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SNOWPOCALYPSE2019: Western Washington Buried in the Snow!

One part that hasn’t always been the most fun about living in the Pacific Northwest, is that there is rarely snow. We get a couple of inches here and there, usually in November and February. I gave birth to both of my February babies during snowstorms in 1986 and 1990. I love the snow.

I didn’t love being without power during the snowstorm for most of the weekend. But I did capture a good amount of pictures for all of my readers! Now that the snow has evolved into huge piles of slush making everyone’s lives torturous…Enjoy these memories of the snowpocalypse!

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Revisiting A BAD Drug – One Year Plus After an Antibiotic Injury

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.preview-5.jpg

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.

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The paraffin the occupational therapist used on my hands looked weird but felt wonderful

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.20180522_022642_HDR

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.

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Photo by Joan Slighte

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.IMG_20180209_233946497.jpg

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!preview-2.jpeg

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.IMG_20170906_171505_253.jpg

Asking for Help

Last August and September, when the physical effects from my second bout of pneumonia in less than a year would not cease and desist and this current episode of Major Depressive Disorder was well underway, I became unable to do many of the things that I count on being able to do to be me and run my home.

Ruger’s got me

What happens when a disabled person can no longer care for themselves and their home? Asking for help seems simple, perhaps, for those who’ve never had to, but for those of us who are used to doing for ourselves, it is quite complex.

The first part of the process was as simple as checking a box when I reapplied for assistance with food and paying my Medicare premiums. I checked the “Home Health Care” box on September 2, 2018, with much trepidation. I wasn’t sure what to expect next.

The screen has changed slightly since I applied six months ago

When I hadn’t heard about the “Food Stamp” part of my application by the end of the week, I went to the office. I was told since I had checked the home health care box, my application had been transferred to a neighboring county. I was perplexed.

After some bureaucratic shuffling, my food and medical parts of the application were transferred BACK to my home county for expedient processing. I was granted Food Stamps and assistance paying my Medicare premiums. Then I waited to hear about the other box.

In late September I received a phone call from a woman around 6:20 at night, who identified herself as a Case Worker for the Lewis-Mason-Thurston office of Washington’s whatever office… I did not recognize the acronym she specified. I was already discombobulated by receiving such a call after 5pm (what can I say, I take off my headset at 5, figuring I am done with “business calls”… sigh), and I answered in a manner that reflected such.

 

Now I was astonished. It had taken three weeks for this phone call, responding to what I considered a “scream for help” to have it considered by the ONE PERSON who actually received it as ‘a mistake.’

She asked, “Did you check the “Home Health Care” box by accident?”

The tip of a wooden cane on the floor

“No, it was not a mistake,” I answered. “I need help desperately. I have not been able to recover from this pneumonia and I need help. I am having trouble bathing and dressing myself and I’m even missing church in spite of having a Dial-a-Lift ride set up.”

She answered in the affirmative and continued with my application. My home assessment for my application was scheduled for early October, about a month after I ‘cried for help.’

The evaluator was pleasant. I easily forgave him for indicating that my canine service companions were “gigantic dogs” on the assessment when he did accurately indicate the services they perform for me (in spite of being, technically a “medium” and “large” dog respectively). Mr. Evaluator had my evaluation (that indicated I was barely functioning with assistance from church friends and relatives) input into the system by late October.

Dog toy between the wheels of a wheelchair on the floor

I continued to wait.

My physician was angry it was taking so long. In mid-November, she ordered a different sort of Home Health Care. I had been unaware there was more than one type. It was so nice to finally have a bath-aide come in and help with some of the most difficult parts of being disabled.

Ironically, on the date of my first major fall (not just “ping-ponging” my way into the walls on the way to the bathroom), a device was delivered to notify my doctor’s office when I fell. They delivered it an hour after the fall that jammed and froze my shoulder. My doctor then prescribed a power chair.

When it was discovered that I leave my home for church and medical appointments, I was deemed “non-homebound” and the device was demanded back. The bath aids and physical therapist who were coming in every week for three weeks ceased. I was not eligible for THAT type of care.

I was offered my first caregiver, a person who had never held such a position, in late December. She had retrained after having worked as a bartender. She worked for 6 days before she called (14 hours before her next shift) to say she couldn’t come back to work because she couldn’t afford the gas to make the journey from the coast where she lived.

I spent Christmas and New Years without assistance. I spent a lot of time in light housecoats, being cold. My heating bill is skyrocketing.

In mid-January, a new caregiver started. Unfortunately, she did not work out. Yelling at me during a bath just adds to my menu of triggers. Yeah… Nope.

The next caregiver presented herself as having experience with mental health issues, then proceeded to gaslight me. Then, I spent an inordinate amount of time in my therapist’s office wondering if having a caregiver was worth it. I almost wish it wasn’t.

Face it, we ALL want to live long enough to become disabled, but NONE of us wants it to happen to us when we are still “with it.”

I succumb to the assessment that I am “hard to handle.” My mother and my first husband made a point of saying for years that “no one could handle [me].” Now that is getting in the way of “me” being “me.”

I have recently interviewed two ladies who I would like to work with me as a team. I pray to my Heavenly Father that the broken pieces of “my MEs” can play nice and allow things to be taken care of. Seriously. I’m tired of being naked and the dishes are piling up.

My Choice

A lot of people are talking about choices right now. Many people are angry. Others are upset about “rights,” who has them and who does not, or who is a human and therefore has rights and who is not.

I felt it was time to share the choices I have made.

Maggie as a small child, smiling

As a young woman growing up in the early 1970s, I was exposed to a society yelling about my rights. Of course, I wanted rights! Yes, of course, I didn’t want anything to happen to my body that I did not have control over (let us ignore the fact that all throughout my childhood, I was experiencing exactly that since I was the victim of sexual abuse from a very early age). I agreed with all of the rhetoric that screamed about my right to choose what happens to my body.

Then I got pregnant at 16.

The woman who was supporting my father at the time demanded that I get an abortion. My father became offended, saying the pregnancy was “his grandchild,” and I was confused, yet thrilled that the doctors who had told me I would have difficulty conceiving after many medical issues (from the early abuse) were wrong.

After a tumultuous nine months that included changing my own custody to join my mother leaving my father alone, crawling back to the woman he left to “save his grandchild from abortion,” I gave birth to my first son. During the pregnancy I voluntarily underwent counseling for adoption. Then, when he was born, I took parenting classes with my baby.

When my first son was nine months old, he weaned himself from the breast. I believe that was the emotional inspiration for the conception of my second child. But at the tender age of 18, I did not think I was ready to cope with being the single parent of two children.

I made an appointment for abortion counseling which would be followed in two days by the surgery. I was approximately seven weeks along.

The day came. I took my infant son to daycare, just as if I was going to school. Then I got on the bus to go to the abortion office.

I hadn’t eaten at all that day. I couldn’t stop the nausea, it seemed even worse than normal. As I looked out the window down Harrison, I saw the building where I knew from the protest signs, held the office where I was going.

Suddenly, I felt something in my lower abdomen. A shutter? A shake? A “quickening.” I felt what I knew was my second child’s soul enter his body.

I stayed on the bus.

18 and pregnant with my second

Then came the difficult part of admitting to my family that I had gotten pregnant once again. I was going to be a single mother of two at the age of nineteen. On February 14, 1986, my sweetheart of a second son was born.

While raising my children, in SPITE of the fact that I was completely upfront about the above story with my family, I also taught my children that it was a woman’s right to choose what happens to her body. I continued to stand up for the legal rights of women to choose to abort their pregnancies.

I didn’t change that viewpoint when I was Baptized in 2013. I considered it. I prayed about it. Then, I read a story written by a woman who had survived her mother’s choice to abort her. She asked, “What about her choice?”

Abortion and childbearing are very emotional topics. Sexually active women struggle with choices. No one responsible makes these choices without a lot of consideration and more often than not, a lot of tears.

Personally, I am thankful that I am no longer sexually active. I made a choice to be celibate until and except within marriage. I am also long past the age of unintended pregnancy. So, in that respect, my choices have already been made.

Do I want the world to go back to a paradigm of women dying by hangers in the alley? Of course not. I DO want my granddaughters to think carefully about all of the consequences of sexuality BEFORE they choose to make that very large leap. I DO want all people to understand that sex is far less casual than it is portrayed by the media. There are repercussions.

I wouldn’t trade either of my boys or their children

I also hope and pray that we, as a society, become more charitable with our feelings towards those who behave in opposition to our or even their own, beliefs. I pray that we as a society start FEEDING the HUNGRY and HOUSING the HOMELESS, especially the children. These are URGENT human rights concerns.

I am heartbroken by the tears of so many of our population right now. We have differing beliefs, we all come from different backgrounds that formed those opinions. We feel strongly about those beliefs and opinions. I only hope we can learn to respect one another and learn from each of our experiences.

A Darkness Within the Light

About a week ago, I asked my therapist how long this particular Major Depressive Episode had been going on. Without a pause, she answered, “Since the summer.” I could have saved a bit of time and checked the publication date of my last blog post — on ALL of my blogs. I have not written except for assignments for school, since summer.

“Since summer,” the words rang in my head.

I thought back to summer. My summer was great! In July three grandmas (including me) took four grandkids on a ferry boat to Vashon Island where I spent some of my teen years. Then, in August, my mom and I trekked to Alberta, Canada to see the area where her mother was born. We also drove back through the forest fires in British Columbia, resulting in my second case of pneumonia within a year. This time I was not to recover nearly as quickly as I had the previous Christmas.

As the infection abated in early September, I found I was not able to physically care for myself. The symptoms I thought were lessening from the Fluoroquinolone toxicity had started again to worsen while we were in Canada and kept getting worse until I could barely lift my left arm. My left shoulder was “frozen.” 

I finally requested help. I had no idea AFTER you humble yourself and ask for help, it can take literally months before help arrives! I applied for home health care through the state process in early September. In November, my physician was fed up with the lack of movement on my case and made her own recommendations and referrals. It was interesting being the subject of “Adult Protection Services” at the mere age of 52. 

“Carrie the Caregiver” and me celebrating “Blue Friday” #GoSeahawks

I sit here now, on December 15, finally having employed a wonderful home health care assistant with the help of my local assistance office. I have left a large part of my privacy and pride far behind as I am venturing into the life of having a “PCA” (Personal Care Assistant). But I am finding that I am also making some great new friends as well as getting my life back.

Another change will be coming soon. After suffering several significant falls (not just saying “hello” to my good friends–my walls), my doctor has suggested that I sit down. The pain, numbness, and weakness in the tendons of my feet and legs have progressed to the point where a powerchair has been prescribed. I will make sure to post with photos when it arrives!

Jaina Anita Ellen Capley Grandchild #4 (Photo by Siobhan Capley – Jaina’s mama)

This holiday season has been a dark one for me, but I am coming back into the light.  This will be the first Christmas for my newest granddaughter, Jaina Anita Ellen Capley, and I plan on enjoying her and the rest of the grandchildren to the fullest!

I hope everyone reading this has a wonderful holiday season. Please don’t let the shadows pull you in. 

Friends: Reaching Out — Reaching In

Maggie and Vin

The bright sunlight through the burgundy bedroom curtains made the dark bedroom seem like a redlight district. I’d been living out of bed for over seven years as of 2009. Brief weekends out of bed were followed by weeks of recovery from the exertion. I curled up in a ball around a tiny screen where I would communicate with my friends on Facebook. My phone was anything but smart, and it cost a modest extra fee to be able to have web service on it. But the access to a society who would laugh at my ironic jokes and understand my pain when I couldn’t sleep at 2 am was something I deemed a justifiable expense.

Cell phone

My daughter had been accepted at the University of Washington in the Fall of 2008 and as part of giving their students a way to get to know their roommates, the school suggested new students start a Facebook account. When my daughter was home for winter break, we sat together on my bed as I signed up for my own account. I thought it would be a great way to keep in touch with the daughter I missed.

Some of my friends are quite witty. One of those friends had acquired friends from the online community, meaning “friends” he had never met in person. At first, I was very apprehensive about accepting “friend requests” from people I had never met. But soon conversations and jokes carried over from the friends I did know in person and

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Me & Maria Mills Greenfield (who passed 1-19-2017)

I felt like I knew people from places across the country and even the world. Places hundreds of miles from any I had visited.

While laying in bed in pain, I composed quick thoughts and shared them. It became a release. When people began to respond, I felt I had found friends in the darkness. I connected with other people who were isolated for different reasons. Many of us were dealing with pain. Chronic, neverending pain.

While certain members of the federal administration seem to do anything EXCEPT validate chronic intractable pain, that type of pain is exactly what isolates and literally cripples people, making them incapable of living their previous lives.

Many people responded to the dark comments my mind and thumbs combined to leave on other people’s posts. Quickly I accumulated a large list of friends.

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In October 2010, I decided I would rather take up my friend’s offers across the country to stay a day or a week, rather than rent a room in the gray dark winter of western Washington. I had only seen a few states of the country I lived in and a divorce after over 20 years of marriage was a great reason to explore. Many of my friends made plans to welcome me.

This last week, I lost another friend. It seems the death notices come more frequently now than they ever did. Many of the friends I met during my travels during the years from 2010 to 2017 are no longer around. Their absence in mortality does not lessen their effect on my life. In fact, the more friends who pass, the more grateful for all of them and the ways they changed my life and my attitudes.

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Vin Arnone (2014)

At some point, I will write a detailed memoir, introducing you all to each of them…those who are no longer here. For now, I will say, I would not be around if not for my friends. My friends on social media pulled me out of several seasons of depression. These same people called 911 in 2009 when I was suffering withdrawals after a doctor prescribing me Fentanyl and Percocet discharged me without notice. My friends have saved my life in many ways and on many occasions.

Because I have been the recipient of such generous attention, I know the power of social media. I know when you just need someone to talk to, usually, there is someone at the other end when you enter social media. But I also know electronic connections are not substitutes for in-person socializing. They can supplement it very well, but at some point, my brain needed to meet the people I was talking to on the other end of the data stream.

Being disabled, to be able to afford travel, I sacrificed having a home to come to when I was not traveling. For the most part of seven years, I lived without a permanent dwelling. This was an experience of its own. I am in the midst of writing a book about a part of that experience, The Car That Ran on Prayers.

Many of the people I met in person during my travels joined me online to watch how my journey continued. When I finally made the decision to come inside and begin the task of documenting it all, many of my friends and family nearly cheered with relief. It had been a long seven years for all of us.

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I reached out of my bed into a world I had no idea where or if I belonged in. Then, as I traveled, I began to reach into the people who reached into me when I was reaching out.

I have visited my friends, sat on their beds while they were curled up in pain. I love them all. I love those who have passed, and those who are still here. I love those who no longer consider themselves my friends. I love those who try harder every day, and I love those who just want a break and take it.

On the occasion of saying farewell to yet another friend, I can only reflect on all of my friends and the wonderful ways in which they have all expanded my world. I look forward to being reunited with them, and you, all when we are done on this side of the veil.

For now, I recommend calling a friend. Someone you know who gets lonely. Don’t worry, they will forgive you for not texting first. Too many of us are lonely in a world of friends.

Rest in Peace, Vin, Maria, Stephanie, Dana, Lisa, Bobby and so many more. I’ll see you on the other side. IMG_20170726_054126

Grandma Duty

One week ago today, my fourth grandchild was born. She is the first child of my last child; the baby girl of my baby girl. Yes, I am a happy grandma and a very proud mama, preview-10.jpgbut why does being a Grandma mean more to me than any other role I have ever held? I would say that most likely has something to do with my Grandma, my namesake, Margaret “Ellen” Savage Rebman.

We learn by example. I learned much from my childhood and my grandparents. Both of my grandmas were named Margaret, but my mother’s mother used our mutual middle name as her first. Everyone called her “Ellen,” but for me and three other very special children, she was “Grandma.”

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“Grandma King” as a child

My father’s mother had experienced a severe car accident in a Mustang convertible that left her in a wheelchair for as long as I can remember. My childhood memories of visiting “Grandma King” as she would be known for the last surname she acquired by marriage, were filled with the strange smells and sights of retirement homes. I wish I would have had a chance to know the woman who I hear from my uncle spent summers vacationing in Canada hunting with my grandfather. But that woman was a distant memory by the time I was old enough to carry on a conversation with my Grandmother.

My mother’s mother was an entirely different story. My childhood memories are full of beachcombing trips and my first time on a salmon charter boat complete with my grandparents and mom.

My Grandma and Grandpa (Ellen and John) lived on the beach in a cove on Hood Canal at the base of Puget Sound in a little place called Union, Washington. It was a slice of heaven. They moved to Olympia to be closer to their great-grandchildren after my second child was born, but my memories of them were on the Canal.

My boys with my grandparents
Grandpa & Grandma and my boys 1987

A CB Radio handle she adopted fit her well, “Beachcomber” fit Grandma as well as “Monkey” fit me. Many of the summer days I spent with my grandma were on the beach in front of their home. Grandpa had built a dock jutting out of the bulkhead between their home and their neighbor’s summer home. It was the perfect place to fish off the end of and catch the ugliest fish you ever saw… but grandma’s cats loved them.

The cats grandma allowed me to feed my catches to were actually strays. As an adult I now realize being so close to the water, the only way to keep rats away was to keep cats around. My grandma was pretty smart that way about a lot of things.

Ten days before I turned forty, my second son and his girlfriend became the proud parents of a baby boy, Aydin. My first grandchild and only grandson to this day. He changed my life by making me a grandma. preview-7.jpg

Very soon after Aydin was born, his mother decided to continue her education. By taking a class here and there, she could continue to be active in school, yet still feel she was fulfilling her duty to her son. I agreed to help out.

The daily traveling to my baby grandson’s home, then taking his mom to school and spending time with him and sometimes my mother who worked on campus was an incredible opportunity to bond with my grandson. This also allowed Aydin’s great-grandma to see him much more than she would have had an opportunity to if we weren’t visiting her at work. A few hours a day, every weekday for a three month period of time, I had “grandma duty.”

1433511313573In 2010, I finally had the opportunity to meet my twin granddaughters, Saphira and Serulea, daughters of my estranged firstborn son and his wife. They were just getting ready to turn two years old. The girls were living with their mother’s mother, Mary, and their little sister B.

Our visits have gotten more frequent over the years. Currently, we live only about a mile apart and we TRY to go to church together each Sunday. It is a crazy new experience for me to live just down the road from these now preteen girls and we are having a lot of fun getting to know one another.PicsArt_05-29-10.47.22.png

As I held my daughter’s daughter last week… this precious new life… I reflected on what being a grandma means to me. What “duty” do I have to these little girls and one lonesome boy?

I am a different woman than I was when Aydin was born. Jaina’s grandma will not be the same woman Aydin’s grandma was. I’m eleven years older than I was back then. But I am younger.

When Aydin was born, I was living out of a bed. My arm always had a fabric band on it to protect him from coming into contact with the deadly narcotic that kept me able to be active at all. When Aydin came into the world, my body was heavily dependant on the pain management of opiates.

1363382360393In 2009, when Aydin was three, I said farewell to opioids. It was “grandma duty” that got me out of bed during severe withdrawals and gave me the impetus to keep on trying. One week ago, I saw my daughter display more strength than I thought possible when from her tiny frame she gave birth naturally to the most perfect little angel I have ever met.

My grandchildren are my heart and soul. They are my mirrors. I anxiously await the journeys we shall experience together. I am just thankful to Heavenly Father I am here to be able to get to know these wonderful little people He has seen fit to share with my family.

 

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

 

A Medical Marijuana Mormon

Although I have talked a bit about the fact that I never wanted to be a “medical marijuana Mormon” or how I didn’t want my Testimony “tainted” green, I have not talked much (except by video) about why I willingly took on the moniker, “Medical Marijuana Mormon” at least in the choice of URL. (You can also reach this site by typing in MedicalMarijuanaMormon.com)wp-1485625896850.jpg

When I made the decision to purchase MedicalMarijuanaMormon.com as well as MaggieSlighte.com last January, I was taking a social media marketing class for writers in my bachelor’s program. I learned many techniques and improved some that I had already been working on developing.

I have been a “medical marijuana Mormon” since the day I was Baptized a Mormon, but it wasn’t until my own trial about the herb when I decided research I had performed might be useful to many other members of The Church of Jesus Christ of Latter-day Saints when making the decisions about using cannabis as a medicine for themselves or a family member.

Two weeks to the day from the date I received my Endowments in the Seattle Washington Temple, I fell profoundly backwards 10 feet from the top of an attic ladder, incurring a compression fracture of my T-11, essentially “breaking my back.” What few people in the church knew about me at that time is that I was a medical marijuana patient. I had been even before I was Baptized.

Before I was even interested in The Church of Jesus Christ of Latter-day Saints, I knew medical cannabis patients who were Mormon. In fact, the seventh legal patient in Washington State was a Mormon and was a dear friend of mine. From him I first heard the words “The Church says it’s an herb, treat it as such,” meaning that smoking it is discouraged, but ultimately the route of administration is between the patient (member), their physician and God.

IMG_20120915_194030Contrary to many beliefs, there are many and varied reasons that a physician may direct a patient to inhale their medication. Although “vaping” or vaporizing is preferred to smoking or combusting cannabis in the administration of the medication, inhalation can be useful when attempting to bypass competing digestive liver enzymes. The simple fact is that when inhaled, the liver is not involved in the absorption and for many reasons this can be helpful. But I digress.  I will be including information about this in the book I am currently working on, Medical Marijuana for Mormons: Cannabis sans combustion. Topicals are a great option for patients needing to avoid the liver-involved administration as well! In fact, topicals are the least-used and most effective forms of cannabis medication!

When I broke my back, my cannabis use came “out of the closet” during an interview between myself, my husband and our Bishop. When the Bishop offered to help find a program to assist with the costs of my prescriptions, he soon realized that wouldn’t be possible. I had been in recovery, off the opioid medications Fentanyl, Percocet and Vicodin which I had been prescribed for over 7 years between 2002-2009, for five years. My physicians all agreed: I couldn’t take opioids even for the back pain. I was recommended a strong preparation of cannabis oil and given muscle relaxers as well.

My Bishop was new to this country and to the cannabis laws. My state had recently legalized “recreational cannabis” and that seemed to confuse things with the Bishops even more. He referred the matter to our Stake President. The Stake President in the Centralia area had been in place for over a decade. His politics were not liberal in the least. He had NO love for cannabis.

My Bishop was directed by the Stake President to take my Temple Recommend.

I was devastated.

As the Bishop took the Recommend from my hand, I saw the tears in my eyes echoed in his own. Neither of us felt The Spirit in the action, but we would both be obedient. He obediently took my Recommend, I obediently gave it.img_20151001_100743

An interjected third person in the equation was my non-Priesthood holding husband of the time. He was offended and he was loud about it. He made a point to tell anyone who would listen that we were forced to kill our plants and shop from the local dispensaries instead of growing our own which was a much more affordable option available to us legally in our state as patients.

It didn’t matter how patient I attempted to be while I healed from my back injury, the scenes that my husband made at church became embarrassing. His actions did NOT echo my feelings. I knew it would be resolved in God’s time. But the husband I was married to then didn’t believe in waiting for God for much of anything.

Late in August, after being without my Temple Recommend for about a month, Stake Conference was held in Centralia, Washington. I invited a good friend of mine who is “fifth-generation LDS,” and was thankful for his perceptions. Elder L. Tom Perry had celebrated his 92nd birthday that week. We didn’t know that would be his last birthday on this side of the veil.

remebering-elder-perry-lvl1_1-07925780
Elder L. Tom Perry from LDS.org

Elder Perry was a giant of a man standing at the podium I peeked in from the door at the side of the chapel. I stayed in the foyer contained within my steel cage of a back brace with the walker that I still depended upon. I was happy with my viewpoint as the Stake appeared to receive a rebuke. He gave us a lesson in who reports to whom in the Priesthood offices. He tested the Priesthood holders in their knowledge of their duties and charges. He taught us all with an abundance of love. Elder Perry taught us about obedience. Then he replaced the Stake President, informing us of Brother Smith’s call to the Stake Presidency. President Smith’s day job was an FBI agent. He worked for the Federal Government.

I can’t remember if it was the next Sunday or the Sunday thereafter when my Bishop called me to his office and joyfully handed me my Temple Recommend back. We had both survived the trial.

I learned a lot during that trial. I received a Priesthood blessing when I fell. That blessing, given by the Elders of the Centralia Ward in late May 2014 on my mother’s front lawn while I lay on a gurney ready to be loaded up into the ambulance that awaited, specified that I needed to follow my physician’s advice and I would be healed. I followed the advice of my doctors and I endured a trial of my faith, and I healed. I learned to walk again and I live to this day with about the same amount of “able-ness” as I had previous to breaking my back.IMG_20120927_205912

I was left with the feeling much of the research I have performed in my own health-information-gathering could be very useful to others. I was also left thinking about the number of children who are finding relief from severe epilepsy and violent forms of autism with cannabis medications. I decided at that point to write a book called Medical Marijuana for Mormons: Cannabis sans combustion, both to educate other Latter-Day Saints about the herbal medication but also to help those who were in the process of a trial or making the decision to move to an area where the herb is legal for medical use.

I have completed the outline and a few of the chapters. Research for the book is ongoing due to the fact that new studies are coming to light daily about the botanical medication.

IMG_20120915_213049Being a “Medical Marijuana Mormon” doesn’t mean my testimony of Jesus Christ, Heavenly Father and the Holy Spirit is any less. My testimony is strong. I know my Heavenly Father knows and loves me and created me exactly the way He wanted me. He is the reason I want to share what I have learned about this herb He created. I know His love is in the compassion that people who are in pain feel from this plant. I know it is a gift from Him. It is my job to do my utmost to educate myself and others through publishing this book.

Thank you for your interest and your time. I will continue to post progress notes on the Facebook page Medical Marijuana for Mormons: Cannabis sans combustion as well as on this site!