I Just Need To Vent

~Warning, cursing~ 

    

    As the title of this post might indicate, I just really need to vent right now. Last week, I had a full spinal MRI. The cervical MRI (Which, most of my issues are in my neck) showed my cerebellar tonsils (I have a Type 1 Chiari Malformation) were now at a 4.2mm descent, which, they used to be about 2.4 if memory serves. I’ve been having heart palpitations, fine motor skill issues, and numbness in my hands; all indicators that it’s quite probably the herniation causing a lot of my problems, including the increased pain in my neck, which also suggested I need a referral to a neurosurgeon to discuss decompression surgery.

    Today, I had a 10:45 AM telehealth appointment with my pain doctor to discuss the MRI results. I logged into the virtual lobby at ~9:20, just to be sure I didn’t have any technical difficulties. I get a message at 10:23 from a nurse, she was all, 

“You know your appointment is at 10:45 right?”

“Yeah, I just wanted to make sure I didn’t have any technical difficulties!”

“Oh, great! Thank you! I’ll get you checked in, someone will be on the call in a few minutes.”

“Thanks!”

    At 1:45 PM, after sending multiple messages trying to find out what was going on, I left the lobby. FOUR HOURS after my scheduled appointment time. Fifteen minutes later, I called the office to find out what was going on. They put me on hold, and when the receptionist came back she was like ‘*NP’s Name* has a really full afternoon, so we need to reschedule you.’

    WHAT. THE. FUCK? I waited FOUR GODDAMNED HOURS and NOW I have to reschedule because they essentially fucking forgot about me!? It got rescheduled for January 4th. Two fucking weeks from now. And while that may not sound like a very long time to some, when you can barely sleep at night because of the pain in your neck and the fact your heart randomly decides to skip beats, it’s a damn eternity. There’s so much that I flat out cannot do right now because of how badly my hands function, never mind the never-ending pain. 

    I’m just. So damned angry right now. 

Update: Life is a Rollercoaster

I know I’ve been promising an update blog for ages and haven’t been following through. Sorry about that; my energy levels have been fluctuating and most days laying around binge watching stuff or gaming is about all I have any real desire for.

It’s been a long while since I’ve gone into any detail about what’s been going on with me, I mean I’ll do posts here and there about this appointment or this problem, but nothing really in depth. Part of that was just plain laziness, and part of it was out of a desire to not jinx myself.

Some months ago, I had Supartz (hyaluronnic acid) injection series in both of my knees - one shot a week for three weeks per knee. This has actually greatly improved my issues with my knees, especially considering the rather disastrous results of the corticosteroid injections that were tried prior that made the pain so much worse. My pain level in my knees has dissipated, initially by about 70% during the peak of its efficacy, but now as time has passed and weather has gotten wonky, I’d rate it as about a 50% pain relief which is still nothing to sneeze at by any means! Also, for some reason, this has also stopped my knees from subluxing and dislocating, which is a very, very welcome, if unexpected, result. It’s been a great change in my life to have my knees maxing out at a 6 on my knee pain scale at their absolute worst when prior to the Supartz, they were living there as their normal.

Another significant improvement is my migraines. My pain doctor had, back in August, given me an epidural. I hadn’t had another severe migraine until one last month, and the minor migraines I did get were very short lasting and more than tolerable compared to the 10 days of hell they were. I have also completely weaned off of the Topamax thanks to the epidural. I am going to be having another one soon as a result of the migraine last month - he wants to ensure that I don’t have more significant flares - and I never thought looking forward to needles being stuck in my neck would be a thing.

As of May 20th, I have been a non smoker; I’m more than proud of this particular achievement as it’s an addiction I had had since the age of 16, and really was my only addiction.

(Also, Turk and JD, my gerbils, are both in good health, if now living in separate habitats due to fighting.)

Now for the not-so-great. The degenerative discs in my thoracic spine have been giving me hell, leading to severe muscle spasms in my upper back, at times outright debilitating and nauseating pain, and pain that, oddly enough, radiates into my arms - this is usually a cervical spine problem, not thoracic, but as my pain doc says, my body can’t ever make anything easy. This has thrown the brakes on the next step of rehabilitation for my hips, knees and lumbar spine as I was going to go for aqua therapy, but doc now wants a new MRI of my t-spine as the most recent was 2 or 3 years ago, and we’ll see what we’ll see from there.

I’ve also been having a lot of sinus headaches due to the Sjogren’s causing chronic sinusitis and sinus infections, so that’s always fun, and as a result my eyes have been giving me problems as well - though I’m not 100% certain it’s all due to my sinuses, and will be getting another eye exam soon to ensure all is well with my eyes, as autoimmunes as well as Ehlers-Danlos like to attack organs like the eyes and ears.

My energy level has been in the toilet, and I’ve been doing my best to rectify that, but with little result. I have been eating healthier - well, as much as one can eating microwave meals (healthy choice steamers mostly) - but my appetite is fickle when I’m so tired. I honestly would love to get more raw foods and yummy vegetables into my diet, but prepping and cooking as a spoonie with a fatigue flare is laughable. I’m just glad flash freezing works well and I know that the vegetables in my steamers are nutritious. So I have that going for me.

All in all, the next few months is going to be a long process of diagnostic testing and treatment experimentation, followed by the long road of rehab, but I’m hoping I’ll eventually achieve a more pain-free life; something I wouldn’t have dared hope for not long ago, but my pain doc and the ideas and solutions he has come up with have given me that hope again. It’s kinda nice.

~Jade

The Opioid Crisis Is Killing Pain Patients, But Not How You Think

Here she is again, going on for what, the third time now about The Opioid Crisis, Opioid Epidemic, Overdose Epidemic. Whatever it's being called this minute. Why, you must be wondering, do I keep going on about it again and again? Perhaps I'm hoping that eventually my words and my information will get through somehow, will sink in, will resonate. This is a subject of hot debate and for very good reason. The trouble is, however, that misinformation is not only widespread amongst the laymen in the public but amongst doctors and political figures as well.

Many are of the opinion that this issue is caused by prescription pain medications, that pain patients are overdosing left and right on opioids we are being prescribed. This is not the case. The number of prescriptions written for opiates has been falling dramatically since 2010 yet overdoses continue to climb.

The true cause of the overdoses in the opioid epidemic is illicitly manufactured and purchased fentanyl as well as heroin - both of which are opiates as they are, as is the case with most narcotic pain medications, derived from opium. These drugs are what are causing massive overdoses - fentanyl especially. Many who use heroin are unaware of how potent fentanyl is and overdose on their first go, or their dealer irresponsibly sells laced heroin - or worse yet sells fentanyl as heroin - with no warning, leading to immediate overdose.

Meanwhile, responsible chronic pain patients are being punished for the actions of people using street drugs. I am not denying that accidental overdoses happen amongst chronic pain patients; nor am I denying that some utilize opioids to commit suicide. However they are a small fraction in this epidemic. Even terminal cancer patients are now being denied adequate pain management because of these people shooting fentanyl and heroin into their veins. Doctors are being handcuffed whether by new laws or out of fear that they will be investigated simply for prescribing adequate pain management to their patients.

The result of this? Chronic pain patients are committing suicide at an alarmingly growing rate, and some are even turning to street drugs in search of pain relief and overdosing. This isn't because we're junkies unable to get a fix - this isn't because we're addicts. This is because we are in severe, constant agony that is in desperate need of pain control and we are being denied that aid because the government is far more concerned with its ineffective war on drugs than those who have no choice about the pain in their bodies and the fact they depend upon pain medication to function or even to have a life remotely worth living, which is the defining factor between someone who is dependant upon a medication rather than addicted to it. We depend on these medications for quality of life.

Some of these people are veterans, others are fire fighters or police officers that were injured on duty. Some are simply like me - born this way. And some simply were just hurt at work or in an accident and the injury causes constant and unceasing pain that has no cure.

Are we all to be punished because of these things? Are we to be denied a remotely desirable existence? Are we to be denied the right to take a breath without agonizing pain?

Because right now the only answer I am seeing in this whole mess is "Yes."

All methods of adequate pain control are being cut off one by one. Is it any wonder many are choosing death over a life of endless agony brought about at the hands of a government that doesn't understand the first thing about chronic pain? Nor that takes the time to listen to pain management doctors about what is truly necessary to treat their patients.

It seems less a war against the opioid epidemic and more an extermination ploy against chronic pain patients, and without the voices of those who do not suffer it sounding out with our voices that denying our pain is wrong, it will only continue, and the death toll of those in ceaseless pain will only continue to climb in this utterly unsympathetic and unempathetic climate that is being created.

Exhaustion Comes In Many Forms

I'm having one of those nights that I think we've all had at one point in time or another. Where a wave of completely crippling exhaustion washes over you and you can't recall ever feeling so tired in your life. But at the same time, you really can't think of a proper word for it; tired or exhausted seems to fall short. 

Tonight, for me, this exhaustion goes beyond just physical exhaustion, though its presence is certainly felt. I feel emotionally, mentally and spiritually exhausted as if something has squashes all of the energy out of me like grapes in a juicing vat.

 I know part of the mental and emotional exhaustion comes from the inundation of just... absolute awfulness on the news, and on social media. The constant conflicts that I find myself wandering into simply by civilly voicing my opinion. Of having to constantly defend my right to have my opinion, to believe what I do, to exist. 

I suppose it's only natural spiritual exhaustion would follow, when surrounded with an environment of so much hate and anger and turmoil.

As to the physical exhaustion, that I've done to myself. I've been borrowing spoons for nearly three days now, as my dad had to have an operation and will not be allowed to do his normal household stuff for two weeks. So on top of what I typically do, to which I have down to a science of spoon cost, I now have quite a lot more to do on top of it, and I'm at such a huge spoon deficit right now I don't know how I'll ever pay it back any time soon. 

My body is letting me know quite severely that it's unhappy with what I've been doing via a drastic uptick in pain, so even though I want to sleep - desperately need to, in fact - I can't, because painsomnia is a bitch like that. 

But really, I'm the only one who can pick up most of his slack while he's down. My mom already runs her ass off doing stuff, adding more onto her shoulders would not only be monumentally unfair but I'm certain it would have her on crutches at the very least in no time. 

As to my brother.... he could help, certainly. But he doesn't. Or at least has yet to. We'll see in the remainder of the two weeks, but I don't have high hopes. When it comes to pitching in with housework he tends to have more excuses than a pregnant nun in confession. I don't deny that he is in pain. But who the hell isn't, in this house? I fight back tears while I clean the kitchen and sweep the floor, and then don't bother fighting them when I take our dog out to do his business because it's the one place no one will notice them. But to him, his pain is always the most important and the most severe, screw anyone else. 

It pisses me off to no end. 

Anyway. I just. Needed to rant and vent a little bit. Thanks for reading and if you're a new viewer to my blogs, feel free to peruse older posts. 

Jade

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.