Tuesday, July 17, 2012

Two Year Floxiversary: Lessons Learned

`You're thinking about something, my dear, and that makes you forget to talk. I can't tell you just now what the moral of that is, but I shall remember it in a bit.'

"'Perhaps it hasn't one,' Alice ventured to remark. "'Tut, tut, child!' said the Duchess. 'Everything's got a moral, if only you can find it.'"
- Lewis Carroll, Alice in Wonderland, Ch. 9

Today, it has been two years since receiving that ill-fated dose of Levaquin.  I haven’t posted in a while; I have been trying to use this time to reflect on how my life has changed, and to find my new role in life.  At times, I feel so consumed by it all, I wish I could run away and just hide.  While other times, I feel I have embraced what has happened.  I have dealt with chronic illness for six years now, first with my daughter's epilepsy, and now my Quinolone Toxicity and peripheral neuropathy.  Having been a healthcare provider as an Occupational Therapist, I have insight from all three perspectives; as a caregiver at work, a caregiver in the home, and now as the care receiver.   I will say the latter, has taught me the most.  The following are valuable lessons I have learned dealing with chronic illnesses from all three points of views, especially the past 2 years.  While a few of these will be familiar from previous blog posts, others are new.   I don’t necessarily always remember these lessons, and I probably need to review them myself at times.  This list is a stream of consciousness.  I thought it would be short, but it kept growing.  I would love to hear from you.  What lessons have you learned?
Make doctor appointments on Mondays or early in the week.  On Fridays everyone in the office is ready for the weekend, including the doctor.  He may not be as focused on you, but more focused on his weekend getaway.

Make appointments first thing in the morning or first appointment after lunch, this will reduce your wait time.

Bring something to read, in case you could not get the first appointment.

Ask your doctor how he is doing.   He probably doesn’t get asked this much.  He spends all day listening to other people constant complaints, and probably very few have asked him about his day.

Fire your doctor if he is not working with you, you feel he does not fully listen, or you don’t trust his decisions.

Always make a list of questions you have for your doctor.  In such a short amount of time spent with him you will more than likely forget something.

Educate yourself about your diagnosis.  Knowledge is power and you can have a much more meaningful conversation with your doctor if you know all of the medical terms, treatment options and available testing.  Read books, research online, talk to others with the same diagnosis.

Take notes or have someone go with you to take notes.

Keep track of all medical information.  Get copies of medical records from all of your doctors.

Have doctors share information.  Make sure all tests are forwarded to all your doctors with a summary note.  This will help stop duplicate testing.  

Start a "Care Book" (See page)


Be prepared to fight insurance.   Insurance will always say no the first 2-3 times, but be persistent.  They are hoping you will give up, that is what they are counting on.  I found a well worded letter can still do the trick.

Research what medication you are being prescribed!  Ask the nurse what they are injecting into your IV before they do it. 

Medication can help with pain, and don’t be afraid to use them.  But proceed with caution!

Know you are not alone; 1 in2 people have a chronic illness.  Find support groups even if they are online.   People you meet online can sometimes be your best support. 

Remember most of the people you meet in online groups, are the ones that have not yet gotten better.  Those that have improved usually are no longer actively posting. 

Share your story, so others can learn from you.  Through sharing, you may receive advice, a doctor suggestion, or an idea you have never thought of before, that may make a difference in your health.

The Internet is not always right.

Educate your family and friends if they are willing to listen. 

Realize not everyone is going to “get it”.  Some will always think it is your fault; it is due to too much stress, lack of faith.  You have to learn to move on, and not get stressed that they don’t understand.  Find people that do understand.

It is NOT your fault that you are suffering from a chronic illness, or any illness for that matter.  We are human and are susceptible to all kinds of diseases, human error, or accidents.  Instead of asking why me, ask why not me?  We will all get something, at some point. 

No one experiences pain the same, and how it affects a person depends on their lifestyle and responsibilities.
It is o.k. to cry…you may even have a pool of tears.  Grieving for your former self is normal.

Watch for signs of depression.

Focus on what is “right” with you.

Write a journal.  Mine is online, but yours doesn’t have to be.  It is a good way to help with frustrations and anxiousness.

Be positive, surround yourself with positive people.  Avoid negativity.  That will not help you get better.

Ask for help.

Rely on your church, friends, and family for support.  They want to help.

It is hard to accept help!

In helping others, send cards, make a phone call, send an email, bring food in disposable containers, it is ok if you don’t know what to say.  Don’t be embarrassed that you have waited too late to call.  Any time is better than not at all.

Teach your kids all household chores; you never know when they will need to help because you are unable to do it.

Remember, your family is going though this as well.  It is not just you affected by the chronic illness.  Not all of them will react the same way.

If you are having a bad, crabby day….warn your family, and then go to your room!

Get a temporary handicapped hang tag, even if you never use it.    At least that option is there if the situation arises.

Use the handicapped space when you need it.

Don’t abuse your handicapped tag.  If there is a close space that is still reasonable for you, save the handicapped space for those who need it more.

Don’t be ashamed to use assistive devices.

Get outside of your comfort zone, test yourself, you may have gotten better and not know it. Take a trip!

Pace yourself, don’t overdo it.

Plan your day, allow extra time than normal incase fatigue hits.

It is o.k. to do nothing.  Take a nap.

Get help in the home, if your are able.

No pain, no gain no longer applies for exercise.  Slow and easy wins the race from now on.

Eat healthy.

Plan out your weekly meals:   Ask friends to prepare meals that can be stored in the freezer for future use.  If your husband travels, have him grill extra chicken before he leaves to be used later in the week.  If you are having a good day, make things to stock in your freezer for when you are not feeling well.  Use www.emeals.com for food planning, and your grocery list.

Chocolate cake is perfectly acceptable for your kids for breakfast.

Pets can be the best comfort.  They are good listeners and don’t give bad advice.

Beds can go unmade.

Read something NOT related to your illness.  Take a break from it.

Listen to uplifting music.

Crow a little.

Be grateful!





 “One day at a time--this is enough. Do not look back and grieve over the past for it is gone; and do not be troubled about the future, for it has not yet come. Live in the present, and make it so beautiful it will be worth remembering.” - Ida Scott Taylor

Thanks for Reading!

Sunday, March 11, 2012

The Mighty Mito ~ Part 3

The day finally came; I had my appointment to review my results with Dr. K.  I wasn’t expecting much, because I had received copies of my reports prior to meeting with her.  I had seen for myself, nothing seemed to be jumping out as real problems.   The only thing that appeared odd was that I was low in 18 of my amino acids in the urine test. I was hoping this would be important in some way.  However, I was told that this was not of significance and can vary throughout the day.  That was frustrating to hear to say the least.  My buccal swab test was normal for Complex IV and for the Complex I, it was .1 below the normal range.  Again, this is not significant.  The buccal swab test is only 82% accurate.   I knew this when entering into this way of testing, but I wanted to try the least invasive way.  Buccal swabs cannot test for Complex II and III of the mitochondrial chain.  It is only a screening test. Non-invasive evaluation of buccal respiratory chain

 Dr. K basically said the next step is a muscle biopsy, but I refuse to do it.  The reliability rate for that is also low.   She stated that she knew people who have had 3-4 biopsies, all of which have come back with different results.  I feel for me, there is not enough true benefit to do it.  Yes, it MAY perhaps give me a “name” of what has happened, but she would not treat me any differently. The risks however, far outweigh the benefit in my personal opinion.  I feel my body would not handle an invasive procedure like that very well, and it is still a high possibility the test would tell me nothing.  She still believes that Levaquin was "toxic" to me, and that it probably did damage my mitochondria, just no proof of it.   She wants to retest me in November, a year after my first tests, to compare the results.   Perhaps later down the road, I will still choose to do the biopsy, but for now- NO.

So, to put it briefly, this is what my current doctors “think”:  Dr. K- mito toxicity from the Levaquin, but can’t be proven; My neurologist, peripheral neuropathy (small and large fiber) confirmed by testing and a possible myasthenic disorder, which has yet to be proven; Rheumatologist, not a rheumatological problem, he believes it is all neurologically related.  All 3 have mentioned mito as the underlying cause.  All 3 agree Levaquin caused my current problems.

“I can't go back to yesterday because I was a different person then.”
Lewis Carroll, Alice in Wonderland

I have decided that Levaquin is the perfect perpetrator of a crime.   It leaves no evidence behind, just the damaged body.  What makes it more frustrating is that it can be totally invisible.  To others, I look “normal” even healthy to some.  I have had comments even within the fluoroquinolone community, that I look “healed”.  I would think, they of all people would know how you look on the outside, can be deceiving of how you feel on the inside.  Very few see me on days where I cannot get dressed because of fatigue and pain.  When people see me, it is because I am having a better day, and I still want to look my best.  Just because I put on make-up, wash my hair, does not mean I am healed.  It is the double edged sword of an invisible illness. 

Fatigue is still one of my most limiting factors. I have two types:  Central fatigue, meaning my overall energy level is decreased to the point it can be debilitating. The second is muscle fatigue, where my muscles cannot maintain performance in an activity, especially repetitive ones. They become sore, weak, and shaky causing me to stop what I am doing.  Driving, unloading dishwasher, folding clothes, washing hair, stairs, even stirring a pot of food are just a few examples of what can be a problem.  You can imagine this makes it difficult for me to feel I have much of a productive day. Some disorders cause both, some disorders may only cause one of these types of fatigue. It wasn't until I read this article did I realize how complex the problem of fatigue can be to medically solve.  Fatigue in neurological disorders 

I have been taking my "mito cocktail" of supplements now for 3 months and it has helped my central fatigue significantly.   I now feel like I can get up and do something.  However, nothing seems to help the muscle fatigue, so that continues to be a limiting factor .  I introduced each supplement slowly, so to be aware of any problems each may cause.  The supplements that were suggested to me by Dr. K include: 
            L-Carnitine 330 mg , 3 times a day (this is prescription strength)
            Alpha Lipoic Acid 300 mg twice a day
            Coenzyme Q10 600 mg a day
            B2 (Riboflavin) 100 mg a day
            Creatine 5 grams a day
So far, so good, the only supplement that she suggested that I have not begun is creatin.  

I have had many emails, some asking if I believe I will be healed.  The answer to that question is a difficult one, nor do I think  it can be answered with certainty.   I will admit, since my 2 year mark is fast approaching, I am becoming less hopeful.  However, I am so much better than I was those first 6 months, and for that I am very thankful.  I am learning to adapt my life, to accommodate for the symptoms I have been left with.  I drive with hand controls; I take frequent rest breaks; I leave the heavy household duties for others in my family; I don’t over plan my day; and if I am feeling wiped out, I make sure I rest. 

"Would you tell me, please, which way I ought to go from here?"
"That depends a good deal on where you want to get to," said the Cat.
"I don’t much care where--" said Alice.
"Then it doesn’t matter which way you go," said the Cat.
"--so long as I get SOMEWHERE," Alice added as an explanation.
"Oh, you’re sure to do that," said the Cat, "if you only walk long enough."
(Alice's Adventures in Wonderland, Chapter 6)

When I started this blog, I thought it would only be for a year.  I would document my journey, what I did to get better, and then wrap it up with success.  That has not happened yet.  My voyage has taken me down paths I did not intend.  I have become an advocate in the fluoroquinolone community, a co-moderator for one of the largest online support groups, began volunteering for www.saferpills.org, and work daily to help others who are just now starting their own journey through an adverse reaction.  Is this the life I had planned?  Certainly not, but who does have that kind of life which they planned, with absolutely no bumps or detours along the way.  The best I can do, is make the most of what I have now.  So, for now, I will continue with my daily “cocktail”, keep advocating, and take one day at a time.  For you never know what healing a day can bring.  

Thanks for reading!

Friday, December 9, 2011

The Mighty Mito ~ Part 2

As promised, I have an update from my visit with Dr. Kendall, a mitochondrial specialist.  In my last post, my husband accused me of writing for Wikipedia, saying it was pretty boring.  Well, it is sort of hard to make Mitochondrial Disease sexy and exciting, but I will see what I can do.

I really like Dr. Kendall and I definitely feel I have come to the right place for answers.  She strongly believes I have Mitochondrial Disease based on my own medical history and that of close family members.  She said I have too many “red markers” for Mito to ignore it.   We are going forward with the extensive testing, which includes a buccal swab test for mtDNA and blood/urine tests.  We have opted not to do the muscle biopsy (a common diagnosing tool) at this time.  We both would rather avoid something so invasive, since my body has had slow healing time after other minor injuries.  There are currently 1500 genes involved in the mitochondrial process, and with current technology, only 40% can be studied.  She stated that no matter what the test may or may not show, she has no doubt I have Mito, and the problems could very well lie in the 60% of the genes they can not yet study.  I could possibly have both forms of it, genetic (based on family history) and toxic (caused by the Levaquin).  The combination of the two may explain why I am no longer making improvements. During her exam, she also reconfirmed dysautonomia and gastroparesis.  I am to have a gastric emptying study to learn more about the gastroparesis. 

In our further discussions, she asked me a little about the FQ support groups in which I am involved.  I gave her an overall synopsis of the symptoms people seem to suffer after an adverse reaction to a Fluoroquinolone Antibiotic.  She has seen others affected by Levaquin, and said for the most part; those with “true” toxic Mito seem to improve.  She has however, seen a few that seem to get “stuck” in their recovery for whatever reason.  She does believe that in general, those that have a Mito toxic reaction to medications most likely had a genetic mutation which allowed the medication to affect them.  There are varying degrees of this problem, so I would assume that would account for the multitude of ways people are affected.  

So, in a nutshell, I have been diagnosed with Mitochondrial Disease.  It will take until March to get all of the labs back.  There is no cure, especially if there is indeed a genetic component.  However, there is treatment to help encourage the cells to function at their maximal potential.  In the meantime, I will start on the “Mito Cocktail” once all labs have been drawn.  It seems this cocktail varies person to person with which supplements are used and the amount given.  I am sure mine could change based on what the findings are. 
I do believe I have found my answer to why Levaquin affected me the way that it did. I don’t necessarily think this is true for everyone who has been affected by FQ antibiotics.  I have always jokingly said that my family would make a great medical research study because of all the rare disorders present.   I think in a way, this is what my testing may in fact do.  In this process, I could also be inadvertently helping other family members get long awaited diagnoses.    I am sure I am just beginning to learn what all this diagnosis will entail for me.  

I will periodically update my blog to give the status of how the cocktail is going, and to also let you know what my labs indicate.  I can’t promise I will do it often.  I just haven’t had the energy for it lately.  I realize I did not follow through with my promise at the beginning of this post.  So, for my husband……Once upon a time, there was very sexy, exciting  mitochondrion that was stalked by a dark, deadly Fluoroquinolone Antibiotic…….Well, you know the rest.

Thanks for reading!

I have added a page tab for mitochondrial disease which includes many links.

Monday, November 14, 2011

The Mighty Mito (Part 1)

I have been away from my blog for quite a while, and I have had several emails requesting an update with how I am doing. (see my symptoms list for an update).  This blog post focuses on my next steps in my journey to hopefully more healing, the investigation of the mitochondria.

Mitochondrial dysfunction has been resurfacing time and time again among the online groups and discussions with my doctors. What is mitochondria?  The mighty mitochondria is the “power house” for our cells, without them our bodies cannot function at its optimum.  Mitochondria are organelles in our cells that convert nutrients into energy for our bodies and are responsible for 90% of cellular energy.  When they are malfunctioning, they can cause a “brown out” of any or several body systems. 

 I have avoided being tested for mito dysfunction, because of the dreaded muscle biopsy.   However, I have continued to research this theory, and several discoveries have made me finally pursue this possibility:

First, I have had 3 doctors mention mitochondrial dysfunction to me, and each independently recommended a muscle biopsy.  I certainly have not wanted to undergo something so invasive.  So, until now, I have put this request to be tested on the back burner.  It has now been almost 1 ½ years since my last reaction to Levaquin.  My pain has greatly reduced, and I no longer require anything for pain.  It still resurfaces occasionally, but the pain is bearable without the use of medication.  However, the muscle fatigue, digestive problems, exercise intolerance, autonomic dysfunction and fasciculations have started to increase again.  These all still interfere considerably with my quality of life.  Multi-system problems, muscle fatigue and exercise intolerance are the hallmark symptoms for mitochondrial dysfunction.

Second, my family history also has me wanting to research this further.  Disorders that run in my family (Parkinson’s, epilepsy) have been linked to mitochondrial disorders.  I think it is possible for me, that I had mitochondria that perhaps where not functioning at their optimum, and Levaquin “did them in”, so to speak.

Third, MitoAction.org has several interesting podcasts that possibly support this hypothesis.   One titled “Drug Toxicity and Mitochondria” actually discusses Fluoroquinolones that have been found to cause mito dysfunction.  (Minute mark 52)  Trovafloxacin, a fluoroquinolone antibiotic, was found to cause mitochondrial damage and was withdrawn from the market.  The speaker then proceeds to say, that once one medication in a drug class has been found to cause mito dysfunction, it is safe to assume others in the same class will do the same.  That is enough for me.  

Fourth, I have found that one of the top docs for mitochondrial dysfunction is very close by; I could not pass this opportunity up.   Dr. Fran Kendall is the medical adviser for MitoAction.org.  She is on the cutting edge of research and does much of her testing through buccal swabs and blood tests first.  She has found that muscle biopsies are less than 30% accurate in diagnosing mitochondrial dysfunction; therefore, muscle biopsies are the last resort for her practice. 

Dr. Kendall sent me a packet to complete that wanted everything, including the kitchen sink.  She wanted a detailed description of family medical history going all the way back to my grandparents and their siblings, medical records and of course my own history.  I sent the 80-page packet of information to her, which she will review before seeing me.  Despite having an appointment with her, I am still not certain that I will actually be tested for mitochondrial disease.  It depends on a lot of factors: what Dr. Kendall thinks, how I feel about her after our first meeting, and testing involved.  I do feel it is at least worth this first step in the investigation.

What happens if I do get a diagnosis for mitochondrial disease?  Mito-toxicity from medications is thought to more than likely improve.  I guess the big question would be, “Do I have both genetic and toxic mitochondrial disease?”   There is no cure for genetic mitochondrial dysfunction; however there is treatment to allow your body to function at its optimum.  These include diet, exercise and a “mito cocktail” of supplements.  I know this is what many are doing now in the FQ toxicity world, but for me, I am tired of haphazardly taking supplements without knowing what will or will not truly help me.  Guidance in this area would be greatly appreciated.  

Perhaps, this is the reason some seem to improve after their adverse reaction.  Suppose the theory that FQs damage mitochondria is true.  Could it be that those with a "pure" toxin induced disorder are the ones that improve?   Could it also be that those of us that don’t heal, had an unknown subtle dysfunction before, and this has made it worse?  I wonder if that is the difference between those who get better, and those who don't.  Bear in mind this is MY theory, and none of it is based on fact.  I am curious to hear Dr. Kendall’s views on Fluoroquinolone antibiotics and the mighty mitochondria. 

Thanks for reading!

Coming December….The Mighty Mito (Part 2)

Monday, September 12, 2011

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!

Thursday, September 1, 2011

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!

Friday, August 19, 2011


The months of July and August pulled a fast one on me…the old bait-and-switch. Our family made it through the month of July relatively unscathed this year.  Well, except for the Suburban.  July has historically been our "bad luck" month,  but the first of August hit me with several hard punches and hard they still are.  
I have been diagnosed with diverticulitis, and if any of you have ever had this, you know it is far from fun.  The restrictive diet, along with the antibiotics, in itself can be hard on a healthy body, and even more on one already weakened.  If that was not enough, the CT scan to diagnose the diverticulitis found a suspicious “spot” on my left ovary, right near the diverticulitis.  That of course, led to an ultrasound which confirmed a dermoid cyst, which is actually classified as a tumor (cystic teratoma).  They are congenital, meaning I have had it my whole life.  It most likely still is slow growing and benign.  Of course, it will still have to come out, but there is no rush.

Now I know some of you are wondering if this is related to my Levaquin reaction.  Well, the dermoid is definitely not, since it is congenital.   The jury is still out about the diverticulitis.  I do know it is often genetic, and it does run in my family.  I also have a long history of digestive problems since my pre-teen years.  However, after my adverse reaction, I feel everything about my digestion changed.  It was not the same at all.  Also, a previous colonoscopy pre-Levaquin showed nothing.  There was no evidence of diverticulosis, the precursor to diverticulitis.   So, I do feel I was more than likely “prone” to this based on my history and family history, but I also feel the changes caused by the Levaquin precipitated it.

For now I am on a very restrictive diet for the diverticulitis, and the antibiotics Bactrim and Flagyl.  I fought hard against the Flagyl, since it is also known to cause severe side effects, and is contraindicated for those with Peripheral Neuropathy.  However, I was not improving.  So after many tears, I said a prayer and swallowed the pill down.  So far, it has only mildly increased my PN symptoms.  This has shown me that I can survive antibiotics post Levaquin.  I am waiting to see my OB/GYN on how to proceed with the dermoid.  I do not see him until late September.  He more than likely would not be able to do anything about the growth anyway until I have healed from the diverticulitis, which usually takes 6-8 weeks.  

On that note, I would like to put out a small request; I hope You are listening up there.  Would September and October possibly be kind to me, because the July-August “bait-and switch” has just about done me in.  
Thanks for reading.