One Patient's Positive Perspectives

Last week was National Invisible Chronic Illness Week, sponsored in part by www.invisibleillness.com.  Although I am a week late in recognizing this helpful awareness campaign, it is still worthy of some special attention.

Various health bloggers have been encouraged to post answers to the questions posed at the related blog, so I thought I would add my two-cents worth, as well:

30 Things About My Invisible Illness (Lupus) You May Not Know – Click this link to read other health blogger’s responses to these 30 invisible illness questions.

Lupus Adventurer’s responses to the 30 questions…

1. The illness(es) I live with is/are:

Systemic Lupus Erythematosus, asthma and degenerative disc disease (three herniated cervical disks, one pushing into my spinal cord)

2. I was diagnosed with it/them in the year(s):

@1990 SLE, and @ 1995 asthma, DDD @ 1987

3. But I had symptoms since:

I was a little girl – arthritis & joint pain/stiffness starting at 5, sun triggered discoid rashes at 6, anemia at 10, pleurisy at 12, etc.

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

Having to stay out of the sun –  I love being outside, so this was really difficult to accept

5. Most people assume:

I am not sick, because my illness is invisible, and because I don’t whine when I am hurting, and when I am sick my cheeks look rosy and red

6. The hardest part about mornings are:

Thinking, pain and joint stiffness.

7. My favorite medical TV show is:

House

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

My bicycle in the stationary fluid trainer, inside my house out of the sun

9. The hardest part about nights is/are:

The onset of neuropathy pain/irritation in my leg nerves, waking up in the middle of the night from deep bone aching/pain, and insomnia.

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

9 medications, 4 vitamins/supplements, 3 asthma inhalers (yes I have asthma, too)

11. Regarding alternative treatments I:

Always listen to my rheumatologist, who embraces traditional and alternative medicine, and ONLY take the ones he prescribes

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

Invisible, because it does not have to define me or what others think about me, I choose who knows and how much, it is more private

13. Regarding working and career:

I am thankful for my employer and coworkers who honor the ADA and accommodate my illness with adjusted work schedules and real encouragement

14. People would be surprised to know:

That most of the time when I am smiling, and even truly showing joyfulness, I am also experiencing a great deal of pain

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

That my type A personality has to live inside a type C body

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

Learn to play the piano.  I studied music in college but never mastered the piano, and now, despite my CNS involvement, I praise God for the ability to do this!

17. The commercials about my illness:

Someone You Know Has Lupus – I like this past Lupus Foundation of America lupus awareness slogan the best – 1 out of every 150 people have some form of lupus, and 90% of lupus patients are women.

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

Going fishing, canoeing, sunbathing, swimming in outdoor pools, taking the bus to work & walking the handful of blocks to my office from the bus – I prefer meeting people, and being able get to know random people out in my community on the bus, rather than driving alone to work

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

Playing the violin because my left finger joints balloon from the vibrato motion, and the pressure from pressing down on the strings.

Also, following doctor’s order to give up teaching 2-3 year old Sunday school classes at my church, after going on chemotherapy drugs and having elevated immune system suppression risks.

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

Blogging

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

Go hiking again with my husband in the mountains on a beautiful spring day, and go fishing.

22. My illness has taught me:

About what the hymnist called, “Sunshine in my soul, more glorious and bright than flows in any earthy sky, for Jesus is my light.”

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

When people tell me there is some secret cure or thing I could do, that would cure my lupus.  Although they don’t intend it to be, this can be very hard to take.  If I could get rid of my lupus, I certainly would!

24. But I love it when people:

Understand and accept that I have limits without judging me for what I cannot do.

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

Neh. 8:10, “… the joy of the Lord is my strength” – a joy that flows through my life deeper than illness or pain.

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

Do not be discouraged, learn about your lupus and how to manage it, and don’t let lupus define you.  You cannot choose the things that come at you in your life, like lupus, but you can choose your response to them.  Choose not to be a victim, and become a victor.

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

People sometimes actually try to imply that it is all in my head, not a real illness in my body.  They must mean well, but it comes across like them saying I am faking it, lying, or a hypochondriac.  It sometimes feels like I don’t have their “permission” to have lupus.

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

Pray for me!

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

I am an advocate for lupus awareness.

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

I am humbled and honored that YOU are showing an interest in lupus and taking time read my blog!

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Comments on: "Lupus and National Invisible Chronic Illness Week September 12-18" (4)

  1. M. Bowen said:

    Inquiry, please contact me

  2. lupusadventurer said:

    Thank you both so much for your comments on this post! I am honored you took the time to visit this blog and give feedback! LA

  3. Hello I I stumbled upon your site on The internet the other day and I am very delighted that I did!
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    Thanks for the tips for Lupus and National Invisible Chronic Illness Week September 12-18 …, a great blog post!

  4. Living with invisible illnesses is very challenging. My health issues are different, but I understand the frustration and isolation, and comments by those who don’t understand. I fortunately found three healers in alternative medicine who understand through their own experiences, and are helping me. I am also blogging about it at fergiemoto.wordpress.com. I’m glad there are more awareness campaigns and websites to help people like us who have invisible illnesses. I am wishing you the best on your current journey.

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