Sticks & Stones

RA vs BBQ

2012-01-13T21:49:00.000-08:00

It's a bit of a mystery, where and when my next swollen joint will appear. My knee? Left or right hand? Elbow? Wrist? Which one? The suspense is killing me. No, check that, it's the pain that is killing me, not the suspense.

Lately, I have had "classic" red, swollen joints which appear late in the day and sometimes disappear when I wake up. Sometimes not. In the past week, I've experienced, my left wrist, my 3rd and 4th MCP on both hands, my left knee and the list goes on. You just never know where RA is going to be when the music stops.

I know RA is characterized by swollen, red joints and I do have those, but mine are typically more of a slow burn, where there is enough inflammation and pain to make itself known, but not enough to cause a full-blown flare. I've had this for 20+ years.

I've always had a hard time at my Rheumatologist's office when they ask how I am feeling. I think so much of this answer is tied up to your personality and disposition. I tend to be happier and err on the side of positive, so I am usually "OK" which actually tells my health care team zilch. But usually it's true.

I read fellow bloggers posts about an onset of a flare, or being in a flare. I've never really termed my RA in that manner. I have moderately active joints, that flare up one at a time every now and then. I could say I've been flaring for 20+ years, at a slow and steady rate - like good BBQ. I have some flare ups, but for the most part, my damage and pain comes from years of low-grade inflammation.

Wow, did I just compare RA and BBQ? Hmm, well its one of the better analogies that I've used to illustrate a patient's perspective. And it's -24 C with the windchill with 10 cm of snow falling today here in Ottawa, so Summer sounds good right about now.

Along these crazy lines - BBQ, summer, music. Well, one can only refer to the Canadian Icon Brian Adam and the Summer of 69. One of the best Canadian rock songs ever. You can't help but smile and rock right along.

Victory Lap

2011-12-23T08:30:00.000-08:00

It's been a super year and I'd like to take a victory lap. I've conquered lots of obstacles, and I'd like to share.

On the arthritis side - I am off prednisone. For those who have been reading for a while, feel free to celebrate right along with me. That sentence is enough of an accomplishment that I could stop right there. But wait, there's more! I have had some shoulder surgery (humeral head replacement) to get some pain relief. It was a bit of process to get there, and I am now feeling just great. I am on Actemra and that is all. My drug list is down significantly, I'd say!

One of the harder things for me to write this year was a profile for RA Guy's "Real Profiles of RA". It's an insightful section to his amazing web site, where folks like me with RA from around the globe submit pictures and write about their RA experience. It was hard to answer "How has living with RA helped to improve your life?" Umm, it hasn't. And I left my draft at that for about 4 weeks, but it was peculating the background.. It's easy to see what it has taken away from me. It's harder to see the positives. I eventually found my answer, but it was instinctive for me to get there.

I am married to a hockey fan, and John was telling me about 24/7 - HBO is following two hockey teams behind the scenes leading up to the outdoor Winter Classic hockey game. Ok, all this to say the Philadelphia Flyers listen to "Knock Knock" by Mac Miller when they win. I've had a super year, so this is my victory song! Wishing everyone a wonderful Christmas and a health-filled New Year.

Oh, the irony

2011-12-15T01:54:00.000-08:00

You have to have a sense of humour when you have a chronic disease. You have to be able to laugh at yourself a little. And you have to have someone in your life that can lift the mood.

It's too bad it's 3 in the morning, and my husband is sleeping, because I could use a laugh right now. I am recovering from shoulder surgery on my right side, I am relying heavily on my left arm. Wouldn't it be funny if my left wrist puffed up like a balloon, and didn't work properly? That would be just freakin' hilarious. John would have a witty, sarcastic one-liner that would make me smile, and then he would help me get dressed and do my hair. He is a very patient man, as I have long curly hair and strong sense of independence. It doesn't usually go well for either of us.

To add fuel to this fire of inflammation, that is happening right now, a mere 10 sleeps before Christmas. Don't get me wrong, having shoulder surgery November 1st provides significantly fewer expectations on Christmas, but there are some minimum standards I am hoping to meet. Like presents for everyone on the list.

Just when I was getting my sea legs under me and starting to drive myself around, it seems my body has other ideas for me, as usual. But the irony is not lost on me. If you only have one arm, then let's have a flare in a pivotal joint, just for fun. The other irony is the first thing I think to do while not able to sleep due to the pain and discomfort, is write a blog entry thus using the wrist that is screaming in pain. Oh, the irony.

There is a very fitting song to go with this post, from a fellow Canadian - Alanis Morissette's "Ironic". Yep, this is pretty ironic.

Ouch

2011-12-06T18:30:00.000-08:00

I'm alive. The surgery went well, and I am the proud new owner of a resurfaced shoulder. From an Orthopedic perspective, it went very well. From an Anesthesia perspective, it couldn't have gone worse. OK, check that, I guess that I could have woken up during the procedure but other than that it was an absolute failure.

My nerve block didn't work at all. At all. So I woke up in recovery in excruciating pain. Anyone who has been in the hospital for an extended period of time will laugh when I say my pain was a 12 on 10. Seriously, it was the worst pain of my life thus far. And it took several hours for it to be under control. It's hard to chase pain and get on top of it.

To top off my experience, the nursing staff was not very kind. I was upset and didn't understand why my nerve block didn't work, and the comment I was given was "Would you rather have your surgery delayed?". As if that was the only choice. Surgery now and no nerve block. I shudder to think that is how some people relate to others. I am younger and stronger than most of the patients through the recovery room - other less strong and strong-willed would have actually bought that line.

I had asked for a nerve block with a pump and catheter. In the end I had a needle that missed the mark and didn't provide any pain relief whatsoever. Clearly my expectations were not met. But after one horrible day, I was feeling better and on a morphine pump. Five days later, I was on Extra-strength Tylenol and a Percacet at night. Not bad. Now, I'm on nothing.

I listened to my iPod at nights to drown out the noise in the hospital. It was my Dance/Rap mix - Nicki Minaj, Jay-Z, eminem, Lady Gaga, Brittney. It was mostly upbeat noise that was better than the hospital sounds. I can't bring myself to link Nicki Minaj in this blog so I'll go Martin Solveig featuring Dragonette and Hello. A happy song about nothing. Just what the doctor ordered.

One Arm Bandit - One Day to Go

2011-10-31T18:03:00.000-07:00

Last Friday I went through the day with one working arm and one kinda-working arm. I drove with one arm, I carried the groceries with one arm, I cooked with one arm, and I supported the other arm when typing. C'mon - let's get our priorities straight.

My arm burned, screamed, and was grating. That is a horrific sound that I don't wish on anyone. And for the past week or so, whilst I've been two armed - my shoulder hasn't gotten much better. So on the eve of my surgery it seems appropriate that I am reflecting on the use of one arm, because as of tomorrow at about noon, when all is said and done and the last stitch is in, I will be a one-armed bandit. In a sling. In a drug-induced stupor. In the hospital. Lovely.

I was joking with my dad today while I was putting my jacket on. I was saying that tomorrow there will be many things that I can't do. As I pulled my right arm through my jacket - I screamed. And smiled. As to illustrate my point further. We laughed, but man oh man, that one hit a little too close to home.

So I've scrubbed every inch of my shoulder and about 6-8 inches in every direction from there on out with this horrid antimicrobial soap. Actually, calling it "soap" is being kind. It had a scrub brush on one side and foam pad on the other. With no clear direction, I scrubbed with both sides. My poor shoulder. And I have to repeat tomorrow morning. Between this and the vats of iodine that they will slather on my "shoulder area" (read: neck to elbow to breast bone and all places in between), my skin is going to be a wreck. I guess that's the least of my concerns.

I have mixed feelings. I want the pain relief that I know surgery will bring, but I don't want the 4-6 months of compromised mobility, rehab, pain and frustration.

The song that I've been thinking about lately is Beautiful Day by U2. It doesn't really make sense, except that the outpouring of love, concern and friendship leading up to my surgery has been wonderful. The rest is really going to suck, but I've made some wonderful friends over the past year, held onto my old ones and can feel the love. That makes it a beautiful day, no matter what.

T-Minus 14 Days

2011-10-17T20:09:00.000-07:00

My iPad says 14 days to go. Really it's 13 days and about 1 hour. But who's counting.

I am constantly aware of the clock, the date and what I need to do. I am rushing at work, trying to tie up all the loose ends. I am busy at home, but not really scratching the surface of what I really need to do. I'm exhausted. I'm stressed. My blood pressure at my pre-op appointment was 157/91. Yikes. Normally that is much lower.

I know what to expect. I know about the pain. I know about the nerve block tube in my neck. I know about the night sweats. I know about the messy hair and "discussions" with my husband about my ponytail. I know about the scar. I know about the pain. I know about the "what happened" questions of concern from those who care and those who are nosy. I know about the pain. It doesn't mean that I like any part of this one bit.

Somehow all this knowledge is not offering any comfort. Somehow, this time doesn't seem to be any easier than last time. Somehow, facing another shoulder surgery, I am still scared. I can plan all I want, I can think I am prepared. But I am not. I am just as afraid as last time.

I have been brushing off comments of concern from family, colleagues and the kids with reassuring them that I will be provided with world-class narcotics and that will solve all of my surgery pain. But sometimes, there is pain that you can't take medication for. I am having my shoulder resurfaced. I can't have a Total Shoulder Replacement as I have too much joint damage. This sucks. This really, really sucks.

I have always loved the music of U2. At various stages of my life, their music has offered different meanings. I was listening to a broadcast of the Clinton Foundation concert, and I heard another version of "I Still Haven't Found What I'm Looking For". To me, today, this song resonates of me searching for the comfort I thought I might find in repeating a surgery. But I still haven't found what I'm looking for.

I'll take and IV and a 10 Blade

2011-10-05T20:21:00.000-07:00

Given my medical history, I'm not all that squeamish. I've had dozens of joint injections, a total shoulder replacement, monthly bloodwork for years on end, two babies and a knee scope. For the most part, I've been there and had that done for everything RA and baby related.

So why, when I was watching Grey's Anatomy last Thursday, was I squeamish when Meredith asked for a "10 blade" and was cutting someone open? A "10 blade", according to Wikipedia, is for "cutting skin and muscle in surgery". Well, I should just stop reading right there. Internet research, as everyone knows, is not always in your best interest. Like the time I was looking for more information on Shoulder Replacement Surgery and came across a video. I should have just stopped watching, but it's like a train wreck.

I'm going for an IV infusion tomorrow of my Actemra. I'm very excited about my new IL-6 blocker Biologic. As with most companies that sell Biologics, there were some helpful staff at Roche available from 8:00 am to 8:00 pm to help with my questions. For $24,000 a year in treatment costs, they are quite willing to work with my benefits company to get it paid for.

While I'm writing in a fairly cavalier manner, in truth I am nervous - anxious - jittery about all this. I am going to sit in a treatment centre with an IV in my hand for 60 minutes while fancy expensive drugs run through my body. I calculated that the drug costs $33.33 per minute. Silly calculations are the things you do when you are jittery. Drinking scotch is the other. Check and check.

I can see myself moving into pre-surgery behaviour. I am making plans so my schedule is full. I am checking and re-checking details for no apparent reason, and I have 27 days to go before someone asks for a 10 blade to use on me. I have an app set up on the iPod to countdown the days. There's an app for everything.

Not to put too fine a point on what's happening in 27 days, but I am having major surgery. For the 4th time in my life. I'm 36. Right. Where's that Scotch?

A colleague and I were talking music and concerts we've been to, and REM came up. I love REM. I went to see REM in Ottawa in 2005. Their song "Everybody Hurts" has applied to everyone reading this, at some juncture in their life - so I'll hold on and make it through this.

I Hate Stairs

2011-09-25T19:50:00.000-07:00

I can almost see my parents smile when they reads the title of this post.

"I hate stairs" was one of the phrases that started my RA journey. I was 16 when I was diagnosed and I was in a high school with two floors and no elevator. When I was flaring it would take extra time to get to class, and usually I would wait for all of the kids to be in class before I started to one-step it up the stairs. I didn't want the attention. My teachers knew that I was recently diagnosed and gave me some latitude in getting to class on time.I remembered that my science teacher called my "creaky".

So, I'll stop denying it now - I am flaring. It hurts. I am in between Biologics and it's showing. I am returning to my full-flare tricks and habits. Shuffling after I get up from a chair, loathing stairs, looking for the elevator at work - even though it is at the opposite end of the building. Un-bending my fingers in the morning as they have curled up overnight.

I went for a walk with my four year old daughter in Gatineau Park , and we picked Pink Lake to walk around (she, of course, likes pink). The start of the trail is on a lookout and you walk down some stairs to get to the trail. I walked down fours steps and started to cry. I just couldn't do it. The ups and downs of the trail leading there had been enough and my knees were screaming. And Chelsea said "Momma, what's wrong?" I said that mommy's knees hurt like her shoulders hurt and I didn't think I could walk down the stairs. She said "That's OK. We can go back to the car. I love you."

I feel so bad. She's four and her life will be shaped by a mom that can't do stuff. Already, at four and six, my kids know that daddy can carry them and mommy can't and that mommy's shoulders hurt. And mommy is going to the hospital to have her other shoulder fixed.

And the positive voice in my head says that I have many other attributes and abilities. Kids are resilient. They will grow up to be more empathetic adults. They will see past disabilities.They will be more caring. This is what I hope for.

Probably a bad choice, but I'm wallowing a little and so I am listening to Adele's song "Someone Like You". Powerful song with only Adele and a piano. It's coming to terms with a breakup, about moving on. Bittersweet, like my day today.

Arthritis of the Heart: A post from my Dad

2011-09-14T19:19:00.000-07:00

Hi. I am Megan’s father.

I have Arthritis of the Heart.

This is a chronic ailment.

There is no known cure.

There is no medication to ease this pain.

This location of my arthritis is at the intersection of mylove for Megan and the helplessness I feel.

When Megan was 16 years old she was a jock – basketball; volleyball;outdoor education with its rock climbing; spelunking; canoeing; swimming andfitness requirements.

When Megan was 16 years old she came upstairs one day andsaid – “Dad, my feet hurt.” That statement was the start of her arthritisjourney.

As Megan’s father I felt that I had failed her. As herfather it is my responsibility to protect her from danger as she grows up. Ifelt helpless that I could not stop her from having arthritis. It’s irrational– I know. But a father’s feelings aren’t always rational. I wept for mydaughter’s pain.

Fast forward 20 years.

We have both learned more about arthritis and each otherthrough Megan’s non-stop journey.

I now know that for every person who has arthritis there aretwo or three more people who have Arthritis of the Heart. We are the people wholove the people with arthritis.

As long as Megan has her arthritis – I don’t want to becured of mine.

Sometimes, you can get what you want...

2011-09-05T19:49:00.000-07:00

When I was young, and things didn't go my way, my dad would sing, with a smile on his face and a twinkle in his eye, the famous Rolling Stones song, "You Can't Always Get What You Want" . Even as a young child, I knew that I couldn't get what I wanted. But that didn't stop me from trying.

But this time, in this particular situation, I got what I wanted, and man - I worked for it. I have a date for my surgery and I am getting the procedure for my right shoulder that I want. I feel the need to clarify that this is my right shoulder, as I already have some hardware in my left shoulder.

I am having a shoulder resurfacing hemiarthroplasty, and my hardware will look like this when I'm all done. I can't have a total shoulder replacement, as mentioned in previous blogs, as I don't have enough bone in my glenoid to hold a prosthesis. So what they can do is shave down the humeral head, and then a metal cap with a spike to secure the prosthesis will be implanted. Think of a large, shiny tack being inserted into my shoulder. Don't worry, I'll be well medicated.

I am releived to have a date, something to focus on and plan towards. I am not afraid of the surgery and have an expectation of what the pain will feel like and what the recovery time will look like. I'm ok with all of this. And I got what I wanted. I mean, who really wants a shoulder replacement? Well, I do.

Shiny. Happy. Me?

2011-08-23T19:37:00.000-07:00

Nothing makes you reflect more than a personality typing profiling with 15 managers from the Ontario locations for my work, and we started with the DiSC typing. I'm an "I" - Influencer. I was the only one in the room. My general characteristics include "Enthusiastic. Trusting. Optimistic. Persuasive. Talkative. Impulsive. Emotional".

Enthusiastic? Optimistic? Well, not the me you know from the recent entries in this blog. I'll be the first to admit I've been downright depressing. But at work, I am that bubbly, friendly, optimistic, helpful, talkative person - I'm the classic HR person. You want to drop by my office because I will make a joke, make you smile, solve a problem and send you on your way. I am also serious when required - hiring, firing and providing advice to managers on how best to manage the myriad of unique issues that arise amongst the teams.

Trusting? Yep, almost too much, to my detriment. I believed everything everyone had to say. Doctors, colleagues, "friends". I'm a bit more experienced, jaded, savvy. I trust my doctors, but need to understand the information for myself. I want to research topics, procedures, protocols, medication for myself, and have an intelligent conversation with my doctors.

Emotional? You betcha. I run the extremes on emotion. I am ecstatically happy, or despondently sad. I cry over many things. I have sobbed over health related news. I have laughed with tears in my eyes at the crazy antics of my kids. I have shed tears over commercials, songs, thoughts and scents that took me to a place of sadness. I have cried writing entries in this blog as a form of catharsis for my emotions related to this illness.

Talkative? Yeppers. I am well spoken, and I believe well-written. In the discussion today, "Talkative" was used to describe a strong and confident communicator. That is true for me. I know my mind, can communicate my thoughts effectively and can understand where others are coming from. I get my energy from others. If I have a problem, I talk it out. I want to go for coffee, dinner, drinks with friends. I am social and outgoing. Really.

Odd, after re-reading my recently depressing postings, I'm afraid I haven't presented a balanced view. Or maybe I can be so happy in my daily life as I have left all the anger and negativity in my blog. I like to get things out. I like to clear the air. I post when I have something to say, good or bad.

Today, is a good day. And here is a happy post.

I had a frustrating week last week at work. Part of my role is recruiting new team members. Three open roles that I had filled wound up re-opening for various reasons. I was driving into work, after two bad days of stewing over this in a rather unproductive manner, and heard Whitesnake's "Here I go Again". Awesome! "Here I go again on my own, goin' down the only road I've ever known". While this is a sappy, big-hair rock band song about looking for love, it spoke to me about my work challenges last week and immediately lifted my mood.

Here I go again, recruiting. Here I go again, talking to doctors. Here I go again, getting a shoulder replaced. Here I go again, goin' down the only road I've ever known.

End Game

2011-08-17T17:05:00.000-07:00

Here's the thing I've been thinking about lately... where does this all end? Where will I be in 20 years? 40 years? 60 years,when I'm 96? Will I ever be 96? How will I feel? How bionic will I be? Should I call Vegas so they can take bets?

I can't say I think about the future. I am too focused on the here and now. I have two school-aged kids, a full-time job and life is busy. I am focused on the next doctor/surgeon/rheumatologist appointment, play date, girls night out, shopping trip, even the next hour - too preoccupied to look too far into the future.

I see into next week with the family calendar. I know I will see my surgeon next week and talk about my shoulder replacement options, and don't forget Patrick (my son) has a playdate with his BFF Finn. But what's happening in November, December, January 2012 - who knows?

I need shoulder replacement surgery. That will (hopefully) happen in the next 3 to 9 months. But I don't really know where (Ottawa or London, Ontario), when (October or January or April) or which procedure (Reverse Shoulder, or a Humeral Head resurfacing or a traditional stem, which I don't want) will take place.

I am happily oblivious to all of this uncertainty. I don't really want to know. It's not a happy story. I'm not sure I live happily ever after. I think, in all honesty, I will live in a moderate-pain, medication and surgery filled future. It sounds bleak, but I think that is what is going to happen.

Just think how happy I'll be if my expectations are exceeded. But I'm not sure they are going to be. A friend at work reminded me of The Cure's song, "Just Like Heaven". It's a song that you listen to on repeat for an hour or two and think about things, as I have been.

I think the future looks more grey than sunshine and roses. I have had RA for 20 years, and I know how I feel about the mental and physical aspects of the disease. It's painful and exhausting. It's not good. But it is liberating to write about and share with other who just might understand where I am coming from. And maybe, just maybe, the sunshine will make it through the clouds of my future.

This could really be a good life

2011-08-10T18:41:00.000-07:00

A good, good life. I've found some insight/inspiration from the song The Good Life by One Republic. Take a listen if you have a minute. It's a balanced song about how you have a good life and could have good life. I feel I am walking that balance. Have and could have. Have and have not.

I have a good life. And I have had RA for 20 years.

"When you are happy like a fool, let it take you over, when everything is out, you gotta let it in." (The Good Life)

I think I've had a hard time taking it in, my good life. I think I see all that I have lost and not all that I have gained. I emailed RA Guy about completing a submission for his "Real Profiles of RA" and I got stuck on his question "How has living with RA helped to improve your life?"

Well my first reaction is that it hasn't. RA has had the exact opposite impact on my life. I have a lot of regret about the path that I am on. I think through this blog, I am discovering that I am still looking back to 20 years ago wondering how different my life would have been without RA. And I can only see all that it has cost me. I had a hell of a time finding my silver lining. I admire many of my fellow bloggers for coming to terms with their RA and having a positive attitude about it, and then sharing with others. That takes energy that I don't have yet.

I have a positive outlook on most of my life, but this seems to be some dark corner in my life that I am still so angry about. I have a laundry list of complaints, and I can't seem to get past, around over or under them.

So here lies my negativity, in my blog. This is a tidy place to keep it. It doesn't interfere with my daily life, and I have an outlet. And I feel better. So thank you for listening. As I've said before, this blog is a one-way conversation for the most part, and it is immeasurably beneficial to me.

Pain. Perseverance. Patience.

2011-07-11T19:23:00.000-07:00

I love alliteration. I've been a 2-month mission to find some answers for my shoulder, and it ain't over yet...

Pain. This is where the journey started. My shoulder ranges from screaming sharp pain when I reach too far to grating pain when I over-use it to simmering pain at the end of a long day. It hurts - a lot at time. So I need to take care of my shoulder and me.

Perseverance. I went to London, ON today to see a recommended doctor at the Hand and Upper Limb Centre at St. Joseph's Hospital. To clarify, that is about 616 km one way from my home in Ottawa. A bit of a trek, but I am in need of a second opinion for my shoulder surgery. This is a pivotal surgery for me (and my shoulder) and I want to have options, and then choose the best one.

Patience. We waited 2.5 hours to see the doctor. We spent 30 minutes with him - he is a shoulder specialist in Orthopedics. We had a great conversation. He looked at my films, my CT scan and had a great chat. I was dressed in a turquoise tube-top type hospital gown so he could see my shoulders. Very becoming with my periwinkle blue pants.

The short answer, is that he agrees with my Ottawa doc and I need to have a hemiarthorplasty, or a humeral head replacement. The big difference between this doc and my Ottawa doc, is that he goes above and beyond to explain what he is talking about and offering solutions. My Ottawa doc answers the questions asked, and no more. It's like squeezing the last bits of toothpaste out. Painful and almost fruitless.

The London doc mentioned two alternatives to a traditional "stem" that they implant as seen in my shoulder below:

He suggested either a "cap" on my humeral head (joint resurfacing) or a stem that could be used for a humeral head and a glenoid. Cool! But I couldn't help but think about Transformers when he was talking about the reverse replacement joint. Transformers - "more than meets the eye". Same could be said for a reverse shoulder replacement.

All this to say I have some choices, I have some hope, and I have some more questions.

Reconstruction & Replacement

2011-06-08T19:09:00.000-07:00

There is a very long list of things I didn't imagine myself doing in my life. Somewhere on the list is searching for a surgeon who could reconstruct my shoulder and then replace parts of it.

I've had lots of lows since Friday, when my surgeon let me know, in a rather tactless manner, that I am not able to have a full replacement as I have lost too much bone in my glenoid fossa to implant a plastic prosthesis. I can have half of a replacement, but not entirely what I need. I've cried, I've raged and I am still quite mad. I haven't found my silver lining just yet, but I'm coming around slowly.

What I am on the hunt for, is a surgeon who can graft some bone to my woefully thin glenoid fossa, replace my humeral head, and then insert a plastic prosthesis onto the grafted bone. Done and done. If only it were that easy.

What about my current shoulder guy? Hasn't done this kind of surgery and said that he would have to research. I'm not too keen on being anyone's guinea pig.

I started with my extended family - there is a nurse, doctor-in-training and a pediatrician in the family and I asked them to email whomever they could to ask for referrals and recommendations. I then went to Google and looked at surgeon's profiles. Found three names who specialized in shoulder surgery in the Toronto area, and emailed them. To my surprise, they all replied. One had a name. My family heard back from a few people and the same name came up. He's in London, which is about a 7 hour drive from Ottawa. But I found someone.

So I called his admin assistant on Monday. Lovely lady. I don't know if doctors understand how a really nice, kind, sympathetic and friendly admin assistant can make such a difference in overall patient care. She said that he may be able to do my kind of surgery. I have a referral to a doc who may be able to help me and I have some hope.

I have always consciously or sub-consciously advocated for my health. Thank God I don't take things lying down, otherwise I would have take shoulder guy here in Ottawa at his word and been left with half of a replacement. I'm a fighter and always will be.

I've been listening to If I Die Young by "The Band Perry". The song is about a young person coming to terms with a shortened life. In a way, I continue to come to terms with how my RA has affected my life. I think my shoulder is another hurdle in a rather long marathon.

Stupid Shoulder

2011-06-04T08:27:00.000-07:00

I had a pretty tough day yesterday. I went to see my shoulder surgeon, following up from my CT scan. Indeed, I need my shoulder replaced, but it seems that they can't complete a full replacement as there is not enough bone left to adhere the plastic glanoid piece to.

I am so upset, mad, sad, grieving, and emotionally drained. How did this happen? I have been under an orthopedic surgeon's care for 2.5 years, and somehow, this slipped past.

Some history: I had a consult in December 2008 to determine both shoulders needed to be replaced. I opted to have my left shoulder replaced, and that happened in May 2009. At my 6 and 12 month follow up, I asked about my right shoulder, and my surgeon said to wait, and let my left shoulder settle.

Finally, at my 2 year follow up, it was me who reminded him that I needed my right shoulder replaced. I know he sees thousands of patients, but I think he has some level of responsibility. If I hadn't driven this, who knows where it would have gone. So, as it turns out, my shoulder deteriorated at an extremely rapid rate and in the short space of 2 years, I can't have a full replacement, which means many revisions and more pain and a fairly unknown future.

Wanna know how to clear your consult room? Start crying and see how quickly the surgeons need to return calls. In my case, they both left within a minute. Poor guys, they just didn't know what to do or say.

Actually, I didn't either. And I still don't.

I give

2011-05-11T19:25:00.000-07:00

Ok, ok, I give, I give. I am not superwoman, I am a mere mortal. I am not impervious to the rampant RA that runs amok in my body. As much as I might want to pretend.

The other day, as I was creaking my way around getting ready in the morning, and I paused to grimace and thought about what I was trying to prove to whom. I am stubborn. I rise to a challenge. But this was kinda stupid. I was in pain, getting more inflamed by the day for what reason, exactly?

I tried to go off Humira and MTX to see if they were working. Well, it seems they are doing something. I am not as sore as quickly as I thought I would be. But things are starting to deteriorate at a rapid rate these days, which is 8 weeks since I started my hiatus. I can feel my left elbow and right shoulder grinding. That can't be good. As of tonight, I am back on the wagon and will be faithfully taking my meds.

At my next rheumatologist appointment, I'm not sure what to say. Humira was doing something, but I think could do more. I'd like to try another drug. I don't want to settle for feeling "ok". I find it somewhat reassuring that I still have some fight left in me. It's been 20 years. I've had RA more of my life than I haven't. It has so clearly defined me, I can't extract it. But I want to have a better state of health. And I have some hope that there is a drug combination with some wholesome food and some exercise that can help me get here.

One day, I'd love to have nothing to blog about. How's that for a goal?

Continuing my "music as therapy', I'm listening to "Somewhere Over the Rainbow" by Isreal "IZ" Kamakawiwo'ole. Somewhere over the rainbow, there is a state of better health for me.

An Experiment

2011-04-11T17:23:00.000-07:00

I had a rather interesting visit with my rheumatologist in March. I had two primary objectives.

1 - Get a referral for a CT Scan of my right shoulder (the one that is not replaced yet) so that at my 2 year appointment with my surgeon, the scan would be there and I could happily book the next surgery - soon. Mission: Accomplished.

2 - Talk about Humira and how it may/may not be working for me. Dr. K was not so supportive. He, essentially, was wondering pointing out that I am not flaring, so why change meds. How did I know how much Humira was working for me and how did I know that another drug would work for me? Good points, but no new TNF blocker. Mission: Not Accomplished.

Dr. K. did leave me with an experiment to try. His idea is that I won't really know how much Humira was working until I was off it. So he suggested that I go off of it and see how I felt, as it is fairly fast-acting and I could go right back on it. The idea is not to be off for too long, as it seems (according to research) that it is better for me to be on a given TNF blocker, rather than none at all.

Well, alright then. Let's give it a go. My last injection was March 13th. According to my bi-weekly schedule, I have missed 2 doses. I'm a little sore, but the world is not ending.

I think this comes down to my expectations. I expected to feel like a rock star on a new TNF blocker. I expected to feel normal. Or more normal. Or better. Instead, it was a hole lot of meh. Granted that is better than I am feeling now, but just by a few degrees, not the 90 or 180 I was looking for.

I think the answer here is two parts:

#1 - I need to adjust my expectations. I am still clinging to this vision of "normal". Well, it ain't likely happening. I've had RA for 20 years and normal disappeared somewhere a long time ago.

#2 - I'm going to keep up with my TNF blocker hiatus and see how things go. I'm pretty tough and pretty stubborn. I'd like to find out for myself if Humira was providing a strong impact. I think in the back of my mind, I still think there is a drug that will make a big difference for me. I need to keep up some kind of hope that there may be something out there for me.

Music has woven itself into the fabric of my life again, and there is a song from 2008 that I listened to quite a bit before my shoulder replacement, and it seems to have come back as the chorus resonates with me:

"That-that-that-that-that don't kill me, can only make me stronger"

Kanye had a good point there.

Toeing the Line

2011-03-20T15:00:00.000-07:00

All my life I've been good, but now, I'm thinking "What the hell?"

Good words from fellow Canadian Avril Lavigne. The song is a pop anthem, but every now and then there is a kernel of wisdom to be found in a Top 40 song. While she was talking about busting loose after a relationship, my take is more along the lines of being sick of toeing the line.

I'm such a responsible person. I really am. I pay my taxes. I don't skive off work. I take care of my family. I take my meds. I drink lots of water. I try to eat lots of fruits and veggies. I exercise how and when I can. I toe the line.

All this has gotten me where, exactly? Is it that I would be less healthy if I didn't do these things? In the grand scheme of things, I guess that is possible to be less healthy, but in the grand scheme of things, you could also be arthritis-free.

I've been gainfully employed since I graduated, for the most part with out a break. I've never done something utterly irresponsible. I don't really have that luxury having RA. I need to sleep. I need to take meds. I needs to take care of myself, or else I seem to "pay" in some way.

It's tiring and frustrating having RA and having to be responsible. All.The.Time. As Avril says, All my life I've been good but now I'm thinking "What the hell?"

I'm with you Avril.

Meh

2011-03-13T08:30:00.001-07:00

Meh is the best word to describe what I am feeling these days. The Urban Dictionary is a endless source of entertainment, and I've included their definition of meh.

I am not great and I am not bad. However, for all the medication that I am on, I think I should be feeling better. I keep going back to my state of health just before I started Enbrel almost 2 years ago. Enbrel helped for a little while, then it stopped. I switched to Humira last October, and it helped me for a little while but now I'm not sure I feel all that much better than I did before I started my Enbrel almost 2 years ago. In the past 2 years, all I've done is reduced my Prednisone by 5 mg per day and seen no significant improvements in my health. Sigh.

Almost 2 years of Biologics and no progress is swimming through my brain this morning. I have a Rheumatologist appointment in about a week, and I am trying to figure out what I want to say. He'll ask how I'm doing, and I don't really know. I'm just OK. I want to be better. And that presents a whole other set of issues. I am busy (just like the rest of the world). We are building a new home, decluttering (oh, how I loathe that word) our current home to put it on the market and I am working far too much - both in the office and at home. So I can't seem to find the time to get some exercise. I know if it was really important, I would. It just isn't right now, I guess.

I'm not sure if my state of health is a result of my life right now and being busy and stressed, or if there is an issue with my meds not working properly. I'm not sure how to answer that one. Perhaps some answers will come my way...

Inquiring Minds

2011-02-10T19:35:00.000-08:00

I ran into one of my first challenges with in explaining my state of my (lack of) health to my almost 6 year old son. I was sore today, attributed to nothing specific, and I was short-tempered. Patrick was climbing all over me - he was happy to see me - and I asked him to stop. And I told him I was sore. The word flew out of my mouth before I could think about it or take it back. I have never said that to him before. He may be young but he had this look of understanding in his eyes. Like he knew something wasn't quite right. He's an intuitive little guy.

The conversation moved on, but I'm still stuck in that moment of what would have been a better answer? What do I tell him, and when? I've seen book for kids about kids with JRA which explains why they are different and how to help them - but has anyone seen one on how to explain to your child that you have RA?

I want to provide the right answers at the right time. My right shoulder will need replacing soon enough (the left one was replaced almost 2 years ago) and I know that he will have more questions. It's just hard to find the right answers when I don't even know them...

The Complaint Department

2011-01-19T16:52:00.000-08:00

At work I am an HR professional. Those helpful, happy people who interview, answer questions and listen to the needs of the employees. Some days, I don't really want to listen to people complain, as, in my estimation, they don't have anything to complain about. But that wouldn't really be in line with my profession, so I clam up, listen, empathize and offer my expertise.

I find sometimes I use my blog as the complaints department for my RA. I try to find the positive or humourous in my life, but the reality is that there is a dark and depressing side to have an auto-immune disease like RA and I try as best I can to keep it under wraps. Not always, as evidence from my last post. I have 2 complaints and 1 compliment. I thought I would try to balance things out here a little.

My current complaint is about a bald spot. Yep. I'm 35 years old and have a small bald spot on the back of my head. I discovered it last night while trying to ensure that all of my hair was straight (generally it is curly - not nice curly, just frizzy curly). I wish I didn't look. I don't really want to know that I have a bald spot. I love my hair. There, I said it. I have great hair. I don't brag about much in terms of personal appearance, but I love my hair. Or I love what's left of it. Reflecting back, I'm guessing I've lost about 50% of my hair in the past 2 years. Sigh. I thought I had dodged the "hair-loss" bullet with MTX, but it seems to have hit me square in the back of my head in the form of a bald spot. I will have to mull over how upset I am and how easily I can hide it until my next rheumy appointment in 2 months. I never thought I was that vain, but I'll need to ponder my relationship with MTX...

My second complaint is about the volume of my knee joints. This is a minor and somewhat humourous complaint. I snap, crackle and pop while walking up the stairs - all the time, every time. There is no pain associated with the noise, I just feel a little conspicuous. Like at work, when I'm walking up the stairs and colleagues can hear my knees. Being the HR person means I am generally outgoing, friendly and personable with the staff. So I say hello, ask about their day, talk about their project and even resort to talking about the weather to cover up the cereal-like sounds escaping from my knees. At times it's rather funny. And it doesn't hurt. I smile to myself sometimes thinking of the silly ways I cope with the quirks of my RA.

My compliment is to any friends and family that read this blog and listen to my complaints in real time. It can be very frustrating listening to someone when you cannot help them. Please know that by simply listening that you help. Wheither its calling me after you've read my blog to check in on me or listening to me rant about my inability to open a pasta sauce jar, I appreciate you taking the time to listen over and over again.

PS - Like the new look? New year, new layout!

White room, dark thoughts

2010-12-22T18:26:00.000-08:00

I think most of my rheumatology appointments make me stop and pause. Here you are, in the white room, waiting for the white-coat doctor with nothing except your thoughts to entertain you. I find that I pause to think about my RA, and how it brought me to this room at this time. It's just so upsetting when you stop to think of the totality of what I've been through and what it has cost me.

In life choices that you make, you never really know the road not taken. You don't know how your life would have turned out if you had not started a job, made a friend or been diagnosed with a different disease - or no disease at all, for that matter. But every now and then I catch glimpses of what life might have been like and I feel a strong sense of loss. I see my friends who are active, have energy and don't have to portion their day out based on the energy they have for what they want to do vs. what they have the energy for. Why do I have to choose?

Here's the thing I've been wanting to write about for a while, but the words just haven't been there. I am so ANGRY with my RA. My life, my job, my children, my husband, my parents, my brother, my friends have all been impacted by this disease. I feel that some of my life choices are not my own and most days I put on a smiley face and get through it - whatever the "it" happens to be that day. Not today. A storm has set in, and I can only see the black clouds, not the silver lining.

I am jealous, angry, grieving. I am bone-weary, empty, afraid.

I am glad to get this out of my system. As I've written before, I'm grateful for the one-way communication that a blog affords. It may or may not be heard, but I feel better having said it.

Happy Blog-iversary!

2010-10-30T20:31:00.000-07:00

It's been a year. Wow! Yeah for me!

I've taken some time to read over my musings from the past year, and take note of how I've grown and things have changed. A year ago I was literally tormented by needing to resign from work - now I am happily employed in the hi-tech world working with more great people. My family is great, I am on roughly the same medication, swapping out Enbrel and inserting Humira, and hoping to reduce some Prednisone. But really, what's new about that? Reducing my Prednisone seems to be an ongoing theme throughout my posts - like that closet you never seem to clean out. I'm sure I'll get there someday, but right now I'm not in a big rush...

So what is the biggest difference?

I think focus and control. I am less focused on my arthritis and more focused on my life, I have found a level of balance I am comfortable with. While life is busier with working almost full time - I feel I have more control over it. Work offers flexible hour, which is new for me. If I am 5 minutes late, there is no issue. I can take a longer lunch, I can come and go when I need to and they know I am a professional who will take care of my work. This is new and wonderful for me. Small amounts of control can make a big difference.

I'm proud of what I have written. When I re-read it, it certainly continues to reflect me and my journey. I am grateful for the support of my RA blogging friends. Your comments and posts remind me that there are others out there with the same struggles, frustrations and sources of humour.

I read a post tonight (ok, I'm behind on my blog reading), but Lauri Grassi had a post almost two months ago about MTX bubbling up over her leg, and I laughed out loud. It happens to me all the time and it's comforting to know it happens to others.

Thank you for listening, and commenting. I'm looking forward to another year of growing, learning, making new blog friends and keeping up with the old ones.

Well, that was kinda stupid

2010-10-16T19:23:00.000-07:00

So, I am usually a pretty smart cookie. I am intelligent, educated, intuitive, learned person. Most of the time. About a month ago, I started my Humira injections. And I incorrectly placed and injected one of my vials. Umm, that was an $871.00 mistake. The auto-injector is different from Enbrel (which is idiot proof, as it turns out, since I didn't have a misfire in 15 months of weekly injections).

So I used the 2nd injector of my 1 month supply and thought I would deal with it later. And "later" never came. And it was a sad Thursday before Thanksgiving almost 4 weeks later, when I was in so much pain at work at 5:30 pm which prompted me to call my pharmacy and renew my prescription.

I am working now, and much busier. If all my family members show up where they are supposed to, when they are supposed to and everyone is fed, I am considering that a successful week. But I can't recall a time when I was too busy to take care of my health. I could have called the drug company and asked for another dose. I could have called my benefits provider. I could have done something. But it wasn't until the pain kicked in that I actually did something. I'm still not sure what to think about that, it's just so not me.

On a side note, the week after my first Humira injection I felt like a rock star - I'm looking forward to what the next couple of months have to bring.

What makes a good appointment?

2010-09-06T18:10:00.000-07:00

I had one of the best medical appointments of recent memory last week with my new rheumatologist. He talked, I listened. I talked, he listened. It was an actual conversation between two people on equal footing. Communication, understanding, and a dash of compassion made for one fantastic discussion about my healthcare.

Dr. Kraag started with asking me about myself. What a novel idea. Married? Kids? Job? Medical history? And he didn't outwardly groan when I mentioned I had a list of things to talk to him about. Hey, I was almost 2 months overdue for an appointment, there was a backlog of items on my list!

We talked about my Enbrel and how I thought it wasn't working. I have been on it for 15 months and am not much further ahead physiologically than I was before taking it. I am significantly behind financially - we only had a co-pay of 80%. In my new job, we can coordinate benefits, and I will be 100% covered. So, Humira is next on the list, pending approval from my medical plan.

We talked about Methotrexate injections vs. oral dosing. A big shout out to Laurie Grassi and her Frozen Woman blog, for posting about MTX injections and providing me with information on a study comparing the two methods of administration for this drug. The results of the study indicate a higher level of absorption through injection over oral dosing, without a significant increase in the number or severity of the side effects.

It seems odd that I would ask my doctor to self-inject another needle each week, but I did. The first dose took me 15 minutes to administer. 14 mins and 45 seconds was me counting to 3, and then starting the count again until I mustered up the courage to "take the plunge" as it were. Amazingly, it hurt much less then Enbrel injections as the needle is very fine. I won't go as far to say that it was enjoyable, however it was much more tolerable. Next week should be much better.

We talked about my joints, their damage and he took a look at all of the x-rays the hospital had on file for me. A picture is worth a thousand words, so I'll share a few of his observations with you:

"Do your wrists hurt? No? Well they should, you have no room in there."
"Wow, Lapner did a great job on your shoulder."
"Uh, hunh. Look at those feet. Well that's not good, is it?"

While this was hard to hear, it was great that he had direct access to my films and could pull them up instantly. My last rheumy was in an office, not attached to the hospital, so all he would see is the radiologists report. I think there is something to be said for seeing the pics first hand, in my case the x-rays are rather startling.

We talked about Vitamin D, Calcium supplements and Actenol. He was professionally surprised (read: shocked that my rheumy didn't have me on a preventative plan for osteoporosis, but didn't say much because they are colleagues). I was going for bone scans on a regular basis due to the 16 year use of Prednisone, however this is a reactive test, not a preventative treatment. So, now I am on 1000 mg of Calcium and Vitamin D, and taking one Actenol per month for to keep my bones healthy and strong.

I have a note for an ergo keyboard for work. I have a spring in my step. I have an appointment scheduled in 3 months. I have a plan of action I am excited about. I have a glimmer in my eye that soon, very soon, Prednisone and I may be parting ways on a permanent basis. I have a super new job. I have some hope that my health care moving forward will be proactive and preventative not reactive and palliative. This makes a good appointment.

New job, new house & new rheumatologist

2010-08-25T14:51:00.000-07:00

All in one week!

New job - I am back in the workforce on a 15 month contract working 9 of 10 days. While leaving the kiddies is hard, I was craving adult interaction of a business kind. The company I work for now has flex hours (yeah!), 90% drug coverage as opposed to the 80% (yeah!) and is closer to home. A winner all around. Oh, yeah, and the work seems really good as well.

New house - we signed on the dotted line last Saturday for a new home to be built in the same area of Bridlewood (a subdivision in Kanata, which is the west end of Ottawa) where we live. We will move in next August. Making 1000s of decisions about paint, tile, hardwood, electrical and hardware will be time consuming and exhausting, but I hope it is mental exhaustion only, I'm working now - no more afternoon naps!

New rheumy - well it seems a few weeks ago, I received a call from my rheumy's secretary with some not-so-hot news: the office will be closed for 6-9 months and my upcoming appointment is canceled. Go back to your GP for a referral. Oh dear.

Worst phone call ever (ok, that's an overstatement, but it was likely the worst phone call of the month). Nothing drives fear and emotion than the feeling that you don't have access to the health care you need.

So, being both scared and emotional, I cried. I cried to the next 2 people who called me that day. Then I located my bootstraps, pulled them up, and started surfing the web for rheumatologists in the Ottawa area. Several came up on ratemd.com, and I selected one and called the office. I can be a fantastic conversationalist, so I thought I might talk my way into an appointment. Worth a try, I thought.

Well, the number I called was the Ottawa Hospital, and it seems they have an Arthritis Centre. And somehow, living here for 11 years, I never knew this place existed. I felt a little dumb. Actually, very dumb.

The upshot is that I spoke with the clerk there, very nice man, who told me if my family doctor put the referral as "urgent" I would be seen in a month. Awesome. I went off to my family doc a few days later and a phone call with an appointment followed a few days after that. Painless some might say. My appointment is next week.

I was on the verge of asking for a "file review" (read: I want another rheumy to look at my file because I am not convinced that you are the best doc for me) at my next appointment with my old rheumy, so this is a nice way to switch docs without an uncomfortable conversation.

I am 15 months into using Enbrel and I don't feel that much further ahead. Last year I was on 10 mg prednisone daily and 25 mg methotrexate weekly. Now I am on 5 mg prednisone daily, same MTX dose and Enbrel. Somehow, I thought I would be able to drop more MTX or prednisone, given that I am now on Enbrel.

I felt at times like a palliative care patient with my old rheumy. Like I should take my drugs, take my lumps and not complain too much. And that there were absolutely no other drug combos that would help me. So hopefully my new rheumy will entertain some other drug options that may lead me off some prednisone.

Lots of "new" in my life. I am thankful for the "old" who are supportive and loving and helping with all of these transitions.

How big of a deal?

2010-07-30T11:04:00.000-07:00

I'm back from vacation (East Coast of Canada - very beautiful, I've never been before), and have had lots of time to think and reflect in the 4,200 kms of driving that we did in 10 days.

Some days, my RA seems like quite a small deal. Life is humming along, my joints are good, no side effects in sight. It's just all tickety-boo. No big deal.

Other days, weeks, months, it is a very big deal. I am tired. I am flaring. I'm having side effects from my meds. I feel physically and emotionally like crap.

Where is the balance? How big of a deal is it? That is what is bouncing around in my head. I don't want it to be a big deal - but it is. I've spent the majority of my adult life trying to put my RA in a neat and tidy closet and closing the door, putting on the padlock and all but throwing away the key. I didn't really talk about it. I didn't really address it. I took my meds, went to my appointments and life carried on. I didn't discuss it with friends, co-workers and barely my family.

And then my life and my RA started intersecting. I wanted to have a baby - so off to the rheumatologist to take me off some meds (methotrexate) and put me on some meds (more Prednisone). And then I was pregnant and considered high risk, but both of my pregnancies went along quite well. I didn't flare, nor did I have a remission. Par for the course.

And then I couldn't really wash my hair that well. And I couldn't really lift my arms up that high. And then I had my shoulder replaced.

Looking back, I think my appointment in December 2008 with the Orthopedic surgeon (when I was told a joint replacement was in order) was one of the defining moments of my life. Pretty big statement, but it was a pretty big day. Up to that point in my life, I don't know that I really understood the magnitude of the disease and it's role in my life. I spent so much time trying to not let it have any part of my life, and I dismissed and downplayed any part it that may have impacted my life.

I have RA. It hurts. It impacts every aspect of my life. My marriage. My children. My friends. My childhood. My future. Some days more, some days less. But it is always there, lurking like a shadow. I don't want RA to consume my life, but I am moving closer to finding the right amount of space for it in my life.

Wonder Woman

2010-06-18T08:50:00.000-07:00

Wow, do I feel awesome! How many times do you read that as an opening line for an RA blog? I feel on top of the world. I can conquer 2 kids, a messy storage room and have energy leftover for cooking, cleaning and some working from home. In sum - I am on fire. And my joints are not.

Welcome to the wonderful world of short course, high dose of Prednisone. Oh, the energy. The freedom of movement. The freedom from pain. The freedom to plan. Did I mention the energy?

After a pain-filled, soul-searching two months of 2 mgs of Prednisone, I realized that it is just a number, I value the quality of my life over what my current Prednisone dose is, and I needed to get over my frustration of not fully getting off Prednisone and face the fact that I was flaring and there was nothing else for me to do, other than increase my dose. So after a call to my rheumy, he suggest 10 mg per day for 2 weeks, 7.5 for 2 weeks and 5 until I see him.

This has been a tough pill for me to swallow. I read other bloggers experience with getting off Prednisone as they conveyed their frustrations and thought, "that, of course, won't happen to me", fully expecting that I would march down the road to being Prednisone-free in 10 smooth months. I had a plan, afterall, and I am a planner. What could possibly go wrong?

Well, as usual. RA had other plans for me, as it usually does. So I am now enjoying my Prednisone-induced pain-free time, knowing that I will try again. And again. And I will be free one day, just not today.

Denile is more than a river

2010-05-30T11:43:00.000-07:00

Denial is a state of mind, and a lovely place to live, I might add. For a few weeks (months?) I have been feeling a little under the weather. Less energy, pain in my feet which has now spread to my right hand. I wake up with a claw-like right hand that takes some coaxing to get moving in the morning - and it seems to be taking longer and longer for it to get going. I can see the puffiness and feel the pain. This morning I found myself asking my son to be careful with my hand - and that was an hour after I woke up. Hmm, that was a bit of a wake-up call for me.

I think I've been in denial about this flare for a while. I have moved passed "compromising" with my Prednisone, and have gone to full "capitulating". I am taking 2 mgs per day of Prednisone and still taking a double dose of Dicofinac. And am trying to talk myself of out of calling my rheumatologists' office to move up my appointment from mid-July. I am also trying to ignore the fact that certain shoes (even my trusty old runners) make my feet scream because they are squished and Crocs or flip flops are my best friends.

I've been dealing with RA for 19 years and still I am baffled as to why I flare. In my mind, if I get enough sleep, don't drink too much, don't over or under exert myself, eat well, take my meds, lower my stress and laugh a little that I will somehow manage to not flare. It seems that my RA isn't responding to my formula for health. And it's frustrating.

It's not my worst flare, it's not my best, but a flare by any other name still hurts the same.

Compromise

2010-05-04T06:08:00.000-07:00

Ever since I moved to 1 mg of Prednisone per day, I've been struggling with various joints. It's now getting onto 7 weeks, I just haven't been moving well - creaky knees, sandpaper hips, curled up fingers. In late March, I talked to my rheumy and we agreed to change my Diclofinac to Naproxen and see how things would go as I didn't think the Diclofinac was doing very much. Well, they didn't go much better with the Naproxen and throw in some stomach issues, to boot. So after a call to my rheumy, he suggested I take my Diclofinac twice daily. And I move my prednisone up to 2 mg. I said no to the Prednisone but yes to the increase of Diclofinac.

The Diclofinac is not doing much better at two times per day . . . and it got me to thinking about my relationship with Prednisone. I have the perception that Prednisone is the root of all evil and the giver of life at the same time. I do not like all the side effects I have experienced and some I continue to experience, however I love the way it helps me move significantly better.

I talked to my hubby - his thoughts were that it is just a number (2 mgs instead of 1 mg) and my quality of life would improve. In the end, he is right. It's just a number and I shouldn't get too attached to it. I will get off Prednisone soon enough, but not this week or this month. I think I am holding on to this so much because it is the one thing that I can control, and while it doesn't make sense to live in pain because I want to take 1 mg of Prednisone, it seems that is what I am doing.

So, I compromised (caved?). I'm alternating days of 1 mg and 2 mg. I took my first 2 mgs last night before bed and woke up a new woman - well at least there was no obvious pain and I didn't creak as much as I used to. Damn you, Prednisone, for making me feel better . . .

My 35th Birhday

2010-04-27T13:36:00.000-07:00

Sunday was my 35th birthday. I am now 35 years old. I now have to check off the 35 - 49 box on random surveys. Or at least the ones where I get a free Starbucks beverage. Hmm, Starbucks. I digress.

April 25th was eventful. At midnight I was in a bar supporting my soon-to-be sister-in-law through the rite of passage known as the bachlorette party. There were about 10 of us, and most were closer to her age (27) than mine. I would have felt old, except for the dodgy 40 year old men who were leering at all of the younger women. We had a super time.

Needless to say, on Sunday I was a little tired and sore. And my feet hurt, a lot. So much so, that 1/2 way home on my 3.5 hour car ride from Toronto to Ottawa, I pulled over, called my hubby and cried. I was wearing running shoes done up as loosely a I could, and they were throbbing and inflamed. After a good cry and a few rounds of "how the hell am I going to get home?", I pulled myself together, got a Timmy's Steeped Tea, took two Tylenol and just kept driving. What else was there to do? I think this is reflection of my life. Sometimes you just need to suck it up and keep going - because there aren't any other options.

My day improved when I got home - the kids came out running to see me and had lots of hugs and stories about their weekend. I had a lovely birthday dinner, home made cards and some thoughtful gifts. And then a migrane which lasted for 12 hours.

My birthday brought a little from column A and a little from column B. There is happiness and joy, and at the same time there is pain and frustration. I think my birthday reflected the balance of my life right now. I'm hoping for a little more from column A (happiness and joy). We'll see how the year unfolds.

My new job

2010-04-10T18:30:00.000-07:00

My new job started this week - I am now a full-time mom. Yeah! I worked for my employer for almost 10 years, and felt I was missing something at home - so here I am, at home. While I was only working 3 days a week when I finished, there was a toll on me and my health. I think I just wanted to slow down. I wanted to make sure that in 10 years, I didn't look back and wish I had spent more time at home with the kids. I know I am fortunate to be able to stay home with them and I'm glad I am taking advantage of this opportunity.

The kids just turned 3 and 5 - along with their birthday parties (on back to back weekends, as their actual birthdays are 4 days apart - whew, that was beyond busy), came their annual check-ups with our family doctor. All is well, but every year we go, I have a fear that she will find something with their joints - and to be honest, I check them from time to time myself. I know that the cause of RA is unknown, however there is a small, but irrational, fear that they will live through what I have. And I do not want this part of my life for them.

Patrick (my 5 year old) had to get a booster for a few of his immunizations, and he did not take his needle well. On the way home he went on and on about how he was never ever going back to Dr. Karen's. And then out of the blue, he asked me if I still take needles. It's funny what kids remember - we had talked about it 3 - 4 months ago, but they have minds like steel traps. So I told Patrick that I take medication to help me feel better. That's my line for now, I'm sure it will change as his capacity to understand grows. He said he didn't want to be me and take needles every week. In my head I agree with him - sometimes I don't want to be me either...

I have seen a glimpse of the pain of being a parent of a child with RA - when I was younger when my dad created the pain machine and recently, when I had my shoulder replaced last year.
When I was post surgery, I was able to leave the hospital room with my parents, so we went downstairs to the atrium at the Ottawa General hospital. I drank a Tim Horton's Iced Capp with a tube sticking out of my neck and my arm in a sling. Nice. It's the feeling of helplessness as a parent - knowing that all you can do is sit there, be there and hold their hand. I'm grateful for my parent's ongoing support through my ups and downs and I hope that I don't have to face those particular parental challenges, as I don't know if I would be as strong as they have been.

Oh, med students . . .

2010-04-01T17:02:00.000-07:00

I saw my rheumatologist yesterday. Good visit. We checked-out my mini-flare, my joints, and a quick physical exam. To help my through the final stages of my Prednisone reduction I will be enlisting the help of an old friend - Naproxen. The appointment went well - except for that pesky med student. To be fair - he is a doctor of Internal Medicine going for extra training in Immunology. So not a super green 3rd year med student - but still seemed just as green and clinical.

Now don't get me wrong - I always agree to have med students watch procedures, perform procedures, take my blood, interview me, perform joint injections - the whole nine yards. This time, however, it was beyond awkward - he just didn't get RA. Here are a few excerpts from our conversation.

Med Student: Are you sure you're flaring? Because I can't find any inflammation...
Me: Um, yes - I am flaring and there is inflammation in the following joints...

Nice. I've had RA for 19 years, but - according to him - perchance I can't recognize a flare when I see one. Perchance he can't recognize a joint if he sees one.

MS: I see you are on Enbrel. Well, Enbrel is a biologic that -
Me: (smoothly cutting him off) I'm a fairly well education patient and I've been on Enbrel for 10 months. I know what it does.

Seriously? Did he honestly think that I would take a medication, any medication, that I didn't know what it did? For 10 months?

MS: I don't see why we don't raise your Prednisone back up to 2 mg
Me: I just explained that I've worked for the past 10 months to get off of it - I'd rather look at NSAIDs as an alternative. I don't want to be on Prednisone anymore.
MS: It's not that much Prednisone.
Me: For whom?

The Med Student seemed like a nice guy, he just treated me like a number and was quite clinical about the whole thing. A + B = Flare. Not matter what the patient actually says.

He hadn't reviewed my file (I know, because I asked in one exasperated moment) - not even the last letter to my GP updated on my current status. Sigh. I usually have a good amount of patience for this kind of thing, but I couldn't help feel that he was wasting my time. I knew a 5 minute conversation with Dr. T (my rheumatologist) would solve everything - and quickly. And in the end it did. Whew, that was as exhausting to write about as it was to experience it.

July 19, 1991

2010-03-29T19:22:00.000-07:00

I was digging through some old boxes a few weeks ago in an effort to de-clutter my storage (read: junk) room and came across a small, brown paper bag that brought me to tears. It was from my first stay at Sick Kids Hospital in Toronto from 1991 - July 19th to be specific. And I read the label and I just sobbed. Has it really been that long? I wrote a post about how long - but somehow that little paper bag with a hospital label just knocked me flat - emotionally.

The other discovery was the contents of the bag. It was blessed oil that my grandfather had given to me when I was first diagnosed, and a hand-written prayer to go with it. My grandpa passed away 12 years ago, and I really only have memories of him - great memories. He had a rock-solid Catholic faith and I'm sure he prayed for me and my health. I miss him.

The grandpa memories combined with the totality of my RA hit me hard. Has it really been that long? I think I could write that question 100 times in this post with different inflections and never fully have the answer.

Has it been that long? Yes. Has is really been that long? No. Has it been that long? Really? Has it been that long? Seriously? Has it been that long? OMG. Has it been that long? @#!*. Has it been that long? Ouch. Has it been that long? (resigned sigh). Has it really been that long? (tears). And all those answers are followed by a sadness, emptiness, and a bit of defeat.

I can't help but reflect that the glass being a bit half empty - at least today it seems that way. I've had RA for more of my life than I haven't. I guess it really has been that long.

Dinosaur Drugs

2010-03-21T15:30:00.000-07:00

I was surfing a website which listed the arthritis medications which are currently in use and it listed a few that are no longer in use - in particular Gold Injections caught my eye. I was on Gold Injections back in the day - way back in 1991 - 1992. And now they discover they are not effective in the treatment of RA. Hmmm.

I went to my GP's office twice a week for over a year I would go to give a urine sample one day - they would rush it to the lab. The next day I showed up, and after a quick scan of my labs, I would get my shot. It was a pain in the butt (haha, it was an IM injection - typically in my glute). I was taking the injections in combination with another DMARD (can't remember which one, see extensive list below). Clearly the gold wasn't pulling its weight, as it is now found that Gold is ineffective in the treatment of RA.

Thinking back on all of my drugs over the past 18+ years, I seem to have been around the block once or twice. Sulphasalazine, Methotrexate, Arava (only a short time, the side effects and time I needed to be off it before conceiving scared me), Plaquenil (the most bitter tasting drug - ever), Imuran, Naproxen, Prednisone, Enbrel. Hmmm. Quite the list.

My current combo of Enbrel, Voltaren, Methotrexate and 1 mg of Prednisone seems to be ok for now. Writing this entry was like taking a trip down memory lane - revisiting old friends I met along my RA path. Whew, there are a lot of them...

How are you?

2010-03-11T20:30:00.000-08:00

For most of my RA life, I was of the opinion that when people asked "how are you" they really just wanted to hear "good". Most people don't want to hear anything else, it's a rather superficial transaction - most of the time. Some people want actually hear how you are - but not that many. Really. So, I provided the requisite answer of "good" (insert bright, but fake smile here) and kept trucking along with my RA on the down-low.

For those who really wanted to know, I try for a bit of honesty mixed with some humour to make it not as big of a deal. Even with close friends, I don't really talk about my RA. It can get depressing for me, let alone anyone else.

I'm not so sure I employed the best strategy, but I didn't really see another option. People don't really want to hear about it, so I really didn't talk about it. For years. To anyone (almost). And to see my life from the outside, I would doubt that you would know. But I knew and bottled it all up. Now I'm sorting through all of my feelings, thoughts, ideas and emotions about RA.

But, in some ways, I would be better served in my life if I actually told a few more people when I was having a crappy day and asked for help. It turns out - people like to help. Really. All you have to do is ask.

I think through blogging, sending my blog link to friends and family, I have started a dialogue about where I'm at and what's on my "RA" mind. I can talk, they can listen if they want to. It's a rather passive method of communication, and I'm more comfortable with that. And since I haven't really talked about it for the first 18 years of my diagnosis - some of these posts are rather overdue.

2 to go!

2010-02-22T18:25:00.000-08:00

Not much reason to celebrate February when you live in Ottawa. Well, there is Winterlude and Beavertails (the yummiest deep-fried pastry with maple topping ever invented). But other than that - it's cold and February seems to last forever.

But there's a party in Megan's medicine cabinet, as I am down to 2 mg per day of Prednisone and heading for the home stretch. Wuhoo!! It's not been the easiest, but I think my utter euphoria of being off the drug may just carry me through the next two months. Seriously. I'm that jazzed.

The more I read, the less I like prednisone. I feel like I just woke up 18 months ago and really discovered what I was taking and started to ask "why". It seems the current protocol for RA is to use TNF blockers with a complementary DMARD and some anti-inflammatory meds as needed. It makes me wonder about my Rheumatologist. I've been "hanging out" on Prednisone for over a decade - and I didn't start to go off of it until I insisted. As previously posted, I have a love/hate relationship, but as the end draws near - I wonder about all those years and all the side effects.

I am seeing my Naturopathic Doctor for acupuncture and a fantastic massage therapist to work out some of my kinks. These treatments seem to take the edge off any hiccups each time I drop 1 mg. And Yoga. When I had my shoulder replacement, I was out of commission for a while, but I'm back and forgot how much an active Yoga practice really helps me. Going to Cuba also helped. Really. Something about no stress, a warm climate and endless beaches. But for now, I'm working through my bumps in the road with tools I have.

No end in sight

2010-01-27T06:55:00.000-08:00

17 years, 6 months and a few days. Daily. Chronic. Never-ending. Infinite. Constant. Permanent. Yuck.

Here's the thing that has been on my mind recently - there is no end. There is no cure. I haven't seen a remission in a good long while. My meds are decreasing on some ways - reducing my prednisone - but I've also brought in some heavy hitters - Enbrel - to fight the battle. Overall, I'd say I'm up on the medication front. And this is to keep me comfortable. No pain-free. Not in remission. Just functioning at an "arthritic normal" level.

I used to believe that I was working towards some mystical place called remission - that one magical day my meds would decrease. I'm not naive enough to believe I could some day live drug-free, however fewer meds would be nice. I think I've given up on that dream and am working towards not taking more meds. I am aiming high on that one.

I know that since biologics have entered my life - and many others in the RA blog community - there has been a significant impact on overall disease activity. Problem is for me - I have 17 years of RA damage to contend with - resulting in 1 teflon shoulder and 1 on the way in 2010. But in the end, there is no end in sight. Some days I have tonnes of energy - others, not so much. And while there is no end in sight, at least some days I have the energy to enjoy the scenery along the way.

Obsessing over my hands

2010-01-24T18:20:00.000-08:00

Lately I have been obsessing over the ulnar deviation (swanning) in my hands. As you can see from the photo above - the index and middle finger sway to the right. To the casual observer, this may not look like much - however, I am not a casual observer of my hands. I see them all day, every day and wonder what they will look like in to 10, 20, 30 years. I've seen seniors who have hands they can barely used because of deformities, and I worry that will happen to me. I know this will not happen today, tomorrow or the next day, but I know it will.

RA can be a tricky disease. One day you're fine and then changes slowly creep in, and next thing you know, it's 5 years later and your list of "what I used to be able to do" is gaining equilibrium with the list of things you can do. Scary. Just sorta sneaks up on you and taps you on the shoulder and says "Boo!"

I've had RA for 18 years - I've had it for more of my life than not, and when I take stock of what damage I've had so far, I know there is more to come. I'm not pessimistic, I'm realistic. I don't want to stick my head in the sand and pretend it isn't happening. I'm trying to prevent further damage, which includes taking an honest inventory of what could happen, and then planning for it. One more item to add to my list for my next rheumatology visit...

Layers of an Onion

2010-01-16T20:28:00.000-08:00

2009 was a world of change on my perspective on life. Really. I feel like I woke up from a coma realizing what is important and I was on a mission - but taking a turtle as opposed to a hare approach to my plan. I must thank RA Guy for inspiring me. In one of his posts he talks about his health care team. And it got me thinking - who is on Team Graham? (crickets) Hence, my mission to create Team Graham, mobilize the troops and move me towards a better place of health.

So far, I've recruited my naturopath, a physiotherapist, a yoga instructor and a therapist. Team Graham is growing by leaps and bounds! Oh, yes, and my trusty rheumatologist and ortho surgeon. I'm looking for a better state of health, and have tried several of the above approaches before - separately - with some success. I'm looking to gain some help from each area in an effort to navigate the Prednisone-reduction and the post-prednisone era that is coming. I know that further flares are around the corner, and I want to be prepared.

The Warm Fuzzies of Gratitude

2009-12-23T17:05:00.001-08:00

This past year has been a year of change for me. 3 new nieces, 1 new teflon/plastic shoulder, 1 new designer drug (my nickname for Enbrel), 6 mg less per day of prednisone, 2-3 flares and 1 realization - in the face of flares, surgery and other health issues - that my family is really more important than anything else in the world.

In reflecting on my year, I feel grateful for the people in my life and for the events that have happened. I believe you learn from your experiences, and this year was a world of discovery.

I learned through my shoulder replacement that I am pretty tough. That you need to be your own health care advocate. That a nerve block for a Total Shoulder Replacement is a very good idea.

I learned that if you ask for help, you will usually receive it. Friends are willing to take you grocery shopping when you can't drive - and they will even carry your groceries into your house. They will also drive you and your son to his appointments. Wait. And then drive you home. All you have to do is ask.

I learned that a parents love never lessens. Even when you are their 34 year old "baby." This year has presented a few more downs than ups, but the support from my parents never wavers. They are a 4 hour car ride away, or a 10 digit phone call. Either way, I always feel their physical and emotional support .

I learned it was time to move on from my job. That family is more important than work. In 2010 I am working towards transitioning out of my company and am excited to stay home with the kids.

I learned that I need to take better care of myself. To re-visit treatments that gave me some support and relief. Massage. Acupuncture. Eating better. Small amounts of exercise. Naps. Doing less in a day and feeling good about it.

I learned to find joy in the day to day. In simple things. Going to Starbucks with friends for a chat after the kids have gone to bed. Playdates. An "I lub you, mommy".

I learned there is a wonderful community of RA bloggers, offering support, friendship and the bond of similar experiences. It's nice to feel like a part of a community of people who understand.

I learned - for the 12th year in a row - that my hubby rocks. Literally. He is my rock who makes me laugh, does my hair in a ponytail when I can't reach due to my RA, shares all our parenting ups and downs and just loves me.

From my warm, fuzzy place of gratitude, I hope everyone has a Merry Christmas!

Energy - A hot commodity for people with RA

2009-12-20T09:20:00.000-08:00

It comes, and it goes, but it's always on my mind - exactly how much energy do I have today? I think most people in my life would agree - I'm a bit of a doer. I love checking things off my list and getting through lots of errands, cooking and house-stuff. But each activity takes energy, so I have to budget the estimated amount of energy I have vs. how much energy I think I have. Sometimes it works out, and I have some energy leftover at the end of the day, and other times - not so much. I am tired and exhausted long before bedtime, so I push through the remainder of the day silently cursing myself.

I know I need to slow down. I forget that the measure of "how was your day" is not "what/how much did you do today". I could have a super day and do absolutely nothing on my to-do list. I could just play with the kids and it could be the best day ever.

Given my current flare, I am taking a harder look at what I have to do today versus what I would like to get done. I simply don't have the energy that I used to (and would like to have), but I'm not one to sit around and turn off my inner monologue of everything that still needs to be done. I'm slowly realizing that there is nothing wrong with life in the slow(er) lane. But it's a work in progress for me - and I find myself (especially around the holiday season) reverting back to my roots. I need to add a permanent item to my "To-do" list to take a break and slow down. Perhaps then I'll do it.

Was it a bus or a train that just ran me over?

2009-12-13T09:33:00.000-08:00

I've found my pity place and I'm throwing a huge party - feel free to join in. I'm tired. I'm sad. I'm mad. If I were my 2 year old I would be on my tummy right now kicking and screaming in a full blown tantrum- assuming I had the energy, of course. Instead of throwing a tantrum on the floor, I'll just write about it.

I am 97.6% sure that I am having a flare, however it feels like a muted version, as my sugar-daddy anti-RA drug (Enbrel) seems to be working for me and I am not feeling the full force of the flare. I am trying - 1 mg less per day each month - to get off my Prednisone. I have posted before about my love/hate relationship with Prednisone - but I feel it is time to part ways, but what is the cost? I have been reducing my Prednisone from 10 mg per day down to 4 mg per day now - which I am excited about. However I have noticed that I have had a few mini-flares recently, so I am now paying the price of less prednisone. RA Guy has blogged about Diclofenac injections, and I have made a note to ask my rheumatologist about this on my next visit.

I am also paying the price of a way-too-big-day at work this past week. Our company hosted a drop-in party for 100 contractors and I (as usual) helped out with food prep all day - leaving me on my feet using my hands. My right thumb said a big "screw you" by not functioning properly for the following 2 days and the rest of me woke up feeling like a bus/excavator/street paver/steamroller/passenger train ran over me (can you tell I have a 4 year old boy?). In sum, I feel like crap.

I'm mad at myself for not speaking up. You'd think that after 18 years of living with RA, I would know my limits and be able to speak up. Somehow I prioritized work over my health and wound up on the couch, tired and in pain. Usually I'm a pretty smart cookie. Usually.

Some Hardware - Part 3

2009-12-06T17:45:00.000-08:00

I made preparations for my 2 little ones to leave town for a week of fun at the grandparents. Both sets were wonderfully supportive to take the kids for 4 days each so my first few days recovering at home I could focus on myself. I thought that would be best for me and for them. I want to limit what they see of my arthritis for now, and me with tubes sticking out everywhere might just be too much for them - they don't need to see their mom like that. I made arrangements at work, I attended my pre-op appointments. I did not get a pedicure (thought I desperately wanted one) - apparently they check your toes for your circulation and nail polish gets in the way. Boo.

To deal with my stress, I went for a 2 - 5k walks the day before. I strapped on my ipod and pretended I was someone else for a little while. I swung my arms and tried not think about anything really, especially the life-altering/life-improving? surgery the next day.

I showered with anti-bacterial soap and put on clean clothes. I arrived on time, hungry and scared. They offered me a mild sedative, I took it gladly. They took my blood pressure, which was through the roof. The nurse asked if I had problems with my blood pressure. Seriously, is that a question? I'm about to have major surgery, and you're commenting on my high blood pressure...?

I was off to the anesthesiologist for a nerve block in my neck. Honestly, my anesthesiologist was one of the nicest doctors I have met - and that's saying quite a bit, given the number of doctors I have met over the years. The inserted a tube in my neck where they could administer medication to block the nerve (pain) signals to my brain. This is a good thing, considering the trauma my poor arm was about to endure.

My surgeon was well, himself. I asked the nurse to see him prior to the surgery and he breezed in as I was off to lala land - needless to say, there was no conversation. Oh, surgeons. I really just wanted a few reassurances that everything was going to be ok.

I awoke in recovery with my arm in a sling, a little dopey, a little thirsty and a little disoriented. The nurses were helpful and soon enough I was off to my room. There was a miscommunication, as my husband was told he would be called in the waiting room when I was being moved to my room - well that didn't happen. I was in my room, alone, scared and sobbing wondering where he was for an hour. Surgery is scary. I was scared. I didn't want to be alone. I needed John to hold my hand. I couldn't imagine going through this without the support network I have. Parents, friends and mostly my hubby.

Some Hardware - Part 2

2009-12-01T17:19:00.000-08:00

To cut, or not to cut - that is the question. To start on the bionic path or not -that was the question I was struggling to answer. I knew this path was inevitable, but I just wasn't ready for it right quite then. I thought 3,5,7,10 years would pass before I needed to go under the knife - years, not months.

I had a tough December in 2008 while I wrestled with this decision. I knew that I needed the surgery, and if I waited too long, my surgery would not be terribly successful. I talked to my husband, my parents, my rheumatologist. Actually, my rheumy took 45 minutes to meet with me about it, and saw me on short notice, as I had many serious concerns about the prospect of surgery (that's putting it fairly mildly). He look at my radiology reports from the hospital and confirmed that my shoulders were in a bad way and that surgery was the best recommendation for me.

I cried, I raged, I pulled out all the stops in my pity train. Life wasn't fair. Why me? Woe is me. And then, acceptance, empowerment and a decision.

I booked my surgery for May 19th, 2009 and the countdown began. I second guessed my decision several times, but in my heart of hearts, I knew that this was the right decision at the right time and to delay was merely delaying the inevitable.

Some Hardware - Part 1

2009-11-24T18:00:00.000-08:00

It seems that slippery slope I referred to in my last post landed me in in the Grand Canyon of joint pain, erosion and immobility.

As always, it started with a trip to my rheumatologist. Nice guy. Good care on a consistent basis. A few times when I've been flaring he's taken my call and talked about medication adjustments. I see him every 4 months, give or take.

My shoulders weren't working so well. Anything where I was reaching (doing laundry or reaching into the back of a cupboard) or lifting (mainly small children) or above my head (washing/styling my hair, overhead cupboards) wasn't all that easy for me. And this applied to both my shoulders fairly equally. At times there was shooting pain, dull pain, resting pain or little creaks, twinges and nigglies. It was getting harder to do day to day activities.

I asked my rheumatologist about my shoulders. He initially seemed hesitant about getting X-rays until I insisted a little. Always good to be a strong advocate for your own health care - you know your own body. I knew that there was damage, but I wanted to know how much. My first set of X-rays were taken in March 2008. At my next appointment the radiology report indicated almost no space left in the joint and that there was significant damage. The average non-RA person would have cartilage to create space in their joint so it moves smoothly, without pain. My RA eroded my cartilage and was started to move bone-on-bone. Yes, that is as painful as it sound.

This wasn't great news, I knew that much, but the thought of surgery never entered my mind, even when I was referred over for an orthopedic consult.

As with any specialist, ortho surgeon consult appointments are about a 9-12 month wait time here in Ottawa. So I put it to the back of my mind. Fate, it seems, interceded on my behalf as after only 2 months I had my consult appointment. It was a Friday in December of 2008. John, my husband, came with me. My surgeon, like most surgeons from what I hear, was not so great at the people skills. He did a physical exam and looked at my shoulder films. And then told me the most unexpected and devastating news - that both shoulders needed to be replaced, relatively soon.

I don't really know what I was expecting from the appointment. If I'm really honest, I thought surgery would be a few years off. My functional ability was OK and I had some pain, but I wasn't completely disabled.

The damage in both shoulders was equally bad. The surgeon explained that there comes a time where surgery is not possible as there is not enough of your own bone to work with and the repair can't be done. If I waited too long, I wouldn't be able to even have the surgery as my shoulders were deteriorating at a fairly rapid rate.

Given his people skills, it then turned into an awkward and - in retrospect - funny conversation. He asked me if I wanted to book a date for my TSR (total shoulder replacement) now, or if I wanted to think about it. I felt like I was buying a car - you know that pressure to make a decision right then and there? Strange concept to apply to your healthcare. I said I needed to think about it and would call for another appointment when I had made a decision.

And then I left the exam room with John and I started sobbing. Full-body sobs. We walked around the hospital in all the wrong directions trying to get out to our car, but not really knowing where we were going. This was the first time that I ever remember being in shock. This news wasn't mine. I was too young, I mean who has a TSR at the ripe old age of 33?

This day easily made my worst top 5 days ever.

I used to be able to do that....

2009-11-23T20:52:00.000-08:00

It's a slippery slope down the "I used to be able to do that" path. One day you can't seem to raise your arms high enough to wash your hair properly and it causes you to think for a moment - I used to be able to wash my hair and now I can't... when/how did this happen?

I also used to be able to stretch my wrists so my forearm and palm made an 90 degree angle, but now I can't. How did that happen?

My fingers used to be straight and now they're not. How'd that happen?

Losing my range of motion happened slowly over time and only after enough time has passed that you notice that can't do what you used to. Fortunately for me, the lower half of my body is pain-free with a fantastic range of motion. My upper half, not so much. I can walk, run a little (should, for some reason, I choose to), skip, tread water and twist into some amazing yoga poses that involve my lower half. I will not, however, be breaking any world records for push-ups. My wrists and shoulders have some significant and permanent damage and just don't move that way anymore.

It's funny about losing your range of motion - the current state of my wrists have become my new "normal" and I accept them as is. I don't really remember the time when they were able to do more for me. I am grateful that I can walk without any mobility aids. I love my independence. I remember when I wasn't so able-bodied, and that makes me appreciate the here and now even more.

With experience over the past 18 years of RA, I'm now more proactive with my health care. I feel that I could have been more on the ball with my wrists, in retrospect. It happens so slowly that you only see it years later. From this experience, I am very aware of how my legs, knees, ankles and feet are doing, and any changes I raise with my rheumatologist. I've learned a hard lesson on early intervention and active care for your joints. They can replace some - but not all - and I'm not aspiring to become the bionic woman!

Dreaded Tuesdays

2009-11-17T18:00:00.000-08:00

Weeks pass - they come and go. Life is busy with work, family, friends, groceries, errands and everything in between. For some reason, every Tuesday, the world stands still just a little. Tuesday night is the dreaded Enbrel night. I started taking Enbrel in June of this year, to combat some of the damage RA has wreaked on my body. So far I have 1 replaced shoulder with one to go. I'd like to keep the joint replacements to a minimum, if possible.

Every Tuesday after dinner, I start thinking about it. And dreading it. Given my medical history of shoulder replacement, countless vials of blood, gestational diabetes and untold numbers of joint injections you would think that a little needle each week would not be an insurmountable task. Well, some weeks it is. At the beginning I would sit on the edge of my bed staring at my thigh for 20 minutes, willing myself to just get on with it. Other times, I would have my husband sit next to me so I would move it along a little faster.

It doesn't hurt that much. But I dread it nonetheless. In a week of moving from one thing to the next, and ignoring my RA, this causes me to pause and take a moment to consider my health. Sometimes I just don't want to do that.

Lately I've been getting better. The dread starts as I head up the stairs for bed. I quickly gather my alcohol wipes, kleenex (for the bleeders I have sometimes), a band-aid and my auto-injector of Enbrel. I take less than 3 minutes these days, and just right down to business. 1,2,3 and in she goes. I'm getting better at it, but that doesn't mean that I like it...

Motherhood & RA

2009-11-15T19:44:00.001-08:00

I have 2 beautiful, healthy and happy kids - who have a lot of questions. Patrick is 4.5 and very observant and starting to ask questions.

What is that box in the fridge for mommy? (that would be my Enbrel).

What does that thing on your wrist do? (that would be my wrist splint from a recent flare).

Do you still have an owie on your shoulder? Can I kiss it better? (that would be my 5 inch scar on my left shoulder from my total shoulder replacement in May.)

Why are you so tired mommy, do you need a nap? (that one could be asked daily)

While they are too young now, what do I tell them about mommy’s ongoing "owie"? How would they ever understand? I’m not sure I understand. I can just hear Patrick’s inevitable question “Why?” - taken to the nth degree as only 4 year old can. For now, I'm sticking with the basics of mommy needs some extra medication to help her. I think that is enough, for now.

I worry, though, about the future. How will my RA progress? What will/won't I be able to do? Will I be able to dance at Patrick's wedding? And worst of all - every parent's nightmare - will they also get (J)RA?

I know consciously I need to focus on the here and now, and not live in the future. But my sub conscious has a mind of its own, and still, I worry ...

My love/hate relationship with Prednisone

2009-10-30T19:24:00.000-07:00

I've been on varying doses of prednisone for about 12 years. Some times at 5 mg a day, sometimes at 20 mg a day. As with most prednisone stories, it started with love. I clearly remember the first day I was on prednisone. I had been on 8 aspirin a day to control my symptoms, but still, every day, my mom had to do my hair in a pony tail, help me get dressed and drive me to school. I couldn't walk that far and lifting my hands over my head was simply not possible. I remember writing my grade 10 year end exams where my fingers would stick in the shape of how I was holding my pen, and I would have to physically pry them open. At the time, I thought it was funny. Now - not so much.

I remember taking prednisone at night and waking up a whole new person. I could walk, better yet - I could run! I felt like I was myself again. I'd been a member of the basketball and volley ball teams a mere 4 months ago and then I couldn't walk to school. Little did I know the long-term cost of this new-found freedom.

My love affair continued when I wanted to have kids. Most anti-arthritic and immunosupressant meds don't mix with pregnancy - so prednisone at a higher dose is one of the few options available. During my pregnancy things went swimmingly, until I was diagnosed with gestational diabetes and for my second munchkin, I went on insulin. My daughter was born 5.5 weeks early, and my amniotic fluid was leaking for 1 week prior to delivery. It turns out, it was great that I was on prednisone, as they generally give steroids when babies are premature to help with lung development. In my case, I'd been on steroids for the duration of the pregnancy, so Chelsea's lungs were just fine. This is one of the very few favours prednisone has ever done for me.

My relationship with prednisone started to deteriorate when I really started paying attention to the side effects. I'd been on the drug so long, I didn't really notice that I have "mood swings" - although that seems like an understatement. I don't know that I recognized them for what they really are - hard to control fits of strong emotion that require a conscious effort to keep in check. I also have a sizable "hump" on the back of my neck - but since I don't see it all the time, I don't notice it.

I love it and I hate it. Right now now I'm slowing ending the relationship, one less mg per month. If all goes according to plan, April 1st, 2010 I will be be prednisone-free. Keep your fingers crossed.

Early Days

2009-10-30T19:23:00.000-07:00

After I was diagnosed, I was admitted to Sick Kids for 2 weeks for treatment - I was in pretty rough shape. I had 8 cortisone joint injections in 8 joints in one day, because the lack of mobility and significant inflammation in all of my joints warranted some aggressive treatment. My wrists, my knees, my ankles and my shoulders. I remember being on the treatment table, staring up into the ceiling where there were purple butterfly decals stuck there. Given the 8 needles going into my body 1 by 1, who the hell thought butterflies on the ceiling would help any kid with that kind of pain?

My parents came to visit. My mom during the day, and dad would stop by at night after work. It was hard on all of us, likely more for my parents than for me. I, of course, didn't see that at the time. But now that I am a parent myself, I would go out of my mind if either of my children had to go through what I did.

I remember one night, my dad came to visit after work. He was a little tired from a long day, and I was wheelchair bound from the 8 joint injections. I was itching to walk, he wanted to sit. We cruised around the ground floor of Sick Kids to the day clinic area. After hours, it was empty. We could talk, laugh, visit. He sat, I walked. And then he invented the pain machine. It worked like this: I would hold his hands and all the pain I had would go to him. As a parent, what else can you do? I still start crying when I think about the pain machine and how hard it must have been for my parents to see me suffering.

Sick Kids put my back on my feet, walking without pain, on better meds and with some physio exercises to keep my range of motion strong. I was armed with knowledge, custom-made resting wrist splints with hot pink velcro and some hope that everything might be ok - at least for a little while.

Begin at the Beginning

2009-10-30T18:32:00.000-07:00

I started having shoulder pain in the mornings in the winter of 1991 - not something I gave much thought, chalking it up to usual aches and pains of being a on the junior high school volleyball team. And then volleyball season ended, and my shoulders and wrists still hurt. Off to my family doctor I went and some physio was prescribed, ultrasound on my wrists. The first time I heard arthritis mentioned was by the tech performing the treatment and of course, I said I was too young. And I was, wasn't I?

My GP wasn't sure so he sent me to an internist who tested me to no avail for 3-4 months. Finally, after a trip to a lupus and chronic disease conference for teenagers in search of some answers, I felt confident that I didn't have lupus (thank God) but was convinced that his course of treatment - or lack thereof - was not doing me any favours. At the time I was on 8 aspirin a day, and then had to take medication for the minor ulcer developing in my 16 year old stomach. The ironies of taking medication for my medication.

At my appointment a few weeks after I got back from the conference, I demanded a referral to Sick Kids in Toronto (I lived in Brampton at the time). Picture a 16 year old demanding a referral for treatment. My mom sat beside me in silent support. With a bit of time and experience with the medical field, I have learned that all doctors are not created equal, and he didn't have a clue. It was an early lesson on being your own health care advocate.

That's how I found myself in a preppy button down cream and navy plaid long sleeved shirt with walking shorts and penny loafers (including the penny) at the Sick Kids rheumatology clinic with a diagnosis within 30 minutes. I remember exactly how I felt (and what I wore) in July of 1991 in the examining room with my parents. I was perplexed that in 30 minutes I could be diagnosed, when the internist had no clue after 4 months.

It was the day that shifted me, my life, my focus and my trajectory permanently. Certainly makes the top 5 worst days of my life, although at the time I didn't really see that. I was simply grateful that relief was in sight.