Two Year Floxiversary: Lessons Learned

`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?

___________________________________________________

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

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!

30 Things About My Invisible Illness You May Not Know

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thanks for reading!

How Are You?

“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.

The Cheshire Cat

“Well! I’ve often seen a cat without a grin,” thought Alice; “but a grin without a cat! It’s the most curious thing I ever saw in all my life!” (Lewis Carroll, “Alice’s Adventures in Wonderland”, 58)

This week I have joined 226 other bloggers on "Bloggers Unite"”, for Invisible Illness Awareness Week..  Nearly 1 in 2 people in the US have a chronic illness and about 96% of it is invisible.

Invisible Illness is a curious thing.  It is much like the Cheshire Cat in Alice in Wonderland.  Most of the time you see the grin, but not what is behind it. That smile can look absolutely perfect, yet it can hide a great deal of pain.  I can tell before I even get out of bed what my day is going to be like.  This morning, my right arm did not want to move.  Uh oh, it’s going to be one of those days.  I hobble to the bathroom, and then try to make it down the stairs without my 3 dogs knocking me down.  Where’s that cane?  Darn! I left it down stairs last night.  My right foot is the worst.  It screams with pain—mostly it feels like it is being burned by a blow torch, other times it feels like acid is burning me inside.  The weirdest feeling is sometimes it feels wet.  I have to look down to make sure I haven’t spilled anything on it.  It is very strange.   As Alice would say, it is “Curiouser and curiouser!”    The pain is a little more bearable during the day, but even so, it never leaves.  It is always there, just like the Cheshire Cat.  The nights are the worst.  The pain consumes my whole body.  I spend most of my time in the bath to help relieve the muscle pain, or in the bed.  I have to take pain meds most night.  Sometimes it works, and other times it just barely takes the edge off.  Last night was one of those sleepless nights.

However, I am just as guilty as anyone not believing or understanding the pain of others.    As a therapist, I knew my patients were in pain, and I could try to sympathize with them, but I know now I never really truly understood.  I wish I could go back in time and explain.  Even in my own family, my grandmother suffered from chronic pain.  Now my father does.  I have looked at people who park in handicapped parking, yet walk into the store.  I usually think to myself, “Why is he parking there?  He can walk fine.”  Now I realize maybe that person is in great pain, and will have difficulty even maneuvering the store.   My husband keeps encouraging me to get a temporary parking sticker.  I am putting it off, because I know I will get those looks now.  However one day, as I was trying to walk into a store, a group of senior citizens passed me crossing the parking lot, because my legs will no longer let me walk fast.  It completely wears me out to go into a super size store.  I now have an entirely different perspective of what these people in my life have gone through.  Unfortunately, I have joined their group.  Like Alice, I want to protest.  I did not sign up for this!

"But I don't want to go among mad people," Alice remarked.

"Oh you can't help that," said the Cat: "we're all mad here. I'm mad, you're mad."

"How do you know I'm mad?" said Alice.

"You must be," said the Cat, "or you wouldn't have come here."

So, like Alice I am here among the “mad” people or in my case the “chronic pain” people.  We often hide our pain behind our smiles.  It is a double edge sword.  We want validation of our pain, yet we want to hide it too. We may not look “sick”, because we aren’t.  It is a very strange concept to understand.  We still want to get dressed and look our best.  Invisible Illness does not discriminate.  It can affect any age, race or gender, or at any inopportune time.  Just because we may "look our best", it does not mean our illness is still not there, lurking, like the Cheshire Cat.