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...