Mito or Not Mito: That Is the Question

Mitochondrial Dysfunction* or not, that seems to be the common question regarding my health.   I now have had THREE doctors say they suspect I have mitochondrial dysfunction.    Now proving it is a whole different matter, and a series of events I am not sure I want to undertake at this time in my life. 

Here is the problem with testing for mitochondrial damage, or at least how it was explained to me.  It is not a run-of-the-mill test. Only a couple of labs in the US know how to test for it, and it can costs from thousands to tens of thousands of dollars.  Often insurance will "pre-approve" it, only to later not cover it.  I had my follow up visit with my neurologist this week and we had an hour and a half discussion weighing the pros and cons of having this testing done. A muscle biopsy has been suggested by two neurologist and the most recent, my rheumatologist.   However, that will entail a 6 inch incision in my bicep and/or thigh.   It would only confirm whether I have mito dysfunction or not.  There is no cure for it.   The other option is to have both my mother and me undergo testing to look at the mitochondrial DNA.   A person’s mitochondrial DNA only comes from their mother, and by comparing the two, they can tell if there has been damage.  She has Parkinson’s, and I don't want her to have to endure a lot of testing.   Although she said she would do it.   But again, very few labs are equipped for this, and it would just confirm it or not; still no cure.  It would only give me an answer on whether I will get better or get worse.  I am not sure I want that answer.  Right now I have hope for getting better.  I am not ready to find out differently.  So for now, I am not doing the testing.  If in a year or two, I am still having muscle fatigue that interferes with daily life, then I will consider it again.  If they are closer to a cure, it may also be worth it.   Here is a website about mitochondrial dysfunction.  Their recommendations for treatment: rest, energy conservation, good nutrition, supplements.....that is what I am doing now. http://www.mitoaction.org/

The pain in my right foot continues to increase.  It is now suspected I have Tarsal Tunnel Syndrome (like carpal tunnel, but in the foot).  At first I was excited by this news…maybe I have better hope of getting treatment.  My foot causes me the most amount of pain and also interferes with my independence the most.  However, I am finding that this condition is rare. Yay me! (dripping in sarcasm).   However, it is a common occurrence with Levaquin adverse reactions.  It does not always respond well to treatments, including surgery. My neuro has started steroid injections (I know, I know ~ no steroid for floxies!), and is planning on a repeat nerve conduction/EMG in a month to test specifically for this condition.  He is waiting the month to see if the injection and an increase in my Gabapentin will help.  However, I can tell already it is not helping.  After that, it sounds like I will be getting yet another doctor referral for this condition.

This past week has been a roller coaster of emotions for me.  I now am hearing from a third doctor they suspect irreversible mitochondrial damage, I have Tarsal Tunnel Syndrome, and I received a PERMANENT handicapped parking tag.  You always think you want one of these, until you HAVE to have one.  My husband, with stubborn protests from me, is also looking into hand controls for the car.  Not a proud moment for me.  I want to fix me, not the car.  However, I can’t drive, and his work is requiring more and more travel.  A non-driving mom of two just does not work in today’s world. 

 I have dusted off the cane; and I now have to use it again due to increased pain, increased atrophy in my right foot, and decrease in my balance.   This back slide in progress is frustrating.   However, I am hoping that getting a confirmed diagnosis of Tarsal Tunnel Syndrome will open up treatment options for me, giving me a small light at the end of this long tunnel.

Thanks for reading!

* It is a theory that the fluoroquinolone antibiotic adverse reaction causes mitochondrial problems with those of us who have been affected so much.  Levaquin works by destroying the mitochondria of the bacteria.  It is a theory that it has caused damage of the mitochondria to the "good" cells also.  Statin medications have also been found to do this.  Please note this is a very simplified explanation.  Article on Mitochondrial Toxicity:  Mitochondrial Toxicity  (note added 3/15/11)

Ob-la-di, Ob-la-da, Life Goes On

February has been a trying month for me, forcing me to realize that despite how I feel, life goes on.   My husband’s travel has picked back up, requiring him to be out of town for the majority of the time.  We were fortunate that since I was floxed in July, his travel had significantly decreased until now.  His increase in travels occurred at the same time I was asked to help co-moderate one of the fastest growing online FQ support groups on Facebook.   Thankfully, we have a great team of moderators that have helped pick up the slack.   The increase of the demands on my body has not been easy.

I am learning that I have to pace myself, to leave energy for me at the end of the day when the kids come in the door needing snacks, homework, and dinner.  Unfortunately, these needs don’t stop just because my body has a hard time keeping up.  I have been lucky with the timing of my son’s driver’s license which has been beneficial in helping out in the chauffeuring area.  Driving is one of the most difficult things for me to do physically.  I STILL cannot drive for long periods of time.  My foot and arms will hold out for the two trips to my daughter’s school, but that is about it.  I will have to say this hindrance has been good for our checking account, since I am unable to carry out any shopping sprees, uh, I mean errands.  I find my body does not respond well to unexpected occurrences, such as kids’ illnesses, extra trips to the grocery store, sick dogs, or any “stressor” out of the norm.  I have a slow paced body, in a fast paced world. 

We have had some spring-like days lately, and although my neuropathy pain welcomes the warmer weather, it only makes me realize that the world continues to change around me.  I feel, in a way, I am being left behind.   As the days become longer and I see the new growth and rebirth of my backyard, I feel even more stagnant in my recovery.  I am craving to be able to work in my garden that I have spent years trying to create.  It is frustrating to stand by and see someone else take care of it or see it not done at all.   My body’s endurance is just not up to it.  It has been 8 months since my reaction, and I was hoping for more of an improvement by now.  I feel I have reached a plateau, neither getting worse or better.  I have had an increase in pain and weakness this month, but I feel it is more related to the increase in my activity level.   My muscles still fatigue quickly causing them to become sore and weak after very little effort.  I have learned that I need to tackle tasks in small steps, taking frequent rest breaks.  I have certainly come a long way from the first 3-4 months, but a far cry from being full mended. 

Doctor appointments are starting back again, and I received another opinion from a second rheumatologist.  He confirmed that my problems are neuromuscular, and my joint problems are more than likely secondary to joint instability from weakened muscles.  I am due to see my neurologist this week.  I feel I have reached my limit in acquiring any more answers from tests or doctors.  I believe there is not a whole lot the medical community can do at this point.  The best healer is time.  So for now as winter morphs into spring and I try to modify my living, life must go on.  Thanks for reading.

The Blame Game

Who is to blame?  This question has entered my mind time and time again.  Who do I totally blame for my adverse reaction to Fluoroquinolones?  This can be a loaded, and unfortunately, not a clear cut answer.  Well, at least in my case.  I knew I had several “mild” reactions to medications when I entered that immediate emergency care facility.  I could remember them all, except for one. I was so disoriented that I could not recall the name.   The physician rattled off several suggestions, but none sounded familiar.  Ugh! I should have made a list and kept it in my purse.  (Fault- mine)

The nurse later entered my “cubicle” where I had already received two bags of IV fluids.  I was feeling better, and could have a somewhat lucid conversation now.  He started my third and final bag of fluid, and injected an “antibiotic” into my IV.  He had been present when I stated I had a reaction to an “unremembered” medication.  He did not mention the name of what he was giving me.    I immediately started feeling horrible.  I started having the most severe headache I have ever felt in my life, which is saying a lot since I have a history of migraines.  I could literally feel the pain move down my spinal column and into my hips.  I started shaking uncontrollably as if I had a high fever.  After checking my temperature multiple times, it was determined I did not have a fever.  The pain started moving down my legs, into my arms, sternum, and jaw.  It was unbearable.  Why was I suddenly feeling worse when, I had been getting better?  The staff’s response was that my body had been through a lot from being so sick, it was most likely that.  “What medicine did you give me?”  The answer was, “Levaquin”.  I knew immediately that was the medication I could not remember.   Why had they not SAID the medicine BEFORE entering it into my IV?  (Fault- nurse)

Believe it or not, even though I was having difficulty walking, and I obviously was turning for the worst, they discharged me home.  I was in unbearable pain that night.  I returned the next day to the same clinic.  I mentioned to a “new” physician of what occurred the previous day, and that I had been given Levaquin, a medication which I had a mild reaction from before.  I described that I felt like I had been hit by a car.  Anything bound by connective tissue was in extreme pain.  I also had a rash covering my neck and chest.  The doctor questioned why I was given Levaquin in the first place, and stated he did not see that it had been needed.  My WBC count was up because of the food poisoning, so no need for the antibiotic. He proceeded to order IV Prednisone and non-steroidal anti-inflammatory to help counteract the reaction.   I started feeling somewhat better during the IV, and thought it was helping.  I returned home, with a prescription of more prednisone and Zantac to help stop the absorption of the Levaquin by my body.  However, I started feeling even worse.  I now felt like I was being burned by acid from the inside out.  It was the most excruciating pain I have ever had.  Since it was still the weekend, I once again returned to the clinic.  But this time I had done some research…..prednisone and NSAIDs are specifically listed on the Levaquin patient information sheet not to use during adverse reactions, because it will make the reaction worse.  Steroids cause an increase risk of connective tissue damage, and NSAIDs cause an increase in Central Nervous System reactions.  I asked this same doctor about this new revelation, and his response was, “That is only for 70 year olds, not for people like you.”  He once again gave me a shot of NSAIDs, and I stupidly accepted his answer. (Fault- physician)  (Fault- me for stupidly believing him)

Thank goodness the weekend was now over, and I made an appointment with my general physician.  By this time the uncontrollable crying had started.  I could hardly tell her what happened over the weekend through the hysterical sobs.  I was in SO much pain!  Somehow she was able to get the gist of it, and I am convinced she now thought I was crazy.  I showed her my prescriptions.  She fortunately was educated enough in Fluoroquinolone reactions that she knew I needed to immediately stop the prednisone and NSAIDs.  She instructed me to keep the Zantac to interfere with the absorption of the Levaquin.  She gave me a prescription of Hydrocodone for the severe pain.  (Thank God!)  She had never seen a reaction like mine, and thought something else was also an underlying cause.  I will stop here with this recount, because if you have been following my blog, you know the doctor visits started, and I now have been diagnosed with large and small fiber peripheral neuropathy.

But for most, the blame game does not end there.  Most often the tables are turned on the victims themselves.   I have been fortunate that my neurologist does not blame me, but many others are being blamed for their reaction.  Perhaps they were under stress, perhaps they have MS or Fibromyalgia and did not know it, they exercise too hard, or maybe they were predisposed for a neurological problem.   The list goes on and on.  FQ toxicity victims are not getting support from their physicians to help their fight against the drug manufacturers.   One recent post on the FB Fluoroquinolone group, describes it this way.  “[It is like] a rape that you report and no one believes. There’s evidence, proof, but they turn a blind eye. The rapist is free to keep raping over and over.  Everyone thinks that the one you are blaming is innocent....he hasn’t done it to other people. Why would he do it to you? So, they let him roam around....and he will attack, again & again!!!”  A response back, “Yes. And the victim gets blamed for everything.”

I cannot end this post without mentioning, in my opinion, the two most important parties in this incident, the FDA and the drug companies; (Johnson & Johnson makers of Levaquin, and Bayer the makers of Cipro.)  In my opinion, physicians have no intention of harming their patients.  They do their best with the knowledge they have.   However, I do blame the drug companies for poorly educating physicians, or the pharmaceutical reps that are pushing these medications.  Doctors are not educated in what to do for adverse events, which in my case made the situation worse.  They push the pharmaceutical reps to convince the doctors that these are great meds, even for minor bacterial infections.  In reality, these meds were originally intended for severe infections in which other antibiotics did not work, or for treating anthrax or malaria.  There is a black box warning for Fluoroquinolones for tendon ruptures, but I am finding that most never were given information about the warning.  If you receive an IV, as I did, no paperwork or warning is ever given to you.   (Fault- drug companies for not educating proper use and what to do for adverse reactions).

 The FDA mission is to protect the public from unsafe drugs.  However, they are doing nothing about the daily reports of adverse reactions.  Many of these medications are being severely restricted or banned by foreign governments, yet they are the number one prescribed antibiotic in the United States right now.  Just look on askapatient.com to see how often severe reactions are reported on that website alone, and that does not include the people who do not find that page.  There are 2600 court cases pending right now for tendon ruptures alone.  These do not include people that have been affected in other ways, like me.  The problem is the FDA acquires a lot of funding from pharmaceutical companies.  This causes a huge conflict of interest; therefore medications are not pulled from the market.  The current black box warning is only as a result of a lawsuit by the consumer group Public Citizen against the FDA, for ignoring long standing evidence that FQs cause tendon ruptures. (Fault- FDA for not protecting us)

So, who is to blame the most?  It certainly is not me or any other victim of Fluoroquinolone Toxicity.  It is easy to play the blame game; point fingers at the victims, the doctors, the pharmacist, or the nurse.  But in reality, it is the drug company that educates all of these people and the FDA that is supposed to protect us.  That is who I place the blame on the most.

The Psychology of It All

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

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

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

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

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

I've Got That Floxie Feeling

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

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

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

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

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

 

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

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

You’ve got that floxie feeling,

Oh, that floxie feeling,

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

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

New Year, New You

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

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

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

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

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

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

Thanks for reading!

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.

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