Ankylosing Spondilitis and Crohn's

Good day, I have a long history of pain...It started when I was about 28, I am now 43. I was having unbearable lower back pain, so much so that I was having my young daughter help me to do everyday functions like dressing myself and such. It took 2-3 years for a diagnosis and my family doctor had to dispute findings before finally getting somewhere. It was determined by a rheumatologist that I have Ankylosing Spondilitis. Great a diagnosis! There wasn't much they could do to help but at least I felt like someone understood for a change.

Then my family doctor got sick and had to retire...the next family doctor I got was fresh out of school and I understood he was still learning so benefit of the doubt....was that ever a mistake! He didn't believe I had any problems and wouldn't refer me to anyone else as he felt I was fine, I just had arthritis he would say; take advil and deal with it. I tried going to him with a slew of issues just to be told, Sorry only 3 topics per visit! How is a doctor to know what symptoms are related to each other if you can't tell them what is wrong?? This doctor took away my diagnosis and also took away my meds. He is now working solely as a ER doctor.

Fast forward to December 2019, my dad passed away from colon cancer at age 62 a couple years ago. I decided I should follow up and get a colonoscopy...it came back with Crohn's. Thinking back, I talked to my ex-family doctor about many issues I had been having and they were symptoms of Crohn's. So here I am now fighting 2 diseases and without my push I could have had the same fate as my dad.

I don't know where the system is failing but it is...As of now I do not have a family doctor to watch over my care, only the specialist that found Crohn's. I still can't get a referral to Rheumatology and there is no access to physiotherapy or other services to help with daily life. I have to work 50 hours a week to make ends meet and I am exhausted. There are no sick days or vacation days at my disposal. I have no one to assist in filling out paper work for tax credits to help financially. So here I am, working hard to keep going...how much longer I don't know :(