Wednesday, December 22, 2010

White room, dark thoughts

I think most of my rheumatology appointments make me stop and pause. Here you are, in the white room, waiting for the white-coat doctor with nothing except your thoughts to entertain you. I find that I pause to think about my RA, and how it brought me to this room at this time. It's just so upsetting when you stop to think of the totality of what I've been through and what it has cost me.

In life choices that you make, you never really know the road not taken. You don't know how your life would have turned out if you had not started a job, made a friend or been diagnosed with a different disease - or no disease at all, for that matter. But every now and then I catch glimpses of what life might have been like and I feel a strong sense of loss. I see my friends who are active, have energy and don't have to portion their day out based on the energy they have for what they want to do vs. what they have the energy for. Why do I have to choose?

Here's the thing I've been wanting to write about for a while, but the words just haven't been there. I am so ANGRY with my RA. My life, my job, my children, my husband, my parents, my brother, my friends have all been impacted by this disease. I feel that some of my life choices are not my own and most days I put on a smiley face and get through it - whatever the "it" happens to be that day. Not today. A storm has set in, and I can only see the black clouds, not the silver lining.

I am jealous, angry, grieving. I am bone-weary, empty, afraid.

I am glad to get this out of my system. As I've written before, I'm grateful for the one-way communication that a blog affords. It may or may not be heard, but I feel better having said it.

Saturday, October 30, 2010

Happy Blog-iversary!

It's been a year. Wow! Yeah for me!

I've taken some time to read over my musings from the past year, and take note of how I've grown and things have changed. A year ago I was literally tormented by needing to resign from work - now I am happily employed in the hi-tech world working with more great people. My family is great, I am on roughly the same medication, swapping out Enbrel and inserting Humira, and hoping to reduce some Prednisone. But really, what's new about that? Reducing my Prednisone seems to be an ongoing theme throughout my posts - like that closet you never seem to clean out. I'm sure I'll get there someday, but right now I'm not in a big rush...

So what is the biggest difference?

I think focus and control. I am less focused on my arthritis and more focused on my life, I have found a level of balance I am comfortable with. While life is busier with working almost full time - I feel I have more control over it. Work offers flexible hour, which is new for me. If I am 5 minutes late, there is no issue. I can take a longer lunch, I can come and go when I need to and they know I am a professional who will take care of my work. This is new and wonderful for me. Small amounts of control can make a big difference.

I'm proud of what I have written. When I re-read it, it certainly continues to reflect me and my journey. I am grateful for the support of my RA blogging friends. Your comments and posts remind me that there are others out there with the same struggles, frustrations and sources of humour.

I read a post tonight (ok, I'm behind on my blog reading), but Lauri Grassi had a post almost two months ago about MTX bubbling up over her leg, and I laughed out loud. It happens to me all the time and it's comforting to know it happens to others.

Thank you for listening, and commenting. I'm looking forward to another year of growing, learning, making new blog friends and keeping up with the old ones.

Saturday, October 16, 2010

Well, that was kinda stupid

So, I am usually a pretty smart cookie. I am intelligent, educated, intuitive, learned person. Most of the time. About a month ago, I started my Humira injections. And I incorrectly placed and injected one of my vials. Umm, that was an $871.00 mistake. The auto-injector is different from Enbrel (which is idiot proof, as it turns out, since I didn't have a misfire in 15 months of weekly injections).

So I used the 2nd injector of my 1 month supply and thought I would deal with it later. And "later" never came. And it was a sad Thursday before Thanksgiving almost 4 weeks later, when I was in so much pain at work at 5:30 pm which prompted me to call my pharmacy and renew my prescription.

I am working now, and much busier. If all my family members show up where they are supposed to, when they are supposed to and everyone is fed, I am considering that a successful week. But I can't recall a time when I was too busy to take care of my health. I could have called the drug company and asked for another dose. I could have called my benefits provider. I could have done something. But it wasn't until the pain kicked in that I actually did something. I'm still not sure what to think about that, it's just so not me.

On a side note, the week after my first Humira injection I felt like a rock star - I'm looking forward to what the next couple of months have to bring.

Monday, September 6, 2010

What makes a good appointment?

I had one of the best medical appointments of recent memory last week with my new rheumatologist. He talked, I listened. I talked, he listened. It was an actual conversation between two people on equal footing. Communication, understanding, and a dash of compassion made for one fantastic discussion about my healthcare.

Dr. Kraag started with asking me about myself. What a novel idea. Married? Kids? Job? Medical history? And he didn't outwardly groan when I mentioned I had a list of things to talk to him about. Hey, I was almost 2 months overdue for an appointment, there was a backlog of items on my list!

We talked about my Enbrel and how I thought it wasn't working. I have been on it for 15 months and am not much further ahead physiologically than I was before taking it. I am significantly behind financially - we only had a co-pay of 80%. In my new job, we can coordinate benefits, and I will be 100% covered. So, Humira is next on the list, pending approval from my medical plan.

We talked about Methotrexate injections vs. oral dosing. A big shout out to Laurie Grassi and her Frozen Woman blog, for posting about MTX injections and providing me with information on a study comparing the two methods of administration for this drug. The results of the study indicate a higher level of absorption through injection over oral dosing, without a significant increase in the number or severity of the side effects.

It seems odd that I would ask my doctor to self-inject another needle each week, but I did. The first dose took me 15 minutes to administer. 14 mins and 45 seconds was me counting to 3, and then starting the count again until I mustered up the courage to "take the plunge" as it were. Amazingly, it hurt much less then Enbrel injections as the needle is very fine. I won't go as far to say that it was enjoyable, however it was much more tolerable. Next week should be much better.

We talked about my joints, their damage and he took a look at all of the x-rays the hospital had on file for me. A picture is worth a thousand words, so I'll share a few of his observations with you:

"Do your wrists hurt? No? Well they should, you have no room in there."
"Wow, Lapner did a great job on your shoulder."
"Uh, hunh. Look at those feet. Well that's not good, is it?"

While this was hard to hear, it was great that he had direct access to my films and could pull them up instantly. My last rheumy was in an office, not attached to the hospital, so all he would see is the radiologists report. I think there is something to be said for seeing the pics first hand, in my case the x-rays are rather startling.

We talked about Vitamin D, Calcium supplements and Actenol. He was professionally surprised (read: shocked that my rheumy didn't have me on a preventative plan for osteoporosis, but didn't say much because they are colleagues). I was going for bone scans on a regular basis due to the 16 year use of Prednisone, however this is a reactive test, not a preventative treatment. So, now I am on 1000 mg of Calcium and Vitamin D, and taking one Actenol per month for to keep my bones healthy and strong.

I have a note for an ergo keyboard for work. I have a spring in my step. I have an appointment scheduled in 3 months. I have a plan of action I am excited about. I have a glimmer in my eye that soon, very soon, Prednisone and I may be parting ways on a permanent basis. I have a super new job. I have some hope that my health care moving forward will be proactive and preventative not reactive and palliative. This makes a good appointment.

Wednesday, August 25, 2010

New job, new house & new rheumatologist

All in one week!

New job - I am back in the workforce on a 15 month contract working 9 of 10 days. While leaving the kiddies is hard, I was craving adult interaction of a business kind. The company I work for now has flex hours (yeah!), 90% drug coverage as opposed to the 80% (yeah!) and is closer to home. A winner all around. Oh, yeah, and the work seems really good as well.

New house - we signed on the dotted line last Saturday for a new home to be built in the same area of Bridlewood (a subdivision in Kanata, which is the west end of Ottawa) where we live. We will move in next August. Making 1000s of decisions about paint, tile, hardwood, electrical and hardware will be time consuming and exhausting, but I hope it is mental exhaustion only, I'm working now - no more afternoon naps!

New rheumy - well it seems a few weeks ago, I received a call from my rheumy's secretary with some not-so-hot news: the office will be closed for 6-9 months and my upcoming appointment is canceled. Go back to your GP for a referral. Oh dear.

Worst phone call ever (ok, that's an overstatement, but it was likely the worst phone call of the month). Nothing drives fear and emotion than the feeling that you don't have access to the health care you need.

So, being both scared and emotional, I cried. I cried to the next 2 people who called me that day. Then I located my bootstraps, pulled them up, and started surfing the web for rheumatologists in the Ottawa area. Several came up on, and I selected one and called the office. I can be a fantastic conversationalist, so I thought I might talk my way into an appointment. Worth a try, I thought.

Well, the number I called was the Ottawa Hospital, and it seems they have an Arthritis Centre. And somehow, living here for 11 years, I never knew this place existed. I felt a little dumb. Actually, very dumb.

The upshot is that I spoke with the clerk there, very nice man, who told me if my family doctor put the referral as "urgent" I would be seen in a month. Awesome. I went off to my family doc a few days later and a phone call with an appointment followed a few days after that. Painless some might say. My appointment is next week.

I was on the verge of asking for a "file review" (read: I want another rheumy to look at my file because I am not convinced that you are the best doc for me) at my next appointment with my old rheumy, so this is a nice way to switch docs without an uncomfortable conversation.

I am 15 months into using Enbrel and I don't feel that much further ahead. Last year I was on 10 mg prednisone daily and 25 mg methotrexate weekly. Now I am on 5 mg prednisone daily, same MTX dose and Enbrel. Somehow, I thought I would be able to drop more MTX or prednisone, given that I am now on Enbrel.

I felt at times like a palliative care patient with my old rheumy. Like I should take my drugs, take my lumps and not complain too much. And that there were absolutely no other drug combos that would help me. So hopefully my new rheumy will entertain some other drug options that may lead me off some prednisone.

Lots of "new" in my life. I am thankful for the "old" who are supportive and loving and helping with all of these transitions.

Friday, July 30, 2010

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.

Friday, June 18, 2010

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.

Sunday, May 30, 2010

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.

Tuesday, May 4, 2010


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 . . .

Tuesday, April 27, 2010

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.

Saturday, April 10, 2010

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.

Thursday, April 1, 2010

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.

Monday, March 29, 2010

July 19, 1991

I was digging through some old boxes a few weeks ago in an effort to de-clutter my storage (read: junk) room and came across a small, brown paper bag that brought me to tears. It was from my first stay at Sick Kids Hospital in Toronto from 1991 - July 19th to be specific. And I read the label and I just sobbed. Has it really been that long? I wrote a post about how long - but somehow that little paper bag with a hospital label just knocked me flat - emotionally.

The other discovery was the contents of the bag. It was blessed oil that my grandfather had given to me when I was first diagnosed, and a hand-written prayer to go with it. My grandpa passed away 12 years ago, and I really only have memories of him - great memories. He had a rock-solid Catholic faith and I'm sure he prayed for me and my health. I miss him.

The grandpa memories combined with the totality of my RA hit me hard. Has it really been that long? I think I could write that question 100 times in this post with different inflections and never fully have the answer.

Has it been that long? Yes. Has is really been that long? No. Has it been that long? Really? Has it been that long? Seriously? Has it been that long? OMG. Has it been that long? @#!*. Has it been that long? Ouch. Has it been that long? (resigned sigh). Has it really been that long? (tears). And all those answers are followed by a sadness, emptiness, and a bit of defeat.

I can't help but reflect that the glass being a bit half empty - at least today it seems that way. I've had RA for more of my life than I haven't. I guess it really has been that long.

Sunday, March 21, 2010

Dinosaur Drugs

I was surfing a website which listed the arthritis medications which are currently in use and it listed a few that are no longer in use - in particular Gold Injections caught my eye. I was on Gold Injections back in the day - way back in 1991 - 1992. And now they discover they are not effective in the treatment of RA. Hmmm.

I went to my GP's office twice a week for over a year I would go to give a urine sample one day - they would rush it to the lab. The next day I showed up, and after a quick scan of my labs, I would get my shot. It was a pain in the butt (haha, it was an IM injection - typically in my glute). I was taking the injections in combination with another DMARD (can't remember which one, see extensive list below). Clearly the gold wasn't pulling its weight, as it is now found that Gold is ineffective in the treatment of RA.

Thinking back on all of my drugs over the past 18+ years, I seem to have been around the block once or twice. Sulphasalazine, Methotrexate, Arava (only a short time, the side effects and time I needed to be off it before conceiving scared me), Plaquenil (the most bitter tasting drug - ever), Imuran, Naproxen, Prednisone, Enbrel. Hmmm. Quite the list.

My current combo of Enbrel, Voltaren, Methotrexate and 1 mg of Prednisone seems to be ok for now. Writing this entry was like taking a trip down memory lane - revisiting old friends I met along my RA path. Whew, there are a lot of them...

Thursday, March 11, 2010

How are you?

For most of my RA life, I was of the opinion that when people asked "how are you" they really just wanted to hear "good". Most people don't want to hear anything else, it's a rather superficial transaction - most of the time. Some people want actually hear how you are - but not that many. Really. So, I provided the requisite answer of "good" (insert bright, but fake smile here) and kept trucking along with my RA on the down-low.

For those who really wanted to know, I try for a bit of honesty mixed with some humour to make it not as big of a deal. Even with close friends, I don't really talk about my RA. It can get depressing for me, let alone anyone else.

I'm not so sure I employed the best strategy, but I didn't really see another option. People don't really want to hear about it, so I really didn't talk about it. For years. To anyone (almost). And to see my life from the outside, I would doubt that you would know. But I knew and bottled it all up. Now I'm sorting through all of my feelings, thoughts, ideas and emotions about RA.

But, in some ways, I would be better served in my life if I actually told a few more people when I was having a crappy day and asked for help. It turns out - people like to help. Really. All you have to do is ask.

I think through blogging, sending my blog link to friends and family, I have started a dialogue about where I'm at and what's on my "RA" mind. I can talk, they can listen if they want to. It's a rather passive method of communication, and I'm more comfortable with that. And since I haven't really talked about it for the first 18 years of my diagnosis - some of these posts are rather overdue.

Monday, February 22, 2010

2 to go!

Not much reason to celebrate February when you live in Ottawa. Well, there is Winterlude and Beavertails (the yummiest deep-fried pastry with maple topping ever invented). But other than that - it's cold and February seems to last forever.

But there's a party in Megan's medicine cabinet, as I am down to 2 mg per day of Prednisone and heading for the home stretch. Wuhoo!! It's not been the easiest, but I think my utter euphoria of being off the drug may just carry me through the next two months. Seriously. I'm that jazzed.

The more I read, the less I like prednisone. I feel like I just woke up 18 months ago and really discovered what I was taking and started to ask "why". It seems the current protocol for RA is to use TNF blockers with a complementary DMARD and some anti-inflammatory meds as needed. It makes me wonder about my Rheumatologist. I've been "hanging out" on Prednisone for over a decade - and I didn't start to go off of it until I insisted. As previously posted, I have a love/hate relationship, but as the end draws near - I wonder about all those years and all the side effects.

I am seeing my Naturopathic Doctor for acupuncture and a fantastic massage therapist to work out some of my kinks. These treatments seem to take the edge off any hiccups each time I drop 1 mg. And Yoga. When I had my shoulder replacement, I was out of commission for a while, but I'm back and forgot how much an active Yoga practice really helps me. Going to Cuba also helped. Really. Something about no stress, a warm climate and endless beaches. But for now, I'm working through my bumps in the road with tools I have.

Wednesday, January 27, 2010

No end in sight

17 years, 6 months and a few days. Daily. Chronic. Never-ending. Infinite. Constant. Permanent. Yuck.

Here's the thing that has been on my mind recently - there is no end. There is no cure. I haven't seen a remission in a good long while. My meds are decreasing on some ways - reducing my prednisone - but I've also brought in some heavy hitters - Enbrel - to fight the battle. Overall, I'd say I'm up on the medication front. And this is to keep me comfortable. No pain-free. Not in remission. Just functioning at an "arthritic normal" level.

I used to believe that I was working towards some mystical place called remission - that one magical day my meds would decrease. I'm not naive enough to believe I could some day live drug-free, however fewer meds would be nice. I think I've given up on that dream and am working towards not taking more meds. I am aiming high on that one.

I know that since biologics have entered my life - and many others in the RA blog community - there has been a significant impact on overall disease activity. Problem is for me - I have 17 years of RA damage to contend with - resulting in 1 teflon shoulder and 1 on the way in 2010. But in the end, there is no end in sight. Some days I have tonnes of energy - others, not so much. And while there is no end in sight, at least some days I have the energy to enjoy the scenery along the way.

Sunday, January 24, 2010

Obsessing over my hands

Lately I have been obsessing over the ulnar deviation (swanning) in my hands. As you can see from the photo above - the index and middle finger sway to the right. To the casual observer, this may not look like much - however, I am not a casual observer of my hands. I see them all day, every day and wonder what they will look like in to 10, 20, 30 years. I've seen seniors who have hands they can barely used because of deformities, and I worry that will happen to me. I know this will not happen today, tomorrow or the next day, but I know it will.

RA can be a tricky disease. One day you're fine and then changes slowly creep in, and next thing you know, it's 5 years later and your list of "what I used to be able to do" is gaining equilibrium with the list of things you can do. Scary. Just sorta sneaks up on you and taps you on the shoulder and says "Boo!"

I've had RA for 18 years - I've had it for more of my life than not, and when I take stock of what damage I've had so far, I know there is more to come. I'm not pessimistic, I'm realistic. I don't want to stick my head in the sand and pretend it isn't happening. I'm trying to prevent further damage, which includes taking an honest inventory of what could happen, and then planning for it. One more item to add to my list for my next rheumatology visit...

Saturday, January 16, 2010

Layers of an Onion

2009 was a world of change on my perspective on life. Really. I feel like I woke up from a coma realizing what is important and I was on a mission - but taking a turtle as opposed to a hare approach to my plan. I must thank RA Guy for inspiring me. In one of his posts he talks about his health care team. And it got me thinking - who is on Team Graham? (crickets) Hence, my mission to create Team Graham, mobilize the troops and move me towards a better place of health.

So far, I've recruited my naturopath, a physiotherapist, a yoga instructor and a therapist. Team Graham is growing by leaps and bounds! Oh, yes, and my trusty rheumatologist and ortho surgeon. I'm looking for a better state of health, and have tried several of the above approaches before - separately - with some success. I'm looking to gain some help from each area in an effort to navigate the Prednisone-reduction and the post-prednisone era that is coming. I know that further flares are around the corner, and I want to be prepared.