How am I gonna be an optimist about this?

I give up. I'm done. I'm out. I just want to curl up in a ball and cry for a few days. I'm sad. I'm mad. I'm in shock. I'm incredulous that this is my life. A Hollywood tear-jerking drama has nothing on me this week. You really can't make this up.

It's been 22 years of pain, inflammation, doctor's appointments, drugs and that constant knowing that your life is likely a little less because of something you had absolutely no control over. I'm tired. I've lost my fight. It's been a tough 22 years, and I'm just bone-weary tired.

I've got scotch and a sad music on. I spent much of last week working a lot and informing colleagues, family and friends of my impending surgery.  To say it was an emotionally draining week, would be an understatement. I'm exhausted. I can't take anymore sad eyes staring back at me as I explain that the shoulder I just had surgery on a mere 21 months ago needs further repair. I feel like I'm talking about a life other than my own. I have a detached third party view - like it's not actually my life. But it is.

It's not the surgery itself that bothers me. It's the mountain of pain, dependence, disability, rehab and feeling like a lesser person that looms behind the surgery date that I'm overwhelmed and saddened by. This isn't my first rodeo. It's my 3rd. Yes, you read that correctly - 3rd shoulder surgery in 4 years. Have I mentioned I'm 38? It's just so unfair. There. I said it. It's unfair. I'm so very angry with the universe. I'm not ready for the "silver linings" conversation. I'm not interested in being happy or seeing the bright side of things right now. I just want to wallow. With a giant bottle of scotch. Beautiful 16 year old Glenlivet. Not a long-term solution, but this week it seems to be doing the trick.

I'll pick myself up. I always do. But for now, I just want to be sad. I was trying to find the most melancholy and gut-wrenching song to attach to this post. But over the weekend I found some lyrics and a song that sum up my situation. Bastille's "Pompeii" where they ask "How am I gonna be an optimist about this?". Excellent question. I haven't figured out the answer yet.

You've got to be kidding me.

It's been months. Again. And it's been a tough couple of months for me. I've been avoiding the keyboard, thinking that once there is a crack in the dam, it's just going to all come out. One giant rush of pain and emotion. So here's my best effort to say what I need to say and keep the dam intact. I feel like I have to start somewhere...

On the plus side, I've been running and biking. Feel strong, great - sporty, even. The downside is my right shoulder has become incrementally increasingly painful, sore, swollen and less usable.

The tipping point for me was washing my hair. One day, I couldn't manage to raise my right arm high enough to wash my hair. This is the same arm that I had a partial shoulder replacement done about 20 months prior. And I found myself crying in pain and frustration in the shower in the middle of June. Sobbing, really. It's funny how joint mobility is a slippery slope down, until one day you realize "Wait a second, I used to be able to do that". And now you just can't because it simply hurts too much.

Back to the surgeon I went in late June, and I took my 8 year old son this time. I'm slowing trying to introduce him the medical side of my life at an easy, "it's no big deal", introductory rate. It was also an insurance policy - I was less likely to break down at what was likely to be some pretty crappy news if Patrick was with me.

We met the surgeon, went for x-rays, bloodwork and met the surgeon again. X-rays showed bad news - the glenoid (socket part of my shoulder) has further eroded and thinned since last x-rays.

Taking a step back - I only had a partial shoulder replacement in November 2011 because there wasn't enough bone there to attach a plastic piece to make a "total" shoulder replacement to my socket (glenoid). So, to find out that the bone is thinner only two years later is really, really bad.

There is also an outside chance of infection which would case all this pain as well, hence the bloodwork and a date with radiology to aspirate cells from my shoulder. The plan being rule out infection, and then we can look at what's left.

I've had dozens of joint injections in various locations over my 22 years with RA. They are slightly uncomfortable, but they offer the benefit of lovely steroids going directly into your joint helping with pain and inflammation. I've never actually had cells pulled out of my joint before, but I assumed the process was somewhat similar.

Oh. Dear. Was I ever wrong. Possibly the most painful medical procedure that I've been awake for to date. And I've had two c-sections. Two large needles, into which six smaller needles were inserted reaching to my shoulder to get cell samples. Stay still. Don't move. Don't scream. And pray that the local anesthetic works well enough. Those are 20 minutes of my life I'm happy to never re-live. It was absolutely horrific. And the best I could do was cry silently and apologize to the radiologist. Apologize, why? I don't know. I'm Canadian. I generally apologize for things that are not my fault.

And cue family vacation the day after this procedure. I didn't feel too bad directly after, but the following couple of days I just fell apart. My shoulder screamed in pain and I didn't bring any good meds (read: narcotics) with me to help. I took the max doses of Tylenol and Ibuprofen, but it wasn't enough to control the pain. Finally, we were in a larger town and I bought Tylenol 1's from the pharmacy, which seemed to help. I'm now a registered narcotics user in the province of Prince Edward Island. Super.

It's been a long time since I've been in this much pain. I'm accustomed to stiffness, swelling, being sore - but actual acute pain? It's not something I'm used to. And narcotics? I've been a prolific anti-arthritic and anti-inflammatory drug user for the past 22 years. And codeine? That scares me. I'm not used to narcotics and I'm not comfortable with them.

I just can't believe I may have to have another surgery. It hasn't even been two years since the last one. How am I not done with all of this yet? I've done my time, clearly.

I've been listening to a lot of new music this summer and attending outdoor concerts. I've seen Macklemore & Ryan Lewis, Imagine Dragons, Tegan & Sara, Jimmy Eat World (twice!), Dixie Chicks, Wheezer (best show) and The Black Keys. It's been a great summer - musically. Right now, Imagine Dragon's "Demons" is speaking to me the strongest. I have demons from the past coming back to haunt me. More surgery. More pain. More of the same. When does it end?

Pretty "Special"

A couple Thursdays ago brought my first visit to a neurologist. Nice. I am slowly but surely making my rounds to the various clinics and modules that the Ottawa Hospital has to offer and accruing a gaggle of specialists at an alarming rate.

Rheumatologist. Obstetrician. Orthopaedic Surgeon. Opthomologist. Neurologist.
How did I land in the Neurosciences Clinic on a Thursday afternoon? In a pre-op appointment back when I was heading for shoulder replacement surgery in 2011, I had x-rays taken of my neck. The surgeon wanted to be aware of any issues that might exist in preparation for the surgery. As it turns out, there are indeed issues with my neck, which showed up in my films.

In a clumsy way and over-explanitory way, one of the residents talked about my neck and the issues that might be there in one of my pre-op appointments. But when asked specific questions like do I have restrictions and what does this mean, he fell back onto me needing to speak with a specialist. Okaaay. And that is where things sat for well over 2 years.

Flash forward to 2013 and a sunny April afternoon. Dr. Da Silva was a wonderful man with kind eyes and a gentle manner. He asked a set of questions, checked my balance and reflexes, but since I don't have any symptoms there wasn't much to talk about. I went for a fresh set of x-rays and he compared them to the ones from two years ago. No real progression, which is good news, but I do have "C1 - C2 sublaxation" and need to come and see him once a year for the rest of my life (well, his life really, since he is older than me). I have a loose ligament at the top of my spinal column which, if it progresses, could require treatment and possible surgery so it doesn't compress my spinal cord. Yep, that's all. Sounds so simple when you type it, but the future is scary if this progresses.

In closing the appointment, we talked about restrictions and activities that I should not be doing. I've never had restrictions before. Generally, with RA, an "as tolerated" approach is taken. Until a year ago, I wasn't able to do much with my body anyways, so it wasn't an issue.

So no skiing, no mountain biking, no activitiy where I may fall at an awkward angle and damage my neck in the process. I can set skiing aside fairly easily, as with two crap shoulders and a fear of falling, it was never a sport I seriously considered. But the mountain biking was tough to swallow. I started biking last year, and really enjoyed it, and planned to upgrade my bike this year, potentially to a mountain bike. I bike on trails in the neighbourhood, some with gravel, rocks and roots and they are level for the most part. I'm not barrelling down a mountain on a bike a break-neck speeds (literally). But still, this means I can't go on the side trails that are more challenging.

It's not the actual activities that I'm upset about not being able to do, it was more the restriction on what I could do, setting aside if I wanted to or not. It's the taking away of the possibility and opportunity. The further shrinking of the field of what I can do. It's seeing my future slowly but surely getting smaller. And having one more thing on the horizon that could go wrong. It's just one more thing.

The appointment itself was great. What the appointment respresents for the future is not. A friend of mine recently introduced me to an alternative band called Vampire Weekend. Ok, setting the band name aside, they have some great music. I've latched onto "Giving up the Gun". It's a song about going back to your roots and re-kindling your past passions and hobbies that you've lost. This is a good juncture to focus on what I can do, versus what I can't controll.

Pincushion

I'd like to think that I can take my lumps. I'm tough. But some days, your pain tolerance and patience run thin and everything just goes to hell in an handbasket. Last Tuesday I went for my monthly infusion of my wonderdrug. Usual day, usual time, usual nurse. Nothing new here - except it was a little colder outside, and my veins were not as prominent as usual. But I live in Ottawa, and unlike parts of our winter where it was -40, a cool spring day of 0 degrees should not send my veins into hiding.

And hide they did. Four, count em - FOUR tries it took to get an IV line into me. It was demoralizing and depressing, painful and unpleasant and overwhelming upsetting.

In the end, the nurse wrapped my hand in a warm compress to bring the veins up, and that finally did the trick. But not before there were a reasonable number of holes in my hands, wrists and arms to make me look like an IV drug user. Well, ok, not like an IV drug user - I'm sure they hide their needle marks more creatively, but I certainly felt like a pincushion. And I felt small and helpless, which is not a feeling I am used to, comfortable with or interested in repeating.

The whole experience was a reminder that I do live with chronic illness and that it sucks at times. It's painful and difficult and unpleasant. And it's mine to deal with.

A friend of mine introduced me to the Black Keys a little while ago - where have they been all my life? So while I was licking my IV wounds lying in my armchair waiting for the IV drip to work its magic, I put some tunes on - Lonely Boy. A rockin' song to get me through my less than rockin' day.

Everyone's got something

My son has been in speech therapy on and off since he was just about 3 years old. At first it was for a fairly significant stutter, and that improved. Then it was for sounds, sound blends and everything to do with the letter “s”. He is still part of the speech therapy program at school in grade 2. Speech therapy at a young age is designed as learning through play. I can’t count the number of times I’ve played Snakes and Ladders to promote proper “s” sounds – speech therapy had always been fun.

This year Patrick was resisting going to the speech therapist. He was being pulled out of class, and his friends were asking why. He was embarrassed that sometimes his friends and teachers didn’t understand him, and embarrassed to be pulled out of class. He noticed that he was different from all the other kids and was uncomfortable with this new-found knowledge.

So began the “everyone has something” chats – my way of explaining that no one is perfect and everyone has a challenge that you may or may not know about. We talk about his friend who has diabetes, and how Matt injects many needles a day to keep him healthy. We talk about people who need glasses, wheelchairs, canes and seeing-eye dogs. We talk about friends in his class who have a hard time playing with other kids because they don’t know how to share, or give and take.

And finally we talk about how mommy has bad shoulders and she needs medication and “new shoulders” (joint replacements) to help her out. The theme being that no one is perfect and everyone has something that they are working on. He is working on speech and I am working on my shoulders and that's ok.

I know what my something is. I’m comfortable with it. It’s taken years to come to this place in my life – literally, years. I think it's important for kids to grow up and realize that not everyone is perfect, and everyone struggles with issues - mental, physical, social or economic. I'm hoping that by being more open about my struggles, the kids will be able to come to me with their issues and realize that everyone struggles - and that's ok, it's just part of life. To this end, Pink's "Perfect" has always spoken to me - "you are perfect to me" - I think we all need to remember that more often.

Just like everyone else

I plan all kinds of things in my life - dinner parties, kids parties, meal plan for the week, summer vacation and what my work projects might be for the next six months - but planning to run a 5K race in September - 6 months away? Um, no. That has not been part of my planning repertoire. Or the 5K race I signed up for here in Ottawa in May - that I signed up for last October.

Right around now, 22 years ago, my shoulders started hurting with pain and stiffness, and it was hard to get warmed up for volleyball practice in the morning. And then volleyball season finished and my feet hurt, then my knees and things went downhill from there resulting in an RA diagnosis in July.

But for the last 21 years, I haven't really planned much of anything in terms of physical activity, it was more planning to avoid, as opposed to planning to do. I planned where I could take rest breaks, how much walking I would have to do, how tired I would be, when I could nap,  how I can manage juggling work, kids and a house.

I've spent the past 21 years in pain, inflammation, doctor's offices, blood clinics, with joint injections, with med students, with nurses, in the hospital, in the clinic, at X-rays, with crap shoulders, bad wrists, tender feet, swollen knees and pumped full of drugs that may or may not cause cancer have caused hair loss, weight gain, headaches and irritability. And I managed to work myself through every test, procedure, needle, surgery, consult, and every bit of poking and prodding.

As I read this it does sound quite depressing. I'm not one for sympathy. Everyone has challenges, I know what mine are and I can manage them. But, yes, parts of my life have been pretty lousy, and the majority of it has been perfectly wonderful. But it was mine to live through and manage, and I did and I have and will continue to.

Even a year ago, I would have laughed at the idea of running 5K or taking less medication. It seemed impossible. I was barely able to get through an average day, let alone adding in anything that might drain my limited energy further. I've been on my wonder infusion drug (Actemra) for just over a year, and I can say without hesitation or overstatement that it has changed my life. I feel normal again. I feel just like everyone else. And if you've never lived with a chronic illness, you cannot understand how preciously wonderful it is to be average. Normal. Boring. Pain-free.

But now that I'm healthy, I'm having a hard time coming to grips with it.  Let's be clear - my version of healthy is different from most other people's. I still go for monthly infusions of designer drugs to the tune of $2,200 per month. I see a surgeon once a year, and a rheumatologist 3-4 times a year. I have routine x-rays and bloodwork. I take some anti-inflammatory medication, but other than that I am healthy. That's next to nothing for the average RA patient.

Being stable is the ultimate goal of anyone with a chronic illness - so why am I struggling with this? I'm so used to being sick, I don't know how to be healthy. I don't know that I can plan. I also am afraid to plan, as I'm always looking over my shoulder. I mean, how long can I be healthy for? I know someday the medication will stop working - but when? 6 months, 3 years, 6 years? I'm afraid to to get used to the idea of planning, being able to plan. I'm afraid that as soon as I become comfortable with the idea of planning, all my good health fortune will vanish and I'll be back to where I was. Which wasn't so bad, but now that I know better health exists for me, I don't want to return to pain, inflammation and the pills.I think this is my way of self-preservation. I can't lose what I don't invest.

This has been an emotional knot that I've been working on for a while. Today brought a visit to my rheumatologists office, and the usual introspective and melancholy thoughts of RA. And I couldn't get over the contrast - I'm feeling fantastic physically, but conflicted about that emotionally. Best song for today is some U2,  Stuck in a Moment. The last line stayed with me "It's just a moment. This too shall pass." I'm feeling less stuck already.

Choices

Some choices, you know the immediate consequences. Some take a few days, weeks, months or lifetimes to find out if you made the right choice. But therein lies my post. You sometimes do not know what the right choice is, and you'll never find out. You make the best decision that you can at the time - rely on your knowledge, information available and instincts.

When I think of long-lasting, irreparable, big-consequence choices - I think about the choices I make for my health and care of my RA. Today I had a terrific headache. All my usual plans of attack didn't work, and I know it is a side effect I experience from my fancy infusion drug, Actemra. As with most drugs for RA in the "biologic" class, there is long and scary list of potential side effects, including increased risks of some cancers. The side-effects I can pin point for me are headaches, hair loss and of course not healing as well from bumps and bruises.

There are differing viewpoints on natural vs. pharmaceutical treatments, long term drug effects vs. quality of life. I find myself frustrated at times when friends, co-workers or strangers comment proudly on the fact that they "don't like to take pills". I find myself biting my tongue, as I don't have that luxury in my life. If I didn't take pills or medication, there is a decent chance I would be curled in a ball of pain in my parent's basement for the past 20 years. I've chosen to take the drugs, live with the consequences - whatever they may be,  and life my life to the fullest. I am concerned with how all these medications over all these years will impact my body. But I balance that out with making the best decision I can at any given time.

One of my favourite songs from last summer was The Fighter by Gym Class Heroes. I ran miles and miles to that song, as I was training for my 5K race. I will continue to make choices and fight for my health. It's been 9 months that I've felt "normal". I feel like most other people do. It's amazing. And I won't be letting that go anytime soon - so I choose to take the drugs and keep running and fighting.