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.
My 35th Birthday Wish for CHEO Kids!
My 35th birthday is April 25th and I’m hoping you’ll give a gift to a child in treatment at the Children’s Hospital of Eastern Ontario aka CHEO to help me celebrate. We’ve been doing this since 2018 and my goal for 2021 is to hit $5,000. Will you help?
Please give a gift to a child in treatment at the Children’s Hospital of Eastern Ontario this April.
If you’re in my family or friend circle and you’d typically treat ME for my birthday, the best gift I could receive that really lets me know that you’re thinking of me comes in the form of a financial donation to CHEO’s Child Life department.
All proceeds go to providing a child (ages 0-18) in hospital with a new toy, game, book, art supply kit and other forms of entertainment (escape) while undergoing treatment.
In previous years, you’ve been able to swing by the radio station or a tour, a chat and a photo (sometimes even a hug or a hi-5). Unfortunately, in person donations are postponed until we can all safely gather again.
Here are some photos from my Birthday Wish:
To be totally transparent, this fundraiser is ongoing. I started it in 2018 and promote it every year during my birth month (April). I want to make it as financially accessible as possible for those who wish to give a gift to a child who could use the distraction. In my personal experience as a CHEO Kid (which runs deep; from 1988 to 2003), many children who spend a large amount of time as ‘in patients’ (receiving treatment that requires them to essentially live in a hospital room) don’t have a lot of options in terms of NEW gifts, books, toys that are JUST for them. Many come from socioeconomically challenged or disadvantaged homes and YOUR generosity makes a massive, life changing impact.
As I age, the urgency to let children with rare diseases or crummy circumstances know that there is hope for a brighter future rises. If I was a millionaire and able to donate in a massive way, I’d probably still be asking you to contribute to the Child Life Department because awareness and acceptance is part of the giving process.
I have spoken about my disease in detail before but if you have any questions that aren’t answered in these posts below, please feel free to reach out.
Here’s a recent video I created to explain Autoimmune Diseases in an easy to understand way:
Life, Death and Everything in Between: My Autoimmune Perspective
The anniversary of Glenn Frey's death from Rheumatoid Arthritis complications is mildly triggering to me. RA is serious and the drugs to treat is are equally serious. It's a high-wire act to stay healthy while knowing your life will likely be shorter than it should be.
It's paramount to do your best to take care of your body; in sickness and health. Make decisions that work for you. I'm on the CRAZIEST drugs ever after failing: methotrexate, leflunomide, sulfasalazine, Plaquenil, naproxen, ketoprofen, cortisone, hydrocortisone, Imuran, prednisone, ciclosporin & the fringe drugs to treat reflux, anemia, various deficiencies, nausea from chemo, insomnia, headaches. My internal organs (+blood) are at risk to damage the way my physical bones and joints are. I had my first joint replacement surgery at 17 which is why I missed my final high school exams and flunked out (graduated college no problem though).
I'm now on Enbrel and you can google how wild *that* is. I'm accepting that risk to live a 'normal life'. I've been on it for 20 years this spring. I've got two healthy kids with my college crush and work as a rock n roll DJ in Ottawa, Canada.
Life is good. It's been hard but the hardships have shaped me. They've allowed me to have a perspective on life, death and everything in between that most people do not get (at least at such a young age).
To summarize: your life and experiences are unique. Maybe you'll live to 100... 120, maybe! Maybe you won't. What matters is how you approach your life and how you treat others along the way. Never, ever, ever take any of this for granted because tomorrow isn't guaranteed.
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.
How Acupuncture Helped Me Survive Pregnancy
When the weight of this pregnancy nearly had me considering Sick Leave and leaving work over a month early, I knew I had to try something, anything to keep going up until my proper leave date.
Some backstory...
I have rheumatoid arthritis. It affects every joint in my body (major ones include ankles, hips and wrists) and has since I was about 18 months old. I'm 30 now. So. Yeah. It's been a wild ride! This is my second pregnancy. I was not working full time during the first (which is stressful in a different way).
December 2015: I gained 40lbs with my first pregnancy.
It was around seven months into this pregnancy that the weight combined with stretching of ligaments and joints in my pelvic region started causing me some outta-this-world pain! I knew it wasn't just the RA and if it continued, how could I continue to be focused at work? I could barely walk to the white-board (about 10 feet from the microphone. Oh, I'm a radio DJ, BTW). Work itself is pretty low-impact, thank GOD, but you know you're in for a rough go when doing things like walking to the washroom, moving studios/offices and getting from the parking lot to said studios/offices leaves you absolutely drained. I was heading to bed before my 2 year old!
I don't like to miss work. The idea of Sick Leave was present in my mind, but I was unwilling to accept that as reality. So... I went to the doctor. Something's gotta give, right? The doctor strongly suggested I try acupuncture.
Hmm...
I had never considered acu-treatment before but the good doctor told me about this place downtown that was great and I was willing to try anything. The place?: OC3. I was set up with Dr. Steen and, let me tell you, his positive attitude and genuine interest in his patients' well-being really helped to keep me going through those painful sessions. Yes. Acupuncture probably cured me, but holy shit. It hurt. It definitely hurt. Dr. Steen (whose official title includes the following: B.Kin, ART, DC Chiropractor) is also a chiropractor (see official title reference like, four words ago), so we would often mix treatments.
What started as two to three appointments per week turned to once a week as my situation improved. The weight was still piling on of course but towards the end of my time with Dr. Steen and the OC3 we cut my appointments back to one every two weeks.
I'm nine months pregnant now and in great shape thanks to some brilliant medical intervention. Every appointment reminder came with an invitation to rate their business and care online. I told myself I wouldn't say anything about their service(s) until I had wrapped my time there.
I can't imagine being in this positive of a head space, feeling this good physically and being able to still be a "fun mom" for my 2 year old, very active son feeling the way I had prior to visiting the OC3. What Dr. Steen has done for me in 8 sessions over the course of 2.5 months is absolutely remarkable. I would highly recommend visiting the OC3 (conveniently located off Elgin St. at Cartier and Lewis with lots of street parking available nearby).
I will be pursuing further treatment with the OC3 post-pregnancy to deal with some ongoing issues relating to my RA which, again, is a method of treatment I hadn't previously considered.
If you have any questions, comments or concerns that relate to this blog post: CONTACT ME. I will gladly answer any and all Qs relating to rheumatoid arthritis, pregnancy with RA and my experiences relating to the treatment I received at the OC3.
My last day with these awesome people! Look at me, walking and smiling and stuff! (Feb. 28, 2017 @ KiSS 1053)