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.

My COVID+ Journey (so far)

I will be updating this blog entry as my situation evolves. This is mostly for the benefit of other immunocompromised or high-risk persons who are feeling anxious about COVID, pre or post infection. This is all based on my experience and every individual is different.

In this video (six minutes, I am so sorry…), I do my best to explain what my disease is and how viruses are a big deal to those living with autoimmune disease and/or receiving immunosuppressive treatment.

NOTE: This video is OLD. I am not taking my RA meds at this time due to infection.

Thank you to all who have reached out to offer help or to share your story. This has evolved from a ‘oh no! i’m high risk and have COVID’ guide to a ‘how to access help when you need it’ guide.

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Day 1 - Monday, March 28th: friend who I spent time with on Friday night tests positive for COVID. I take a test which reveals a faint positive but I am feeling okay overall and decide to sleep on it/re-test tomorrow morning.

Symptoms: slight scratchy throat - common with my disease (rheumatoid arthritis) - think nothing of it.

Day 2 - Tuesday, March 29th: I test positive for COVID. I am now convinced.

Symptoms: irritated throat, difficulty sleeping/extreme fatigue, slight sinus congestion (no runny nose), achey (many of these symptoms are part of my daily experience living with RA).

Due to my rheumatoid arthritis or “RA” (autoimmune disease affecting all joints incl. voicebox, organs, soft tissue and blood), ongoing history of neutropenia and twenty one years of immunosupressant therapy of TNF inhibitor ‘Enbrel’, I decide to seek advice from health officials.

8:59AM I have a 20min phone call with Ottawa Public Health Covid Nurse at 613-580-6744 - ontario.ca/exposed

They recommend:

• 10 day self isolation (ending April 8th, 11:59PM), to keep my daughter (showing symptoms) in iso. with me. Advise that isolation could be recommended for up to 20 days for serevely immunocompromised individuals.

• I must be symptom free and feeling better for 48 hours prior to leaving isolation. Two negative RATs must be completed, 24 hours apart, to determine whether or not virus is truly gone.

• As long as my husband and our other child do not show symptoms, they are not required to isolate.

Freaking out about the 20 day isolation thing, I decide to call my clinic to try and speak with my GP. No availability until May HOWEVER I somehow score an Urgent Care phone call appointment for 3PM (!!!).

Spoke with Dr. T who understands my situation and completely empathizes with me; prescribes Paxlovid (antiviral treatment) but unsure how to properly procure. It’s a learning curve and not widely available in Canada.

After two callbacks, the amazing Dr. T has secured it for me; says it is issued through Ottawa Hospital Clinical Assessment Centre, handled by outpatient pharmacy (also at Civic), processed and despensed to someone who can receive on my behalf as I, obviously, cannot be out in public. I am told to wait for their call and warned that it can take hours; I say, “No problem!” I am very, very grateful for their efforts and coordination.

Day 3 - Wednesday, March 30th.

Symptoms: Not sleeping well, very scratchy, dry and sore throat (voice impaired), feeling feverish with headache; would compare to a case of strep which I am very familiar with.

Alas, no call from pharmacy last night so I decide to call and check the status of the Paxlovid script. The person I spoke with is kind but tells me they 'do not issue Paxlovid'. They do confirm the existence of the order from doctor but insist I need to receive meds from the clinical assessment centre. It is not possible any other way. In this moment I realize that it was a good idea to make this call!

I call my clinic to leave a message for Dr. T about the prescription issue; they are ALL over it. This is how awesome they are in advocating for me/my treatment:

• They are actively trying to push through original order to simply have someone grab medicine for me from hospital pharmacy. (Simplist option).

• They are also working to speak with the Director of (1081 Carling) The Ottawa Hospital COVID-19 Therapeutics Centre in an effort to issue the drugs/expedite this process.

• They have also submitted a direct referal for me to be seen in person at the COVID-19 Monoclonal Antibody Infusion Clinic.

Concurrantly, my husband books me an apt. at the Moodie Covid-19 Care and Assessment Clinic for 10:30AM. I do not feel comfortable going out in public COVID+ but this feels like the only way to access treatment.

My clinic calls back to say, “Cancel the Moodie apt. They do not issue Paxlovid!” So, I need to be seen at the Ottawa Hospital Clinical Assessment Centre because they do. I explain that I’d tried calling them a few times (yesterday and today) but am informed that I cannot book my own apt. as a patient. It must be done through health clinic/doc office, so they’re trying to get me an apt as soon as possible.

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Update: I had to go to bed around 12PM and slept for two hours. I woke with worsening symptoms. Lots of pressure in my sinuses, dizziness and now it is audibly affecting my breathing (no chest pains at this time so no cause for alarm), etc.

The Assessment Centre did not call. My husband decided to follow up 10 minutes before they close and was told to try calling again tomorrow when they open. So that is the current plan.

The breathing ‘noise’ freaked me out as there are pulmonary complications with my disease (co-morbidities which you can learn more about HERE) so I decided to call Public Health to speak with a COVID care nurse. I called at 4:37PM and they stop answering calls at 4:30PM.

It was suggested (by one of you!) that I should try calling Telehealth for some guidance about the breathing thing (which is scary). I was able to speak with a nurse but not in a meaningful way. I actually didn’t get to ask the only question I called for due to the “Answer yes or no to the following” structure of our call which ended with a blunt, “Call your doctor.” The question I was hoping to have answered was: “Considering my disease, neutropenia and immunosuppressive medicine, what should I be on alert for throughout the night as my symptoms now involve my lungs? When should I consider going to the ER?”

6:51PM - I called my clinic back to ask if there were any updates on my file. Was told to call back tomorrow between 1-3PM; confirmed Paxlovid script was faxed to Covid Treatment Centre @ 13:30 - it will be pending and processing until tomorrow

Even mentioning an ER visit tends to rustle jimmies. My system is not healthy and requires intense medical interventions, preferably before irreversible harm is done. I know that I look healthy but I am not. ER visits are not taken lightly by me and the judgement is ill informed.

I’m going to take tylenol, continue to stay hydrated and do my best to sleep through the next few hours before hopefully being seen at the hospital assessment place so I can have antiviral meds to stop this infection before it does permanent damage.

The longer I remain COVID+, the longer I am unable to take my arthritis meds which are the only things keeping me walking/active. I am waiting on two seperate ortho surgeries (foot and hip) which have yet to be scheduled because Ontario’s healthcare system is preserving resources for COVID patients. I can’t access the meds prescribed to me (yesterday) even though I now have COVID.
Make it make sense!!

Day 4 - Thursday, March 31st.

Symptoms: sore, scratchy throat (voice impacted), intense sinus pressure with minor runny nose, itchy lungs, coughing, audible breathing (no chest pain or significant pressure), very dizzy, fatigue.

My son (7 & fully vaxxed) woke us up complaining of chest congestion & issues breathing. He had pneumonia as a baby so I was eager to swab him. His test was negative.

8:05AM - My husband calls the Ottawa Hospital Clinical Assessment Centre to check on the status of my referral. We learn that it is still in triage and are told to call back tomorrow. Tomorrow is Day 5 for me. To be effective, Paxlovid must be started within 5 days of symptom onset.

1:06PM - My clinic calls to check on me (so nice) and to let me know that they, too, called the Assessment Ctr. to check the status of my referral and were told the same (still processing/in triage). So, maybe I will have access to antivirals tomorrow. Maybe I won’t. The clinic did answer my ‘when to go to the ER’ quesiton that I never got to ask Telehealth: if experiencing chest pain or feeling extremely winded.

8:06PM - Just got off the phone with an infectious diseases (yay! rheumatoid arthritis!) physician who is going to help me get this sorted. We had a really nice chat and I am still in awe of how wonderful some people can be. Many have reached out to hear my story and to offer help. I truly appreciate it. I will keep you posted!

In the meanwhile… some light reading from The Ottawa Citizen?

Day 5 - Friday, April 1st.

Symptoms: constant pressure in head/sinus, headache (managed by Tylenol), fatigue (still not sleeping well), chest congestion, dizziness is ramping up, breathing raspy (no chest pain, no cause for alarm), feeling flush (no fever), digestive issues (yes, those ones, neat).

Woke up to an article from CBC featuring my story. Never have I been so acutely aware of my privilidge. As I shared to Twitter,

Lots of you have been trying very hard to help me access antivirals (prescribed Tuesday). Today is my last day for them to be effective. I am cautiously optimistic that I will get them. It happened because I’m privileged to be loud for those in helpful positions to hear. Thank you for hearing my story (so far) & for showing your hearts to those living with disability. Removing barriers is possible when we listen and act together.

8:22AM - I call the Ottawa Hospital Clinical Assessment Centre to check the status of my referral/access to Paxlovid. I am told that my file is still processing. They are going to look into this for me.

9:14AM - I’m contacted from the Assseement Centre and told the order is in for me to receive antiviral drugs and that the pharmacy will courrier the meds to my door. They should arrive by this afternoon. If not, call back (and given direct call-back number).

11:39AM - Received a call from pharmacist with the Civic (they don’t usually call people but wanted to expedite this process in getting me Paxlovid). Very friendly. Very thorough. Again, I am assured antivirals are coming today.

12:30PM - The Paxlovid is here and as of 12:45PM I have had my first dose.

Day 6 - Saturday, April 2nd.

Symptoms: headache, stiffness, sinus pressure draining, congestion lessening, irritated throat, feel warm (no fever), loss of taste and smell.

Day 7 - Sunday, April 3rd.

Symptoms: headache, stiffness (esp. neck), less chest congestion (coughing still but it is “loose”), continued loss of taste and smell, low energy, pain in joints and muscles (but I believe this to be rheumatoid arthritis flaring up).

Day 8 - Monday, April 4th.

Symptoms: fatigue, cough is clearing (very loose), still no taste or smell, body aches (could be the RA).

I sound like myself again, my voice is no longer impacted and my irritated throat is back to normal. My headaches are waning as are most other symptoms. The loss of taste and smell was a late addition to the symptoms list and could have more to do with the Paxlovid? I can’t be sure but WOW, I can taste the pills. I am not complaining! I’ve been on drugs for thirty four+ years, I think I can hack it. I am half way through my antiviral course and since I’ve described everything else in this blog, I might as well describe what I feel while taking them:

• Within minutes of taking the pills (two pink, one white) I feel a rush of energy and a ‘drain’ on my sinuses (like someone unplugged the bath). I have not experienced any adverse effects, aside from the intense ‘pill’ taste which has either dominated my pallate (which is why I can’t taste or smell anything else), or perhaps that’s just a late blooming COVID thing. I know it sounds weird to be like, “I can’t taste or smell stuff EXCEPT the drugs!” but that is what I’m experiencing.

I tested myself after lunch today and a very faint positive was the result. I am slowly but surely getting over COVID. Yay!

Day 9 - Tuesday, April 5th.

Symptoms: head clear & chest almost clear of congestion (still coughing up “loose” juice), stiffness remains and I am 99% sure it is my RA, taste and smell still impacted, experiencing more digestive issues (diarrhea… which is maybe a sign the virus is looking for it’s exit?).

Two doses of Paxlovid remain. I will do another RAT tomorrow (Day 9) as the current provincial isolation rules note a 10 Day Isolation (quarantine) for immunocompromised people, which I believe is only 5 for the general public at this time (cause for some confusion).

I will have to test Negative two separate times, 24 hours apart, to be considered fit to leave iso.

Day 10 - Wednesday, April 6th.

Symptoms: low energy, aches, feeling warm (no fever), minor digestive issues, taste and smell still impaired.

Today at 7:42AM I tested negative! Yes! My seven year old, however, has just tested positive. He had pneumonia as a baby so we will be watching him closely as he navigates the next few days. Overall, he is a healthy kid and I expect he’ll do just fine.

CBC featured my story on the National last night.

Day 11 - Thursday, April 7th.

I tested negative yesterday but the symptoms are lingering. For example: my coughing is INTENSE this morning. Worse than it had been the last few days of +. Very itchy lungs; not satisfied with a couple coughs. It’s nasty.

Do I resume my Enbrel now that I’m testing negative? My brain says, “No! Are you kidding? I’m just trying to heal you & you want to gut-punch the immune system with drugs?” but my body is screaming, “Everything hurts! Irreparable damage is happening! **Range of motion is at stake!”

These thoughts create brain clutter which sometimes manifests as anxiety. I work through anxiety with exercise (on good days, when I can move without too much pain), but have been prescribed anti-anx. meds in the past which were very helpful. Anxiety is a co-morbidity of RA.

**Range of motion in terms of rheumatoid arthritis damage refers to the ability to “bend” any joint. This is as far as my wrist will go. Craning beyond this range will break my wrist. You lose joint function with RA & the degeneration of 34 years equals one very sore Amy.

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(The text that follows was written when I originally started keeping this diary on Wednesday, March 30th. If you are looking for updates, they will be directly above this text.)

I do not know how long this infection will last. I do not know how severe things will get. I do know that I am COVID+. I am contageous. I don't feel good about going into a hospital knowing this. I also recognize that I am priviliged to have this help and these options.

I am high risk. I have received four vaccines (Pfizer x 3, Moderna x 1). I am cautious but this strain found me. I am lucky that, three days in, I am doing as well as I am (or seem to be; I’m on all the tylenol).

When the pandemic first began (pre-vaccines) I was terrified of getting infected. When you have no natural defence (a functioning immune system), you just don’t stand a chance. I trust in the science and feel very, very lucky to have so many health authorities batting for me. The window to receive Paxlovid treatment is within 5 days of symptomatic infection. I am still only on Day 3 so while I do have time, I am also feeling heightened anxiety about what happens next.

I know that a few of you follow me/my blog because you have an autoimmune disease, are on immunosuppressants or care about/for someone who is high risk. While I didn’t seek out this infection, it did find me so I would like to be open with you during this time in hopes that it helps you with your general anxiety pre-during-post potential infection.

I’m no longer affraid but I am certainly in awe of how many hoops there are for people like me (sick) to jump through during this time.

Thank you healthcare workers! Your efforts are appreciated now and always by me and my family.

Rink of Dreams: Nope.

Excited to take the kids skating on the Rink of Dreams at Ottawa’s City Hall, we reserved our spot online no problem and arrived at our check in time promptly. 

It’s just me who skates, my husband doesn’t. Our daughter who is 4 is learning, and our son, 7, has a pretty good form but also needs help from time to time. As I wait for a total hip replacement and foot fusion, in spite of my constant pain, I do my best to stay active. 

We gear up and get on the ice with our new chariot stroller. We go right to the middle so as to not be in anyones way. When my husband arrives to drop off my daughters gloves (he was parking), we make our way over to the boards to grab them from him. 

This is when I was approached by someone tending the rink. He informs me that I am not allowed on the ice with my stroller. I explained that it is for my youngest (who mostly is not skating; she was in it at the time) and I also use it as a mobility aid to which he says wheelchairs are permitted. I explained that while signing up, I read the rules and they indicated that strollers are permitted so long as the wheels are clean. 

This stroller is brand new. I bought it for this purpose: to skate with the kids.

I agree to leave. We had been on the “Rink of Dreams” for less than five minutes.

While taking off our skates, the rink attendant again approaches me and apologizes. He says he was mistaken and that we are allowed on the rink.

By this point, I am exhausted and fatigued. I am mentally checked out. We are done. My son is crying. It is a stressful time (for many reasons) and tonight was a Rink of Shit.

Hip Surgery Needed

January 15, 2020 I meet with THE hip surgeon. He’s the best in town and does pediatric cases (this simply means cases in people who are young-ish). He tells me that I will require a total hip replacement in my right and we could try a partial in my left but to call in 2 to 10 years (approx.); as soon as my quality of life declines.

Well, almost two years to the day, I called to get in the surgical cue. I know that things are being cancelled or postponed right now due to the pandemic and the strain on our provincial health care system. I simply wanted to get things in order and be on his radar. I am in a great deal of pain and haven’t slept in a long time because laying down causes the pain to spike.

I am doing my best to stay active, which kinda makes the pain worse but I know that if I don’t keep moving, I will lose the ability to move. Period. So I have to kinda continue the cycle of pain - activity - pain - activity - pain because I work, have kids, would like to carry on as normally as possible. Just bought one of those chariot style strollers so that I can stay active. It holds more cargo (and children) than a walker and I’m not needing my wheelchair yet.

This morning I phone the Ortho unit at the hospital and was told to call my surgeon’s office. So I called them and was informed that I need Ortho to ‘assign papers for surgery’ to me. Called Ortho unit back and was put on hold, then told that they don’t really know how to help me at this time and that I should try calling again next week for more information.

The hope in being heard by my care team is all I have keeping me from breaking.

I am trying my best to stay active. I am trying my best to keep smiling. This is not a life saving surgery. I am privileged to have doctors, to not be in a terminal-care-related situation and to be able to work from home.

No one knows when the government is going to actually help out our underappreciated healthcare workers who have been struggling for a long time (before the pandemic, even). These people need to be heard, supported and paid.

This is where we are at in Ontario:

Ontario Temporarily Moving to Modified Step Two of the Roadmap to Reopen - January 03, 2022 - from the Office of the Premier: In addition, on January 5, 2022 the Chief Medical Officer of Health will reinstate Directive 2 for hospitals and regulated health professionals, instructing hospitals to pause all non-emergent and non-urgent surgeries and procedures in order to preserve critical care and human resource capacity.

Ontario tells hospitals to stop non-urgent surgeries, procedures to preserve critical-care capacity - January 05, 2022 - from CBC News, Muriel Draaisma:

In the directive — issued to "regulated health professionals or persons who operate a group practice of regulated health professionals" — Moore says the following steps are required immediately:

• "All non-emergent or non-urgent surgeries and procedures should be ceased. Emergent and urgent surgeries should continue, in an effort to reduce and prevent patient morbidity and mortality.

• All non-emergent or non-urgent diagnostic imaging and ambulatory clinical activity should be ceased, unless directly related to the provision of emergent or urgent surgeries and procedures or to pain management services."

And Just Like That... Woke with Jokes?

I was diagnosed with ‘Old Lady Disease’, as Sex and the City’s Carrie Bradshaw (played by Sarah Jessica Parker) calls it, when I was a baby. Eighteen months old. I’ve been dealing with this ignorance for too long and it’s time for the world to wake up.

I’m cringe watching the HBO revival series, And Just Like That… as a former SATC fan. I know that all language can be problematic and, working in media, I get that there are bigger things happening in the world to get upset over.

When you have a captive audience - don’t do further harm towards a disadvantaged group while preaching ‘wokeness’.

Would Carrie have said that in episode one to her coworker who uses a chair? Would the writers or SJP herself say, ‘too bad about that old lady disease’ to a toddler on chemo puking their guts out to salvage tissue? I doubt it.

Below is a Twitter thread that I posted while catching up on the ‘Tragically Hip’ episode. I had to pause it to react, in the moment, on social media (as one does)… Let it be known that I am, at age thirty five, currently waiting on double hip replacement surgeries and a joint fusion/corrective surgery on my right foot. I had my left done at age seventeen.

“It’s arthritis, right? I have OLD LADY DISEASE in my back?” - Carrie Bradshaw on S1 E5 of And Just Like That…

@HBO @AndJustLikeThat do you have disabled people on staff? This language is hugely upsetting. I was diagnosed with RA as an infant, Hi!

This was one of my many, many intravenous drugs. Chemotherapy is a popular method of treatment to fight Rheumatoid Arthritis.

When you spend a significant chunk of your childhood in hospitals, you become well acquainted with the playroom!

Splints on my wrists were intended to keep my joints from deforming as I grew. I know they didn’t stop my range of motion from deteriorating. I have some deformities now as an adult, so I’m not convinced splinting works.

Juvenile (Idiopathic) Rheumatoid Arthritis patient (me) pushing my IV while out for a stroll in hospital. Ever try to get dressed when you’re attached to a pole? It’s not easy.

Carrie’s comments aren’t problematic to those who haven’t lived my life. Between chemotherapy, surgery, wheelchairs & chronic pain/fatigue, I also got heavily bullied for having OLD LADY disease.

Children get arthritis too.

You can’t take back those comments. They’re out there and echoed and echoed and echoed, reaching the ears of children who are very sick and tired and fading… More disabled people in media, please. PLEASE. I volunteer. I will consult with anyone (serious), for free, RE: ableism.

My whole life (like, til death) involves arthritis. It would be nice for people to accept that it’s not an OLD PERSON DISEASE. It’s rare in kids but it happens. I work in media & I want more representation NOW.

Note the swelling in my knees.

Using a wheelchair helps save energy and tissue damage. It also is helpful when I can’t walk.

My splints didn’t stop me from making the most of things!

At 35, I still use my wheelchair when I have tough days.

Arthritis has many forms. How anyone chooses to imitate, accept, react to any of its forms as they present personally or in someone close is fully up to that person. I’m not telling you how you should address the disease or it’s symptoms - I’m simply asking that you consider this diseases devastation to kids who already feel misunderstood, misrepresented and or ignored.

Here are some other things I’ve posted to educate people about autoimmune diseases and the misconceptions that create barriers in our lives:

• That time I wasn’t believed when I asked for help at a popular Ottawa festival.

• That time my disease started attacking my blood.

• How arthritis affects my livelihood and career.

• The COVID-19 risk for autoimmune persons.