Hallelujah! Miss Independent

I feel I have gotten a glimpse of independence.  I have gone from missing independence to Miss Independent, well sort of.  I have come to the realization I need help to regain this sense of freedom.  The most useful tools, my car hand controls and my cane.  The hand controls in my car have helped tremendously.  I have now been able to start physical therapy because I can now get myself there, take my daughter to school, and even enjoy a trip to a small clothing store by myself.  

I had a hard time embracing the cane though.  I have to admit, I did not like the looks and the comments of “Oh! What happened to you? Did you hurt your leg?”  Or, “Why are YOU using a cane?   You are so young!”  Well, o.k. the comment about being young is kind of nice.  I will take that one.  But it was hard feeling everyone was watching, wondering “What does she have?”  I tried it without a cane for a few weeks, but after attempting to maneuver Charming Charlie, an accessory store, without it; I changed my mind.  I think the sales lady was totally convinced I had visited the Mexican cantina next door and had WAY too many margaritas.  I was falling into every other display, trying to regain my balance.  My pre-teen daughter was with me, and I caught a few sympathetic glances from the sales clerk to my daughter.   You know the look, “Oh that poor girl, having to be out with her drunken mother like that”.  The truth is, I don’t need my cane every single second of the day, but I reach this moment in time where my body totally locks up, my muscles are too fatigued to go on any more, and I lose my balance.  My walk becomes more of a slow shuffle of pain.  The problem is I never know when that moment will come.  So now I walk proudly with my cane, because I certainly don’t want to be thought of as the local lush.  

 

This whole experience of my adverse reaction, which in my opinion has now turned into chronic disorder, has taken many things I enjoyed away from me.  One of them is singing.  My voice tires easily with long phone calls and singing simple hymns cause me to get out of breath.  I think this is one of the areas where it bothers me the most.  I miss my weekly practice with our church choir and singing the occasional solo for my church.   My voice has a hard time reaching those first soprano notes that at one time was achieved so effortlessly.  This week my choir did a surprise “Random Act of Culture” at a local mall.  They sang Handel’s “Hallelujah Chorus”, one of my favorites.   I haven’t been able to sing with them the past 10 months, but I stepped out of my comfort zone and pushed my out-of-shape voice to sing along with them.   It was glorious, and for a short time, I certainly felt I was Miss Independent.  Hallelujah! 

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!

Driver's Education

I went back to driver’s education this week.  I had my much anticipated evaluation for hand controls for my car.  The evaluation was done by an Occupational Therapist (OT).  It felt quite strange being on this side of an OT evaluation and treatment.  We swapped OT stories, which did dampen my anxiety, some.

The evaluation was required by the installing company, not the state of Georgia. I found out that my assumption was correct.  There are NO laws in Georgia regarding adaptive driving equipment or training.  So the experience for me in my state may be different from what may be required in yours.  My training required was simply based on the OT evaluation and her recommendation of what I needed to safely drive. 

My evaluation consisted of vision, cognitive, physical evaluation and of course, a driving test.   The whole process took 4 hours, which totally drained me.  I have not had the endurance for much without frequent rest breaks, so this was taxing on my body. 

 

I have never had test anxiety, yet this day I was overwhelmed by it.  The vision test was pretty simple, testing acuity and depth perception.  Which, I have no depth perception and never have my entire life, because of a lazy left eye.  Even though I did not “pass” this portion of the test, it is a deficit I have had my whole life, and I am used to accommodating for it.  

The cognitive test was stressful for me.  I had to remember lists of words, do simple math in my head, comprehend a paragraph read to me and answer questions.  I passed in the “average” range, but it did confirm deficits which I knew I had.  My short term memory and math skills are no longer in their top performance. These are test that I, myself, would give to head injured clients.  It was frustrating that I now could not pass with flying colors.  Thanks Levaquin!

My physical evaluation also did not reveal too many unexpected areas of deficit.  Overall my strength is significantly weaker than it was prior to Levaquin.   My muscle strength (for any OTs reading this) was in the fair plus range proximally.  For those who are not OTs, my hips and shoulders were much weaker than my hands and feet. However, I know from just doing normal activities around the house, such as even typing this, my hands are also weak and fatigue quickly.  The one area that did surprise me was how slow my reaction time was with my right foot.  The OT had a gas and brake pedal attached to her computer to measure my reaction time with my foot, and then with my left hand to see if I could benefit from the change to hand controls.  My reaction with my hand was much quicker and in the safe range.  Because I did not have the movement of the car and feedback from the surrounding environment, I had a difficult time maintaining the correct speed with my foot.  The proprioception in my foot was impaired and I no longer was getting feedback from my ankle and foot where it was positioned.  This also surprised me, because I was not aware that I had this problem. 

 

I also was given the Georgia state written road test.  Good grief, when will the testing end!  The above testing took a total of 2 ½ hours.  The road test was about to begin.  Based on my evaluation, the OT recommended the push/rock hand control with a hand spinner knob used for steering.  After a quick review of how to work the controls, the driving practice began. 

 

I was suddenly catapulted into feeling like I was 15 again, learning how to drive a standard stick-shift.  The sensation of being on those quiet Mississippi country roads with Dad trying to get me to understand how to release the clutch and at the same time apply enough gas came rushing back.  The anxiety and the sweaty palms were included.  The difference here, I am now MUCH older, and the roads are definitely not quiet in the Atlanta area.   I first started in a business parking area, and gradually progressed to divided highway driving.  The driving consisted of many turns, start/stops on inclines, merging etc.  The controls actually require very little pressure and allow my left arm to rest on my knee or on the door arm rest.  The steering knob is used to help with one handed steering.  She originally had it place in the 2:00 position on the wheel and my shoulder quickly became fatigued.  She later moved it to the 5:00 position which was markedly better, but my arm was already so fatigued at that point.  By the end of our drive, I was feeling much more comfortable with it and could carry on a conversation with her while driving. However, my right arm felt like a noodle.   She will give me one more road practice in my own car once the controls are installed.  

I could have never driven that much with my foot, that is for certain, but I was discouraged with how quickly my arms did fatigue.  As I write this, it is 2 days after my road test, and my right shoulder is still quite sore and fatigues even more quickly than normal.  I have come to the realization that long car drives are no longer in my future.  But at least this gives me the ability to take my daughter to school, or run an errand. I am hoping with having the steering knob installed at a lower position, and not having my body so tense from the anxiety of learning something new, I will be able to withstand the driving better.  I also have an option to add in additional arm rests if I need them.  However, I am going to just try what they have recommended for now and see how that works.  They are getting installed on April 11. 

For those that I have spoken to that have been contemplating hand controls, I hope my experience helps you.  I am not going to lie; it can be quite a costly item.  It is not covered by insurance, however it can be applied as a deductible for your taxes as Durable Medical Equipment.   I am sure the cost will highly depend on your state law requirements.  You have to consider the cost of the controls with installation plus, in my case, the cost of the OT evaluation and the amount of training needed.  In my situation, since I still have children dependent on my driving and my husband is out of town a lot, the need outweighed the costs.  I have spoken to some in other states that did not have to undergo such an evaluation that I did, so they only had to pay for installation costs.  Others have told me their state required 10 hours of training, which certainly would make the cost astronomical.   In my opinion I would not get these controls without having someone really show me and train me in how to use them.  In this case, I say driver’s education is a must.   

Thanks for reading!