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Better living with RA: Part One

 

Rheumatoid arthritis (RA) is considered a chronic disease. A characteristic of chronic disease is its disabling features. Walking may become more difficult. Activities like dressing, preparing meals, performing personal hygiene and completing household chores become harder and harder. Life becomes increasingly challenging until a person hits a crossroad where they make changes in his or her life or gradually slips down the slippery slope into a dependence that requires custodial care and no turning back.  RA is known for making life challenging in many ways. Like cancer, diabetes or all the other autoimmune diseases, being able to live with RA starts by making changes to our lifestyle.

Pain management is a big concern for those with RA. There is no going around the fact that pain is a common feature of every day RA life. There has been much written on managing pain. Managing pain is possible with the help of professionals skilled in pain management. The topic requires its own space although these suggestions will help lease the burden of that pain.

For now, let’s look at some simple changes. Foot pain is a big issue for me and for many with RA. Before I changed how I dressed my feet, I could barely walk. I saw a podiatrist who recommended shoe changes and customized inserts. I started out with a selection from a New Balance store and then progressed to wearing special shoes with custom inserts. My feet still have problems, numbness and night pain, but on a day to day level my feet are comfortable, and my mobility is normal. It was a simple change but had a dramatic effect on me.

I am on chemo for a current cancer. Fatigue is a big problem for me as it is for an RA flare. Keeping clothing uncomplicated can save a lot. Nightgowns take less energy than does putting on PJs (yes, it is that bad). Summer dresses such as wraps are easier for work, fewer pieces. Pull ons and pull overs make summer living easy.  Yes, we need a certain number of zippers and buttons but adding slip ons makes life easier. Even with button up shirts unbuttoning the top buttons and slipping over the head gives fewer buttons to close.

Shoulder pain is its own problem. Loose clothing is easier to manage as are knits instead of fitted jackets. It is important to us individually that we look our best.

Consider it a personal challenge to select clothing that is easy to wear as well as fashionable. It will boost your spirit as well as making the morning routine less stressful. These are just a few suggestions to get your mind on a tract that will make life easier as well a keep your fashion sense satisfied.

Look Good Feel Better

There is one good thing about chemotherapy. It is the Look Good Feel Better program. Fun. A time to share. Like Christmas. It is a two-hour appointment with a cosmetologist in a small group of women who have cancer.

I had participated in a program five years ago when I was in radiation treatment for breast cancer. That appointment was at MD Anderson on Indian School near Kaseman. This session was at the Rust Cancer Center and was equally as good as the one five years ago. We are each given a cosmetic bag full of cosmetics that matches our skin tones. The bags come sealed and ready for us. At our places we each have a mirror and cosmetic wipes.

Opening the bag is like Christmas. My bag had Chanel powder, lipstick and blush. Clinique foundation, Estee Lauder face cream and eye makeup, IT brow powder and a set of brushes, body lotion and sun screen. Pure joy.

Our instructor walks us through the steps of taking care of our face during cancer treatment. She used me to demonstrate for our group. I was not well. My energy level was non-existent. Yet, I looked forward to this and enjoyed every minute.

I came home with a cosmetic bag full of expensive goodies and a big smile on my face. I’m still bald. I’m still weak. But I had a good moment. A happy moment that will repeat itself every time I use any of the cosmetics in my cosmetic bag full of goodies.

The Look Good Feel Better program started 30 years ago. A doctor asked the president of the Personal Care Products Council how he would arrange to have a makeover for a cancer patient who refused to come out of her room because she felt she look horrible. Cosmetics and a cosmetologist transformed her look and her outlook.

With such profound results, the idea was presented to the Personal Care Products Council membership, the nation’s cosmetic industry leaders, who immediately offered funding and cosmetics. The American Cancer Society joined the effort as did the Professional Beauty Association. Today Look Good Feel Better is offered in every state in the union including the District of Columbia and Puerto Rico.

The program is offered once a month at the Rust Cancer Center and it is offered at most cancer centers in Albuquerque. It is well worth the time and energy to go.

 

 

 

How my hair came to fall out, more experiences with cancer treatment

 

I remember when I learned about my latest cancer (#3).I knew that once again my life would be consumed by all things cancer. After major comprehensive surgery (they took almost everything out), it was time to settle into chemotherapy. My oncologist, Sara Jordan, had explained the reasoning behind the treatment she proposed. Chemotherapy would be part two after surgery and before vaginal radiation. I figured she might be able to cure me which sounded appealing and worth the effort I would be expending. This picture shows my hair, but it was taken after surgery and before chemo.

The chemo was to be a commonly used combination of Taxol and Carboplatin. Six sessions in 21-day cycles. Hair loss is definite and is estimated to be 2-3 weeks after initial infusion. This allows a little planning time. My hair stylist, Audrey, cut my hair into a short pixie. Much better than a butch or a clean shave. The second part of the plan was to shave it when it started falling out.

About day 19 after the initial infusion, my scalp began to hurt. It hurt on a level of 7-8 on the pain scale. Sharp pain. I found that when I gave some a gentle yank, if fell out and the pain disappeared. Over two days I went from a person in pain with an obsession to a bald woman with a happy head. I was amazed that I was so glad to be rid of it. Besides I have a well-formed head. Looks good bald.Cream. No Make-up. Just me. Aloe Vera with sunscreen to my head.

 

This was my experience. Being unique people, we will all have different experiences and we will make different choices.

I enjoy this cap.  cotton, comfy, summery.

 

The thought of being bald was a tough one, but now my head has about 12 different head coverings including a fun new wig and it really isn’t so bad after all.

 

A few resources you might enjoy.

Hair Loss                     the American Cancer Society              https://www.cancer.org

 

Why and How Hair Loss Happens    Breast Cancer            https://www.breastcancer.org

 

12 Ways to handle hair loss from chemotherapy   WebMD                https://www.webmd.com

 

Chemotherapy and hair loss: what to expect during treatment   https://www.msayoclinic.org