Back in the Game

Back in the Game
Music & Lyrics by Karen J Kamenetsky (2010)

Some days, you want, entirely too much from me.
Every way I turn you're standing between where I am and where I want to be.
I try my best to ignore you and pretend that you just aren't there.
I don't want to sink into bouts of self-pity that leave me standing in the corner crying this just isn’t fair.

Starting today, I am gonna stand up to you.
I’m off the bench; I am back in the game.
I'm gonna do everything I set out to do,
And if I don't, well, I won’t let you take the blame.

I used to believe you held all of the cards, nothing was mine to control.
Now I can see the way I've been used and I want back everything that you stole
Every hour that I spent believing, the dreams I had built were all gone,
Every minute I thought you had gotten the best of me, and left me sitting in the corner trying to find the strength to go on.

Starting today, I am gonna stand up to you.
I’m off the bench; I am back in the game.
I'm gonna do everything I set out to do,
And if I don't, well, I won’t let you take the blame.

These days, I know, you can make it hard for me but I can push through
It’s all up to me, I can give up or I can live the way I want to in spite of you.
Not every day will be easy; no one promised me a life without pain,
But this time around, I am calling the shots, and I say, throw everything you’ve got at me, I’m gonna celebrate instead of complain.

Starting today, I am gonna stand up to you.
I’m off the bench; I am back in the game.
I'm gonna do everything I set out to do,
And if I don't, well, I won’t let you take the blame.

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Back Story

This song came out of my thirteen year battle with Rheumatoid Arthritis. The diagnosis was devestating. I was forty three years old and thought RA meant a future of pain, disfigurement, and disability, and the end of all my plans and dreams. My family was affected as well. My husband was angry and afraid at what this diagnosis might mean for our future and what the disase might do to me. My children were confused about why their mom was sitting on the couch all the time.

The diagnosis was hard for all of us to process. I did not look any different, I didn't look sick. I was in a lot of pain, though; I couldn't put the dog on his leash, I couldn't spread peanut butter on bread for the kid's lunches, I had to walk down the stairs sideways, one step at a time, I had bone numbing fatigue, and a constant low grade fever.

It took months to get the pain and fatigue under control with medications. I had to learn to give myself an injection twice a week. I was out of work on disability for several months. Even after I returned to work, I was depressed and afraid. For several years, I pulled back from just about everything in my life, volunteering, excercising, music. I said no to invitations, declined to participate in activities. I shut down, sat on the couch, felt sorry for myself, became depressed, and gained 30 pounds.

At some point, and I can't say exactly when it was, I realized that sitting on the couch wasn't really making anything better and that just how much this disease affects how I live my life is entirely up to me. I got off the couch. I went to Weight Watchers meetings and lost 43 pounds. I began to focus on my music, began writing songs, and I started living my life again.

I still have to have three injections a week. I still have some fatigue and some pain almost all of the time, but I am living my life. I have limitations, I know what they are, so I work inside them. I work 7 hours a day instead of 8, I walk instead of taking Zumba or Spinning classes, I wear braces on my ankle and my wrist when the pain is exceptional, I don't practice my guitar unless I have a gig coming up, and then carefully, so I don't put my hands into a flare before a show. When it hursts to walk, I park in the handicapped parking space and hang up the blue sign. When things get really bad, I go to bed and stay there for a while, but I am living my life.
I am lucky to have a boss and co-workers who are totally supportive of me continuing to work despite my limitations. I am blessed to have a husband who now understands that I have disabilities even though they are not always obviously visible, and who cares for me, and who has joined me in my quest to re-imagine the rest of our life, adjusting the plans we had to accomodate my limitations without giving up on our dreams.

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Back in the Game - Info on Rheumatoid Arthritis 

Rheumatoid Arthritis (RA) is an auto-immune disease.

An auto-immune disease is one in which your own immune system has somehow become confused and begins to attack some part of your own body. In RA, the out-of-whack immune system attacks mainly the joints, causing pain and inflammation that can lead to total destruciton of the joint. RA can also cause inflammation of other parts of the body, like the lungs, the lining around the heart, and the blood vessels. 

RA is a systemic disease, in other words, it affects the entire body, not just the joints themselves (unlike osteoarthritis which affects only the joints). In addition to joint pain, untreated RA causes serious, life affecting fatigue, and can also cause a low grade fever. 

The attack on the joints by the immune system causes a serious inflammatory response from the body. The unrelenting inflammation can cause irreversible joint destruction.  You can find out more on the Arthritis Foundation's website by clicking here.

There is no cure for RA, although a lucky few do go into remission with appropriate treatment. In past decades, there weren't any good treatments and a diagnosis of RA inevitably meant serious joint damage, disfigurement, and disability. Today, immediate, aggressive treatment can not only treat the symptoms of RA, but slow or halt the progression of joint damage.

I was lucky to be diagnosed in 2000, because the first of a new class of drugs, called Disease Modifying Anti-Rheumatic Agents (DMARDs), became available in 1998. That drug was Enbrel (enterecept). It is one of a class of drugs called TNF blockers because it targets a part of the immune system call tumor necrosis factor. The TNF blockers interfere with RA's attack on the immune system and prevent joint damage. I have been taking Enbrel since 2001.

I have moderate to severe rheumatoid arthritis and my disease was not able to be managed with a TNF blocker alone, so my treatment regimen also includes methotrexate (MTX). MTX is one of a class of drugs called antimetabolites. It is used to treat some cancers and also used to treat RA and other auto-immune diseases. Methotrexate interferes with DNA synthesis, repair, and cellular replication. Places in the body with rapidly reproducing cells, like nerve cells, bone marrow, cells that line the mouth and the stomach, cells that make up our hair and nails, and cells in the bladder, are more sensitive to this effect of Methotrexate - so are malignant cells (tumors), which is why it is effective in treating some cancers. When you take MTX, you also have to take a folic acid supplement to protect against adverse effects on those rapidly growing cells. The MTX helps prevent hair loss and mouth sores, and some of the nausea caused by the drug.

After a particularly bad flare several years ago, my doctor prescribed another DMARD, called Remicade . Remicade is administered by infusion. I had about a half a dozen doses and some good results before I had a bad reaction and couldn't continue treatment with that drug.

In addition to Enbrel, Methotrexate and folic acid, I take prednisone when my RA flares up, vitamin D (which has been shown to be involved somehow in the disease proces of RA), and etodolac (a non-steroidal inflammatory drug) to treat pain.

As a hospital pharmacist, I understand the benefits and risks of my medications and I should know enough to be consistenly compliant with my treatment regimen, unfortunately, I don't always follow my own advice .

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