12 Days post op: mtp fusion and ankle debridement

Hello,

I had surgery on Thursday, January 9th at the Ottawa Hospital (General) to address some long-standing issues relating to my disease (diagnosed in ‘88 w/JIA: juvenile idiopathic arthritis previously known as JRA: juvenile rheumatoid arthritis). The surgery was a success and I am forever grateful to have a capable and compassionate care team.

I’m often told ‘woah, that doctor is the BEST in the city/province/country/world’ and it’s true. My surgeons are next-level and as my most recent contributor-to-such-accolades (anesthetist) informed me, it’s because I’m a complex case. I have been through the wringer from diagnosis to now. It has destroyed my body and the best of the best have the skills to help me. As I said to her, “If you’re gonna be sick, you’d better do it right!”

It’s 12 days post-op (I think?) and I feel very rough. The TL;DR of my disease is that I have an immune system that is designed to kill itself. As such, I get very sick (even with common, non-serious viral infections). While trying to recover from the double procedure (toe fusion + debridement of ankle), I caught a bug. Last night I had a fever just under 104 and it was awful. Fever broke before 10PM and I was able to get back to baseline by this morning.

Trying to heal physical wounds while also battling autoimmune disease (without the aid of arthritis meds/can’t take ‘em due to infection risk which complicates surgery/recovery) AND a viral infection; why do I always feel the need to do everything at the same time, all the time? I’m exhausted.

Exhausted, but on the mend.

I expect to be in good health by Friday to attend my first post-op appointment. This is when I’ll have my stitches removed and should be able to start weight-bearing on my operative foot. I will be unable to drive (pedal foot in air cast) until late February and may have to adjust my fitness goals! I was hoping to be back in shape by spring but fall may be the new goal post.

Here is the before and after photo of my foot (not photographed is the second wound where a large bony growth was removed from my ankle):

As you may be able to see, I had my left MTP fusion done previously (age 17, missed gr. 12 finals which ended my highschool experience). I look forward to improved function, less pain and better overall health. I share this stuff with those who choose to read about it/follow me because I want to provide real, garnered-through-lived-experience hope to kids and/or parents/guardians of kids with physical disabilities. It hurts. It’s painful. It’s a grind. Don’t give up. Keep going. Like I said before, “If you’re gonna be sick, you’d better do it right.”

2024: That’s a wrap

Time to ring in the new year by having more surgery! You may recall me having my hip replaced in May (2023) and how it changed my life for the better… I got into fitness, big time, and have reached new heights in terms of capability, health, you name it. The sky finally became the limit - until I was taken out by a mysterious injury.

Rock radio announcer calls orthopaedic surgeons at The Ottawa Hospital the true rock stars, published October 2023.

It was a few days before we moved out of our Hintonburg house when I experienced a very intense, searing pain in my right ankle accompanied by swelling. I came home from work, sat down to take off my sneakers and BAM - I was out. I had to keep going though; we were moving. We have two kids who were about to be on summer break. I also work full time. ‘Not moving’ is not an option, no matter how much it hurts. This happened June 21st (2024). Some relief came within a few days when I felt (and saw) my tendons ‘pop’ and ‘snap’ near my ankle after forcing it to bend. It was later revealed through examination (by three doctors), ultrasound and MRI technology that I had some bony spurs growing along the back of my right ankle. They have likely been growing for decades but had become so large, they were now forcing my tendons out of place. The relief I felt came only after my tendons began to stretch to accomodate the new bones.

For someone who’s literally never been IN GREAT PHYSICAL SHAPE until this year, I can tell you that it friggin’ sucks falling OUT of shape. I had to change my routine from walking/weight bearing activities to doing a lot on the floor. The cool news is that I now have a pretty strong core - but the crappy news is that I am struggling due to this injury. To anyone reading this who has fallen out of shape; IT SUCKS SO MUCH both mentally and physically.

Per usual, though, there is hope. The light at the end of this tunnel is coming on January 9th; six months post injury, I will be having my bone spurs evicted (debridement) and right toe corrected (fused) at the Ottawa Hospital.

What went from a curious new ailment to ‘we know exactly what that is and how to deal with it” proves that we have world class doctors at home in Ottawa. I have been disabled since 1988 and have, over the years, been very lucky to have assembled a care-team of geniuses with heart. I don’t have surgery because I’m asking for it; I have surgery because my body will not function without it. Surgery is the last resort.

That said… 2025 is going to be brighter. I get to experience getting back into shape. What feels like a mountain to climb ris my focus. Falling out of shape for 6 months has inspired me to get back into it in 6 months, so let’s aim to catch up in June: a year post injury? Watch this blog space for progress reports.

You can also follow along on my instagram account. That’s where I’ll be sharing updates more frequently.

Reminder: I am not a fan of social media and I do not have a Facebook page/profile, nor any presence on Twitter/X. I am not very active on LinkedIn. Instagram remains the only spot where you can follow me: @amyvolume.

Almonte, here we come!

It is with GREAT pleasure that I’m able to share the news that we have FOUND a house! One where the kids can have their own rooms (and at 9 and 7, that’s a huge deal). We have a much larger yard (with a pool) and more family-friendly outside spaces to play and gather with friends. Speaking of gathering with friends, the basement has a pool table and bar! It’s accessible for people like me (physically disabled) and will certainly be our forever home.

We are leaving Ottawa and moving to Almonte over the next few weeks. Close friends who want to help us with the move or unpacking (or christening of the pool/bar/whatever), please get in touch with either Ryan or myself. Any help would be very appreciated!

This process has been very mentally draining and all consuming (and financially nightmarish)! I am so relieved to finally have a little slice of home (the valley) while still being very close to the place I’ve called home (Ottawa) for the last two decades.

10 Days Left in hintonburg, ottawa

We have sold our house in Hintonburg and are looking to move a bit further west of downtown. We have to be out in 10 days (!!!) and have yet to find a home. Just a bit stressful… looking for a four bedroom (or 3+ den or similar), an oversized garage that has an accessible main level.

Working within our budget has proven difficult although it feels almost like more of a ‘timing’ thing; we’ve bid and lost on two houses now (Kanata and Stittsville) and I’m definitely not handling the situation very well. It has been draining in many ways.

Here’s hoping I have a more positive update soon!

I wrote this blog to address the ‘flyers’ situation in the Fairwinds (Huntmar/near the CTC) neighbourhood: they are real. My husband handed them out in an effort to find our dream home. Looks like we’ll be moving out of Ottawa indefinitely. Hoping to be back in time for the kids to start school.

We are working with a (new) realtor. We are hoping to stay under $850k. We are looking to be west-of-Ottawa or in the far west end.

If you see a place that might work for us, please be in touch!

Amy’s Birthday Wish: 2024 edition

When you're young, it's tough having to miss out on parties, school events, holiday gatherings with friends and family because you're sick. I do have fond memories from 5 West thanks to the wonderful DISTRACTIONS that came in the form of sticker books, arts & crafts, board games, movies, toys, blankets and more.

Leaving your hospital bed for the playroom, or having people bring toys and games to you on days when you can't move really allows you to 'feel like a kid'. It's a magical feeling; one that helps remind us that smiling and laughing is good for the soul!

I'm turning 38 on April 25th, and just like every year since launching this birthday campaign, I'm dreaming BIG and asking you to celebrate with me by creating magical moments for CHEO Kids.

100% of your financial donation is going to CHEO's Child Life Department. They will buy the toys, craft kits and other entertainment goods and hand them over to children receiving in-patient treatment at the Children's Hospital of Eastern Ontario.

CTV News Story on CHEO’s Child Life program.

Thank you in advance for all that you do to bring sunshine to those living in darkness.