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.
Tuesday, April 30, 2013
Monday, April 8, 2013
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.
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.
Thursday, April 4, 2013
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.
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.
Tuesday, March 19, 2013
Just like everyone else
I plan all kinds of things in my life - dinner parties, kids parties, meal plan for the week, summer vacation and what my work projects might be for the next six months - but planning to run a 5K race in September - 6 months away? Um, no. That has not been part of my planning repertoire. Or the 5K race I signed up for here in Ottawa in May - that I signed up for last October.
Right around now, 22 years ago, my shoulders started hurting with pain and stiffness, and it was hard to get warmed up for volleyball practice in the morning. And then volleyball season finished and my feet hurt, then my knees and things went downhill from there resulting in an RA diagnosis in July.
But for the last 21 years, I haven't really planned much of anything in terms of physical activity, it was more planning to avoid, as opposed to planning to do. I planned where I could take rest breaks, how much walking I would have to do, how tired I would be, when I could nap, how I can manage juggling work, kids and a house.
I've spent the past 21 years in pain, inflammation, doctor's offices, blood clinics, with joint injections, with med students, with nurses, in the hospital, in the clinic, at X-rays, with crap shoulders, bad wrists, tender feet, swollen knees and pumped full of drugs that may or may not cause cancer have caused hair loss, weight gain, headaches and irritability. And I managed to work myself through every test, procedure, needle, surgery, consult, and every bit of poking and prodding.
As I read this it does sound quite depressing. I'm not one for sympathy. Everyone has challenges, I know what mine are and I can manage them. But, yes, parts of my life have been pretty lousy, and the majority of it has been perfectly wonderful. But it was mine to live through and manage, and I did and I have and will continue to.
Even a year ago, I would have laughed at the idea of running 5K or taking less medication. It seemed impossible. I was barely able to get through an average day, let alone adding in anything that might drain my limited energy further. I've been on my wonder infusion drug (Actemra) for just over a year, and I can say without hesitation or overstatement that it has changed my life. I feel normal again. I feel just like everyone else. And if you've never lived with a chronic illness, you cannot understand how preciously wonderful it is to be average. Normal. Boring. Pain-free.
But now that I'm healthy, I'm having a hard time coming to grips with it. Let's be clear - my version of healthy is different from most other people's. I still go for monthly infusions of designer drugs to the tune of $2,200 per month. I see a surgeon once a year, and a rheumatologist 3-4 times a year. I have routine x-rays and bloodwork. I take some anti-inflammatory medication, but other than that I am healthy. That's next to nothing for the average RA patient.
Being stable is the ultimate goal of anyone with a chronic illness - so why am I struggling with this? I'm so used to being sick, I don't know how to be healthy. I don't know that I can plan. I also am afraid to plan, as I'm always looking over my shoulder. I mean, how long can I be healthy for? I know someday the medication will stop working - but when? 6 months, 3 years, 6 years? I'm afraid to to get used to the idea of planning, being able to plan. I'm afraid that as soon as I become comfortable with the idea of planning, all my good health fortune will vanish and I'll be back to where I was. Which wasn't so bad, but now that I know better health exists for me, I don't want to return to pain, inflammation and the pills.I think this is my way of self-preservation. I can't lose what I don't invest.
This has been an emotional knot that I've been working on for a while. Today brought a visit to my rheumatologists office, and the usual introspective and melancholy thoughts of RA. And I couldn't get over the contrast - I'm feeling fantastic physically, but conflicted about that emotionally. Best song for today is some U2, Stuck in a Moment. The last line stayed with me "It's just a moment. This too shall pass." I'm feeling less stuck already.
Right around now, 22 years ago, my shoulders started hurting with pain and stiffness, and it was hard to get warmed up for volleyball practice in the morning. And then volleyball season finished and my feet hurt, then my knees and things went downhill from there resulting in an RA diagnosis in July.
But for the last 21 years, I haven't really planned much of anything in terms of physical activity, it was more planning to avoid, as opposed to planning to do. I planned where I could take rest breaks, how much walking I would have to do, how tired I would be, when I could nap, how I can manage juggling work, kids and a house.
I've spent the past 21 years in pain, inflammation, doctor's offices, blood clinics, with joint injections, with med students, with nurses, in the hospital, in the clinic, at X-rays, with crap shoulders, bad wrists, tender feet, swollen knees and pumped full of drugs that may or may not cause cancer have caused hair loss, weight gain, headaches and irritability. And I managed to work myself through every test, procedure, needle, surgery, consult, and every bit of poking and prodding.
As I read this it does sound quite depressing. I'm not one for sympathy. Everyone has challenges, I know what mine are and I can manage them. But, yes, parts of my life have been pretty lousy, and the majority of it has been perfectly wonderful. But it was mine to live through and manage, and I did and I have and will continue to.
Even a year ago, I would have laughed at the idea of running 5K or taking less medication. It seemed impossible. I was barely able to get through an average day, let alone adding in anything that might drain my limited energy further. I've been on my wonder infusion drug (Actemra) for just over a year, and I can say without hesitation or overstatement that it has changed my life. I feel normal again. I feel just like everyone else. And if you've never lived with a chronic illness, you cannot understand how preciously wonderful it is to be average. Normal. Boring. Pain-free.
But now that I'm healthy, I'm having a hard time coming to grips with it. Let's be clear - my version of healthy is different from most other people's. I still go for monthly infusions of designer drugs to the tune of $2,200 per month. I see a surgeon once a year, and a rheumatologist 3-4 times a year. I have routine x-rays and bloodwork. I take some anti-inflammatory medication, but other than that I am healthy. That's next to nothing for the average RA patient.
Being stable is the ultimate goal of anyone with a chronic illness - so why am I struggling with this? I'm so used to being sick, I don't know how to be healthy. I don't know that I can plan. I also am afraid to plan, as I'm always looking over my shoulder. I mean, how long can I be healthy for? I know someday the medication will stop working - but when? 6 months, 3 years, 6 years? I'm afraid to to get used to the idea of planning, being able to plan. I'm afraid that as soon as I become comfortable with the idea of planning, all my good health fortune will vanish and I'll be back to where I was. Which wasn't so bad, but now that I know better health exists for me, I don't want to return to pain, inflammation and the pills.I think this is my way of self-preservation. I can't lose what I don't invest.
This has been an emotional knot that I've been working on for a while. Today brought a visit to my rheumatologists office, and the usual introspective and melancholy thoughts of RA. And I couldn't get over the contrast - I'm feeling fantastic physically, but conflicted about that emotionally. Best song for today is some U2, Stuck in a Moment. The last line stayed with me "It's just a moment. This too shall pass." I'm feeling less stuck already.
Saturday, March 9, 2013
Choices
Some choices, you know the immediate consequences. Some take a few
days, weeks, months or lifetimes to find out if you made the right
choice. But therein lies my post. You sometimes do not know what the
right choice is, and you'll never find out. You make the best decision
that you can at the time - rely on your knowledge, information available
and instincts.
When I think of long-lasting, irreparable, big-consequence choices - I think about the choices I make for my health and care of my RA. Today I had a terrific headache. All my usual plans of attack didn't work, and I know it is a side effect I experience from my fancy infusion drug, Actemra. As with most drugs for RA in the "biologic" class, there is long and scary list of potential side effects, including increased risks of some cancers. The side-effects I can pin point for me are headaches, hair loss and of course not healing as well from bumps and bruises.
There are differing viewpoints on natural vs. pharmaceutical treatments, long term drug effects vs. quality of life. I find myself frustrated at times when friends, co-workers or strangers comment proudly on the fact that they "don't like to take pills". I find myself biting my tongue, as I don't have that luxury in my life. If I didn't take pills or medication, there is a decent chance I would be curled in a ball of pain in my parent's basement for the past 20 years. I've chosen to take the drugs, live with the consequences - whatever they may be, and life my life to the fullest. I am concerned with how all these medications over all these years will impact my body. But I balance that out with making the best decision I can at any given time.
One of my favourite songs from last summer was The Fighter by Gym Class Heroes. I ran miles and miles to that song, as I was training for my 5K race. I will continue to make choices and fight for my health. It's been 9 months that I've felt "normal". I feel like most other people do. It's amazing. And I won't be letting that go anytime soon - so I choose to take the drugs and keep running and fighting.
When I think of long-lasting, irreparable, big-consequence choices - I think about the choices I make for my health and care of my RA. Today I had a terrific headache. All my usual plans of attack didn't work, and I know it is a side effect I experience from my fancy infusion drug, Actemra. As with most drugs for RA in the "biologic" class, there is long and scary list of potential side effects, including increased risks of some cancers. The side-effects I can pin point for me are headaches, hair loss and of course not healing as well from bumps and bruises.
There are differing viewpoints on natural vs. pharmaceutical treatments, long term drug effects vs. quality of life. I find myself frustrated at times when friends, co-workers or strangers comment proudly on the fact that they "don't like to take pills". I find myself biting my tongue, as I don't have that luxury in my life. If I didn't take pills or medication, there is a decent chance I would be curled in a ball of pain in my parent's basement for the past 20 years. I've chosen to take the drugs, live with the consequences - whatever they may be, and life my life to the fullest. I am concerned with how all these medications over all these years will impact my body. But I balance that out with making the best decision I can at any given time.
One of my favourite songs from last summer was The Fighter by Gym Class Heroes. I ran miles and miles to that song, as I was training for my 5K race. I will continue to make choices and fight for my health. It's been 9 months that I've felt "normal". I feel like most other people do. It's amazing. And I won't be letting that go anytime soon - so I choose to take the drugs and keep running and fighting.
Friday, February 22, 2013
Friendship
In everyone's life, at some time, our inner fire goes out. It is then burst into flame by an encounter with another human being. We should all be thankful for those people who rekindle the inner spirit.I've been reflecting on friendships and relationship lately. Who are your friends? Why are they your friends? What is the basis of your relationship? How do you categorize your friendships? How many best friends do you have? Close friends? Acquaintances? Who can you call at 3:00 am? Who rekindles your inner spirit?
Albert Schweitzer
Through the ups and downs of life with RA, it's the equitable support of friends and family that has helped me navigate the emotional roller coaster that RA can dish out. I don't have any family close by, and I rely on friends for support and care - they've taken on a pseudo-family role in my life.
I'm grateful for all the friends who have brought joy, laughter, love, empathy, sympathy, insight, secrets, kindness, debate, good food, opinions, trust, support and scotch to me. Thank you.
Friends are the ones who agree that going downhill at an 8 degree decline on cross country skiis is terrifying, but agree to do it with you anyways.
Friends are the ones who offer to go to with you to your 8 week ultrasound when you think you're having a miscarriage.
Friends are the ones who mentor you, guide you and act like the big sister you never had.
Friends put on your socks and tie your shoes or put on your coat after you've had a shoulder replacement, and can't use the very necessary second arm to accomplish these tasks.
Friends are the ones who endure hard-ass bosses and live to tell the tale and laugh about it for years to come.
Friends are the ones who ask "how are you" and are genuinely interested in the answer - like really interested.
Friends are can be found in drinking buddies from work - people you spend more time with than your family some weeks.
Friends are those who you find rest in their company - it's just easy. You can be silly, serious or scared and you are accepted all the same.
I recently had a fantastically off-key and very loud sing-a-long to Oasis' Wonderwall while driving with one of my friends. I'm still laughing at how horrific the singing was, and will remember with a smile every time I hear the song. "Wonderwall" could be interpreted as a love song, but I see it as a song of support and friendship - and sometimes our inability to express love to our friends and gratitude for having them in our lives. So, um, thank you.
Friday, February 15, 2013
Bumps & Bruises
I keep thinking about the book, "Oh, the places you'll go" by Dr. Seuss. I've been a bit of everywhere, except sitting quietly thinking at my laptop. I've been sitting at my infusion centre with bad-ass needles in my wrist, and that spurred this posting.
I'm fairly tough, or so I think. Five surgeries and two children under my belt, I am no pushover to pain. But this particular month, with this particular needle, it hurt - a - lot. Twelve days later and I still have a bruise. But the point of this post is not to whine about a needle, but the aftermath. Usually I have my IV inserted into the antecubital region (aka - the crook of my elbow), but in recent and devastating news, there seems to be significant scarring on my favourite and normally pain-free vein - likely due to overuse - and it is no longer a viable site for IV insertion. So, into the hand it goes.
Man, that hurts, and for a 1-hour IV infusion, the pain is highly disproportionate to the medical procedure required. Fast forward a few days, and my hand is blueish/purplish with residual trauma from the infusion. Insert one very curious 7-year-old son. So I fessed up, more than I have in the past. My children don't know anything about my disease other than my shoulders sometimes hurt, and I've have them "fixed" (read: replaced). So I told Patrick that mom goes for medication each month, and they use a needle to get the medication into mommy. I love kids - you can almost see the "processing" bar in their heads when they take in new information. I could almost see him formulate his next question - "why"? And because I didn't want to answer that one, I headed him off with: "Not all mommies need medication, but yours does". He seemed to accept that.
And then he hugged me and kissed my hand, and hoped that I felt better soon. And I almost lost it. How is does my 7 year old channel more delight, kindness, goodness and empathy than most adults? He has such a good heart. I don't know how to talk to the kids about my arthritis - other than little bits at a time. I am trying to keep all kinds of communication open with them now, knowing that in a couple of years, I'll need all the help I can get. I've been listening to Imagine Dragons - It's Time. A song about moving on, and being yourself at the same time. I am trying to move on, but am clawed back by reminders of who I am - bumps and bruises and all.
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