The Mighty Mito ~ Part 2

As promised, I have an update from my visit with Dr. Kendall, a mitochondrial specialist.  In my last post, my husband accused me of writing for Wikipedia, saying it was pretty boring.  Well, it is sort of hard to make Mitochondrial Disease sexy and exciting, but I will see what I can do.

I really like Dr. Kendall and I definitely feel I have come to the right place for answers.  She strongly believes I have Mitochondrial Disease based on my own medical history and that of close family members.  She said I have too many “red markers” for Mito to ignore it.   We are going forward with the extensive testing, which includes a buccal swab test for mtDNA and blood/urine tests.  We have opted not to do the muscle biopsy (a common diagnosing tool) at this time.  We both would rather avoid something so invasive, since my body has had slow healing time after other minor injuries.  There are currently 1500 genes involved in the mitochondrial process, and with current technology, only 40% can be studied.  She stated that no matter what the test may or may not show, she has no doubt I have Mito, and the problems could very well lie in the 60% of the genes they can not yet study.  I could possibly have both forms of it, genetic (based on family history) and toxic (caused by the Levaquin).  The combination of the two may explain why I am no longer making improvements. During her exam, she also reconfirmed dysautonomia and gastroparesis.  I am to have a gastric emptying study to learn more about the gastroparesis. 

In our further discussions, she asked me a little about the FQ support groups in which I am involved.  I gave her an overall synopsis of the symptoms people seem to suffer after an adverse reaction to a Fluoroquinolone Antibiotic.  She has seen others affected by Levaquin, and said for the most part; those with “true” toxic Mito seem to improve.  She has however, seen a few that seem to get “stuck” in their recovery for whatever reason.  She does believe that in general, those that have a Mito toxic reaction to medications most likely had a genetic mutation which allowed the medication to affect them.  There are varying degrees of this problem, so I would assume that would account for the multitude of ways people are affected.  

So, in a nutshell, I have been diagnosed with Mitochondrial Disease.  It will take until March to get all of the labs back.  There is no cure, especially if there is indeed a genetic component.  However, there is treatment to help encourage the cells to function at their maximal potential.  In the meantime, I will start on the “Mito Cocktail” once all labs have been drawn.  It seems this cocktail varies person to person with which supplements are used and the amount given.  I am sure mine could change based on what the findings are. 

 

I do believe I have found my answer to why Levaquin affected me the way that it did. I don’t necessarily think this is true for everyone who has been affected by FQ antibiotics.  I have always jokingly said that my family would make a great medical research study because of all the rare disorders present.   I think in a way, this is what my testing may in fact do.  In this process, I could also be inadvertently helping other family members get long awaited diagnoses.    I am sure I am just beginning to learn what all this diagnosis will entail for me.  

I will periodically update my blog to give the status of how the cocktail is going, and to also let you know what my labs indicate.  I can’t promise I will do it often.  I just haven’t had the energy for it lately.  I realize I did not follow through with my promise at the beginning of this post.  So, for my husband……Once upon a time, there was very sexy, exciting  mitochondrion that was stalked by a dark, deadly Fluoroquinolone Antibiotic…….Well, you know the rest.

Thanks for reading!

I have added a page tab for mitochondrial disease which includes many links.

The Mighty Mito (Part 1)

I have been away from my blog for quite a while, and I have had several emails requesting an update with how I am doing. (see my symptoms list for an update).  This blog post focuses on my next steps in my journey to hopefully more healing, the investigation of the mitochondria.

Mitochondrial dysfunction has been resurfacing time and time again among the online groups and discussions with my doctors. What is mitochondria?  The mighty mitochondria is the “power house” for our cells, without them our bodies cannot function at its optimum.  Mitochondria are organelles in our cells that convert nutrients into energy for our bodies and are responsible for 90% of cellular energy.  When they are malfunctioning, they can cause a “brown out” of any or several body systems. 

 I have avoided being tested for mito dysfunction, because of the dreaded muscle biopsy.   However, I have continued to research this theory, and several discoveries have made me finally pursue this possibility:

 

First, I have had 3 doctors mention mitochondrial dysfunction to me, and each independently recommended a muscle biopsy.  I certainly have not wanted to undergo something so invasive.  So, until now, I have put this request to be tested on the back burner.  It has now been almost 1 ½ years since my last reaction to Levaquin.  My pain has greatly reduced, and I no longer require anything for pain.  It still resurfaces occasionally, but the pain is bearable without the use of medication.  However, the muscle fatigue, digestive problems, exercise intolerance, autonomic dysfunction and fasciculations have started to increase again.  These all still interfere considerably with my quality of life.  Multi-system problems, muscle fatigue and exercise intolerance are the hallmark symptoms for mitochondrial dysfunction.

Second, my family history also has me wanting to research this further.  Disorders that run in my family (Parkinson’s, epilepsy) have been linked to mitochondrial disorders.  I think it is possible for me, that I had mitochondria that perhaps where not functioning at their optimum, and Levaquin “did them in”, so to speak.

Third, MitoAction.org has several interesting podcasts that possibly support this hypothesis.   One titled “Drug Toxicity and Mitochondria” actually discusses Fluoroquinolones that have been found to cause mito dysfunction.  (Minute mark 52)  Trovafloxacin, a fluoroquinolone antibiotic, was found to cause mitochondrial damage and was withdrawn from the market.  The speaker then proceeds to say, that once one medication in a drug class has been found to cause mito dysfunction, it is safe to assume others in the same class will do the same.  That is enough for me.  

Fourth, I have found that one of the top docs for mitochondrial dysfunction is very close by; I could not pass this opportunity up.   Dr. Fran Kendall is the medical adviser for MitoAction.org.  She is on the cutting edge of research and does much of her testing through buccal swabs and blood tests first.  She has found that muscle biopsies are less than 30% accurate in diagnosing mitochondrial dysfunction; therefore, muscle biopsies are the last resort for her practice. 

   

Dr. Kendall sent me a packet to complete that wanted everything, including the kitchen sink.  She wanted a detailed description of family medical history going all the way back to my grandparents and their siblings, medical records and of course my own history.  I sent the 80-page packet of information to her, which she will review before seeing me.  Despite having an appointment with her, I am still not certain that I will actually be tested for mitochondrial disease.  It depends on a lot of factors: what Dr. Kendall thinks, how I feel about her after our first meeting, and testing involved.  I do feel it is at least worth this first step in the investigation.

What happens if I do get a diagnosis for mitochondrial disease?  Mito-toxicity from medications is thought to more than likely improve.  I guess the big question would be, “Do I have both genetic and toxic mitochondrial disease?”   There is no cure for genetic mitochondrial dysfunction; however there is treatment to allow your body to function at its optimum.  These include diet, exercise and a “mito cocktail” of supplements.  I know this is what many are doing now in the FQ toxicity world, but for me, I am tired of haphazardly taking supplements without knowing what will or will not truly help me.  Guidance in this area would be greatly appreciated.  

Perhaps, this is the reason some seem to improve after their adverse reaction.  Suppose the theory that FQs damage mitochondria is true.  Could it be that those with a "pure" toxin induced disorder are the ones that improve?   Could it also be that those of us that don’t heal, had an unknown subtle dysfunction before, and this has made it worse?  I wonder if that is the difference between those who get better, and those who don't.  Bear in mind this is MY theory, and none of it is based on fact.  I am curious to hear Dr. Kendall’s views on Fluoroquinolone antibiotics and the mighty mitochondria. 

Thanks for reading!

Coming December….The Mighty Mito (Part 2)

Deep Breath, Start Fresh

The theme for Invisible Illness Week is Deep Breath, Start Fresh.  How can you take what you have learned with a chronic illness and move forward, continue to live your life?  My first thought on this:  I have to forget my past, forget the life I once had and plow ahead.  I shouldn’t dwell on how easy it used to be to do my daily duties as wife and mother.  This is the here and now, and I can’t look back.

There are so many references in leaving your past behind, just Google it and you will see.  So it MUST be the right thing to do, right?  Who could forget the scene in The Lion King between Pumbaa and Timon, when trying to convince Simba of this. 

Pumbaa:  It's like my buddy Timon always says: you got to put your behind in your past.
Timon:  No, no no. Amateur. Sit down before you hurt yourself. It's "You got to put your past behind you."

I have been struggling with this concept.   Which past do I put behind me?  The pain-free, energy-filled pre-Levaquin days, or the 14 months of recovery post-Levaquin?  The truth is I can’t forget either one.  I can’t forget the part of me that enjoyed singing, traveling with my family, being involved with my kids activities, being the “fix-it” person of our household, being a mother and a wife.  That is who I was and still am, even though these things no longer come easily.  I also cannot leave behind those I have met in this horrific journey of my adverse reaction.  Many people I initially met are still suffering, and daily I meet those newly affected.  I can’t turn my back and pretend these people have never come into my life.  Can I somehow move on, and yet still embrace a little bit of all of it?

In the Alice in Wonderland movie, the Mad Hatter complains to Alice, “You’ve lost your muchness.”  Then as he points to Alice’s heart, “In there, something is missing”.   The Mad Hatter points out to Alice that she has lost who she used to be, her true essence.  She has lost the things in her past that make her Alice.   She later has to reclaim her “muchness” to slay the Jabberwocky.  As in Alice, at the end of The Lion King, Simba is reminded by the Great Spirit, “Remember who you are!”  He realized that his past, even though gone, was instrumental in his present self.  Without this knowledge, Simba would not have been able to win back his family’s pride.

A big part of my past was singing in my church choir.  This past week I dug down deep into my soul and found a part of my “muchness”.  I went to choir practice for the first time in well over a year.  Every joint and muscle in my body hurt after that 1 ½ hours; but I will not let Levaquin take this part of my past away from me.  It is a part of who I was, and still am.  It is a part of my true essence.  After 14 months, I think I deserve to get this part of my life back.  I have decided it is time to start doing this in other parts of my life as well.  I have to win back my “family’s pride”. 

Why do we have to leave our past behind?   Aren’t we also taught that the past is who we are?  That we learn from our history?  I think the answer may be a little bit of both…remember who you really are, regain your muchness, find your true essence, but then take a deep breath and start fresh.

Thanks for reading!

30 Things About My Invisible Illness You May Not Know

I have chosen to blog again this year for Invisible Illness Week through Bloggers Unite.  Our first assignment is to complete the "30 things" survey, to educate other bloggers about our illness.

1.       The illness I live with is:  Peripheral neuropathy and a medication induced neuro-muscular disorder caused by Fluoroquinolone Toxicity.

2.   I was diagnosed with it in the year: July, 2010 after a second and very severe adverse reaction to Levaquin.

3.   But I had symptoms since: May 2009 after my first time to be given Levaquin, but they were mild.

4.   The biggest adjustment I’ve had to make is: Having to slow down, let others do for me.

5.   Most people assume: I feel great, because I look “normal”

6.   The hardest part about mornings is: I move very slowly because my muscles feel very heavy.

7.   My favorite medical TV show is: Dr. G: Medical Examiner, Mystery Diagnosis, Grey’s Anatomy (o.k. that was more than one.)

8.   A gadget I couldn’t live without is: My hand controls for my car.

9.   The hardest part about nights is: I am beyond worn out and the electrical zaps from the neuropathy.

10.   Each day I take 4 pills & vitamins. (No comments, please)

11.   Regarding alternative treatments I: have not tried many myself.  However, the use of Silver-thera socks for my neuropathy and physical therapy together have allowed me to go medicine free.

12.   If I had to choose between an invisible illness or visible I would choose: Hmmmm, neither.

13.   Regarding working and career: I was fortunate to be a stay-at-home mom, so I did not have to worry about trying to maintain a job.  However, being a mom is job enough with a chronic illness.  I needed a lot of extra help and support for the first 6 months, until I could gradually start taking back my normal “duties”. 

14.   People would be surprised to know: It was caused by an antibiotic, Levaquin. (Fluoroquinolone Toxicity)

15.   The hardest thing to accept about my new reality has been: I can’t be as active as I once was.  Things tire me out much more quickly and cause muscle and joint pain.

16.   Something I never thought I could do with my illness that I did was: Start a blog, and become an advocate for others affected by this medication

17.   The commercials about my illness: There are no commercials about what I have.  Most doctors will not even acknowledge these severe adverse reactions from Fluoroquinolone antibiotics.   Fortunately, my doctor does. This makes the community of thousands that are affected by these meds, feel even more alone.  However, more and more medical evidence is being published.  A recent article in The Annuals of Pharmacotherapy supports the fact that Levaquin can cause this.

18.   Something I really miss doing since I was diagnosed is: Camping, hiking, white water rafting, and exploring nature with my family.

19.   It was really hard to have to give up: my independence and role as CEO of our household.

20.   A new hobby I have taken up since my diagnosis is: Blogging

21.   If I could have one day of feeling normal again I would: Go on a hike in the Mountains.

22.   My illness has taught me: God is with me, even through the tough times.    

23.   Want to know a secret? One thing people say that gets under my skin is: “You don’t look sick”

24.   But I love it when people: talk to me about other things beside my illness.

25.   My favorite motto, scripture, quote that gets me through tough times is: Philippians 4:13 ~ “I can do all things through Him who strengthens me.”

Joshua 1:9 ~ “Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go.”

26.   When someone is diagnosed I’d like to tell them: It will get better, don’t despair.  It really, really does!!

27.   Something that has surprised me about living with an illness is: How self conscious I felt using a cane and handicapped parking sticker, when I was at my worst.  It was hard for me to let people “see” my weakness.  I don’t use these things now. 

28.   The nicest thing someone did for me when I wasn’t feeling well was: Give me a Kindle when I no longer had the strength to hold open a book.

29.   I’m involved with Invisible Illness Week because: I feel empowered by helping others know they are not alone, and to spread awareness of adverse reactions to Fluoroquinolone antibiotics that lead to chronic problems.   

30.   The fact that you read this list makes me feel: very happy.  

To learn more information about Fluoroquinolone Toxicity please join us at  Fluoroquinolone Antibiotic Toxicity (Cipro, Levaquin, Avalox, Floxin) and Saferpills.org

Thanks for reading!

Bait-and-Switch

The months of July and August pulled a fast one on me…the old bait-and-switch. Our family made it through the month of July relatively unscathed this year.  Well, except for the Suburban.  July has historically been our "bad luck" month,  but the first of August hit me with several hard punches and hard they still are.  
 
I have been diagnosed with diverticulitis, and if any of you have ever had this, you know it is far from fun.  The restrictive diet, along with the antibiotics, in itself can be hard on a healthy body, and even more on one already weakened.  If that was not enough, the CT scan to diagnose the diverticulitis found a suspicious “spot” on my left ovary, right near the diverticulitis.  That of course, led to an ultrasound which confirmed a dermoid cyst, which is actually classified as a tumor (cystic teratoma).  They are congenital, meaning I have had it my whole life.  It most likely still is slow growing and benign.  Of course, it will still have to come out, but there is no rush.
 
Now I know some of you are wondering if this is related to my Levaquin reaction.  Well, the dermoid is definitely not, since it is congenital.   The jury is still out about the diverticulitis.  I do know it is often genetic, and it does run in my family.  I also have a long history of digestive problems since my pre-teen years.  However, after my adverse reaction, I feel everything about my digestion changed.  It was not the same at all.  Also, a previous colonoscopy pre-Levaquin showed nothing.  There was no evidence of diverticulosis, the precursor to diverticulitis.   So, I do feel I was more than likely “prone” to this based on my history and family history, but I also feel the changes caused by the Levaquin precipitated it.
 
For now I am on a very restrictive diet for the diverticulitis, and the antibiotics Bactrim and Flagyl.  I fought hard against the Flagyl, since it is also known to cause severe side effects, and is contraindicated for those with Peripheral Neuropathy.  However, I was not improving.  So after many tears, I said a prayer and swallowed the pill down.  So far, it has only mildly increased my PN symptoms.  This has shown me that I can survive antibiotics post Levaquin.  I am waiting to see my OB/GYN on how to proceed with the dermoid.  I do not see him until late September.  He more than likely would not be able to do anything about the growth anyway until I have healed from the diverticulitis, which usually takes 6-8 weeks.  
  
On that note, I would like to put out a small request; I hope You are listening up there.  Would September and October possibly be kind to me, because the July-August “bait-and switch” has just about done me in.  
 
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!

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)

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.

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!

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.