Autoimmune Blues

A healthy immune system fights viruses. An autoimmune disease uses the immune system to fight itself. I’ve been living with this since 1988; born in 1986. Maybe I was born this way? I don’t get too hung up on the ‘why me’ stuff, I just like to provide context.

I’ve been sick a long time. When your system actively fights itself, it doesn’t know about viruses ‘sneaking in’. It often becomes so fatigued due to the constant cellular battle that sometimes the body, aka ‘me’, doesn’t even truly know if it has a virus (or if this is just another day in the life).

The medicine used to treat my disease (rheumatoid arthritis; polyarticular JRA/IRA) quiets the immune response. This means my immune system ‘chills out’ and stops harming itself. It also means that it’s got it’s hands behind it’s back when the viruses present.

To combat heavy viral loads/flu season, I am often advised by docs to stop my medicine. This resurrects my immune system’s ability to fight the bad guys. Of course, it also starts fighting the good guys (joints, blood, soft tissue/organs) because autoimmune disease gonna autoimmune disease. If I want to win the fight, I have to stay off my meds until I believe the virus has cleared; no matter the pain nor damage done to my healthy cells.

Keep going.

This is my life and it is a shared experience. I am not alone, which is why I write about stuff. Some people find comfort in feeling understood or seen. Since the early days of being a test patient in child drug trials through teenage joint replacement surgery, I will always raise my hand to help find ‘the next helpful thing’ even when it hurts. A lot of things fail. Very few work. It’s important to keep going.

The amount of times I have to literally say, “If I didn’t push myself, I would not get out of bed in the morning” is up there.

Why don’t you stay home?

Why don’t you rest?

Why do you keep pushing yourself?

IF I DIDN’T PUSH MYSELF, I WOULD NOT GET OUT OF BED.

I would not find strength.

I would not be able to keep going.

I have to keep going.

Flawed theory

I did take one day to work from home quasi-recently. Fatigue got the best of me and I could not push myself to get out of bed. Well... I could and I did but in doing so, I was able to plan a day to not have to. I planned a day of strategic sleep.

I have been battling a virus, diagnosed as a potential sinus or serious upper respiratory (maybe COVID) infection, in the fall. It takes my system a very long time to recover from infections. Infections are very serious to me; they are no threat to other healthy individuals. I wear a mask at work/in public spaces when I am feeling off.

Sleep helps.

But sleep is not enough. There is a new plan (from my doctor). Some of it involves eliminating things from my diet because, yes, I am having infectious responses to the things that I eat/drink now. This is how messed up my immune system is. Latest blood work indicates a serious infection and system fatigue (no shit!):

WBC Neutrophils at 0.5

White Blood Cell Count 2.4

Keep going.

I work full time. I’m married. We’ve got two active, social kids. I own/operate a seasonal business.

I’m tired.

I’m sick.

I have to keep going.

Hey, 2026!

After being a Social Media ghost for the last few months* I have been slowly getting back online. What I missed was the real connection with many of you. Why I went away was because of the overexposure I was feeling. When it comes to Social Media, always remember that YOU are in control of what you choose to share but also be aware that when you DO share stuff, it can be repurposed by people with shady intentions**.

If you’re ever looking to connect with me, please always make THIS website (you’re currently looking at) the number one spot! You can e-mail me through my Contact page and I can confirm whether or not you’re actually interacting with me on Social Media.

I have, quasi-reluctantly and uber-cautiously revived an online presence with Instagram (@amyvolume) and also Facebook (AMYV0LUME). I think my LinkedIn is still there but I’m honestly not very active with it.

So far in 2026 health news, I’ve:

Made it 1 year post op with my latest joint replacement (blog post) and 3 years with the new hip (news article, video)! Hoping to chill out and avoid any planned surgeries for at least 12 months!

Unfortunately had a rough go with viral season. Them’s the brakes when you A) have an autoimmune disease that is B) treated/managed by meds that wipe out your immune system. The struggle is REAL.

Living in a body that gives constant feedback is a mighty challenge but I’ve been doing this since 1988 and will continue to move forward, sometimes with accommodations or adaptations as needed, because science (& nature) is awesome! And kids being diagnosed with idiopathic/rheumatoid arthritis don’t have to be as limited or destined for joint replacement procedures thanks to modern medicine.

Thanks for reading and if you know someone who could use a little inspiration in spite of health setbacks or challenges, don’t hesitate to reach out!

* link to Blog Post about me quitting Instagram, Jan. 28, 2025
** link to Blog Post about my profile being cloned by a scammer, May 18, 2023

The Love Song Marathon

To promote sales for the Snowsuit Fund’s 50/50 For the City (draw date: Jan. 16), we went Wall to Wall ‘Love Songs’ on CHEZ.

We didn’t hate it as much as we thought we might (and by ‘we’ I mean myself + the vast majority of listeners who chose to comment).

While I do truly hope we never do this again, it was for a great cause! If you enjoyed or want to preserve the Love Song Marathon Playlist, I have saved it for you here:

Skiing at Mount Pakenham:

It’s our second winter season living near Mount Pakenham. Since my foot was “in repair” last year, I am happy to finally be able to experience downhill skiing. I’ve only ever gone once during a class trip either with Lourdes or Bishop (elementary v. high school; can’t remember).

Click here to visit Mount Pakenham’s website. As a complete beginner living with a physical disability, plus the added challenge of bringing my 8 year old (who’s never been downhill skiing before), I wasn’t sure what we were in for. From start to finish; the greeting and walk through from Front Desk staff, to the hands on help in the Equipment Rental shack, to all the kind, smiling faces and words of encouragement from employees and other skiers/boarders (of all skill levels); it was an awesome night.

In fact… the whole family just purchased skis, boots, helmets over the weekend (thx Play it Again Sports - Kanata)! It was a wonderful experience and we can’t wait to get back out there.

More than happy to answer any Qs you may have about mobility challenges or other health concerns that may be a perceived barrier to outdoor adventure. Just message me but note, I can only share what my experience was. Yours may vary!

Website Updates!

Over the past few weeks, I’ve been updating the website. Freshening things up here and there and also revealing some upcoming price increases & length of stay options for anyone wishing to rent my cottage.

I’m lucky to have such great guests! I’m also lucky to still be fully booked years in advance. If you’re interested in learning more about the cottage - check out our new site by following the menu ‘Windmill Cottage’ options at the top of this screen.

If you have any questions or comments or just wanna say ‘hey’ - you can e-mail me: hey@amyvolume.com