A Bad Drug

When I returned to my home state of Washington in July 2017, my broken, disabled body was less able than it had been in years. My first order of business was to make appointments with both my primary care practitioner and my pulmonologist.  My asthma had been flaring, causing me to spend at least one day in an emergency room each month to seek breathing treatments.Prescription bottle for levofloxacin 10 days and tablets with prednisone tablets

The result of my July visits was a diagnosis of pansinusitis with a complete obfuscation of ALL of my frontal sinuses. My prescriptions for my inhalers were renewed and I received two new prescriptions, one for a steroid, prednisone, to lessen the inflammation inside my sinuses and an antibiotic, levofloxacin, (generic for Levaquin) to clear the infection.

I was staying with a friend to help her pack and clean the house she was vacating and set about taking my first round of tablets hoping for a quick recovery. That night as I scrubbed the driving callus on my right heel that looked worse than it felt, I felt pain in my heel and ankle felt fragile and odd, but I didn’t do anything except note it in my journal.

The next morning, I felt like a train had hit my body and brain.  My brain was confused and every muscle and joint in my body hurt. However, both of my physicians had made a point of telling me that the pansinusitis was “probably causing me considerable system-wide fatigue and pain.” So, I chalked up these symptoms to my body reacting to me stopping long enough to feel it.

preview-4.jpgAs my body seemed to weaken, I was embarrassed at the lack of work I was physically able to complete. It wasn’t like me. Yes, I need to take a lot of breaks, but I am a bit of a perfectionist where it comes to packing and cleaning, and it was taking me hours and hours longer than it should have. I apologized to my friend.

About a month later, I revisited my pulmonologist who saw no improvement in my infection and again prescribed the same combination. Again, I took and finished that ten-day course. But my sinuses were still completely full and now my joint pain was even worse. Then my pulmonologist referred me to an ear, nose and throat specialist who prescribed Prednisone and Levofloxacin for 21 more days.

I couldn’t understand how a longer course of the same antibiotics I had been on was going to do any good, but I acquiesced took the prescribed medication once again.

I will add, when I filled my prescriptions at the Walgreens’s pharmacy, the only thing that was said to me was “do you want me to throw away all these papers,” referring to the medication information in the bag of my prescriptions.

Two days before my 51st birthday, I traveled to my medical clinic for a follow-up appointment with my pulmonologist as well as an appointment with a new primary care provider. I expressed to both physicians that I was experiencing a HUGE amount of pain in my joints and fatigue that caused me to feel like I had been hit by a semi-truck from the moment I woke each and every day. Each of my steps that hit the ground was followed by knives shooting up my heel and the back of my leg, then into my knee and hips. After a few feet of walking, I wanted to cry. The pain and swelling in my hands, wrists, and arms made any household chore next to impossible.

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Braces made by my occupational therapist. I had to remove one brace to take the photo

 

Both mentioned they thought the tendinopathy I was describing and which my primary care provider had examined and verified in my hands, wrists, elbows, knees, and heels could be the reaction for which the Levofloxacin and its entire family of antibiotics was deigned to carry a “black box warning” from the Federal Drug Administration (FDA). A “black box warning” denotes a serious reaction history and a limitation from the FDA in a medication’s usage. In relation to the class of drugs of which Levofloxacin was a member, the warning was issued almost one year to the date of my exposure. It read:
“Because the risk of these serious side effects generally outweighs the benefits for patients with acute bacterial sinusitis, acute exacerbation of chronic bronchitis and uncomplicated urinary tract infections, the FDA has determined that fluoroquinolones should be reserved for use in patients with these conditions who have no alternative treatment options. For some serious bacterial infections, including anthrax, plague, and bacterial pneumonia among others, the benefits of fluoroquinolones outweigh the risks and it is appropriate for them to remain available as a therapeutic option.”preview-3.jpg

My pansinusitis was not anthrax or the plague…however, I have multiple antibiotic allergies and have reacted to many different medications. Due to this fact, my physicians rationalized it would be okay to risk my well-being because of an infection that was not fatal. In fact, I had that same active sinus infection for months before any treatment. However, after the prednisone and levofloxacin, I felt worse than I had EVER felt with the infection.

As days turned into weeks, then months, I started to cry when my feet hit the floor and it was not only not any better than the day before but felt like it had gotten worse. I was no stranger to chronic pain, having been through the gauntlet with chronic pelvic pain for decades and back pain for years. I had written REPORTS about chronic pain and cannabis. I KNEW the timeline of pain. I KNEW when pain becomes chronic, the brain changes. Although my body and brain had already gone through that process for a few injuries, I did NOT want that paradigm to repeat with BODY-WIDE pain!!

My nights were not restful at all. I would roll to one side and my elbow would feel like it was full of glass pieces and if I rolled onto it, they would only go deeper into my flesh… The other elbow was on fire. My wrists and hands swelled making typing insanely difficult as my Master of Arts program began in late November. Although I had some accommodations in place for my previously diagnosed limitations, I found myself utilizing the dictation software. It was frustrating and ineffective, to the point I reached out to an online group for my university and a wonderful undergrad student offered to type my dictation over the phone.

IMG_20150909_123512744For the pain, I was limited to cannabis. I will not use opioids after having been in recovery from them for the last 8 years and the other issues with the other medications prescribed for pain are what caused my physicians to initially recommend cannabis as my medication.

I’ve been working on recipes for topicals and bath bombs with this pain. A foot soak with a tablespoon of cannabis-infused coconut oil and Epsom salt is a good substitute when I don’t know if I can pull myself out of the tub.

I wanted to do something more to assist my own recovery, but I feared to damage my tendons more. I read about microcellular damage inside of my tendons and feared them tearing or worse. I requested physical therapy for my body and occupational therapy for my hands to get me started. My psychotherapist was also used to assist with the mental confusion caused by the medication interaction/injury.  Throughout this last December and January, I had therapy appointments three days a week! Still, every morning, as I put my feet out of bed and onto the floor, the pain would shoot up, and I would cry. Like the mercury in a thermometer that has been placed in boiling water, the pain shot up my heels. Yes, worse again.preview-1.jpg

I was in the middle of my finals week for that first term in my Master of Arts program when I woke up, put my feet on the floor, and …. It was about the same as the previous day. The next day, after my exercises and stretching, it almost felt better. I was reluctant to hope, but I had stopped crying. At this point, it had been over six months since the first prescriptions.

The occupational therapist confirmed the swelling in my forearm and wrist had lessened. Two days later, the physical therapist confirmed that my Achilles’ tendons had more movement. FINALLY!

I’m FINALLY on the road to recovery. I have never developed so much empathy, so quickly, for any group of people. I have many friends who have chronic illnesses that come complete with body-wide intense pain. I wish I didn’t have to know, but I do understand comprehensively at this point. I am looking forward to healing from this injury and spreading the word about this medication and its PAINFUL interaction with prednisone and some people’s chemistries! Levofloxacin is a BAD BAD DRUG!preview-2.jpg

 

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Get Thine A$$ Outta BED!

I have written many Facebook posts that started with the quote, “To Stand UP to LIVE you must first get thine ASS outta BED!” or something similar. Today felt exactly the same way.

On days when starting is like pushing through a bog of mud …this time in my face… I am compelled to wonder if that is why I don’t currently have a bed. I spent nearly seven years in bed. Added a few months here and there over the last three years, and you could say that I wasted nearly a decade in bed. So, now I have lost the privilege to have one, or so it seems on mornings like these.

I know I am not the only person to hide from the world in bed.  The smaller and more advanced technology gets, the easier it it to take to bed with us.  Then those of us introverts who would rather complain about the people around us than to interact with them, hide.  It isn’t just “hiding from the world” that is done in bed…it is also the fact that sometimes a person with chronic pain (like myself) only finds a “comfortable position” in bed. But is life about “comfort?”

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The puppy cuddles me

There are many days that I don’t think I can continue, when everything seems too difficult. This morning, the half-mile drive from the Wal-Mart parking lot where I stayed the night, to the library where I needed to spend today working on my schoolwork and writing, seemed to involve much more cognitive power than I felt I could muster. The dogs were restless, so I walked them. But even the energy to feed them seemed to be escaping my grasp.

So, I prayed. Then I spent some time with Christ in the Gospel of Matthew. Matthew’s words have been a comfort lately. While being bullied online, the words, “Love your enemies, bless them that curse you, do good to them that hate you, and pray for them which despitefully use you, and persecute you” from Matthew 5:44 (KJV) were EXACTLY what I needed.

I found the strength in those words, and a comfort that enveloped my soul, to continue. I may not be the person I once thought I was, but I am much better than I ever imagined I could be. Every day, every hour, out of my bed is an accomplishment. Every time I turn in one more assignment towards completing my goal of finishing my Bachelor’s degree, I am closer to becoming the person I want to be.

Sometimes, I’m thankful to be without a bed.

 

 

Homeless NOT Hopeless

Quick Rewind

In my previous post, Transient in Trump’s America, I briefly gave you a glimpse into a few of my choices and my current circumstance. The feedback I received was generally positive except for some highly charged opinions about my choice of title. Apparently it is okay to write about being a transient as long as you don’t mention the current president’s name. My choice to use the “keyword” to “trend-jack” was a marketing decision made in conjunction with learning that technique in class. I was making reference to times and places, since I had listened to the radio news talk about the President’s (he who shall not be named?!) visit to the same county I was currently homeless in. It was included purely for perspective, not as a political statement.20161108_132908_hdr

Perceptions vs Reality

What does it mean to be looked at by others as homeless? Add physically AND mentally disabled, and what image does that conjure up in your mind?
Do you automatically think of someone or a place?  Many people think of homeless camps or transients on the street. In Orlando, Florida, it appears to be commonplace for panhandlers to carry signs walking through 8 lanes of stopped traffic at each major intersection. When there is an accident ahead, they have a captive audience for their begging.  But just because someone is panhandling doesn’t mean that they are homeless.

When you are homeless, others who have residences feel that it is their job to judge you. For example, many people have had much to say about my choice of medicine. The fact that it alone replaced 20 different medications doesn’t seem to faze the people who would call it a “drug” and say that if I wasn’t on “pot” maybe I would have a home. Considering the facts, that is not only painful to hear but frustrating to reiterate my justifications for my choices. sugar-ah-ah-ah-ah-ah-ah-awww-honey-honeyEvery 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 remember when I was travelling on a train for the first time in Florida. My Amtrak train incurred a “trespasser strike” right outside of Orlando, in Winter Park. When I heard the term “trespasser strike” I automatically thought there were pickets on the train track. Unfortunately that was a HUGE misperception. The train that I was on, which just picked up a load of children and their families from the Disney World area, had hit a person. He was killed. The only way he was ever identified in the news reports was as “a transient in his 40s.” Eventually the press added the descriptive, “hispanic,” but he was never identified publicly.

Being a bit of a sensitive person, I felt the energy. I felt the fear and confusion and frustration of all of the children around me. I felt the aggravation from their parents; they wanted to move on down the road, and the mandatory 3-hour investigation was delaying that from occurring. I also felt a kinship. “transient in his 40s” was too close to home for me. After all, the only difference in that description from him and me at the time was the pronoun. 1489967004930

The thought that I could be killed while travelling and it be described as “just another homeless person dead” was horrifying. Had I become a “non-person” just because I chose not to pay for a residence and travel?

Is “homeless” a dirty word? Perhaps not, but it seems to strike fear into the most compassionate. I suppose that it is the fear of knowing that every time they are late on their mortgage or rent payment, they are one step closer to being one of them. As I listened to the reactions to my first story “coming out as homeless” I observed many knee-jerk reactions telling me I should seek help at a homeless shelter without respecting my choice of having my dog with me and living in my car. I also found it interesting that others reacted with admiration. Why would anyone admire me?

Featured Image -- 327I 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.

My books, Standing Up to Live and Medical Marijuana for Mormons are well in the works. I fought for quite some time about “coming out” as homeless; I didn’t want to be known as homeless or transient. Then I prayed about it and the Holy Spirit witnessed to me that Jesus Christ Himself had been without a place to lay His head. Perhaps it was time to make others aware that being homeless does not mean we are scary or bad people. It means nothing except the fact we currently do not have a domicile to call our own. The person inside is still the same as if we did. That is why we can “hide” in plain sight.

The next time you see someone leaving church or a grocery store, don’t assume they are going to a home, the statistics are staggering: Over a half MILLION people in the United States are homeless.  If it doesn’t include a family member or a close friend, perhaps that person you saw use the bathroom at McDonald’s was going out to sleep in their car. You don’t know because we don’t want you to. We, the homeless, hide from your judgements and your fears. Those fears used to be ours, now we not only live them, we are learning to conquer them. img_20160717_112738312

I go to church at a Ward or Branch of The Church of Jesus Christ of Latter-day Saints whereever I am staying at the time. I have been blessed with Relief Society (women of LDS) Sisters offering me hot meals and even an overnight inside. The generosity has at times overwhelmed but humbled me. I long to be the one giving, I am so tired of needing to receive. I look forward to a time when I will be able to give. A time when I have achieved my goals of “working myself out of retirement.” My dreams are many, but they have one theme: To help my fellow person. If I can share my hope and faith with anyone that will be a start!

 

Standing Up to Live

When my physicians “discharged me without notice” flinging me headlong into massive withdrawals from some of the strongest narcotics on the market, I thought my life was over. My blood pressure reading when a paramedic was called by my Facebook friends echoed that assumption. 50/30 is not the blood pressure of someone who is doing well at living. Six months later, I was dancing with a Saint, celebrating a life I didn’t understand ahead of me. But I knew I was alive. That was something of a miracle.

In a pool of vomit and other detritus that any self-respecting adult would be embarrassed to be found in, in level 10 pain, I prayed. I prayed to a God I didn’t know if He knew who I was. I called out in tears, “PLEASE HELP ME!!!!”   He did.

look-into-my-eyes-what-do-you-see-001About 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.

Once I looked at the life that had been crumbling before and around me for the previous 3 years, I thought, “what can it hurt?” After all, the mind-numbing narcotics and antidepressants and antianxiety medications had made me nearly a drooling idiot, what more could marijuana do? Hey, maybe I could “get high” and stop thinking about the pain? Either way, it was worth a try. 11182775_1624731581136715_86556055208525763_o

I tried it, and it worked. This was in 2006, two years before my youngest graduated high school, four years after my physical disabilities had taken my permanent employment from me, 10 years before I was to learn about the emotional and mental disabilities that had been haunting me my entire life. Before 2006, I had been heard to say on several occasions that people were just using the “medical marijuana” excuse to get high. God proved me WRONG on that account. 

By 2008, while I was still using multiple opioid and other medications (19 of them, total), I found “breakthrough pain” relief in cannabis, marijuana. I talked to my urologist and internist (my primary care physician) and they both agreed that the changes they had seen since I had been using it were positive and they agreed with me using it, but neither of them sugar-ah-ah-ah-ah-ah-ah-awww-honey-honeywere 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.

I met her in a hotel conference center with my $200 and a large file full of my medical records. After completing a short exam and reviewing my records, I was given a paper that allowed me to have an “affirmative defense” if I was ever in legal trouble for my use of marijuana. At that time there were NO dispensaries and I was left to find my own supply of medicine from the streets.

In 2008, one ounce of fairly decent bud would range from $250-$300. I needed at least that for a month. But that was a lot of money to someone living on $900 in disability. I made it work, running out nearly every month towards the 25th of the month. But the difference in my abilities was ASTOUNDING!!! Not only could I get out of bed, but I learned to ride a bug-catchin-on-2002-low-rider-damn-fun-2009Harley 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!

THEN, in August of 2009, I felt like I was dying. Around the 20th of the month was when I would make my monthly trip to Tacoma from Olympia, Washington to visit my urologist for the purposes of picking up the paper script for my Fentanyl patches and percocet. When I arrived at the doctor’s office, I was told that I had been “discharged;” I was no longer a patient of that clinic. They claimed to have sent me a letter, but it was never received.

I began to panic. The 3-day patch on my arm was my last and I was on the last day of it. Even the idea of withdrawals from an opioid 100x stronger than morphine scared the living daylights out of me. The reality sent me into a panic like none I had ever experienced before. Although my diagnosis of Dissociative Identity Disorder wasn’t to come until 2015, my symptoms were in full swing, causing me to lose more time than I could remember during frantic panics and pain.

The next few weeks were physically and emotionally gruelling. My body and brain gave out completely: days and nights blended together as I lay on the carpeted floor of the bathroom not knowing what end should be towards the commode when both needed to be. I felt like I was in absolute hell. This continued for days until a Facebook friend heard my pleadings and worried about me, called 911.

3209497472117The 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.

It was the 25th of August, 2009 and my monthly ounce of cannabis was long gone. One of my personalities hid my pocket knife from me… as my nightmares continued day to day. After the spasming in my legs and the pain in my body and brain evened out to a “normal” of about a 8-9 waking level on a scale of 1-10, I tried to do my best to get on with my life. I had lost about 40 pounds during the withdrawals, and looked emaciated to my family and friends. In March 2010 I met a man who taught me how to maximize my cannabis medication by infusing it into butter in addition to smoking it.

The first time I ate a cannabis-buttered piece of toast, the difference was unbelievable! green-grilled-cheeseMy 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!

My last child had “flown the coop” in June of 2009, moving in with the man who would become her husband within a few years. I left my husband and the confusingly abusive relationship with him (and parts of my brain I wouldn’t begin to understand for 7 more years) in March 2010; by October 2010 I was finally recovered enough from the physical trials to start exploring. My Facebook friends who had saved my life the previous year by calling 911 continued to bolster me and invited me to visit them all across the country.

12027761_854199591361628_1229843056908513068_nSomehow, 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.

As I travel and talk to people, learning more about humanity than even about the herb I have spent the last 7 years researching, I have found not only a following, but deep friendships that I could not live without. As I continue my goals to write my books and then develop the “Lightehouse Recovery Center Network” (a holistically-based wellness recovery center network for the disabled with a focus on hemp production and use), my focus is on helping others to “Stand Up to Live.”12004115_843631165751804_1709398889653203692_n

While reading a children’s book on writing, I came across the quote, “How vain it is to sit down to write when you have not stood up to live.” By Henry David Thoreau, A few weeks after I read it, I saw Mr. Thoreau’s name on a report by Relative Finder as my distant ancestral cousin.

I took both of those instances as a sign. The quote that so perfectly described the decision I made almost 7 years ago was destined to influence the title of my journey.

“Standing Up to Live” is the title of the book I am writing about this journey. I prayed to know what to do then I used that faith I had hiding in the back of my soul, followed the impressions I received from God, through the Holy Spirit: I stood up and I began to live; Now I share that life in my writing and photos. Thank you all for being with me on this journey, I could not have done it without you!!!