The Psychology of It All

It has been just over 6 months ago that I was floxed for a second time.  I now realize that my previous symptoms were from my "mild" reaction in May of 2009.  So in reality, I have  been dealing with this now for one and a half years. After my second reaction, I remember reading the posts on all the Fluoroquinolone information pages, praying that I would have a quick recovery, that I would not have a story like all of the others.  That unfortunately did not happen, but at least I have “met” a lot of strong and courageous people who are fighting this same battle daily.
 

The psychological impact of Fluoroquinolone Toxicity, or any medical condition for that matter, is just as important as the physical aspects.  This is a difficult topic to share, but yet I feel it is very necessary.  It seems it is easier for us to share our physical ailments.  Sometimes it can be very daunting to think this could affect the rest of my life, and the fact that the damage still may not be completed can be overwhelming.  It is hard not to replay that day in my mind when Levaquin was inserted into my IV, and to think about the trauma it is doing to my body.  I get anxious when I have to drive by the facility where this happened to me.  To make matters worse, it is by Target.  Why oh why, does it have to be by TARGET!!  The constant doctor’s appointments, wars with insurance, people who don’t believe, add to this.   I now find myself scared of medicine---traditional medicine, alternative medicine, integrative medicine, you name it, and I have a fear of it.  Fortunately, my neurologist understands this and does not pressure different treatments on me.  In fact, he too is worried how my body will not respond to things now.

Some days I feel as if I am in a time warp. I feel very disconnected from myself and everyone around me, as if I am watching, but not really participating.  I am sure anyone who has gone through an illness, death in the family or any traumatic event can relate.  Usually that feeling goes away in a short while, and you eventually return to your normal way of life.  However, what if you are being reminded daily of this event, by the physical ramifications or even from the grief?  I feel like such a hypochondriac at times.  I see other people  post symptoms that they are having, and I think, “I have that!” and the thing is, I really do have that!  I feel at times I am walking around with Eeyore’s big black cloud hanging over my head.  How do you make the event that is so “large” in your mind, diminish so you can move on with your life?

I have a difficult time in doing anything by myself, some for physical reasons, and others because of the fear of what might happen. The fear of pain, in itself can be discouraging.  If I do too much, then I am left to suffer with the consequences.  I have this anxiousness, which was there before, but now it has magnified.   It is exaggerated by not knowing how to plan for tomorrow, next week, or next month because I don’t know what I will be physically capable of that day.   I get discouraged, and start to doubt my body’s ability to heal.   However, I am trying hard to push myself to get out more, to mingle and interact with others.  I find this can help take my mind off of the pain, even if it is for a short while.

My body and its capabilities are now different, so I too have to change my future plans.  However, it does not mean I have to give up. I have to learn to move on with this new life I have been given.   I am not trying to make it seem simple.  It is not, by any means.  It is a daily struggle.  Some days that struggle is more difficult than others.  On those very frequent days, I think I sound like the Queen of Hearts being demanding and barking orders to my family.  “Off with their heads!”   I have to learn that patience is my friend, for I truly think the only healing cure for any of this is time.  It is o.k. to have these feelings; it is our normal human response to any tragic event.  Nevertheless, I have decided I have to step away from the grief, not be consumed, and have a new vision, new priorities.  I have two choices with this war within myself, continue the fight or surrender.  I have decided I like the first option best. But, winning the war requires embracing the enemy and facing the psychology of it all.

Advocacy: You'll Never Walk Alone

I have been trying to figure out my purpose in all of this.  Then it dawned on me.  I have become a Medical Advocate.  I have been placed in this role several times in my life, not realizing that my life always seems to steer this way.  As an Occupational Therapist, I was an advocate for my patients. I was a therapist that always explained things in full detail to my clients, and often gave them educational material for support.  I wanted to make the transition during this difficult part of their lives as painless as I could.   It was up to me to speak for them in our weekly rounds, to make clear their medical needs.  Did they need a longer length of stay?  Was further care needed for them after discharge?  Did they need assistive devices?  I had to document my thoughts well for insurance and for the attending physician, because if their needs were not well articulated, it could affect the life of the person for which I was advocating.

I left that role when my children were younger, feeling the need to be with them during their impressionable years.  Little did I know that I would be once again thrown into the responsibility of medical advocate.  In 2006, my daughter was diagnosed with Epilepsy.  I was horrified by the diagnosis, but I think I was even more horrified by how I was told.  She had been given an EEG prior to seeing the pediatric neurologist.  It was just my daughter and myself at the appointment.  We had never met him.  The doctor arrogantly strolled in the room, never made eye contact with us, and loudly proclaimed that she had epilepsy, and her EEG was severely abnormal.    She would most likely not outgrow it, and she needed to be put on medication immediately.  Here is the prescription; you need to make another appointment.  He left the room as quickly as he had entered it.  I was dumbfounded.  I could not believe the harshness of it all.  My daughter, who was 8 at the time, did not understand his words, but she certainly could tell something was wrong by the shock on my face.  I could not believe I was not given any educational material.  Not a nurse, a social worker, or any one came to explain to me what was actually being said.   I could not believe we were being thrown into this alone.  I was a therapist with some understanding of neurological problems, and yet I still felt I needed education.

I, of course, poured myself over the computer, found wonderful support groups, and met other moms that were dealing with the same situation.  They shared their stories, which made me realize I really wasn’t alone.  My daughter went 3 years battling getting control of her seizures, mostly because the doctors would not listen and kept prescribing more and more medications that were wrong for her.  We went through 4 neurologists until we finally found one that listened.  However, we came to another road block.  We had finally found the right medication, but insurance refused to pay for it.  I fought tooth and nail to get the one medication that finally helped to be covered by insurance.    I found a well worded letter can still do the trick.   She has now been seizure free for 1 year and 7 months.   

I did not want others to have to go through what I had, with the feeling of nowhere to turn.  I took the lead from the mom’s that had shared their stories with me, so I started a carepage for her.  I was advocating for her, yet helping others along their journey too by documenting our successes and failures. 

I was beginning to think it was time for me to possibly return to work, or find a volunteer job.   However, my life once again had other plans.  I had my severe adverse reaction to Levaquin, and here I am again.  I am a medical advocate once more, this time for myself.  The hours of research, doctors appointments, bills piling up on my kitchen desk, and the insurance fights have begun.   As you can see I have again decided to document my trials and tribulations.  I want to warn others of the dangers of Fluoroquinolones, and yet help others going through this know they are not alone.  I want to share personal stories, because those were the ones that seemed to help me most with my daughter’s diagnosis.  

Not long ago I watched HBO’s Temple Grandin, about a remarkable woman’s journey through Autism.  Two scenes in particular really moved me.  One, when Temple and her mother attended an Autism conference; Temple proudly stands up and tells the audience what it is like for her to have Autism. You could see the hunger of the other parents wanting to learn from her.   She owed all of her success to her mother’s advocacy and pushes to allow Temple to fit in.  It made me feel proud as a fellow mother and advocate for a daughter.  I think I even sat up taller on the couch during that part. 

  

The second was at Temple’s college graduation.  She had overcome so many obstacles and was speaking in front of all her fellow graduates.  With the utmost confidence, Temple starts singing “You’ll Never Walk Alone”.  To me, it explains perfectly the reason why I have been a medical advocate during my career, as a mother and now for myself and others with Fluoroquinolone toxicity.  I want others to know, you’ll never walk alone.   This is why I write my blog.

You'll Never Walk Alone

When you walk through a storm

hold your head up high

And don't be afraid of the dark.

At the end of a storm is a golden sky

And the sweet silver song of a lark.

Walk on through the wind,

Walk on through the rain,

Tho' your dreams be tossed and blown.

Walk on, walk on with hope in your heart

And you'll never walk alone,

You'll never, ever walk alone.

Walk on, walk on with hope in your heart

And you'll never walk alone,

You'll never, ever walk alone.

I've Got That Floxie Feeling

Some people call it ‘brain fog’ or ‘fibro fog’.  I call it the “floxie feeling” (derived from “floxed” used by those with Fluoroquinolone Toxicity).  I have days where I literally feel drunk and feel it is unsafe to “operate heavy machinery”.  I can’t find any rhyme or reason to it.  There have been no medication changes, lack of sleep, or foods that seem to be the culprit.  On these days of feeling inebriated; I stumble when I walk, drop things incessantly, my face feels numb, and cannot have a single clear thought.  It feels as if I have been to the local bar and kicked back more than just a few.  Believe it or not this feels just as frustrating as days when my pain is unbearable.

On normal days, I already have difficulty with my memory.  I can’t think of people’s names I have known for years, word finding problems, and can’t multi-task.  I used to complain “pre-floxing” that my first child took half my brain and the second took what was left.  I THOUGHT I had memory problems.  Now I KNOW I do.  It is all on a different level now.  I do really dumb things now, like give my husband's birthday for myself when going to vote.  Luckily I was able to laugh it off when the lady said VERY loudly, “This isn’t your birthday!” in front of both strangers and friends.   

My cognition has improved tremendously from those first few months though.  At that point I could not follow a television show; unless it was one I had seen a million times, which pretty much limited me to Disney’s Hannah Montana or Wizards of Waverly Place.  Forget reading at that point.  I could not even complete a sentence, and would have to re-read the simplest statements to even begin to comprehend it.   Even though I could not read a sentence, oddly I could compose one.  Of course that was after what seemed like hundreds of rewrites and corrections.  I still can’t read complex information.  I often just throw it to my husband and say “Read this, and then tell me about it.”  My writing is still better than my comprehension.   I know somewhere along the way of my OT studies I learned the reason for this.  I know that comprehension and expression are in different areas of the brain.  I guess one was spared more than the other for me. 

'Never imagine yourself not to be otherwise than what it might appear to others that what you were or might have been was not otherwise than what you had been would have appeared to them to be otherwise.'
'I think I should understand that better,' Alice said very politely, 'if I had it written down: but I can't quite follow it as you say it.

Math, oh that is something else all together.  My daughter has given up asking me for help with her math homework.   I cannot do even simple computations.  I have to rely on my twelve-year-old to get me through a game of Monopoly.  Is this the right change?  Should I buy this?  How much do they owe me with all of the utilities?  One night at my daughter’s basketball game, the coach asked me if I would collect money of those entering.  I literally felt panicked inside.  I can’t even count change anymore!  On top of that I was to remember the faces of those who had paid versus those who had not.  Not a great task for someone with no math or memory skills.  Couldn’t they have hand stamps??   I know- I will get my husband to sit with me and make sure I am doing it correctly.  The next thing I know he is asked to keep score.  Well, there goes that plan.  I somehow made it through, although it was not the easy task it should have been.  I am sure I made quite a few mistakes, and if I remember correctly, got a few confused looks.   I wish I could wear a sign around my neck for situations like this.  “Please be kind to the woman in the chair.  She lost her quick thinking skills due to Levaquin.”  It is one of those “invisible illness” misfortunes.

 

My family is starting to catch on to this “floxie feeling”.  Don’t ask Mom to drive anywhere.  Leave really big notes on the kitchen counter such as…."Mom do laundry today!"  Chime in at the doctor’s office when they want to know a birthday.  Be ready to fill in the blanks when Mom stops mid-sentence and can’t remember a word. 

For some reason when I have this really bad, I sing to myself, “You’ve Got that Floxie Feeling” to the tune of “You’ve Lost that Lovin Feeling”.  Try it, it works.

You’ve got that floxie feeling,

Oh, that floxie feeling,

And now it’s gone, gone, gone, oh oh oh.

Well, at least I was left with some sense of humor.

New Year, New You

'I could tell you my adventures — beginning from this morning,' said Alice a little timidly: 'but it's no use going back to yesterday, because I was a different person then.’

A new year has been proclaimed the start of new beginnings.   I am usually one that always jumps on this bandwagon.  I am a big organizer, I love organization, and every year this is usually a New Year’s resolution for me.  I have to get everything back in order, which somehow lost its tidiness the previous year.   This year, in my mind, it is no different; the storage room, the closets, the kitchen.  Ugh! The kitchen!  This has really lost its orderliness.  Having reduced power in my house because of my Levaquin reaction has really taken its toll on my kitchen.  I am so thankful my husband has stepped up and has helped out in this area; unloading the dishwasher, being the sous chef to my executive chef.  However, my kitchen has taken its toll.  Nothing is where it should be.  It is driving me absolutely crazy!  Believing I can do all of the normal undertakings like every year, I decide the kitchen is the first job to be tackled.  I found out quickly my typical resolution is just not going to happen this year.  Usually a thorough organization of my kitchen will take a day.  This year, our small pantry took a day.  Not because it was so terrible, our pantry is rather small, but because my body will no longer do those type of jobs.   Throwing away out-of-date food, getting my spices in alphabetical order (again), and putting everything back in its proper place completely wiped my arms out.  This was just another reminder that my endurance and strength are now quite pathetic.

This leads me to my other typical pledge for the year, getting in shape.  This has an all new meaning for me this year.  I am (or was) a regular exerciser and have been for the past 10 years.  Strength training has always been my favorite choice, but I would do just about anything to get out of aerobic activities.  As some of my close followers may know, I started having a difficult time with exercise a few months after receiving Levaquin in May, 2009.  From that point on, I was getting weaker in my workouts instead of stronger.  My workouts had gone from 1 hour 4 to 5 times a day to barely making it through a 15 min routine.   I was tired all of the time.  I, of course, never knew what the culprit was.  Even my doctor wanted me to be tested for MS.  It wasn’t until my second reaction to Levaquin in July, 2010, that the pieces were put together. My first “mild” reaction had already started causing havoc on my peripheral nerves.  I know now that was the cause of my symptoms- peripheral neuropathy.   The second “severe” reaction in July absolutely did them in.   So, this year I am starting from rock bottom.  I am determined to get my endurance up.  I have started walking on the treadmill.  I am able to walk a meager .3 miles at a big whopping 1.2 miles per hour.  I used to walk my dogs 4 miles a day in about an hour.  At this rate, it would take me 4 hours to do that now.   My legs will not move any faster.  If I attempt to walk faster, my legs feel as if I am walking through concrete and protest in pain.

I took a break from my blog for the holidays.  I had planned on returning to it much sooner than I did.  However, I have had a bad relapse of symptoms.  Problems that had gotten better or even disappeared are back.  I have read from others that this is typical.  Most report that they have a relapse after about 6 months or so.  I am holding true to that description.  It has been exactly 6 months since Levaquin was poured into my veins from that IV.  Oh, how I wish I could time travel back to that day and stop it.  It is amazing how something that took only a few seconds, has now changed my life.  As I peruse my list of symptoms, only 4 have not returned so far.   The myoclonic jerks, heart racing, decreased balance, and insomnia have improved.  In fact, I have gone from unable to sleep more than 2 hours in 24 hour period, to wanting to do nothing but sleep.  I do still occasionally have insomnia if I am in great pain, but nothing compared to the beginning.   The joint popping had completely disappeared, and now every joint pops, grinds, and groans.  I feel it the most after sleeping.  When I get out of bed, I literally feel every vertebra in my back and neck pop as do my ankles, shoulders, elbows, knees and hips.  My hips grind as if the synovial bursae is just no longer there.  The weight fluctuation has stopped, but unfortunately on the high side.  All of this inactivity has taken a toll on my weight, and I am now the heaviest I have been sans pregnancy.  So, you guessed it, another resolution to try to get this weight off the best I can. This will be difficult since I still can’t move very well.   

I am not sure what has caused the back slide.  Is it just the normal course of Fluoroquinolone toxicity?  Is it all the bad eating habits I adopted during the holidays, or simply the lack of routine?  Is it the natural course of peripheral neuropathy?   I am not sure of the answer, but I am determined to try to stick to my goal of a daily short walk on my treadmill.  I have read that activity will increase blood flow to hopefully encourage repair of the nerves.   I also know the loss of these extra 30 pounds will make it easier on my joints.  I am hoping pledging to the world these things; I will comply with these declarations. After all, as the world has professed, a New Year means a New You.  Yeah, right!

Update:  My lactic acid blood test came back normal.  I am not sure what this means for my next course of action.  I also am not sure if this will totally rule out mitochondrial dysfunction.  I am not scheduled to see my neurologist until the first of March.  I have updated my symptoms list, and also added some new links to the other pages.

Thanks for reading!