Falling Slowly

Today was Remicade infusion treatment #3. Last night I drove down to Houston and stayed at my parent's house in preparation for the treatment. I made the decision to not switch doctors after I moved to Galveston. I have built a relationship with my doctors in Houston and feel comfortable there. I have the best team of doctors and I am grateful for them. I woke up feeling uneasy and in pain as usual. The past few weeks for me have been difficult to say the least. The severity of my pain is increasing steadily by the day. My rheumatologists, Dr. Johnson put me on Prednisone a corticol steroid as a quick fix for pain. I hate steroids. In my opinion they do more harm than good. They make me feel tired, moody, and weak. Although the Prednisone does help alleviate pain, I'd rather the pain then dealing with the side effects. I have been taking the Prednisone for the past 5 days and have been feeling awful. Dr. Johnson also gave me a new prescription for a pain killer Darvocet. I am now relying on the Darvocet most nights for pain relief and a medically induced sleep. That is the only kind of sleep I have been getting lately.

The infusion today was the most difficult one thus far. My body has been non-responsive to the past treatments. Dr. Johnson suspected this might happen because prior to my remission, I have previously been on the drug. So today I got an increased dose. Getting the IV in place today was a bit of a challenge. My veins are small and weak due to the RA and the drugs. 2 IV sticks, a heating pad, 2 nurses and about 30 minutes later I was finally able to start the infusion. I again welcomed the Benadryl induced sleep, covered up with a blanket, and closed my eyes to rest. I immediately started to feel the effects of the increase dose almost as if my energy and strength was leaking out like a deflating ballon. After the infusion Dr. Johnson and I talked about the possibility that the Remicade may not work and we will have to try a different treatment. I am suppose to call into the office on Monday and let him know how I am feeling. If there is not significant improvement in my pain level, then it will be time to explore other options. He also prescribed a NSAID non steroidal anti-inflammatory drug called Etodolac to help with the everyday flares and inflammation. And I got the ok to stop taking the Prednisone !!

Today's song is Falling Slowly by Glen Hansard & Marketa Irglova from one of my favorite movies ONCE. Today as I am typing I can barely hold my head up. I am weak and in pain. It's moments like this that I realize the reality of my situation and wonder where I will find the courage and strength to continue. I chose Falling Slowly because the lyrics speak of hope. It speaks of the daily choice I must make to get out of bed and keep going. Because for me failure is not an option. Giving up is not an option. So I raise my hopeful voice because I have made the choice and I will make it through each day.

"I don't know you, but I want you all the more for that.

Words fall through me and always fool me and I can't react.

Games that never amount to more than they're meant will play themselves out.

Take this sinking boat and point it home

We've still got time.

Raise your hopeful voice

You have a choice

You'll make it now.

Falling slowly, eyes that know me and I can't go back.

Moods that take me and erase me and I paint it black.

You have suffered enough and warred with yourself

It's time that you won.

Take this sinking boat and point it home.

We've still got time.

Raise your hopeful voice

You have a choice.

You've made it now.

Falling slowly sing your melody

And I'll sing along."