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

FQAD

This post was originally named "Toxicity" but I have received so many comments containing links to other sites that are in a foreign language that I have renamed this post FQAD. I apologize to readers for any confusion. If the comments do not stop I may delete this post altogether which saddens me as I feel it's important to explain this in relation to Flouroquinolone antibiotics. Please read on below and feel free to comment in English as long as you do not include links to other websites. Thank you for your understanding.

What is toxicity? Toxicity by definition means; the quality of being toxic or poisonous. The example using the word was “the toxicity of a drug depends on its dosage”. I found it interesting that the use of the word toxicity in the example sentence included the relationship to drug usage. But those of us suffering from side affects of Fluoroquinolone antibiotics often refer to it as Fluoroquinolone toxicity because we know from experience that it is not like a typical allergic reaction. The reason I bring this up is to offer some hope and insight having had my reaction over ten years ago and spending the last decade trying to recover. It’s not been an easy journey for me but I’m here to tell you that there is hope.

Suffering a toxic reaction to an antibiotic was a wake up call for me. I’ve known since my teenage years that I don’t tolerate medications well so I’d always done my best to avoid them. That being said when I was in grade school I had a bad case of pneumonia which required antibiotics. My fever was so bad at one point that I was delirious and my big sister told me years later that she thought I was going to die. Penicillin worked wonders so despite my fear of medications I trusted antibiotics. After all they were all derived from natural things like mold right? Wrong! There are synthetic antibiotics out there such as Fluoroquinolones that have very severe side affects which I learned about firsthand but lets get back to toxicity.

When one thinks of toxic exposure to chemicals or pesticides one thinks of detoxing. Well I’m of the opinion that exposure to toxic medications requires the same thinking. We need to detox toxins from our bodies in a safe and gentle manner that doesn’t further harm us. There are ways to do this that don’t involve paying hundreds or thousands of dollars. I’ve never had that kind of money so I’ve done it on the cheap. How you might ask. I’ve done it with food. A very simple yet effective detox strategy is to drink lemon water first thing in the morning and wait half an hour before eating or drinking anything else so that it has time to help your liver purge toxins. This easy method has been around a long time because of its effectiveness and safety. Just add the juice from ½ a freshly squeezed lemon to 8 oz of water and drink up. If it’s too sour for you add a tsp of raw local honey to it and you’re good to go. Easy peasy and raw honey in and of itself is helpful for healing.

There are other food based detox strategies that I’ve learned about and implement on a daily basis but this is by far the simplest of them. Remember if you really want to recover then you need to give your body the nutrients it needs to heal. Eating donuts or muffins for breakfast, fried food for lunch and pizza for dinner won’t give your body the nutrition it needs to heal. They are empty calories for the most part. Fresh organic vegetables and greens, fresh fruit (or frozen if fresh isn’t an option), seeds, nuts and in some cases dried fruits make excellent snacks (as long as they aren’t full of additives), organic potatoes (yes potatoes!) and small amounts of grass fed meat will give your body the tools it needs to rebuild the damage from your toxic exposure. Also remember that you are what you eat!

It’s important to mention that to aid your recovery one also needs to prevent further toxic exposure by buying cleaners and toiletries that are environmentally friendly (no harmful chemicals), avoiding pesticides like those found in weed killers (use garden vinegar instead) and chemicals in bug sprays and sun screens. I read a post just the other day about a person who Googled how to make non toxic insect repellent. The recipe called for distilled water (or boiled) with some olive oil and a couple drops of lavender essential oil. She was amazed at how well it worked! Not one single mosquito bite. I’ve heard that you can apply straight olive or coconut oil to your skin to repel bugs and it’s very effective. So this summer don’t tax your body further or waste your money on bug spray when there are healthy options available. And coconut oil can double as a sunscreen because it has an SPF of four.

Healing our bodies is possible! But just like a machine that requires a specific type of fuel that’s free of contaminants and proper maintenance to run efficiently so too does our body need nutrients (fuel) to repair damage, help to remove toxins (contaminants), and avoidance of more toxic exposure. These are all key elements especially in today’s world to allow our bodies to function at an optimal level.

Yours in Health,

Betsy

What's Your Truth?

We keep hearing about fake news lately so I wanted to take a minute to write about truth. Those of us who’re chronically ill and battling daily pain and physical struggles do our share of faking it. I don’t mean this in a bad way like the connotation associated with fake news. People hear about fake news and are disgusted and who can blame them? But I want to explain what faking it means to those of us struggling with our health.

Before I get into that I need to mention that those of us who’re floxed often don’t have doctors that believe our health struggles are real. Many are even referred for psychiatric consults. Things are changing since the FDA actually defined our condition calling it FluoroQuinolone Associated Disability or FQAD for short. But many doctors still won’t admit the drugs they’re prescribing cause the pain and other health issues we have even though they are written in the package insert under side affects. Not having doctors believe us often leads to family and friends who deny our condition exists too. For those of us injured this is frustrating to say the very least. When we are the most in need of support from our loved ones and our doctors we are denied. I’m fortunate to have family and friends who believe and support me but I have had my fair share of doctors who didn’t. As a result I removed myself from their care and kept searching until I found compassionate ones who listen.

As a result many of us who are floxed fake being well. We put a smile on our face and when people say how great we look we thank them. We don’t tell them how much effort it took to shower, and get dressed just to see them or that we’ll pay for it after by spending the rest of the day in pain or in bed or both. And in some cases floxies can be bedridden for days after one simple outing. I again count my blessings because I am past this point of fatigue and feel I have improved slowly but steadily for the past couple of years but I remember it well and I know countless others who struggle to perform the simplest of daily tasks such as washing their hair. Sometimes these small tasks cause that individual to spend the remainder of the day resting or in bed.

This reminds me of a time when I was having a very rough couple of days with fatigue, nausea, and headaches; in other words the works. I saw my best friend who I’d tell anything to and she asked me how I was doing. I replied that I was good and my husband looked at me and said really? Why don’t you tell her about x, y, z and he started listing my ailments. My response was; oh she doesn’t want to hear all that. And she looked at me and said “yes I do!” I was faking being well and my husband called me out. But this had become a part of my life so it was hard to admit sometimes that I wasn’t.

This brings to mind another issue. I had so many things going wrong with my health that I’d only tell my husband about the most troubling one. As a result he didn’t really understand how sick I was. I kept thinking that these things would go away and as any floxie knows the myriad of symptoms we endure changes endlessly. They can last seconds, minutes, hours, days, weeks or months but they are ever changing and cycling in severity and duration. So I’d mention that my Achilles hurt but not that my hands were numb or not functioning, that my legs felt like cement, my shoulders ached, my muscles were in constant spasm in one spot or another, and/or that I had vibrations and tingling in places. So he didn’t know how bad off I was. I reached a point where I realized I needed to tell him more so he would know what I was going through. Then I began telling my close friends too so they would understand. It was difficult opening up and speaking the truth but it was important too. I’m a mother so I was the caretaker. Needing to be taken care of was humbling and difficult for me but I had no choice. I had to face my truth and let others know too.

I’m quite sure that all of us with chronic health conditions no matter what caused them have done our fair share of faking being well or if not "well" then at least okay. So I ask you today to think about this; what’s your truth?

Yours in Truth,

Betsy

The Power of Prayer

Many times in the course of my life I’ve turned to prayer for help with a difficult situation and many times I’ve received answers to those prayers in different ways. Someone once said that when you offer a prayer for help it’s heard and received but delivery times may vary. In other words you can trust that your prayer is being heard and answered but those answers may come in a variety of ways and will be delivered to you in God’s time of choosing. It makes sense to me that my time frame might not work with God’s plan so I choose to trust in his plan for me. I would add that we need to be open to receiving his messages and acting upon them. If one isn’t sure of the message then prayers for clarity in understanding are useful as well.

This reminds me of a story I once heard; a person had been on a boat that sank so as they tread water they prayed for God to save them from drowning. A log floated by but instead of grabbing onto it they continued to tread water and pray. Next a board floated by but they continued praying. Finally a boat came by but instead of taking the assistance offered they said that God would save them and so they continued treading water until they couldn’t anymore and drowned. When the person got to heaven and asked God why he didn’t save them He replied; I sent you a log, a board and a boat and you refused all three. What more could I do?

The reason I mention this story and being open to receiving messages is because when I was at my lowest and praying for help I needed to be open to messages too. Doing so led me to different therapies that have helped me recover some of my health and from some of my worst problems. I am still a work in progress but at least its progress! I strive for progress not perfection and trust that I am where I’m meant to be.

I hear from others who believe in the power of prayer and have stories of their own in regards to receiving answers. One of my stories can be read right here on my blog. It’s called “Message from a Stranger”. If you don’t feel your prayers have been answered remember they have been heard, be open to receiving messages, and delivery times may vary.

I wish you all healing, hope, peace and love.

Yours in Faith,

Betsy

One Decade

What is a decade? A decade can be viewed as ten years, 120 months, 520 weeks, 3,652 days, or 87,648 hours. If you’re young it might seem like a life time. Tell a 7 year old that wants a bike that they have to wait ten years and you probably won’t like their response. Even to a middle aged or elderly person it’s significant. No matter how you look at it, it is a considerable amount of time.

Well I was floxed ten years ago and it’s a considerable amount of time for me too. It’s a long time to be fighting chronic health issues. It’s a long time to endure pain and to struggle. It’s also a long time to learn something new and that’s what I’ve spent countless hours doing. I’ve researched and learned about safe alternatives to prescription and over-the-counter medications. I’ve learned how to live a healthier lifestyle, help others to do the same, and I share my knowledge. I’ve learned to be my own advocate and to not blindly trust doctors.

It daunting to think of how much I’ve lost during that time. All those hours, days, weeks, months and years that I’ve lived with pain and disability when I could have been doing so much. I could’ve been a stronger more present mother, wife, sister and daughter. I could’ve continued enjoying the things I did before suffering from FQAD such as snow and water skiing, jogging, taking pilates and exercise classes, swimming and more. So it’s with this realization that I will not go back and spend time mourning what I’ve lost and I will instead focus on what I’ve gained.

I’ve gained compassion for others because we truly never know what others are going through. I’ve gained knowledge that I try to share with others to prevent them from going through what I have. I’ve gained insights that I would’ve never had if I hadn’t lived this way for the past ten years and I’m grateful for all of that and more. It's been a defining decade; of both bad and good for me.

I’m a floxie. I’ve been floxed for ten years now. I suffer floxing and/or FQAD (FluoroQuinolone Associated Disability). However you want to say it, qualify it or name it. Ten years ago I began taking the first pill of a ten day prescription; 500 mgs of ciprofloxacin twice a day. I only took four pills. That’s all it took to change my life forever. It’s my floxiversary and my best advice to stay healthy is to eat for your health. Don’t take your health for granted because you never know when it might change. Eat organic, no processed foods or sugar, avoid added chemicals; avoid pesticides and GMO foods (Genetically Modified Organisms). Eat the way Mother Nature intended us to. Shop the outside of the store. Spend the bulk of your food budget on fruits and vegetables with some good quality organic grass fed protein and your body will thank you for it. You’ll have more energy, fewer aches and pains and a better, stronger immune system to fight off illness.

This advice applies no matter what illness you are suffering and it applies to healthy people too because we never know what our “tipping point” will be. Pesticides like glyphosate can compromise and might shut down our sulfation pathway in the body. This can lead to cancer which is why I recommend organic foods. GMOs are foods whose DNA is genetically altered in a way that could never happen naturally. This is much different than hybrids which are cross pollinated in a way that can occur in nature. That is why many people call GMOs Frankenfoods. The bulk of corn and soy in this country is genetically engineered or GMO which is why I avoid eating them because the truth is very little study has been done on these foods to determine the long term affects  on our health. Processed foods often contain chemicals, flavorings, colorings, and can have added sugar and salt that aren’t good for us. There are ways to prepare healthier options that are quick and easy so choose wisely. For instance adding some fresh squeezed lemon and raw honey to a glass of water is much more refreshing and uplifting than adding a scoop of sugary powdered lemonade mix and it’s healthier too. So I recommend eating like your life and health depends on it because it does.

Yours in Health,

Betsy

Caregivers

Caregivers for the chronically ill are truly special people. I’ve heard countless stories of those who became disabled only to have their significant other leave them. But there are also many more that stay and take on this important role. But caregivers can also be a parent, sibling, friend and/or neighbor and to those people I say thank you for all that you do for your loved one. I can’t emphasize enough how important it is to have someone support us in our fight to regain our health. The chronically ill are warriors but having support in our battles lightens the load for us.

Having been the caregiver for my family in the past it’s very difficult to relinquish that role to someone else. It’s hard to admit even to myself that there are things I can no longer do.  I fought it for a long time right up until I fell and broke my hip a couple years ago and wound up in a wheelchair. I’m back on my feet now but only because I use a walker. I miss having that role but I do my best to help out when and however I can.

Recently I went away for a couple of days because we were invited to stay with another couple in a similar situation as ours. The wife has health issues not too unlike my own and the two husbands are our caretakers. Like me the wife was very athletic and capable. We both had very similar interests before our health issues took those from us. Both of us were injured by medical professionals but the circumstances are very different. Our spouses on the other hand are still very active and can do all the things we used to do with them. So the two husbands were able to leave for the day to go skiing and I’m happy they had the opportunity to do so. You see it’s important for caregivers to get away now and then and live their life too. They need a break to have fun and enjoy activities that those of us that are ill or disabled can no longer do. I used to call it a mental health day when I would take time out of my routine to do something like going skiing and I think caretakers need that time off too.

As a former caregiver I see both sides of this situation. I miss the days when I could be the one taking care of others. I’m sure that many like me do too. I also see how important it is for my husband to get a break from the routine to do something fun now and then so I do my best to give him those opportunities. I tip my hat to the caregivers of this world especially those that care for a chronically ill loved one. Thank you doesn’t seem to be adequate in this instance for all that they do for their loved ones. But I thank you from the bottom of my heart.

Betsy

Friday The 13th

I first learned about the superstition behind Friday the 13^th when I was a little girl. I remember coming home from school and telling my Dad that the following day was going to be bad and that I was frightened. He replied to me that it was just a superstition and that he believed each day was what you made of it. He told me that he’d always looked at Friday’s that fell on the 13^th as good days and that your luck was what you made it to be. In other words it’s all a matter of perspective and that your outlook would determine the type of day you would have.

This simple conversation with my father changed my perspective and when the following day passed uneventfully and was actually a good day it changed how I came to view this superstitious day as well. From there on out I have always thought of Friday the 13^th as a good day and I haven’t been disappointed. I have my dad to thank for that. His positive outlook created a positive feeling for me as well.

Sadly my dad passed away years ago but I think of him often and I miss his presence in my life. I also think it’s no coincidence that he passed away on a Friday that happened to also be the 13^th of the month. I firmly believe it was his way of telling me that he’s okay and that everything happened as it should. For some losing their father on a Friday the 13^th might confirm the superstition surrounding the day but for me it sends the opposite message. My father always believed it was a lucky day and I find solace in the fact that he passed peacefully at home with his wife and two daughters. It still hurts to have lost my Dad but I know he went the way he wanted to.

So I wish for all of you to have a good day. I know we are battling illness and pain but as my dad always told me each day is what you make of it. Keep fighting the good fight, find your strength, make your mess your message and never give up! People fighting chronic illness are some of the strongest and most compassionate people I’ve ever met. So remember on this “Friday the 13th” that you’ve got this today and every day.

Blessings and Healing for all of you,

Betsy

Charlie

In February of 1944 a young British royal navy radar specialist aboard a Frigate was sailing the seas on a mission when his ship was torpedoed. The ship managed to limp into Newfoundland where those aboard thought it would be repaired. When the damage was assessed it was found to be so extensive as to be irreparable. It was a miracle the ship made it to port at all. This particular radar operator then found himself stationed in Boston for nine months while a new ship was built for the crew.

At the same time a young woman belonging to the Second Church in West Newton was working at the Watertown Arsenal. She was one of only four woman to be employed there by the federal government because she had the necessary credentials; a Master’s degree in library science. This church was an amalgamation of four religions including Congregationalist, Presbyterian, Methodist and Episcopalian and sent out newsletters to invite soldiers from other countries to the church for social meetings on the weekend. It was there that the young woman and British navy radar operator would meet.

This soldier in the royal navy would become my Uncle Charlie and the young woman is my mother’s sister; my Aunt Ruth. Aunt Ruth is 94 years old now and sadly my Uncle Charlie passed away many years ago. But this Christmas we had the pleasure of my Aunt’s company as she visited us from England where she has lived since the two met all those years ago. As she told us this story of my Uncle who was one of the kindest and most pleasant men I have ever known she told us another story too.

Uncle Charlie was in his radar tower, one of the highest points on the Frigate, amongst ice bergs when a huge wave washed over the ship. It swept my future Uncle overboard while his mates watched helplessly as there was nothing they could do to help. Then another wave came and washed him back onto the ship where his mates were able to rescue him. His ship mates said it was a miracle he survived. My family and I believe God had plans for him that included my Aunt. He would carry the scars of that incident on his back for the remainder of his life. As a younger woman I never knew any of this about my Uncle. I only knew that he was kind, happy, and fun to be around. His love of life was evident to everyone that ever met him.

Life presents adversity and challenges to everyone. Some challenges are more difficult than others to be sure. But it is those very same struggles that shape us into the people we ultimately become. It is how we handle adversity that shapes our lives. Being chronically ill is a significant challenge that floxies face on a day to day basis. The struggle is real and constant. Sometimes things happen that catch us off guard even when we think we finally have “it” under control that shake us up and remind us of how much we’ve lost physically. This happened to me on Christmas Eve when I picked a gift during our annual Yankee swap. A gift given with love that reminded me of physical things I’m no longer able to do.

As a girl I could never have imagined that my happy loveable Uncle survived being washed overboard and torpedoed. I was unaware that his back was scarred. As an adult with chronic illness I wonder if it was those very same experiences that gave him that zest for life that was so apparent to everyone that knew him and that brought tears to my Aunt’s eyes as she spoke with love of the man she married.

Life is full of challenges. It is how we handle them that determines our character. Chronic illness has interfered with my plans for my future as I can no longer do the things I once could. I’ve had to readjust my expectations and that is what I have done. I can still be present and enjoy life. I can still love those that I’m blessed to have in my life. I can still give back to others albeit in a different way. And I can honor my family with love and respect.

Your Friend in Adversity,

Betsy

PS I hope you enjoyed the stories about my Uncle Charlie and Aunt Ruth; two very special people in my life. Even though they live far away from me they have always been close to my heart.

Second Church is also where my parents were married and here is a photo;