The Ministry of Lisa Copen

Lisa Copen, Founder of Rest Ministries which serves the chronically ill, shares about mothering, illness, ministry and more.

Archive for Rheumatoid arthritis

30 Things About My Invisible Illness You May Not Know

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Prize Give Away! Fill out #iiwk09 meme “30 Things About My Invisible Illness You May Not Know.” Copy it from our web site here: – Share it with others via Facebook “notes”, your blog, etc. THEN… post a COMMENT on our blog w/ the link to where you posted it and we are going to choose 2 people to receive a prize Sept 5th, 2009.


  1. The illness I live with is: rheumatoid arthritis
  2. I was diagnosed with it in the year: 1993
  3. But I had symptoms since: a few months before diagnosis
  4. The biggest adjustment I’ve had to make is: everything-life was never the same and I am always in pain
  5. Most people assume: RA is an inconvenience, that is doesn’t impact every part of your life and every movement you make
  6. The hardest part about mornings are: getting up, I am very stiff and sore
  7. My favorite medical TV show is: It was “ER” for years. Stopped watching a few years ago
  8. A gadget I couldn’t live without is: a jar opener
  9. The hardest part about nights are: actually sleeping, and getting all the pillows in the right places
  10. Each day I take about 20 pills (including vitamins)
  11. Regarding alternative treatments I: am open to ideas, but prefer to do my own research not get advice
  12. If I had to choose between an invisible illness or visible I would choose: invisible
  13. Regarding working and career: I was discouraged I couldn’t fulfill the plans I had, but I’ve found God had something better
  14. People would be surprised to know: how deformed my hands and feet are. That the arthritis is in every part of my body, not just “a place.”
  15. The hardest thing to accept about my new reality has been: Seeing the progression of the breakdown of my body, despite the medications and knowing the older I get, the harder surgeries will be to recover from.
  16. Something I never thought I could do with my illness that I did was: go on roller-coasters! We recently went to Disneyland and I just “did it.” And climbing up slides at the park when my son was a toddler and needed help going down.
  17. The commercials about my illness: are nothing like reality. They are very deceiving about most illnesses I think.
  18. Something I really miss doing since I was diagnosed is: being carefree, being able to walk on sand down to the beach and just walk forever along the coast.
  19. It was really hard to have to give up: being creative with my hands like cross-stitching, quilting, etc.
  20. A new hobby I have taken up since my diagnosis is: creative things on the computer like digital scrapbooking
  21. If I could have one day of feeling normal again I would: Run. Play with my son, throwing a Frisbee, playing volleyball, running on the beach.
  22. My illness has taught me: that life is precious and not to take moments for granted or to take the health of your family for granted. We never know how much time we have with those we love.
  23. Want to know a secret? One thing people say that gets under my skin is: I’m so glad you are feeling all better now!”
  24. But I love it when people: actually follow through when they volunteer to help me with something. It’s so hard to ask for help, and then when the person changes plans at the last minute because it’s just inconvenient for them, it can be difficult for a person with illness to find a back up (I’m thinking of generalities here, not a specific situation.)
  25. My favorite motto, scripture, quote that gets me through tough times is: “My comfort in my suffering is this: [God’s] promise preserves my life.” Psalm 119:50 I put it in my emails and when I autograph books.
  26. When someone is diagnosed I’d like to tell them: You are not alone in this. It will be hard, but the most important thing is to turn to God, not away from Him. And to find a friend who understands and will listen to you when you need to talk.
  27. Something that has surprised me about living with an illness is: The amazing people you meet who have so much joy and strength in the most difficult of circumstances.
  28. The nicest thing someone did for me when I wasn’t feeling well was: Just drop by for 5 minutes with a latte or dinner.
  29. I’m involved with Invisible Illness Week because: I want people to know they are not alone in their illness journey and that there is hope and joy despite the pain.
  30. The fact that you read this list makes me feel: thankful that you cared enough to be informed about illness, because with 1 in 2 people living with an illness, there are many others you know who can use your encouragement and support. Thank you!

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at

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Is Fibromyalgia a Spectrum of Conditions?

flower3As someone who lives with fibromyalgia, it is my secondary illness. This means I was diagnosed with rheumatoid arthritis a few years before fibromyalgia and for me, if my RA is under “control”, the FM isn’t as bad. If my RA is flaring like mad, my whole body aches and a good portion of it is the fibromyaglia.

Last winter when I had a bad cough for a few weeks it was the fibromyalgia that was the worst part. In the midst of a deep RA flare, the cough tighened my chest and abdominal muscles and the fibromyalgia made each breath excruciating.

The Fibromyalgia Spectrum – Part of the Big Picture in Understanding Fibromyalgia is an excellent article over at that I recommend reading if you have fibromyalgia or know someone who does. The author is Dr. Pellegrino and it is an excerpt from his  popular book, Fibromyalgia: Up Close and Personal. (Note: I’ve not read the book and so this isn’t a recommendation, just information.)

Dr. Pellegrino has seen more than 20,000 FM patients in his practice at the Ohio Rehab Center, but perhaps his greatest credential is that he has been a fibromyalgia patient himself since childhood.

He explains that there are “Eight Subsets of the Fibromyalgia Spectrum” and what they are. One is actually “Subset 8: Secondary Fibromyalgia Reactive to Disease” which is what one alternative medicine doctor told me once and I’ve never heard said by another doctor since.

He explains, “Individuals in this category have secondary Fibromyalgia. They have a primary disease (for example lupus, rheumatoid arthritis) – and Fibromyalgia developed as a result of this disease. People in this subset probably wouldn’t have Fibromyalgia if they never had the primary disease. The primary disease requires treatment, and Fibromyalgia may improve with this treatment. However, the Fibromyalgia often requires its own treatment, and can continue to be a major problem even when the primary disease is treated or is in remission.”

Wow! Validation. What a concept!

He writes in the article/book:

Today I’m convinced Fibromyalgia is indeed a “broader” condition with various subsets. I believe this information is helpful in explaining why everyone’s symptoms are different even though they all have Fibromyalgia. This chapter addresses how the Fibromyalgia spectrum is part of the big picture in understanding Fibromyalgia.

>I encourage you to read more

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