My Thanksgiving

This may seem off topic, and I suppose it is in the direct sense, but I think it's important as a spoonie to take time out now and again to remember the things I'm thankful for, especially on my worst days. Thanksgiving is the time of year, whenever and wherever it's celebrated, that people typically take time out of their day to share what it is they're thankful for. While this isn't a tradition at dinner in my house (owing mainly to two brothers who can't take such things seriously) I've decided to do a blog post instead. 

I'm thankful for my family, first and foremost, who supports and stands by me come what may. We may not always get along with each other, but when the chips are down, we always have each other's backs - and fronts - and we stick together through thick and thin. Words can't describe how much their support has gotten me through, and undoubtedly how much more it will continue to do so. 

My friends, of course, come next. There aren't many that I have in the offline world and those that I do I very rarely see. But those online are as good as gold, and I wouldn't trade a single one of them for a mint of money, because they too have gotten me through so much; many without even knowing it. Posts that make me laugh when all I want to do is cry, posts that inspire when I want to give up, even just a well-timed hello when I'm feeling alone, all of that and more has pulled me through some serious darkness and back into the light again. Thank you. Really and truly, from the bottom of my heart. (Also, thank you for putting up with my random bitch-fests about various aches, pains, and injuries on Twitter LOL.)

The family pets get their own segment - they are, of course, considered family by all of us, but I wanted to give them a specific little paragraph here. We have Pepper (whose name is short for Black Pepper [yeah, I know. We didn't name him.]) who is a Chiweenie - a half-chihuahua, half-dachshund, Turk, the brown and white gerbil, and his brother JD, the silver and white gerbil. Each one of these furred angels has brought special joy and love into my life. 

Pepper has been with us for I believe six years now, come Cinco de Mayo. He is our second dog, his predecessor, also a chiweenie named Bandit, had passed about a year before. His intelligence and unceasing attempts to talk put us in stitches, especially when he manages to actually audibly pronounce words well enough to be understood (not even joking; he's said mama, love you, night night, yes, no, time for school  [what we say when it's time for his training] and several other things - typically in cadenced growls of varying pitches and tones, but the way he uses his tongue and snout to alter the sounds makes him clearly understandable.). The way he understands what we're saying well enough to cut us looks or react in other fashions is usually good for a laugh too. But there's also how he reacts to knowing we're in pain or not feeling well, by lying with us and trying to lick at where we're sore, or snuggling against us and not wanting to budge when we're sick.  That's not to say he doesn't get into his fair share of mischief, especially as he has an apparent fetish for tissues both used and new, but overall he's a well behaved pup full of love and laughs, and he's been a blessing in this house. 

Turk and JD are in a class of their own - as gerbils they're a fair bit different than a dog, as you'd expect. But they're more intelligent than one would think, and watching their antics, whether it's Turk's constant architectural redesign or JD's incessant desire to be running on the wheel (when he isn't eating) and occasionally getting going so fast he does a full revolution on the wheel and flings himself out, they each have their own distinct personalities. They're quite loving creatures in their own way - not only with each other in how they snuggle and groom one another - but with the people in the house as well. They're always happy to see us, often hopping happily up onto their hind legs when they hear a familiar voice and running to stand atop the cabin where we always pet them from, and eager to give us gentle little nibbles on our fingers and snuggling into our hands - though JD still has to learn his own strength with his nibbles from time to time. Their curiosity and eagerness to interact and explore the world and everything in it is fascinating to watch and more often than not amusing, and the trust they put in me when they let me hold them and run along my hands and arms, trusting me not to let them fall, is, quite honestly, breathtaking. 

Next on the list comes my doctors. Without them I don't know where I'd be other than in even more pain than I can imagine and certainly much less mobile than I am now. Their persistence in not only finding treatments that work but testing to diagnose and find out what may or may not be wrong, their perseverance when results are negative and treatments don't work, is incredible. They never give up on me or my broken body. They never stop trying. They never stop working on thinking of new things or alternative therapies or medications that might work as an off-label use. Every now and again, they get a winner, and their genuine joy and satisfaction when I report something actially alleviating symptoms is heartwarming. It renews my faith that they genuinely want me to get better just as much as I do. Even if we all know I may not ever get fully better, we work towards getting me as better as I can be, and I'm reassured in and eternally grateful for the fact I know I'm not alone in that fight. 

Last but most certainly not least, I'm thankful for everything that I have that I know I'm so fortunate to have. A warm home. Food. Clothes. A comfortable bed. Clean drinking water. Books to read and the education to know how to read them. Everything. There are millions on this planet that have so much less than I do. Who are lucky to have even one thing I've listed in this paragraph. I haven't forgotten them this thanksgiving. I don't forget them any day of the year. They are constantly in my thoughts, as cliche as that is to say. I wish I could do more to help beyond what meager donations to charitable organizations I can give. 

After Thanksgiving dinner, many will leave the table to go shopping, some in rather violent altercations, for Black Friday deals. I always found this hypocritical. But I'm not here to chastise or guilt trip those of you that do this, because I know that for some of you, these sales are the only way you can afford to shop for the holidays. 

But I would like to make one request of those of you reading: Shop for them, too, if you can. Toys for Tots and other charitable drives help the less fortunate every year. If you can even manage to donate one thing, you're bringing a child a smile. 

Thank you for reading, I hope you and your families have a very happy Thanksgiving, and blessed, happy holidays thereafter - whatever it is you celebrate.

Jade

The Truth About The Opioid Crisis

With the influx of articles and blog posts about the Opioid Crisis, some may say that I'm bandwagoning here by writing this post, but honestly, I've been planning to write it for some time. My next-to-last blog post touched on the subject, dipping my toes in the water, if you will. This one is going to be a bit more in depth, and much more personal. I'm not going to throw out a bunch of tables and graphs, but I will give some statistics. And I will give the truth. The government and propaganda would have you believe that anyone on prescription opioid medication is abusing them. The statistics do not support that.

What statistics? (Note: rather than using two numbers [e.g. between x and y percent] I will go with a median number to simplify the statistic unless it's a margin of 5 or more) That only about 21 to 29 percent of patients prescribed opioid medications misuse them. Only 10% develop an abuse problem. Only 5% transition to heroin.

While it's true 80% of heroin users first abused prescription opioids, only 5% of that 80% had them prescribed to them in the first place. 

The truth is, this opioid epidemic is a heroin and illicitly manufactured fentanyl epidemic. The overwhelming majority of patients who are prescribed prescription opioid do not abuse them nor become addicted to them. Yet we are being punished for the minority that does. We are being punished for people abusing street drugs because we responsibly use prescription medication that happens to be in the same drug class.

And now the death toll is rising. But here's the thing, dear reader. The rising death toll I'm referring to isn't overdoses. It's suicides. Yes, you read that right. A steadily growing number of chronic pain patients are committing suicide because they are being cut off of the one thing that makes their lives bearable with little to no hope of reaching that point again. They're committing suicide because they HAVE no hope, because they're seen as drug addicts, as junkies looking for a fix, not as people in unbearable amounts of pain who are crying out for help and being told they just need to suck it up and stop looking for drugs. They're committing suicide, dear reader, because the fear of death is far outweighed by the agony of life they're experiencing without proper pain management. The pain management many of you who don't live with chronic pain are cheering to be taken away. 

You're killing us. We are sick. We are in levels of pain that you could not even imagine and frankly, I don't WANT you to be able to imagine. And that pain never stops, it never goes away. It's there with every breath we take, even in our sleep, it's there. 

I have dreams where my pain permeates them. I get torn apart by animals or my bones broken by falling rocks and wake up with a start... Only to realize the pain of the dream is still there. Because it's real, and often I can't move for several minutes because of the level of pain I'm in. It's all I can do to force myself to breathe because even that is agonizing. But after a while, sometimes as little as five minutes and sometimes as long as an hour, I can move a little. And then a little more. Bit by bit I coax my spasmed muscles and throbbing, swollen joints into movement and manage to roll over to reach my bedside table where I can finally take a pain pill and a muscle relaxer. Fifteen minutes later, I can finally take a full breath without feeling like knives are scoring down my back and across my ribs. I slowly work the stiffness out of my joints and muscles, and another hour or so later, I can finally get out of bed and with the support of a cuff crutch, make a slow journey the 15 feet to the restroom and back before I have to rest again as that short trip has exhausted me from the pain, and I know that the rest of my day is going to be primarily spent in bed trying to fight off pain with heat, various topical analgesics, and medications. Rare are the days I'm well enough to go out and enjoy myself. They happen, and I make the most of them. But they're rare. Because pain management has such a tight leash on it that my regimen is completely inadequate.

I'm not telling you this to earn your pity. I don't want it. I'm not being hyperbolic either. None of this is an exaggeration. God knows I wish it was. 

I'm telling you this so hopefully you can understand, just a little bit, what living with severe chronic pain is like. Why people like me need opioid medications to get by, to try to have a relatively normal life. The restrictions in place make properly treating us difficult if not impossible, and it's only getting worse.

Please, help us. We're using our own voices to speak out, but without the help of people like you, reader, people who don't suffer but who have compassion and empathy, who understand that chronic pain patients are not drug addicts, our voices may not be enough. We need your help in this fight. We are fighting for our lives. Literally. Some of us have already lost that fight. 

Help the rest of us win.

So Tired of Being Tired

Truthfully, I don't usually post many blog posts from my phone, much less spontaneously with the sole intent of complaining about a fact of Spoonie life rather than with a purpose of conveying a point. This is one of those exceptions, because, really, I need to vent a little.

I've been caught in a Fibro flare for several weeks now. I can't say it's unexpected; the change of the seasons tend to bring them on, and when you add on the fact I got normal-person sick on top of it, it was a perfect Spoonie storm. I could honestly live with the pain; pain is a constant background noise in my life that regularly shoves itself into the foreground, demanding my attention like a toddler throwing a tantrum until I attend to it and it reduces back to that background noise state. It's never totally  -gone,- it's just varying levels of presence.

The exhaustion, on the other hand... that's what makes this suck. People hear the term chronic fatigue and assume you're just tired all the time and need to sleep more. I wish it were just that. The fatigue is completely crippling. I can count probably on no more than both hands how many times in the past few weeks I've had the ability to get out of bed to do more than use the restroom or make a quick-and-easy snack or small meal. Some days even holding my phone is exhausting. Chronic fatigue syndrome also causes aches, itself, in the joints and muscles, it causes sore throats and headaches, even fevers. For all intents and purposes, it's a bit like having the worst flu you've had in your life.... but it doesn't go away.

I spend so much time sleeping, but I wake up as exhausted or even more exhausted than before I went to sleep. Then there are the days I'm dealing with either insomnia or painsomnia, so the sleep that at least seems to keep me going is denied, and the fatigue is bolstered by pure mental, emotional and physical exhaustion the likes of which makes my muscles tremble and my stomach churn with nausea, and my mind blank with white noise because thinking is too difficult and too demanding of my ever-dwindling store of energy.

When I'm on Twitter and I don't interact much beyond likes and retweets, it isn't personal. It's because it's too exhausting to type; to do more than scroll and tap either like or retweet and carry on. That's my way of reaching out beyond my fatigue into the social sphere with what little I can offer.

I'm only 30. I shouldn't feel this way. But I do. And there are many people older and younger who share this situation with me. We are the invisible people to the outside world; we rarely go out because of how drained we are. We miss out on life itself because we're putting our energy simply into existing, into surviving, into trying to make it through one day at a time.

Life slowly passes us by... and we can't do anything about it but watch it as it goes.

I'm tired of being tired. I know you are, too. We are all tired together, being drained by that invisible energetic vampire trying to suck our lives away. Knowing we aren't alone in this... It helps some. Knowing there are others feeling what we feel - physically, mentally, emotionally... it reduces the sense of isolation this brings on. But nothing will eliminate it completely. Nothing but a cure.

Few scientists seem interested in that. We usually aren't in a popular category - our illnesses typically won't kill us. They aren't contagious. So why should they bother trying to cure illnesses like chronic fatigue, fibromyalgia, ehlers-danlos, etc.? It's not like we're going to drop dead. We'll just exist in a Half-Life of pain and fatigue as the world passes us by. Best not to bother about us, right?

I know. That was bitter. And I'm ignoring the progress that -has- been made in fibromyalgia and cfs research. But damn it, I've been dealing with this for most of my life - coming up 21 years! And it isn't getting any better. Not for me, not for any of us I think. Progress may be progress and Rome wasn't built in a day.... but it seems, from my viewpoint, that people aren't aware - or don't care - about the invisible illnesses that take their toll on the millions that suffer with them.

That needs to change. Desperately.

We want our lives back.

I want a life for the first time!

And it isn't just up to those of us that are ill to fix it. We can't do it on our own. We need you, too. We need help, we need awareness, compassion, and empathy.

We need a cure.

My Doctor Is Not My Drug Dealer!

More than once in the very recent past, I've encountered people - one of which claiming to be a doctor, himself - who accused me of "conning my doctor into being my drug dealer" because I am prescribed an opiate medication. I know for a fact I'm not the only person who's had to deal with idiocy like this, and for my fellow Chronic Illness Warriors out there, I feel your pain; figuratively and literally.

For the rest of you, let me drop a bit of a truth bomb on you first and foremost about my conditions and the medications I'm on, and then I'll delve into some truth about the "opioid epidemic."

Those of you who regularly follow my blog will be reading information you're already, at least in part, aware of. Bear with me.

I first became chronically ill when I received a whiplash injury at ten years old. Spinal cord injuries are not uncommon in triggering the onset of dormant fibromyalgia. I had always been very active as a child, but as the pain levels in my body increased, my activity level decreased. Doctors then had no idea what to make of it. Fibromyalgia was still seen as a trash bin diagnosis, and it wasn't yet as common knowledge then as it is now that children can suffer from it as well as adults. It began the stage of my life I call the merry go round of doctors. I had more and more tests done, everything from xrays, mris and ct scans to full blood panels. One doctor would say I had arthritis and another would say I didn't. The only consistent finding, it seemed, was my elevated ANA. For the uninformed, the ANA test tracks inflammatory - and typically autoimmune - processes in the body. Thus began another round of tests for Lupus and other autoimmune conditions.

Years down the road, I am now approaching my 31st birthday, and my diagnoses are as follows, assuming I leave nothing out (it's a lot to keep track of): Fibromyalgia, Chronic Fatigue Syndrome, Autoimmune Thyroiditis (Hashimoto's, hypothyroid), Hypermobole-type Ehlers-Danlos Syndrome, Type 1 Chiari Malformation, Tenovitis, Synovitis, Tenosynovitis(yes, those are actually three separate things), total loss of lordosis (normal curve) in the cervical spine, Degenerative Disc Disease in the thoracic spine, arthritis in my neck, knees, and likely back, hips and shoulders, scoliosis, chronic migraines, chronic severe muscle spasms, irritable bowel syndrome, highly suspected to have Sjogren's Syndrome, depression, and anxiety.

To be honest I'm not completely sure I didn't miss something up there, but I did my best. As it stands, I'm taking topamax for both my chronic migraines and my cervical arthritis, I'm on 2800mg of gabapentin currently not only for nerve pain but to combat my insomnia and anxiety, I'm on lexapro for my depression, two different muscle relaxers that I alternate every four hours to keep the spasms under control, my thyroid medication, continual birth control due to the insane amount of pain my cramps cause along with the hypotension and anemia that goes along with my monthly, and 5/325 hydrocodone three times a day. Which, especially given I've been taking opiates off and on since I was around 16, is a low dose. I can't take NSAIDs like ibuprofen or aspirin as they give me lower GI bleeds, and oral steroids cause the same. There is little that can be done for actual pain medications that aren't opiates, and frankly, my GP and now pain management physician would not prescribe them if they were unnecessary to mitigate the overwhelming amounts of pain I experience.

I have been receiving local steroid injections when possible, but you can only get so many of those in a year. Being on an opiate medication does not make me a junkie, it does not make me a drug seeker, and it does not make my doctor a drug dealer. It means I am in pain and I need pain relief.

The "opiate epidemic" is, frankly, poorly titled. The better term is a heroin epidemic. The overwhelming majority of reported figures are of individuals using illegal street drugs, or abusing medications that were not even prescribed to them in the first place. Actual pain patients do not abuse their medications; if anything we tend to take fewer than what is prescribed out of hypervigilance in not running out on a bad day or if our prescription gets cut off. Very few people who are prescribed opiates become addicted to them; addiction is a genetic anomaly in the brain. In a room of roughly 100 people, about 4 have the potential to become addicted, if I'm remembering my figures correctly here.

People are trying to punish responsible patients who are ill - and the doctors trying to help them - for the actions of people abusing street drugs. It isn't right, and it is in no way fair.

We pain patients are in no way drug addicts. We are however drug dependent. There is a difference. Addiction is in the brain. It runs your life. Dependency however is when that drug makes you able to live your life. No one calls a diabetic insulin addicted; they call them insulin dependent. So too with pain patients. We depend on medications to make our lives livable, to some degree. Without Pain medication many of us cannot carry out our day to day activities - Even simple things like showering or cooking a meal is too much because the pain we are in is debilitating.

This isn't about pain patients being junkies looking for a fix. This is about pain patients asking for the right to live our lives as closely to normal as we can.

Are you really going to sit there and tell us, "No?"