The Wounded Animal

Anyone who’s ever watched a nature show has probably seen a wounded or trapped wild animal and people who’ve tried to help them. There are usually a couple scenarios that happen. In the first scenario the animal struggles but somehow recognizes that help is here and doesn’t attack. In the second scenario the animal tries to defend itself but once freed recognizes the help and runs away. In the third scenario the animal puts up a vigorous fight; clawing and snapping at the very people trying to help the animal.

Over the years that I’ve been floxed and involved in the support groups I’ve met many different people that I’ve reached out to. Initially it was for help and then eventually to try to help others. That’s why I began this blog. It’s one of the ways I try to give back to the community that helped me many years ago when I was struggling and injured. Over the years the various reactions of other floxies have been much like the reactions of a wounded animal. Most are appreciative of the help, others are frightened and some lash out in anger and fear. Just like the rescuers of a wild animal I recognize that those who lash out are angry, frightened, and lack understanding of what the “rescuer” is trying to do. These are the people that often need help the most and yet they tend to push the very help they need away.

As a floxie and one who lives with chronic issues I’ve found those who push us away often need a compassionate response. I’ve found when they lash out my knee jerk reaction is a defensive one. However I take a breath and respond to them with the knowledge that they are in pain, suffering, angry, and frightened. In doing so I can calmly let them know that I don’t deserve to be treated poorly, was only trying to help them, and then I wish them healing fully prepared to distance myself if only for self preservation. But what I’ve found is that same person that lashed out at me will often step back, realize what they’ve done and apologize for it.

It’s important to mention that when someone does lash out it hurts. No matter how far out from floxing and the amount of recovery one experiences. From the perspective of a long time floxie who’s come to terms with what’s happened to them it’s still upsetting when you try to help someone and they take out their anger on you. So I’m not telling anyone to put up with being treated badly. I’m merely suggesting that you try to understand where they are coming from and respond with compassion. I’m also saying that for those that behave like a wounded animal and lash out please remember that those you strike out at are sick too. Please put yourself in the other person’s shoes for a minute. Ask yourself if you’d like to receive the message you’re about to send before you send it. If you feel it’s harsh then stop. Don’t send it. Tone it down and remember that the recipient deserves to be treated with compassion. We all do.

There can never be too much compassion for others in this world. Remember even if you think you’re worse off than someone else it doesn’t mean the others aren’t suffering too. It merely means their issues are different from yours. Not better or worse just different. Also remember that they may have issues that they aren’t telling you they have. Issues you know nothing about. Respond to people with kindness and they will often respond the same. Respond to people with anger and… I’m sure you get the idea. Once again; there can never be too much compassion for others.

Yours in Health and Compassion,

Betsy

Holiday Survival Guide

As the holiday season approaches I think of how nice it will be to see my friends and family. I also acknowledge how stressful all the social gatherings can be. Over the years I’ve developed ways to cope with the chaos and my physical limitations which I want to share with those like me suffering chronic health issues.

The first thing that I think of with the holidays is stress. As much as the holidays are about joy, friendship, and love so too are they filled with stress for those of us dealing with chronic illness. When you’re struggling with functioning on a normal day the added organized chaos of the holidays can be overwhelming. I recently read a book that touched on coping with stress. My take away from it and what I now practice is a process of acknowledging stress when I feel it. I say “Hello stress”, smile, and mentally embrace it. I say “I know you are there” and then add “thank you for letting me know I’m alive”. I find this simple acknowledgement reduces its power over me and I go from a feeling of dread and anxiety to one of peace and looking forward to doing what was making me stressed in the first place. Please try it and let me know if it helps you too.

Before I became ill and as a mom of three boys the home was my domain. I did all the shopping, cooking, cleaning and laundry as well as working and volunteering. I’m no longer physically able to do those things so I enlist help and I recommend you do too. As an example my husband now cooks dinner as I’m limited in what I can do. So this past Thanksgiving I thought about what I could do and what we needed. We hosted a small gathering at our house which meant cooking a full meal and desserts. We love pie so two days before I enlisted my husband’s help to make pumpkin pie. Then the next day I enlisted my son to peel the apples for apple pie for me and had him there to assist me as I put it all together. Next I had him put it in the oven for me and when it was done he removed it to cool. The next day I peeled what potatoes I could and when my hands started cramping and hurting I stepped aside, had my son take over and directed my other sons to set the table. It turned into a real family affair prepping for our dinner and it was one of the nicest meals I’ve ever had.

How we got ready for Thanksgiving in our house brings me to my next tip for survival which is to pace yourself. While it seems a simple concept it’s very easy to get swept up in the commotion and forget this important tip. How I’ve learned to accomplish this is to schedule things in such a way that I have some down time to regroup and recover between activities. This is very important when dealing with chronic pain and fatigue. It allows you a chance to put your feet up and give yourself some time before you tackle something else. It also ties into how I prepared for Thanksgiving as you might have noticed I didn’t try to make two pies in one day but rather spread them out over two days. And then Thanksgiving morning when there were more able bodies around we put them to work. We celebrate Christmas in my house and I’ve had a request to make my raspberry white chocolate cheesecake which is a labor of love. I made this before I got floxed but it is time consuming and physically demanding so for years I stopped making it even though the requests kept coming. So now I make the raspberry puree before I make the cheesecake as it requires pressing raspberries through a strainer to remove the seeds. It’s time consuming and often causes my hands to cramp and become painful. However I’ve found that if I do this the day before then I’m good to do the rest the next day. I’m all about pacing myself now and I’ve found doing so helps me to get through the holidays in pretty good shape.

I’ve also learned to adapt my expectations. By this I mean I’ve adjusted to my limitations so I know what I can do and what I can’t and my family has as well. When someone offers to help me by getting me something to eat or drink I let them and am thankful for it. While this might seem a simple thing it’s an important one. You see I used to be so independent and capable that I didn’t need help because I was the caretaker. The roles have changed however and now I’m the one who needs help. Learning to accept help was difficult but I have adapted and now do so graciously.

And last but not least if you need something let people know. If it’s the comfortable chair in the room and you’re in pain and need to sit down then ask politely if you could use the chair for a few minutes. If you’re thirsty or hungry enlist someone to get you a drink or food. Or if you need to lie down somewhere quiet for a minute do that too. If you’re at a social gathering and are feeling rundown and know you have a commitment tomorrow then say your thank you’s and head home. It took me time to get to the point where I spoke up when I needed something. For a long time I tried to push through and do things myself but I found that it didn’t work out well so I’ve had to change. We spread out our commitments to what I can manage and I ask for help and try to state my needs more clearly.

So pace yourself, enlist help, adapt your expectations, ask for what you need, and acknowledge that the stress you may be feeling lets you know you’re alive. Recognize that feeling stressed means you’re living life in all its beautiful chaotic glory and be thankful for it. It’s amazing how simply acknowledging it in a positive way defuses the anxiety and worry that often goes hand in hand with feeling stressed. If you’re still feeling anxious squeeze those limes and drink the juice for some help with anxiety or pause for a few minutes to do some deep breathing and meditation to help you relax.

So try to enjoy this holiday season and embrace the love of being with family and friends with all the craziness and commotion. You can do this!

Yours in Holiday Spirit,

Betsy

Message From A Stranger

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

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

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

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

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

Yours in Health,

Betsy

Mind Over Matter

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

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

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

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

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

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

You Are...

You are still you.

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

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

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

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

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

Blessings,

~Betsy

Back to School

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

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

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

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

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

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

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

~ Betsy

Should I or Shouldn't I

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

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

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

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

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

Yours in Health,

Betsy