What ‘fighting for care’ really means

It has been a day. I mean it has really been a mind-boggling day. It started early this morning as my alarm clock went off and my body was in so much pain. More precisely, my lower back was broken and I was not going to be able to manage without my cane. As usual I set the heating pad on medium and laid flat on it for 10min before crawling desperately out of bed. I showered, praised the lord I didn’t have to wash my hair, made my coffee and then settled into work. Yes I work from home and this particular day I was able to to work from my couch.

At 9:30am my rheumatologist called to go over my symptoms as one theory is the entyvio/vedolizumab is causing the back pain. While there is one publication indicating as much, these patients had progressive arthritis which I seemingly do not have. Needless to say we kinda parted ways at this point. Before hanging up I let them know about my MRI of the lower back – ordered by a doctor out in Toronto who thinks I might have a compression – and she asked me about what else is going on with my health. We talked about the neuropathy symptoms and the MRI of the brain which ruled out MS. She said ‘it looks like a doctor referred you to a neurologist specifically to rule out MS and it has been, so you don’t have a queued consult anymore”. Reasonably so, I went into a tailspin because that was the one appointment I had been holding out for.

I immediately got on the phone with my GP and left a message about this supposed canceled (or completed) consult and that without a new neuropathy-specific referral we would never get to the bottom of this. My GP and I are generally on the same page about this so I was not worried he would push back.

While I was trying not to get heated, I was hammering away at work, listening to a patient story about ordering one of Invitae’s genetic tests and she said “genetics doesn’t have to be used as confirmatory it can also be used as exploratory”. Here I was, working nearly three years for one of the best diagnostic genetics companies in the WORLD, and I had not looked to see what I could utilize. I got online to Invitae.com and downloaded the requisition form for the Alnylam hTTR no-charge sponsor program which I felt was finally time to order. I emailed it to my GP and offered to do the leg work if he wouldn’t mind submitting it for me.

Hours later, anticipating my period and pushing back some oncoming muscle twitches, I decided to use one last tool in my box. I decided to text (yes this is his preferred method of contact) the doctor in Toronto who ordered me the last MRI (which is on Sunday!!!). I asked if it was possible to see a neurologist. Immediately he said YES. But what I had not realized was, he thought I was asking to see HIM. Sadly, with the pandemic and not being able to tolerate long car rides, I asked if he could refer me to a local neurologist. He said “it would take 1-3 years”, and that was that. Nearing the late afternoon I chalked the day up as a whirlwind and was hoping I’d have a callback or an email in my inbox by the morning.

Logging on to another work session, the hospital called me again. This time it wasn’t the automated appointment reminder and it wasn’t the rheumatologist. ‘Hi Ms Gandhi’ she began, “I am so sorry but we had to cancel your appointment for Feb 24th but Dr. M would like to instead see you over zoom on Jan 20th instead. I know it’s last minute”. … “That’s fine I,… sorry… what doctor is this for? I mean… what type of doctor?”. Confused was putting it lightly. “Oh this is for your neurologist”.

“I don’t have a neurologist” I said politely.

“Oh, sorry I missed that this is your first appointment with him. Is it still ok?”

Shocked and elated I of course said yes, got on my patient portal to confirm and sat in shock for about 10min. I called my GP back and spoke to a human (my favourite lovely human who always helps me out) and told her (the admin) what had happened. We agreed to put the genetic test and the pain meds on hold until we had some data to go on.

What a day.

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