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.

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.

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...

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.

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.