Summer's End
Late August update on my life… What’s been going on with my health, at work and with the cottage this season. Overall, everything is pretty awesome but that awesomeness does not come easy.
Fresh off of updating my Moto Camping blog post, I thought I’d write a little something else. A general update for those who follow me.
Had a positive appointment with my quasi-new (to me) rheumatologist. She is wonderful. My disease is still under control thanks to the drugs (almost 22 years on them, totaling approx. 2.2k injections and counting) and my x-rays indicate that my total hip replacement should take away my pain. She encouraged me to call both of my surgeons (foot one at Civic campus, hip one at General) to ask where I am in the surgical cue and to also ask about getting steroid injections to help keep the pain manageable until corrective surgery happens.
Unfortunately, I couldn’t get through to the foot surgeon. That’s okay, my hip is the bigger issue. I was able to reach his office. That’s when I was informed that I am not in the surgical cue after-all. Some paperwork was needed and never issued due to the hospital’s on-again-off-again lockdown orders. The surgeon had issued me a standing order which exists in my online chart. They have ordered updated x-rays in prep for the surgery back in January. I strongly believed that I was in the cue and was hoping for a replacement this winter… Alas, Module O at the Ottawa Hospital did not push the papers needed to actually book me the procedure. I will be speaking with my surgeon in early September. I’m very hopeful that we can get this sorted. The time has come and though I am scared, I know that my quality life will drastically improve post-op.
These last two weeks have been particularly hard. I generally keep a positive attitude as I have been disabled my whole life. I am very used to pain, fatigue and the sometimes isolating thoughts that come with being chronically ill. To combat the mental lows, I’ve been forcing myself to do fun stuff with friends. That has been keeping me in a positive headspace, for sure. I’ve been super social and having a great time there, no problem. A side effect of that, however, is that it’s left me pretty drained physically so I am laying low this week.
Work is going well. I do find the stairs difficult to use but as long as I take my time, they remain manageable. I love my job and appreciate the ability to work from home when I need to. Haven’t faced too much negative feedback or ‘trolling’ lately but maybe I’m just getting better at ignoring it? There are difficult days where I like to just keep it basic: play music & talk briefly about light stuff in between said music. I am noticing a lot of nasty stuff on social media directed at other public figures/those working in media (radio, tv, digital) and I struggle with trying to find a purpose for that hate filled vitriol.
Is it to be edgy? Is it for likes? Is it for online clout? Does shaming someone for doing their job make others feel better about their life? Do they know they don’t have to listen/read/consume what the object of their hate is saying/writing/producing?
I just don’t get it. I guess the point is to maybe create division so we have a big ‘us against them’ moment but what’s the goal there? It’s tiresome going down that rabbit hole and those are just some of the thoughts I’ve had based on the more coherent things I’ve seen. Then there are the messages that make zero sense which act more as a flare, drawing attention to a severe mental health situation. Overall in my world, I’d say the vibe has been fairly positive.
My cottage rental season is winding down as we inch toward winter. Typically, we shut the cabin down mid-to-late October but with the new water system we had installed this year we may get more time in before the freeze. At the mercy of Mother Nature with that one, but some of my favourite moments there happen during the ‘off season’. Another great year hosting friends and family. Looking forward to doing it again in 2023. Due to some pretty big expenses (exterminator, well/pump replacement, new chimney, new BBQ, may need a new fridge) I am hoping to get more pop-up guests later into this season/early in the next if the weather permits. Cottage ownership is as expensive as it is wonderful.
I never find enough time to write. I mean, I should be exercising right now but after only 13 minutes I had to stop. This week it’s about listening to my body. Who knows what next week will bring?
Vocal Issues and RA
My voice is affected by Rheumatoid Arthritis. It just is. I can’t “take a lozenge” or realistically do anything to improve the strain on my voice due to inflammation and pain. Not exactly ideal when you’re meal ticket IS your voice, which it is for me.
I’ve been living with Arthritis virtually my entire life (diagnosed in 1988) and I talk about it more now in hopes of letting other kids know that they are ‘normal’ and can achieve what others think is ‘impossible’. It’s not a matter of ‘thinking positively’ either, though I’m sure that couldn’t hurt. It’s about finding the right medical team, appropriate treatments (which can take years and do more harm than good), surgery and other methods of accommodating the painful, draining disease which often causes other painful, draining diseases or infections. If the RA itself doesn’t, the medicine almost certainly will.
My voice is struggling this week. I feel okay, overall, but it’s grading - to be told that my product (my voice) isn’t cutting it and to try again, try again, try again. The truth is, the more that I re-record or re-attempt something: the worse it will get.
If you accept me for my personality, you must also accept me as I sound. Some days I sound smooth. Other days, I sound rough. It has been this way my whole life and awareness is appreciated. You don’t have to like me or accept me, we all have our preferences and there’s nothing wrong with that, but at 35 - this is how I sound.
Aurora's Birth Story
This pregnancy was similar to my last, with little Everett born January 2015. Long, hard and gross. Very gross. I think I was sicker than I've ever been with little R in my tummy. I was hospitalized (briefly) with strep throat and had countless viral infections (mmm... pink eye, multiple times). Happy to say little R made it through and appears to be one happy and healthy babe, but we're skipping ahead here...
Unlike with Everett, Aurora was a planned baby. Ryan and I knew we wanted another child. Our families knew. Work knew. It was thoroughly planned and lucky for us, it didn't take long to conceive. I'll admit it: a planned pregnancy is a little less exciting than an unplanned one! I had been taking the vitamins, laying off the sauce and habitually peeing on sticks for a couple months before the wonderful confirmation came.
Like I said before, the actual pregnancy on me was rough but since baby was doing okay in my belly the doctor thought that attempting VBAC (vaginal birth after C-section) might be a good idea. It is said to lessen recovery time among other things. Though I wasn't super into the idea of VBAC based on what had happened during Everett's birth (emergency C-section/a whirlwind story), the idea of going for it naturally was still somewhat appealing and a shortened recovery time was definitely up my alley. I did have another baby (Everett, 2 years and 2 months) at home, after all.
We had discussed this early on and I had months to do some research and really make an informed decision. All the while, I was working full time. I know, I know. I work on the radio. It's not a physically intense job by any stretch but believe me... When you're exhausted, your brain & mouth don't tend to work as well as they used to and I was exhausted! Sure beat being unemployed though - as was the case when I was preggo with E. That was another level of stress I'm very happy I didn't have to deal with this time 'round.
“Birth is a trip. It’s a mental, physical and emotional journey that is personal to every person who experiences it first hand.”
I stopped working at the end of February. The plan was to schedule a C-section but to be open to VBAC if I went into labour early and things were looking good. Baby was measuring big (85th percentile) near the end which made the possibility of delivering her naturally seem very, very frightening for me. I'm little and she, like her brother, was BIG.
Nearing my C-section date I got very "inside my head" about all the things that could go wrong. I was thinking a lot about death; what if she didn't make it? What if I didn't make it? What if we both died? I was also worrying a lot about how this new addition to the family was going to affect little Everett. My first baby! Our little surprise who quickly became my whole friggin' world; how was he going to react to a new baby? Would I love him less? How could I make sure everyone got the right amount of love and attention?
So many unanswered questions and I was also freaked out about going into labour naturally and having to experience a vaginal delivery I didn't really want to have but does choosing a repeat C make me lazy? A bad mom? Am I robbing baby of a natural entry into this life? Seriously. These are the thoughts that were going through my mind which is why, nearing her arrival, I blocked out all baby talk. My apologies to those of you whose text messages and e-mails I didn't return.
March 20th... the wait is over.
Ryan and I headed to the hospital for an 8AM check in. While waiting for a room in Labour and Deliv. we bumped into the OB who'd be delivering our baby. Shout out to Dr. Garber, by the way, who was totally right about a scheduled C-section being a wildly different experience than an unscheduled or emergent one. He was on his way to deliver a baby (via C) the hard way. That news kinda helped to calm my nerves. I made it through a difficult C with Everett, so today should be a slice of cake, right?
Velia was the first nurse who helped us out once we made it to the pre-op/waiting room. She is really awesome and I told her about this blog so "HI VELIA - If you're reading this - you were one of the best parts of our journey!" I got a little queasy and had to lay down when the IV went in. Yes, I hate needles. Muchly.
8AM... 9AM... 10AM... we were joined by another couple (separated by a curtain) awaiting their C-section. Knowing other people are undergoing the same scary thing as me has always been something I found calming. I was also watching the clock because I had asked my coworkers at the radio station to put on a special song for Aurora's arrival, scheduled for sometime between 12PM and 1PM.
Shortly after 12PM we were escorted into the OR. Well, I was. Ryan had to wait until the anesthetist said it was okay. I've never WALKED into an operating room before so this was a first! The room was intimidating to say the least but I knew I wasn't the first who'd be experiencing this today. Shortly after hopping up onto the bed, I asked the medical staff to tune the radio to 106.1 CHEZ. You see, during Everett's birth I asked the same and got to rock out to an epic playlist during his spontaneous arrival. I was really into the music and not working for Rogers Radio at the time so it was quite the keepsake when Robin (Harper) and Steve (Colwill) answered my request for the playlist.
You don't see much when you're lying there so it was very nice when Ryan was let in. It was also super nice to know the person heading the surgery! Last time was a major blur - it all ended well, but it was really scary in comparison.
Everything below my breasts was warm and fuzzy and then completely numb. The time between going numb and the countdown to baby's first cry I find the most intense... You know it's ON and your life's going to change within the next 30-45 minutes.
There was a lot of pushing, pulling and talking with the staff. Everyone in there was great and, just like I told them pre-op, I forgot most of their names. Except Heather! Heather was there during E's delivery and she actually remembered me thanks to the radio connection.
Aurora "Rory" Stardust joined the outside world on March 20th at 13:13 weighing 8lb 6oz to U2's New Year's Day.
Her brother, Everett was born January 9th at 11:11 weighing 9lb 6oz to AC/DC's Dirty Deeds (Done Dirt Cheap).
The whole procedure was a truly great experience. She came out a beautiful, healthy baby girl and I managed to pull through okay. There might be some scar tissue ickiness going forward with it being my second C-section so this will be my last birthing rodeo. Like - FOR SURE.
Everything I was told about scheduled C-sections was absolutely true. It was a cool, calm and collected experience - POST OP. Prior to, I was anything but cool, calm and collected. Birth is a trip. It's a mental, physical and emotional journey that is personal to every person who experiences it first hand. I dealt with it on my terms this time and am absolutely grateful to the staff at the Civic Hospital, Dr. Garber and his team, Velia (that heated blanket you gave us in recovery is possibly the greatest invention ever) and the staff in the Mother Baby unit who took such stellar care of us.
Friends and family - thank you for the support you've given us over the past several months. Thank you for allowing me to ignore you, to hermit and to have the experience I wanted to have. I put myself (and baby) first and highly recommend you do the same if you are on or planning to begin your own birth journey.
A special shout out to Robin and Jacki from CHEZ for sending me Rory's playlist which you can see by CLICKING HERE.
Being asked to PROVE a disability is like being punched in the face.
TL;DR: Accessibility Policy of local music festival needs revision to avoid failing those with "invisible" disabilities.
I want to approach last night's personally humiliating situation with a caring and understanding disposition. I mean, maybe people fake handicaps to get special treatment? That's really unfortunate for people like me who have a (sometimes) invisible disability.
I do not have a ParaTranspo account and driving was not an option with the extreme road closures. My partner and I decided to Uber to the location but were dropped off fairly far away due to said closures. Hundreds of people including police and security witnessed me "doing my best" to walk (which was more of a painful hobble) from Scott and Preston down to Wellington.
Once there, we were told by a security person to talk with the accessibility volunteers working a gate that was fairly close by.
"Yes!" I'm thinking. "Finally, we can get in and sit down!" Because at 30, I have to sit down at a concert because it's too painful to stand for a length of time.
July 13 EDIT: We were instructed by a police officer and festival security to speak with staff at the Para Transpo/Accessible Entrance gate to gain nearer entry to festival grounds. At that gate, volunteers told us we couldn't enter without proving my disability. Look down and to the right for some of the things security asked me for. None of these items are listed under the festival's "Accessibility Policy" so there is no way for festival goers to know.
As a result, we had to walk to the main gate which was much further away. It was very painful.
I don't want to relive the experience that keeps playing over and over in my head this morning... It was humiliating, spirit breaking and poorly handled. This is the same shit I've been dealing with my entire life - "where's your proof"?
Being a meticulously over prepared person by nature, I wasn't expecting to be caught off guard. I checked and double checked what was OK to bring into the grounds. We Ubered as close as we possibly could to spare me pain and energy (I have a limit). I did not know I needed any of these extra things to prove what was last night (and what has been this last couple weeks) visible: my disability.
If it wasn't my favorite artist playing I would have left.
I was so upset that I cried while limping to the main gate.
I cried while security watched us enter the main gate.
I cried when my partner was approached by the leader of the accessibility services team with bracelets to the accessibility area for concert viewing as a way to try to make up for our shitty start to the night. (???)
Things security suggest I do:
- Bring them my handicapped parking permit
- Provide a doctor's note
- Call my manager, a coworker or former coworker to corroborate my claims of being physically handicapped
November 11, 2014: I was pregnant and unable to walk to the Remembrance Day ceremony - that didn't stop me from paying respect.
I'm 30 and have had Rheumatoid Arthritis for 28.5 years. I have good days and bad days. My body has been at war with itself, literally eating away at joints from my toes to my neck (everything except my back is affected). Not only does RA wreak having on bones and joints, the three decades of drug use has killed my stomach, esophagus and organs used to filter said medicines.
“Emotionally, it takes a toll. It is a pretty unreal feeling to wake up and learn that every day brings you new life lessons about what you are no longer capable of. Like, “Oh shit. I guess I can’t use scissors anymore!” That’s my reality.”
Despite spending a lot of my childhood in hospitals (CHEO, SickKids and Hugh McMillan) I didn't grow up focusing on the things I can't do. I focus instead on the things I can.
I can use my voice to ask YOU the public and concert/festival/venue organizers to be better at not making people with a lot going against us feel like you're against us, too.
Please clearly post or state that in order to benefit from an accessible entrance or accessibility services, one must bring proof of one's disability. In my case, going home to retrieve proof was not an option physically.