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   Throwing away out-of-date food, getting my spices in alphabetical order (again), and putting everything back in its proper place completely wiped my arms out.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!

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.