Visualization

When my oldest was about 11 years old he had a coach who taught the players to visualize what they wanted to accomplish on the playing field. He had them do this before every game on the way to the field. It was his way of having his players focus on the task at hand so that they showed up thinking about the sport and their contribution to the team. I’ve never forgotten this tool and taught my other kids to use it too regardless of what sport they were playing.

After becoming disabled by Ciprofloxacin at the young age of 46 and suffering all kinds of neurological damage I began reading about the brain-body connection. I read a couple books about how to retrain the brain and develop new neurological connections. You see I was told by several neurologists that my brain wasn’t communicating with my muscles properly and I wanted to try to reestablish that connection. I remember reading about a study that involved visualization only this one had to do with physical strength. In the study they had their control group, a group that did specific physical exercises and a third group that just visualized doing those same specific exercises. The results were surprising in that after completion of the study and assessment of the participants they learned that those in the study who merely thought/visualized doing the exercises showed significant gains in strength. When compared to the group that actually did all the exercises they were only about 15-20% (if memory serves) less strong and had made significant gains in strength over the group that didn’t do any exercise. Just let that sink in for a minute… Visualizing doing the exercise increased their strength only slightly less than actually physically doing the exercise.

You might be wondering why I’m talking about this but I feel it’s extremely important for those of us floxed. The reason is this; many of us become bedridden or fatigued to the point that we’re unable to exercise which we all know is important to maintaining strength. But physical exercise often puts those of us floxed at risk of injury to our tendons and joints especially for those that cycle or flare. I’m telling you about a way to maintain some muscle strength without putting yourself at risk of a tendon tear, fall or excessive fatigue or some other type of injury. It’s a method that I myself have used especially when I’ve been in too much pain or some injury has prevented me from being mobile. I have noticed that when I am practicing visualization and thinking of a specific exercise (usually from my years of taking Pilates) I can actually feel small muscle contractions and movements in the groups of muscles involved in the exercise.

I’m telling you about this now because I recently mentioned it to a couple of my floxed friends for their specific and most debilitating injuries in an effort to help them strengthen surrounding muscles so that their muscles might better support them structurally. Just like any new exercise regimen I recommend starting with a few light reps daily and increasing the amount and duration of your visualization sessions slowly and as tolerated. And as always please listen to your body! You know yourself better than anyone else so trust yourself.

If you want to maintain some level of fitness and muscle strength without putting yourself at risk of injury I feel this visualization technique offers one of the safest ways to do so. And of course as with any exercise program don’t forget to visually stretch out after your muscles are warmed up! Yes I have used visualization to stretch my muscles after these sessions and can feel the muscles relax and loosen up. I think you’ll be amazed at what you can do. If you’re bedridden, in a wheelchair or use a walker like I do this is a great way to maintain a certain level of muscular strength. I suggest making this a part of your daily life to see what it can do for you and let me know how it goes if you want to. Stay strong and keep the faith that this can get better. I wish you all the best.

Yours in Health,

Betsy

Note: I just watched the Netflix documentary called “Heal” and there are some interesting stories on visualization improving health and recovering from injury in it. I highly recommend viewing it if you are able. If this technique can help to build strength and stretch muscles then who knows what else it can do for us?!

The EMA is in the process of restricting use of FQs!

"EMA’s (European Medicines Agency) human medicines committee (CHMP) has endorsed the recommendations of EMA’s safety committee (PRAC) and concluded that the marketing authorisation of medicines containing cinoxacin, flumequine, nalidixic acid, and pipemidic acid should be suspended."

For the complete report from the EMA dated, November 16th, 2018, please see the following link;

EMA review of side affects of quinolone and fluoroquinolone antibiotics

We are being heard so please keep speaking up about the dangers of these antibiotics. You never know who you will save from the debilitating and disastrous damage these medicines do.

Yours In Health,

Betsy

Gratitude

Such a simple word with such a powerful meaning. As a chronically ill person this one word stretches into a magnitude which is difficult to describe. My reliance on others for help to do day to day things has left me with such tremendous gratitude for even the simplest of things and very recently this took on a life of its own.

You see I’m going to try yet another therapy that is not covered by insurance to regain my health. This treatment is far more expensive than anything I’ve done up to this point. Yes I’ve spent tens of thousands of dollars on alternative healing modalities over the years that I’ve been sick but this one treatment alone costs tens of thousands of dollars. So for the first time in my life I created a GoFundMe fundraiser to ask for help. It’s kind of funny because I actually went on to their site to check out the platform, loaded a previously written blurb, uploaded a picture and went to see what was next to do thinking that there would be a spot to review it before making it final and the next thing I saw was “your GoFundMe is now live!” I sat there thinking; what? How did that happen? Because anyone who knows me knows that when I do something I set it up and walk away often going back several times to reread it to determine whether I like it or not and whether I’m conveying the message I intended in the way I intended. It can be days before I post something I’ve written to my blog as I want to be clear in my message. So suffice it to say I’m cautious. And imagine my surprise when I got that message!

Well there must have been some divine intervention at work to get me up and running with this because the response has been overwhelming. I’m in awe at the kindness the people in my life have shown. Some that I don’t even know! What’s also blown me away is how my children’s friends have stepped up to help out. Many of which I’ve known since they were in grade school. My gratitude for how they have helped me and my family is hard to put in words. Every single person who has shared my fundraiser or donated has touched my heart in a way that I can’t describe. Every donation whether it is from family, friend, acquaintance or stranger, and whether it is for $5 or $500 has brought me to tears. Because I know the small amounts are from people who have very little and yet they still want to help. I’ve been crying for days. I’ve had others crying with me as they see how much their gesture means to me. They are tears of gratitude.

It’s humbling to ask for help. I didn’t want to. But some dear friends of mine that I’ve met through the support groups for floxies encouraged me to do so and I’m grateful that they did. One day perhaps after my treatment I will be healthy enough to pay it forward. For now however I’m still housebound so I will continue trying to help others by writing words of encouragement, sharing my knowledge of nutrition and natural remedies, and being as compassionate as I can be to those like me that are suffering.

This journey of mine has taught me many things. But the biggest lesson I’ve learned recently is the inherent goodness in people. People want to help! I don’t like to ask for help as I defined myself as the mom and caretaker of my family for many years. It’s difficult to ask but the kindness of others I’ve witnessed these last few days has blown me away and humbled me like nothing else.  My only hope is that I’ve been able to touch others in a way that so many of you have touched my heart this week. If I manage to do that then I will have lived a good life. My gratitude for the people in my life has left me full of love. My heart is overflowing. May your journey in life be one of learning, may it be filled with love, and may you know the power of gratitude.

Forever Grateful, Betsy

Floxies vs. Normals Part 2/Pain

Recently I wrote about differences between those suffering the side effects of Fluoroquinolone antibiotic toxicity and those who aren’t. While I mentioned a number of side effects I talked mostly about fatigue and recovery time from physical exertion. One of the adverse effects I didn’t discuss in detail is the myriad of different pain syndromes. I mentioned chronic unrelenting pain but that description while accurate doesn’t do justice to the layers upon layers of pain many of us suffer. This is my attempt to describe the pain we endure in a manner our loved ones will understand.

As a normal I’ve known pain in various forms and thought I had a good grasp of what pain is. Before this antibiotic devastated my health I had enough instances where I was hurt to believe I knew pain and knew it well. I couldn’t have been more wrong.  Prior to Cipro I had my nose broken when I got kicked in the face by a horse. A week later a horse threw his head and caught me in that same broken nose displacing the fracture. My old mild fracture in my back that I mentioned in Floxies vs. Normals Part 1 caused sciatica all the way into my foot. I’ve always been active and as a result endured my fair share of mishaps and injuries, and I had a couple car accidents. In one I lost control on black ice and rolled my car. BUT the thing my injuries had in common was that I healed. When I fell off a ladder working on our house I healed. When I slipped on ice and hurt my tailbone I healed. I got some good bruises skiing but I always healed. Then I took Cipro.

Cipro sent me head first into the upside down world that is floxing. It’s here that I learned there are levels of pain I never thought were possible. I’d been through surgery before. I’d suffered broken bones before. I’d sprained ankles and popped fingers out of joint before. I’d suffered chronic back pain before. I’d had migraines before. But nothing prepared me for what I was about to endure. The types of pain from nerve pain, to muscle pain, to tendon and joint pain, to pain from hot and cold temperatures (yes this can be quite painful), to pain from pressure, and pain from bones popping out of place, and headache pain that made prior migraines pale in comparison.

In the alternate universe of floxing there are all kinds of pain I’ve come to experience. Nerve pain in all its many forms; stabbing, burning, shooting, debilitating, numbing and the neuropathy I have in my feet 24/7. My feet are like ice and this radiates up to my knees. They are sensitive to pressure of any type. Wearing socks with ridges or bands that constrict? No thank you! Most shoes are uncomfortable. It’s difficult to find shoes with a cushioning insole that don’t press on the tendons and as for going barefoot? Heck NO! Just a small pebble or rough ground can be painful. The stabbing nerve pain when it hits can literally drop me to the ground or cause me to lose use of a limb, finger, hand or foot until it passes which can take seconds or days. There is no apparent rhyme or reason to these nerve pains in their variety of forms. They can and do come and go on their own schedule.

Then there’s muscle pain. I’ve had contusions before but this is nothing like that. At one point when I suffered severe muscle wasting known as rhabdomyolysis my muscles themselves were breaking down. I literally saw my arms and legs shrink by half and my skin hung loose like an oversize sweater. This happened in a matter of months and was so dramatic my family members commented on it. But the pain was something else entirely; my cat who is very petite would step on my legs and the pain… Dropping something as light as a plastic cup on my foot would bring tears to my eyes. My husband squeezing my arm or leg with affection would cause pain and the deep tissue massages I loved became unbearable. In addition my badly damaged muscles cramp severely with mild repetitive use such as coughing 5 times as opposed to once. This seemingly benign action can cause painful spasms in my abdominal muscles. Again this should not happen and yet it does. This is a whole new world of pain.

Tendons are known to be slow to heal but when taking a medication known to cause tendinitis and tendon rupture (see package insert) it takes on a whole new level. As these antibiotics cause soft tissue damage I’ve suffered two labral tears. One was in my hip and another in my shoulder. Both occurred while sitting. In the instance of my hip I bent my knee up to my chest. As a flexible person this shouldn’t have injured me. Not realizing the damage these medications had done I had surgery to repair it. My tendons and ligaments were stretched to do so. Big mistake! For years after my hip would slip out of place and became so unstable that walking became difficult and painful. I opted not to do anything for my shoulder and I’m glad. I’ve popped ribs out coughing, the plantar fascia in my feet/heels hurt all the time. My ankles are so bad they don’t bend to go down stairs. I can’t kneel on my knees and my fingers don’t work. I struggle with utensils due to tendons that don’t move properly. As for joints my knees, ankles and hips are the worst but my shoulders, elbows and wrists are problematic and let’s not forget spine issues with bulging discs (Degenerative Disc Disease) and back pain. There’s more but I’m sure you get the idea. Most normals that have a joint or tendon issue have it localized to one spot but not floxies. We tend to have it throughout the entire body to varying degrees.

Migraines before were painful. Migraines after are devastating and debilitating. The one I got while on Cipro was the most intense thing I’ve ever experienced. I’ve never had meningitis but the pressure and pain in my head was so excruciatingly painful that I can only imagine it must be similar. I’ve had infrequent migraines my entire life but the floxed ones truly devastate my body leaving me so weak as to be unable to function at all. There is no comparison.

Then there’s emotional pain. To go from being normal with an infection, taking medication, and becoming physically disabled almost overnight takes a toll on even the strongest person. Imagine having the flu; we all know how awful the flu makes us feel. Usually it lasts a week and we spend that time in bed just trying to get through it with the help of a loved one. Now imagine having the flu last for months and years on end. It might get a little better for days at a time or even a few weeks and then something brings all your symptoms back. Imagine it never ending. You do your best to put on a brave face and you try to function but your symptoms never let up. (Again some floxies do recover!) Can you imagine the emotional toll and the pain from taking a medication to alleviate illness and becoming chronically ill or disabled as a result? I can because I’m living it but I ask you to consider how you would cope.

I recently read an article on “smiling depression”. I’d never heard this term before but it’s about people suffering from depression that put on a happy face and go about their daily life while the people closest to them never know the true extent of their suffering. This description struck home with me as I think it would with many floxies. I think this concept can be aptly used to describe our pain. I have smiling pain. I rarely discuss it unless it’s severe and I spend my days ignoring it because acknowledging it would also validate it which I refuse to do. Instead I visualize putting my pain in a box, tying it up, and placing it on a shelf in my garage so it’s out of my house and out of me. This is one of my coping mechanisms for these different types of pain that we deal with.

The life of a normal was difficult at times but also wonderful. Yes I knew pain before becoming floxed and thought I knew how to treat it to recover and heal. The pain I live with now is something out of a science fiction novel and if I wasn’t living it I wouldn’t begin to be able to understand just how thoroughly debilitating it is. Unfortunately I know firsthand exactly what it is as it never leaves me. It’s my constant companion through good days and bad. The bad days can be extremely difficult as they can leave even the strongest person desolate. So for the normals I once again ask for your compassion. We didn’t ask for this. We trusted the medical system and now our reality has changed so that every day is a struggle. We struggle to be okay. We struggle to function. We try to greet the world the way we used too and we pray. We pray for help. We pray for healing. We pray for a day off from the pain we endure. We pray for relief from our symptoms and do all that we can to restore our health. Some of us are lucky enough to find a way out of the upside down but for those of us still struggling we ask that you remember to be kind and understanding of our fragility. We ask for your help and sympathy while we fight through our pain every single day.

Thank you for your compassion and God Bless all of you.

Betsy

Floxies vs. Normals Part 1/Healing & Fatigue

Before taking those four pills of Ciprofloxacin in 2007 when I had a health issue or injury I’d work through it. I’d exercise and strengthen the muscles to improve the affected area and eventually I would recover. An injury could take days or weeks to heal BUT it would heal and I would be back to my usual routine. Floxing is different in that complete healing doesn’t seem to happen at least for me. (This isn’t to say that you won’t heal as a number of floxies have but rather that it’s not my experience.) For instance I suffered a mild fracture to a vertebra as a child that wasn’t discovered until I was in my 20’s. As a normal (not floxed) this led to some lower back issues during pregnancy so I was a regular at the gym taking Pilates classes for core strength. I believed back then as many normals do that as long as I maintained a certain level of fitness I would be fine. Then I took Cipro.

After my horrible reaction to Cipro my whole world changed. I was now a floxie. It was as though someone had flipped my world upside down. If you’ve seen the series Stranger Things then I was now living in the alternate universe. Everything looked the same (not dark and dreary like the TV show) but life as I knew it had changed. It took me a while to catch on to the changes but eventually I did. As I developed health issues and injuries post floxing I would try to address them as I had in the past often with undesirable results. You see I tried to push through the pain but instead of improving it became worse. I tried to strengthen the injured areas only to make them weaker because what I came to learn is that our mitochondria are affected by fluoroquinolone antibiotics and not in a good way. Mitochondria are the powerhouses of our cells, the energy producers if you will and when they are affected negatively they can’t do their job and everything comes crashing down. I would come to learn that I was damaged at the cellular level and eventually it led to fatigue so severe as to be indescribable to someone not suffering like me. This fatigue was one of dozens of issues but to describe it I would say that it felt like trying to move through a sea of cement and I was in up to my neck and sometimes over my head. I didn’t even need to do anything strenuous to feel that way.

Recovery time after activity of any kind also became a new experience in the upside down world of floxing and it still is to this day 11 years later. Before when I was a normal I would go to the gym, run errands, and do chores and the next day do it again. After Cipro exercise would leave me exhausted for days and sometimes it would be a week or more before I was able to attempt to try again. That heavy mind numbing, muscle aching fatigue just wouldn’t go away after exercise. No longer did a day or two of rest enable me to recover. I continued to slide further and further in strength. My son said to me at one point “I just don’t understand how you can go from being so strong to being so weak so fast”. My reply to him was “I don’t either.” Well after 11 years of this suffering and a lot of research I have a better understanding of it. I’m happy to say that I have improved from my worst with a clean diet rich in fruits and vegetables but am I healed? No I am not.

I know this post is a bit different from my usual posts of encouragement and keeping faith that you can and will get better (which I still strongly believe) but I feel it’s necessary because of posts in the support groups by floxies expressing pain and frustration when their loved ones don’t understand why they aren’t capable of doing more; why they aren’t getting better. A common theme in these posts is when the loved one says to the floxed person – if you’d just get up and do something or exercise you’ll get better.  The implication being that we’re not trying. I know these normals are well meaning but they couldn’t be more wrong. Our bodies are screaming at us to stop, and rest.  It’s sad but sometimes the people we love the most say hurtful things when what we need is their understanding. In their defense I say that until you experience floxing for yourself you can’t possibly begin to understand what we go through; the chronic unrelenting pain, muscles not working, arms/legs/hands/feet giving out, impaired central/autonomic/peripheral nervous systems, extreme digestive issues, and much more. However I need to say to those that don’t support us or say hurtful things to us; shame on you! Shame on you for acting like we can shrug off our health issues like it's an uncomfortable jacket. Shame on you for thinking that any one of us chooses this way of living! As a friend, family member or loved one of a floxie I ask you to please step back and remember who this floxed person was before they were poisoned. We were productive members of society with jobs, families, friends, hobbies, sports, and volunteering. I was a wife, mother, sister, daughter, aunt and I STILL AM just in a very different capacity. Instead of taking care of others I’m now the one who relies on people to take care of me.

There are no guarantees in this life. I thought I was doing everything right to live a long and healthy life. My one mistake was trust in my doctor to first do no harm. It’s not that he intentionally harmed me but rather the pharmaceutical industry has manipulated medicine for profit at a great cost to the individual. But getting back to Floxies and Normals I will tell you that this isn’t an “illness/injury” that one can just push through and get over. Our bodies have been poisoned because we trusted in the medical system. The floxies that I’ve met are trying desperately to heal from this toxicity where methods used by normals just don’t work. To the normals whose loved ones are floxed I ask you to please treat them with kindness and love. Our lives have changed drastically and that alone is extremely difficult so please be supportive as we try to find our way out of the upside down and make our way back into the world. We need what everyone needs (even normals!) and that is love and compassion as we mourn the loss of our healthy selves and try to make our way and live in our new reality that is floxing.

Thank you for listening to this floxie and God Bless all of you.

Betsy

My Imaginary Friend

We all know about children who have imaginary friends and perhaps you were one of those children when you were growing up. An imaginary friend is invisible and can accompany that child anywhere he/she goes; a friend that doesn’t judge you but rather remains available as a constant companion.

Since I became sick with a mysterious illness over ten years ago let me tell you about my imaginary “friend”; my constant companion who’s never been far from my side all this time until recently that is. My imaginary friend accompanied me everywhere and was never far from my thoughts. A companion I’ve known very well but one that didn’t help me. My imaginary friend held me back and kept me in a dark place. My imaginary friend was quite simply put – Fear. My “friend” Fear was always with me; a constant in my mind preventing me from fully and completely living. What did I fear you might ask; so many things would be my answer. I feared getting sicker and developing more health issues. I feared my pain would increase, my motor function would continue to worsen and so much more. If you are floxed then I’m sure you’re familiar with the plethora of side effects. As my “friend” became more involved in my life I fell further into that pit of darkness. I even feared doing things I love. 

At my worst point I cried and prayed for help. This became a regular thing for me some days as I was in a very dark place but it was in that place I began to hear my inner voice. It is that voice that led me to create this blog and the journey that led me out of my despair. Listening to my inner voice led me to relinquish my desire to be in control of everything and start to trust in the process of life. By trusting in life, myself, others and God I’ve been able to let go of my imaginary friend. To be honest it hasn’t been easy but things worth doing rarely are. It’s a process and I’d be silly to think that my fear will be gone forever however it’s no longer a constant in my every day decisions. It still pops up now and again but I’m finding it easier to deal with. How did I do it? With trust, prayer, and a friend who told me about Amy Scher, an author, who’s suffered severe chronic illness from which she’s recovered. Her journey wasn’t easy and her recovery complete until she dealt with the emotional side of illness and her fears.

So I’m currently working on my emotional healing and releasing my imaginary friend; Fear. A “friend” that wasn’t helping me move forward but rather holding me back from all the good things I still have in my life; a previously constant companion that kept me in a dark dreary and unhappy place. By saying goodbye to my “friend” I’ve found more joy, love, hope, and happiness in my life. I’ve even returned to trying old things that I loved and did before such as horseback riding. I’m not galloping in the woods or soaring over jumps again but who knows… One day I just might try.

If fear is your companion as a result of chronic illness and pain please consider releasing it and instead live in your now. Find something in your life to be thankful for even if it’s a very small thing. In my opinion the small things in life are often the very best. I embrace them and enjoy them as much as I can. My wish for you is that you reconnect with those things that bring you joy and in doing so you too can let go of fear and find peace and happiness again.

Yours in Faith,

Betsy

Acceptance

Something we all want and need is to feel accepted; accepted by our family, friends, coworkers and even strangers. When struggling with chronic illness this is especially important to those suffering.  As one who battles chronic illness just getting out the door some days can be difficult so when I am out in public it’s uplifting to be acknowledged and accepted. That said it can be devastating when the opposite occurs. Just as a simple smile or a gesture of kindness can make a normal persons day so to can it help the physically disabled.

We all want to be accepted for who we are and what we’re capable of. Someone who’s become disabled through no fault of their own desires this as well. It’s especially hard when you’ve been capable and independent to be thrown into a life of pain and health issues. NO ONE wants to live this way yet I’ve spoken with numerous floxies who find that when they don’t recover quickly their friends and family often suggest that if they just pushed through it they’d be fine or if they got up and did something then they’d feel better. These well-meaning loved ones often don’t understand the depth of what we’re dealing with. How much that we wish it was that simple. But sadly it isn’t and unless you’re living with this you can’t begin to comprehend the damage these meds have done to us and the struggles we continuously encounter.

The raw truth is some days its quicker to list what doesn’t hurt than what does and the bone crushing fatigue can be something out of a science fiction novel. There isn’t a system in the body FQAD doesn’t affect. That being said it can also change from minute to minute and day to day. Fortunately many can and do recover. However the mainstream medical community has no idea how to help us and their methodology is to prescribe more medications which only treat symptoms leaving us to fend for ourselves in the recovery process. That can make those of us who need acceptance feel less understood as a result.

I’m here to ask that whether you see someone’s disability or not please be kind. These are people with feelings, hopes, and dreams like a healthy person.  Just a simple nod and a smile might make the difference between a good day or a bad one for someone who’s fighting chronic health issues so please be kind. We never know what another person is going through and even the chronically ill or disabled want to be seen for whom they are and not their illness. So remember acceptance is something that everyone wants even those who are sick.

Yours in Health,

Betsy