I have chosen to blog again this year for Invisible Illness Week through Bloggers Unite. Our first assignment is to complete the "30 things" survey, to educate other bloggers about our illness.
1. The illness I live with is:
Peripheral neuropathy and a medication induced neuro-muscular disorder caused by Fluoroquinolone Toxicity.
2. I was diagnosed with it in the year: July, 2010 after a second and very severe adverse reaction to Levaquin.
3. But I had symptoms since: May 2009 after my first time to be given Levaquin, but they were mild.
4. The biggest adjustment I’ve had to make is: Having to slow down, let others do for me.
5. Most people assume: I feel great, because I look “normal”
6. The hardest part about mornings is: I move very slowly because my muscles feel very heavy.
7. My favorite medical TV show is: Dr. G: Medical Examiner, Mystery Diagnosis, Grey’s Anatomy (o.k. that was more than one.)
8. A gadget I couldn’t live without is: My hand controls for my car.
9. The hardest part about nights is: I am beyond worn out and the electrical zaps from the neuropathy.
10. Each day I take 4
11. Regarding alternative treatments I: have not tried many myself. However, the use of Silver-thera socks for my neuropathy and physical therapy together have allowed me to go medicine free.
12. If I had to choose between an invisible illness or visible I would choose: Hmmmm, neither.
13. Regarding working and career: I was fortunate to be a stay-at-home mom, so I did not have to worry about trying to maintain a job. However, being a mom is job enough with a chronic illness. I needed a lot of extra help and support for the first 6 months, until I could gradually start taking back my normal “duties”.
14. People would be surprised to know: It was caused by an antibiotic, Levaquin. (Fluoroquinolone Toxicity)
15. The hardest thing to accept about my new reality has been: I can’t be as active as I once was. Things tire me out much more quickly and cause muscle and joint pain.
16. Something I never thought I could do with my illness that I did was: Start a blog, and become an advocate for others affected by this medication
17. The commercials about my illness: There are no commercials about what I have. Most doctors will not even acknowledge these severe adverse reactions from Fluoroquinolone antibiotics. Fortunately, my doctor does. This makes the community of thousands that are affected by these meds, feel even more alone. However, more and more medical evidence is being published. A recent article in The Annuals of Pharmacotherapy supports the fact that Levaquin can cause this.
18. Something I really miss doing since I was diagnosed is: Camping, hiking, white water rafting, and exploring nature with my family.
19. It was really hard to have to give up: my independence and role as CEO of our household.
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 on a hike in the Mountains.
22. My illness has taught me: God is with me, even through the tough times.
23. Want to know a secret? One thing people say that gets under my skin is: “You don’t look sick”
24. But I love it when people: talk to me about other things beside my illness.
25. My favorite motto, scripture, quote that gets me through tough times is: Philippians 4:13 ~ “I can do all things through Him who strengthens me.”
Joshua 1:9 ~ “Have I not commanded you? Be
strong and courageous. Do not be afraid; do not be discouraged, for the LORD
your God will be with you wherever you go.”
26. When someone is diagnosed I’d like to tell them: It will get better, don’t despair. It really, really does!!
27. Something that has surprised me about living with an illness is: How self conscious I felt using a cane and handicapped parking sticker, when I was at my worst. It was hard for me to let people “see” my weakness. I don’t use these things now.
28. The nicest thing someone did for me when I wasn’t feeling well was: Give me a Kindle when I no longer had the strength to hold open a book.
29. I’m involved with Invisible Illness Week because: I feel empowered by helping others know they are not alone, and to spread awareness of adverse reactions to Fluoroquinolone antibiotics that lead to chronic problems.
30. The fact that you read this list makes me feel: very happy.
To learn more information about Fluoroquinolone Toxicity please join us at Fluoroquinolone Antibiotic Toxicity (Cipro, Levaquin, Avalox, Floxin) and Saferpills.org
Thanks for reading!
2 comments:
Stopping by from Invisible Illness and wanted to thank you for sharing your story. I had no idea and illness like your even existed. Wow.
I'll send extra prayers your way.
Enjoying reading your blog and the answers to the invisible illness questions. I love that you have used the Alice and wonderland theme and quotes, it really does feel like that doesn't it!
Your photos are interesting, my right ankle is the most affected too. Visible muscle wasting there and no where else weird.
Kia Kaha
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