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.