Through the Looking Glass

“It would be so nice if something made sense for a change”- Alice.

As I was going to bed one night, at 8:30 no less, my daughter came in to tuck ME in.  How odd it is that the role between us has changed so dramatically.  It is like the “Looking Glass”, as if I am inside this reversed universe.    My daughter has Epilepsy, and for about 3 years she had a really rough time.  She is doing much better now, thanks to finally finding the right doctor that would take his time and listen, and many prayers.  During some of this time, especially between the ages of 8 and 9, she needed lots of extra help.  She could no longer attend school; she could barely dress herself, and could no longer do the normal things kids her age did, because of the constant seizures. We were inseparable, because she could not be left unattended for long periods of time.  She became more socially isolated, because she had a fear to leave me.   I was always asking her, “Are you o.k.?”    It seemed that was my continuous question for her.   I had to smile one day when I realized she is now always asking me that very same question.  She is now helping me with all the things I find hard to do. She has been the mother in our relationship since July 17^th.

Our relationship is not the only thing that seems out of place, or odd.  The whole world does.  I feel that the rest of July, August, and now September, has gone on without me.  In my mind, it is still July.  It as if I pressed the fast forward button, and just skipped right over it.    I know I experienced those months….I have all the doctor receipts to prove it!  But, it has been like I have been caught up in a whirlwind of doctor visits and testing. 

 I am starting to have periods of normalcy, where I get a reprieve from the Looking Glass’ alternate world.  Last night I was able to prepare dinner for my family.  My whole body pain is starting to diminish, although the pain in my right leg will not leave because of the damage to the nerve.  It is still there, and will possibly never go away, if the damage is permanent.  I asked the doctor, how he knows if my right leg will get better or not.  His response, “Well, we give it 2 years, and if it is not better by then, it is permanent.”  Hmmm, that is very scientific!  In other words, only time will tell.

The pain is getting better, but the weakness continues to progress, especially in my legs.   I am trying to stretch them daily now because of the increased spasticity in my extensor muscles.  This causes everything in my lower body to be off balance.  In other words, my muscles in the back of my legs are constantly trying to contract, when I need them to lengthen.  People may not see it, but I definitely feel it.  The muscles quiver in protest when I try to force them to go the opposite way of what they want to do themselves.  It is like forcing a stubborn toddler to do something he does not want to do.  My muscles have a mind of their own.

I am ready to leave this odd world.   I want to take control and try to force my body to start turning around and get better.  I have always been the CEO of our family; my husband knows this of course.   It has been an unspoken knowledge that he holds the VP spot!   I have had to temporarily relinquish my title to him, but one day, I will get out of this mixed up world in the “Looking Glass” and reclaim my title!


Thanks for all of the comments left on my blog.  I can't respond to all of them, but I wanted to let you know that I do read them, and appreciate them.

The Mad Hatter

"If I had a world of my own, everything would be nonsense. Nothing would be what it is, because everything would be what it isn't. And contrary wise, what is, it wouldn't be. And what it wouldn't be, it would. You see?”
— the Mad Hatter

I feel like I met with the Mad Hatter the past two days, not because I think he is mad, he actually appears quite intelligent, but he talks in circles. Don’t get me wrong, I really like him.   I met with my new neurologist, and he is the kind of doc which talks out his theories as he works them out in his head. He is more familiar with rare disorders, and has helped others that have had neurological problems from medication reactions.   He goes into long explanations of why he is heading in certain directions with testing, to hopefully diagnose me.  

 "'Speak English!' said the Eaglet. ‘I don't know the meaning of half those long words, and I don't believe you do either!'"
- Lewis Carroll, Alice in Wonderland, Ch. 3

 I think anyone who is trying to pinpoint a diagnosis probably can understand.  I left feeling discouraged and broken.  My reflexes are diminished in both my upper and lower body.  I discovered I have muscle atrophy in my right foot and leg.  I can not move my toes!  How come I never noticed that?!?!  I notice I am not walking the same, but not that!   Even my ankle does not want to move through its full range of motion.  It is discouraging to be constantly pointed out that you are broken.  You no longer function as God intended.  You are not the same!

  

Today he scheduled another nerve conduction and EMG test.  I got the results immediately, which I liked.  The last time I had to wait two weeks.  Today I learned my main nerve in my right leg (peroneal nerve) is damaged from the knee down.  He also discovered that my EMG is abnormal.  It did not appear this way a month ago.  In other words, not only is the nerve not working correctly, but neither are the muscles.  In addition, the muscles in the leg without nerve damage, are not working correctly.  He also ruled out MMN, the most recent diagnosis I had been given.   All of this just leads to more testing.....more blood work, and ANOTHER MRI.

I feel I am just running in circles. We were first told I could possibly have Myasthenia Gravis, then not. Then MMN, then not.  Now Myathenia Gravis is on the table again for a possible diagnosis, or MS.   Who knows!   He also said I may not ever get a “name" for what is going on.   It could be ALL of my symptoms are because of the adverse reaction to Levaquin.  He is trying to make sure there is not something else going on as well.   It is odd to wish for a disorder, but you see, if it is all because of Levaquin, there is no treatment.  A diagnosis may give me treatment options. 

The Mad Hatter enjoys frustrating Alice.  I don’t think my doctor’s intentions are to do that, but I am even more frustrated than before.  I no longer have a diagnosis; I may never get one, and may never be able to get treatments.  All I have to say is- stay away from fluoroquinolones!  Then, possibly, you won’t have to visit the Mad Hatter.


(Please see the link to the right to sign a petition for the FDA to include a "black box" warning that Fluoroquinolone antibiotics can cause Central Nervous System disorders.)

The Cheshire Cat

“Well! I’ve often seen a cat without a grin,” thought Alice; “but a grin without a cat! It’s the most curious thing I ever saw in all my life!” (Lewis Carroll, “Alice’s Adventures in Wonderland”, 58)

This week I have joined 226 other bloggers on "Bloggers Unite"”, for Invisible Illness Awareness Week..  Nearly 1 in 2 people in the US have a chronic illness and about 96% of it is invisible.

Invisible Illness is a curious thing.  It is much like the Cheshire Cat in Alice in Wonderland.  Most of the time you see the grin, but not what is behind it. That smile can look absolutely perfect, yet it can hide a great deal of pain.  I can tell before I even get out of bed what my day is going to be like.  This morning, my right arm did not want to move.  Uh oh, it’s going to be one of those days.  I hobble to the bathroom, and then try to make it down the stairs without my 3 dogs knocking me down.  Where’s that cane?  Darn! I left it down stairs last night.  My right foot is the worst.  It screams with pain—mostly it feels like it is being burned by a blow torch, other times it feels like acid is burning me inside.  The weirdest feeling is sometimes it feels wet.  I have to look down to make sure I haven’t spilled anything on it.  It is very strange.   As Alice would say, it is “Curiouser and curiouser!”    The pain is a little more bearable during the day, but even so, it never leaves.  It is always there, just like the Cheshire Cat.  The nights are the worst.  The pain consumes my whole body.  I spend most of my time in the bath to help relieve the muscle pain, or in the bed.  I have to take pain meds most night.  Sometimes it works, and other times it just barely takes the edge off.  Last night was one of those sleepless nights.

However, I am just as guilty as anyone not believing or understanding the pain of others.    As a therapist, I knew my patients were in pain, and I could try to sympathize with them, but I know now I never really truly understood.  I wish I could go back in time and explain.  Even in my own family, my grandmother suffered from chronic pain.  Now my father does.  I have looked at people who park in handicapped parking, yet walk into the store.  I usually think to myself, “Why is he parking there?  He can walk fine.”  Now I realize maybe that person is in great pain, and will have difficulty even maneuvering the store.   My husband keeps encouraging me to get a temporary parking sticker.  I am putting it off, because I know I will get those looks now.  However one day, as I was trying to walk into a store, a group of senior citizens passed me crossing the parking lot, because my legs will no longer let me walk fast.  It completely wears me out to go into a super size store.  I now have an entirely different perspective of what these people in my life have gone through.  Unfortunately, I have joined their group.  Like Alice, I want to protest.  I did not sign up for this!

"But I don't want to go among mad people," Alice remarked.

"Oh you can't help that," said the Cat: "we're all mad here. I'm mad, you're mad."

"How do you know I'm mad?" said Alice.

"You must be," said the Cat, "or you wouldn't have come here."

So, like Alice I am here among the “mad” people or in my case the “chronic pain” people.  We often hide our pain behind our smiles.  It is a double edge sword.  We want validation of our pain, yet we want to hide it too. We may not look “sick”, because we aren’t.  It is a very strange concept to understand.  We still want to get dressed and look our best.  Invisible Illness does not discriminate.  It can affect any age, race or gender, or at any inopportune time.  Just because we may "look our best", it does not mean our illness is still not there, lurking, like the Cheshire Cat. 

One Singular Sensation

I got a gift today in the mail.  I’m trying to decide what to think about it.  I usually LOVE getting those brown boxes with “Amazon” written on the side of it.  Hhhhmmmmm…..I’m not liking this one so much.  You see, there is something in that box I know I need, but am not willing to accept.  I tried to order it myself, several times, but I could not bring myself to hit that “submit order” button.  One night when I was at my worst, my husband “submitted” it for me.  So, now it is here.  I take it out of the box, and shove it to the side.  Not ready yet.  What will others think of it when they see it?  How will I react when they see I have it?  I won’t need it all of the time, it is collapsible, so that I can hide it when it is not in use.    I have a hard time even stating here what it is.  Ready for it, ready for it..…….a cane!  Yes, my dear, sweet husband hit the submit button for a cane!

I have been having an increase in loss of balance, even around the house.  I know it is just a matter of time before I fall.  The last thing I need right now!  I don’t feel I need it all the time, but when the pain is at its worse, and the muscle fatigue makes it feel like I am moving through mud, I know I need its support.  We ordered one that can fold up, so I can have it “on hand” if my weakness suddenly strikes me.  It does this sometimes, like a brick wall, out of nowhere---suddenly my legs are so weak, my knees buckle.  My husband picked it out.  That was quite a dilemma---do I go for a bold “fun” looking one, to state “here it is, get over it”?  Or do I go with one that is black and hopefully will not scream for attention.  He decided to go with the black with a lovely pearl handle.  

I think about the last time I used a cane---high school show choir.   Oh, but there was one other time, my sorority rush week.  We had canes and sang tunes from A Chorus Line.  Why are canes used for show choirs?  I guess maybe the canes with the white gloved “jazz hands” are really cool when you are up there dancing and singing for others.  But, this cane seems quite different.  No “jazz hands”, not so much fun.   Well, maybe if I sing a little tune in my head when I walk with it. I might even buy some white gloves. That could help, I guess.  Won’t you join me?

 One singular sensation
Every little step she takes.
One thrilling combination
Every move that she makes.
One smile and suddenly nobody else will do;
You know you'll never be lonely with you know who…….

____________________________________________

 Have a look around my blog---I have added some pages, and changed the content of others

Thanks for singing along. :-)

The Pool of Tears

Sometimes I feel like Alice in Alice in Wonderland when she discovers her body and world around her have changed after falling down the rabbit hole. She becomes unhappy and cries.  Her tears flood the hallway, and after once again shrinking, she gets caught in the sea of salty tears. 

“‘You ought to be ashamed of yourself,’ said Alice, ‘a great girl like

you,’ (she might well say this), ‘to go on crying in this way! Stop this
moment, I tell you!’ But she went on all the same, shedding gallons of
tears, until there was a large pool all round her, about four inches
deep and reaching half down the hall.”

“‘I wish I hadn’t cried so much!’ said Alice, as she swam about, trying
to find her way out. ‘I shall be punished for it now, I suppose, by
being drowned in my own tears! That WILL be a queer thing, to be sure!
However, everything is queer to-day.’”   ~Lewis Carroll

One of the many side effects of Levaquin is, yes, uncontrollable crying.  For weeks, I would not even take phone calls, because I literally could not control the tears.  It is hard to explain, and probably only those who have experienced it can even begin to understand. My family would sometimes resort to laughter, because they did not know any other way to respond.  I did not fault them, because if I had not been crying, I would have been laughing too.  It was ridiculous the amount of tears being shed.  I think I could have filled Alice’s hallway, plus some.   Well, now I no longer have the uncontrolled crying, but I still have frequent tears.  Usually, they are brought on by the intense burning pain.  However, sometimes it is out of pure frustration.  Frustration, that I can’t do everyday things.  Frustration, that my hair is coming out in clumps every time I wash it.  Frustration, that doctors really don’t know how to help those with such an adverse reaction from Levaquin! Frustration of how are we going to get through this??

 I do my best to step back and try to look at it from a different perspective.  There are so many people I know who have gotten through much worse, and have more than survived and have even prevailed.  I am not going to lie to myself.  It is a long road ahead of me.  I wish I could magically snap my fingers and everything will be o.k.  I have even woken some mornings and thought to myself, “I am going to fake ‘well’.  Some people fake being sick, so today, I am going to fake being well”.  It hasn’t worked out too great for me.  Usually, I am quickly reminded that I really am different now.  I will try faking well again tomorrow.

However, I am grateful for the blessing I do have.    I know that one day we will look back on this time, and realize we did survive, and God was right there with us.  I am fortunate to have a loving family and a church that steps in to help when I need them.  We have had meals brought to us, friends holding my hand during infusions, visitors and phone calls giving their support, transportation for my kids, and cards in the mail.  All of this reminds me that I am not going through this alone.   God is sending his support and love through the friends and family we know.   Because of this, I know one day those salty tears, will be tears of joy.

Dad Is Great....Feeds Us Chocolate Cake!

You know you are not feeling well when..... Dad feeds the kids chocolate cake for breakfast, and that seems totally acceptable to you.  One morning, as the kids were gladly inhaling the chocolate cake brought to us by a friend, the Bill Cosby skit popped into my head.  At least, I got a smile from the irony of it all.  Too exhausted and weak to provide anything better, I fell for Bill's rationale----at least it has eggs and milk.  They are healthy, right!?!?


Dad has had to “chip in” on many areas since this lovely “Levaquin” illness has hit my family.  Yes, it has hit my family!  Everyone’s role has changed.  No longer do we have the typical parent/kid roles.  I guess in some ways it has opened our eyes that everyone needs to know how to do everything.  My 15 year-old son has had to make many a meal.  The shock of it came easier to him when I explained this could be a good dating tool for him when he goes off to college.  My daughter did not fall for that logic when teaching her the fundamentals of laundry.  Oh well, can’t win them all.  But, it has been Dad that has been hit with the brunt of it all.  He now has to do grocery shopping, meal prep, yard work, household chores, and chauffer service, all of which I did while he was usually traveling with work.  Not to mention this has all come right in the middle of a job change for him.  Illness makes no discriminations.  It can affect anyone at any inopportune time.


I am unable to do the things listed above thanks to that one dose of Levaquin.  In some cases, I may be able to start them, but unable to finish because my muscles just simply give out.  Even typing this blog, I have to save and go back to finish because my hands fatigue.  Driving is near impossible.  I can drive for very short distances, but that is it.  Soon the pain and fatigue take over, probably not making it the safest for me to drive.  Oh, the things I am learning from this now chronic, invisible illness.  Some of these----Dust is perfectly o.k., it is a protective covering for your furniture.  The dog hair all over the carpet, just adds more color to the room.  Cereal is totally acceptable for dinner.  Weeds in the yard, isn't that how nature intended it?  However, my neighbors may not agree with that logic.  The towels not folded how I would fold them....gritting my teeth...will just have to do. At least my kids are not wearing pink socks, that is a plus.  It is very frustrating to not be able to do the things that I complained so much about doing before.  Oh, to be able to spend my whole day doing mundane housework, would now be a pleasure. 


I am very thankful though, that God has given me such a supportive family that is willing to help out with little complaint.  I can’t say the same for me.  I think my complaining these last few months has been quite high. Sorry hon!   Getting back to Bill Cosby, one thing he certainly did get right----Yes, Dad is Great!!
(Just so you know, I sneaked a bite of that cake too!) :-)

Brought to You by Levaquin

On July 17, 2010, I entered Alice's rabbit hole~Well, pushed is more like it.  I am still falling down that hole, and don't feel I have hit bottom yet.  I have entered a world I don't recognize.  Even my own body is different.  Nothing is the same, I have to learn about the all new, not necessarily better, me.  My body no longer reacts to things the same way.  I am losing hair, my body has gained, lost, gained, and then lost weight again from the tailspin it is in now.  I sometimes walk as if I am drunk.  My body protests with weakness and pain if I do even the slightest activity.  This is not me!  I used to work out daily, I painted the whole inside of my house by myself.  I used to walk my dogs, work in my garden beds!  What do you mean my body is exhausted just by getting dressed every day?!?  What happened!?! Snap out of it!!   LEVAQUIN happened! Just like when Alice drank from that ever famous bottle that said "drink me", and changed her body and her surroundings, that is how I feel Levaquin has affected me.  I am now trapped in this unfamiliar world, that I now have to make familiar.   

On July 17, 2010, I woke with a case of food poisoning which was relentless.  My husband took me to an immediate care emergency clinic, where I was given 3 bags of IV fluids because I was so dehydrated.  Since my WBC count was extremely high, the physician decided I also needed an IV antibiotic, "out of precaution".  I was given the medication Levaquin through the IV and had an immediate adverse reaction. I began experiencing extreme pain, in my hips, back, and head.  By the time it was over, I was extremely weak, and felt as if I was moving through thick mud or concrete.   I was then given predinosone through the IV to help counteract the reaction from Levaquin, but was made worse.  For eight days, I felt as if acid was coursing through my body.

Over the past two months, my symptoms have increased.  I have been having severe joint pain in every joint, muscle weakness and neuropathic pain in my feet.  After multiple trips to the neurologist, he saw I was getting worse, instead of better.  He referred me to a Rheumatologist to help rule out other disorders.  I have been given a cervical MRI, multiple blood tests, nerve conduction/EMG test, full body scan.  All came back negative, except for one.  The nerve conduction test showed that I am having demyelinization of the peripheral nerves in my body.  I have been diagnosed, temporarily with MMN (multi-focal motor neuropathy), an autoimmune disease that mimics ALS. Temporary, because neurological disorders are hard to diagnose, and my symptoms could change over time, which could change the diagnosis.   It is very rare, and there is little literature on how to treat it.  This past weekend, I was given 3 solu-medrol infusions through outpatient.  It was a chance I knew I was taking.  No one could guarantee it would help, or possibly make things worse.  I was at a cross roads, where a decision I did not want to make, needed to be made.  I took the chance, and unfortunately it did what we did not want to happen.  It made me worse.

My neurologist has now referred me to another neurologist that is more familiar with rare disorders.  I have mixed emotions about this, because in this short time, I have become attached to my current doctor.  I really like him, and he listens.  However, he is also wise enough to know that my condition goes further than what he is equipped to understand.  Another great aspect I like in him.  

One of the biggest questions is did Levaquin start this, or was it just a catalyst to something already there.  Either way, Levaquin IS the reason for my current condition.  My first symptoms actually started in my hands about a year ago, with muscle twitching and weakness.  I thought maybe I was just using the computer too much, so I backed off some from using it.   Then the symptoms spread, and I was feeling muscle twitching throughout my whole body.  I started to notice I was getting weaker with my workouts, instead of stronger, and was able to do less and less. I had just complained to my primary physician, that something was wrong.  I was feeling really tired, getting weaker, and had these annoying muscle twitches everywhere!  She had just referred me to the neurologist when this happened.  Ironically, I was given the Levaquin in between the referral and my first neuro appointment.  

With that said, I have to back up to May, 2009.  I was also given Levaquin then for a skin staph infection.  I had adverse reactions then too, but they seemed really mild compared to now. I complained of extreme fatigue, joint pain, a "fluish" feeling.   That is about the time these general "annoying" symptoms started.  Levaquin is known to cause Central and Peripheral Nervous System disorders in less than 1% of the people who take it.  So we are back to the question......Did my first reaction to Levaquin slowly start something "cooking" in my nervous system, causing the first symptoms, and the second reaction was a catalyst?  Or was something there already, and the Levaquin just made it worse.  My current neuro suspects everything is related to the Levaquin.  

Either way, I am where I am regardless.  I am still falling down that rabbit hole, hoping to hit the bottom soon, so that I can find my way back home.