One year ago Sunday, I wrote an article about being injured by Levofloxacin, an antibiotic. Those who have been affected by this class of antibiotics, fluoroquinolones, refer to these injuries as being “floxed,” short for fluoroquinolone toxicity. The technical name for the syndrome of side effects I am experiencing over a year after taking my last generic Levaquin tablet.
At the time I wrote this piece, for the first time in months, I found myself able to stand on padded shoes in the morning without crying in pain from the searing and burning sensations on the soles of my feet. I could see a light at the end of the tunnel. Within a few weeks, I was certain that light had been the headlight of a train.
Although I had finished a course of physical therapy designed to teach me exercises to keep my tendons as limber as they could be through the changes in the mitochondrial DNA within my connective tissue. In reality, those exercises helped me to keep as active as I could as long as I could.
But the effects that started with fatigue and burning pain and stiffness in all of the connective tissue in my body didn’t stop in February when I wrote that piece. Yes, the pain in my feet began to lessen. But what replaced the pain proved to be more debilitating than the pain itself.
It was almost as if the nerves burned out. Fizzled out. In each of the areas of my body that had experienced extreme pain: First in the bottoms of my feet and my heels, knees, then my forearms, elbows, and shoulders I started to experience tingling sensations and dullness. Neuropathy.
Having neuropathy in my feet was not fun. While within my tiny apartment, it just became easy to fall into a wall and fall from wall to wall. I didn’t leave my apartment for much, so it worked.
In May, my newest granddaughter was born to my baby girl and her husband. Jaina has been a joy to visit with, but my limitations when holding her have broken this grandma’s heart. The strong arms that held my first grandchild 12 years ago now fatigue quickly and I am forced to give up holding her much quicker than I would like.
In August 2018, my mom and I went to Canada. On that trip that I was confronted with the difficult reality that I was perhaps more disabled than my 75-year-old mother. That was a difficult pill to swallow. It gets tough when you want to help your mom, but then she ends up assisting you. Realities can be uncomfortable.
When we returned the effects from driving through the smoke of several forest fires combined with me completely overdoing it to give me my second bout of pneumonia in less than a year. My body was done. I’m still getting over that illness. I have not recovered the level of mobility I had in August. In September I began the process of asking for help.
After last year’s post, I joined many support groups on Facebook for “Floxies.” They were the source of much information. The lists of supplements that could help are long and I won’t copy them here. They work for some, but not others. Personally, I have not been able to tolerate nutritional supplements, but I have received some soothing from apple cider vinegar and Epsom salt soaks on my feet.
The other medication I have used since before being injured by this antibiotic is cannabis. Please follow this link for the recipe I use to replace the Fentanyl and Percocet that doctors had my body dependant upon for seven years. I have been free of opioids for ten years this year. Even in level 8 pain daily, I have found combinations of types of cannabis that work to help manage my pain.
That being said, pain is never gone. Ever. It travels. I’m currently experiencing severe pain in my eyes when I focus. Tendons in the eye, or something else? I’ll go into my reflections on seeing in a future post. Pain is also currently in my toes and back and knee… not to mention that locked shoulder.
Better not to talk about it.
That is the best way I know to avoid feeling pain: Dissociation. I am a master at that. Or perhaps I should say ‘we are.’ Put the pain in a box and get on with life. My current hobby is Literary Theory class. Although the reading requirements make this eye thing quite annoying. Alas, I will be sharing audiobook resources soon!
It’s now been about 18 months since the first pill and the first symptoms. My physician prescribed a power chair in October due to my frequent falls. In November, on the 23rd, while a fall-detection device was on its way to my home, I had my first major fall, resulting in my left shoulder being frozen.
I’m currently in a portable wheelchair, borrowed, while I await the prescribed power chair on order. I don’t stand up and walk unless I am feeling extraordinarily strong and I have a caregiver by my side to make sure I don’t fall.
When I think back to my life, just 19 months ago… camping with friends by a river in a tent. Something I don’t know if I will ever be able to do again…thanks to an antibiotic taken for a sinus infection.
The challenges are not insurmountable, but require me to be sensitive not only to my feelings about the past, but also to my family that remains and my future family. I do not want my grandchildren or further generations hurting or repeating the trauma that I experienced.
Athena has made her place in my life with this skill on many occasions. She has
So, the Facebook Friend’s Tour even included an ill-fated marriage to a proud man who couldn’t understand that I didn’t want him. As you can probably tell, my co dependency that began as a child with my father was not quite worked out at the time my now second ex husband asked me to marry him. Thankfully the divorce was final days before the third anniversary was to be marked on the calendar.
Every choice I make is seemingly up for public scrutiny purely based on my un-housed status. The fact is, before I was using cannabis I didn’t have the energy or strength to get out of bed, let alone travel the country. It was the use of the herb that allowed me my freedom: Once I had conquered the need for physical comfort my options regarding my living circumstances opened up. Until I left that disability bed zoned out on narcotics, I had not travelled hardly at all. Making the choice to travel, to be homeless, allowed me to get out of my home state of Washington and visit the country from one end to the other!
I have HOPE. I live with faith. I know that I have a Heavenly Father who loves me and watches over me. Using that hope and faith, I am working on bettering myself. When I realized that strangers would actually be interested in reading what I write, I took it upon myself to start a program at a college with an online presence, Southern New Hampshire University, to finish my Bachelor’s degree with a focus on nonfiction writing. It was time to learn how to use this gift God gave me.
About 4 years prior to that breakdown, while I was still on Fentanyl, percocet, neurontin (gabapentin), and 16 other medications, a friend asked me if I had ever tried marijuana for my pain. I had used it as a teenager, then as a young adult when I wanted to drink and party with my friends, noticing it’s anti-emetic properties allowed me to drink when I was taking medications I should not have been drinking with (my bad!), but I had put my “stash” far away when I began having pain that completely ruined my life… overtaking every aspect, finally putting me in bed. It was in that bed that I lived. A life consisting of watching DVDs from the library (I could check out an entire season of a television program at a time) and Netflix. When I could focus. When I said to my friend, “but won’t it make me unable to do anything?” She told me to look around at my life. That was a sobering experience. 
were ready to put their license on the line by recommending it (the marijuana alternative to “prescriptions” due to the federal illegality it can not be “prescribed”). So, they referred me to a specialist that JUST recommended marijuana.
Harley Davidson (2002 Low Rider)! Riding on the wind was so much more freedom than I could have imagined. My disabilities still had me bed-bound 5/7th of the week, but for 2 days each week I felt like I was LIVING again!
The paramedics arrived, taking my blood pressure both they and I were surprised I was conscious: 50/30 are numbers I won’t forget. After they loaded me up and took me into the hospital, my husband at the time demanded my release before I could be admitted to a rehab, he needed me at home was the excuse. The nurses looked at me like a junkie. They all looked at me as an addict, not as someone who was dependant on a medication prescribed by the doctor… I felt lower than dirt and went home with a prescription of clonidine (a blood pressure medication to LOWER my blood pressure from the impending pain) knowing I would likely be committing suicide to take it.
My pain was MUCH better, lowering to about a 6 or a 7 within a half hour… then I began LIVING!!! Out of bed, I started looking around me to see what I was missing. I was missing out on LIFE!
Somehow, through the Grace of God, I was able to put my MASSIVE social anxiety aside and get on a train, then a bus and a plane, finally in my own vehicle to visit many of them. What I found was that all around the country there were people like me in pain physically and emotionally who needed a reason to live. A reason and a method to Stand Up To Live. That is why I travel to this day: To show it can be done.
