Last Friday and the Rest of Her Life

Last Friday was World Arthritis Day and honestly, I wasn’t sure what to say about it. Arthritis is a condition that affects more than 46 million U.S. adults—a number that's expected to increase to 67 million adults by the year 2030. But I’ve not had a personal experience with it until I became friends with a lady at my church who has arthritis. She asked people to wear blue on World Arthritis Day and then I asked her if she'd like to be interviewed!

There are more than 100 types of arthritis but rheumatoid arthritis (RA) is the most common type of inflammatory arthritis. More than 1.3 million Americans are affected by RA. According to the American College of Rheumatology, about 75 percent of those affected are women. In fact, between one and three percent of women are likely to develop rheumatoid arthritis in their lifetime. So, it’s appropriate that my friend is a woman. Her name is Melissa Maxey and here is her story.

1.       How long have you had arthritis?

I was diagnosed at age 35 (I am now 42), but the specialists believe that I have had it for the majority of life based on my medical history.

2.      How did your life change when you were diagnosed?

I was unable to work because of the extreme pain and spasms. My husband had to become the primary caregiver of both our son and me. I was wheelchair-bound for a year.

3.      What kind do you have and how does it affect you?

Ankylosing spondylitis (AS), (a form of rheumatoid arthritis) which means that my spine is gradually fusing together. With all aging people, I also have osteoarthritis which is in the joints. I am unable to cook, clean, and bathe without assistance. Depression is common, so I am on medication for it and see a psychiatrist quarterly. AS is in the RA "family" of autoimmune diseases, which is different than osteoarthritis and common in all adults.

4.      What are the best ways for others to help people with arthritis?

The biggest way to help someone with RA is to offer assistance: Do they need a ride anywhere? Would they like to go clothes or grocery shopping? Early mornings and evenings are the most difficult time for RA sufferers because of exhaustion and swelling. Going out to lunch or the movies, visiting them at home, and sending friendly texts or emails about nothing in particular are the best ways to make sure that they don't feel isolated. I have many online friends, but not very many locally. I need to get out and meet people, but most activities are in the evening because of work schedules for those my age. The greatest gift I receive is at church where people give me gentle hugs and beautiful smiles! I also have a friend who cleans my house monthly and I give her what I consider a nominal amount. This is HUGE because my husband and son are messy!

5.      What are symptoms of RA?

The Mayo Clinic sites varying degrees of these symptoms of RA: tender, warm, and swollen joints; morning stiffness that may last hours; firm bumps of tissue under the skin of your arms; fatigue, fever, and weight loss.

6.      What do you do to deal with it? Diet, exercise, medication, surgery?

Rest and medication are my current regiment. When I have the energy, which unfortunately is not often, I exercise; the best exercise to alleviate joint pain is water therapy (I joined the local YMCA for access to a swimming pool). Weight gain is one of the worst things for arthritis as it puts more pressure on joints. There are theories that avoiding gluten in the diet helps with pain management, but this did not help me. With RA and AS, surgery is a temporary treatment because these are autoimmune diseases which worsen with the years. There is no cure. 

7.      Why is early diagnosis and treatment important?

Understanding the reason for my pain helped me learn to live by my limitations and ask for help (that's the hardest part!). For years, I was told that my pain was psychosomatic because all clinically-based testing was negative. When my AS developed enough, then the MRI and CAT scans showed moderate-to-severe fusing in my cervical-spine (neck) and mild to moderate in other portions of my spine. Just knowing that I'm not "crazy" helped my attitude immensely.

8.     What sources would you recommend to someone who has just been diagnosed with arthritis?

I scoured the internet and harangued my doctors in my quest for answers. I had never even heard of AS, so how could I have it? I belong to several online support groups for RA, AS, RSD (Reflex Sympathetic Dystrophy), and fibromyalgia, all of which I have. As a postscript, once you have one autoimmune disease, very often you will develop others. My best sources for information come from arthritis.org, mayoclinic.com, and other chronic pain sufferers. Speaking with others who have RA gives me hope that I can live fully, how to work around obstacles (my husband put up grab bars throughout the house), and information about alternative treatments.

9.      You have a great attitude about life. What life lessons have you learned from having this disease?

Thank you! The best lesson I am learning is that the greatest gift is my family. I was so career driven that I set aside my little boy and husband in order to climb the corporate ladder. My strong faith gets me through day by day, hour by hour, and moment by moment. God is within all of us and wants us to learn from all situations, making them better, and living the life which others would like to have. To me, this is the greatest way to witness.

10.  Is there anything that you would like to add?

Pain does not have to be a life sentence! All autoimmune diseases can go through temporary "remission," so enjoy the good days and rest on the bad.

Comments

  1. I found this very informative! Thanks for shedding some light on this often confusing disease.

    ReplyDelete

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