Appointments, Insurance, and Bills! Oh My!

The last few weeks have been jammed packed with appointments, and this coming week is the same.  I have felt overwhelmed with it all, and to make matters worse….insurance!  My husband’s company decided to change carriers on April 1st.  Anyone dealing with a chronic illness knows this can be a nightmare, and it has.  This isn’t the first insurance change for us since last July 17th when this all began.  This is our 3rd; yes count them 3rd insurance carrier in the last 10 months due to job changes, and now because of a company’s decision.  It makes juggling all of these medical bills interesting to say the very least.  I am still dealing with all three to make sure my medical bills are handled properly, and it has been horrendous.  

`Keep your temper,' said the Caterpillar.

Fed up with it all, I finally threw a good old-fashioned temper tantrum.  I have to say, it felt good, REALLY good.  My husband even asked me what ship I fell off of because I was cussing like a sailor.  Ironically, that very day a news article came out, stating that cussing has been shown to decrease pain.  I knew I had a good excuse!   The fact is, I don’t think I have ever been so angry since this happened.  Oh don’t get me wrong.  I have complained, I have complained plenty.  Just ask my family.  But, I don’t think I have ever felt like I really wanted to break something, throw something, punch someone, ANYTHING, like I have this week.  I am feeling really PISSED that this has happened, and I am left trying to deal with insurance to pay for it all.  I should be able to go to any physical therapist, doctor, facility that I damn well please and have it paid for!  And, I should not have to jump through hoops to get it covered!  It is NOT my fault that all three companies have a different idea of who is “in network”. 

 

It seems one appointment lately, just leads to another.  I have started physical therapy in a facility that offers aquatic therapy.  My ophthalmologist, seeing changes in my eyes, has now referred me to a neuro-ophthalmologist.   My physical therapist referred me to a podiatrist, who then ordered a MRI.  The podiatry referral I am very thankful for.  She prescribed a compound ointment for my right foot that has helped more with pain than anything orally I have ever taken.  I had my doubts that an ointment could help, but I will forever love her for this.  (See symptoms page for ointment contents).   Physical therapy is going slow; however, I do feel it is helping with my endurance and balance.  The warm water feels wonderful to all of my aching joints. 

This week has been a trying one emotionally.  The fact I am fast approaching my one year mark, and I still have such physical problems is frustrating to say the very least.  To still be getting MRIs, repeat nerve conduction tests, and new referrals at this point is exasperating.  However, this weekend was a perfect reprieve from such a bad week.  Whoever said that music soothes the soul was right, and it is a great alternative to hurling fleeting expletives.  The uplifting music from my daughter’s jazz band healed my spirit.   She was also confirmed yesterday in our church after finishing an 8 month confirmation class.  Top that off with Mother’s Day, and it was just what the doctor ordered.   It was a great way to step away from it all until this week brings even more…. appointments, insurance, and bills.  Oh My!

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!

I Can't Drive 55

Well, it is official.  I can’t drive 55, or at least I can’t unless I have the help of my cruise control.  My reasons for not driving 55 are very much different from Sammy Hagar’s.   My husband has been hounding me, yes HOUNDING ME, to look into getting hand controls for my car.  I am having increased pain and weakness in my right foot.  I keep thinking it will get better, hoping, praying.  However, it has now been almost 9 months of very limited or no driving at all.  The day it really hit me that I needed to give into this request was an early Monday morning.  My husband was out of town, and it was up to me to get my daughter to her school that was 15 miles away.  I got into the car, started the engine, put it into reverse to back out of our garage.  I pressed the gas, nothing, tried again, still nothing.  My muscles just were not going to cooperate.  So I gave it some help by pressing down on my knee with my hand to force pressure on the gas.  Hmmmm, I don’t think this is safe anymore.  I dropped off my son on the way, and FINALLY, I was on the divided highway.  Aaahh, relief for my foot!   I could use the cruise control now.  With the constant pushing of “accel, accel, accel” on the cruise, I finally got the car up to the right cruising speed to finish getting us to our destination of her school.  By the time I got back home, I was in tears from the pain and the frustration.   I called my husband.  “I think it is time for the hand controls”.  Since then I have done little to no driving, and the loss of independence is disheartening.
 

The task of finding out how to go about getting hand controls has not been easy.  We finally found a facility that installs them, but not until I undergo a 4 hour assessment from an occupational therapist.  This therapist is about to go to therapy, a weird change of roles for me.  Early in my profession I too would assess head injured clients to see if they could be deemed safe to be drivers.  Now it is me in that “drivers ed” seat, being assessed for hand controls.  My evaluation is coming up this Friday.

One of the most difficult things has been to find out Georgia laws regarding evaluations and drivers training for such things. Do I need a doctor’s referral?  Will I be required to have a certain amount of hours of training?   We searched everywhere, and could only find laws on PARKING.  So in Georgia, I guess you can drive however you want, but you better be careful where you park when handicapped.  Go figure!  We found plenty of laws for other states, but none for Georgia.  We still are not clear about this. From what we understand, I will need to undergo the evaluation, and then it is determined if I will need further training from that point.  After the evaluation, I will then need a written prescription of what type controls I exactly need.  Then the appointment will be set up with the installers.  I have also called many times to see if a doctor’s prescription is needed with NO returned calls.  I will not be happy Friday, if I get there and they don’t have everything they need to proceed.  This whole process is not very clear cut, and very frustrating. 

 

I am not exactly jumping for joy with the thought of getting hand controls.  I want to fix me, not change the car.  I have said this hundreds of times.  However, for me to become more independent and drive safely once more, I know I need them.  Because without the use of the cruise or the dangerous use of my hand to apply pressure, I just can’t drive 55!

Thanks for reading.

Life in the Rabbit Hole

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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


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

The Pool of Tears

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

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

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

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

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

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

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