Christmas Story

Last Christmas was like no other. We watched Saturday Night Live on the weekend before the holiday, and in the morning when we woke up we had no power. Just looking at all of the downed branches outside our windows told us all we needed to know about our prospects of renewed light and heat.

We had a huge ice storm that coated everything in a thick layer of ice overnight. I put on long johns, ski socks and my warmest cosy wool pants as a base layer, followed by 2 pairs of sweats. Of course the top pair had to have pockets for flashlights. It took six layers on my top half just to cope with the inside temperature. 

Backyard Tree 

We stayed home for the duration with lots of clothes, double duvets and candles. Luckily we had hot water and our neighbour has a gas stove for coffee. The bus that normally comes past our house had to reroute because there was a fallen tree branch and hydro wires down across the road for days.

It's been a long time since daylight made such a difference, as in "Hurry, We need to get home before dark, I forgot my flashlight."

Ice is beautiful but deadly

It was Christmas Eve, 2 1/2 days later, before we had light and heat, so we headed out for our planned Christmas dinner with relatives. We started on our trip around 11:30 am, already behind schedule. By the time we picked up our cousin, and his surprisingly large extra piles of things to take along, including a thawing turkey and his walker it was starting to snow again. 

Finally we got ourselves onto the highway and almost immediately the tire pressure light went on and we had to turn back. At a gas bar we called roadside assist - it was a huge relief that they sounded so capable and promised to send a service man within an hour. 

When he arrived and checked the tire he felt that we just had a sensor problem and could continue. Such a relief! So THEN, an hour after the stop, our cousin decided to get a coffee.

As he disappeared into the store we stood watching the serviceman finish up, a young couple joined us to see what was going on. They were delighted to hear that we had a tire problem and had found help. They really did have a flat tire and were grateful to find a possible Christmas angel. The fact that one was still in PJ's might help explain their  joy.
 

Emergency guy at the gas bar

We were all ready to go at last BUT where was Cousin B?
I went after him to speed things up and grabbed his coffee to help him speed over to the car. Only then did he decide to meander into the washroom! What he was thinking all the time we waited I'll never know. So we were all waiting for him and when he came out of the washroom he inexplicably ambled around the store searching of that essential lock de-icer he had just imagined he might need for his own car back home.  Needless to say we were late for dinner.

So many things went right overall:

It was so helpful of the attendant at the Shell Gas Bar offered to turn on the air pump to help us.

We felt amazingly lucky to have Roadside Assist come out to help us on the holiday.

Christmas at last. 

We were so happy to have light and heat, not to mention a cooked turkey at the end of Christmas Day. It tasted even better than usual after freezing in the dark for days.

Having to go to bed when it gets dark really brings home the value of heat and light. It's so easy to take for granted.

Living With Joint Damage

There was a paper published in December about the juggling act that it takes for patients to manage rheumatoid arthritis when they are doing well or having a flare.  I can attest to the amount of work that it takes just to maintain your equilibrium, let alone make progress.

And it takes very little to make some of the balls fall out of the air - a cold, going for a holiday, a storm, non-delivery of your medications. Here our power was out because of the ice storm and I still have not bounced back from 2 days of freezing in the dark.

Maintaining a program that works is so important that I can even agree with Dr. Sanjay Gupta about establishing a routine and sticking to it with RA, even though (if you watch the video) after a shower, washing my hair, walking to work and exercising for 30 minutes I'd be done for the day since my whole stare of energy would be depleted.

Video from amazon.com

For me any change of regular practice is something I have to pay for eventually. As an example, before I went on vacation I had a systemic cortisone injection. That meant I had more energy and was more active during our holidays. We had a great time meeting Twitter friends, visiting family and seeing the sights but right after the flight home I developed sciatica symptoms. That made me start limping and the gait change aggravated the joints of my foot.  The result remains unpleasant.

I'll certainly think twice about cortisone in the future. It's a high price to pay for a nice vacation. 

To end the year I posted my five most popular posts ever. It's ironic that the post about Progression of Damage and Why It Matters shows up as the third most popular post. The fears of progression are an important reason for aggressive treatment and I found out just before Christmas that the joints of my jaw have severe damage. I have been complaining of jaw pain for years but my doctor and dentists disregarded those complaints until now, when they have reached the point where the CT scan made them marvel at my ability to function with so much damage.

So that's a good reason to trust your own knowledge of your body. Even though I feel that I am an experienced patient and that I am effective, their dismissal of the possible problem influenced me. I found a Patient Advocacy Group for TMJ.  Now I know that if you have TMJ (Temporomandibular) problems it is unwise to have extensive dental work such as crowns that may aggravate your TMJ.

This leaves me wondering what else may occur in the future. It's as if my body is a facade. The hated phrase "But you don't look sick" might start to be even more meaningful.

Of course it could be worse. My friend Patty is still hurting from seeing that the doctor had written on her chart "looks chronically ill" and that he has stopped asking how she is doing. It reminds me of the song by The Who. "Substitute" What you see is not all of it.

There are many active RA patients who go back to regular activities. Doing that is a great demonstration of effective new treatments and good outcomes. However if you hold off starting treatment or you have a misdiagnosis. the joint damage that occurs may make it very hard for you to run future marathons.