What do you consider the most difficult aspects of living with arthritis?
This has been one of the most difficult questions for me. Having had arthritis since age 5, I do not know life without it. There have been stages of difficulty for me. As a child I didn’t understand the pain, the medications, therapy and why my body was crippling. As a teenager I was mortified. Society places such importance on physical beauty and I truly felt I did not meet the standards of beauty. Luckily as I grew and matured I realized beauty does indeed come from within and began to disregard the media’s idea of beauty.
For me the most difficult things, other than the pain and limited mobility, have been the little things. Those things that so many take for granted like being able to get up in the morning and get moving without any problems. Being able to dress yourself without difficulty. Tying your shoes and hoping they stay tied while you are out in public. Opening a soft drink when no one is nearby. Reaching that item on the highest shelf in the store and carrying groceries into the house. On a daily basis I am confronted by these little frustrations created by arthritis. On a daily basis I accept these little frustrations and find a way to do whatever obstacle it is I am up against. I have learned I am not disabled but that I am differently-abled. What can’t be done one way I find another way. Arthritis has made me very adaptable and given me a huge appreciation for adaptive equipment.
Describe your involvement on the local level with the Arthritis Foundation.
I am very involved with my local chapter. I serve on the program committee and began a young adult and children’s support group. As group leader I write a quarterly newsletter and I started a "Pen Pal" program in my state. I was partially responsible for Kentucky’s, first ever, Family Fun day to raise awareness and funds for juvenile arthritis.
As part of the program committee, I work with the Camp Diversity Program. This program is available to the Girl Scouts and gives the troops an opportunity to learn about arthritis. The girl scouts circulate through various stations and learn about their bodies, joints, and what arthritis is. The "nutrition and exercise station" discusses the importance of good nutrition and explains that osteoporosis is a preventable form of arthritis by banking calcium at an early age. "Similarities and differences" is the station that helps the girls understand that there is much diversity in our universe and that despite these differences we are all alike in many ways. In the "experiencing limitations" station we perform various hands-on activities to let the scouts learn firsthand what immobility from arthritis would feel like. The girl’s hands are taped to restrict movement and we ask them to perform several tasks such as writing their name, tying their shoes and open soda bottles. We splint a leg to simulate a stiff knee and ask them to pick up an item from the floor. Several exercises are performed to simulate life with arthritis.
As an Arthritis Foundation volunteer I also volunteer at local health fairs and public forums promoting awareness for arthritis in its over 100 forms.
Have you also been involved on the national level as an advocate for arthritis?
I have been involved on the national and local levels as an advocate. I had the privilege to attend the Arthritis Foundations Advocacy Conference in March 2000. I had the opportunity to visit Capital Hill and speak with my local Congressmen to express my concerns regarding areas of interest to me. The particular areas of interest include increased funding for research so that someday this disease will be a thing of the past. Better access to the very needed medications is also a very important issue for those living with arthritis. There have been several new medications released on the market but for reasons pertaining to finances and insurance many people are going without and this must be stopped. Further funding must be allocated to continue the search for a cure for this devastating disease. Most exciting for me was spreading the word and raising awareness to my congressmen, that Kids Get Arthritis Too! I have also had the opportunity to attend several AJAO (American Juvenile Arthritis Organization) Conferences and have spoken at two of them on issues pertaining to pregnancy and parenting with arthritis.
