There are a few upsides to being disabled. This being January, in Canada, one of them is having disability insurance and not having to go outside in January to earn enough money for food and shelter. In this much pain? I shudder to think about where I’d end up. Even just not having to walk outside is a blessing now, since it’s so icy. I was out just before Christmas (and then the flu came to visit) and had an impromptu ‘Stars on Ice’ performance when trying to step up to our walk. My knee said “You’re so cute thinking this will happen,” and I tried to catch myself before I fell, and with a bit of fancy footwork, did not land in a snowbank!
Living in Canada is a blessing. With so many people in the United States in danger of losing their health care, having a genetic condition is dangerous. I’m privileged to live here. I have access to great research, good medications, adequate supply, assistance, transportation, entertainment, cleanliness, and so much more I wouldn’t have if I wasn’t in a large city in a first world country.
Being white is an asset. While I’ve had my share of ignorant comments, most doctors, nurses, and others, respect my pain and take me at my word. I’m not often called a drug seeker, and people don’t question my pain much, anymore. I mostly get pity, or people see me as brave.
Health insurance is so precious. Even though we have socialized medicine in Canada, employers sometimes provide extra insurance to cover dental, vision, medicine, and some therapy appointments, usually 10 of either physio, psychology, massage, or the like. I have coverage through my employer I’m on long term disability with, and my husband does, through his work. We are so blessed, because my medicine becomes so expensive. By February we’ve hit our $1,000.00 limit where the rest become free.
My loving family is something I can’t do without. My husband is utterly devoted, as I am to him. I can’t get over some of the things we’ve been through! Some great stories! My daughter, a teen, tries. She is kind, but busy! My son is hanging out, checking food ingredients to see if I can eat things, if they comply with my food plan! My parents are good to me, but my dad is ill, and my mom is looking after him, you know how it goes. My sister and brother-in-law are teaching English in Beijing!
Husband has a good job. This means I can have some luxuries. A heated throw. A comfy onesie. Taking a cab to appointments instead of handi-transit, buying books instead of going to the library. Buying makeup as a hobby. Netflix. Cable.
They told me I would never have kids. This was before my EDS. This was just based on the endometriosis diagnosis. I had 5 surgeries to clear out nodules and adhesions, but my doctor doesn’t believe an hysterectomy will be the answer in my situation, so here I sit. Anyway, it was 2001, six months before our wedding and the doctors were treating me for the aftermath of an ectopic pregnancy. They said,”there is no possibility of you conceiving, so try for six months, then we will start IVF.” they normally make you try for a year, so we were delighted. We would be starting IVF right after our October wedding. Well, the next month I conceived, and I was first ever months pregnant at our wedding. Our daughter was born in February, our son followed in 2004.
There’s more, my extended family, my Facebook friends, my beloved Grandmother, my real life friends, my doctors (sometimes), my favourite cousin, but I’m so tired!
So when people ask me how I can be so happy when I’m in so much pain, I consider all of the above. And I smile.