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.