DryFeb: Day 1

Should I start this off by admitting my “cheat” strategy? Here’s what I did last year and what I have put in place this year as a celebratory measure, should it be employed/necessary.

I did not have any alcohol on Monday, January 31st and DryFeb, for me, means being alcohol-free for 28 days! So this “cheat” means that if I wish to have a celebratory drink on the last day (Monday, February 28th) then I will! Judge if you must but being alcohol-free is a feat worthy of cheers!

Day 1: Tuesday, February 1st

Started the day by weighing myself. I will be sharing a + or - result once per week (every Tuesday) but no totals will be given because weight isn’t my favourite topic of conversation. I would like to lose a couple pounds this month and am curious to see if a lack on alcohol consumption will do anything for me in that respect.

Health benefits of Dry Feb

By signing up for a Dry Feb, not only will you be raising funds for the Canadian Cancer Society, but you could feel some great personal health benefits too.

Each year participants report sleeping better, having more energy and being more productive!

Here are some of the benefits you could experience by going dry this Feb:

Sign up for Dry Feb (source: DryFeb.ca)

I also had my first assessment with a new Athletic Therapist downtown. She is very awesome and our first session gives me hope for pain management and “prehab” structure which will help me post operation.

I’m at work now and we have a new contest goin’ which keeps us hosts incredibly busy so I hope to be posting about DryFeb a few times per week throughout the month.

If you want to see what being alcohol-free does for your overall health, join our team! We’re called the Dry Babies and we’ve already nearly met the halfway part of our fundraising goal! Joining is no-obligation, free and fun. You can be dry for as long or as little as you are comfortable.

Avoiding Negativity for 12 Days: a reasonable goal?

Things are opening back up.

Restrictions are easing.

Vaccines are more accessible. Pills are coming.

The canal is open.

Thinking about some of the negative things I’ve experienced lately and/or been witness to has me shifting focus. Focusing on things that aren’t negative (they don’t have to be overtly positive, just not nasty) is going to be my goal for the rest of the month. Sure, it’s only twelve days… but trying to stay away from the negative for any length can be a difficult task.

Does doing so manifest ‘good’?

I don’t know. I’m not so sure. I think a situation is what you make it or, at least, how you react to it. I’ve been slowly piecing together a ‘community’ of disabled women to follow on Instagram, which has been so wonderful. People who share my experiences as a young person living with rheumatoid arthtirits.

Work is going pretty good, too. I was happy to get back into the studio now that the kids are back to ‘in person learning’. This will be a blip in the timeline of our lives as we get older, I hope. Working from home is a privilige but it’s exciting to be able to fully perform in a way only a host can from the control room.

One of my original videos has received nearly 1.5 million views. I made the mistake of checking that out (I’ve never had such online ‘success’) and some of the comments were… well, you know! So, yeah…. back to my original point:

It’s going to be tough to stay away from the negative for the next twelve days but it’s worth a shot.

What does ‘staying away’ mean? Here’s my guideline that I am completely making up as I go:

• No reading the comments when I am not physically at work.

• No searching for or through old social media posts.

• Avoid or ignore inflammatory situations (online and IRL).

• Get outside.

• Have more conversations with friends.

• Plan for something exciting.

I’m not going to try and be positive or sunny or bright because life just isn’t like that. I’m going to try and avoid the negative, which is doable.

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.