Victory Lap

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

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

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

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

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

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

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

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 my love 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 and fitness requirements.

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

As Megan’s father I felt that I had failed her. As her father it is my responsibility to protect her from danger as she grows up. I felt 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 my daughter’s pain.

Fast forward 20 years.

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

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

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

Sometimes, you can get what you want...

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?

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

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

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.

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

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

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

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

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

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

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

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

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!