Invictus...RA and all!!!

With this latest flare up since my baby has been born, I have felt like I have no control and I am simply at the mercy of this disease. I was watching a movie that helped me change my perspective and get some fight back in me. Nelson Mandela, played by Morgan Freeman, refers to the following poem. I immediately looked it up following the movie. It is by William Ernest Henley who at age 12 fell victim to tuberculosis of the bone. His foot was amputated at age 25 and he wrote this from his hospital bed.

Out of the night that covers me,
Black as the pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds and shall find me unafraid

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.

The last two lines have become my daily motto: "I am the master of my fate: I am the captain of my soul." In my next posts I plan to address my deepest fears of this disease: mortality rates, passing RA on to my children, liver failure, cardiovascular disease, disability, etc. I want to get the facts straight and figure out what I CAN do about them instead of letting fear run my life. I have RA and I will have RA for the rest of my life. I am only 31 years old! I have a lot of life left to live and I will not let RA win. "Invictus" is latin for "unconquered" and that is exactly what I plan on being!

Rheumatoid Arthritis: Involving Your Children

When I was first diagnosed with RA I very clearly remember talking to a friend whose mom had a type of debilitating arthritis and thus had to rely on a cane to get around. She told me how embarrassed she was to have her mom come to school functions or friends come over to her house. That conversation has stayed with me for years and has affected me in negative ways. I believe the time has come to address this conversation from my past. My RA doesn't have to be an embarrassment to my children. I am beginning to see this time around that just the opposite may be occurring...
I had two young children when my diagnosis came in 2003 and I had every intention of hiding my RA from them. The words "rheumatoid, arthritis, disease, sickness" were never mentioned in front of them and I was going to keep it that way. I put a smile on my face and cried at night when they went to sleep. I took my meds in my bathroom where they wouldn't see them. I was determined to do what I saw all of the other mothers doing with their children. However, I do remember on my bad days getting more hugs from my kids and even my 4-year-old mentioning me in her prayers at night...they knew despite all my efforts to hide it! Children sense when those they love and depend on are hurting and it is OK for them to be a part of your bad days. If not addressed it leaves them to worry about the unknown.
This time around I again have two little ones running around but also two older ones now ages 9 and 7. There is no way of avoiding their questions and concerns as they see their mother struggling up stairs or crying over the juice bottle she can't open in the morning. Just yesterday my 7-year-old noticed me taking a longer route in from our backyard to avoid our stairs and asked "Mom, what is that thing you have?" Yes, I didn't even hesitate in saying the words "rheumatoid arthritis." She accepted my answer and moved on with no further concerns. A few days later she asked, "Mom you know that thing you have, are you going to die from it?" I was so glad that our communication had been open enough that she dared ask me that question instead of letting it worry her privately. My 9-year-old prides herself in being able to open jars and bottles for me and helps so much with the younger siblings. Instead of letting anger and frustration take over in those moments as I watch her doing the things I once took for granted, I have been humbled into just being thankful for the help. I have the most amazing children. People often ask what I have done to raise such helpful, caring, and perceptive children. I have also pondered on this question myself and I have to believe that my RA has become a part of them too. They have learned to recognize when others are in need and have found ways to help and serve others as a result. This whole time I have been worried about RA ruining my children's childhood and about them being embarrassed of their mother when really they are becoming strong, loving, responsible human beings as a result of my RA. Let your children be a part of your battle. They have the right to know and the right to grow right along side of you.

Inspirational Example

This video has many similarities to our "new lives" with RA. It gives me courage and hope on those not so easy days. It also encouraged me to start this blog. There is healing in sharing our trials.

http://www.youtube.com/mormonmessages#p/u/4/KHDvxPjsm8E