Pretty "Special"

A couple Thursdays ago brought my first visit to a neurologist. Nice. I am slowly but surely making my rounds to the various clinics and modules that the Ottawa Hospital has to offer and accruing a gaggle of specialists at an alarming rate.

Rheumatologist. Obstetrician. Orthopaedic Surgeon. Opthomologist. Neurologist.
How did I land in the Neurosciences Clinic on a Thursday afternoon? In a pre-op appointment back when I was heading for shoulder replacement surgery in 2011, I had x-rays taken of my neck. The surgeon wanted to be aware of any issues that might exist in preparation for the surgery. As it turns out, there are indeed issues with my neck, which showed up in my films.

In a clumsy way and over-explanitory way, one of the residents talked about my neck and the issues that might be there in one of my pre-op appointments. But when asked specific questions like do I have restrictions and what does this mean, he fell back onto me needing to speak with a specialist. Okaaay. And that is where things sat for well over 2 years.

Flash forward to 2013 and a sunny April afternoon. Dr. Da Silva was a wonderful man with kind eyes and a gentle manner. He asked a set of questions, checked my balance and reflexes, but since I don't have any symptoms there wasn't much to talk about. I went for a fresh set of x-rays and he compared them to the ones from two years ago. No real progression, which is good news, but I do have "C1 - C2 sublaxation" and need to come and see him once a year for the rest of my life (well, his life really, since he is older than me). I have a loose ligament at the top of my spinal column which, if it progresses, could require treatment and possible surgery so it doesn't compress my spinal cord. Yep, that's all. Sounds so simple when you type it, but the future is scary if this progresses.

In closing the appointment, we talked about restrictions and activities that I should not be doing. I've never had restrictions before. Generally, with RA, an "as tolerated" approach is taken. Until a year ago, I wasn't able to do much with my body anyways, so it wasn't an issue.

So no skiing, no mountain biking, no activitiy where I may fall at an awkward angle and damage my neck in the process. I can set skiing aside fairly easily, as with two crap shoulders and a fear of falling, it was never a sport I seriously considered. But the mountain biking was tough to swallow. I started biking last year, and really enjoyed it, and planned to upgrade my bike this year, potentially to a mountain bike. I bike on trails in the neighbourhood, some with gravel, rocks and roots and they are level for the most part. I'm not barrelling down a mountain on a bike a break-neck speeds (literally). But still, this means I can't go on the side trails that are more challenging.

It's not the actual activities that I'm upset about not being able to do, it was more the restriction on what I could do, setting aside if I wanted to or not. It's the taking away of the possibility and opportunity. The further shrinking of the field of what I can do. It's seeing my future slowly but surely getting smaller. And having one more thing on the horizon that could go wrong. It's just one more thing.

The appointment itself was great. What the appointment respresents for the future is not. A friend of mine recently introduced me to an alternative band called Vampire Weekend. Ok, setting the band name aside, they have some great music. I've latched onto "Giving up the Gun". It's a song about going back to your roots and re-kindling your past passions and hobbies that you've lost. This is a good juncture to focus on what I can do, versus what I can't controll.

Pincushion

I'd like to think that I can take my lumps. I'm tough. But some days, your pain tolerance and patience run thin and everything just goes to hell in an handbasket. Last Tuesday I went for my monthly infusion of my wonderdrug. Usual day, usual time, usual nurse. Nothing new here - except it was a little colder outside, and my veins were not as prominent as usual. But I live in Ottawa, and unlike parts of our winter where it was -40, a cool spring day of 0 degrees should not send my veins into hiding.

And hide they did. Four, count em - FOUR tries it took to get an IV line into me. It was demoralizing and depressing, painful and unpleasant and overwhelming upsetting.

In the end, the nurse wrapped my hand in a warm compress to bring the veins up, and that finally did the trick. But not before there were a reasonable number of holes in my hands, wrists and arms to make me look like an IV drug user. Well, ok, not like an IV drug user - I'm sure they hide their needle marks more creatively, but I certainly felt like a pincushion. And I felt small and helpless, which is not a feeling I am used to, comfortable with or interested in repeating.

The whole experience was a reminder that I do live with chronic illness and that it sucks at times. It's painful and difficult and unpleasant. And it's mine to deal with.

A friend of mine introduced me to the Black Keys a little while ago - where have they been all my life? So while I was licking my IV wounds lying in my armchair waiting for the IV drip to work its magic, I put some tunes on - Lonely Boy. A rockin' song to get me through my less than rockin' day.

Everyone's got something

My son has been in speech therapy on and off since he was just about 3 years old. At first it was for a fairly significant stutter, and that improved. Then it was for sounds, sound blends and everything to do with the letter “s”. He is still part of the speech therapy program at school in grade 2. Speech therapy at a young age is designed as learning through play. I can’t count the number of times I’ve played Snakes and Ladders to promote proper “s” sounds – speech therapy had always been fun.

This year Patrick was resisting going to the speech therapist. He was being pulled out of class, and his friends were asking why. He was embarrassed that sometimes his friends and teachers didn’t understand him, and embarrassed to be pulled out of class. He noticed that he was different from all the other kids and was uncomfortable with this new-found knowledge.

So began the “everyone has something” chats – my way of explaining that no one is perfect and everyone has a challenge that you may or may not know about. We talk about his friend who has diabetes, and how Matt injects many needles a day to keep him healthy. We talk about people who need glasses, wheelchairs, canes and seeing-eye dogs. We talk about friends in his class who have a hard time playing with other kids because they don’t know how to share, or give and take.

And finally we talk about how mommy has bad shoulders and she needs medication and “new shoulders” (joint replacements) to help her out. The theme being that no one is perfect and everyone has something that they are working on. He is working on speech and I am working on my shoulders and that's ok.

I know what my something is. I’m comfortable with it. It’s taken years to come to this place in my life – literally, years. I think it's important for kids to grow up and realize that not everyone is perfect, and everyone struggles with issues - mental, physical, social or economic. I'm hoping that by being more open about my struggles, the kids will be able to come to me with their issues and realize that everyone struggles - and that's ok, it's just part of life. To this end, Pink's "Perfect" has always spoken to me - "you are perfect to me" - I think we all need to remember that more often.