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.

Mito or Not Mito: That Is the Question

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

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

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

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

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

Thanks for reading!

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

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

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

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

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

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