Deep Breath, Start Fresh

The theme for Invisible Illness Week is Deep Breath, Start Fresh.  How can you take what you have learned with a chronic illness and move forward, continue to live your life?  My first thought on this:  I have to forget my past, forget the life I once had and plow ahead.  I shouldn’t dwell on how easy it used to be to do my daily duties as wife and mother.  This is the here and now, and I can’t look back.

There are so many references in leaving your past behind, just Google it and you will see.  So it MUST be the right thing to do, right?  Who could forget the scene in The Lion King between Pumbaa and Timon, when trying to convince Simba of this. 

Pumbaa:  It's like my buddy Timon always says: you got to put your behind in your past.
Timon:  No, no no. Amateur. Sit down before you hurt yourself. It's "You got to put your past behind you."

I have been struggling with this concept.   Which past do I put behind me?  The pain-free, energy-filled pre-Levaquin days, or the 14 months of recovery post-Levaquin?  The truth is I can’t forget either one.  I can’t forget the part of me that enjoyed singing, traveling with my family, being involved with my kids activities, being the “fix-it” person of our household, being a mother and a wife.  That is who I was and still am, even though these things no longer come easily.  I also cannot leave behind those I have met in this horrific journey of my adverse reaction.  Many people I initially met are still suffering, and daily I meet those newly affected.  I can’t turn my back and pretend these people have never come into my life.  Can I somehow move on, and yet still embrace a little bit of all of it?

In the Alice in Wonderland movie, the Mad Hatter complains to Alice, “You’ve lost your muchness.”  Then as he points to Alice’s heart, “In there, something is missing”.   The Mad Hatter points out to Alice that she has lost who she used to be, her true essence.  She has lost the things in her past that make her Alice.   She later has to reclaim her “muchness” to slay the Jabberwocky.  As in Alice, at the end of The Lion King, Simba is reminded by the Great Spirit, “Remember who you are!”  He realized that his past, even though gone, was instrumental in his present self.  Without this knowledge, Simba would not have been able to win back his family’s pride.

A big part of my past was singing in my church choir.  This past week I dug down deep into my soul and found a part of my “muchness”.  I went to choir practice for the first time in well over a year.  Every joint and muscle in my body hurt after that 1 ½ hours; but I will not let Levaquin take this part of my past away from me.  It is a part of who I was, and still am.  It is a part of my true essence.  After 14 months, I think I deserve to get this part of my life back.  I have decided it is time to start doing this in other parts of my life as well.  I have to win back my “family’s pride”. 

Why do we have to leave our past behind?   Aren’t we also taught that the past is who we are?  That we learn from our history?  I think the answer may be a little bit of both…remember who you really are, regain your muchness, find your true essence, but then take a deep breath and start fresh.

Thanks for reading!

30 Things About My Invisible Illness You May Not Know

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 pills & vitamins. (No comments, please)

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!