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!

Humpty Dumpty

One of the most beloved characters that Alice meets along her journey in Through the Looking Glass is Humpty Dumpty.  You know how it goes…..

“All the king’s horses and all the king’s men 

Couldn’t put Humpty together again.” 

I feel like Humpty at times.  It is taking a team of doctors, therapists, and gadgets to put me together again.   I feel I am almost there.  Not 100%, perhaps more like 60% to 70%*, with a few missing parts from my shell.   This is a long way from almost a year ago, when I felt I was in a thousand different pieces; Staring at them all, not having a clue where to begin to get my life back together.  

There have been some wonderful things to help me with this progression.  The first has been a good friend, one who calls and/or visits weekly.  You know who you are. :-)  Without this support, there have been some weeks I am not sure how I could have done it.   Just having someone to visit with, listen, help keep my mind off of the pain, helps immensely. 

The second, my podiatrist; who knew that an ointment could provide such relief to my burning feet.  I still have periods of pain, standing still is the absolute worst, but it has helped greatly with the nightly burning pain.  She has also prescribed Silver-thera Socks.  I often joke I need to attach my bionic legs every night.  They are the most attractive socks ever!  Not!  However, they send micro electrical currents to my legs while I am sleeping (impulses 20 min on, and 40 min off continuously).   They take the guess work out of where to attach the electrodes, as you would in a TENs unit.  These provide electrical stimulation at the cellular level to nerves, blood vessels, and tissue.  It is supposed to increase blood flow to promote healing and to prevent further atrophy.  It is a relatively new therapy, and my insurance did cover it.  It is not a quick fix, but is considered a long term treatment for neuropathy.  Most see improvements after three months of use.  At this point, I will try anything to save the muscles in my legs.  

The third is Aquatic Physical Therapy. This allows me to exercise without excessive stress to the joints, and work on balance exercises I could otherwise not do outside of the pool.  The last month, I feel the biggest progress has been made.  I have been going to the therapy pool for two months now, which has helped tremendously in my joint and muscle pain.  No, it is not gone, but I have gone from taking pain medications daily, to only once or twice a month.  My balance has increased, and I dare to venture out without the use of my cane for short trips.  I still need it if I am going to be out for long periods of time walking or standing, because of fatigue and the pain that usually accompanies it.  

I still have to pace myself, and try not to overdo it.  However, I have been known to push the boundaries too far, only to pay for it later.  I still need help with the heavy duties ~ cleaning house, cooking a meal, grocery shopping, gardening, but I am now able to take more responsibility in all of these areas.  I feel I am slowly getting my role back as CEO of our family corporation.  The pieces of this Humpty Dumpty are slowly coming back together again.

Thanks for reading!
* post note 6/17/11~This was originally posted as 80%.   My husband says I over shot my percentage of healing.  I guess it really is hard to measure.  Some days I do feel 80% when I compare to those first couple of months where I was essentially totally debilitated.  I most likely felt really good the day I wrote this post.  I think after being so low in my health, my idea of 100% has changed some.  It has given it an all new perspective.  However, when I look back at the things I used to do--paint my house by myself, exercise daily, was the "fix it" person, essentially was on "go" non-stop.  No, I can't do these things, and may not ever be at that level again.  When I compare myself to my "former" self, I would have to say it probably really is 60-70%, and on a really, really good day I feel like 80%.  I guess it is really hard to put a figure on it.  It is all so relative, compared to the pain I once was in.  Perhaps I should not have tried to qualify it.  Either way, I feel I have made significant progress....:D (if you read my pasts posts,  you know I can't do math anymore anyways LOL)

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!

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)

One Singular Sensation

I got a gift today in the mail.  I’m trying to decide what to think about it.  I usually LOVE getting those brown boxes with “Amazon” written on the side of it.  Hhhhmmmmm…..I’m not liking this one so much.  You see, there is something in that box I know I need, but am not willing to accept.  I tried to order it myself, several times, but I could not bring myself to hit that “submit order” button.  One night when I was at my worst, my husband “submitted” it for me.  So, now it is here.  I take it out of the box, and shove it to the side.  Not ready yet.  What will others think of it when they see it?  How will I react when they see I have it?  I won’t need it all of the time, it is collapsible, so that I can hide it when it is not in use.    I have a hard time even stating here what it is.  Ready for it, ready for it..…….a cane!  Yes, my dear, sweet husband hit the submit button for a cane!

I have been having an increase in loss of balance, even around the house.  I know it is just a matter of time before I fall.  The last thing I need right now!  I don’t feel I need it all the time, but when the pain is at its worse, and the muscle fatigue makes it feel like I am moving through mud, I know I need its support.  We ordered one that can fold up, so I can have it “on hand” if my weakness suddenly strikes me.  It does this sometimes, like a brick wall, out of nowhere---suddenly my legs are so weak, my knees buckle.  My husband picked it out.  That was quite a dilemma---do I go for a bold “fun” looking one, to state “here it is, get over it”?  Or do I go with one that is black and hopefully will not scream for attention.  He decided to go with the black with a lovely pearl handle.  

I think about the last time I used a cane---high school show choir.   Oh, but there was one other time, my sorority rush week.  We had canes and sang tunes from A Chorus Line.  Why are canes used for show choirs?  I guess maybe the canes with the white gloved “jazz hands” are really cool when you are up there dancing and singing for others.  But, this cane seems quite different.  No “jazz hands”, not so much fun.   Well, maybe if I sing a little tune in my head when I walk with it. I might even buy some white gloves. That could help, I guess.  Won’t you join me?

 One singular sensation
Every little step she takes.
One thrilling combination
Every move that she makes.
One smile and suddenly nobody else will do;
You know you'll never be lonely with you know who…….

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 Have a look around my blog---I have added some pages, and changed the content of others

Thanks for singing along. :-)