Tag Archives: Floxie

Keep Going

A friend wrote this to me –

Dear Lisa,

I don’t believe I am going to get better, and I don’t know what to do anymore. This feels like a nightmare from which I cannot wake up. I know people say to stay positive, but I don’t know how, especially when, every day, I read comments in the group with people who are several years out, and have not improved. I know people say everyone is different, but after more than a year, I have a feeling I am one of the unfortunate few that never recover. What should I do?

Here is my response –

Dearest friend,

I think that you should just keep going. That’s all that is really required of you, or anyone else – just not giving up. In not giving up you are being hopeful. Eventually, it will become easier to not give up. Eventually, it will be effortless. At least that’s what I hope for you.

I recently got an email from someone who recovered after 8 years. 8 years is frightening, for sure. But she recovered. It did happen.

I encourage you to find something that makes you feel just a little bit better. Maybe that’s sunshine, or funny movies, or acupuncture, or magnesium, or whatever – and do that thing every day until the little incremental improvements add up.

And just don’t give up.

Try to believe that it will get better. It’s okay to not always believe that you will improve. But as long as you’re not giving up, things will change. Maybe they will change for the better. I hope that for you!

That’s what I think you should do. I hope that what I said doesn’t seem to trivialize your situation in any way. I know that it’s scary and I know that fear that it won’t end is normal. I think that just continuing on is difficult sometimes. That’s what I suggest you do though.

Love,

Lisa

Post Script To All:

I wish you all healing, love, happiness, recovery and everything else that your heart desires.  I’m sorry that this whole ordeal happened to you.  I’m sorry for the pain.  I’m sorry for the suffering.  I’m sorry for the fear and the hopelessness.  I hope that it all passes.  I hope that you find your way back to health and happiness.

I know that sometimes it feels like it won’t pass, like you’re stuck in a hole and will never be able to crawl out of it.  It will pass though.  I can’t promise that you will recover completely, or that you’ll get your former abilities, or yourself, back.  But I can promise you that this difficult moment will pass.  It will change.  Eventually you will stop falling down the hole, and you will start to improve; to emerge.

When you emerge, you’ll have all sorts of gifts that you didn’t ever want.  Empathy and compassion for those with chronic, mysterious diseases, patience for yourself, faith in your resilience, etc.  Those things are possible.  They’re down that hole – look around and you’ll find them.

I am inclined to write trite sayings about this, and I’m not sure if they help or hurt.  Hang in there.  It will pass.  Breathe.  And just keep going.  That is my advice.

And know, in every part of your being, in every breath you take, that you are loved.

It helps.  I swear, it does.

Love,

Lisa

flu tox get help you need banner click lisa

I’m a little overwhelmed – it’s okay (xoxoxo) – I just want to let you know

I’m feeling a little overwhelmed.

This isn’t an altogether bad thing.  I’m overwhelmed because so many people are reaching out to me to ask me questions about fluoroquinolones.  This is great – it means that word is getting out about the dangers of Cipro, Levaquin, Avelox and Floxin.  It means that people are reading what I write and connecting their pain and/or chronic illness to their prior use of fluoroquinolones.  Though it’s scary and infuriating for anyone to realize that they have been poisoned by a prescription antibiotic, knowledge is power and I’m pleased to be part of anyone putting together the pieces of their health puzzle, and realizing the cause of their pain and suffering.

There are a lot of you who I need to get back to.  There are multiple emails in my inbox that need responses.  You deserve a thoughtful response and I promise that I’ll get to you as soon as I can.  I’m trying to answer FQ related questions and emails, while also trying to keep my job, maintain my relationships and continue to write.  It’s hard to balance it all.  I’m not doing a very good job at finding a balance right now.  I’m overwhelmed.

My main goal in starting Floxie Hope was to help people through their Floxing experience.  Part of doing that is responding to people when they reach out to me.  I will get back to all of you.  I promise, I will.  I really am sorry for my less than timely responses.  If it has been more than a week and I haven’t responded to you, please re-send me your email – or just send me a note saying that you’re waiting for a response.

When I do respond to your emails, please keep in mind that I really don’t want people to think of me as an expert.  I’m doing my best to put the pieces together.  I’m doing my best to be right.  I’m doing my best to rely on credible research.  But I have been wrong about many things in my life and I don’t want people to take what I say as gospel.  I promise you, I am quite fallible.  (I’m right about fluoroquinolones being dangerous, over-used, ill-understood drugs – that is well established – but I may certainly be wrong about some details and some of my assertions.)  My perception that others are thinking of me as an expert is somewhat adding to me feeling overwhelmed.  It’s pressure.  It’s pressure that I brought on myself, but I do ask that you keep in mind that I’m just a Floxie who is trying to put together the pieces and I don’t know all the answers.

To all of the people who are helping me – THANK YOU!  Thank you to everyone who responds to comments on Floxie Hope.  Thank you to all of those who take time out of their busy schedules to support fellow Floxies on the facebook support groups.  Thank you to my family, friends, coworkers, allies and associates for your support.  You are all appreciated!

I encourage all of you with fluoroquinolone related questions to join a facebook support group.  There are lots of friendly people in the groups who can answer your questions and help you out.  Here are a few of them:

Fluoroquinolone Toxicity Group:  https://www.facebook.com/groups/floxies/

Fluoroquinolone Poisoning Group: https://www.facebook.com/groups/616904631689613/

Surviving Antibiotic Adverse Reactions: Avelox, Cipro, Levaquin, Floxin:  https://www.facebook.com/groups/261231253984443/

That’s enough for this post.  I need to get to some emails.  Or work.

Thank you all for your patience!

All my best,

Lisa

Thank you for reading Floxie Hope!  I hope that all who read Floxie Hope gain insight, support, understanding and, most of all, HOPE.  If you would like to support Floxie Hope, all contributions will be greatly appreciated!  Click HERE to contribute to Floxie Hope.  Thank you!

support button 2 72dpi

Happy Thanksgiving!

Happy Thanksgiving!

I hope that all of you have a wonderful Thanksgiving!  I hope that it is filled with love, laughter, good food, family, friends, joy, etc.  I hope that pain, sickness, anxiety, etc. are not at the forefront of your mind.  I hope that, despite the trials, tribulations, pain and suffering, you have things that you are grateful for and that you can focus your energy on those things, no matter how small they may be.

This Thanksgiving, I am thankful for the following:

  1. My health.  This is the first Thanksgiving since I got Floxed that I am as healthy as I was before I got Floxed.  I was okay a year ago, but I wasn’t 100% yet.  I’m 100% healed now.  It feels good.  I am immensely grateful for my healthy body and mind.  I will never take my health for granted again.
  2. My family.  I am lucky that I have a wonderfully supportive family.  They have always loved me, I have always loved them, and I am incredibly grateful for them.
  3. My friends.  I have gained some wonderful friendships over the last year.  A lot of those friendships have been with fellow Floxies who I only know through the internet.  Even though those friendships aren’t in-person connections, they’re still valuable.  I enjoy the camaraderie that I have with fellow Floxies.  I appreciate that there is a community of people who understand and support each other through the difficult journey of being Floxed.
    1. I am thankful that each of my Floxie friends is making it.  You guys are survivors.  Just putting one foot in front of the other is difficult for many of you, I know.  But I’m glad that you do it.  I’m thankful that you keep going, keep trying and keep fighting.
    2. I’m grateful for my non-Floxie friends too.  Your love, laughter, support and caring mean the world to me.
  4. FloxieHope.  I’m thankful for the success of this blog.  I don’t know how blog success is measured in blogger universe, but in my world, reaching as many people as I’ve reached since starting FloxieHope in June, 2013 is amazing.  I’m thankful that I have a platform through which I can reach out to people, share information with them, and let them know that they are not alone and that they will survive.
    1. I am thankful for all of the people who have written their recovery stories for FloxieHope.  THANK YOU and CONGRATULATIONS on your recovery!
    2. I am thankful for Chandler Marrs of www.hormonesmatter.com  for publishing some of my essays about fluoroquinolones on Hormones Matter.
    3. I am thankful for Arjun Walia of www.collective-evolution.com for publishing some of my essays about fluoroquinolones on Collective Evolution.
    4. I am thankful for everyone who reads FloxieHope.  Thanks.  🙂
  5. I am thankful for the journey.  All of it.  Even the crappy parts that were unpleasant at the time, I’m as grateful for them as I am for the good things.  Without any of it, I wouldn’t be where I am now.  I’d like to think that I’m doing alright now, so I’m thankful for everything that has led me to this moment.

Of course, I’m grateful for a million other things.  One thing that meditation has taught me is that I can find beauty and gratitude in the smallest things, even in the pleasure of the breath.  Those little things that I’m thankful for are too numerous to list.  Please know that I am thankful for them though.

I truly hope that you have a wonderful Thanksgiving!

Xoxoxo

-Lisa

 

flu tox get help you need banner click lisa

The Shame of a Pharmaceutical Induced Illness

I have noticed some shame associated with floxing.  I have felt plenty of shame.  I haven’t wanted people to know that I was sick.  I haven’t wanted people to know how I got sick.  I haven’t wanted people to know that I’m dwelling on being sick or that I’m participating in support groups.  I certainly have felt some shame associated with having mental health issues – a lovely part of floxing.  I have felt shame at how I dealt with getting sick – badly – something that I can at least partly attribute to my mental health issues that were caused by getting floxed.  I have felt shame about the fact that I can’t do the things that I used to be able to do.  I have felt shame about my anger.  I have felt shame about not getting better more quickly (and I am a fast recovering Floxie).  I have felt shame over the fact that I’ve changed, that I’m just different now.   Lots and lots of stupid shame.  I have noticed that other people seem to feel shame about being floxed too.  They use a pseudonym when participating in the support groups, or they ask for things not to be shared with their friends or family members.  Shame, it appears, is part of being Floxed, for many people.

I wonder where this shame came from.  For me, in some cases it was justified.  I really did deal horribly with getting sick.  I was anxious, had psychotic thoughts and sought validation of my sickness and thoughts of my impending death.  My family was worried – justifiably.  And maybe it’s okay to feel a little ashamed of the fact that I’ve dwelled on being sick.  It’s not healthy to have a sickness form your identity.  More importantly, it’s not helpful.  But I really shouldn’t have been ashamed of getting sick, or any of my symptoms.  It’s not my fault.  And the fact that you got sick is not your fault.  And I shouldn’t have felt ashamed at the pace at which I recovered.  My body, mind and spirit healed as fast as they could.  Yours will too.

Shame, I think, ultimately stems from fear that you won’t be loved.  That you won’t be loved as a sick person.  That you won’t be loved as a person who can’t run, or play football, or dance, or whatever.  That you won’t be loved as an anxious person.  That you won’t be loved as a person who isn’t as smart as you used to be.  That you won’t be loved as a tired person.  That you won’t be loved as a Floxie.  So you hide your sickness, your anger, your pain, and you feel ashamed.

I’m not sure what to say to any of you who can empathize with this post, other than stop it.  Stop feeling ashamed.  Stop hiding.  Stop being afraid.  And you may just find that you are loved just the way you are, busted tendons and all.

You are sick.  You are not broken.  You are not less.  You have nothing to be ashamed of.  You have no reason to hide.  You are loved.  Even if you are sick and scared and can’t move or think, you are loved.  You are loved by your friends and family.  Even if you don’t feel the love from them, don’t believe the love from them, you are still loved because love is within you.  You are loved.  You just are.

 

flu tox get help you need banner click lisa

Fluoroquinolone Toxicity Featured in the Movie “The East”

The-East-Movie-2013

Here is a link to the trailer for The East – http://www.youtube.com/watch?v=gHpT9B7e7-Q#

I saw the movie “The East” on Saturday night.  About a third of it is about floxing.  It’s not about the pros and cons of fluoroquinolones – it’s about the damage that fluoroquinolones can do – floxing.  In case you think that I’m projecting and imagining things, here’s a link to a Huffington Post interview with Brit Marling, the lead actress and co-writer of “The East” saying that, indeed, the pharmaceuticals that the villainous Diaoxin (or Danoxin, or something like that. Please excuse the lack of memory – I am still a Floxie) is modeled after is fluoroquinolones – http://www.huffingtonpost.com/2013/05/30/brit-marling-the-east_n_3354665.html.  Fun fact – she got the idea for using fluoroquinolones as an example of a pharmaceutical drug with horrifying side effects from watching the PBS Frontline segment on fluroquinolones, Levaquin specifically – http://www.pbs.org/newshour/bb/health/jan-june11/antibiotics_06-16.html.  Go PBS, Frontline, Jenne Wilcox, John Fratti and all the other people involved in the Frontline piece! You rock!

And a HUGE THANK YOU to Brit Marling, Zal Batmanglij, Ellen Page, Fox Searchlight Pictures and everyone involved in making The East for highlighting fluoroquinolones and the damage that they do!  Thousands of people who have been harmed by these drugs will undoubtedly thank you.  You never know, maybe The East will inspire change in the production or distribution of fluoroquinolones and the film will save lives.  It’s entirely possible.  THANK YOU!  (Assuming that they are not actually going to read my blog, I intend to actually write them thank you notes.)

The movie is a work of fiction, quite obviously, and I’m sure that they didn’t want to get into legal trouble, so instead of calling the culprit drugs by their real names (Cipro, Levaquin, Avelox and Larium), they call it Diaoxin.  All of the symptoms of the fake Diaoxin are real symptoms of fluoroquinolone toxicity. They include:

  1. Central Nervous System Damage, specifically brain damage
  2. Tendon Damage
  3. Seizures
  4. Tremors
  5. Pain
  6. Rash

I’m sure that there were other symptoms too that were either implied more subtly or that I don’t remember.  Toby Kebbell, who played the character of Doc, did an excellent job at playing a Floxie, with the nuance that implied the many different ailments that Floxies, unfortunately, suffer from.

Some other things that they got right in the movie that should be noted are the delayed onset of symptoms, the fact that a lawsuit is impossible, or at least difficult, because the side-effects are listed on the package insert, that these drugs are being given to our armed forces in massive quantities, that these drugs are toted as a miracle cure for anthrax, that these drugs are commonly used in Africa (and other places in the world where malaria is common) to treat traveler’s diarrhea and malaria, etc.  Really, they did an awesome job at portraying as complete a picture as possible of fluoroquinolones and their toxicity.

I have seen a couple of reviews that criticize the movie as being unrealistic. One critic, Kyle Smith of the New York Post wrote, incredulously, “This drug, by the way, will within days (take your pick) cripple you, cause seizures and/or give you brain damage — yet somehow it earns billions in profits because no one but the terrorists has noticed all of this. (Shouldn’t their beef be with the FDA for approving the drug?)” – (http://www.nypost.com/p/entertainment/movies/the_east_lacks_direction_qLIX80cFcmWnXxs5prD5HL) Mr. Smith, if I didn’t live it, I wouldn’t believe it.  I wish that I was still a believer in the medical system, as you obviously are.  But this attitude of worshiping the medical system and insisting that it can’t be broken is, unfortunately, actually contributing to its destruction.  Listening to people’s stories, because they matter, and doing what is possible to fix the situation, will do more to save the medical system than the woefully underfunded and inept FDA is even remotely capable of.  And don’t for a second think that the real people who have really been effected by these real drugs don’t have a beef with the FDA. WE DO!

The East is a fairly mainstream movie that is getting generally good reviews.  People are going to see it. Most people will assume that the drug is entirely fake and that the symptoms are made up and too horrifying to believe.  I only wish that was the case.

I hope that The East will encourage public dialogue about fluoroquinolones and the harm that they can do.  Maybe that dialogue can keep people from being hurt in the future.  Let us hope.

 

flu tox get help you need banner click lisa