Thursday, July 28, 2011

The Picture of Health

I was recently asked how I was feeling to which I responded my usual, "so-so" or something to that nature because I really have no idea how to try and explain to someone how I feel on a daily basis.  The person responded with, "well you always look the picture of health".  I know this person was trying to be nice, but their words actually hurt me. 

Nearly 1 in 2 people in the US have a chronic condition and approximately 96% of those have an illness that is invisible. (Source) Yet, we are still so uneducated about invisible illness. I know I was before I became invisibly ill and I am even a nurse! This year the National Invisible Chronic Illness Awareness Week is September 12-18.  Lisa Copen founder of Rest Ministries founded Invisible Chronic Illness Week in 2002. If you or someone you know is suffering from an invisible illness you can find support at

One way to spread the word about invisible illness is to share about our own invisible illness. Here's my response to 30 Things About My Chronic Illness

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is:

Pudendal neuralgia (we think, hopefully we’ll know more in 3 weeks when I travel to Phoenix to see a pudendal neuralgia specialist). I also suffer from central sensitization (basically my nervous system is kind wound up causing hypersensitivity to pain). This has caused symptoms similar to complex regional pain syndrome and widespread muscle pains. I have had other diagnoses along the way as well including sacroiliac joint dysfunction and chronic myofascial pain syndrome and the generic chronic pelvic pain, so only God really knows what’s wrong with me!

 2. I was diagnosed with it in the year:

December 2010

 3. But I had symptoms since:

November 2008

 4. The biggest adjustment I’ve had to make is:

Not sitting or only sitting for short periods with a cushion that takes the pressure off my pelvic area.

 5. Most people assume:

                That I am fine because I am young, small, and look healthy (other than that cushion I carry around for my "back").

 6. The hardest part about mornings are:

If I do not get at least 8 hours of restful sleep I will wake up feeling like I worked out all night long. My muscles will be so tight and my neck especially will hurt.

 7. My favorite medical TV show is:

I don’t know what this has to do with anything. I don’t watch much TV, but I used to love the old series “ER”.

 8. A gadget I couldn’t live without is:

                Is a computer considered a gadget?

 9. The hardest part about nights are:

Sometimes falling asleep. The end of the day is the worst for me pain wise. Usually it feels like   my pelvis is on fire and there is a knife sticking in my sacrum. Also my legs/knees/feet/ neck/shoulders will be really tight and sometimes my legs/feet will burn. I also sleep walk some nights (always have) which doesn’t allow for restful sleep.               

 10. Each day I take __ pills & vitamins. (No comments, please)

Most days I only take 6 pills. But if I am in a flare I may take Ibuprofen around the clock or other pain medications on top of this.

 11. Regarding alternative treatments I:

Have tried acupuncture, but am not a fan (at least of the type I tried). I do love massage. I use a TENS unit occasionally (not for sure if that is considered alternative).

 12. If I had to choose between an invisible illness or visible I would choose:

Depends on the illness. I am not naive to think visible illnesses are easier, but I do think they get “respect” or attention from people that an invisible illness doesn’t get.

 13. Regarding working and career:

I am a nurse, but due to my pain and the nature of my profession I can only tolerate working about 8 hours a week, preferably in 4 hour shifts. Even this is becoming more difficult for me. It’s really bad for me to do bending, lifting, pulling and of course I do that every day as a mom to a toddler.

 14. People would be surprised to know:

I am in pain all the time. Some days are better than others, but I don’t remember what it felt like not to have pain anymore.

 15. The hardest thing to accept about my new reality has been:

                Not being able to do whatever I want, whenever I want to do it.

 16. Something I never thought I could do with my illness that I did was:

                I can’t think of anything. Maybe I haven’t lived with this long enough.  

 17. The commercials about my illness:

There are no commercials about my illness. It is extremely rare and there are only about a dozen specialists in the world who treat it.

 18. Something I really miss doing since I was diagnosed is:

Going on dates with my husband. It’s hard to go on dates when you can’t sit comfortably. We do occasionally, but it’s not extremely enjoyable like it used to be.

 19. It was really hard to have to give up:

Traveling for leisure. After living overseas and traveling to several countries I now only travel for medical treatment.

 20. A new hobby I have taken up since my diagnosis is:

                Writing. I used to write a good bit in high school, but enjoy it a lot more now.

 21. If I could have one day of feeling normal again I would:

Spend it with my husband and daughter and doing something fun like going to an amusement park. I would also sit and rock my daughter to sleep. If I could have a week I would go to India and share how God has been so good to me even in my suffering.

22. My illness has taught me:

So much! You can’t judge someone without really what’s going on in their life. Greater empathy for others’ suffering. And it has deepened my faith in the sovereignty of God more than anything else in my life!

 23. Want to know a secret? One thing people say that gets under my skin is:

Call me if you need anything. (It’s a nice gesture, but I need help everyday, do you really want me to call you every day? Why can’t others call me and offer to help me with cooking or cleaning or just to visit?)

 24. But I love it when people:

                Ask me how they can pray for me.

 25. My favorite motto, scripture, quote that gets me through tough times is:

                There are so many! But one of my favorite this last year has been
                Psalm 16:5-6
“The LORD is my chosen portion and my cup; you hold my lot. The lines have fallen for me in  pleasant places; indeed, I have a beautiful inheritance.”

 26. When someone is diagnosed I’d like to tell them:

Do not spend all your time researching and looking for a cure/healing. Invest your time seeking the Lord and how He would have you use this suffering for His glory.

 27. Something that has surprised me about living with an illness is:

People (even those closest to you) don’t know what to say or how to offer support. So most of the time they don’t do anything.

 28. The nicest thing someone did for me when I wasn’t feeling well was:

An anonymous person left Christmas gifts for me and my family on our front porch last year. I don’t know that we’ll ever know who it was. It was so kind and unexpected.

29. I’m involved with Invisible Illness Week because:

I want to get the word out. There are millions of people living with invisible illness and you don’t have to look very far.  There is so much you can do to minister to them. Don’t be scared to talk to them about their condition and don’t think that just because they have lived with this for 20 years it’s no longer a struggle for them. Just because you see them out at the park with their child or running errands, do not assume they are feeling better. Most people with chronic illness have to “suck it up” and go on with life as best they can.

 30. The fact that you read this list makes me feel

                Special! Now, go share what you’ve learned with someone else J

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