Down the Rabbit Hole....

Two Year Floxiversary: Lessons Learned

2012-07-17T10:16:00.000-04:00

`You're thinking about something, my dear, and that makes you forget to talk. I can't tell you just now what the moral of that is, but I shall remember it in a bit.'

"'Perhaps it hasn't one,' Alice ventured to remark. "'Tut, tut, child!' said the Duchess. 'Everything's got a moral, if only you can find it.'"
- Lewis Carroll, Alice in Wonderland, Ch. 9

Today, it has been two years since receiving that ill-fated dose of Levaquin. I haven’t posted in a while; I have been trying to use this time to reflect on how my life has changed, and to find my new role in life. At times, I feel so consumed by it all, I wish I could run away and just hide. While other times, I feel I have embraced what has happened. I have dealt with chronic illness for six years now, first with my daughter's epilepsy, and now my Quinolone Toxicity and peripheral neuropathy. Having been a healthcare provider as an Occupational Therapist, I have insight from all three perspectives; as a caregiver at work, a caregiver in the home, and now as the care receiver. I will say the latter, has taught me the most. The following are valuable lessons I have learned dealing with chronic illnesses from all three points of views, especially the past 2 years. While a few of these will be familiar from previous blog posts, others are new. I don’t necessarily always remember these lessons, and I probably need to review them myself at times. This list is a stream of consciousness. I thought it would be short, but it kept growing. I would love to hear from you. What lessons have you learned?

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Make doctor appointments on Mondays or early in the week. On Fridays everyone in the office is ready for the weekend, including the doctor. He may not be as focused on you, but more focused on his weekend getaway.

Make appointments first thing in the morning or first appointment after lunch, this will reduce your wait time.

Bring something to read, in case you could not get the first appointment.

Ask your doctor how he is doing. He probably doesn’t get asked this much. He spends all day listening to other people constant complaints, and probably very few have asked him about his day.

Fire your doctor if he is not working with you, you feel he does not fully listen, or you don’t trust his decisions.

Always make a list of questions you have for your doctor. In such a short amount of time spent with him you will more than likely forget something.

Educate yourself about your diagnosis. Knowledge is power and you can have a much more meaningful conversation with your doctor if you know all of the medical terms, treatment options and available testing. Read books, research online, talk to others with the same diagnosis.

Take notes or have someone go with you to take notes.

Keep track of all medical information. Get copies of medical records from all of your doctors.

Have doctors share information. Make sure all tests are forwarded to all your doctors with a summary note. This will help stop duplicate testing.

Start a "Care Book" (See page)

BE YOUR OWN MEDICAL ADVOCATE!

Be prepared to fight insurance. Insurance will always say no the first 2-3 times, but be persistent. They are hoping you will give up, that is what they are counting on. I found a well worded letter can still do the trick.

Research what medication you are being prescribed! Ask the nurse what they are injecting into your IV before they do it.

Medication can help with pain, and don’t be afraid to use them. But proceed with caution!

Know you are not alone; 1 in2 people have a chronic illness. Find support groups even if they are online. People you meet online can sometimes be your best support.

Remember most of the people you meet in online groups, are the ones that have not yet gotten better. Those that have improved usually are no longer actively posting.

Share your story, so others can learn from you. Through sharing, you may receive advice, a doctor suggestion, or an idea you have never thought of before, that may make a difference in your health.

The Internet is not always right.

Educate your family and friends if they are willing to listen.

Realize not everyone is going to “get it”. Some will always think it is your fault; it is due to too much stress, lack of faith. You have to learn to move on, and not get stressed that they don’t understand. Find people that do understand.

It is NOT your fault that you are suffering from a chronic illness, or any illness for that matter. We are human and are susceptible to all kinds of diseases, human error, or accidents. Instead of asking why me, ask why not me? We will all get something, at some point.

No one experiences pain the same, and how it affects a person depends on their lifestyle and responsibilities.

It is o.k. to cry…you may even have a pool of tears. Grieving for your former self is normal.

Watch for signs of depression.

Focus on what is “right” with you.

Write a journal. Mine is online, but yours doesn’t have to be. It is a good way to help with frustrations and anxiousness.

Be positive, surround yourself with positive people. Avoid negativity. That will not help you get better.

Ask for help.

Rely on your church, friends, and family for support. They want to help.

It is hard to accept help!

In helping others, send cards, make a phone call, send an email, bring food in disposable containers, it is ok if you don’t know what to say. Don’t be embarrassed that you have waited too late to call. Any time is better than not at all.

Teach your kids all household chores; you never know when they will need to help because you are unable to do it.

Remember, your family is going though this as well. It is not just you affected by the chronic illness. Not all of them will react the same way.

If you are having a bad, crabby day….warn your family, and then go to your room!

Get a temporary handicapped hang tag, even if you never use it. At least that option is there if the situation arises.

Use the handicapped space when you need it.

Don’t abuse your handicapped tag. If there is a close space that is still reasonable for you, save the handicapped space for those who need it more.

Don’t be ashamed to use assistive devices.

Get outside of your comfort zone, test yourself, you may have gotten better and not know it. Take a trip!

Pace yourself, don’t overdo it.

Plan your day, allow extra time than normal incase fatigue hits.

It is o.k. to do nothing. Take a nap.

Get help in the home, if your are able.

No pain, no gain no longer applies for exercise. Slow and easy wins the race from now on.

Eat healthy.

Plan out your weekly meals: Ask friends to prepare meals that can be stored in the freezer for future use. If your husband travels, have him grill extra chicken before he leaves to be used later in the week. If you are having a good day, make things to stock in your freezer for when you are not feeling well. Use www.emeals.com for food planning, and your grocery list.

Chocolate cake is perfectly acceptable for your kids for breakfast.

Pets can be the best comfort. They are good listeners and don’t give bad advice.

Beds can go unmade.

Read something NOT related to your illness. Take a break from it.

Listen to uplifting music.

Crow a little.

Be grateful!

Sing!

Laugh!

Pray!

LIVE!!

“One day at a time--this is enough. Do not look back and grieve over the past for it is gone; and do not be troubled about the future, for it has not yet come. Live in the present, and make it so beautiful it will be worth remembering.” - Ida Scott Taylor

Thanks for Reading!

The Mighty Mito ~ Part 3

2012-03-11T15:13:00.000-04:00

The day finally came; I had my appointment to review my results with Dr. K. I wasn’t expecting much, because I had received copies of my reports prior to meeting with her. I had seen for myself, nothing seemed to be jumping out as real problems. The only thing that appeared odd was that I was low in 18 of my amino acids in the urine test. I was hoping this would be important in some way. However, I was told that this was not of significance and can vary throughout the day. That was frustrating to hear to say the least. My buccal swab test was normal for Complex IV and for the Complex I, it was .1 below the normal range. Again, this is not significant. The buccal swab test is only 82% accurate. I knew this when entering into this way of testing, but I wanted to try the least invasive way. Buccal swabs cannot test for Complex II and III of the mitochondrial chain. It is only a screening test. Non-invasive evaluation of buccal respiratory chain

Dr. K basically said the next step is a muscle biopsy, but I refuse to do it. The reliability rate for that is also low. She stated that she knew people who have had 3-4 biopsies, all of which have come back with different results. I feel for me, there is not enough true benefit to do it. Yes, it MAY perhaps give me a “name” of what has happened, but she would not treat me any differently. The risks however, far outweigh the benefit in my personal opinion. I feel my body would not handle an invasive procedure like that very well, and it is still a high possibility the test would tell me nothing. She still believes that Levaquin was "toxic" to me, and that it probably did damage my mitochondria, just no proof of it. She wants to retest me in November, a year after my first tests, to compare the results. Perhaps later down the road, I will still choose to do the biopsy, but for now- NO.

So, to put it briefly, this is what my current doctors “think”: Dr. K- mito toxicity from the Levaquin, but can’t be proven; My neurologist, peripheral neuropathy (small and large fiber) confirmed by testing and a possible myasthenic disorder, which has yet to be proven; Rheumatologist, not a rheumatological problem, he believes it is all neurologically related. All 3 have mentioned mito as the underlying cause. All 3 agree Levaquin caused my current problems.

“I can't go back to yesterday because I was a different person then.”
― Lewis Carroll, Alice in Wonderland

I have decided that Levaquin is the perfect perpetrator of a crime. It leaves no evidence behind, just the damaged body. What makes it more frustrating is that it can be totally invisible. To others, I look “normal” even healthy to some. I have had comments even within the fluoroquinolone community, that I look “healed”. I would think, they of all people would know how you look on the outside, can be deceiving of how you feel on the inside. Very few see me on days where I cannot get dressed because of fatigue and pain. When people see me, it is because I am having a better day, and I still want to look my best. Just because I put on make-up, wash my hair, does not mean I am healed. It is the double edged sword of an invisible illness.

Fatigue is still one of my most limiting factors. I have two types: Central fatigue, meaning my overall energy level is decreased to the point it can be debilitating. The second is muscle fatigue, where my muscles cannot maintain performance in an activity, especially repetitive ones. They become sore, weak, and shaky causing me to stop what I am doing. Driving, unloading dishwasher, folding clothes, washing hair, stairs, even stirring a pot of food are just a few examples of what can be a problem. You can imagine this makes it difficult for me to feel I have much of a productive day. Some disorders cause both, some disorders may only cause one of these types of fatigue. It wasn't until I read this article did I realize how complex the problem of fatigue can be to medically solve. Fatigue in neurological disorders

I have been taking my "mito cocktail" of supplements now for 3 months and it has helped my central fatigue significantly. I now feel like I can get up and do something. However, nothing seems to help the muscle fatigue, so that continues to be a limiting factor . I introduced each supplement slowly, so to be aware of any problems each may cause. The supplements that were suggested to me by Dr. K include:

L-Carnitine 330 mg , 3 times a day (this is prescription strength)
            Alpha Lipoic Acid 300 mg twice a day
            Coenzyme Q10 600 mg a day
            B2 (Riboflavin) 100 mg a day
            Creatine 5 grams a day

So far, so good, the only supplement that she suggested that I have not begun is creatin.

I have had many emails, some asking if I believe I will be healed. The answer to that question is a difficult one, nor do I think it can be answered with certainty. I will admit, since my 2 year mark is fast approaching, I am becoming less hopeful. However, I am so much better than I was those first 6 months, and for that I am very thankful. I am learning to adapt my life, to accommodate for the symptoms I have been left with. I drive with hand controls; I take frequent rest breaks; I leave the heavy household duties for others in my family; I don’t over plan my day; and if I am feeling wiped out, I make sure I rest.

"Would you tell me, please, which way I ought to go from here?"
"That depends a good deal on where you want to get to," said the Cat.
"I don’t much care where--" said Alice.
"Then it doesn’t matter which way you go," said the Cat.
"--so long as I get SOMEWHERE," Alice added as an explanation.
"Oh, you’re sure to do that," said the Cat, "if you only walk long enough."
(Alice's Adventures in Wonderland, Chapter 6)

When I started this blog, I thought it would only be for a year. I would document my journey, what I did to get better, and then wrap it up with success. That has not happened yet. My voyage has taken me down paths I did not intend. I have become an advocate in the fluoroquinolone community, a co-moderator for one of the largest online support groups, began volunteering for www.saferpills.org, and work daily to help others who are just now starting their own journey through an adverse reaction. Is this the life I had planned? Certainly not, but who does have that kind of life which they planned, with absolutely no bumps or detours along the way. The best I can do, is make the most of what I have now. So, for now, I will continue with my daily “cocktail”, keep advocating, and take one day at a time. For you never know what healing a day can bring.

Thanks for reading!

The Mighty Mito ~ Part 2

2011-12-09T12:17:00.001-05:00

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)

2011-11-14T19:58:00.001-05:00

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

2011-09-12T18:49:00.003-04:00

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

2011-09-01T13:02:00.000-04:00

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

2011-08-19T11:22:00.004-04:00

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

2011-07-16T15:19:00.002-04:00

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

2011-06-13T10:11:00.015-04:00

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!

2011-05-09T08:15:00.001-04:00

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

2011-04-25T09:13:00.000-04:00

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!

2011-04-11T09:01:00.000-04:00

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

2011-04-04T10:18:00.000-04:00

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

2011-03-28T13:18:00.002-04:00

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

2011-03-14T09:30:00.006-04:00

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

2011-03-07T08:35:00.002-05:00

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.

The Blame Game

2011-02-14T10:04:00.004-05:00

Who is to blame? This question has entered my mind time and time again. Who do I totally blame for my adverse reaction to Fluoroquinolones? This can be a loaded, and unfortunately, not a clear cut answer. Well, at least in my case. I knew I had several “mild” reactions to medications when I entered that immediate emergency care facility. I could remember them all, except for one. I was so disoriented that I could not recall the name. The physician rattled off several suggestions, but none sounded familiar. Ugh! I should have made a list and kept it in my purse. (Fault- mine)

The nurse later entered my “cubicle” where I had already received two bags of IV fluids. I was feeling better, and could have a somewhat lucid conversation now. He started my third and final bag of fluid, and injected an “antibiotic” into my IV. He had been present when I stated I had a reaction to an “unremembered” medication. He did not mention the name of what he was giving me. I immediately started feeling horrible. I started having the most severe headache I have ever felt in my life, which is saying a lot since I have a history of migraines. I could literally feel the pain move down my spinal column and into my hips. I started shaking uncontrollably as if I had a high fever. After checking my temperature multiple times, it was determined I did not have a fever. The pain started moving down my legs, into my arms, sternum, and jaw. It was unbearable. Why was I suddenly feeling worse when, I had been getting better? The staff’s response was that my body had been through a lot from being so sick, it was most likely that. “What medicine did you give me?” The answer was, “Levaquin”. I knew immediately that was the medication I could not remember. Why had they not SAID the medicine BEFORE entering it into my IV? (Fault- nurse)

Believe it or not, even though I was having difficulty walking, and I obviously was turning for the worst, they discharged me home. I was in unbearable pain that night. I returned the next day to the same clinic. I mentioned to a “new” physician of what occurred the previous day, and that I had been given Levaquin, a medication which I had a mild reaction from before. I described that I felt like I had been hit by a car. Anything bound by connective tissue was in extreme pain. I also had a rash covering my neck and chest. The doctor questioned why I was given Levaquin in the first place, and stated he did not see that it had been needed. My WBC count was up because of the food poisoning, so no need for the antibiotic. He proceeded to order IV Prednisone and non-steroidal anti-inflammatory to help counteract the reaction. I started feeling somewhat better during the IV, and thought it was helping. I returned home, with a prescription of more prednisone and Zantac to help stop the absorption of the Levaquin by my body. However, I started feeling even worse. I now felt like I was being burned by acid from the inside out. It was the most excruciating pain I have ever had. Since it was still the weekend, I once again returned to the clinic. But this time I had done some research…..prednisone and NSAIDs are specifically listed on the Levaquin patient information sheet not to use during adverse reactions, because it will make the reaction worse. Steroids cause an increase risk of connective tissue damage, and NSAIDs cause an increase in Central Nervous System reactions. I asked this same doctor about this new revelation, and his response was, “That is only for 70 year olds, not for people like you.” He once again gave me a shot of NSAIDs, and I stupidly accepted his answer. (Fault- physician) (Fault- me for stupidly believing him)

Thank goodness the weekend was now over, and I made an appointment with my general physician. By this time the uncontrollable crying had started. I could hardly tell her what happened over the weekend through the hysterical sobs. I was in SO much pain! Somehow she was able to get the gist of it, and I am convinced she now thought I was crazy. I showed her my prescriptions. She fortunately was educated enough in Fluoroquinolone reactions that she knew I needed to immediately stop the prednisone and NSAIDs. She instructed me to keep the Zantac to interfere with the absorption of the Levaquin. She gave me a prescription of Hydrocodone for the severe pain. (Thank God!) She had never seen a reaction like mine, and thought something else was also an underlying cause. I will stop here with this recount, because if you have been following my blog, you know the doctor visits started, and I now have been diagnosed with large and small fiber peripheral neuropathy.

But for most, the blame game does not end there. Most often the tables are turned on the victims themselves. I have been fortunate that my neurologist does not blame me, but many others are being blamed for their reaction. Perhaps they were under stress, perhaps they have MS or Fibromyalgia and did not know it, they exercise too hard, or maybe they were predisposed for a neurological problem. The list goes on and on. FQ toxicity victims are not getting support from their physicians to help their fight against the drug manufacturers. One recent post on the FB Fluoroquinolone group, describes it this way. “[It is like] a rape that you report and no one believes. There’s evidence, proof, but they turn a blind eye. The rapist is free to keep raping over and over. Everyone thinks that the one you are blaming is innocent....he hasn’t done it to other people. Why would he do it to you? So, they let him roam around....and he will attack, again & again!!!” A response back, “Yes. And the victim gets blamed for everything.”

I cannot end this post without mentioning, in my opinion, the two most important parties in this incident, the FDA and the drug companies; (Johnson & Johnson makers of Levaquin, and Bayer the makers of Cipro.) In my opinion, physicians have no intention of harming their patients. They do their best with the knowledge they have. However, I do blame the drug companies for poorly educating physicians, or the pharmaceutical reps that are pushing these medications. Doctors are not educated in what to do for adverse events, which in my case made the situation worse. They push the pharmaceutical reps to convince the doctors that these are great meds, even for minor bacterial infections. In reality, these meds were originally intended for severe infections in which other antibiotics did not work, or for treating anthrax or malaria. There is a black box warning for Fluoroquinolones for tendon ruptures, but I am finding that most never were given information about the warning. If you receive an IV, as I did, no paperwork or warning is ever given to you. (Fault- drug companies for not educating proper use and what to do for adverse reactions).

The FDA mission is to protect the public from unsafe drugs. However, they are doing nothing about the daily reports of adverse reactions. Many of these medications are being severely restricted or banned by foreign governments, yet they are the number one prescribed antibiotic in the United States right now. Just look on askapatient.com to see how often severe reactions are reported on that website alone, and that does not include the people who do not find that page. There are 2600 court cases pending right now for tendon ruptures alone. These do not include people that have been affected in other ways, like me. The problem is the FDA acquires a lot of funding from pharmaceutical companies. This causes a huge conflict of interest; therefore medications are not pulled from the market. The current black box warning is only as a result of a lawsuit by the consumer group Public Citizen against the FDA, for ignoring long standing evidence that FQs cause tendon ruptures. (Fault- FDA for not protecting us)

So, who is to blame the most? It certainly is not me or any other victim of Fluoroquinolone Toxicity. It is easy to play the blame game; point fingers at the victims, the doctors, the pharmacist, or the nurse. But in reality, it is the drug company that educates all of these people and the FDA that is supposed to protect us. That is who I place the blame on the most.

The Psychology of It All

2011-01-31T10:10:00.007-05:00

It has been just over 6 months ago that I was floxed for a second time. I now realize that my previous symptoms were from my "mild" reaction in May of 2009. So in reality, I have been dealing with this now for one and a half years. After my second reaction, I remember reading the posts on all the Fluoroquinolone information pages, praying that I would have a quick recovery, that I would not have a story like all of the others. That unfortunately did not happen, but at least I have “met” a lot of strong and courageous people who are fighting this same battle daily.

The psychological impact of Fluoroquinolone Toxicity, or any medical condition for that matter, is just as important as the physical aspects. This is a difficult topic to share, but yet I feel it is very necessary. It seems it is easier for us to share our physical ailments. Sometimes it can be very daunting to think this could affect the rest of my life, and the fact that the damage still may not be completed can be overwhelming. It is hard not to replay that day in my mind when Levaquin was inserted into my IV, and to think about the trauma it is doing to my body. I get anxious when I have to drive by the facility where this happened to me. To make matters worse, it is by Target. Why oh why, does it have to be by TARGET!! The constant doctor’s appointments, wars with insurance, people who don’t believe, add to this. I now find myself scared of medicine---traditional medicine, alternative medicine, integrative medicine, you name it, and I have a fear of it. Fortunately, my neurologist understands this and does not pressure different treatments on me. In fact, he too is worried how my body will not respond to things now.

Some days I feel as if I am in a time warp. I feel very disconnected from myself and everyone around me, as if I am watching, but not really participating. I am sure anyone who has gone through an illness, death in the family or any traumatic event can relate. Usually that feeling goes away in a short while, and you eventually return to your normal way of life. However, what if you are being reminded daily of this event, by the physical ramifications or even from the grief? I feel like such a hypochondriac at times. I see other people post symptoms that they are having, and I think, “I have that!” and the thing is, I really do have that! I feel at times I am walking around with Eeyore’s big black cloud hanging over my head. How do you make the event that is so “large” in your mind, diminish so you can move on with your life?

I have a difficult time in doing anything by myself, some for physical reasons, and others because of the fear of what might happen. The fear of pain, in itself can be discouraging. If I do too much, then I am left to suffer with the consequences. I have this anxiousness, which was there before, but now it has magnified. It is exaggerated by not knowing how to plan for tomorrow, next week, or next month because I don’t know what I will be physically capable of that day. I get discouraged, and start to doubt my body’s ability to heal. However, I am trying hard to push myself to get out more, to mingle and interact with others. I find this can help take my mind off of the pain, even if it is for a short while.

My body and its capabilities are now different, so I too have to change my future plans. However, it does not mean I have to give up. I have to learn to move on with this new life I have been given. I am not trying to make it seem simple. It is not, by any means. It is a daily struggle. Some days that struggle is more difficult than others. On those very frequent days, I think I sound like the Queen of Hearts being demanding and barking orders to my family. “Off with their heads!” I have to learn that patience is my friend, for I truly think the only healing cure for any of this is time. It is o.k. to have these feelings; it is our normal human response to any tragic event. Nevertheless, I have decided I have to step away from the grief, not be consumed, and have a new vision, new priorities. I have two choices with this war within myself, continue the fight or surrender. I have decided I like the first option best. But, winning the war requires embracing the enemy and facing the psychology of it all.

Advocacy: You'll Never Walk Alone

2011-01-24T11:03:00.000-05:00

I have been trying to figure out my purpose in all of this. Then it dawned on me. I have become a Medical Advocate. I have been placed in this role several times in my life, not realizing that my life always seems to steer this way. As an Occupational Therapist, I was an advocate for my patients. I was a therapist that always explained things in full detail to my clients, and often gave them educational material for support. I wanted to make the transition during this difficult part of their lives as painless as I could. It was up to me to speak for them in our weekly rounds, to make clear their medical needs. Did they need a longer length of stay? Was further care needed for them after discharge? Did they need assistive devices? I had to document my thoughts well for insurance and for the attending physician, because if their needs were not well articulated, it could affect the life of the person for which I was advocating.

I left that role when my children were younger, feeling the need to be with them during their impressionable years. Little did I know that I would be once again thrown into the responsibility of medical advocate. In 2006, my daughter was diagnosed with Epilepsy. I was horrified by the diagnosis, but I think I was even more horrified by how I was told. She had been given an EEG prior to seeing the pediatric neurologist. It was just my daughter and myself at the appointment. We had never met him. The doctor arrogantly strolled in the room, never made eye contact with us, and loudly proclaimed that she had epilepsy, and her EEG was severely abnormal. She would most likely not outgrow it, and she needed to be put on medication immediately. Here is the prescription; you need to make another appointment. He left the room as quickly as he had entered it. I was dumbfounded. I could not believe the harshness of it all. My daughter, who was 8 at the time, did not understand his words, but she certainly could tell something was wrong by the shock on my face. I could not believe I was not given any educational material. Not a nurse, a social worker, or any one came to explain to me what was actually being said. I could not believe we were being thrown into this alone. I was a therapist with some understanding of neurological problems, and yet I still felt I needed education.

I, of course, poured myself over the computer, found wonderful support groups, and met other moms that were dealing with the same situation. They shared their stories, which made me realize I really wasn’t alone. My daughter went 3 years battling getting control of her seizures, mostly because the doctors would not listen and kept prescribing more and more medications that were wrong for her. We went through 4 neurologists until we finally found one that listened. However, we came to another road block. We had finally found the right medication, but insurance refused to pay for it. I fought tooth and nail to get the one medication that finally helped to be covered by insurance. I found a well worded letter can still do the trick. She has now been seizure free for 1 year and 7 months.

I did not want others to have to go through what I had, with the feeling of nowhere to turn. I took the lead from the mom’s that had shared their stories with me, so I started a carepage for her. I was advocating for her, yet helping others along their journey too by documenting our successes and failures.

I was beginning to think it was time for me to possibly return to work, or find a volunteer job. However, my life once again had other plans. I had my severe adverse reaction to Levaquin, and here I am again. I am a medical advocate once more, this time for myself. The hours of research, doctors appointments, bills piling up on my kitchen desk, and the insurance fights have begun. As you can see I have again decided to document my trials and tribulations. I want to warn others of the dangers of Fluoroquinolones, and yet help others going through this know they are not alone. I want to share personal stories, because those were the ones that seemed to help me most with my daughter’s diagnosis.

Not long ago I watched HBO’s Temple Grandin, about a remarkable woman’s journey through Autism. Two scenes in particular really moved me. One, when Temple and her mother attended an Autism conference; Temple proudly stands up and tells the audience what it is like for her to have Autism. You could see the hunger of the other parents wanting to learn from her. She owed all of her success to her mother’s advocacy and pushes to allow Temple to fit in. It made me feel proud as a fellow mother and advocate for a daughter. I think I even sat up taller on the couch during that part.

The second was at Temple’s college graduation. She had overcome so many obstacles and was speaking in front of all her fellow graduates. With the utmost confidence, Temple starts singing “You’ll Never Walk Alone”. To me, it explains perfectly the reason why I have been a medical advocate during my career, as a mother and now for myself and others with Fluoroquinolone toxicity. I want others to know, you’ll never walk alone. This is why I write my blog.

You'll Never Walk Alone

When you walk through a storm

hold your head up high

And don't be afraid of the dark.

At the end of a storm is a golden sky

And the sweet silver song of a lark.

Walk on through the wind,

Walk on through the rain,

Tho' your dreams be tossed and blown.

Walk on, walk on with hope in your heart

And you'll never walk alone,

You'll never, ever walk alone.

Walk on, walk on with hope in your heart

And you'll never walk alone,

You'll never, ever walk alone.

I've Got That Floxie Feeling

2011-01-17T08:06:00.002-05:00

Some people call it ‘brain fog’ or ‘fibro fog’. I call it the “floxie feeling” (derived from “floxed” used by those with Fluoroquinolone Toxicity). I have days where I literally feel drunk and feel it is unsafe to “operate heavy machinery”. I can’t find any rhyme or reason to it. There have been no medication changes, lack of sleep, or foods that seem to be the culprit. On these days of feeling inebriated; I stumble when I walk, drop things incessantly, my face feels numb, and cannot have a single clear thought. It feels as if I have been to the local bar and kicked back more than just a few. Believe it or not this feels just as frustrating as days when my pain is unbearable.

On normal days, I already have difficulty with my memory. I can’t think of people’s names I have known for years, word finding problems, and can’t multi-task. I used to complain “pre-floxing” that my first child took half my brain and the second took what was left. I THOUGHT I had memory problems. Now I KNOW I do. It is all on a different level now. I do really dumb things now, like give my husband's birthday for myself when going to vote. Luckily I was able to laugh it off when the lady said VERY loudly, “This isn’t your birthday!” in front of both strangers and friends.

My cognition has improved tremendously from those first few months though. At that point I could not follow a television show; unless it was one I had seen a million times, which pretty much limited me to Disney’s Hannah Montana or Wizards of Waverly Place. Forget reading at that point. I could not even complete a sentence, and would have to re-read the simplest statements to even begin to comprehend it. Even though I could not read a sentence, oddly I could compose one. Of course that was after what seemed like hundreds of rewrites and corrections. I still can’t read complex information. I often just throw it to my husband and say “Read this, and then tell me about it.” My writing is still better than my comprehension. I know somewhere along the way of my OT studies I learned the reason for this. I know that comprehension and expression are in different areas of the brain. I guess one was spared more than the other for me.

'Never imagine yourself not to be otherwise than what it might appear to others that what you were or might have been was not otherwise than what you had been would have appeared to them to be otherwise.'
'I think I should understand that better,' Alice said very politely, 'if I had it written down: but I can't quite follow it as you say it.

Math, oh that is something else all together. My daughter has given up asking me for help with her math homework. I cannot do even simple computations. I have to rely on my twelve-year-old to get me through a game of Monopoly. Is this the right change? Should I buy this? How much do they owe me with all of the utilities? One night at my daughter’s basketball game, the coach asked me if I would collect money of those entering. I literally felt panicked inside. I can’t even count change anymore! On top of that I was to remember the faces of those who had paid versus those who had not. Not a great task for someone with no math or memory skills. Couldn’t they have hand stamps?? I know- I will get my husband to sit with me and make sure I am doing it correctly. The next thing I know he is asked to keep score. Well, there goes that plan. I somehow made it through, although it was not the easy task it should have been. I am sure I made quite a few mistakes, and if I remember correctly, got a few confused looks. I wish I could wear a sign around my neck for situations like this. “Please be kind to the woman in the chair. She lost her quick thinking skills due to Levaquin.” It is one of those “invisible illness” misfortunes.

My family is starting to catch on to this “floxie feeling”. Don’t ask Mom to drive anywhere. Leave really big notes on the kitchen counter such as…."Mom do laundry today!" Chime in at the doctor’s office when they want to know a birthday. Be ready to fill in the blanks when Mom stops mid-sentence and can’t remember a word.

For some reason when I have this really bad, I sing to myself, “You’ve Got that Floxie Feeling” to the tune of “You’ve Lost that Lovin Feeling”. Try it, it works.

You’ve got that floxie feeling,

Oh, that floxie feeling,

And now it’s gone, gone, gone, oh oh oh.

Well, at least I was left with some sense of humor.

New Year, New You

2011-01-10T07:24:00.006-05:00

'I could tell you my adventures — beginning from this morning,' said Alice a little timidly: 'but it's no use going back to yesterday, because I was a different person then.’

A new year has been proclaimed the start of new beginnings. I am usually one that always jumps on this bandwagon. I am a big organizer, I love organization, and every year this is usually a New Year’s resolution for me. I have to get everything back in order, which somehow lost its tidiness the previous year. This year, in my mind, it is no different; the storage room, the closets, the kitchen. Ugh! The kitchen! This has really lost its orderliness. Having reduced power in my house because of my Levaquin reaction has really taken its toll on my kitchen. I am so thankful my husband has stepped up and has helped out in this area; unloading the dishwasher, being the sous chef to my executive chef. However, my kitchen has taken its toll. Nothing is where it should be. It is driving me absolutely crazy! Believing I can do all of the normal undertakings like every year, I decide the kitchen is the first job to be tackled. I found out quickly my typical resolution is just not going to happen this year. Usually a thorough organization of my kitchen will take a day. This year, our small pantry took a day. Not because it was so terrible, our pantry is rather small, but because my body will no longer do those type of jobs. Throwing away out-of-date food, getting my spices in alphabetical order (again), and putting everything back in its proper place completely wiped my arms out. This was just another reminder that my endurance and strength are now quite pathetic.

This leads me to my other typical pledge for the year, getting in shape. This has an all new meaning for me this year. I am (or was) a regular exerciser and have been for the past 10 years. Strength training has always been my favorite choice, but I would do just about anything to get out of aerobic activities. As some of my close followers may know, I started having a difficult time with exercise a few months after receiving Levaquin in May, 2009. From that point on, I was getting weaker in my workouts instead of stronger. My workouts had gone from 1 hour 4 to 5 times a day to barely making it through a 15 min routine. I was tired all of the time. I, of course, never knew what the culprit was. Even my doctor wanted me to be tested for MS. It wasn’t until my second reaction to Levaquin in July, 2010, that the pieces were put together. My first “mild” reaction had already started causing havoc on my peripheral nerves. I know now that was the cause of my symptoms- peripheral neuropathy. The second “severe” reaction in July absolutely did them in. So, this year I am starting from rock bottom. I am determined to get my endurance up. I have started walking on the treadmill. I am able to walk a meager .3 miles at a big whopping 1.2 miles per hour. I used to walk my dogs 4 miles a day in about an hour. At this rate, it would take me 4 hours to do that now. My legs will not move any faster. If I attempt to walk faster, my legs feel as if I am walking through concrete and protest in pain.

I took a break from my blog for the holidays. I had planned on returning to it much sooner than I did. However, I have had a bad relapse of symptoms. Problems that had gotten better or even disappeared are back. I have read from others that this is typical. Most report that they have a relapse after about 6 months or so. I am holding true to that description. It has been exactly 6 months since Levaquin was poured into my veins from that IV. Oh, how I wish I could time travel back to that day and stop it. It is amazing how something that took only a few seconds, has now changed my life. As I peruse my list of symptoms, only 4 have not returned so far. The myoclonic jerks, heart racing, decreased balance, and insomnia have improved. In fact, I have gone from unable to sleep more than 2 hours in 24 hour period, to wanting to do nothing but sleep. I do still occasionally have insomnia if I am in great pain, but nothing compared to the beginning. The joint popping had completely disappeared, and now every joint pops, grinds, and groans. I feel it the most after sleeping. When I get out of bed, I literally feel every vertebra in my back and neck pop as do my ankles, shoulders, elbows, knees and hips. My hips grind as if the synovial bursae is just no longer there. The weight fluctuation has stopped, but unfortunately on the high side. All of this inactivity has taken a toll on my weight, and I am now the heaviest I have been sans pregnancy. So, you guessed it, another resolution to try to get this weight off the best I can. This will be difficult since I still can’t move very well.

I am not sure what has caused the back slide. Is it just the normal course of Fluoroquinolone toxicity? Is it all the bad eating habits I adopted during the holidays, or simply the lack of routine? Is it the natural course of peripheral neuropathy? I am not sure of the answer, but I am determined to try to stick to my goal of a daily short walk on my treadmill. I have read that activity will increase blood flow to hopefully encourage repair of the nerves. I also know the loss of these extra 30 pounds will make it easier on my joints. I am hoping pledging to the world these things; I will comply with these declarations. After all, as the world has professed, a New Year means a New You. Yeah, right!

Update: My lactic acid blood test came back normal. I am not sure what this means for my next course of action. I also am not sure if this will totally rule out mitochondrial dysfunction. I am not scheduled to see my neurologist until the first of March. I have updated my symptoms list, and also added some new links to the other pages.

Thanks for reading!

Merry Christmas and Happy Holidays!

2010-12-16T19:37:00.006-05:00

My kids are off for the holidays starting tomorrow, so I have decided I am taking time off from my blog as well. I will return after the New Year. Thanks for all of the encouraging emails and messages. You are all an inspiration to me. So many of us are going through this battle together. I hope everyone has a happy holiday and a pain free New Years.

Thanks for reading,

Lori

A Revisit With the Mad Hatter

2010-12-13T09:44:00.006-05:00

Lots of news this week! I met with the Mad Hatter again, that is my neurologist for those who are just now following. I am not sure how he would feel if he knew I referred to him in this way. He got this term of endearment when I met him the first time. He is the kind of doctor that starts talking in circles; one train of thought leads him to another requiring me, as his patient, to round him back in and to the topic at hand. It is this kind of thinking though that has me like him. He is a doctor that loves a good mystery. What a coincidence, so do I; therefore, it makes us a good pair. He spent well over an hour with me as if he had nowhere else to go, discussing Levaquin and different theories of what is going on inside of my body. He likes the fact I am actively researching information and sees this as a positive attribute, not a negative one as many doctors would.

He proceeded to tell me that I did indeed have both large and small fiber neuropathy with sensory, motor, and autonomic involvement. What does that mean? My peripheral nervous system is now a mess. The good news- the large fiber nerves, those with myelin, usually repair themselves. To what degree is unknown until it happens. The large fiber nerves control the skeletal muscles. I already see improvements in my right foot where my large fiber nerve (peroneal nerve) is damaged. I can move my toes more and also have increased movement in my ankle. I can heel walk now. Not that heel walking is a very useful thing. I don’t exactly go around walking on my heels, but it does show improvement. My cane has also not been used now for the past few weeks.

The bad news- small fiber neuropathy usually does not improve, and that is what is responsible for all of the burning pain I have in my arms and legs. I asked him about my other symptoms- numbness in my feet and hands, the constant feeling of a low voltage current running through my body, freezing feeling of hands and feet. Yep, all related to small nerve neuropathy. More bad news, small fiber nerves also control cardiac and smooth muscle (autonomic function). More questions- Is that what is causing everything just feel “slow” in my body? Is it causing the digestion problems, the no sweating, and the changes in my blood pressure, resting heart rate, and temperature control? Yes, all small fiber. Oh that is not good! But, you know I felt relieved in a way. It was all validation for what is going on.

'Would you tell me, please, which way I ought to go from here?'
'That depends a good deal on where you want to get to,' said the Cat.**
'I don't much care where —' said Alice.
'Then it doesn't matter which way you go,' said the Cat

All of this does lead my neurologist to ask more questions. Why are my muscles as weak as they are and fatigue so easily? Why was my EMG abnormal? These are signs of large fiber neuropathy, but that only shows up on the nerve conduction test in my leg. Small fiber neuropathy, which I have everywhere else, should not cause this much weakness. One theory of Fluoroquinolone Toxicity is that it causes mitochondrial dysfunction. I asked him about this and it really peaked his interest. In a VERY simplified explanation, the mitochondria are the energy source for our cells. If they are not working correctly our cells have no energy; thereby our bodies have no energy. They are basically little engines in each cell that are responsible for oxygenation and getting rid of the cellular waste: lactic acid, toxins, etc. When the mitochondria don't work properly, it causes pain due to lactic acid build up and exhaustion since the cell is bogged down with waste. This could account for the muscle weakness. He has ordered testing for this, blood work that could show if I have an increase in lactic acid in my body. There is a lot of research going on right now about mitochondrial dysfunction. The thinking used to be this only occurred in children, but now scientist are realizing this happens in adults as well and could be the source of many disorders.

So we ended our hour long meeting with the understanding we will look at the mitochondrial avenue. Then we will proceed from there. He has already informed me to count on meeting my deductible with him next year because he has some other things he is interested in looking into if the mito theory does not pan out. I have been so fortunate to find this doctor. He may not find the specific changes that Levaquin has done to my body, but he is going to darn well try. He wants to know- Did Levaquin cause one big explosion in my body and I am left dealing with the aftermath, or did it cause an explosion that has now started a progressive disorder, or one that will not allow improvement? That is a question only time may tell.

In the news front two large things happened that could affect my family’s life. There was a break through with stem cell research in Epilepsy and Johnson & Johnson lost their first Levaquin trial! I have links below to those articles. I have also posted links for Small Fiber Neuropathy and Mitochondrial Dysfunction.
Thanks for reading!
Johnson & Johnson Loses First Levaquin Trial
Stem Cell Research Holds Promise For Epileptics

Small Fiber Neuropathy--Wikipedia
Small Fiber Neuropathy--Cleveland Clinic

Chronic Fatigue Syndrome and Mitochondrial Failure
Drug Toxicity and Mitochondrial Dysfunction

I will post these links on my Levaquin and Peripheral Neuropathy pages so they can be easily accessed later.

My Grown-Up Christmas List

2010-12-06T08:17:00.002-05:00

Christmas following the aftermath of Levaquin, it definitely makes for a different holiday experience. Instead of decking all of our halls, we have minimized our decorating. We probably would have done even less, but the protests of our kids over ruled. Our extent of decorating depended on their willingness to help. My son placed the lights on the shrubs and daughter set up the half-lit reindeer. After almost 15 years of use, I think the reindeer have seen better days. We have convinced ourselves that from far away they look o.k. This may be it for our 3 lighted deer. After this Christmas, I think it is time they meet the big garbage truck in the sky. Oh well, one less thing to set up next year.

Our family as a whole is having a hard time getting into the Christmas Spirit this year. I think my not having energy to do anything, has drained everyone else’s. We are finding we have to modify some of our traditions. Christmas shopping has been different, but yet fun. As I sat on the couch with my laptop and my husband across the room with his, we hit the Black Friday sales online. In just a few hours, from the comfort of our home, all shopping was done in just a few clicks. Hey, how come we haven’t always done our shopping this way? It felt good having it all done so quickly and no crowds. Now all of those brown Amazon packages are starting to arrive. That was easy!

My family’s Christmas list is pretty typical of past years, but mine has changed quite a bit. I now am asking for boring “old people” gifts. An electric throw to help my sore muscles during this cold weather; knives with large handles so that my weaker hands can grasp them; a bleacher seat to endure sitting while watching my son wrestle and my daughter play basketball; warm shoes since my feet feel like they are in snow all of the time; and the perfect pair of socks. Who would have thought that socks would be so difficult to find. I feel like I did when I was a small child and complained about the seam at the toes. The perfect pair of socks has to be soft, yet warm, not tight around the ankles, and have absolutely no seams. This is a hard thing to find. My husband says he has given up, and I am on my own for that one.

A few weeks ago, I was sitting in the car as my husband ran into the store for a few quick items. I caught myself watching people walk across the parking lot, seemingly effortlessly. I realized I was jealous. I wish I could move that quickly. I wish my walking was that smooth. How I envy the world without pain, being able to do the things you do, not having to care about the pain you are feeling or the pain you will feel afterwards. With Peripheral Neuropathy, pain follows you everywhere. It totally encompasses every thought, it invades every conversation. It goes to the store, to bed, to dinner, to church, everywhere. That is what I would want most for Christmas, to be pain free. But while I am at it, I want the same for others in my family that suffers the same way. My mom suffers from Parkinson’s Disease and Peripheral Neuropathy; Dad has Peripheral Neuropathy, Myasthenia Gravis, heart disease and Diabetes. My sister recently had bypass surgery and has many other unknown medical complications. In a nutshell, my family is a mess and I am convinced would be an interesting scientific study. Why so much rare diseases or adverse reactions in one family?

My mother recently joined Facebook, and I saw this as a post from her as prayer request to one of my cousins. It brought me to tears. (I have removed names to protect the innocent)

You know, my first thought is for healing, but most times I think we really know that God doesn't mean for us all to be healed. I think I would ask ...that we keep God uppermost in our hearts and that He would grant us the courage and strength to live with the burdens that are ours. For (T), if I could, I would ask relief from the constant and brutal pain he endures...I would ask for at least some periods of ease from the pain. I would also ask for strength in his legs so that he may have the ability to move about in our home with more ease. And I would ask for me, increased strength to get through the day so that I might be a better helper to (T). And when you pray, please include (LB) and (LM)—(LB) is not yet stable from her heart surgery and (LM) doesn't know what her outcome will be. She, too, is in constant pain and suffers incredible weakness. Oh, and please include (A) in your prayers as he prepares to go to Paris Island on Dec. 20, to begin his basic training for the Marines. We pray strength and courage for him as he begins his career in the military. Oh, and I need to be able to go to bed and sleep at night, my body aches from tiredness and yet my mind fights sleep! WOW, I really let you have it didn't I! I asked much--but I know from Him much is given. Love you, M.

Yep, that pretty much sums it up Mom. That is my grown up Christmas list!

How Are You?

2010-11-29T09:36:00.002-05:00

“How are you?” Boy! That is a loaded question. It is funny how I react differently now to the typical greetings that everyone uses. I am even so programmed in giving the typical pat response “fine,” that I responded that way to my doctor during one of my previous appointments. He hurried into the room where I had been waiting for him. “Hi, how are you today?” “Good,” I answered without skipping a beat. He stopped and looked at me with the questionable look of doubt. “Really, you are feeling good?” Oops, I guess I better be a little more honest with my doctor. “No, not really,” I chuckled, “I am just used to saying that. I am actually in a lot of pain, and not doing well at all.” That is more like it, not smart to answer your doctor like you do everyone else.

I have been having a hard time with this question. It really is a loaded one. I could say “fine” or “good”, but then everyone thinks that I must be completely healed. I could go into how I am really feeling, but I don’t think they want to hear about all of my aches and pains that I am probably hiding behind my smile. "Some days are better than others;" I have decided this should be my general response. It lets them know that today I am doing well enough to be out and about, but I don’t necessarily feel that way every day. Heck sometimes I don’t feel that way every hour.

`Who are YOU?' said the Caterpillar.
This was not an encouraging opening for a conversation. Alice replied, rather shyly, `I--I hardly know, sir, just at present-- at least I know who I WAS when I got up this morning, but I think I must have been changed several times since then.'

“Well, you look good; you don’t look like you are sick.” I know everyone has good intentions when these common phrases are used. I have used them too, hundreds of times. It is odd how I read more into these good-natured remarks now. They also lead to a cascade of different emotions. Do they not believe me? Do they think I am making up that I am in constant pain? I have gotten better with these statements. They used to really bother me when my body was first injured by Levaquin. I have finally realized it is not the person sending these remarks that is causing these emotions. It is me! I am causing them. I have this deep need to make sure everyone knows or understands what has happened to me, to feel believed. I can’t let go of the doubt I feel others might have. It is my control-freak inner self.

You know what? Not everyone is going to understand or “get it”. I have finally understood this revelation. This eye-opener of what is causing these emotions has now allowed me to accept them for what they are. They are well wishes sent by people who care. They may not have the need to know every detail, but they are concerned enough to ask. Now I realize it is nice to hear these compliments. It is good to know I don’t look as bad as I feel. So bring on your “How-are-you” and your “You-don’t-look-sick” remarks. I now know how to accept them, and will proudly, and hope gracefully, embrace them.