Two Year Floxiversary: Lessons Learned

`You're thinking about something, my dear, and that makes you forget to talk. I can't tell you just now what the moral of that is, but I shall remember it in a bit.'

"'Perhaps it hasn't one,' Alice ventured to remark. "'Tut, tut, child!' said the Duchess. 'Everything's got a moral, if only you can find it.'"
- Lewis Carroll, Alice in Wonderland, Ch. 9

Today, it has been two years since receiving that ill-fated dose of Levaquin.  I haven’t posted in a while; I have been trying to use this time to reflect on how my life has changed, and to find my new role in life.  At times, I feel so consumed by it all, I wish I could run away and just hide.  While other times, I feel I have embraced what has happened.  I have dealt with chronic illness for six years now, first with my daughter's epilepsy, and now my Quinolone Toxicity and peripheral neuropathy.  Having been a healthcare provider as an Occupational Therapist, I have insight from all three perspectives; as a caregiver at work, a caregiver in the home, and now as the care receiver.   I will say the latter, has taught me the most.  The following are valuable lessons I have learned dealing with chronic illnesses from all three points of views, especially the past 2 years.  While a few of these will be familiar from previous blog posts, others are new.   I don’t necessarily always remember these lessons, and I probably need to review them myself at times.  This list is a stream of consciousness.  I thought it would be short, but it kept growing.  I would love to hear from you.  What lessons have you learned?

___________________________________________________

Make doctor appointments on Mondays or early in the week.  On Fridays everyone in the office is ready for the weekend, including the doctor.  He may not be as focused on you, but more focused on his weekend getaway.

Make appointments first thing in the morning or first appointment after lunch, this will reduce your wait time.

Bring something to read, in case you could not get the first appointment.

Ask your doctor how he is doing.   He probably doesn’t get asked this much.  He spends all day listening to other people constant complaints, and probably very few have asked him about his day.

Fire your doctor if he is not working with you, you feel he does not fully listen, or you don’t trust his decisions.

Always make a list of questions you have for your doctor.  In such a short amount of time spent with him you will more than likely forget something.

Educate yourself about your diagnosis.  Knowledge is power and you can have a much more meaningful conversation with your doctor if you know all of the medical terms, treatment options and available testing.  Read books, research online, talk to others with the same diagnosis.

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

Keep track of all medical information.  Get copies of medical records from all of your doctors.

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

Start a "Care Book" (See page)

BE YOUR OWN MEDICAL ADVOCATE!

Be prepared to fight insurance.   Insurance will always say no the first 2-3 times, but be persistent.  They are hoping you will give up, that is what they are counting on.  I found a well worded letter can still do the trick.

Research what medication you are being prescribed!  Ask the nurse what they are injecting into your IV before they do it. 

Medication can help with pain, and don’t be afraid to use them.  But proceed with caution!

Know you are not alone; 1 in2 people have a chronic illness.  Find support groups even if they are online.   People you meet online can sometimes be your best support. 

Remember most of the people you meet in online groups, are the ones that have not yet gotten better.  Those that have improved usually are no longer actively posting. 

Share your story, so others can learn from you.  Through sharing, you may receive advice, a doctor suggestion, or an idea you have never thought of before, that may make a difference in your health.

The Internet is not always right.

Educate your family and friends if they are willing to listen. 

Realize not everyone is going to “get it”.  Some will always think it is your fault; it is due to too much stress, lack of faith.  You have to learn to move on, and not get stressed that they don’t understand.  Find people that do understand.

It is NOT your fault that you are suffering from a chronic illness, or any illness for that matter.  We are human and are susceptible to all kinds of diseases, human error, or accidents.  Instead of asking why me, ask why not me?  We will all get something, at some point. 

No one experiences pain the same, and how it affects a person depends on their lifestyle and responsibilities.

 

It is o.k. to cry…you may even have a pool of tears.  Grieving for your former self is normal.

Watch for signs of depression.

Focus on what is “right” with you.

Write a journal.  Mine is online, but yours doesn’t have to be.  It is a good way to help with frustrations and anxiousness.

Be positive, surround yourself with positive people.  Avoid negativity.  That will not help you get better.

Ask for help.

Rely on your church, friends, and family for support.  They want to help.

It is hard to accept help!

In helping others, send cards, make a phone call, send an email, bring food in disposable containers, it is ok if you don’t know what to say.  Don’t be embarrassed that you have waited too late to call.  Any time is better than not at all.

Teach your kids all household chores; you never know when they will need to help because you are unable to do it.

Remember, your family is going though this as well.  It is not just you affected by the chronic illness.  Not all of them will react the same way.

If you are having a bad, crabby day….warn your family, and then go to your room!

Get a temporary handicapped hang tag, even if you never use it.    At least that option is there if the situation arises.

Use the handicapped space when you need it.

Don’t abuse your handicapped tag.  If there is a close space that is still reasonable for you, save the handicapped space for those who need it more.

Don’t be ashamed to use assistive devices.

Get outside of your comfort zone, test yourself, you may have gotten better and not know it. Take a trip!

Pace yourself, don’t overdo it.

Plan your day, allow extra time than normal incase fatigue hits.

It is o.k. to do nothing.  Take a nap.

Get help in the home, if your are able.

No pain, no gain no longer applies for exercise.  Slow and easy wins the race from now on.

Eat healthy.

Plan out your weekly meals:   Ask friends to prepare meals that can be stored in the freezer for future use.  If your husband travels, have him grill extra chicken before he leaves to be used later in the week.  If you are having a good day, make things to stock in your freezer for when you are not feeling well.  Use www.emeals.com for food planning, and your grocery list.

Chocolate cake is perfectly acceptable for your kids for breakfast.

Pets can be the best comfort.  They are good listeners and don’t give bad advice.

Beds can go unmade.

Read something NOT related to your illness.  Take a break from it.

Listen to uplifting music.

Crow a little.

Be grateful!

Sing!

Laugh!

Pray!

LIVE!!

 “One day at a time--this is enough. Do not look back and grieve over the past for it is gone; and do not be troubled about the future, for it has not yet come. Live in the present, and make it so beautiful it will be worth remembering.” - Ida Scott Taylor

Thanks for Reading!

Floxiversary

Anniversaries, birthdays, special events all seem to hold a special place in our hearts and minds, but what about other life changing events?  Yes, those seem to be remembered perhaps the most.  Sunday will be my one year Floxiversary; July 17, 2010, the day of my adverse reaction to Levaquin.   I guess it was my turn for our family’s July Event.   You see, July has traditionally not been a good month for our family.   I will never forget the day my daughter had her first large seizure, July 7, 2006.   It seemed our life came to a standstill.  All those unanswered questions of previous events in her life since toddlerhood had just been answered.  Oddly her worst seizures thereafter would always occur in July. Then in July 2007, she hurt her ankle requiring 6 weeks of Physical Therapy.  In July 2008, she broke her arm.   In July 2009, my husband tore 3 of the 4 heads of his hamstring muscle from a water skiing accident.  He chose not to have a surgical repair, but it still meant a long recovery.   So, why shouldn’t it be my turn to add to the collection of July family trials?  I guess 2010 was meant for me.  After all, the previous July’s seemed to have picked mostly on my daughter.  It was time someone else stepped up to the plate.  I am not one for superstitions, but I will be honest, it is hard not to feel a little nervous during the month of July.  So far we have not had any big mishaps.  However, it is only half way over….I will hold my breath just a little bit longer until we see August.

Actually the first part of July has been nice for us.   We just returned from our family vacation.  (We did have a few qualms about scheduling it in July.)  We were supposed to go to the Grand Canyon.  Our family loves camping, hiking, white water rafting and exploring national and state parks.  However, that vacation just would not work for me this year, so those plans were cancelled.  Instead, we opted for a cruise in the Eastern Caribbean.  It definitely was a change from our normal vacations.  We are used to going full speed ahead and exploring.  We were not used to lying around and being pampered all day with delicious food and drinks.  However, I don’t think I could have done anything different at this point.  I had to use my wheelchair some, mostly for embarking and the day of exploring where everything was on the ship.  Otherwise, I only needed my cane.  Mostly due to the fact there were about 4000 people on the ship, and I felt safer with it in the hustle and bustle of the other passengers.  

I did get lots of sun, and I feel like I have so much more energy this week.  I am suspecting it is because my Vitamin D levels are up, plus the fact I finally got to leave the house for an extended period of time for the first time in a year.  Even though I have more energy, I am having Achilles tendon pain in both ankles and increased knee pain.  Stairs are once again becoming difficult for me, and I am achier when waking in the mornings.  I just finished my 3 months of Physical Therapy (Aquatic Therapy), it helped tremendously and I give it lots of credit for getting my energy level up and my pain down.  However, despite my PT believing I need to continue with therapy, my insurance has cut me off.  We have appealed, but still haven’t heard back from them.  Perhaps that is why my Achilles tendons are inflamed and the increase in the achiness.  But you know how it seems to go, insurance knows best, or so they think.  

 I am itching to get out of my house and do things again....to me a real sign I am FINALLY doing better. Before, I did not even have the energy to think about going out.   So, I am setting a goal: I would love to be able to grocery shop by myself by the time the kids start school in August. I haven't been able to do this for a year now and it is driving me crazy. At first my husband did all of it, then I would come a long and supervise, and then I started helping some. Today I went with my daughter, and did 75% of it myself. I still have difficulty taking the groceries out of the cart at the checkout or carrying the heavy bags, but I am getting there.  I know grocery shopping is a pretty boring goal, but it is one I hope I can achieve.

I would say overall my Floxiversary, has been a good one.  I am seeing hope that I eventually will crawl back out of this rabbit hole and experience life again.  I am definitely better than I was a year ago, when at times I was actually begging for death.  A vacation was a good way to have an early celebration of feeling I will beat this after all.   Oh! but wait, what is it that I hear?  Is that my husband arriving home from his Seattle business trip?   Why does he look so glum?  Why do I need to go outside and take a look?   Why is the whole side of our Suburban smashed in?!?!   Of course, it is July!!!!

Thanks for Reading!

It Sucks!

This week I asked my husband to be a “guest writer” for my blog.  I thought it would be nice to hear from a family member’s perspective.  He agreed, under the condition that I would not change the content, only help correct grammatical errors etc. So here is his account of me being floxed, warts and all…….

Hello.   For a change Lori is not writing today’s blog, but rather me – her wonderful, fantastic, awesome husband.   (Of course, Lori’s would challenge that statement).   I have never written a blog, but Lori told me to just be honest about how her being “floxed” has impacted me and the kids.   With that in mind, I told her the title would be very honest and easy – because “It sucks!”

Guess I’ll start at the beginning.  The phrase “life can turn on a dime” comes to mind.   You see, I took Lori to the doctor the day she had her IV of Levaquin.   She went in very sick from food poisoning.  After about two hours and two IVs of fluid she started to be like her normal self; and then came the deadly IV!   She immediately started feeling bad.   Within thirty minutes she was in very bad pain and our life has not been the same since.   If I had not been there and seen it for myself, I would have a hard time believing a drug that is suppose to make you better did this to her.  But I witnessed it first-hand.   Boy do we wish we could go back in time and change that day.   Granted, Lori is not alone.   After all, many good people throughout the world have had their lives changed instantly; be it a car wreck, finding out you have cancer, or being floxed.   For any life changing event like that; it sucks!

Little did I understand how much that day would not only change Lori’s life, but all of our family’s.  For years, we have joked (with a lot of truth) that Lori is the CEO of our household.  She cooked, cleaned, did laundry, took the kids to school, made sure everyone got to appointments, etc.   Meanwhile, I focused on career and making sure we could pay the bills, pay for the kids’ college, and have something left over for retirement.   After being floxed, things have had to change dramatically with all of us doing more and relying on Mom a lot less.   Now keep in mind, Lori has her way of doing all those household things.   Since I have been reasonably successful in my career; I don’t like being told I’m doing simple chores the wrong way.   Who cares how the freaking towels are folded!   Now, Lori and I can find logical ways to solve these daily living issues.   However, the situation does bring about new relationship and emotional problems.   Okay, let me be blunt.   Lori and I rarely argued, but now they are much more common, and the arguments are mostly over stupid stuff.   We sometimes joke we love each other but don’t really like each other.  .…Hmmm; well to be honest we are often not joking with each other. :(  Even after nine months, we have not successfully conquered these new relationship and emotional issues which comes with being floxed.   It Sucks!

While the daily living issues can be frustrating, it is even more frustrating seeing someone you love in pain most of the day.   And the worst part is not being able to do anything about it.   I am probably like a typical husband.  Even if Lori just wants to vent and talk about her pain, I still want to try to fix it.   The thing is; I know we are past being able to fix it.   Both of us have researched extensively and we have made sure she has seen the best doctors; but there is still no “fix”.   On top of that, I am not a very compassionate person.   Lori probably needs a lot more emotional support from me, but I know I fall short in this category.   Maybe I’m still in an anger or denial stage.   Mostly, I just feel a loss for words.   When she tells me she’s in pain, the only thing I can think of to say is a simple “sorry”.   That doesn’t quite seem to do justice for the pain.    Because she is in pain, anything touching her hurts – so hugging or cuddling is not practical.    Of course, if we had one of our fights about the normal daily stuff, then I wouldn’t want to hug her to begin with. :)   It really just pisses me off (can I say that in a blog?) that the doctors don’t have something to take away more of the pain.   It Sucks!

Now generally I am a private person, but I am going to open up here.   Lori’s floxing really depresses me because it has crushed many of my personal dreams.  You see, I love to travel and do many things while on vacation.   However, now I realize there is no way Lori and I can do all the future plans I had for us.   Yes, we will work in some travel, but not to the degree I was hoping for.   African safaris, whitewater rafting in New Zealand, walking on the China wall, and especially spending time in the Italian wine country; may never happen.   Don’t get me wrong, I’m not giving up.   I’m already researching motor homes to buy when we retire so we can visit all the great National Parks.   My thought is Lori could travel with a nice recliner chair to rest most of the day.   I do recognize we have been blessed in that we have already taken many wonderful vacations as a family – Hawaii, London, New York, DC, and many more.   However, whenever your future hopes and dreams are “stomped on” it is still depressing.  It Sucks!

I hope all of that made some sense.   I know Lori has really enjoyed writing this blog and getting everyone’s feedback.   The online social community has been very therapeutic for her.   Even though we have been married twenty-one plus years, she can still surprise me.   After fifteen years of marriage, I finally heard her sing.  It was a Latin solo for our church.  It was beautiful!   As a mother, she will fight, fight and keep on fighting for her kids.   Our daughter has epilepsy and insurance companies are now scared of her!   Now her passion is advocacy for all of those being floxed.  Little did I or others know that she is an excellent writer!   Granted, she might not get a cure for herself, but she is making a difference so that fewer people will ever have to say – “I got floxed”.

Thanks for reading!

Advocacy: You'll Never Walk Alone

I have been trying to figure out my purpose in all of this.  Then it dawned on me.  I have become a Medical Advocate.  I have been placed in this role several times in my life, not realizing that my life always seems to steer this way.  As an Occupational Therapist, I was an advocate for my patients. I was a therapist that always explained things in full detail to my clients, and often gave them educational material for support.  I wanted to make the transition during this difficult part of their lives as painless as I could.   It was up to me to speak for them in our weekly rounds, to make clear their medical needs.  Did they need a longer length of stay?  Was further care needed for them after discharge?  Did they need assistive devices?  I had to document my thoughts well for insurance and for the attending physician, because if their needs were not well articulated, it could affect the life of the person for which I was advocating.

I left that role when my children were younger, feeling the need to be with them during their impressionable years.  Little did I know that I would be once again thrown into the responsibility of medical advocate.  In 2006, my daughter was diagnosed with Epilepsy.  I was horrified by the diagnosis, but I think I was even more horrified by how I was told.  She had been given an EEG prior to seeing the pediatric neurologist.  It was just my daughter and myself at the appointment.  We had never met him.  The doctor arrogantly strolled in the room, never made eye contact with us, and loudly proclaimed that she had epilepsy, and her EEG was severely abnormal.    She would most likely not outgrow it, and she needed to be put on medication immediately.  Here is the prescription; you need to make another appointment.  He left the room as quickly as he had entered it.  I was dumbfounded.  I could not believe the harshness of it all.  My daughter, who was 8 at the time, did not understand his words, but she certainly could tell something was wrong by the shock on my face.  I could not believe I was not given any educational material.  Not a nurse, a social worker, or any one came to explain to me what was actually being said.   I could not believe we were being thrown into this alone.  I was a therapist with some understanding of neurological problems, and yet I still felt I needed education.

I, of course, poured myself over the computer, found wonderful support groups, and met other moms that were dealing with the same situation.  They shared their stories, which made me realize I really wasn’t alone.  My daughter went 3 years battling getting control of her seizures, mostly because the doctors would not listen and kept prescribing more and more medications that were wrong for her.  We went through 4 neurologists until we finally found one that listened.  However, we came to another road block.  We had finally found the right medication, but insurance refused to pay for it.  I fought tooth and nail to get the one medication that finally helped to be covered by insurance.    I found a well worded letter can still do the trick.   She has now been seizure free for 1 year and 7 months.   

I did not want others to have to go through what I had, with the feeling of nowhere to turn.  I took the lead from the mom’s that had shared their stories with me, so I started a carepage for her.  I was advocating for her, yet helping others along their journey too by documenting our successes and failures. 

I was beginning to think it was time for me to possibly return to work, or find a volunteer job.   However, my life once again had other plans.  I had my severe adverse reaction to Levaquin, and here I am again.  I am a medical advocate once more, this time for myself.  The hours of research, doctors appointments, bills piling up on my kitchen desk, and the insurance fights have begun.   As you can see I have again decided to document my trials and tribulations.  I want to warn others of the dangers of Fluoroquinolones, and yet help others going through this know they are not alone.  I want to share personal stories, because those were the ones that seemed to help me most with my daughter’s diagnosis.  

Not long ago I watched HBO’s Temple Grandin, about a remarkable woman’s journey through Autism.  Two scenes in particular really moved me.  One, when Temple and her mother attended an Autism conference; Temple proudly stands up and tells the audience what it is like for her to have Autism. You could see the hunger of the other parents wanting to learn from her.   She owed all of her success to her mother’s advocacy and pushes to allow Temple to fit in.  It made me feel proud as a fellow mother and advocate for a daughter.  I think I even sat up taller on the couch during that part. 

  

The second was at Temple’s college graduation.  She had overcome so many obstacles and was speaking in front of all her fellow graduates.  With the utmost confidence, Temple starts singing “You’ll Never Walk Alone”.  To me, it explains perfectly the reason why I have been a medical advocate during my career, as a mother and now for myself and others with Fluoroquinolone toxicity.  I want others to know, you’ll never walk alone.   This is why I write my blog.

You'll Never Walk Alone

When you walk through a storm

hold your head up high

And don't be afraid of the dark.

At the end of a storm is a golden sky

And the sweet silver song of a lark.

Walk on through the wind,

Walk on through the rain,

Tho' your dreams be tossed and blown.

Walk on, walk on with hope in your heart

And you'll never walk alone,

You'll never, ever walk alone.

Walk on, walk on with hope in your heart

And you'll never walk alone,

You'll never, ever walk alone.

Merry Christmas and Happy Holidays!

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

Thanks for reading,

Lori

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!

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. 

Life in the Rabbit Hole

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

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

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

 

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

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

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

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

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

I have added a poll to my blog, please participate.  Thanks!

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

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

The Really, Really Ugly

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

The Bad

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

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

The Good

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

 

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

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

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

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.