
June 7th - PT here
June 17th - Dallas Pain Specialist
June 18th - Counselor here
June 19th - PT here
June 24 - PT here
June 25th - Pain specialist here
June 25th - PT here
July 2nd - Counselor here
July 3rd - Dallas Urologist
July 5th - Dallas Cardiologist
July 8th - PT here
Even bad doctors or experiences led to things in my path and gave me direction. Little did I know when I first sought out a rheumatologist, that for EDS especially, you don't just need one doctor or specialist, but a whole team. There's so much affected and it encompasses multi-systems. Because there isn't a cure, treatment of symptoms is the best course of action for overcoming chronic pain.
So if you are just starting out on figuring out some health issues, even if you have had the issues for years and years or since you were a child, don't lose hope. Every symptom, misdiagnosis, pain, medicine, appointment, surgery is a piece to the puzzle. Your puzzle. And there is a doctor (or doctors if you have EDS) that are willing to help put those pieces together to make you whole.
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