Summer Was A Bummer… But Will Fall Have It All?

Hi everyone! I’m crawling out of my hidey-hole to check in. It has been a wicked busy summer here in Florida! 

We began our summer with Hubby’s health issues taking priority. He developed a diabetic foot ulcer on his right big toe. It was deep and ugly, infected and stinky to boot. He’s been completely non-weight bearing on his right foot since July. Our weekly pilgrimages to Sarasota to the wound center are tiring, and I’d be fibbing big time if I said this hasn’t affected me, too. 

My health has been okay on the surface, but I’m suffering with back pain from lugging his wheelchair around from doctor to doctor. The fibromyalgia has been wildly out of control, and my pain specialist hasn’t offered to help beyond recommending the “nerve block” that I should have had last year. But because Hubby is wheelchair bound for most of his day, he could not accompany me to the appointment. Doesn’t that just figure?

In other news, I’ve checked off a HUGE bucket list item this month with the completion of the first draft manuscript for my first romance novel. The creative writing blog I’ve been working on since before my mom’s passing in 2018 has taken off, and with the addition of a truly gifted editor and wordsmith to my blog team, we’ll be working to edit this behemoth of a book. It truly doesn’t have a working title yet, but I’ve been tentatively calling it Generations. With some luck and a lot of hard work, I might look at indie publishers by the beginning of next year. It’s been a very exciting time around here!

I know I’ve written about losing the cat who saved my life, but I’m not sure I’ve introduced you to the little tortie girl who has filled his paws. This is Bella Grace, my semi-permanent hip attachment.

Bella

She loves to play fetch like Pixel used to, and she is as stubborn as they come. But at night, when I’m alone in the living room concentrating on my writing, she’ll come to me and curl up in my arms. She is 110% tortitude, and I love her that way. That is my favorite picture of her, too. 

Besides everything else going on around here, we’ve had a couple of frightening incidents in our home. The first was about a month ago when a short in the electrical box outside our bedroom caused a small fire under the siding. They evacuated our entire building, including our very freaked-out feline charge. The electrical issues now fixed, we’re looking at new windows in our bedroom and living room some time this winter. I can’t wait. 

I should preface this next part by saying we live on the ground floor of a two-floor apartment building. We’ve had exactly three different neighbors upstairs since we’ve been here; two of those have been within the last year. The current neighbors are supposedly two brothers. One works a night shift and is a day sleeper, the other works normal daytime hours. This means, naturally, that there is noise at all hours of the day and night. I have never met either of the brothers, until last night, that is.

We heard a ruckus (doesn’t that make you think of the Breakfast Club?) upstairs; shouting, a loud crash on the floor that sounded like someone falling, and Hubby heard screaming. So I put my shoes on and I intended to go upstairs. I was going to ask them nicely to keep it down. When I opened my door, the commotion was outside; a different neighbor on the steps with a phone, talking to a 911 dispatch. The neighbor who created the noise laid on the deck outside their front door, moaning in obvious pain. A distraught woman cried over him, muttering unintelligible things, but I could make out, “I’ll never forgive myself.” 

I looked around, I’m sure, with a bewildered look, and asked, “What’s going on out here?” I was more than a little annoyed. That was, until the man lying on the deck said, “I’ve been shot in the leg at point-blank range by a .357.” That made the woman cry harder. In the confusion, I heard him say, “She shot me in the leg.” 

I felt sick to my stomach, to be honest. All the “what-ifs” ran through my head at Cat 4 hurricane speed. What if the bullet came through the floor? What if it would have hit one of us? And then later, wondering what type of liability would come from the apartment if someone was killed or shot by accident through a wall or ceiling. 

My opinion on this is probably controversial to some, but I’m going to say it, anyway. I believe in the second amendment, and in the private citizen’s right to own a firearm. But personally, I’ve always been a little squeamish around them. I’ve never owned a gun, and I’ve only seen one up close two or three times. It isn’t the gun I fear; it’s the person with ill intentions behind the trigger, or holding the knife or other weapon, that worries me. 

That said, everything calmed down last night, and after my nerves settled, I felt fine. It’s something I don’t want to repeat. These incidents are getting way too close for my comfort. But rentals are just not available in our area, and affordable ones are even more scarce. We’re stuck in a brand new lease until next year, anyway. Will we move to a different place next year? I’d love to, but it depends on our financial ability to do so. I’m hoping to downsize (much to Hubby’s chagrin) the beginning of next year. Our space issues in this little apartment overwhelm me. 

That’s about all that’s been going on this year. There’s more, but I can’t disclose it. Not yet, anyway. The suspense will just have to keep y’all curious. I know, I’m evil (not really!)

Hopefully, after the book editing gets underway, I can return some attention back here to this poor, neglected blog. If you’d like to see the project I’m working on, you can find it here. I’m getting ready to start my second generation rewrites within the next few days. I’m so excited about it, too!

Stay well, do good. You have my thanks for hanging here, waiting for my next post. I’ll never take you, my readers, for granted. My prayers go with you!

Checking In (Yet Again)

Hello friends. It has been a long time since I have checked in with you, and much has happened in our lives, so I thought I would bring you up to date now that we are officially more than halfway through this year.

First things first. We are still self-isolating and trying our level best to stay COVID-19 free. I have discovered the wonder of grocery delivery from Aldi, and even after the virus fades away, if it ever does, I will probably still use this service. The amount of energy this saves me is immense, and these days, my energy is at a premium. 

Hubby had some blood work done to determine his next best course of action against the monster known to us as Multiple Sclerosis. The good news is that he is JC-VIRUS negative, which makes him an excellent candidate to receive Tysabri infusions for the foreseeable future. This will hopefully buy us some time without disease progression. 

The frustration since March has been trying to get the VA to cover Acthar for him. He was in an MS flare when we saw the doctor in March for the first time, so he was prescribed this medication to stop the inflammation. It is now July and the medication is just now on the way. Most of the symptoms he had that sparked this treatment have now subsided. The VA has to be the most difficult wad of red tape to navigate. I’m tired of doing everyone else’s job. Rant over!

I was tested for myasthenia gravis in late winter, but I never heard back from the neurologist about the results. I am guessing no news is good news? I truly have no idea. He did tell me, however, that my double vision is caused by something called fourth nerve palsy. My left eye doesn’t track with the right eye, and it causes double vision. The treatment is prism lenses in my glasses. And that’s where it stops. Prisms are expensive, y’all. 

Our big news involves our cat family. My fourteen-year-old boy, Pixel, had been sick for months and truthfully I probably clung to him far longer than I should have. But in May, he began to get aggressive with food. He was constantly hungry but he gained no weight despite a huge calorie intake every day. And when he snapped at me, we realized we couldn’t risk him hurting Mercy or either of us. 

Pixel crossed the Rainbow Bridge on May 11, 2020, after a long illness. I got one last Mother’s Day with him. Someday, I will write a post about his life and the extraordinary event that allows me to write this tribute to him right now. 

Mercy, our surviving cat, has missed him greatly. We knew she would, and adjusting to life as a solo cat has not been easy for her. We waited over a month before we began looking for a kitten to love. 

Almost two weeks ago, I heard about a litter of kittens from the same rescue where we adopted Mercy. One of them, a female, was black and white and looked to be a mirror image of our cat, Abby. So we made an appointment to see her, full of hope and very excited. 

When we arrived, we were told there was a mixup, and our female cat was actually a male. When I asked if she had any female kittens, she pointed to a dilute tortoiseshell kitten they had gotten just a day prior. And when I saw her, I knew she was mine. 

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Miss Bella

Bella came home on July 2, 2020. She is rambunctious, sweet, gentle, loves to play but even more, she loves to snuggle. Bella has a voice and she isn’t afraid to say what’s on her mind. She came to us sick with a parasitic infection and conjunctivitis but she has greatly improved taking her medicine every day. She is technically in quarantine until Friday but she is ready to meet Mercy and take ownership of this apartment. She is bonded with me, and it looks like I will have a cat in my lap every night once again. 

So, that is the news on this front. I hope this post finds you all happy and healthy. God bless!

COVID-19 And The Free Market

In many ways, I suppose it’s a good thing I fancy myself a bit of a germaphobe. Long before the appearance of COVID-19 in the States, I began stocking up on alcohol wipes, hand sanitizers, and antiseptic hand wash. If I was even the tiniest bit worried about it and I wasn’t prepared, I’d be rendered housebound in fear from the lack of supplies available in town. 

So where is all this hand sanitizer, alcohol and toilet paper going? A quick look on eBay suggests that people who have scored big-time deals before stores began rationing are making out like bandits. But that is for those who don’t mind throwing down $30 a bottle for Purell. No, that wasn’t a typo.

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Screenshot from eBay Android App

How about rubbing alcohol? Check out this special deal on a bottle of 91% percent isopropyl. 

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Screenshot from eBay Android App

Toilet paper? I have a few amusing deals in this category. Check this out! 

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Screenshot from eBay Android App

Dang, not even Charmin at that low, low price? Cheap, generic sandpaper for $14.95 a roll. Not a pack, a roll. Let that sink in. 

Or this deal, by this enterprising person.

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Screenshot from eBay Android App

 

Yes, you read that correctly. A square of toilet paper. One. A single sheet. And, you don’t get the Sharpie, which adds insult to injury. 

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Screenshot from eBay Android App

At least you get free shipping. But you can take comfort in the fact that three people have purchased one square of TP in the last 24 hours, but only if you were NOT one of those three people.

How about facial tissues? Kleenex, the antiviral kind, the granddaddy of all Kleenex, is available at this fantastic price.

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Screenshot from eBay Android App

What a deal. God bless capitalism. <end sarcasm>

The hysteria over COVID-19 has well surpassed any hurricane prep I have ever seen in my adult life. A friend shared this picture of her local grocery store in the dry ramen aisle. 

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Photo Credit: Rhapsody via Discord at H-E-B Supermarket

Here’s one from the meat counter!  This is impressive. 

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Photo Credit: Rhapsody via Discord and ABC 13 Houston at H-E-B Supermarket

And the bread aisle.

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Photo Credit: Rhapsody via Discord and ABC 13 Houston at H-E-B Supermarket

Not even during Hurricane Irma prep have I seen this kind of hoarding and hysteria. If you are honestly afraid that coronavirus will kill you, why do you need food? Leave some for those of us who simply need to stock our pantries with everyday necessities, please. 

Even Chewy delayed the delivery of our autoship this month because of COVID-19. As far as I am aware, the feline species is not affected by COVID-19. Now, I understand it affects pet owners and that is why delays occur. But Chewy is not a brick and mortar store. They do literally all of their business by mail, so logically it makes zero sense to me why anyone needs to order additional supplies… by mail… for their pets because they might be stuck in a self-quarantine. 

Now, I realize COVID-19 has the potential to be serious and has already killed thousands worldwide. If you live in the United States, please know you are in the absolute best place to be during this pandemic. We have state of the art health care, top insurers have already agreed to waive copays related to COVID-19 and Medicare Advantage plans have made necessary adjustments to their plans to ensure the most vulnerable are cared for. Everyone just needs to step back, take a deep breath and calm down.

All jesting and sarcasm aside, I hope everyone reading this has taken the appropriate precautions for their family. Do practice basic hygiene and disease prevention you already do during cold and flu season. Wash your hands for at least 20 seconds and do so often. And I hope everyone stays healthy and well through the outbreak. And remember, God is in control. He holds each of us in the palm of His hand.

I wish you all well.

Multiple Sclerosis Sucks And Blows (At The Same Time)

I realize it has been more than a month (closer to two, actually) since I checked in last with my 100th post on this blog. Since then we have gotten through the holiday season, the kick off of a whole new year, the first full month of 2020 and now the first Super Bowl win for the Kansas City Chiefs in fifty years (Congratulations, by the way!) Though things are going relatively okay with me, and I say this reservedly, other stuff has been happening with my Hubby. If you follow this blog or have read any number of my columns about chronic illness, you will most likely already realize this we deal with not only my Fibromyalgia but Hubby’s Multiple Sclerosis.

For those who aren’t so inclined as to read back through months of tapering, Fibromyalgia or other whiny posts I’ll include a little background on this here. And if this post draws you to this blog for the first time, I will take a moment to welcome you now. I hope you can draw some inspiration and encouragement from the words I have written within. Anyway, back to my synopsis on Hubby. Back in 2015, an irregular MRI was the first clue that Multiple Sclerosis was about to invade our lives and wreak havoc on us. Fast forward to now, a four year old diagnosis of Primary Progressive MS had been relatively stable from a clinical standpoint until his most recent MRI.

The images we received from the imaging center were not clear so the neurologist couldn’t tell with 100% certainty, but together with new symptoms he has experienced over the past few months, it seems likely there is a new MS lesion near the brain stem. This is significant because it is the first lesion found actually in his brain. This of course means that the MS is on the move, it’s progressing though we can’t be sure how quickly, but it also means that we are running out of time to attack this aggressively. Treatments we had resisted up to this point are now on the table, and some things are off because they simply would not be effective any longer. That window has closed.

So, what’s next? A dedicated MS specialist in the private sector who will take over his care and hopefully administer an infusion of Ocrevus. The appointment with the new doctor is coming sooner than we expected, but this is a good thing considering the VA’s tendency to drag its heels on almost everything through the Mission Act. The quicker we can begin the infusion treatments, the quicker we can tell if they are helping. With my own new and worsening symptoms, seeing a neurologist closer to home without the nerve-wracking drive to Tampa a few times a year is helpful.

As far as I am concerned, nothing has changed for me since December. I am still awaiting word on the test for Myasthenia Gravis. As of today, this has not been done, and I’m not even sure it’s been ordered. But I see my own primary care doctor in a week, so this is on the shortlist of things to discuss when it’s my turn to see him. The herniated disk in my back still causes severe pain and seems to be in no hurry to heal, as if it would at this point anyway. The last time I saw my pain specialist, I was informed that I was wise to undergo my voluntary opioid taper two years ago, for if I hadn’t done so, I would have been forced. The dose of morphine sulfate I took two short years ago, the one that sufficiently controlled my pain, is now illegal. Maybe he shouldn’t have told me this, but he did, and it infuriates me to no end. How dare they?

Once we see the new neurologist for Hubby in two weeks, I will check back in with an update, when the doctor thinks an Ocrevus infusion is likely, and what his impressions are. Until then, if you are the praying type, we would appreciate and welcome any and all prayers said on his behalf. This was not the news we had hoped for, but in many ways, I think I expected it. But we are both pretty frightened of the future and what it holds from this point forward. Life will be different. How different depends upon what this new doctor determines.

Thank you for reading.


If you know of someone who could benefit from the content in this blog, please feel free to share it. Please keep in mind that I am not a medical professional and as such, I cannot give medical advice. I can only share my personal experiences with chronic illness. Please do not misconstrue my experience for advice.

What I can offer is an ear, a word of encouragement and a smile, which I offer in abundance.

Featured image credit: Pixabay

Happy 100th Post, And A Quick Update On Me!

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Image by MatissDzelve from Pixabay

Hello friends! I hope this holiday season finds you all well, happy, and loved. This is a big day because this post is my 100th on this blog! It only took me four years. I have a few things that have been going on with Hubby and me that I’d like to share.

First, I’ll cover Hubby. He’s been dealing with the MS with just a few hiccups in the road. He has had what he describes as ‘jumpy vision,’ which was diagnosed over the summer as nystagmus. The severity of it depends on the day and how tired or fatigued he is. He wears an eye patch when it’s very bad, which luckily isn’t often these days. Prism lenses in his reading glasses are helpful for him. 

I’m a more complex case these days. I have been having some neurological symptoms myself that, if experienced by themselves would be no worry. But double vision, muscle spasms, facial tics, and a brief stint of choking on almost any liquid I drank… all these things together spelled trouble. So on Thursday, I saw a neurologist for the first time in my life. The good news is that he doesn’t believe the symptoms are related to MS. Hallelujah! 

The not-so-great part of the visit comes in two acts, so to speak. First, he believes he has found the cause for the double vision. It is called fourth nerve palsy, which basically means muscles in my left eye are weak or paralyzed. He was able to detect a tracking issue, meaning my left and right eyes don’t move together as they should. This causes the double vision. The diagnosis is somewhat good, and treatment is possible if only I can afford the fix. Prism lenses in my own glasses can potentially help. The problem is the cost. My best guess and estimates go anywhere from $900 to $1500 for a pair of prism lenses. Yes, I had to pick my bottom jaw off the floor, too. This reaction is totally normal, I’m told.

The second act? I will be tested for Myasthenia Gravis, an autoimmune disorder that affects muscles in the face, hands, legs, arms. So I’m not totally out of the autoimmune woods yet, but I don’t really anticipate this will come back positive. Other than the double vision, I have no other symptoms of this specifically. If the blood tests come back positive for the antibodies, however, that opens up a whole new can of worms. Tests, possible surgery, and medications that I don’t want. The good news is, if the tests show a tumor on the thymus gland, having it removed is curative for MG. Double-edged sword on that one, though, seeing as I’ve never had surgery in my fifty years. I guess I have to start somewhere. 

So what does it all mean? Right now, nothing. To borrow my mom’s cardiologist’s description, we’re marching in place. Testing will be ordered, but until then, there’s nothing to worry about. It’s incredibly difficult for me to give that away. I’m a worry wart by nature. I know whatever happens, God always has my back. Sometimes I’d do a lot better to remember that.

Sorry this is quick, but I thought I’d give an update on the goings-on down here in sunny west-central Florida. If I don’t get back here before the holiday approaches, I wish you all a very Merry Christmas and a happy, healthy and prosperous new year. 

Much love and gentle hugs!


I Am Not The Problem!

On Tuesday, a twenty-three-year-old Sarasota, Florida man (and I use that term loosely) gave his nine-month pregnant girlfriend, also twenty-three, a fatal dose of Fentanyl. He now faces two counts of manslaughter. His cry, while his pregnant girlfriend lay unconscious on the floor, was “I went too far.” The local newspaper reported that this young man had no legal access to pain medication and that his girlfriend ‘nagged’ him about her pain from the pregnancy. His first instinct, unbelievably, was to seek illegal, extremely powerful drugs. He allegedly purchased one pill which he split in half. He took one half and gave the rest to her. 

It’s astounding to me that this young man’s first thought was illegal drugs. Not going to the nearest Walgreens or CVS to pick up acetaminophen or ibuprofen, something, ANYTHING but illegal drugs. Something safer for her and the baby. And herein lies the problem with the so-called ‘opioid crisis.’ It’s a mindset. It’s a behavior. This young man is the problem.

Yesterday, I sat in the office of my interventional pain specialist waiting to see my doctor. It was one of the urine drug screenings that is required by law to get the pain medication upon which I rely to keep my pain to a low roar. An easel held a welcome sign for a new doctor in the practice. Under his picture and the list of his rather impressive credentials, a sentence was printed: “Stop opioid dependence before it becomes an addiction.” 

Really? Really?

The sweet lady sitting to my left overheard me talking to Hubby, and she nudged me when she heard me say, “I suppose this is next.” We talked extensively about the injustice that chronic pain patients have been facing since the government has declared war on opioids, and on us by extension. Her story isn’t unlike others I have heard, either from friends or just reading various articles online. And that this is happening to the innocent among us is infuriating. We are NOT the problem.

When I got the inspiration for this column a quick Internet search turned up article after article about overdose deaths from fentanyl in one form or another. Another quick search for ‘hydrocodone overdose deaths’ only turned up information on what dose of it is lethal. The hard truth is that the majority of opioid overdose deaths are from illicit drugs, most of the time laced or cut with fentanyl. 

In 2017, seventy-eight percent of the states had an increase in overdose deaths, and of those states, fifty-nine percent were considered ‘statistically significant’ increases. The CDC released its revised guidelines for opioid prescribing in 2016 so that being the case, why is the rate of overdose increasing? In the meantime, an incredible 18 million Americans who suffer from chronic pain illnesses are undertreated or have been totally denied medically necessary prescription pain medications. Could it be that criminals and addicts never obey the law? When will lawmakers realize or recognize that they cannot legislate morality? We are not the problem!

Where the number of prescription medications that cause overdoses gets confused is in the numbers of people who obtain those prescriptions illegally, either by stealing from, buying from or just being given the drugs by a friend or family member. This pie chart, from SAMHSA (pg22), illustrates the breakdown of where illegal prescriptions are obtained. These people are the problem.

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The majority of people who rely on opioid pain medications do not abuse them, but we are the ones being abused, treated like addicts, junkies, and fakers when we simply seek help. We have been tapered drastically or discontinued suddenly. The ones who fall through the cracks end up being statistics, the ones who can no longer handle the pain and choose death over suffering. This is the national disgrace. This is the American embarrassment. We are not the problem.

Those who have followed this blog for any length of time remember my voluntary opioid taper last year. My doctor told me it was a wise decision to undertake it on my own because the dose of morphine sulfate I was on 24 months ago is now illegal. One of the reasons I decided to blog my experience with the taper was for the benefit of those who, for whatever reason, needed to taper. There was precious little information about opioid tapering from a chronic pain standpoint, what to expect with withdrawals and pain increase. I believe that if my experience helps just one person enduring this injustice at the hands of unethical laws, doctors, and pharmacies, it will be worth it. 

So I have two months’ worth of pain relief thanks to my co-pay and a practice full of doctors who believe in helping people in pain and are willing to put in the extra hours and absorb the risk. I have jumped through another bunch of government hoops to live somewhat comfortably until February when the anxiety sets in once again. I’m never sure when the day will come that he looks me in the eye and says, “My hands are tied. I’m sorry.” 

I just want to live my life and be left alone. I am not the problem. 


If you know someone who could use the information on this blog, please share it. I do not benefit financially from web traffic to it. I simply want to help those who need the information. 

I am not a medical professional, and as such, I cannot give medical advice. What I can do, however, is offer support, a shoulder to cry on, and a word of encouragement, from someone who has been there. Much love and peace to you.

A Bittersweet Anniversary

It doesn’t seem possible, or logical at all, that it was twenty years ago yesterday this event changed every aspect of my life.

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I couldn’t have foreseen it, or I would have gone a different route through downtown Salem that morning. I had no idea how wide and how long the impact would be felt outside of that split second where she collided with my little car. And though the damage done to the car wasn’t severe, the lasting damage to my body will last the rest of my life.

Twenty years ago began the next five years of frustration. Anxiety. Feeling as though maybe I was more than a little crazy as doctor after doctor told me the pain was in my head. That I was looking for a free ride and a big payday. That I would become a “self-fulfilling prophecy” if I let myself believe I was in pain. Luckily, this was long before the current hostility toward chronic illness and pain began by way of the opioid “crisis,” or I would have been labeled a drug-seeker, an addict, and a junkie in addition to every other humiliation piled on top of the crap sandwich. Friends walked away, not understanding. I hate to think they didn’t care, but I can’t be sure anymore.

It was years before I could drive down a street and not flinch when someone approached an intersection from my right side. Even today, I can still see the event vividly in my mind’s eye, and it’s bothersome. I have dreams about not only this incident, but about accidents that have never happened. And as recently as three years ago, also in October, we were rear-ended in a brand new car at 6 in the morning. I’m already unsure of myself in the dark, but now I have an irrational fear of driving when I can’t see what’s coming for me.

It wasn’t until Hubby and I moved here to Florida that a compassionate doctor believed that I was telling the truth, that I was still in pain from an automobile accident five years earlier. She diagnosed me on the spot with Fibromyalgia after I presented with all eighteen tender points and textbook symptoms. Finally! Validation that I am (or wasn’t) a complete nutjob. It was the beginning of another long journey.

In 2007, the company for whom I worked suffered a tremendous financial loss and was acquired by another. A co-worker and I were laid off as a result. She and I were in the same department and had similar health issues. Coincidentally, of everyone who worked in the branch office, she and I were the only ones not offered a position in the new company. I won’t give much detail about the last two months of my employment there, other than to say many labor laws were broken. But if I wanted my severance package, I waived my right to bring a grievance against the company. At the time, we needed the severance pay, so I chose it. Looking back with clear 20/20 vision, I know I made a mistake. Live and learn.

I planned to take 4 weeks off and resume job hunting. I had two months’ worth of severance to cover us, and I figured with my qualifications and skill set, I’d find another position easily. But in those four weeks, my body betrayed me in a way it hadn’t before. The fatigue was crushing, the pain debilitating. I couldn’t stand long enough to cook a meal, and upkeep on the house was nearly impossible. And as the end of my unemployment benefits neared, it was painfully clear I would not be able to return to work. My doctor agreed. So later that year, I filed for SSDI. The process from start to finish took almost two full years.

Today, I have been unable to work and 100% disabled for almost twelve years. There are days when I’d give anything to have my old life, the old me back. And then I think of every person who has entered my life because of this stupid disease. I remember how much more I have been blessed because they are in my life. To my fellow Fibro warriors, and you all know who you are, my profound thanks to each of you. I love all of you, and couldn’t imagine my life without you in it.

Other than myself, the one person who has lost and suffered as much, maybe a little more at times, as I have is my faithful, steadfast life partner and soulmate, my dear Hubby. There have been many, many times he could have washed his hands of the mess that Fibromyalgia has wrought on my life, on our lives, but he stayed. For that, I can never say thank you enough. You are my rock, babe, and I will love you until I die.

It’s a bittersweet anniversary. 

My Apologies

I know it has been a LONG time since I’ve sat with y’all and discussed things. I’ve had other projects demanding my time lately, and most of my attention has been diverted there. Regrettably, I’ve let this slide for awhile.

This isn’t to say I haven’t been thinking about this. I’ve started no less than five different posts and scrapped each one of them. This one might see the virtual trash heap if I can’t get my thoughts together soon.

Since turning 50 in April, I feel like I’m falling apart. I’ve been dealing with double vision, which requires a visit to a neuro-ophthalmologist (and I will NEVER learn how to spell ophthalmologist without a spell checker!) The issue with this is, there aren’t many in this particular specialty in my area, and none seem to take my insurance. Herein lies the problem. So this is at a stand still as of late.

Since Saturday, I’ve been dealing with a persistent muscle spasm in my right shoulder, which makes everything hurt. I’m in my 20th year with Fibromyalgia, and I swear, I have never hurt this badly in my whole life. You don’t realize how much you use a muscle until you discover it hurts. And every little thing makes it hurt, and throb.

So, I know this is short, but so is my attention span for anything that requires thought or coherence. I just wanted to check in, let you know I’m still out here kickin’.

Things Doctors Don’t Tell You About… Narcotics

I feel like I’m in a whimsical mood these days, with the semi (?) successful launch of my Facebook page for my creative writing blog, and filling up my WordPress account with stories about little people who exist in my PC. What does this have to do with the title of this post, you might ask yourself. And I will tell you. Nothing. Nada. Bupkis. Zero. Zilch. Now that we have that out of the way, we will get into this post, shall we?

I love this post!

Not that post (See? I told you I was in a mood!)

Anywho, I saw my primary care doctor a couple of weeks back, and we were talking about my abysmal failure that I now call my medication taper. He was not all that surprised to hear about it, nor was he terribly disappointed in the outcome. I got to thinking about some of the things I wish I had known about the pain meds. BEFORE I got started with them, because the good Lord knows, if I only knew then what I know now, I would not be in this situation right now. Can I get a witness, y’all?

Maybe, if I can talk myself into researching stuff, because term papers in high school and college were my favorite things in the world (yeah, no.) I can turn this into a series of things that you will never hear from a doctor. Well, almost never.

  • Narcotics Cause Constipation

You have a new prescription for narcotic painkillers, you suspect you might be on them long time. The doctor casually mentions you might experience some constipation. Okay, you think, I can handle this. And for most cases, you’d probably be okay. Hydrocodone and oxycodone, or Lortab and Percocet, have a mild to moderate risk of developing OIC, or opioid-induced constipation. There is an acronym for everything these days, it seems. Some medications are even developed for use with heavy opioid use (Movantik comes to mind right off the top,) Chances are, unless you are taking more than 30 mg of oxycodone or hydrocodone daily, you won’t see the kind of stuff I’m talking about here. I’m talking big league (or bigly) poop problems. I’m talking, I need Roto-Rooter once a week to come clean your personal plumbing, if you catch my drift.

Before I started morphine sulfate, I already knew about the risk of constipation. But with Fibromyalgia, one of our lovely symptoms is IBS-D (see what I mean about acronyms?), or irritable bowel syndrome, with diarrhea. Even with oxycodone, I still suffered terribly with IBS, so I wasn’t too worried about switching to morphine at the time.

I was wrong to not worry.

I will spare you my gory details, but let’s just say I should have purchased stock in whatever company makes Miralax. Without it, I literally do not “go.” At all. And even if I had been able to get off the medication as I had hoped, chances are, my body has long forgotten how to poop on its own. No need to suffer in pain if cutting meds won’t solve one of the worst problems that goes with stronger painkillers.

  • Narcotics Cause Dependence

Given the state of the current environment surrounding the opioid “crisis,” this would seem to be a given. However, addiction is NOT necessarily the same as dependence in narcotic use. Addiction, if I were to go grab Merriam Webster’s definition, is defined as, “a compulsive need for and use of a habit-forming substance (such as heroin, nicotine, or alcohol) characterized by tolerance and by well-defined physiological symptoms upon withdrawal.” (Emphasis mine) Dependence, on the other hand (Well, the term I found is ‘habituation’) is defined as such: “tolerance to the effects of a drug acquired through continued use.”  Addiction and Dependence often go hand in hand, but they can be mutually exclusive phenomena. For example, addiction to opioids will almost always include a physical dependence on them,  but someone who is physically dependent on their pain medications, especially when they are taken as directed, does not necessarily have a compulsive addiction to them. Physical dependence can happen with the chronic use of many drugs—including many prescription drugs, even if taken as instructed. Thus, physical dependence in and of itself does not constitute addiction.snark_warning

I have been fighting against the stereotype of pain patients being labeled as addicts since the legislation was passed last year in Florida. The label isn’t fair, and it isn’t accurate, as the number of overdose deaths for prescription opioids is dwarfed by the number of overdose deaths by other opioids and benzodiazepines. In 2017, the total number of opioid overdose deaths numbered at 86,456, and prescription opioids contributed 17,029 to that impressive, but sickening number. Okay, a little over 19%. Seems like a pretty big number, and it is. But if you take the number of other opioid deaths, heroin, fentanyl, even cocaine and the benzodiazepines, they total a whopping 80% of those deaths combined. But tell me again how chronic pain patients are the problem here.  Okay, time to dial it back, I’m sensing my snark ‘o meter is buzzing.

Dependence isn’t the same, folks. It just isn’t. Addiction = psychological  ≠ Dependence = physiological. That is my summary of the whole debate.  You’re welcome. Anyway, because of the physiological nature of opioid dependence, it is very difficult to discontinue these drugs without some type of intervention, either medicinal or behavioral, sometimes both. It is this dependence that causes withdrawal symptoms. The same happens with caffeine, nicotine, alcohol and other substances we humans find ourselves dependent upon or addicted to. Had I known when I began taking these medications twelve plus years ago, that I would probably be on them for the rest of my life, I would have turned them down.

So, this is what happens when you combine insomnia, regret and a weird mood.

You’re welcome.