You Have WHAT!?!?

"'Well, I never heard it before,' said the Mock Turtle; 'but it sounds uncommon nonsense.'"
- Lewis Carroll, Alice in Wonderland, Ch. 10

“What do you tell people when they ask, what is wrong with you?” asked my husband, after returning from a lunch with an ex-coworker.  “I was just wondering, because I don’t have a good one-liner to give anybody, a good zinger.  I end up going into this long explanation, and then end up losing them.”  

“Good question,” I told him, “I don’t know either.  People with MS or Fibromyalgia, they have a one-liner to give people, but I don’t have a very recognized diagnosis.  I do the same thing”.

I forget sometimes that not everyone has a medical background, and I start using terms I used as an Occupational Therapist.  People start look at me with this glazed-over look.  They want the zinger.  It is even harder when most of the medical community doesn’t even recognize it as being true, and the fact that it was caused by the very medicine that was supposed to help me.  Who would think that an antibiotic would cause such a thing?  I mean REALLY!

O.K., I am going to start using some of those words now, don’t start wondering off.  Iatrogenic means an illness that is inadvertently induced by a physician or surgeon or by medical treatment.  They are not caused intentionally, but never-the-less they happen.  All of the victims of Fluoroquinolones have an iatrogenic illness.  So, should my one-liner be, “I have an iatrogenic illness”?  Hmm, I think I would definitely lose people there. 

Most of us affected by Fluoroquinolones now have a chronic illness.  A chronic illness is defined as lasting more than 3 months even despite having treatments.  I know what caused it, but no one understands the mechanisms of it.  Why did it happen?  What is really going on in my body?   Do I just simply say, “I have a chronic illness,” and leave it at that?  But you see, to just say that frustrates me.  I just can’t bite my lip and not educate people on being careful with prescription medications.  Here it comes; here is my mini lecture….

Research what you are being prescribed!  Ask the nurse what they are injecting into your IV before they do it.  I wish I had.  I knew I was allergic to Levaquin.  But they just said, “We are giving you an antibiotic just in case”.  I was so out of it from the food poisoning; I could not think to ask what it was.  They knew I was allergic to a medicine which I could not think of the name.  The doctor rattled off a bunch of medication names.  No, that was not it.  The nurse entered and said, “O.K. here is your antibiotic”, and injected it into my IV.  As soon as it entered my body I started having a severe reaction.  I asked after what it was they gave me.  “Levaquin”, he said.  Oh crap!  That was it!  I recognized the name immediately.   I have learned a great lesson from a horrible experience.  Always ask what you are being given, or if you are not in the right state of mind, have someone go with you to ask.  If I had just asked first, I would not be going through this.

I have gotten side tracked; back to the question- what do I tell people?  I could say, “My peripheral nervous system has been damaged.”  But then, that usually leads to the question of why.  Then the comatose stares start because before I know it, I am giving a mini science lesson on how peripheral nerves work, and the dangers of Fluoroquinolones.  That is the neurologic OT in me.  I am interested in this stuff, and kind of get excited about it.  I forget that not everyone is. 

 

The Peripheral Nervous System is the group of nerves that connect the muscles, joints, skin and internal organs to the brain and spinal cord (the Central Nervous System).  They are the electrical wiring of our bodies.  Therefore, my symptoms are vast, since all types of these “electrical wires” seem to be affected in me.  Neuropathy means there is a disease or, in my case, a malfunction of the nerves.  In some of my nerves the outside protective covering, like in an extension cord, has been damaged.  Without this covering (the myelin sheath), the electrical current can’t travel down the wiring (the nerve fibers).  In others, the connection is slow as when an internet connection is slow.  My muscles twitch and contract on their own like when your computer has a miscommunication.  It suddenly goes haywire and travels to a page you did not tell it to go to.   I have joint, muscle pain, muscle weakness as I have mentioned before, but my skin also hurts.  I have digestion problems.  The temperature control in my feet is all out of whack.  It can be 100 degrees outside, but my feet are freezing.  This has my neurologist concerned.  What is going to happen in the winter?  The list could keep going, but I would really get that glazed look from you now; therefore, I will stop. 

You see my dilemma; it is not an easy answer.  It is hard to give a one-liner, a zinger.  Perhaps the easiest is, “I have peripheral neuropathy due to a medication reaction”.  After that, you may want to run for the hills, because the mini science lecture will most likely start.

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I am going weekly!  Beginning November 1st, all posts will be updated on Mondays.  Be sure to periodically check my other pages, since I do update them occasionally. 

Life in the Rabbit Hole

'It was much pleasanter at home,' thought poor Alice, 'when one wasn't always growing larger and smaller, and being ordered about by mice and rabbits. I almost wish I hadn't gone down that rabbit-hole — and yet — and yet — it's rather curious, you know, this sort of life! I do wonder what can have happened to me! When I used to read fairy-tales, I fancied that kind of thing never happened, and now here I am in the middle of one! There ought to be a book written about me, that there ought! And when I grow up, I'll write one.'

When I look back at my life long before entering the Rabbit Hole, I realize I used to have such an active life.  As a therapist, I would have to be at the hospital by 6:45 a.m. to be ready to see my first patient.  I would sometimes run all day, client to client, nonstop with the exception of lunch.  Once my son was born I returned to work part-time, but still my life was hectic with a newborn.  Three years later, the new addition of our daughter added to our crazy filled lives.  I think back to what my days were like then.  I had energy; I kept the house so clean even Bree Van de Kamp would have been green with envy!   I worked part-time, helped raise two kids, attended soccer games, recitals, school parties, exercised, and put dinner on the table.  You get the picture.  I was just like most women with a dual income household and two kids.   I eventually quit my job as an Occupational Therapist, but I could not stay home for long.  I was not a type of person to sit still.   I then worked at our church preschool as an assistant teacher in the pre-K class, and volunteered almost as many hours in the children’s program at our church.   I enjoyed doing things around the house, landscaping our yard, painting the inside of our house.  When my daughter was diagnosed with Epilepsy I even had to include “teacher” as a new job, since she required homeschooling for a year.  Whew!  Just thinking about it makes me tired now. 

Now some days after taking a shower, getting dressed, and blowing my hair dry I am totally fatigued.  I usually throw on whatever is the easiest, a pair of sweats and an old t-shirt.  The house is a mess and beds go unmade.  This is the norm now.  No longer Bree Van de Kamp, now I am more like Oscar in The Odd Couple.   It is embarrassing that a grown woman like me, still with 2 teenage kids at home, appears so lazy and slovenly.  I hate that I don’t have energy to pull myself together.   I no longer have the energy to attend my kids’ activities.  I miss being the one in charge, attending church, even grocery shopping; and I miss EXERCISE!  I love how it made me feel energized after a good workout.  I want to shout to people sometimes,

 

“I am not a lazy person; this is driving me crazy too!  I want to exercise and get stronger, but my body won’t let me!” 

I feel I am still that woman who could not be still, trapped in a body too tired to let her do anything.  I have to find that balance now.   I can do a few things around the house, but not too much.  I am starting to exercise again, but if I push myself too hard, I can’t do anything else.  In this case, pushing is just doing a few simple yoga exercises.  My muscles won’t let me do anything too strenuous.  If I try too many activities, I pay for it the next several days, sometimes unable to get out of bed.   It is very hard to know exactly what that balance is.  Some days I don’t get it right.  

This past Sunday I attended church.  It was good to see people again.  I have been sequestered in my house for 3 months.  However, it is a long distance between our sanctuary and the Sunday School classes.  As I walked that long hallway, my legs became more and more tired.  I felt as if I had run a marathon by the time I got to my destination.  I was trying to also have a conversation at the same time and was getting out of breath.   A far cry from my former self, which I am determined to get back.   I am improving.  I look back to the first few weeks of my reaction, when I was literally writhing in pain on the couch.  I felt I had become permanently fused to those couch cushions.  I had been there so many days.  You know I am kind of getting sick of that couch! Maybe it is time for a new one, hmmm, but I digress.  

 I have done a few shopping trips with my family, I am making dinner now; I am trying to get back into society, and attend my kids’ activities.  But for some reason this week, I am having a relapse of my symptoms.  The all over burning is back, and my arms, which I felt were starting to get some strength, are feeling weaker again.  Yesterday was a day spent in bed because of pain.   I am puzzled why I have made such a decline this week.  Is it too much activity?  Something I ate?  Some Fluoroquinonlone victims report that the symptoms cycle.  They come and go, as if in remission, but then are hit hard with what they thought they had recovered from.   Perhaps that is what is going on. 

I don’t much like this life in the Rabbit Hole; it is a far cry from where I want to be.  I think climbing out of it is going to be much harder than when I fell into it.  Never-the-less it is a climb I will have to endure.  A climb, which unfortunately, is going to require a lot of patience to get to the top of the Rabbit Hole.
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Mystery Solved?

I have always loved a good mystery. It has been my favorite type of book to read.  The medical field has also fascinated me, and I often think I would like to be Dr. G on Discovery Health.  When my daughter was first diagnosed with Epilepsy, I felt I had become a regular Nancy Drew trying to find out the mysteries of her illness.   I felt that it was my responsibility as a patient, or in her case as a mother, to be well informed of what was happening and to help the doctor with this process.  I could not just sit back and take the word of every doctor without investigating it for myself.  We have to be our own medical advocates.  I am convinced this is one reason my daughter finally improved.  Her doctors were over medicating her, and not one of the child neurologists in that practice would believe me.  I finally concluded if the doctors were not willing to listen to me, then it was time for them to be fired. Yes, I said fired!  I found another doctor 3 hours away, but it was worth the drive.  When the doctor first walked into the room, he just looked at her and proclaimed, “She is toxic!  She has all of the signs.”  This conclusion was backed up by a simple blood test that the others had refused to do.  He literally saved our daughter’s life.  The life she was losing, because doctors refused to listen to a mother’s instinct. 

I think doctors sometimes forget they work for us, not the other way around.  We have hired them for their expertise to help solve the mystery that is occurring inside of us.  I now have spent hours doing detective work on what is happening to me.  I have been appalled by the number of people I have found who have been affected by Levaquin, or other Fluoroquinolones.  I have been very fortunate that I have found not one, but two, neurologists that agreed that I now have a neuromuscular disorder because of Levaquin.  Many people have not been this fortunate, and doctors have turned them away, not believing that an antibiotic could cause such a thing.  However, if the doctors would just take the time to read the Levaquin information sheet, most of these side effects are listed as being possible.   It is even stated that they may become permanent!  My first neurologist did just this.  He immediately reviewed the information sheet and did research online while I was sitting in his office.  I appreciated his open mindedness.  To make sure he wasn’t missing the mark, he referred me to another neurologist.  This one seemed even more convinced of it.  He had served as a military doctor and even stated he saw more lives in the military “messed up” by Levaquin, than any other drug.  He never prescribes this medicine because of the bad effects he has seen from it.  

I have been poked and prodded by 5 different doctors, been given every blood test there is under the sun, MRIs, nerve conduction tests, EMGs, and full body scans.  All of this was done just to conclude I have no other underlying conditions.  All test came back normal except one blood test indicating I had inflammation in my body (duh, kind of new that) and the nerve conduction/EMG test.  My muscles no longer respond normally and the peroneal nerve in my right leg has been damaged.   The final verdict- I have a “drug-induced neuromuscular disorder”.

Three months later, my doctor doesn’t know when, how fast, or even if I will get fully better.  He can only treat my symptoms, since little is known what to do for such a response from a medication.  I am leery of taking more medications, since that is what got me into this mess. He appreciates this, and is very much including me in treatment discussions.  (You can see the list of my treatment choices on the “Symptoms, Medical Findings, and Medications” page.)  He has offered to start me on Nuvigil, a medication used for MS, since some of my symptoms mimic that disease.  However, because of my reluctance to be on unnecessary medication, and the fact insurance will not cover it for my current diagnosis, I am not going to try it.  It would be an experiment anyway, just to see if it worked.  So, for now, my treatment is time.  This seems to be the plight of most of us experiencing this.  We all help each other and share information on what has worked or not worked for us, since the medical community is at a loss of what to do.    That is the reason for this blog.  I feel it is my way of sharing my experience, my knowledge that I gain from trial and error.

In most cases, if a person has neuromuscular problems because of an adverse reaction, the disorder resolves after the medication has been stopped.  It is unknown why Levaquin symptoms persist in some of its victims.   One theory is that Levaquin, and other Fluoroquinolones, never leave the system.  It is always lingering there, causing the problems to persist because Levaquin crosses the blood-brain barrier.  Other theories believe that it affects us at the cellular level, or even our DNA.  I have seen on the Fluoroquinolone Toxicity groups, that some have gotten better in a few months to a year, while others I have spoken to are still suffering 5 years or more later.   Why does this drug group affect some and not others?  Why does some find healing and others don’t?  Perhaps this is another mystery for all of us victims  to help solve together through sharing our stories.

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Valuable lessons  I have learned dealing with chronic illnesses:

1.  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.

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

3.  Keep track of all information

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

With my daughter I started a "Care Book".  In a 3 ring binder, I included the following information, and it goes with me to every appointment.

1.  Contact and insurance information.  This includes a list of all of her doctors.

2. Medication chart.  This includes all meds she had been on, why they were stopped, the dates she took them, and if there were any side effects.  You would be surprised what you forget after many years of different medications.

3.  Labs, Test, and Hospital Stays.  I keep all copies of her test and lab results.  I keep record of all hospital stays and what occurred during them.

4.  Appointment Information.  This is where I keep all questions I have for the doctors, and what is discussed during each appointment.

5.  Correspondence.  This includes all letters to and from doctors and insurance companies.

Having all of this in one concise place has helped tremendously in her care.

Got Faith?

Because of my blog, I have received the most encouraging and wonderful emails from people I have never met from all over the world.  Through blogspot, I am able to see where my visitors are from and how many have viewed my posts.  Let me assure you, I cannot see who has visited, but in general where they are located.  I have had readers from 11 different countries.  That is amazing, and it also can seem a bit overwhelming that I am reaching people that far away.   I feel in some way that “the pressure is on” to reach my “audience” that I am forming.

My intentions for this blog have never been for religious reasons.  I simply want to share my experiences of dealing with an unknown, chronic illness. However, some of the emails I have received deal specifically with the issue of faith.  With visitors from so many countries, there is no doubt that there are at least that many belief systems among people reading this.  I certainly don’t want to offend anyone, and I am by no means, an authority on this subject.  However, I feel this cannot go unsaid.

Since being afflicted with this adverse reaction to Levaquin, I have received all types of advice and suggestions.  They range from underlying causes to possible treatment ideas.  I truly appreciate all of them, for I know they are given with the best intentions.  However, sometimes the most comforting ones and at the same time the most hurtful ones, are regarding my faith.  I have been told that perhaps I am ill because I simply lack the right amount of faith.  I have even received books that also suggest this.  One particular book told me that if I read this book and accept all of its teachings, prayed more specifically, it will increase my faith, and therefore I will be healed by the time I finished it.   I broke out into tears, and promptly threw it away.  I was so angry!!

We are human, and because of that we get diseases, and have things occur to us because of human error. There are universal laws that simply apply to us, because we are human. It is not because God is punishing us, or because we have lack of faith.  I haven't been to church since this started in July.  At first it was because I was in such intense pain.  Now it is simply because I have to save what energy I have for my family, not because of lack of faith.  God understands this, even if people do not.  

Through all of my research of how to deal with chronic problems, I found Rest Ministries.  This ministry was started by a woman that has rheumatoid arthritis, and had difficulty finding the support she needed to deal with a chronic illness.  Rest Ministries is affiliated with Joni and Friends International Disability Center. It is NOT a ministry that proclaims physical healing, but that God is with you through the pains, the ups and the downs.  It does not promise that you will be healed.  I know people have fervently prayed to get well or family members that have prayed for loved ones, only to not get physically better.  I don’t think this means the person lacked faith.  I believe it is a part of being human.   I have found comfort in this ministry because it has helped me realize that I may not get back 100% to my former self.  That is o.k.  I will learn to deal with it.  Perhaps, I may not get physically healed, but maybe I am learning things that are spiritually healing.

I have found that I need to surround myself with positive thoughts, and avoid material that places the blame on me.  Although, I have received some “spiritual” advice that I don’t necessarily agree with, I also have received some great and loving support from those I have not met, or have not seen in years.  Those messages of love have meant more to me than anything.  Some have even brought me to tears, but unlike the book that said I lacked faith; these tears were oddly tears of comfort.  

So, to all of you who ask, yes I have got faith, and I do strongly believe in the power of prayer.    Does that mean everything will turn out great and I am guaranteed physical healing?  Possibly not, but I know that along the road, God will help me learn to cope, and make the most of this new life.

If you or someone you love suffers from an illness, check out the Rest Ministries or Invisible Illness Week links I have on my page.  They were started by the same person, and focuses on the love that God has to offer during times of illness.  I have read a couple of their books,

Why Can't I Make People Understand? Discovering the Validation Those with Chronic Illness Seek and Why (Conquering the Confusions of Chronic Illness) (This book gives insight into your own frustrations and emotions of dealing with an illness.   Not only is it beneficial for the person experiencing the illness, but for family members as well.)

Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend (Conquering the Confusions of Chronic Illness) (This is a small, but wonderful book, which gives great practical suggestions on how to be supportive of those dealing with illness.)

The Good, the Bad, and the Really, Really Ugly

Dear God, I want to thank you for being close to me so far this day.  With your help, I haven’t been impatient, lost my temper, grumpy, judgmental, or envious of anyone.  But, I’ll be getting out of bed in a minute and I think I’ll really need your help then! ~ Author unknown.

The Really, Really Ugly

Some days I am in a mood….I mean a really, really ugly, horrible mood.  It is so hard to be nice when you are hurting.  No matter how hard I try, I just can‘t seem to muster it.  I think at times all I need is the head spinning and the split pea soup to complete the picture.  Why is it so hard to be nice to family when you are suffering?  They definitely get the brunt of it.   How does my husband put up with me, when I can barely put up with me?  I am even horrified, by my behavior at times.  I don’t mean to behave that way, but the frustration of all of this just makes it easy for them to be a target.  There, now you know the evil truth…I can be one fussy Bitch.  

The Bad

Not only am I having physical problems from this Levaquin reaction, but my cognition is not totally there either.  Now, some would argue it was never entirely there to begin with.   I have word finding problems, reading comprehension problems, and sometimes my processing is slow, especially if more than one thing is going on.  I just can’t multi-task anymore.  This, as any mom would know, is what separates us from our husbands.  It is a universal truth that moms can multi-task, and dads can’t.  This just won’t do in times of making school lunches, coaxing the kids out of bed, and out the door in the mornings.   

Although,  at least now I have a legitimate excuse for some of my fumbles.  I can easily plead I am officially an airhead now because of Levaquin.   Let’s study some examples, 1) Forget a name- Levaquin.  2) Forget a word mid-sentence- Levaquin.  3) Slice my finger instead of the jalopeno- Levaquin.  See how convenient this can be?  Before all of this I had no excuse for such absent mindedness.  Wait, this could be a good, maybe this is in the wrong category.  

The Good

Hmmm, this could be a tough one.  Is there a good in all of this?  I am still having a hard time adjusting to this new me.  I am not sure if it will go away, or if it does, when it will go away.  But, I am learning all about the pleasures of slowing down.  Not like I have a choice about it, but you know, this slower pace life style is kind of nice.  I wish I had learned this sooner.  It also has encouraged me to pursue more quiet interests, like blogging.  I can’t read some of the in depth books I read before, but I am being introduced to some really humorous authors I would not have ordinarily read. 

 

 However, one of the most important “goods” is the affect it is having on my marriage.  Yes, as I stated under the “really, really ugly” we have had our moments, but it also has made us revisit those vows we took 21 years ago.  When you stand there so young and optimistic, repeating

“to have and to hold, from this day forward, for better, for worse, for richer, for poorer, in sickness and in health, until death do us part,”

 you really don’t think those negatives will happen.  Those occur to other people.  Or you think those years are so far away, we don’t need to worry about that.    But we are finding they happen to the best of us.   After realizing how severe my reaction to Levaquin truly was, it was sinking in on what a long road we have ahead of us.  My husband said, "Remember they say love grows stronger in hardships. Looks like we will be flaming love birds!"   Maybe those vows ought to include:  “I will be there for you during the good, the bad, and the really, really ugly.”