How big of a deal?

I'm back from vacation (East Coast of Canada - very beautiful, I've never been before), and have had lots of time to think and reflect in the 4,200 kms of driving that we did in 10 days.

Some days, my RA seems like quite a small deal. Life is humming along, my joints are good, no side effects in sight. It's just all tickety-boo. No big deal.

Other days, weeks, months, it is a very big deal. I am tired. I am flaring. I'm having side effects from my meds. I feel physically and emotionally like crap.

Where is the balance? How big of a deal is it? That is what is bouncing around in my head. I don't want it to be a big deal - but it is. I've spent the majority of my adult life trying to put my RA in a neat and tidy closet and closing the door, putting on the padlock and all but throwing away the key. I didn't really talk about it. I didn't really address it. I took my meds, went to my appointments and life carried on. I didn't discuss it with friends, co-workers and barely my family.

And then my life and my RA started intersecting. I wanted to have a baby - so off to the rheumatologist to take me off some meds (methotrexate) and put me on some meds (more Prednisone). And then I was pregnant and considered high risk, but both of my pregnancies went along quite well. I didn't flare, nor did I have a remission. Par for the course.

And then I couldn't really wash my hair that well. And I couldn't really lift my arms up that high. And then I had my shoulder replaced.

Looking back, I think my appointment in December 2008 with the Orthopedic surgeon (when I was told a joint replacement was in order) was one of the defining moments of my life. Pretty big statement, but it was a pretty big day. Up to that point in my life, I don't know that I really understood the magnitude of the disease and it's role in my life. I spent so much time trying to not let it have any part of my life, and I dismissed and downplayed any part it that may have impacted my life.

I have RA. It hurts. It impacts every aspect of my life. My marriage. My children. My friends. My childhood. My future. Some days more, some days less. But it is always there, lurking like a shadow. I don't want RA to consume my life, but I am moving closer to finding the right amount of space for it in my life.

Wonder Woman

Wow, do I feel awesome! How many times do you read that as an opening line for an RA blog? I feel on top of the world. I can conquer 2 kids, a messy storage room and have energy leftover for cooking, cleaning and some working from home. In sum - I am on fire. And my joints are not.

Welcome to the wonderful world of short course, high dose of Prednisone. Oh, the energy. The freedom of movement. The freedom from pain. The freedom to plan. Did I mention the energy?

After a pain-filled, soul-searching two months of 2 mgs of Prednisone, I realized that it is just a number, I value the quality of my life over what my current Prednisone dose is, and I needed to get over my frustration of not fully getting off Prednisone and face the fact that I was flaring and there was nothing else for me to do, other than increase my dose. So after a call to my rheumy, he suggest 10 mg per day for 2 weeks, 7.5 for 2 weeks and 5 until I see him.

This has been a tough pill for me to swallow. I read other bloggers experience with getting off Prednisone as they conveyed their frustrations and thought, "that, of course, won't happen to me", fully expecting that I would march down the road to being Prednisone-free in 10 smooth months. I had a plan, afterall, and I am a planner. What could possibly go wrong?

Well, as usual. RA had other plans for me, as it usually does. So I am now enjoying my Prednisone-induced pain-free time, knowing that I will try again. And again. And I will be free one day, just not today.

Denile is more than a river

Denial is a state of mind, and a lovely place to live, I might add. For a few weeks (months?) I have been feeling a little under the weather. Less energy, pain in my feet which has now spread to my right hand. I wake up with a claw-like right hand that takes some coaxing to get moving in the morning - and it seems to be taking longer and longer for it to get going. I can see the puffiness and feel the pain. This morning I found myself asking my son to be careful with my hand - and that was an hour after I woke up. Hmm, that was a bit of a wake-up call for me.

I think I've been in denial about this flare for a while. I have moved passed "compromising" with my Prednisone, and have gone to full "capitulating". I am taking 2 mgs per day of Prednisone and still taking a double dose of Dicofinac. And am trying to talk myself of out of calling my rheumatologists' office to move up my appointment from mid-July. I am also trying to ignore the fact that certain shoes (even my trusty old runners) make my feet scream because they are squished and Crocs or flip flops are my best friends.

I've been dealing with RA for 19 years and still I am baffled as to why I flare. In my mind, if I get enough sleep, don't drink too much, don't over or under exert myself, eat well, take my meds, lower my stress and laugh a little that I will somehow manage to not flare. It seems that my RA isn't responding to my formula for health. And it's frustrating.

It's not my worst flare, it's not my best, but a flare by any other name still hurts the same.

Compromise

Ever since I moved to 1 mg of Prednisone per day, I've been struggling with various joints. It's now getting onto 7 weeks, I just haven't been moving well - creaky knees, sandpaper hips, curled up fingers. In late March, I talked to my rheumy and we agreed to change my Diclofinac to Naproxen and see how things would go as I didn't think the Diclofinac was doing very much. Well, they didn't go much better with the Naproxen and throw in some stomach issues, to boot. So after a call to my rheumy, he suggested I take my Diclofinac twice daily. And I move my prednisone up to 2 mg. I said no to the Prednisone but yes to the increase of Diclofinac.

The Diclofinac is not doing much better at two times per day . . . and it got me to thinking about my relationship with Prednisone. I have the perception that Prednisone is the root of all evil and the giver of life at the same time. I do not like all the side effects I have experienced and some I continue to experience, however I love the way it helps me move significantly better.

I talked to my hubby - his thoughts were that it is just a number (2 mgs instead of 1 mg) and my quality of life would improve. In the end, he is right. It's just a number and I shouldn't get too attached to it. I will get off Prednisone soon enough, but not this week or this month. I think I am holding on to this so much because it is the one thing that I can control, and while it doesn't make sense to live in pain because I want to take 1 mg of Prednisone, it seems that is what I am doing.

So, I compromised (caved?). I'm alternating days of 1 mg and 2 mg. I took my first 2 mgs last night before bed and woke up a new woman - well at least there was no obvious pain and I didn't creak as much as I used to. Damn you, Prednisone, for making me feel better . . .

My 35th Birhday

Sunday was my 35th birthday. I am now 35 years old. I now have to check off the 35 - 49 box on random surveys. Or at least the ones where I get a free Starbucks beverage. Hmm, Starbucks. I digress.

April 25th was eventful. At midnight I was in a bar supporting my soon-to-be sister-in-law through the rite of passage known as the bachlorette party. There were about 10 of us, and most were closer to her age (27) than mine. I would have felt old, except for the dodgy 40 year old men who were leering at all of the younger women. We had a super time.

Needless to say, on Sunday I was a little tired and sore. And my feet hurt, a lot. So much so, that 1/2 way home on my 3.5 hour car ride from Toronto to Ottawa, I pulled over, called my hubby and cried. I was wearing running shoes done up as loosely a I could, and they were throbbing and inflamed. After a good cry and a few rounds of "how the hell am I going to get home?", I pulled myself together, got a Timmy's Steeped Tea, took two Tylenol and just kept driving. What else was there to do? I think this is reflection of my life. Sometimes you just need to suck it up and keep going - because there aren't any other options.

My day improved when I got home - the kids came out running to see me and had lots of hugs and stories about their weekend. I had a lovely birthday dinner, home made cards and some thoughtful gifts. And then a migrane which lasted for 12 hours.

My birthday brought a little from column A and a little from column B. There is happiness and joy, and at the same time there is pain and frustration. I think my birthday reflected the balance of my life right now. I'm hoping for a little more from column A (happiness and joy). We'll see how the year unfolds.

My new job

My new job started this week - I am now a full-time mom. Yeah! I worked for my employer for almost 10 years, and felt I was missing something at home - so here I am, at home. While I was only working 3 days a week when I finished, there was a toll on me and my health. I think I just wanted to slow down. I wanted to make sure that in 10 years, I didn't look back and wish I had spent more time at home with the kids. I know I am fortunate to be able to stay home with them and I'm glad I am taking advantage of this opportunity.

The kids just turned 3 and 5 - along with their birthday parties (on back to back weekends, as their actual birthdays are 4 days apart - whew, that was beyond busy), came their annual check-ups with our family doctor. All is well, but every year we go, I have a fear that she will find something with their joints - and to be honest, I check them from time to time myself. I know that the cause of RA is unknown, however there is a small, but irrational, fear that they will live through what I have. And I do not want this part of my life for them.

Patrick (my 5 year old) had to get a booster for a few of his immunizations, and he did not take his needle well. On the way home he went on and on about how he was never ever going back to Dr. Karen's. And then out of the blue, he asked me if I still take needles. It's funny what kids remember - we had talked about it 3 - 4 months ago, but they have minds like steel traps. So I told Patrick that I take medication to help me feel better. That's my line for now, I'm sure it will change as his capacity to understand grows. He said he didn't want to be me and take needles every week. In my head I agree with him - sometimes I don't want to be me either...

I have seen a glimpse of the pain of being a parent of a child with RA - when I was younger when my dad created the pain machine and recently, when I had my shoulder replaced last year.
When I was post surgery, I was able to leave the hospital room with my parents, so we went downstairs to the atrium at the Ottawa General hospital. I drank a Tim Horton's Iced Capp with a tube sticking out of my neck and my arm in a sling. Nice. It's the feeling of helplessness as a parent - knowing that all you can do is sit there, be there and hold their hand. I'm grateful for my parent's ongoing support through my ups and downs and I hope that I don't have to face those particular parental challenges, as I don't know if I would be as strong as they have been.

Oh, med students . . .

I saw my rheumatologist yesterday. Good visit. We checked-out my mini-flare, my joints, and a quick physical exam. To help my through the final stages of my Prednisone reduction I will be enlisting the help of an old friend - Naproxen. The appointment went well - except for that pesky med student. To be fair - he is a doctor of Internal Medicine going for extra training in Immunology. So not a super green 3rd year med student - but still seemed just as green and clinical.

Now don't get me wrong - I always agree to have med students watch procedures, perform procedures, take my blood, interview me, perform joint injections - the whole nine yards. This time, however, it was beyond awkward - he just didn't get RA. Here are a few excerpts from our conversation.

Med Student: Are you sure you're flaring? Because I can't find any inflammation...
Me: Um, yes - I am flaring and there is inflammation in the following joints...

Nice. I've had RA for 19 years, but - according to him - perchance I can't recognize a flare when I see one. Perchance he can't recognize a joint if he sees one.

MS: I see you are on Enbrel. Well, Enbrel is a biologic that -
Me: (smoothly cutting him off) I'm a fairly well education patient and I've been on Enbrel for 10 months. I know what it does.

Seriously? Did he honestly think that I would take a medication, any medication, that I didn't know what it did? For 10 months?

MS: I don't see why we don't raise your Prednisone back up to 2 mg
Me: I just explained that I've worked for the past 10 months to get off of it - I'd rather look at NSAIDs as an alternative. I don't want to be on Prednisone anymore.
MS: It's not that much Prednisone.
Me: For whom?

The Med Student seemed like a nice guy, he just treated me like a number and was quite clinical about the whole thing. A + B = Flare. Not matter what the patient actually says.

He hadn't reviewed my file (I know, because I asked in one exasperated moment) - not even the last letter to my GP updated on my current status. Sigh. I usually have a good amount of patience for this kind of thing, but I couldn't help feel that he was wasting my time. I knew a 5 minute conversation with Dr. T (my rheumatologist) would solve everything - and quickly. And in the end it did. Whew, that was as exhausting to write about as it was to experience it.