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 Disneyland Park

30 Things About My Invisible Illness You May Not Know

Get your own list and answer and send it on at invisibleillnessweek.com

Prize Give Away! Fill out #iiwk09 meme “30 Things About My Invisible Illness You May Not Know.” Copy it from our web site here: http://invisibleillnessweek.com/?p=2301 – Share it with others via Facebook “notes”, your blog, etc. THEN… post a COMMENT on our blog http://invisibleillnessweek.com/?p=23 w/ the link to where you posted it and we are going to choose 2 people to receive a prize Sept 5th, 2009.

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  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 www.invisibleillness.com

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I Need Some Space… Space Mountain That Is

:en:Space Mountain at :en:Disneyland in :en:Au...
Image via Wikipedia

If I had paid any attention to the warning signs before I got on the Disneyland ride, Space Mountain, a high-speed, turbulent ride not recommended for those with weak stomachs, heart problems, etc. I never would have gotten on.

The truth is, despite this being my favorite childhood ride, I’ve skipped it a lot in the last 16 years since being diagnosed with rheumatoid arthritis.

But this last weekend, although I have physically been in a new season (translation – in a lot more pain and with permanent joint damage), I had a few motivating factors to get on the ride.

One, my six-year-old son was with me and I wanted to surprise him. Mom is always the one that sits on the sidelines. And while I won’t risk havoc on my body for a 20-second  jerky roller coaster they pop up at the fairgrounds, I will for a “smoother” Disney coaster. Afterward when we asked him what he thought about it he said “I was shocked” and “It was awesome!” I’m glad I got to experience that with him.

Secondly, I used a wheelchair the entire time, even from the hotel over to the park, so I wasn’t thoroughly thrashed by the time I stepped out to get on the ride. Usually just walking 10 more feet to get on a ride is enough of a deterrent, but I was in decent “shape.” And putting some of my silly pride aside and using the wheelchair I got to experience a great deal more of our vacation.

space-mtnAnd thirdly… well… I just wanted to throw caution to the wind and do something out of the ordinary.  (Even, dare I say it? Irresponsible!) After 11 months of my body demanding its own way all of the time, culminating in a diagnosis of diabetes last week due to my high blood sugar, I thought I’d show it who was in control. I was in control of my body and I wanted to go on Space Mountain. (Add in a little feet stomping there like a 2-year-0ld.)

And you know what? I was fine. Funny how I can barely climb 15 stairs without my knees popping out of place, but a good thrasing around on a track is exhilirating. How many times had I said, “I’ll just wait for you. I can’t do that. I shouldn’t really go on that?” A lot. And I didn’t want anyone counting on me. One look at the Autotopia cars and I said “I’ll meet you at the end.” There was no way Icould get in and out of those!

But surely a rollercoaster gives my body a strong, fast dose of endorphins and they are also pain relievers. So, with that theory, we went again the next day. As I waited in line beside other people in wheelchairs, or with scooters and canes I saw anticipation on their face, and when they exited, exhilaration, joy, just pure fun. Faces were flushed with the thrill.

Those of us with chronic conditions are some of the bravest people I know. And if we have to sit through MRIs with knocking and vibrations, why not go on Space Mountain too? The burdens were lifted and lessened even if just for a couple of minutes.

I know my limits. I wrote this blog in a notebook while sitting at a table while my husband and son went on the Matterhorn. Even if I could stand the jolts in that ride, I couldn’t get in and out of the low car one must ride in. But for now, I can still grit my teeth and grab my husband’s hands and slowly pull myself up out of the car of Space Mountain. Unfortunately, since we were in the car for those with disabilities, we never saw our photos. But trust me… I did it. (And small secret, I want to do it again.)

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