Message From A Stranger

Anyone who’s suffered from FQAD knows how it feels to be broken. I sure do. I’m approaching my ten year anniversary of floxing and I can tell you that despite my recent improvements in health it’s still a difficult way to live.

Recently my son qualified for a playoff tournament with his college team. He plays division I soccer and has worked very hard to get where he is. My husband and I love going to his games so attending this tournament was important to us as well. The one issue was the distance. It was in Davidson, NC, about 13 hours away by car. A couple years ago I could not have made the drive due to my daily battles with pain but this year I was willing to try. As broken as I am it was important to me to be there and airfare was far too expensive so we drove. After a heartbreaking overtime loss it was time to make the drive back home. At 9:00 am on a beautiful sunny day we hit the road. We stopped for lunch and gas and the next time our fuel light came on we decided to grab some dinner at a restaurant nearby.

After our long car ride I went to the Ladies room first and as I was washing my hands a woman entered the restroom and stopped near the sink. She looked at me with kindness and compassion and said to me “God will heal you.” My eyes began to well up with tears and as I looked at her I realized her eyes were welling up too. I nodded in reply and said yes He will. She then took both my hands in hers, stared at me with intensity, and prayed for my healing. It was incredibly emotional and beautiful. This complete stranger was so full of certainty, compassion, and love. I felt very comforted by her actions. I proceeded to give her a FQT awareness card at that point and tell her that I took Cipro and that’s how I got this way. She then told me that when her mother was 60 years old she got a flu shot and it paralyzed her. I knew then that she understood what I was going through. We embraced each other in that bathroom, I thanked her, and then I accompanied my husband back to my seat. She stopped by our table before leaving and again I was humbled by the intensity of her gaze, her conviction, and the kindness that was her. I was struck by the fact that there are truly wonderful and caring people in this world. People full of love and compassion, strength and beauty. People with a powerful message of hope for those of us who are broken.

I believe that sometimes God, Spirit, an angel, a higher power or whatever you choose to believe in puts people in our path to deliver the messages that we need to hear. I believe that’s the reason we wound up at that restaurant. You see during that car ride I prayed for continued healing and mentioned that I was struggling. I felt exhausted dealing with my health issues and I even asked for a sign that I was on the right path. I thought to myself at the time; how can I get a sign riding in a car on a highway for hours? And yet I did receive a beautiful message from a complete stranger. After meeting this lovely woman I felt restored and rejuvenated and I wasn’t hungry anymore. I’d received food for my soul from the power of this woman’s love and that was all that I needed. 

My wish for all of you who are struggling with chronic health issues is that you find your own path to healing, that you have the strength to get through each day, and that you receive the messages that you need to hear whether it’s from a loved one, a friend or a complete stranger. Open your heart and soul to hear the messages that are meant for you.

Yours in Health,

Betsy

Mind Over Matter

Mind over matter or matter over mind? As a “normal” person pre flox I believed in mind over matter however as a floxie with chronic health issues I’ve had to learn to listen to my body as my mind always thinks I can do more than I can or at least it used to. So for the floxed its matter over mind and adjusting to that way of thinking can be hard to do.

I have a T shirt with mind over matter printed on it. As a floxie living with FluoroQuinolone Associated Disability (FQAD) it’s something I’ve tried to do. I’ve always been a glass is half full person and living with FQ toxicity is no different. I do my best to think positively as I know our bodies are miraculous in their ability to heal. The reality with FQAD is that mind over matter usually doesn’t work. More frequently it’s a case of matter over mind.

It’s unfortunate because many floxies are told by loved ones to push through it or they are told if they get up and get moving they’ll feel better. As a floxie I wish it was that simple. I’ve tried pushing through the pain and weakness only to suffer more. Those of us that have been dealing with this for years tell newcomers to listen to their bodies and caution against pushing themselves mostly because we’ve been there, tried it, and it didn’t work.

There’s another side to the “mind over matter” that those who love us often don’t see which is when a loved one tells us to just get up and do something how much emotional pain and hurt that causes us. Over the years I’ve been in the support groups I’ve seen far too many posts by floxies who are devastated when someone they love says this to them. The common thread for those of us suffering is that if we could push through it we would. It’s hard when those closest to us don’t understand this. Not to mention that we are devastated by the knowledge that we can’t. When I was healthy before I took cipro I could push through when I didn’t feel great. I can remember having an ache, pain or feeling fatigued and going jogging or to an exercise class and working through it. However FQAD is different. 

Having lived with Fluoroquinolone toxicity for almost a decade now I wish it was as simple as mind over matter or just pushing through it. I would ask those that think we can if they would tell someone with ALS, MS, Lupus, arthritis and/or Parkinson’s the same thing. I don’t think they would because most people understand how debilitating these diseases are. I’m here to tell you that FQAD is similar in that it is a multi system full body toxicity. It can and often does affect our entire nervous system, musculoskeletal system, digestive system, endocrine system, and our joints, tendons, nerves, skin, bones, hearing, vision, memory, adrenals, liver, kidneys, lungs, and more.

If you or someone you love is suffering from Fluoroquinolone toxicity while it’s important to think positively because there are things you can do to improve such as going organic please remember that pushing yourself to do more physically might not be the best way to go. In this case matter over mind is usually better. Always listen to your body, trust yourself, and do what is right for you. If you’re a caregiver please remember that we’re doing the best we can, that some days are better than others, and that if we were able to do so we’d much rather be out and about actively enjoying ourselves. So please be compassionate because FQAD is a serious and debilitating toxicity and those of us living with it are doing the best that we can.

You Are...

You are still you.

You are the person you’ve always been. Your inner self is still here and beautiful. Never lose sight of that.

Chronic illness changes us in so many ways that unless you go through it and experience it first hand it’s hard to describe. It’s easy to lose sight of who you are and why you’re here when dealing with pain and health challenges that most people never think about. Floxing can cause all kinds of damage to our bodies and dealing with it is a challenge. I know because I’m living it too.

Your health issues don’t define you. Your inner strength and character define you. Your love and kindness towards others defines you.

Living with chronic illness can and often does create the necessity to redefine your own perceptions of yourself. With that change think about how this challenge has changed you. What is it that you’ve learned? What is it that you want to do about your experience?

But remember you are still you.  You are here for a reason. Never give up and don’t forget who you are. You are special. You are one of a kind. You are loved.

Blessings,

~Betsy

Back to School

It’s that time of year when parents start to prepare their children for school and another academic year. For parents the school year marks our calendars and tends to define how we see the year. As a parent of three I remember well the preparation involved in making sure summer reading is done, sneakers fit, and school supplies are purchased for that all important first day. My children are all older now but I still have one who just left for college and preseason training. I do very little to prepare him but I still mark the calendar with important dates as he’s an athlete and I still enjoy going to his games and cheering him on.

The preparation and support involved in being a parent can be taxing but even more so when one is chronically ill. Many seemingly small events can take on a life of their own when living with chronic pain and mobility issues. Attending an open house or a sporting event can be daunting tasks for someone like me. I know because I’ve been dealing with this for close to a decade. As a chronically ill parent one begins to worry; how will I be able to support my child(ren)? I was reminded of this recently when I was contacted by a floxed friend who was worried about their role as parent and whether or not they’d be able to raise their children and participate in their lives.

My answer is an emphatic yes you can do this! Perhaps not the same way you’d been doing it before. I definitely had to adapt to my limitations and my children did too. That being said I still attended all their games sometimes having other parents help me. I was still there for my kids to talk to, to remind them of the importance of their education, to hug them and celebrate their achievements, and most importantly to be a parent when they needed one.

All of our roles in the family have changed. My children had to become more responsible and help out around the house more. My husband had to attend the open houses at school when the walking became too much for me. But what they needed the most; the love and affection of a parent I am still able to give to them. Remember THE most important thing is that you’re still here for them. Your kids need you. You don’t have to be strong they just need you to be present. They need to hear that you love them.

We teach by example. Our children are sponges that soak up everything around them from a very early age. I do my best to remain positive and keep fighting to regain my health. One of my sons told me that I’m the strongest person he knows. I can barely walk a ¼ mile. I use a walker or a cane and my husband to get around. I’m very weak physically but it’s our emotional outlook that sets the example for our children. Make no mistake they have seen their mother cry and they still admire my strength. Hug your kid(s), tell them that you love them, and show them your strength and determination by fighting to get better.

I had two teenagers and one preteen when I was floxed. Today my children are young adults. Two have graduated college and gone on to pursue their careers and one is still studying for his bachelor’s degree. I’m extremely proud of the young men that they are today and I’m grateful for every day that I can share with them. If you’re worried about your children you are normal. As parents we never stop worrying about our kids. I know my mom still worries about me. (I love you Mom!) I’m grateful that my kids aren’t the ones dealing with FQAD. I’m glad it’s me and not them. We are never too old to learn and floxing has taught me a lot about our current medical system and government. My eyes are wide open now.

So as your children start a new school year remember that you love them and you’re doing the best you can. They will understand your limitations and just be happy that you are here for them. They will learn from the example that you set so forgive yourself for your limitations and be the best parent that you can be.

~ Betsy

Should I or Shouldn't I

As floxies we want to improve our health, reduce our pain, and try to get back to leading a more active and productive life so we constantly wonder whether or not we should try some new therapy or supplement someone else says helped them. The more time I’m on the boards and support groups the more I see this topic come up. As a newly floxed person I have jumped on the bandwagon to try supplements that someone else has recommended sometimes with good results, sometimes bad results, and sometimes with nothing changing at all. Whether or not to try a new therapy or supplement is a question we all face in trying to recover.

As a longtime floxie with numerous health issues the best advice I can give is to research, research, and research some more anything you are considering trying. And this goes for mainstream medical options as well as alternative therapies and supplements. I cannot stress enough that we are all different so what works for one may not work or even harm others. Then when starting something new start low and go slow.

Sometimes we learn of more than one new supplement at a time so we buy a few things and start taking all of them the same day. Early on I was guilty of this as well. I now know that the best way to approach a new supplement is to take one new thing, wait several days, note any changes in health and if nothing negative happens then try it again. Proceed slowly and with caution. I’ve heard of those who’ve felt good on a new supp, only to increase the amount and after several days start feeling worse. Sometimes feeling worse can just be a cycle that coincides with the new supp but sometimes it can be the supplement itself. If you’re not sure what’s causing the worsening err on the side of caution and stop the new supplement. Wait a few days and then decide whether or not to try it again. Start something new slowly, use a small amount and gauge your reaction. One example of this is essential oils (EOs). I had great success with these as have many others and I still use them almost daily however I’ve met two floxies who reacted badly to them. So I advise caution here. Also, when I realized they were helping me I began using more and more of them. I learned that with EOs that less is more. Increasing the amount didn’t help any more than the lesser amount did. So I learned through experience to use them diluted to 10% with a carrier oil, and applied topically or diffused (never ingest them!). This leads me to my next bit of advice; listen to your body.

You know yourself better than anyone else. What is your gut telling you about your floxing? If you aren’t sure then keep listening. There are many well meaning people in the groups who will give you advice on what helped them and they are wonderful to share their experiences with the rest of us. I’ve found some very beneficial remedies this way. I’ve also tried some things that didn’t help so at the end of the day you need to sit down and think about what you need to do for you. So after you’ve done your research, listened to advice of others, thought about your unique situation, and done your budget then ask yourself is it still something you want to try? If it’s a very expensive therapy and some did well with it but others did not and it’s going to set you back financially do you still think it’s a good idea? Weigh the pro’s and con’s before jumping in. Also remember if you hold off on it for now it’ll still be around if you decide to try it later. Some of the best results have come from simple dietary changes such as eating organic, avoiding GMOs, reducing toxic exposure from household cleaners, detergents and Teflon pans, and switching to organic personal care products. And the best thing is that this won’t break the bank. My laundry detergent I use now is a lot cheaper than the name brand I used!

Remember we are all unique. We all come from different backgrounds and have different genetics. That’s one of the things that makes this world so beautiful. Keeping that in mind what works for one might not work for another so do your research, ask questions, start low and go slow, and listen to your body. And if you aren’t sure about something you don’t have to decide today. There’s plenty of time and there are simple changes you can make now. My last bit of advice is to keep a journal of what you’ve tried, what worked, what didn’t work, and supplements that work synergistically. This will help especially if you have brain fog.

Yours in Health,

Betsy

New FDA Announcement

Today the FDA announced updated Black Box warnings and an updated patient medication guide for all Fluoroquinolone antibiotics. This follows on the heals of their May 12th, 2016, announcement to change prescribing guidelines; that Fluoroquinolones not be prescribed for sinusitis, bronchitis and uncomplicated UTIs.

The new FDA announcement can be found here; FDA Updates Warnings for Fluoroquinolone Antibiotics

This is another big step in helping to make the medical profession aware of the serious disabling and often permanent side affects of these medications. PLEASE don't ever take them unless it's a life or death situation and all other options have failed. It only took four 500 mg pills of ciprofloxacin to ruin my health. Don't let this happen to you or someone you love. There are much safer alternatives available.

Yours in Health,

Betsy

Desperate times...

Desperate times call for desperate measures is another saying that I grew up hearing my mom say on occasion. I forget what she was referencing then but it’s funny how some things stay with us as the years pass by. It’s this feeling that drew me to purchase the book, Medical Medium by Anthony William about how to heal from mystery illness. We all know what a mystery floxing is so this book seemed interesting to me. Yes I was improving from floxing thanks to a supplement I’d begun last year but I never stop looking for ways to heal my body. So when I learned about this book from a couple other floxies I thought; why not? I’m doing better but what if I could help things along even more? I’ve learned through the years that sometimes thinking outside the box is necessary when all other options have failed. And even though I’d made progress I’m far from being healed.

So I bought the book as I’ve got plenty of time to read nowadays. I really had no idea what to expect but I found it intriguing right from the start and what he was saying seemed so incredibly logical. You see years ago when I was trying to describe what I was going through to my closest girlfriends I decided to email them about it. That way I could put into words what was going on and they could read and digest the information without interruption. When writing about floxing I compared it to having a flu that never ends. Just like flu symptoms fluctuate throughout the illness my symptoms continually changed too so it seemed to me to be a good analogy not to mention it sometimes felt like I had flu symptoms. Upon reading Anthony’s book about how to heal from chronic mystery illnesses he discusses how some powerful antibiotics can cause viral outbreaks. We’ve known for years that there’s a balance between bacteria and Candida in the body and antibiotic use can cause yeast overgrowth so why couldn’t the same thing happen with viruses? We also know that many people once they’ve had mono will test positive for the Epstein Barr virus (EBV) and I’ve talked to floxies who say they’ve tested positive for it. So why couldn’t an antibiotic allow for the same overgrowth with a virus that they do for Candida? I think they can and I also know how fluoroquinolone antibiotics can suppress the immune system.

I want to mention I’m not a scientist (although I’ve loved science my whole life) nor am I a medical professional of any kind. What I am is chronically ill which started after I took four pills of ciprofloxacin in 2007. Prior to this I was healthy, active and strong with no health problems besides allergies. I am however focused on trying to recover my health and I’ve been researching safer natural remedies for years. Reading this book was eye opening because it seemed to be common sense. It was a “lightbulb moment” for me so much so that I began a group on Facebook to discuss the concepts in the book for anyone interested. The group can be found here; Floxies for the Medical Medium

I started implementing some of the dietary recommendations back in March so it’s been about four months since I made adjustments that follow some of what Anthony recommends and while I’m not healed yet I continue to head in a positive direction. In the book he states that some illnesses might take a year or more to heal from so it’s not a quick fix but if you’re floxed like me then you already know there are no quick fixes for this. I can tell you that it’s helping me. For instance I’ve been taking one capsule of L lysine, an essential amino acid, daily for years because it’s important for collagen production, for vitamin B6 absorption and is an anti viral. So at the first sign of a cold I’d take it too. Well I learned from Anthony William that we can take up to 3,000 mgs daily and I was only taking 500 mgs. Last year I had a frozen shoulder that took me over 6 months to recover about 60-70% use but I still couldn’t sleep on it or even roll on that side for more than a second or two. And that was with a cortisone shot (8 ½ yrs out from floxing; I don’t recommend them within 6 yrs of floxing) and a few months of PT. Then this past March my other shoulder popped while sleeping on it and became frozen. It was so bad I had to wear a sling which is very difficult when using a walker! I had just begun increasing my L lysine from one capsule to 2 to 6 capsules daily and within one month had recovered 80-90%!! Here it is a few months later and both shoulders have improved to where I can sleep on either side for a period of time before it becomes a bit sore so I change positions. I believe the supplement I began using last year also played a significant role in my recovering so much quicker but feel Anthony’s protocol is helping me as well. The book discusses foods and supplements that help different health issues. Like me Anthony William is not a medical professional but he has a special gift and that gift has helped me. I invite you to read his book if you’d like and to join our Facebook discussion group as well.

Desperate times call for desperate measures and thinking outside the box. My journey to wellness is ongoing and has been a long one but I’m thankful because I’m so much better than I was a year ago. 

Yours in Health,

Betsy