Merry Christmas and Happy Holidays!

My kids are off for the holidays starting tomorrow, so I have decided I am taking time off from my blog as well.  I will return after the New Year.    Thanks for all of the encouraging emails and messages.  You are all an inspiration to me.  So many of us are going through this battle together.  I hope everyone has a happy holiday and a pain free New Years.

Thanks for reading,

Lori

A Revisit With the Mad Hatter

Lots of news this week!  I met with the Mad Hatter again, that is my neurologist for those who are just now following.  I am not sure how he would feel if he knew I referred to him in this way.  He got this term of endearment when I met him the first time.  He is the kind of doctor that starts talking in circles; one train of thought leads him to another requiring me, as his patient, to round him back in and to the topic at hand.  It is this kind of thinking though that has me like him.  He is a doctor that loves a good mystery.  What a coincidence, so do I; therefore, it makes us a good pair.  He spent well over an hour with me as if he had nowhere else to go, discussing Levaquin and different theories of what is going on inside of my body.  He likes the fact I am actively researching information and sees this as a positive attribute, not a negative one as many doctors would.

He proceeded to tell me that I did indeed have both large and small fiber neuropathy with sensory, motor, and autonomic involvement.  What does that mean?  My peripheral nervous system is now a mess.  The good news- the large fiber nerves, those with myelin, usually repair themselves.  To what degree is unknown until it happens.  The large fiber nerves control the skeletal muscles.  I already see improvements in my right foot where my large fiber nerve (peroneal nerve) is damaged.  I can move my toes more and also have increased movement in my ankle.  I can heel walk now.  Not that heel walking is a very useful thing.  I don’t exactly go around walking on my heels, but it does show improvement.  My cane has also not been used now for the past few weeks.

The bad news- small fiber neuropathy usually does not improve, and that is what is responsible for all of the burning pain I have in my arms and legs.  I asked him about my other symptoms- numbness in my feet and hands, the constant feeling of a low voltage current running through my body, freezing feeling of hands and feet.  Yep, all related to small nerve neuropathy.  More bad news, small fiber nerves also control cardiac and smooth muscle (autonomic function).  More questions- Is that what is causing everything just feel “slow” in my body?  Is it causing the digestion problems, the no sweating, and the changes in my blood pressure, resting heart rate, and temperature control?  Yes, all small fiber.  Oh that is not good!  But, you know I felt relieved in a way.  It was all validation for what is going on.   

'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

All of this does lead my neurologist to ask more questions.  Why are my muscles as weak as they are and fatigue so easily?  Why was my EMG abnormal?  These are signs of large fiber neuropathy, but that only shows up on the nerve conduction test in my leg.  Small fiber neuropathy, which I have everywhere else, should not cause this much weakness.  One theory of Fluoroquinolone Toxicity is that it causes mitochondrial dysfunction.  I asked him about this and it really peaked his interest.  In a VERY simplified explanation, the mitochondria are the energy source for our cells.  If they are not working correctly our cells have no energy; thereby our bodies have no energy.   They are basically little engines in each cell that are responsible for oxygenation and getting rid of the cellular waste: lactic acid, toxins, etc. When the mitochondria don't work properly, it causes pain due to lactic acid build up and exhaustion since the cell is bogged down with waste.  This could account for the muscle weakness.  He has ordered testing for this, blood work that could show if I have an increase in lactic acid in my body.   There is a lot of research going on right now about mitochondrial dysfunction.  The thinking used to be this only occurred in children, but now scientist are realizing this happens in adults as well and could be the source of many disorders. 

So we ended our hour long meeting with the understanding we will look at the mitochondrial avenue.  Then we will proceed from there.  He has already informed me to count on meeting my deductible with him next year because he has some other things he is interested in looking into if the mito theory does not pan out.  I have been so fortunate to find this doctor.   He may not find the specific changes that Levaquin has done to my body, but he is going to darn well try.  He wants to know- Did Levaquin cause one big explosion in my body and I am left dealing with the aftermath, or did it cause an explosion that has now started a progressive disorder, or one that will not allow improvement?  That is a question only time may tell.

In the news front two large things happened that could affect my family’s life.  There was a break through with stem cell research in Epilepsy and Johnson & Johnson lost their first Levaquin trial!  I have links below to those articles.  I have also posted links for Small Fiber Neuropathy and Mitochondrial Dysfunction.
Thanks for reading!
Johnson & Johnson Loses First Levaquin Trial
Stem Cell Research Holds Promise For Epileptics


Small Fiber Neuropathy--Wikipedia
Small Fiber Neuropathy--Cleveland Clinic


Chronic Fatigue Syndrome and Mitochondrial Failure
Drug Toxicity and Mitochondrial Dysfunction

I will post these links on my Levaquin and Peripheral Neuropathy pages so they can be easily accessed later.

My Grown-Up Christmas List

Christmas following the aftermath of Levaquin, it definitely makes for a different holiday experience.  Instead of decking all of our halls, we have minimized our decorating.  We probably would have done even less, but the protests of our kids over ruled.  Our extent of decorating depended on their willingness to help.  My son placed the lights on the shrubs and daughter set up the half-lit reindeer.  After almost 15 years of use, I think the reindeer have seen better days.  We have convinced ourselves that from far away they look o.k.  This may be it for our 3 lighted deer.  After this Christmas, I think it is time they meet the big garbage truck in the sky.  Oh well, one less thing to set up next year.  

Our family as a whole is having a hard time getting into the Christmas Spirit this year.  I think my not having energy to do anything, has drained everyone else’s. We are finding we have to modify some of our traditions.  Christmas shopping has been different, but yet fun.  As I sat on the couch with my laptop and my husband across the room with his, we hit the Black Friday sales online.  In just a few hours, from the comfort of our home, all shopping was done in just a few clicks.  Hey, how come we haven’t always done our shopping this way?  It felt good having it all done so quickly and no crowds.  Now all of those brown Amazon packages are starting to arrive.  That was easy!

My family’s Christmas list is pretty typical of past years, but mine has changed quite a bit.  I now am asking for boring “old people” gifts.  An electric throw to help my sore muscles during this cold weather; knives with large handles so that my weaker hands can grasp them; a bleacher seat to endure sitting while watching my son wrestle and my daughter play basketball; warm shoes since my feet feel like they are in snow all of the time; and the perfect pair of socks.  Who would have thought that socks would be so difficult to find.  I feel like I did when I was a small child and complained about the seam at the toes.  The perfect pair of socks has to be soft, yet warm, not tight around the ankles, and have absolutely no seams.  This is a hard thing to find.  My husband says he has given up, and I am on my own for that one.

A few weeks ago, I was sitting in the car as my husband ran into the store for a few quick items.  I caught myself watching people walk across the parking lot, seemingly effortlessly.   I realized I was jealous.  I wish I could move that quickly.  I wish my walking was that smooth.  How I envy the world without pain, being able to do the things you do, not having to care about the pain you are feeling or the pain you will feel afterwards.   With Peripheral Neuropathy, pain follows you everywhere.  It totally encompasses every thought, it invades every conversation.  It goes to the store, to bed, to dinner, to church, everywhere.  That is what I would want most for Christmas, to be pain free.  But while I am at it, I want the same for others in my family that suffers the same way.  My mom suffers from Parkinson’s Disease and Peripheral Neuropathy; Dad has Peripheral Neuropathy, Myasthenia Gravis, heart disease and Diabetes.  My sister recently had bypass surgery and has many other unknown medical complications.  In a nutshell, my family is a mess and I am convinced would be an interesting scientific study.  Why so much rare diseases or adverse reactions in one family?

My mother recently joined Facebook, and I saw this as a post from her as prayer request to one of my cousins.  It brought me to tears. (I have removed names to protect the innocent)

You know, my first thought is for healing, but most times I think we really know that God doesn't mean for us all to be healed. I think I would ask ...that we keep God uppermost in our hearts and that He would grant us the courage and strength to live with the burdens that are ours. For (T), if I could, I would ask relief from the constant and brutal pain he endures...I would ask for at least some periods of ease from the pain. I would also ask for strength in his legs so that he may have the ability to move about in our home with more ease. And I would ask for me, increased strength to get through the day so that I might be a better helper to (T). And when you pray, please include (LB) and (LM)—(LB) is not yet stable from her heart surgery and (LM) doesn't know what her outcome will be. She, too, is in constant pain and suffers incredible weakness. Oh, and please include (A) in your prayers as he prepares to go to Paris Island on Dec. 20, to begin his basic training for the Marines. We pray strength and courage for him as he begins his career in the military. Oh, and I need to be able to go to bed and sleep at night, my body aches from tiredness and yet my mind fights sleep! WOW, I really let you have it didn't I! I asked much--but I know from Him much is given. Love you, M.

Yep, that pretty much sums it up Mom.  That is my grown up Christmas list!

How Are You?

“How are you?”  Boy! That is a loaded question.  It is funny how I react differently now to the typical greetings that everyone uses.   I am even so programmed in giving the typical pat response “fine,” that I responded that way to my doctor during one of my previous appointments.    He hurried into the room where I had been waiting for him.  “Hi, how are you today?”   “Good,” I answered without skipping a beat.  He stopped and looked at me with the questionable look of doubt.  “Really, you are feeling good?”  Oops, I guess I better be a little more honest with my doctor.  “No, not really,” I chuckled, “I am just used to saying that.  I am actually in a lot of pain, and not doing well at all.”   That is more like it, not smart to answer your doctor like you do everyone else.

I have been having a hard time with this question.  It really is a loaded one.  I could say “fine” or “good”, but then everyone thinks that I must be completely healed.   I could go into how I am really feeling, but I don’t think they want to hear about all of my aches and pains that I am probably hiding behind my smile.   "Some days are better than others;" I have decided this should be my general response.  It lets them know that today I am doing well enough to be out and about, but I don’t necessarily feel that way every day.  Heck sometimes I don’t feel that way every hour. 

`Who are YOU?' said the Caterpillar.
This was not an encouraging opening for a conversation.  Alice replied, rather shyly, `I--I hardly know, sir, just at present-- at least I know who I WAS when I got up this morning, but I think I must have been changed several times since then.'

“Well, you look good; you don’t look like you are sick.” I know everyone has good intentions when these common phrases are used.  I have used them too, hundreds of times.  It is odd how I read more into these good-natured remarks now.  They also lead to a cascade of different emotions.  Do they not believe me?  Do they think I am making up that I am in constant pain?  I have gotten better with these statements.    They used to really bother me when my body was first injured by Levaquin.  I have finally realized it is not the person sending these remarks that is causing these emotions.  It is me!  I am causing them.   I have this deep need to make sure everyone knows or understands what has happened to me, to feel believed.   I can’t let go of the doubt I feel others might have.  It is my control-freak inner self.

You know what?  Not everyone is going to understand or “get it”.  I have finally understood this revelation.  This eye-opener of what is causing these emotions has now allowed me to accept them for what they are.  They are well wishes sent by people who care.  They may not have the need to know every detail, but they are concerned enough to ask.  Now I realize it is nice to hear these compliments.  It is good to know I don’t look as bad as I feel.   So bring on your “How-are-you” and your “You-don’t-look-sick” remarks.  I now know how to accept them, and will proudly, and hope gracefully, embrace them.

Stubbornness, Family and Perseverance

Just after writing my last post about not using my temporary handicapped tag, I was having a particularly painful day.  However, I was determined that I was going to do the grocery shopping.  I had only done this once since July, and I was resolute in my objective to go by myself.  I was so discouraged having my husband do all of my household duties.  My jobs!  Don’t get me wrong, I am very thankful he has helped me so much, but after months of not being CEO of our household I am starting to feel I have no purpose.  I just can’t contribute like I want.  My husband pleaded with me not to go.  He could tell I was not feeling my best, but my stubbornness reared its head.  He was not going to tell me I could not go!

I drove to the store, and low and behold, I had to use my tag.  I knew I had to save my energy for the store.  I started my quest for all of our needed items.  That day it seemed we were out of everything including big heavy items.  As I started going down isle after isle I could feel the pain kicking in even more.  I was getting slower and slower.  I somehow retrieved everything and proceeded to the checkout.  I pulled my cart in and attempted to unload my items.  I couldn’t do it.  My arms were completely wiped out.  The bagger finally realized I was having difficulty and finished the task and helped me out to the car.  I could not believe the amount of pain I was in.  I did not feel this way the last time I went grocery shopping by myself.   I had put myself in a situation in which I could not turn back.  Thanks goodness for the close parking space, but I still had to drive myself home.  My husband fortunately was home.   He unloaded and put all the groceries away while I sat there in tears.   I was so frustrated that an undertaking I should be able to do, was so difficult for me.  I decided to go lie down for “just a minute”.   I woke 4 hours later.  

It was not a good way to start the week; I had no idea what my week would have in store for me.    I knew my husband was going to be out of town; my daughter had a basketball game, and my son a wrestling match.  Both of which I really wanted to attend.  I could have gotten someone else to drive my daughter to her game, but I had already missed her first one.  She has been unable to play for so many years because of her epilepsy, and I wanted to be there.  She had a great game.  There were only 7 players and 1 got injured during the game, so she had to stay on the court almost the entire game.  Her stubbornness would not let her sit down, even when she was exhausted.  They lost the game, but it was close.  She was smiling ear to ear, even after getting knocked down a couple of time.  “Well, I know one thing for sure,” she said getting into the car.  “I definitely played better this game.  My first game, I did not know what the heck I was doing!”  I also survived her game.  I am not going to lie, it was not easy.  I dearly paid for it later with needing pain meds.  Sitting for 2 hours in bleachers definitely took its toll.

My son had his wrestling match Saturday.  I was tired from the week, but I was determined to go.  Because of an ankle injury on the 3^rd practice, he had seen matches between his own team mates, but was able to participate very little.  Saturday he was the very first wrestler in the very first match.  I was so nervous for him.  He had never even been to a tournament before, and as mentioned earlier, had not had much practice.  His opponent flipped him up in the air as if he weighed nothing and immediately pinned him.  This happened 4 consecutive times, making for a very short match.  He had 3 more matches to go.  His elbow was injured the very first flip into the air, but he too was stubborn.  He was determined to finish the other 3.  I was beginning to see a family trend here.   The next 2 matches he got better, but was equally beaten.   My pain and fatigue was starting, and we had to leave before his last match.  Darn if he did not do well.  He still lost, but by only 1 point!  He was pretty sore after his tournament.   When asked if he still liked wrestling, was he glad he joined the team, he replied, “Of course!  I really like it.” 

 

That night, my son was on one couch with ice bags and ace wraps, and I was on the other; I think moaning more than he was.  I felt like I had been the one flipped in the air 4 consecutive times.  I could barely move my arms and legs.  They would freeze when I would try to move.  My brain knew I want them to move, but the connection was slow, and they wouldn’t budge. They eventually did, but it was a much delayed response.  The electrical currents I sometimes feel coursing through my body were running rampant.  It was so worth it though. 

I had a lot of physical challenges this week that definitely challenged my pain level, but I also had emotional challenges as well.  My grandmother, of almost 100 years of age, passed away.  A widow at a very early age, she raised 2 children on a school teacher’s salary.   She was very active in Habitat for Humanity, a deaconess in the United Methodist church, taught Sunday School for years, taught prisoners to read, won multiple awards for her contributions to humanity, and was very politically active.  She could win any political argument hands down because of her stubbornness.   Nothing and no one could make her back down from her beliefs, not even her own family.  She taught me great lessons, give often; and live generously and graciously towards others. 

I contemplated long and hard about attending her funeral.  I knew I could not travel for 8 hours, attend a funeral, family activities, and then return home.  I wanted to attend so badly, but my body just was not well enough yet.   I knew a trip like that could tremendously set me back.  I hate that I could not say my goodbyes to her.  She loved me, made me clothes, fed me during college (including many of my friends), and even let me live with her for a short while.  How could I not go and say goodbye to her.  I still am wrestling with my decision.  

As I write and review my past week, I realize exactly where I and my children get our stubbornness- my grandmother.  However, it is not stubbornness after all.  It is perseverance.   She persevered through multiple hardships in her life to live 99 wonderful years.  My daughter has persevered through epilepsy to now play basketball, get knocked down multiple times, and continue playing despite exhaustion.  My son perseveres through an ankle and elbow injury, to only be completely beaten in his wrestling matches.  Yet, he gets back up and does it again.   I am determined to persevere through this damage which Levaquin has left me.  What a great legacy to leave your family.  My grandmother’s perseverance resonates through all of us.
_____________________________________________________________

Perseverance- 

1.  steady persistence in a course of action, a purpose, a state, etc., esp. in spite of difficulties, obstacles, or discouragement.

2.  (Theology) . continuance in a state of grace to the end, leading to eternal salvation.

You Gonna Use That Potty Spot?

I have gotten what a lot of people think they covet- a handicapped parking tag, or as my son used to say, “The Potty Spot”.  When he was just a toddler he went with me to the hospital where I worked.  There were handicapped parking spaces everywhere.  He always was, and still is, an inquisitive boy, and he asked hundreds of questions whenever we went anywhere.  I could see the wheels turning in that little brain of his.  He was staring intently at the handicapped parking places.  “Why are all those people going potty?”  “What?”  I responded, very confused.  “The people on those signs.  Why are they all going potty?”  Oh, now I understood.   Yes, the handicapped symbol does look like someone going potty.  Every time I see that symbol I think of that day.  Thus, I now have the desirable “Potty Spot.

It is a temporary tag and has an expiration date of March 31, 2011.  I feel in a way it is an expiration date for me.  It makes me feel stressed.   I have until the end of March to be back to normal.  Now, I know that is really not the case.  I know it can be renewed, but somewhere inside of me that is how I feel.  It has already been 4 months and in 4 more months I should be completely better.   Right?  Hmmm, not so sure about that.  In fact after posting my blog about staying positive, I have had one of my worst weeks recently both painfully and emotionally.  Instead of the now normal blowtorch feeling, I have felt I have been followed by a fire breathing dragon.   This has made me especially snippy and crabby.   I really need to listen to my own words of advice.   I have gone back and read my post many times over the past week to remember to stay optimistic.  

I requested my parking sticker after attending one of my son’s cross country race events.  There was no parking close by and I had to walk quite a ways to get there.  It totally exhausted me.  I felt like my legs had turned into rubber, like Stretch Armstrong.   They throbbed with pain, and were buckling from the fatigue.  To avoid that from happening again, my husband filled out an application for me.  I have had it for a few weeks, but I can’t bring myself to use it.  For years I, like many others I am sure, have thought I would love to park in one of those longed for spots.  No longer would I have to park a mile away from a super store’s entrance.     I would have that prime piece of real estate right outside the door.  Each time I have planned to use it though, for some unknown reason, the parking space right next to the handicapped parking has been available.  I mean EVERY time, without fail.  I choose the one equally close, in case someone who needs it more will have it still available.  But even if it was my only choice, I feel quite different about using it from what I thought I would.   I don’t want to use it; I don’t want to have a reason to be there.  If any of you are “Losties”, you may remember an episode where John Locke refuses to park his handicapped van in a designated accessible spot.  His response, “I don't have to park there! I can park anywhere I want!”  I think in a way that is how I feel.  No one can make me park there! 

 Luckily I have not had to use it yet; however, this week has reminded me that I am far from 100%.  I need to conserve my energy so I can do what errand I am there for.  My legs just won’t let me travel the distance I once did with them.  I definitely still need that as an option for me.   I am thankful that I am well enough to take the next spot when it is available.  Some people affected by Fluoroquinolones are not that fortunate and need those spaces so they can access their wheelchairs.  I am grateful I am not one of those people.   I am hoping that when the March expiration comes around I will not have to renew my parking tag.  After all, I really don’t want to have to go potty there. 

Staying Positive

I have had people ask me, “How are you staying so positive through all of this?  Aren’t you angry?” On the inside I chuckle to myself.  They have caught me on a good day.    Are you kidding?  Of course I am!  But I must keep moving forward and try to focus on the positive, or all of the hopelessness that I know is chasing right behind me will soon catch up.  I cannot let that happen.    Now don’t get me wrong.  I am no Pollyanna!  I certainly have my moments when the negativity of it all seems to loom over me.  My husband can attest to that.  Sometimes the whole task of it all seems very daunting.    


The loss of my health has been a grieving process.  It has been for my husband, daughter, and son too.  An illness of this magnitude affects the whole family.   However, I have found we all deal with it very differently.  My husband wants to “fix” it all.   My son just chooses to pretend it is not there.   My daughter, who has been on the other side, wants to mother and make it all better.   I seem to dive in and research everything I can get my hands on.  I become obsessed.

I have gone through all the typical stages of dealing with any loss- denial, anger, bargaining, depression, acceptance, and even forgiveness.   However, my road through these stages has been different for my illness than when I experienced it with my daughter’s diagnosis of Epilepsy.  With her I was in such shock, I could not believe this was happening.  It just came from nowhere.   I went into a deep depression; it was hard on our marriage.  My husband and I viewed treatment options very differently.   I bargained, prayed, and begged God to make her better.  I was angry that so much of her life was being taken away from her.  It was not fair! 


My illness also has come upon us suddenly, but I guess because it is me, I feel all of these stages differently: 


Denial- This did not last long for me.  I knew that with how my body was feeling after receiving Levaquin that this was not going away.  There was no way having a feeling of being burned by acid from the inside out for 8 days, that this was not doing significant damage to my body.  I could feel it.  I knew my life was changing.  My husband realized this too.  He saw the agony I was in.  There was not denying it.   We hoped that perhaps at worst this would last a few weeks.  However, it kept getting worse.  Nerve conduction tests confirmed peripheral neuropathy.  I knew this was staying around.   Trying to stay positive—At least we received a diagnosis quickly, and did not spend months in the unknown. 

Anger- It made me angry as I laid there on the couch, feeling the destruction going on in my body.   There was nothing I could do to stop it.  I was angry that a war was raging inside of my body and nothing was being done.  Doctors did not know what to do other than give me pain medication. Talk about feeling helpless.  I could literally feel my body being burned away.  I was angry at myself for not remembering the name of the medication I was allergic to.  I kept apologizing to my husband for doing this to myself and to our family.   I was so angry at the nurse that injected it without telling me the name of the medication.   I was mad at the doctor, and I was even more pissed at the FDA and the drug company!  How could they let something like this occur!  Trying to stay positive—I have been using this anger to help educate others. 


Bargaining-   I went through this stage for quite a while with my daughter.  I bargained with God all the time to make her better.  I think it is harder when you see your children suffer.  That just should not happen.   With me though, I have had a hard time praying for myself.  I have not prayed to be healed.  I have come to a realization that this is how things are now.  I have to make the best of it and move forward.  Instead of thinking “Why me?” I think “Why not me?”   I am no different from anyone else.  We are all susceptible to illness, disease, human error.   Perhaps I have learned that bargaining doesn’t work.  Staying positive- I pray that I can learn to live with the situation and make the best of it.   


 Depression/Grief- I grieve for my “old body” and the things I took for granted.  I get sad when I think I may have lost the future that has been in my mind’s eye.  My husband loves to travel.  This is a true passion for him.  He looks forward every year to plan our yearly trips.  He researches where we are going, like I research our family’s medical problems.   Because of his frequent work travels, we are fortunate enough to be able to travel as a family because of all the frequent flyer miles and hotel points.    We had a trip planned for New York for Thanksgiving to see the Macy’s Parade, a trip we scheduled over a year ago.  My husband cancelled our reservations just last week.   There is no way I can manage travel and then the crowds of New York.   We are now talking about having to cancel our summer trip to the Grand Canyon.  We always go on family vacations and I realize my illness will more than likely interfere with this now.   We have talked for years how we want to travel after his retirement.  Now we are not so sure that will be possible the way we have envisioned it for years.   Trying to stay positive—Perhaps I am misjudging the progression of this injury to my nervous system.  I am trying to be hopeful that we once again will be able to take trips like we used to. 


Acceptance and Forgiveness- I have accepted the fact that this Peripheral Neuropathy is not going away, at least not anytime soon.  There is no cure.   It is a sobering fact.  I have forgiven the doctors that have done this to me.  I realize now it was not there intention to harm me.  However, I am still struggling in this area.  I have a difficult time whenever I pass by that facility.   I will tell you I will not be returning there.  Not that the doctors were not professional, but I still have too many emotions connected with being treated there.  I just can’t enter that building.   


Being constructive- I am adding a new phase of dealing with illness.  After accepting my loss, or new way of life, it is time to be constructive. My illness is allowing me to use the gift of writing, which I may otherwise not ever have used, with this blog.  There is still a war raging inside of my body, but I have chosen to embrace the enemy.   I am using my experience to help others. I most definitely have not forgotten the fact that the medical community and the FDA don’t acknowledge the magnitude of this happening to people.  I am prepared to fight the fight just as I did with my daughter.  I have accepted the loss, but I am not going to bear it quietly.  I am trying to use what anger I have left constructively.   


Staying Positive-   I am trying my best to cycle through all of these phases as optimistically as I can. I give myself daily pep talks to keep a positive attitude.   I remind myself that if I was able to do a task before, I can certainly do it again.  I try not to compare this “new me” to the “old me” prior to July 17^th.  Instead, I try to see how far I have come, and how much more I can do since being injured. I am learning to accept what I can and cannot do.  If I am not feeling well, it is o.k. to take the day off and rest.   If I am in tremendous pain, I do cry, but I pick myself back up.   Perhaps tomorrow will be a better and more productive day.  I have to pace myself.  My body needs to heal.   I have found I need to surround myself with positive thoughts.  I have found some very supportive online groups.   It really helps finding others that are going through the same thing.   I try to avoid those that focus on the negative.  I post daily motivating quotes on my facebook page, "Life in the Rabbit Hole", not just for everyone else, but mainly for myself to remember to keep a positive attitude. 


I may not be able to control my physical health, but I can control how I react to having a chronic illness.  I don’t know if I will get better or worse, but I can make peace of where I am right now.  I can accept what life has given me.  I can have hope.  This does not mean giving into it.  Quite the opposite, I feel it helps me move forward, to take charge, and stop continuing to be a victim.  I refuse to let this ruin my life.   I need to focus on being proactive, focus on what I can do, focus on my accomplishments, focus on getting well, focus on staying positive.

I've Gotta Crow!

It is time for me to step out of my comfort zone, or as the famous song from the musical Peter Pan says, “I’ve Gotta Crow!”  It is time for me to spread my wings and fly.  I have pretty much been a recluse in my house since July, not venturing out much on my own.  Some of the reason is that pain still controls my life.  It is better than it was initially, but it is still there none the less.  Anxiousness is another big factor.  What if I get somewhere by myself and the pain starts?  What if it gets so bad, I can’t drive myself back home?  These questions can also make me feel confined.

My first attempt to go shopping on my own was a failure.  I got dressed (which took me ½ the day), got in the car, put the key in the ignition, and then just sat there.  I played out the scenario in my head.  Did I have the energy to walk around the store, pick out clothes, try them on, and then after all of that stand in line to check out?  NO!  I didn’t have any energy left.  I was having too much pain.  Back into the house I went.  

I really needed to listen to my body.  It knew what it was talking about.  That first day it was trying to tell me my attempts were just too much.  My second effort was much more successful.   I went on a much better day for me.  I was even able to find a few clothes to get me out of those sweats I have been living in.  I think my family will be very grateful they will no longer have to see those!  Well, o.k., they probably will still see them, but hopefully not every day!  But more than finding clothes, it was a turning point for me.  It made me realize, I can do things on my own again.  It may not be as easy or effortless like it was before, but I can do it.  

Another milestone was reached this past weekend.  I haven’t done anything socially in a very long time, for all of the same reasons listed above.  My husband and I were invited to a Halloween party on Saturday.  Thank goodness it was not a costume party.  However, the party was a scavenger hunt.  It required 2 hours of being in the car with our “team” to jump out and take pictures of the items on the list.  We then were to meet back at the house for dinner.  Oh no!  Being in the car was one of the worst things for me.  Being in the same position for so long was just hard on my body.  Also, it would require me being out past 8:00 p.m., my new bedtime for the past 4 months.  We debated on what to do.  We really wanted to go, but could I handle it.  We could not go to the scavenger hunt and then just arrive for dinner.  But then, we would miss out on all the fun, all the dinner conversation would be about the scavenger hunt.  I decided to bite the bullet and do the whole thing.  I probably would not make it to church on Sunday, but I wanted to have fun.  I have not had real fun in what seems like forever.  

Before going I was having just about the worst pain I have had all week.  My arms were burning, my legs were cramping, and it even hurt to wear clothes.  Now that would be a problem!  After multiple changes I finally found clothing, socks, and most importantly shoes that were tolerable.  I took an extra dose of medication, but I was still in so much pain.  I kept debating on whether to go, even then.  I was not going to let the pain stop me.   I hadn’t been out in months.  I was just about in tears on the way there, hoping the medication would hurry up and kick in so I would have some relief.   We arrived, and what do you know!  I was feeling somewhat better.  We chose our teams and we were on our way.  I wasn’t the most contributory team member, but I was there.  I even was able to jump out for a few pictures.  O.k. - hobble out was more like it.  We returned for dinner, visited, and then said our good-byes.  I did it!  I made it though the evening.   All the worry of being in the car, sitting at the dinner table for too long, being able to maintain my strength while I was there were legitimate concerns, but I proved I can fight through them.  

I was right about one thing; I couldn’t make it to church the next morning.  My pain came on strong when I got home and I could not sleep.  My son kept me company by staying up and watching a movie with me.  I am sure he did not mind the sacrifice.   I have learned a valuable thing in all of this; I need to set goals for myself and stick to them.  I need to step out of my boundaries and spread my wings, crow a little.  I could possibly find out that I can enjoy myself, despite the pain.

The Rabbit Hole is on Facebook.  You can join “Life in the Rabbit Hole” by clicking the Facebook badge to the right, and the clicking “like”.  Thanks for reading!

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.)