According to my WordPress blogger’s guide, a catchy blog title can work wonders. I tried my best. I also notice that when I report a new post on Facebook that the first few words of the post are shown, so I shall try to make all future initial post sentences extra interesting to draw in readers!
I am happy to report that after a trip to the emergency room (what fun that was!) and two cortisone shots to the back of the neck, TiffeeG is semifunctional again. The past few months have been extremely difficult, as she has gone through two 12-week trials of Enbrel and Humira (big fat fails). These biologic drugs work as TNF-inhibitors (let’s just leave it at that for the medspeak) and are prescribed for patients with various types of arthritis and AS. They might work for some, but not TiffeeG.
She self-injected faithfully, endured the side effects of the shots themselves, and gave them the time needed to work–but they didn’t, and in the meantime she suffered a horrible flare in her neck that persisted for weeks–to the point where she couldn’t turn her neck and in desperation finally went to the ER.
Those of us who are fortunate enough not to deal with chronic pain surely can’t imagine what it’s like and how it wears on you day after day. I have seen my sister dismiss her pain, try everything possible to deal with it and just keep going, and then ultimately start to crumble under the strain, day by day. To wake up and feel instant pain is terrible, and I have seen the physical and mental toll that it takes on a person.
What makes AS even worse in my view is that inactivity only increases the pain and stiffness. This isn’t a disease or a pain that you can “rest” away or hide from; in fact, being in bed is often the most painful time of all for my sister. People with this disease (and many people with other more typical forms of arthritis) can’t get away from the pain. Lying in bed is painful and increases the stiffness, yet they hurt so bad it’s hard to stay active. Well-meaning people often suggest that sufferers “stop doing so much” and to try to spend more time in bed. This doesn’t work, although in the worst moments Tiff will retreat to bed with the heated mattress pad fired up and a heating pad on her back or neck. Others tell her to stay active (usually said in a cheery voice). I’m sure my sister and other AS sufferers have wanted to strangle doctors and other people for telling them to keep moving and maybe try yoga. This may be true, but when you hurt so bad, it’s hard to imagine doing the ol’ downward dog!
Over a year ago, my sister tried to start a gentle Pilates program. Within three weeks she gave herself a nice case of bursitis that persists to this day. They just can’t do enough to get the inflammation under control. That ended that experiment! Still, she does keep moving–it’s just very slow on her worst days. On her good days, she tries to take advantage of the moment and get as much done as she can. On her bad days, she paces herself and saves her energy for her kids (ages 12 and 10) and their after-school activities.
So at this point I’d like to give a shout out to Vicodin and the nighttime prescribed cocktail of Ambien and the muscle relaxer Soma, because they are how she is able to sleep at night and function on her worst days. Until the doctors are able to bring her inflammation under control (she is set to try Remicade next, which is an IV-infused drug), these meds help her pain to some degree, and I am thankful.
She is so careful about the Vicodin and really resists taking it until absolutely necessary. I admire her for being cautious. If it were me, I’d take two of those puppies with a wine kicker by noon every day! She’s just a better person than I am.
She’s also upset about the way her illness affects her husband and family. She took herself to the emergency room a few Saturdays ago and insisted that her husband stay with the kids and take them to their son’s basketball game so that things would be less disruptive to them. She was there by herself for hours before she let her husband call me to give her a ride home. When I got there, she was alone in her room in intense pain and then was upset that she’d disrupted my Saturday. Please! If I were in intense pain, I’d be ringing up everyone I knew, wailing “Come be with me” until somebody showed up and held my hand! I don’t like to suffer so much as a hangnail without clamoring for sympathy. Just ask my husband. Or my kids. Or my dog. Hell, ask anyone.
So, three cheers for Vicodin…as John Lennon sang, whatever gets you through the night!
In other news, the official training program for the marathon began yesterday. Day one: a three-mile run at a “comfortably easy” pace. Personally, I find three miles to be a more difficult run than a 5+ miler. I don’t get settled in until three miles! Just when my breathing and pace stabilize, it’s time to stop! Do other runners feel this way? Also, the trouble I seem to be having so far with my runs is that I have to force myself to slow down. I have to run another 5 miles today (at my intended race pace, which is around a 9:40 mile) and then 3 more easy miles tomorrow, so I tried to run it slower than easy, even though I kept speeding up as I went and “comfortably easy” felt faster and faster. It was hard to slow myself down when it felt so comfortable, but I tried to remind myself of the 8 miles I had to run in the next two days and the 8 miles I have to run on Friday. This isn’t a sprinter’s race. Pace yourself, girl!
So I ended up running the 3 miles at an average 9:49 pace. I hope that’s okay. I figure that as my miles build, it will soon become pretty easy to slow down.
Official training miles logged: 3.
Me and TiffeeG in Paris…