I Hate Stairs

I can almost see my parents smile when they reads the title of this post.

"I hate stairs" was one of the phrases that started my RA journey. I was 16 when I was diagnosed and I was in a high school with two floors and no elevator. When I was flaring it would take extra time to get to class, and usually I would wait for all of the kids to be in class before I started to one-step it up the stairs. I didn't want the attention. My teachers knew that I was recently diagnosed and gave me some latitude in getting to class on time.I remembered that my science teacher called my "creaky".

So, I'll stop denying it now - I am flaring. It hurts. I am in between Biologics and it's showing. I am returning to my full-flare tricks and habits. Shuffling after I get up from a chair, loathing stairs, looking for the elevator at work - even though it is at the opposite end of the building. Un-bending my fingers in the morning as they have curled up overnight.

I went for a walk with my four year old daughter in Gatineau Park , and we picked Pink Lake to walk around (she, of course, likes pink). The start of the trail is on a lookout and you walk down some stairs to get to the trail. I walked down fours steps and started to cry. I just couldn't do it. The ups and downs of the trail leading there had been enough and my knees were screaming. And Chelsea said "Momma, what's wrong?" I said that mommy's knees hurt like her shoulders hurt and I didn't think I could walk down the stairs. She said "That's OK. We can go back to the car. I love you."

I feel so bad. She's four and her life will be shaped by a mom that can't do stuff. Already, at four and six, my kids know that daddy can carry them and mommy can't and that mommy's shoulders hurt. And mommy is going to the hospital to have her other shoulder fixed.

And the positive voice in my head says that I have many other attributes and abilities. Kids are resilient. They will grow up to be more empathetic adults. They will see past disabilities.They will be more caring. This is what I hope for.

Probably a bad choice, but I'm wallowing a little and so I am listening to Adele's song "Someone Like You". Powerful song with only Adele and a piano. It's coming to terms with a breakup, about moving on. Bittersweet, like my day today.

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.