I've spent the past eighteen months in reasonably good health. Well, outside of recovering from my second shoulder surgery and then going under the knife again for my third surgery. Reasonable health is a relative term. I found a biologic that worked extremely well for me and I started to run and bike - a couple of things I never thought I would do. I felt more "normal" than I had in decades - literally.
But now, in my post-operative state, I am flaring. And it's been quite some time since I have felt this poorly. I'm having four to five hours of morning stiffness and hands that aren't working properly. And right now, it's hard to avoid the fact that I have a chronic disease that causes me pain and disability. I can't do what I want to do, and it's been a while since I've had limitations.
In the past week, several co-workers asked about me with concern - they wanted to know if I was feeling OK. I - of course - lied and told them everything was fine. Not everyone wants or gets to know the truth. When I asked a friend about it later, and about the difference they see - he said it was the sadness in my eyes. Good observation. For anyone who knows me, that would be a substantial change from my usual self.
And I know that sadness comes from pain and fear. The pain I'm actually experiencing takes a toll. It requires an untold amount of energy to lie and pretend at work that everything is wonderful - because it's just not. It is mentally and physically exhausting to be in pain. The fear, is that this is not a short-lived flare, but could be the tip of the iceberg of new drugs and more pain and more inflammation.
Due to my shoulder surgery, I skipped two doses of my fancy biologic drugs as they offer a higher risk of infection which is a bad combination with surgery. Since my surgery I have had two doses, but seem to be flaring nonetheless. I'm hoping this is a temporary set back due to my missed doses, but the downward spiral of "what if? keeps playing out in my mind.
I'm back on prednisone - the drug everyone loves to hate. Short term therapy and a medium dose to kick the flare away - hopefully - and return me to my rightful state. The first day I took 30 mg, kicking off my day with 15 mg. It's been a while since I've been on that high of a dose that I forgot the glory of a prednisone "high". On Tuesday, I felt like a rock star - I really did. I was only half joking when I told people that I was jacked up on 'roids - I felt unstoppable.
I'm a veteran of this whole chronic disease thing. I've had RA for twenty-two and a half years. I know I have been spoiled in the past year and half with excellent health. I haven't really had to behave or think too much about day to day life with RA. And it's hard to go back to that.
I'm still on a Chvrches kick, it seems. Song of the day is "Under the Tide". I'm trying to keep my head up and hold on.
Sunday, December 22, 2013
Monday, September 30, 2013
A veneer of Bravery
Surgery is tomorrow. One sleep. In 48 hours it will all be done - and I am utterly terrified. I know enough of what is coming to know that it's reasonable to feel this way. I've talked about my surgery to friends, co-workers and family in an abstract third party manner. Everyone seems impressed with my positive attitude and nonchalant manner with which I am handling all of this. It's a good show.
I'm petrified of what I don't know is coming and almost more afraid of what I do know is coming. I don't know what kind of pain control I will have for surgery. My last experience was not positive - to say the least - as I woke up screaming in pain in recovery. I'm hoping for better this time. It can only be better.
I do know that I am giving up control on many parts of my life. And that might be the hardest part. I'm not afraid of pain, I'm afraid of losing my independence. I'm a horrible patient - I am not good at asking for or accepting help. I've worked so very hard to be able to do things myself. And in 36 hours I won't even be able to get dressed by myself.
I've done well this time to keep myself busy enough over the weekend to not have a spare second to reflect on the upcoming week. But as the weekend winds down, and my body screams with pain in response to my over-doing-it this weekend, I am forced to sit and think. It's almost a good reminder as to why I'm going through the surgery - my shoulder is so very sore right now. It's a not-so-subtle reminder that my shoulder is not going to get better automagically, and that this is surgery I need and will appreciate 4-6months from now.
My 6 year old daughter brought me her most prized possession in the world to snuggle with - pink blankie. There is no precedent for this act of love. Chelsea does not give up her blanket. Ever.
For anyone. I guess this further demonstrates the magnitude of my surgery and how it not only
impacts me, but many other people in my life.
I'm on a new music kick, and have discovered Chvrches and their song "Recover". It's about decisions and being at a cross-roads. That's me. At the cross-roads of pain and surgery. I'm really hoping the surgery path works out for me this time.
I'm petrified of what I don't know is coming and almost more afraid of what I do know is coming. I don't know what kind of pain control I will have for surgery. My last experience was not positive - to say the least - as I woke up screaming in pain in recovery. I'm hoping for better this time. It can only be better.
I do know that I am giving up control on many parts of my life. And that might be the hardest part. I'm not afraid of pain, I'm afraid of losing my independence. I'm a horrible patient - I am not good at asking for or accepting help. I've worked so very hard to be able to do things myself. And in 36 hours I won't even be able to get dressed by myself.
I've done well this time to keep myself busy enough over the weekend to not have a spare second to reflect on the upcoming week. But as the weekend winds down, and my body screams with pain in response to my over-doing-it this weekend, I am forced to sit and think. It's almost a good reminder as to why I'm going through the surgery - my shoulder is so very sore right now. It's a not-so-subtle reminder that my shoulder is not going to get better automagically, and that this is surgery I need and will appreciate 4-6months from now.
My 6 year old daughter brought me her most prized possession in the world to snuggle with - pink blankie. There is no precedent for this act of love. Chelsea does not give up her blanket. Ever.
For anyone. I guess this further demonstrates the magnitude of my surgery and how it not only
impacts me, but many other people in my life.
I'm on a new music kick, and have discovered Chvrches and their song "Recover". It's about decisions and being at a cross-roads. That's me. At the cross-roads of pain and surgery. I'm really hoping the surgery path works out for me this time.
Sunday, September 22, 2013
Shoulder Surgery - Version 3.0
A couple of people have emailed and asked what - exactly - am I having done this time around and why.
For those reading this as a stand alone post, here is some history. I have had a total shoulder replacement on my left side about 4 years ago, and a partial shoulder replacement (resurfacing) on my right side about two years ago. My right shoulder is in a reasonable amount of pain and with reduced function and range of motion for the past 4-5 months. Back to our regularly scheduled broadcast.
The short answer is I'm having a bone graft. They will take irradiated cadaver bone, crush it up and pack it into my glenoid cavity (socket) and stitch me back up again. A few potential complications, of course. When opening me up, I already have some hardware in my joint as pictured below.
Implants like this do not just "pop" out, as it is secured with bone cement. It wasn't really intended to come out 23 months after it was put in. For a successful surgery it come out to ensure that there is enough room for the surgeon to operate. There is a possibility that it may not come out cleanly, and I will need to have another - larger - implant inserted. I don't really want that, but I may not have a choice. I've been of the opinion that the longer I can keep my natural bone, the better off I will be as I am fairly confident that this will not be my last surgery on this shoulder.
I am about nine sleeps away from surgery. I am starting to feel anxious, emotional and downright afraid. This is fairly major surgery. While I am generally flip with strangers about my disease and my struggles, not the case when all the bravado is stripped away.
I'm trying to listen to happy music this week. I've recently found Grouplove - and this song puts a smile on my face. I've got a "Ways to go" to surgery - but only a little bit longer.
For those reading this as a stand alone post, here is some history. I have had a total shoulder replacement on my left side about 4 years ago, and a partial shoulder replacement (resurfacing) on my right side about two years ago. My right shoulder is in a reasonable amount of pain and with reduced function and range of motion for the past 4-5 months. Back to our regularly scheduled broadcast.
The short answer is I'm having a bone graft. They will take irradiated cadaver bone, crush it up and pack it into my glenoid cavity (socket) and stitch me back up again. A few potential complications, of course. When opening me up, I already have some hardware in my joint as pictured below.
Implants like this do not just "pop" out, as it is secured with bone cement. It wasn't really intended to come out 23 months after it was put in. For a successful surgery it come out to ensure that there is enough room for the surgeon to operate. There is a possibility that it may not come out cleanly, and I will need to have another - larger - implant inserted. I don't really want that, but I may not have a choice. I've been of the opinion that the longer I can keep my natural bone, the better off I will be as I am fairly confident that this will not be my last surgery on this shoulder.
I am about nine sleeps away from surgery. I am starting to feel anxious, emotional and downright afraid. This is fairly major surgery. While I am generally flip with strangers about my disease and my struggles, not the case when all the bravado is stripped away.
I'm trying to listen to happy music this week. I've recently found Grouplove - and this song puts a smile on my face. I've got a "Ways to go" to surgery - but only a little bit longer.
Wednesday, September 11, 2013
True Colours
Deep breath. Here goes.
I haven't been writing lately. I haven't been writing lately as there is a giant black hole of depression just over there in the corner that sometimes feels like it's about to swallow me whole. Other days I'm ok, keep to myself and can work around it. It's been there, on and off, larger and smaller, waiting for me in the corner for the past five months. That's a long time. This is hard to write. I'm still waiting to chicken out and delete this post.
The phrase I've been using is "flirting with depression". I don't know if I'm depressed - that is such a big, big word. I am certainly not happy. I'm sad about many things, big and small. I am more emotional than normal. I want to be alone as much as possible, often regardless of family needs. I am not really talking about it to many people. I am having some good days, bad days, a good month - June - and then several bad months. I'm crying - a lot - sometimes uncontrollably. And other days I feel a version of normal. But it's a slippery slope pulling me back, down and under. The black hole in the corner is ever-present and looking to gobble me whole.
Recent news of my imminent do-over shoulder surgery has really pushed me over the edge. I don't know how to process this set back. I don't know how to name the emotion - and if I can't name it, I can't get over it, around it, through it or or past it. I am surviving - not living, going through the motions without any emotion.
I was inspired to write by this post at Remicade Dream. I know it's not just me whose ass is getting kicked by RA and depression. When I went to write this post, I thought of the song first, and then found the words to write. "True Colours" speaks some of the words that I just can't say right now.
I haven't been writing lately. I haven't been writing lately as there is a giant black hole of depression just over there in the corner that sometimes feels like it's about to swallow me whole. Other days I'm ok, keep to myself and can work around it. It's been there, on and off, larger and smaller, waiting for me in the corner for the past five months. That's a long time. This is hard to write. I'm still waiting to chicken out and delete this post.
The phrase I've been using is "flirting with depression". I don't know if I'm depressed - that is such a big, big word. I am certainly not happy. I'm sad about many things, big and small. I am more emotional than normal. I want to be alone as much as possible, often regardless of family needs. I am not really talking about it to many people. I am having some good days, bad days, a good month - June - and then several bad months. I'm crying - a lot - sometimes uncontrollably. And other days I feel a version of normal. But it's a slippery slope pulling me back, down and under. The black hole in the corner is ever-present and looking to gobble me whole.
Recent news of my imminent do-over shoulder surgery has really pushed me over the edge. I don't know how to process this set back. I don't know how to name the emotion - and if I can't name it, I can't get over it, around it, through it or or past it. I am surviving - not living, going through the motions without any emotion.
I was inspired to write by this post at Remicade Dream. I know it's not just me whose ass is getting kicked by RA and depression. When I went to write this post, I thought of the song first, and then found the words to write. "True Colours" speaks some of the words that I just can't say right now.
Sunday, August 18, 2013
How am I gonna be an optimist about this?
I give up. I'm done. I'm out. I just want to curl up in a ball and cry for a few days. I'm sad. I'm mad. I'm in shock. I'm incredulous that this is my life. A Hollywood tear-jerking drama has nothing on me this week. You really can't make this up.
It's been 22 years of pain, inflammation, doctor's appointments, drugs and that constant knowing that your life is likely a little less because of something you had absolutely no control over. I'm tired. I've lost my fight. It's been a tough 22 years, and I'm just bone-weary tired.
I've got scotch and a sad music on. I spent much of last week working a lot and informing colleagues, family and friends of my impending surgery. To say it was an emotionally draining week, would be an understatement. I'm exhausted. I can't take anymore sad eyes staring back at me as I explain that the shoulder I just had surgery on a mere 21 months ago needs further repair. I feel like I'm talking about a life other than my own. I have a detached third party view - like it's not actually my life. But it is.
It's not the surgery itself that bothers me. It's the mountain of pain, dependence, disability, rehab and feeling like a lesser person that looms behind the surgery date that I'm overwhelmed and saddened by. This isn't my first rodeo. It's my 3rd. Yes, you read that correctly - 3rd shoulder surgery in 4 years. Have I mentioned I'm 38? It's just so unfair. There. I said it. It's unfair. I'm so very angry with the universe. I'm not ready for the "silver linings" conversation. I'm not interested in being happy or seeing the bright side of things right now. I just want to wallow. With a giant bottle of scotch. Beautiful 16 year old Glenlivet. Not a long-term solution, but this week it seems to be doing the trick.
I'll pick myself up. I always do. But for now, I just want to be sad. I was trying to find the most melancholy and gut-wrenching song to attach to this post. But over the weekend I found some lyrics and a song that sum up my situation. Bastille's "Pompeii" where they ask "How am I gonna be an optimist about this?". Excellent question. I haven't figured out the answer yet.
It's been 22 years of pain, inflammation, doctor's appointments, drugs and that constant knowing that your life is likely a little less because of something you had absolutely no control over. I'm tired. I've lost my fight. It's been a tough 22 years, and I'm just bone-weary tired.
I've got scotch and a sad music on. I spent much of last week working a lot and informing colleagues, family and friends of my impending surgery. To say it was an emotionally draining week, would be an understatement. I'm exhausted. I can't take anymore sad eyes staring back at me as I explain that the shoulder I just had surgery on a mere 21 months ago needs further repair. I feel like I'm talking about a life other than my own. I have a detached third party view - like it's not actually my life. But it is.
It's not the surgery itself that bothers me. It's the mountain of pain, dependence, disability, rehab and feeling like a lesser person that looms behind the surgery date that I'm overwhelmed and saddened by. This isn't my first rodeo. It's my 3rd. Yes, you read that correctly - 3rd shoulder surgery in 4 years. Have I mentioned I'm 38? It's just so unfair. There. I said it. It's unfair. I'm so very angry with the universe. I'm not ready for the "silver linings" conversation. I'm not interested in being happy or seeing the bright side of things right now. I just want to wallow. With a giant bottle of scotch. Beautiful 16 year old Glenlivet. Not a long-term solution, but this week it seems to be doing the trick.
I'll pick myself up. I always do. But for now, I just want to be sad. I was trying to find the most melancholy and gut-wrenching song to attach to this post. But over the weekend I found some lyrics and a song that sum up my situation. Bastille's "Pompeii" where they ask "How am I gonna be an optimist about this?". Excellent question. I haven't figured out the answer yet.
Wednesday, August 14, 2013
You've got to be kidding me.
It's been months. Again. And it's been a tough couple of months for me. I've been avoiding the keyboard, thinking that once there is a crack in the dam, it's just going to all come out. One giant rush of pain and emotion. So here's my best effort to say what I need to say and keep the dam intact. I feel like I have to start somewhere...
On the plus side, I've been running and biking. Feel strong, great - sporty, even. The downside is my right shoulder has become incrementally increasingly painful, sore, swollen and less usable.
The tipping point for me was washing my hair. One day, I couldn't manage to raise my right arm high enough to wash my hair. This is the same arm that I had a partial shoulder replacement done about 20 months prior. And I found myself crying in pain and frustration in the shower in the middle of June. Sobbing, really. It's funny how joint mobility is a slippery slope down, until one day you realize "Wait a second, I used to be able to do that". And now you just can't because it simply hurts too much.
Back to the surgeon I went in late June, and I took my 8 year old son this time. I'm slowing trying to introduce him the medical side of my life at an easy, "it's no big deal", introductory rate. It was also an insurance policy - I was less likely to break down at what was likely to be some pretty crappy news if Patrick was with me.
We met the surgeon, went for x-rays, bloodwork and met the surgeon again. X-rays showed bad news - the glenoid (socket part of my shoulder) has further eroded and thinned since last x-rays.
Taking a step back - I only had a partial shoulder replacement in November 2011 because there wasn't enough bone there to attach a plastic piece to make a "total" shoulder replacement to my socket (glenoid). So, to find out that the bone is thinner only two years later is really, really bad.
There is also an outside chance of infection which would case all this pain as well, hence the bloodwork and a date with radiology to aspirate cells from my shoulder. The plan being rule out infection, and then we can look at what's left.
I've had dozens of joint injections in various locations over my 22 years with RA. They are slightly uncomfortable, but they offer the benefit of lovely steroids going directly into your joint helping with pain and inflammation. I've never actually had cells pulled out of my joint before, but I assumed the process was somewhat similar.
Oh. Dear. Was I ever wrong. Possibly the most painful medical procedure that I've been awake for to date. And I've had two c-sections. Two large needles, into which six smaller needles were inserted reaching to my shoulder to get cell samples. Stay still. Don't move. Don't scream. And pray that the local anesthetic works well enough. Those are 20 minutes of my life I'm happy to never re-live. It was absolutely horrific. And the best I could do was cry silently and apologize to the radiologist. Apologize, why? I don't know. I'm Canadian. I generally apologize for things that are not my fault.
And cue family vacation the day after this procedure. I didn't feel too bad directly after, but the following couple of days I just fell apart. My shoulder screamed in pain and I didn't bring any good meds (read: narcotics) with me to help. I took the max doses of Tylenol and Ibuprofen, but it wasn't enough to control the pain. Finally, we were in a larger town and I bought Tylenol 1's from the pharmacy, which seemed to help. I'm now a registered narcotics user in the province of Prince Edward Island. Super.
It's been a long time since I've been in this much pain. I'm accustomed to stiffness, swelling, being sore - but actual acute pain? It's not something I'm used to. And narcotics? I've been a prolific anti-arthritic and anti-inflammatory drug user for the past 22 years. And codeine? That scares me. I'm not used to narcotics and I'm not comfortable with them.
I just can't believe I may have to have another surgery. It hasn't even been two years since the last one. How am I not done with all of this yet? I've done my time, clearly.
I've been listening to a lot of new music this summer and attending outdoor concerts. I've seen Macklemore & Ryan Lewis, Imagine Dragons, Tegan & Sara, Jimmy Eat World (twice!), Dixie Chicks, Wheezer (best show) and The Black Keys. It's been a great summer - musically. Right now, Imagine Dragon's "Demons" is speaking to me the strongest. I have demons from the past coming back to haunt me. More surgery. More pain. More of the same. When does it end?
On the plus side, I've been running and biking. Feel strong, great - sporty, even. The downside is my right shoulder has become incrementally increasingly painful, sore, swollen and less usable.
The tipping point for me was washing my hair. One day, I couldn't manage to raise my right arm high enough to wash my hair. This is the same arm that I had a partial shoulder replacement done about 20 months prior. And I found myself crying in pain and frustration in the shower in the middle of June. Sobbing, really. It's funny how joint mobility is a slippery slope down, until one day you realize "Wait a second, I used to be able to do that". And now you just can't because it simply hurts too much.
Back to the surgeon I went in late June, and I took my 8 year old son this time. I'm slowing trying to introduce him the medical side of my life at an easy, "it's no big deal", introductory rate. It was also an insurance policy - I was less likely to break down at what was likely to be some pretty crappy news if Patrick was with me.
We met the surgeon, went for x-rays, bloodwork and met the surgeon again. X-rays showed bad news - the glenoid (socket part of my shoulder) has further eroded and thinned since last x-rays.
Taking a step back - I only had a partial shoulder replacement in November 2011 because there wasn't enough bone there to attach a plastic piece to make a "total" shoulder replacement to my socket (glenoid). So, to find out that the bone is thinner only two years later is really, really bad.
There is also an outside chance of infection which would case all this pain as well, hence the bloodwork and a date with radiology to aspirate cells from my shoulder. The plan being rule out infection, and then we can look at what's left.
I've had dozens of joint injections in various locations over my 22 years with RA. They are slightly uncomfortable, but they offer the benefit of lovely steroids going directly into your joint helping with pain and inflammation. I've never actually had cells pulled out of my joint before, but I assumed the process was somewhat similar.
Oh. Dear. Was I ever wrong. Possibly the most painful medical procedure that I've been awake for to date. And I've had two c-sections. Two large needles, into which six smaller needles were inserted reaching to my shoulder to get cell samples. Stay still. Don't move. Don't scream. And pray that the local anesthetic works well enough. Those are 20 minutes of my life I'm happy to never re-live. It was absolutely horrific. And the best I could do was cry silently and apologize to the radiologist. Apologize, why? I don't know. I'm Canadian. I generally apologize for things that are not my fault.
And cue family vacation the day after this procedure. I didn't feel too bad directly after, but the following couple of days I just fell apart. My shoulder screamed in pain and I didn't bring any good meds (read: narcotics) with me to help. I took the max doses of Tylenol and Ibuprofen, but it wasn't enough to control the pain. Finally, we were in a larger town and I bought Tylenol 1's from the pharmacy, which seemed to help. I'm now a registered narcotics user in the province of Prince Edward Island. Super.
It's been a long time since I've been in this much pain. I'm accustomed to stiffness, swelling, being sore - but actual acute pain? It's not something I'm used to. And narcotics? I've been a prolific anti-arthritic and anti-inflammatory drug user for the past 22 years. And codeine? That scares me. I'm not used to narcotics and I'm not comfortable with them.
I just can't believe I may have to have another surgery. It hasn't even been two years since the last one. How am I not done with all of this yet? I've done my time, clearly.
I've been listening to a lot of new music this summer and attending outdoor concerts. I've seen Macklemore & Ryan Lewis, Imagine Dragons, Tegan & Sara, Jimmy Eat World (twice!), Dixie Chicks, Wheezer (best show) and The Black Keys. It's been a great summer - musically. Right now, Imagine Dragon's "Demons" is speaking to me the strongest. I have demons from the past coming back to haunt me. More surgery. More pain. More of the same. When does it end?
Tuesday, April 30, 2013
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.
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.
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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