A Light in the Window

I grew up in a family of readers and I’ve always been an avid reader too. To this day we always share books with one another. Back when I was a young woman and still living at home my mother gave me a book called, A Light in the Window by the author Jan Karon. After reading a lot of Steven King novels this book was a refreshing change of pace for it takes place in a small town and revolves around the life of the local minister.

One of the things in the book that hit home to me was that the minister and his neighbor would always say “Philippians 4:13” whenever they were dealing with a difficult situation. This stayed with me over the years because Phil 4:13 means; “I can do all things through Him who strengthens me.” Over time I’d forgotten the exact line but would think to myself Philippians 4:13 when life got difficult.

I’ve mentioned breaking my hip previously and let’s just say I did a really good job. It was no simple fracture. I needed surgical repair. The only reason the doctor didn’t do a total replacement was because of my age. I was only 53 at the time and hip replacements only last so long so he chose to “fix” it instead. I use “fix” a bit loosely because it’s nothing like what it was. It’s not the same shape, my leg doesn’t fit in the socket the same and it’s now considerably shorter than my other leg. All of this adds up to a physically challenging lifestyle for me. As a result I lean on Phillipians 4:13 more now than ever before. It’s difficult enough being floxed but adding my new reality with my hip I find this simple quote helps me every day. As I try to take a few lopsided and painful steps here and there without my walker which can be frightening I find myself repeating it over and over.

Not everyone has the same type of faith or belief system but whatever you need to do to give yourself the strength to face the challenges of living with chronic illness then do it. Whatever provides you comfort, eases your pain and brings you peace then hold on to that. For me it’s; I can do all things through Him who strengthens me and inch by inch. For others it might be taking it one day at a time or just pushing through. Where I find comfort in prayer for others it might be meditation or chatting with a friend in a support group. Whatever it is that cuts through the darkness and allows you to find your light in the window hold onto it and embrace it. My hope is that we all find our light.

Love and Light, Betsy

This just in...

The FDA is making changes regarding the prescribing of fluoroquinolone antibiotics!!! It's too late for me but it should save others from this nightmare. I just read the following;

"As you may know, the Quinolone Vigilance Foundation testified at the Food and Drug Administration regarding the use of fluoroquinolones. Thirty-five patients and patient advocates joined together to speak in front of an advisory panel.

The FDA listened. Just moments ago, Executive Director Rachel Brummert received the following:

"Today, the FDA is requiring label changes for antibacterial drugs called fluoroquinolones, including an updated boxed warning and Medication Guide, and advising that the serious side effects associated with fluoroquinolones generally outweigh the benefits for patients with sinusitis, bronchitis and uncomplicated urinary tract infections who have other treatment options. For patients with these conditions, fluoroquinolones should be reserved for those who do not have alternative treatment options.

An FDA safety review has shown that fluoroquinolones are associated with disabling and potentially permanent, serious side effects that can occur together. These side effects can involve the tendons, muscles, joints, nerves and central nervous system. As a result, the FDA is requiring label changes for all systemic fluoroquinolone antibacterial drugs to reflect this new safety information."

Thank you to everyone who submitted public comments and who traveled to the advisory hearing to share their stories!"

I was one of those who traveled to the FDA hearing last November and I submitted my story to the advisory board beforehand.

This is the link to the official announcement;  http://www.fda.gov/downloads/Drugs/DrugSafety/UCM500591.pdf

And if that isn't enough the image below was taken from a CDC article and here is the link; http://www.cdc.gov/getsmart/community/about/should-know.html

I See You

On one of my vacations with my husband I went to visit a floxie friend. After I left I called her to tell her something and during our conversation she said to me; I see you not your disability. She went on to say; I see the person that you are and the person that you were and not your speech issues or what floxing has done to you. It was one of the kindest things anyone has ever said to me and I’ve never forgotten it. I felt the same way about her although it wasn’t something that I’d consciously realized until she had verbalized it. That conscious realization was a blessing. You see when suffering chronic illness as your health deteriorates and your limitations become more severe you tend to feel as though you’re losing your identity. The person you were and the things you loved that you can no longer do. Bit by bit I felt I was losing pieces of myself. Just like the movie Jerry McGuire when Tom Cruise says “you complete me” this friend saying “I see you” made me feel more whole. It made me feel like a more complete person. When she said that to me I realized I’m still the same person that I was before I just have physical limitations now. It was a relief to hear that from someone who’d never known me when I was healthy.

When I chat with others dealing with the debilitating aspects of fluoroquinolone associated disability (FQAD) I see them not their limitations. We are an incredibly diverse group of people with a broad age range and yet every one of us is still our unique and beautiful individual personalities. Just because you are going through this never forget who you are. Your illness doesn’t define you any more than anyone else is defined by their illness. It might change you in ways you never imagined but that can sometimes be a good thing. I find myself to be a more compassionate person than I was, I don’t sweat the small stuff, and I’ve learned so much about natural remedies for health that my family is better off as a result. By speaking out about the dangers of these medications I’ve had dozens of friends tell me they’ve refused them because of what I’ve been through so I celebrate each of these as a life saved. These are the positives I’ve taken away from my condition. I also believe that we can improve our situation so even if I’m not the person I once was I see myself again.

I see you too not your disability.

~Betsy

9 Year Floxiversary

Note: I wrote and published this post on February 26th, 2016 on my Facebook page; Betsy's Message. I debated whether or not to publish it here and decided I should include it.

It’s my 9 year floxiversary today (9 yrs ago that I took the antibiotic that caused my chronic illness) and I’m here to say that I’m healed. Emotionally that is. Physically my body is still a work in progress. But I’m at peace with what’s happened to me, I’m happy, and I’m living again. I’ve stopped looking back at what my life was before and mourning the loss of what I thought my future would be. I’ve chosen instead to live in the present and trust that I am exactly where I was meant to be. In doing so I’ve become content with my life and I’m enjoying it. I’ve taken up new activities that accommodate my physical limitations. I’m not saying that I’ve given up on healing my body. On the contrary I’m working harder than ever. “Never give up” is still my motto, and I have hope that I can and will continue to improve my health. The interesting thing is that as I’ve become a happier person I find that I feel better overall and those around me are happier too. I’m not saying that I don’t have pain and that some days are worse than others but I’m refusing to let it define me. If I’m having a bad day then I do less physically and I go easy on myself. If I’m having a good day I take advantage of it and try to tackle something that I wouldn’t otherwise.

My message is a simple one. Take this journey one day at a time. Treat yourself and your body with the reverence and care that you deserve and remember to enjoy each and every day. On the bad days it’s important to find joy in the simpler things; whether it’s that yesterday was a good day, a loved one or friend said or did something thoughtful, or that the sun is shining. Whatever it is that makes you smile think of that when you’re struggling. If you need help to find something to be thankful for then reach to a support group for help. The kindness and compassion of others in support groups got me through some of my darkest days. Remember always that there’s a light at the end of the tunnel. It might be difficult to get to sometimes but you can reach it and like me find joy in life again.

Yours in health, Betsy

Inch by Inch

My father-in-law has a favorite saying; “Inch by inch life’s a cinch” and I always thought this saying was cute. It also taught me to look at life a bit differently. It’s become especially important to me to view life this way when dealing with chronic illness and pain. I was reminded of this again very recently.

Nine days ago I was sleeping on my right side (good shoulder) when it collapsed making a loud popping noise. I immediately felt pain so I rolled onto my back, breathed slowly and went back to sleep. It was sore after that but I pushed forward for two days until the pain became too intense. Afterward my arm was useless. Anyone who’s dealt with floxing will know what I’m talking about. I had to once again rely on my husband to help me dress, cut up my food for me and more. I pulled out my redox gel, homeopathic pain relief cream, and frankincense and ginger essential oils to apply to my shoulder. I began icing several times a day, and eating anti inflammatory foods. I was fortunate to have an appointment with my physiatrist (sports medicine doctor) who did an ultrasound, and x-rays but the only thing she found was some fluid on the bursa. That same day I went to my chiropractor who found that my arm wasn’t situated in my shoulder socket properly which he corrected. What followed was days of relying on my husband to care for me once again. Like MacGyver he rigged my walker with a strap so I could use it with one hand and the other side would push against my hip and we put my arm in a sling to take the weight off my shoulder.

Feeling very discouraged I thought of the saying; inch by inch life’s a cinch. I’ll admit I had thoughts of; “oh no not again” as I spent most of last year dealing with a frozen left shoulder. Also I’d had a day where I’d made myself smoothies, washed dishes, cut up a large pineapple, emptied the dishwasher, started a batch of bone broth chicken soup, run two loads of laundry and finished the soup to feed my family for dinner all while taking care of a sick child just days before this setback. It had been a long time since I’d accomplished that much in a day and now here I was requiring help to get dressed. Every time I thought “how long will this last?” I pushed it out of my mind and instead told myself “inch by inch”. Each day I woke up I took inventory of my pain which had me in tears a few times and focused on every improvement I could find. As my husband asked me if I wanted to see the shoulder specialist I went to last year I replied let’s give it some time. I kept up with my natural remedies for pain, adapted my daily regimen by having my husband make me my smoothies before he left for work, and focused on improvements.

Yesterday I was able to take my arm out of the sling and today I was able to dress myself. I still have pain and limited range of motion but I’m making progress and recovering faster than I thought I would. Why is my recovery going so well? It’s not any one thing I’m doing but rather a combination of dietary changes which include switching to various organic fruit/veggie smoothie combinations for a nutrient dense meals. A supplement "tweek" which involved increasing the amount of L lysine (an essential amino acid necessary for collagen repair, a CNS anti-inflammatory and anti-viral) I take daily from 500 mgs to 2,000 to 3,000 mgs, natural remedies to decrease the pain and inflammation, and patience.

Inch by inch…

~Betsy

Note: I wrote this post on April 28th, 2016 for my Facebook page; Betsy's Message and I'm happy to report that it's now 3 weeks later and my shoulder is 90% recovered. It's amazing to me as the pain was worse this time than previously but what I'm doing is working.

Beauty is Only Skin Deep

This is a strong message that an individual’s character is what really makes one beautiful. How a person handles the challenges that life throws at them defines the type of person that they are. I often say how through floxing I’ve met a group of the most courageous, kindest, and strongest people I’ve ever met. They fight through pain with admirable strength, and find humor in dealing with illness. They are truly the most beautiful people I know.

There’s another side to the above statement I want to discuss and that is that our exterior appearance is a reflection of our internal health. Our skin is our largest organ and its primary function is protection but it can also tell us a lot about our internal health that we can’t otherwise see. For instance if your skin is very dry chances are your cells in your body are also. I know when my skin was extremely dry I was drinking a lot of water and yet always felt a bit dehydrated. I knew my cells were having an issue taking up fluid and this was reflected in my skin’s appearance. During this time my eyes watered a lot (a sign of dry eyes) and my throat was raspy and felt dry too. A very common side affect of FQT. What helped me more than drinking water was eating foods with high water content such as fruits and vegetables. I want to clarify that I’m not a medical professional or a nutritionist and I have no background or education in these fields. I’m just a woman who has suffered from FQAD for over 9 years who has tried numerous different things to get better. What I found which many floxies know already is that eating as organic as possible, eating foods in their natural forms (not processed), avoiding GMO’s (especially corn and soy products), avoiding sugar and unhealthy fats (corn, canola, margarine, etc) has helped me a great deal.

Another issue I noticed with my skin is that my body hair fell out. I no longer needed to shave my legs and the peach fuzz on my arms, fingers, toes and face disappeared. This too was an indication that my skin wasn’t healthy and that something was wrong internally. Other signs were the loss of the pads on my fingers so that when gripping something I could feel the bones in my hands. My legs also went from looking young for my age with no cellulite to turning into lumpy messes of cellulite seemingly overnight from collagen degeneration. Our nails can be another indicator of our internal health. Things to consider are their strength are they brittle and do they have lines, ridges, white spots or are they yellowed or have other discoloration. What I want to point out here is that if there are changes to your toenails or fingernails then my suggestion is that you look it up on the internet as these too can be signs of changes in our internal health.

The good news is that I turned this around and you can too by paying attention to what your body is telling you and taking the necessary steps to improve your health. By giving your body what it needs nutritionally it can repair itself. We are so fortunate to live at a time when we have a wealth of information at our fingertips. My suggestion is to put that to work for you and do your own research to determine the underlying cause of these changes. As always when doing your research trust your gut instincts when combing through the information available. And remember while beauty is only skin deep our external appearance can be an indicator of our internal health. A window if you will into what’s going on inside our bodies. Use this knowledge to your advantage and be aware of what your body and its appearance are telling you.

Yours in Health,

Betsy

No Two Snowflakes are Alike

When dealing with chronic illness comparing oneself to others with the same illness is a normal thing to do as is comparing one’s illness to other illnesses. But just as no two snowflakes are alike no two people are alike either. Realizing we are a combination of our unique genetic make up, environmental factors, diet and lifestyle and that all these things contribute to how we respond to what we are going through is important.

Early on in my floxing I often thought to myself that I got off easy. Sure I had pain and a whole lot more in the way of symptoms but I wasn’t as bad off as others. As time wore on however that viewpoint began to change. I saw others worse off than me recover quicker and become more active again as I continued to worsen. I was trying all the different therapies that I could afford, eating healthy, had some things improve and yet I continued to decline. I kept a positive attitude and continued trying to address my worst health problems and yet I got weaker.

Comparing oneself to others is a very common and normal thing to do especially early on when one is trying to understand what’s happened and why. That being said there comes a point when one needs to let go of that and focus on their personal situation. It doesn’t mean one can’t celebrate with a friend who’s made progress or sympathize with one who’s struggling. It’s a simple step of accepting what’s happened to one’s own self, addressing it, and looking toward your future and purpose in life. It’s saying; I’m here for a reason, identifying that reason, and then living life to the best of your ability. Focusing on oneself is a necessary part of the process. Taking time out of your day to meditate on what you’ve learned from your current situation, how you want to deal with what you learned and how you want to proceed in life is an important step.

Eventually you will realize that you are unique and that comparing yourself to others even those with the same illness as you isn’t always helpful. There will always be some who are worse off and some that are better off. It’s best to focus on your individual situation and what you can do about it. It’s very normal to compare but when it becomes upsetting to do so it’s time to ask yourself if it’s something you should be doing. That’s when you know it’s time to look within and focus on yourself. And when doing so I’ve found it’s best to face each day with a positive outlook as sometimes that can be the difference between a good day and one that isn't.

Yours in Health,

Betsy

Message in the Mess

When dealing with her diagnosis of cancer Robin Roberts said someone told her (I think it was her mother) to “make your mess your message”. She was doing that by discussing her experience publicly. I admired this and thought to myself that I have a mess of my own dealing with fluoroquinolone toxicity. But what’s my message? I try to spread awareness of the dangers of these antibiotics, try to help others in the support groups deal with the side affects by sharing information I’ve learned along the way, and I work hard to keep my family healthy in the safest way possible (avoiding pharmaceuticals). But what’s my message? At the time I didn’t have one and truth be told I find it somewhat hard to define now. That being said it’s becoming clearer to me than it was a few months ago.

In asking myself; what’s my message? I began to listen to my inner voice. We all have one. Some refer to it as instinct but its there. Far too often we get too busy to listen. Several times in my life I’ve come to regret that because if I had listened I could’ve avoided pain and hardship including getting floxed. As a result I’m trying harder to listen and act on what my inner voice is telling me. That’s why I’m here and began this page in the hope I can help others.

So what’s your inner voice telling you? Or what’s your message? Even if you don’t have a “mess to make a message” we all have a message. It’s something we feel urged to accomplish in our lives. Perhaps you’ve already begun working on yours or you’ve been putting it off waiting for the right time. Why not start now? What’s it telling you to do? Is it urging you to look for a new job, call an old friend, start a new activity or create something in a medium you’ve always wanted to try? Is it telling you to share your story like mine is? Is it suggesting you mend a relationship that is broken, try a new treatment to improve your health, advocate for something you believe in or to go back to school? It can be any number of different things as we’re all unique and have our own message we wish to bring to our families, friends, and loved ones or an even larger audience. Listen to your inner voice; contemplate what it’s telling you and then when you’re ready act on it. You’ll know when to start as it gets easier to hear that voice the more you listen. Most importantly trust yourself.

I’m still working on defining my message. All kinds of things come to mind; be kind to others, live life to the fullest, it’s easier to maintain health than to restore it so be careful what you consume whether it’s food, toiletries, or pharmaceuticals, etc. and other things come to mind as well such as my disability doesn’t define me and disabled people have value to contribute to society. I know my intent with “Betsy’s Message” is to create a positive place for people to come to when they need comfort and support. Hopefully it will be a place of hope for those suffering. We all need cheering up from time to time whether chronically ill, caring for someone who’s ill or just feeling in need of help. I hope that you find some of that here and if I ever clearly define my message you’ll be amongst the first to know. I will add this; just because I’m disabled and have difficulty with my speech as a result of the neurological damage I’ve suffered it doesn’t mean that I don’t have something to say. I’ve got a message, maybe even more than one. My message for today is one of hope. My health is improving even though I’m nine years out from being floxed. I’ve got a long way to go but I have faith that by listening to that inner voice of mine and trusting myself I will get there and I will heal. If I can improve and heal then you can too. Trust yourself and trust in your journey and you too will find your message in the mess.

Yours in health, Betsy

Hindsight is 20/20

I’ve learned so much about health and healthy living since I was floxed. In hindsight I wish I’d taken more time to learn these things at a younger age since prevention is vital to maintaining one’s health. That being said I’m thankful that I know them now. My whole family is healthier as a result of what I’ve learned and trips to the doctor are almost nonexistent. Some of what I’ve learned I’m going to share with you now.

At the first sign of a cold or virus I take or give my family member a mixture of different supplements. A primary one being manuka honey. I buy organic and like 16+ or higher. I always keep it on hand in my house. It’s a great anti viral and anti bacterial. We adjust how much we consume based on how sick we are and take some other things as well. Another favorite anti viral is black elderberry. It’s been proven to shorten the duration of the flu and it’s also an excellent preventative if taken daily. If someone has the flu then I recommend taking it 4 or more times a day and increasing the amount one takes as well. We also take it as a preventative when traveling in the winter. There are a couple products with black elderberry so do your research to find the one you think is best. Next up on my go to list is grape seed extract which is a staple in my house and L lysine which I take daily because of my personal health issues and my genetics report. I’ve done this report for my children as well and give L lysine to them at the first sign of illness. L lysine is necessary for the body to utilize vitamin B6 and some with compromised snps need to supplement. It’s also vital for collagen repair, is a CNS anti-inflammatory and a potent anti viral. There are other foods and supplements to head off infections as well such as garlic, olive leaf extract, apple cider vinegar, essential oils and more. For essential oils I recommend topical application diluted to 10% with a carrier (90%) or diffused. I’d never ingest them. As always do your own research to see what you think is best. For body aches I love a tart cherry concentrate. My favorite right now is a tonic with ginger and turmeric added. We dilute it in water or plain seltzer and even the picky eater in my house will drink it all day when sick.

Another thing I do is Google “natural remedies for… “And enter the symptom or illness we’re dealing with. We are so fortunate to have a wealth of knowledge at our fingertips with the internet and I’ve found it an invaluable tool for research. There are many products from nature that can prevent a virus from turning into an infection. By going this route the need for antibiotics can often be eliminated and with that the side affects of medications are avoided too. It doesn’t take much time to find a safer natural remedy and in doing so you can save yourself a life of illness and pain like I endure from taking a fluoroquinolone antibiotic (Ciprofloxacin) back in 2007.

Put your health first and be your own advocate. Finding safe health promoting alternatives to prescription and over the counter medications is much easier than it used to be. I research and buy products online. My “medicine” cabinet contains products that are homeopathic and plant based now. As a result my entire family is healthier and no one has needed antibiotics in years.

Yours in Health, Betsy

Don't Judge a Book by its Cover

Something that most every floxie endures at some point is disbelief that they’re really suffering. The disbelief could be from a trained medical professional, a family member, friend or a loved one. It’s hard because other people can’t see or feel what we are feeling. The people around us can’t begin to comprehend what we go through on a daily basis and this can make life challenging for all parties involved. I’m sure this can happen with other illnesses as well.

Among the long term affects of FQ toxicity are joint/tendon pain/degradation, popping/slipping joints, collagen degradation, nervous system damage, muscle wasting, neuropathy, tremors, stabbing pains, burning pain, vasculitis, vision/hearing loss, coordination problems, fatigue, chemical sensitivity, heart problems and more. Very little goes unaffected. When you read the aforementioned list of issues many are not visible to the eye. The person suffering feels it to varying degrees but it isn’t something someone else can see. That doesn’t mean it isn’t there. Floxies who have gone through the medical system often get test after test that comes back normal or negative like I did. If they do find something it’s often mild and they’re told that it wouldn’t cause what they’re describing. This has happened to me also. That being said it doesn’t mean that it’s in their head. It is very real but the damage is often at the cellular level and therefore extremely difficult to see.

I remember one day years ago asking my husband to go for a walk with me. I told him that I didn’t want to go alone. His reply was no. I didn’t get to go outside that day because not only was I worried I’d fall I was concerned some part of my body would give out and I wouldn’t get back. Such is the life of someone whose body has been badly damaged by a fluoroquinolone antibiotic. Much later I brought this up to my spouse and he said with a look of sadness on his face that he just didn’t realize I was that bad.

When someone becomes chronically ill it’s important to remember that our loved ones may make mistakes in how they see us. I know my husband still saw me as the capable strong woman he married and no matter how much I told him he still had difficulty wrapping his head around the change. He was not alone as I too struggled with this. I also didn’t tell him everything that was going on because I thought who wants to hear that? There are so many things destroyed by fluoroquinolone toxicity that it would take a long time every day to list them so I didn’t bother. I might mention in passing something major but most times I said nothing at all. By not discussing all the issues I dealt with it made it easier for me to focus on living. After all who wants to dwell on the bad things? My silence made it even harder for those around me to understand what I was going through.

As the years have gone by the side affects of this class of drugs has become more widely recognized and with that more medical professionals have a better understanding of the damage they do. Even the FDA has recognized FluorQuinolone Associated Disability (FQAD) as a side affect of the medications. In the future there’s hope that it might be studied and ways to help those affected might be discovered. In the meantime what sets us apart from other chronically ill people is that we are on our own. Fortunately we have each other for support.

If you or someone you know is chronically ill please do your best to support them. Even accompanying them on a doctor’s appointment to show the doctor that you know your friend is truly suffering. For those going through this having others believe them is a blessing. We might be smiling and laughing in the company of others but inside we can be crying in pain. Please do not be upset if we leave a social gathering early or if we arrive late as it may have taken a tremendous effort just to attend. For some floxies just going out takes a toll physically. I’m very fortunate in that I continue to feel better these last few months but some days are still difficult. Please show kindness and compassion for others as we never know what someone else is going through. Not all illness and/or disabilities are visible to the eye. It’s important to me to state that despite all the difficulties floxies face; their personal health struggles, not being believed by the medical community or being told it’s all in their head they are some of the strongest, most resilient and wonderful people I’ve ever met. Their ability to fight through the pain, find humor in their condition, and their determination to get better is admirable and inspiring.

Please take a moment today to reach out to someone you know fighting a chronic illness to show that you care. Also remember that not all illness is visible so if you see someone park in a handicap space who doesn’t “look” sick remember looks can be deceiving so please be compassionate.

Yours in health, Betsy

Fight the Good Fight

Just over nine years ago I took four pills of generic Ciprofloxacin, an antibiotic in the Fluorquinolone family. Little did I know that those four pills would alter my health to the point I’d become disabled. Previously I’d always been able to rely on my physical health. I was strong. As a mother of three I could lug cases of Gatorade and water home from the club stores, haul 40 lb bags of pellets into the house from our shed in the back yard, and had the stamina to ski all day with my teenage children. Only four little pills would change that for me. Who knew an antibiotic could do that to anyone? I didn’t or I never would have swallowed that first pill.

Even with my changing emotional state over the years one thing has remained constant; I’ve kept fighting to improve my health. With so many health problems I discovered that looking at the most debilitating ones and addressing those first helped me focus on which areas of my health were priorities at that particular time. This is especially important as floxing tends to cycle and change over the years. So I’d work on the worst symptoms and as those improved for me I’d work on the next symptom and so on. It’s proven a good system for me as looking at everything at once can be a bit overwhelming.Over the years that I’ve been dealing with this I’ve gone through a range of emotional states. I began by being defiant and when doctors told me I would only get worse I left them as a patient. I went through numerous periods of wanting to throw in the towel but I knew that wasn’t me. It was just another ugly side affect of the medication altering my personality and changing the happy person I knew myself to be. Eventually I’ve found peace with my situation through prayer and listening to my inner voice. Listening to that inner voice has also helped me with healing.

Even though I felt like throwing in the towel at times (many times actually) I never did. I kept fighting the good fight to get better. I did what I could afford and planned/saved for the therapies that I couldn’t. Did I make mistakes along the way? I most certainly did. Like most floxies I’ve got a drawer of supplements I’ll never use. But I also found things that helped! Things I wish I’d known about early on. However early on I probably wouldn’t have stuck with some of them long enough to find out that they worked or perhaps I wouldn’t have wanted to spend the money back then. I feel that things have happened the way they were supposed to and not necessarily the way I wanted them to. Even at nine years post flox I’ve had some improvements so I will keep fighting to recover.

The last thing I want to mention is that it’s important to treat your body with respect by doing everything you can to support your physical health. To fight the good fight I recommend going as organic (non toxic) as possible. This includes toiletries and cleaners as well as food. I have a good friend who’s very knowledgeable about genetics and systems/pathways in the body who I continue to learn from every day. One of the strongest messages I get from her is to avoid GMO’s and pesticides as they interfere with certain pathways in the body necessary to maintain health.

I wish for you to keep fighting the good fight. Have faith that you too can improve your health.

Yours in Health, Betsy

https://www.youtube.com/watch?v=xo1VInw-SKc

Find Your Strong

In finding your strong I’m not talking about physical strength. I’m talking about character and inner strength. What is it that you can contribute to your family, and society? I was always physically strong before I took the prescription medication that disabled me. When that happened I needed to redefine my life and way of living.

It happened one morning when I was at a very low point in my life. I’d fallen and broken my hip about six months prior. I’d gone through 3 weeks in a hospital and rehab, 3 months in a wheelchair and withdrawals from opiod and benzo pain meds. But that wasn’t all; the surgery to repair my hip involved adding a plate and four screws to the head of my femur to hold it together. Two of those screws were very large and spring loaded so that as the bone healed and “knit” back together the screw heads backed out and into my thigh muscle. The result was that every time I took a step, sat down or stood up my thigh muscles caught on the screw heads and tore. The screw heads were sticking out about 3/8ths of an inch into my muscles and while that might not sound like much believe me it’s painful. One time I had my husband place his hand over my thigh while I took a couple steps and he was horrified at how he felt those muscles catch and pop. And this was from a man who works in a hospital and is occasionally in an operating room.

So after about six months of this I was in bed struggling to have a reason to get up. As I laid there I began praying to God and asking “what can I do with my life?” You see I’d always worked even if it was only part time and I’d run the household taking care of my family. Now they were all taking care of me, I’d been laid off from my job years earlier, and I felt I had no purpose not to mention I was living with chronic debilitating pain. As I prayed I heard “you can write”. Three simple yet powerful words. So I took the next step and began thinking about what I’d write about. I had never thought of myself as a writer and yet here I am. Upon hearing those words I got up out of bed with a new focus; what to write about. It’s been over a year since then but that moment when I heard those three words has changed me. I have a renewed sense of self and purpose. I’ve found myself writing more and more about various things pertaining to my life in an attempt to help others dealing with this. As a result I’ve found my inner strength.

I’ve always been a firm believer in the power of prayer and prayer led me to an inner strength I didn’t have before because as I listened to that inner voice telling me I could write I heard other messages too. Whether you believe in God, some other higher power or not we all have an inner voice. That voice is the reason I began this blog. It’s my effort to help others who are chronically ill and suffering to find their strength. My message is one of hope and to provide comfort in knowing that our lives have purpose and meaning. Life is a blessing and we are here for a reason even if it’s as simple as being a positive loving force in someone’s life. Being positive and loving is more important than being a CEO of some company. I believe this because love is the greatest gift we can give and receive.

Yours in Strength, Betsy

Hope

Hope

Hope is defined as "a feeling of expectation and desire for a certain thing to happen"

Hope to me is living.

Whether you hope for a new job, a friend, someone to love, improved health for you or someone you love, improved finances, improved lifestyle or something else important to you trust that it can and will happen. 

Hope got me through some of my most difficult times.

Hope for a better today. Hope for a better tomorrow. Hope for a better future.

Hope is also defined as "a feeling of trust"

Trust that whatever hardship you have in your life can improve.

Welcome To Betsy's Message

Welcome!

This is a new beginning for me. I've had a Facebook page for a couple of months however blogging is a new adventure so please have patience with me while I get started.

To tell you a little bit about myself I've been struggling with chronic illness for over nine years. It all began after having a severe reaction to a fluoroquinolone antibiotic called ciprofloxacin. Since that time my health has never been the same.  I've had numerous tests over the years and seen a number of doctors in various specialties some of whom were top specialists in their fields. Over and over I was told how I was difficult to diagnose and that whatever I had it was extremely rare. Tests all came back normal or negative. I was also told that there was nothing they could do to help me and that I would only get worse. Eventually I even came away with a diagnosis of a rare neurological disease called Primary Lateral Sclerosis (PLS) in the ALS family of mitochondrial diseases even though I was told I'm missing two key markers for it, one of which is the brain pattern. That is because what I really have is FluoroQuinolone Associated Disability (FQAD) as defined by the FDA. 

One might think that an antibiotic couldn't possibly create chronic illness and I would tell them that I'm living proof that it can. Like so many in our support groups I always believed antibiotics were safe because they were made from natural substances but I've learned that's not true. Fluoroquinolones (FQs) are chemotherapeutic synthetic chemical antibiotics that contain a fluorine atom (a known neurotoxin) added and they are designed to cross the blood brain barrier which is the last place you want a neurotoxin. There are thousands of people like myself suffering as a result of the damage these medications cause and people continue to join our support groups on Facebook at an alarming rate. 

Here is a link to the FDA's write up on Cipro which contains a long nightmarish list of side affects; http://www.fda.gov/downloads/Drugs/DrugSafety/ucm246794.pdf . 

Although it's been a long and arduous journey for me I'm here to say that given the right tools our bodies can recover and heal. We might not return to our former health but many can and do go on to lead a full life. It's important to remember that recovering from FQ toxicity is a marathon not a sprint but we can improve.

Whether your chronic illness was caused by a medication, a vaccine, pesticide or chemical exposure or some other unknown cause I'm here to tell you that our bodies are amazing in their capacity to heal. And while it might seem that its one step forward two steps back some days never give up! A year ago I was in extreme pain, losing my ability to speak, and resorting to hand gestures to communicate. In the past year I've improved my speech, enunciation, and projection as well as my swallowing, reflexes and balance. I've still got a ways to go but as someone very wise once told me; strive for progress not perfection. Healing can and does happen even for someone who's been as sick as I was.

I hope you find comfort and hope in what I write here as I share my journey and messages with all of you.