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.

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?"

Chronic Life, Chronic Thoughts

I don't use the term 'chronic thoughts' lightly in this title. I also don't, exactly, mean it in the sense that they're thoughts specifically dealing with any particular chronic illness, but rather chronically recurring thoughts that crop up of their own accord, cause me to fixate on them for a length of time, and eventually taper off again.

I'm sure I'm not the only Spoonie that feels this way, or that has these sorts of chronic thoughts, especially after a round of testing. Some of you may be aware that I recently had a thyroid ultrasound, and the ultrasound, while finding many small nodules and cysts and two quite large cysts/nodules (each is 1cm), none of them, per the report, are suspicious.

The problem is, I haven't been able to get the alarm bells in my head to stop ringing. I last had an ultrasound about 5 years ago, and there were only a couple of tiny nodules then. I've been on thyroid hormone treatment since my dx of hypothyroid/thyroiditis, but recently I've been experiencing a lot of pain in and around my thyroid, as though it's trying to push itself out of the sides of my neck. My voice is getting progressively more hoarse, and swallowing is becoming a bit more bothersome, as though I'm trying to swallow around something lodged in my throat, and my energy level is in the toilet.

My T4 is in the normal range (I'm not sure why T3 wasn't tested) however my TSH is extremely low - 0.040 (Normal is 0.270-4.200). My symptoms would indicate, if anything, my thyroid is being under-treated but the blood work would suggest either over-treatment or a pituitary issue (which is one reason why I've an appointment with an endocrinologist this month.)

I'm not usually one to worry after I get an 'everything's okay' report from a scan. But this time, I can't stop worrying. It's a persistent niggling in the back of my mind that at times rises to a near panic. The last time I had an unshakable worry about my own health, it was just before they'd caught the hypothyroidism. Now I'm left wondering if perhaps they'd missed something on the ultrasound, or if they should have done a biopsy on one or both of the large nodules. If there may be cancer they didn't catch on the scan. All sorts of fun thoughts.

To that end, I have an appointment with an ENT this month as well, for a second opinion. The pain in my throat is so bad sometimes that I can't sleep at night without an ice pack across it. It's, honestly, getting pretty ridiculous. If he even suggests a thyroidectomy I'm going to jump on it. It's not as though I won't be taking thyroid hormones the rest of my life, anyway.

The hard part, really, is getting my brain to stop running itself in circles, to stop re-thinking the same thoughts over and over, the same obsessive whirlwind of worries that I can do nothing about. It's hard not to worry, which is the weird part, for me. I don't usually actively worry over my own medical issues - it's business as usual for me. But this time... I can't stop, and that's the biggest red flag of all, to me, that there's something wrong.

We Spoonies are usually pretty in tune with our bodies. We have to be, really, to be able to get through the day. To know what's chronic pain and what's an injury. So it makes sense, also, that we would be able to know when our bodies are trying to tell us something that we can't feel, I think.

My Chronic Life

I've touched on a lot of topics on this blog, some personal and others just my views on things. I've given glimpses here and there about how my illnesses affect me, but I've never really gotten in depth about it, shy of the times I've had an emotional breakdown.

Those of you that follow my Twitter know I'm gathering information to do a comprehensive post on Ehlers-Danlos Syndrome, and as I'm wanting to make it as informative as possible, it's taking quite a while to do so. In the meantime, I wanted to do another Spoonie post, and thus, I decided to confront the one post I've been afraid to write. The one about my own chronic life.

Why have I been afraid to write it? For several reasons, really. Some silly, some not so. Mainly that I have a constant worry that normies will think my descriptions hyperbole. Given how much genuine ableism is on Twitter, this isn't an unfounded worry. Another worry that I put into the 'not silly' category is other disabled individuals will read it that have more severe symptoms and think myself a whiner, or less severe symptoms and think they are the whiners. I don't write this to be a comparison between myself and other Spoonies out there, but rather just to share my story and my experiences.

A 'silly' category worry is that I'll be writing and think myself a whiner. Which I think we all do at one point in time or another. We think of how many people have it worse and feel we have no right to complain about our lot. But the truth is, we do. Just because someone out there has it worse doesn't mean we don't have it bad, ourselves. Should we be grateful that we don't have it worse than we do? Of course. But that doesn't mean we aren't allowed to feel grief, or sadness, or anger for the hand we've been dealt.

I digress.

My diagnosed illnesses are as follows, and in no particular order: Fibromyalgia, ME/CFS, Hypermobile Type Ehlers-Danlos Syndrome, Hashimoto's Thyroiditis, Osteoarthritis, Degenerative Disc Disease, Chiari Malformation Type I, Irritable Bowel Syndrome, Scoliosis, Chronic Migraine, Chronic Acute Insomnia, Chronic Sinusitis, Tenosynovitis, Synovitis, Chronic Muscle Spasm, Depression, Anxiety (Social and General), Sebhorric Dermatitis, Arrhythmia, Bursitis of the hips

Suspected illnesses/other: Sjogren's Syndrome, Dysautonomia,  history of elevated ANA (hence why I'm on a constant watch for Lupus), undiagnosed issue with knees that causes constant pain and moderate-to-severe swelling, severe loss of lordosis in the neck (my cervical spine is ramrod straight, in layman's terms)

All in all, it's safe to say I have too many acronyms applied to me, lol. I first became chronically ill at the age of 10 after a whiplash injury. Unsurprising as spinal cord trauma often triggers the onset of Fibromyalgia. A following bout of Epstine-Barr Virus when I was 13 only added insult to injury and life rapidly went downhill from there. More than once in my life, I looked like a heroin junkie from the track marks on my arms as doctor after doctor after doctor ran numerous tests trying to find out what was wrong with me. I didn't officially receive my Fibromyalgia diagnosis until I was 18. Eight years after the onset of trademark FMS symptoms. I didn't find out about the Chiari until a few years ago, after neurological symptoms in my hands and arms warranted a cervical MRI. Come to find out after I requested my medical records, the low-lying cerebellar tonsils were noted on a MRI when I was 16. The doctor I was seeing then never told me.

Throughout my life, I'd heard the same phrase over and over again. 'You're too young.' Whether it was to be in so much pain, or to have so many symptoms, or to be given any sort of pain relief. I was too young. I think many doctors thought I was making it up, until at the age of 14 one doctor discovered my 1:640 ANA. I was sent to an internist who, though it had only been a couple of months, ordered a second one. It was 1:1280 by then. Lupus and other autoimmune panels came back negative. No one had a clue what was wrong.

By the time I finally found the doctor I'm now seeing, the doctor I had been seeing before him completely ignored the fact I'd jumped from 95 lbs at 5'7 (a combination of an overactive thyroid and anorexia) to 185 lbs in only a few months. My current doctor (who I adore and have followed from partnership to partnership loyally and would do to the ends of the earth) ran a thyroid panel. An uptake and scan came next, followed by an ultrasound. I had Hashimoto's Thyroiditis. My free T3 and T4 were insanely low, indicating, obviously, hypothyroidism. He got me started on synthroid and not only did I discover my weight shedding and my insane mood swings vanishing, my energy was coming back.

He's also the one that discovered the Chiari, the Sjogren's, and pretty much everything else aside from the HMEDS, which was diagnosed by a rheumatologist that I'm also currently seeing. (I have to admit, it was pretty fun when she was evaluating me for it when I made her cringe by touching my right thumb to the inside of my right forearm! LOL!)

I've tried to work off and on throughout my life. My longest stint of employment was 3 months. Between my chronic migraines and the widespread pain in my body, I call off too often for anyone to keep me employed. If I had a schedule to know when my body would hit a flare and have me bedridden with pain, or when a migraine would knock me on my ass for anywhere from three to ten days in which I'm in bed with a sleep mask on and earplugs in because the faintest light or tiniest sound is excruciating and has me vomiting into the nearest receptacle, that would be a different story I think. But the Spoonie body comes with no such convenient alert system.

On good days, I'm Supergirl. I can zoom around the house, sweeping floors, vacuuming rugs, doing laundry, dusting surfaces, you name it. I'm a one woman cleaning army. But those days are random. Usually instead of good days, I have tolerable days, where I can move around with a moderate level of pain and take care of my own needs, maybe go grocery shopping with my mother, or go to the doctor if I have an appointment that day.

Bad days are spent abed, typically with ice or heat on my knees, neck and head while I watch a show or putz around on Twitter. Those days, I can't even take care of my own needs, aside from making it the few feet to the bathroom and back. Eating is out the window; even if I could manage to fix myself food, I have no appetite to eat, and the nausea from the level of pain I'm in would ensure that it would immediately come right back up. On bad days, I've even had to cancel doctor appointments. I'm literally too sick to go to the doctor. Thankfully, my doctors understand.

I've seen ableists comment that 'well I know people with disabilities that work, you're just lazy.' They fail to understand that not everyone that is disabled has the same disability and the same restrictions. They don't understand that I have to be careful with how hard I cough, or that sneezing is a gamble, or even rolling over has to be done with care. Why? Because every one of those things risks dislocating a rib, or my shoulder blade. It sounds like hyperbole, but it's completely true. I've subluxed (partially dislocated) ribs rolling over before. In bed. I've fully dislocated ribs during coughing fits with bronchitis.

Having hypermobile EDS means that the most normal, every-day activities risks joint dislocation for me. I can be walking and suddenly my ankle will roll of its own accord. The only thing I can do during those moments is pray that my ankle, knee or hip doesn't dislocate on the way down. Hypermobile EDS means that I'm 'double-jointed.' For some, the extent of the hypermobility is limited to certain joints. But my hypermobility is wide-spread; it extends to every joint in my body. Hypermobility is caused by the tendons and ligaments being too loose to properly support the joints to keep them from bending further than they should, or to keep them from dislocating. Which makes hyperextension very easy, and dislocation hilariously simple to achieve on accident.

It also means I'm doomed to the inevitability of arthritis in every hypermobile joint, in the long run. I already have it in my neck, in my shoulders and in my hips, as well as in my knees to a small degree, though they're not certain as to the full extent of what's going on with my knees. They're an enigma to them as much as myself.

Fibromyalgia is another one that's misrepresented by TV ads and what have you. You'll see ads for Lyrica or something and it's like 'take one pill and life is great again!' Yeah, no, that's not how it works. Let me clear something up straight away here; fibromyalgia is different for every patient. Every single one. It's a syndrome, which means it's a conglomeration of symptoms and the range of severity of these symptoms is variable from patient to patient, and not every patient will have every symptom or even the same symptoms. My experience with fibromyalgia is one of widespread aches and pains, and a constant feeling of having a sunburn all over my body. Sometimes that feeling of being sunburned intensifies into being wrapped in electrified barbed wire. Fibro-fog is a term many people have likely heard; it's a common symptom of fibro, where we deal with a period of mental fog. It can make us forgetful and/or disoriented, and we tend to do some pretty silly things during these times.

My most memorable was as follows -  I went to get a bowl of cold cereal. We keep our cold cereals in a cabinet at the end of the kitchen, and our sugar bowl on a near by rolling cart that our microwave is on. I fetched both of these things as well as the milk from the fridge as it was nearby. I took care of making my bowl of cereal, and put the sugar in the fridge,  and was trying to fit the milk into the microwave and was getting extremely frustrated with it not fitting before I realized what I was doing and laughed at myself. I put the cereal away and returned the milk to the fridge. I only found out that the sugar was in the fridge several hours later when my brother asked why the sugar bowl was in the refrigerator.

Times like these, we can only laugh at ourselves. There's really no other choice, if you don't, you'll likely wind up crying at how ridiculously frustrating it is trying to get your brain to cooperate and perform the most simple of tasks.

All in all, daily pain of varying intensity is my life. There isn't a single second of any day, even good ones, in which I am completely pain free. Pain medications (even narcotics, like the Norco that I am now on) don't eliminate the pain, they just take the edge off, but believe me, that is a wonderful improvement. I use various assistance devices to get through the day, especially if I have to be out and about, whether it's braces on various joints, one or both arm-cuff crutches, or, my nemesis, the motor chairs in stores. (I hate those things...and the judgmental looks people give me when I have to use them.)

I understand that living in constant pain is a hard concept for able-bodied people to understand. Pain is fleeting for you. It's temporary. It goes away when an injury heals, or after a few moments when you stub your toe, or when you take Tylenol for your headache. But for most of us, it never, ever goes away completely. Every second of every day, we are in pain somewhere. It never stops. It never goes away. It interferes with our lives in every aspect.

And it leaves us exhausted.

Chronic Fatigue Syndrome is a big one that many of us have, and that truly adds insult to injury. You hear the term Chronic Fatigue Syndrome and you think 'oh, you're just tired.' No. Chronic Fatigue Syndrome, or, as it's now known, myalgic encephalomyelitis, is more than being tired. It's being constantly exhausted and that exhaustion never goes away no matter how much we sleep or rest. It often comes with aches and pains of its own, as well. I have both insomnia and CFS, and it is absolute hell. It's bad enough sleeping and waking up just as exhausted as when I went to sleep. It's worse feeling more and more exhausted because I can't sleep for as long as 72 hours before I finally manage to crash out.

It's been found that people with chronic illness, especially those with chronic fatigue, are functioning in a perpetual state of exhaustion that would be comparable to a normal person not sleeping for three days and then attempting to function normally. This sounds hyperbolic, but, again, it isn't.

Some of us - myself included - get so exhausted or in so much pain that we can't even shower or bathe daily. And if we express this while talking amongst ourselves because we know that we'll find a sympathetic ear in one who can understand, oft times someone else will horn into the conversation with how 'disgusting' it is.

While I feel happy for those of you that can shower daily, or eat daily, or do anything else normal on a daily basis, we can't. Not always. So instead of calling us out on how "lazy" and "disgusting" we are, try imagining living in a body that is constantly at war with and attacking itself. That is constantly exhausted and in agony. And that we do what we can, often seeing to the most important things first, because we know we have to pick and choose what gets done every day. Sometimes, a poor man's bath (washing up with a cloth in the stank zones) is the best we can do because we just don't have the spoons to do more, having used them on more important ventures. Sometimes, we can't even do that. Your judgment is not necessary nor desired. It's just rude and completely lacking in compassion.

The fact is, I am constantly exhausted, I'm constantly in pain, and my body is literally attacking itself with its own immune system. There isn't thing one I can do about any of it. I wish I could. I wish I had a different body. But I don't. I don't know why I have the body I do, with the problems it has. But I do. I make the best out of it, but sometimes, my best is just getting out of bed to go to the bathroom and coming back to take a nap because walking a grand total of 30 feet was so fucking exhausting that I need one. And you know what? I'm getting okay with that.

I've had doctors judge me, I've had strangers judge me, I've had family judge me. I'm not going to be judgmental of myself in a negative manner. Not when I'm in as much pain as I am already. If the best I can do isn't good enough for anyone else? Screw them.

Spoonie Problems Vol. 1 - Sleep

Sleeping as a Spoonie can be a major problem. I don't need to tell ye Spoonies this, but for the non-Spoonies reading, well, be prepared to be informed, LOL.

There's the times where we're exhausted from depression but cannot sleep due to anxiety gnawing away at us. There's the times where we're battling a flare and are completely worn out, but the pain keeps us awake. So in essence, we desperately need sleep to help reduce the pain, but the pain keeps us awake so we can't sleep to reduce the pain...vicious cycle. When we -do- finally manage to fall asleep, often the sleep is broken by aches and pains waking us throughout the night, or by vivid and unpleasant dreams. Or some combination of the two.

If one has IBS or some other digestive disorder, sleep also becomes problematic because you never know when you'll be making a mad dash for the toilet because of something you ate that was perfectly fine yesterday to eat that your stomach says 'nope, not today!' on.

Then there are those times where you're just awake, for no good reason whatsoever. You're completely physically exhausted in every way possible, even just moving your arm feels like you have a ten pound weight attached to it. But your mind is so wide awake, it's like someone gave the hamster on the wheel in there a boatload of sugar. Your thoughts may or may not be racing, that part can vary, but, you're just. Awake. No matter how hard you try, you can't sleep. You can lie in the dark for hours on end and just be awake, driving yourself crazy because you're so damn bored  and frustrated you want to scream and bash your head into a wall. You may be able, eventually, to snag a couple of hours of sleep. Or this may go on for as many as 72 hours or more before you can finally crash out; for myself, I tend to have cycles when these fits occur. I'll not sleep anywhere from 24-48 hours, sleep for anywhere from 6-12 hours, and repeat the process for as long as two weeks before it finally breaks and I can get regular sleep again.

Many chronic illnesses come with sleep disorders; Fibromyalgia, Elhers-Danlos Syndrome, Lupus, Chronic Fatigue Syndrome, and Sjogren's Syndrome all do, just off the top of my head. Somehow they futz with our internal clocks, some people more than others, as not every patient is the same, and in my case, sleep aids do next to nothing to help except turn me into a zombie after the 1-2 hours I sleep.

And truthfully, no matter whether we sleep on a normal schedule or a wonky one, we still tend to wake up drained, as though we barely slept at all. We don't get much restorative sleep when we sleep, so our bodies don't get the same amount of healing time during rest as a normal person, leading to that fatigue when we wake up. The only time I don't wake up feeling exhausted is when I manage to sleep a solid 12-14 hours two or three days in a row. Those times are rare, but they happen, and I wake up feeling actually rested for a change by the second or third day.

Currently I'm sitting here, having slept about 9 hours, feeling like I haven't slept in days. I'm barely holding my eyes open, moving is a feat in and of itself, and the day is far from over. I'm in the middle of a Fibro flare that's been going on for probably 3 months now, and while it's had its brief lulls where it's been more tolerable, the fatigue has been ever-present and absolutely overwhelming. I think it's been brought on by having been doing too much for a while, and extended by getting sick off and on throughout the flare. I'm hoping it'll let up soon, so I can start feeling remotely human again. It'd be a nice change of pace.

I hope you're doing well, Spoonies, and that your bodies are being kind to you; and that you are being kind to yourselves. :)

An Ode To the Spoonie Community

So much is strange in this life full of illness,
Nothing works right, too much pain, why must I feel this?
Spoons hell, these days I need ladles,
Every day it seems like I get more diagnostic labels.

I was a kid when all of this began
But I'm strong, I'll fight, it's just who I am.
I won't let it beat me, I won't let it keep me down,
'Yeah, right, who you kidding?' It whispers, when no one's around.

That's the struggle, you see, it's not just the pain,
It's yourself, your mind, it makes you doubt if you're sane!
"Am I really sick? Am I just crazy?"
"Maybe they're right. Maybe I am just lazy."
How many times have you thought the same?
How many times has your brain played the game?
You just thought about it, you just lost, you see,
No, not that game, the other one; your enemy.

You're stronger than you think, you're stronger than you know.
You smile when you wanna cry, you laugh instead of scream, the pain doesn't show!
We all wear that mask, we all fight through this shit,
We all crawl and struggle our way out of the pit.
The one so full of pain and despair,
So real that it burns and it claws and it tears.

We reach out for help, we reach out for a hand,
We reach out praying to God for someone to understand!
But no one does...not our friends, not our family...
We're alone, in the pain, the fatigue, the misery.
Until we discover each other, right as we're about to fall,
A hand grabs our own, and suddenly we hear a voice call,
"It's okay, I'm here, I understand. I know your pain, it's real, not in your head."
And suddenly that thousand pound weight on our ankles lifts along with our dread,
And for the first time, we can smile and laugh, and we can hold up our heads!

We have each other, forever and always you see,
All together, one and all, the Spoonie Community.
We overcome race, gender, and orientation,
Religion, politics, and geographic location.
We span the world, one hand in the other,
Brothers, sisters, fathers and mothers.
We help each other feel less alone, we know we're there,
And most of all, we know there are always people who care.

It doesn't matter now, what trouble may come my way,
Because I'll never face it alone, not any second, of any day.

~ Namaste

Finding Ways To Live

I'm very sorry it's been so long since I've posted on this blog - and moreover since I've done a post relating to chronic illness! Everything else seems to have kind of taken over, but I have a secondary blog for that, now, so there's that, ahaha.

There truly is one recurring theme, or would, perhaps, the better term be phrase? That I see amongst my fellow Spoonies, and that often is, 'I just want to find a way to live my life.' And isn't that really the gist of it all? Even for lifers like me, who genuinely have very little to no memories - if ever they had a life before, for those born with their illness(es) - of life before illness, finding ways to live their lives in the face of chronic illness is truly a constant and ongoing struggle. Some illnesses are more obtrusive than others, some are progressive, some aren't, and some people seem to have more and more illnesses just heap onto their heads like mounds of snow as they slide down a hill in an avalanche of 'what the hell just happened?'

Maintaining any sense of normalcy can be hard, or even impossible, on some - if not many or any, for some of us - days, yet I think it's the one thing we all strive for, the one thing we all fight for on this battlefield in the war we wage with our own bodies every second of every day. Sometimes, finding ways to simplify getting around can feel like giving in - using assistance devices, for example, often makes me feel as though I'm "caving in" to the pain and weakness in my knees and hips from the Fibro and EDSM (Elhers-Danlos Syndrome Hypermobile-Type). The days I have to use the little motor scooters in the stores? Even worse.

Lately, accomplishing anything has been the biggest challenge for me, my heart hasn't been cooperating with wanting to do much, and I begin to greatly wonder if I have Postural Orthostatic Tachycardia Syndrome(POTS, for short) as my symptoms alter and alleviate depending on, you guessed it, my position whether sitting, lying down, or standing. I plan on bringing up a tilt-table test with my cardiologist when I see him in December.

Still, in spite of this, I still try to find ways to deal, to stay active, whether it's finding exercises I can do in bed (pull your minds out of the gutter, now, LOL!) on my absolute worst days, or pushing through the pain and fatigue, which in and of themselves are often overwhelming, throwing on ACE bandages and joint braces, and exercising anyway until my heart starts to throw a fit. A body in motion stays in motion and inactivity is the root of many evils with the Spoonie body, in a lot of cases. Sometimes these exercise bursts just wind up being one-woman dance parties to work up a good sweat - it's silly, it's fun, it's good cardio, and usually I throw some weights in my hands and get some upper body strength training in in the process (when I can find the blasted things.)

But there are always, always those days where the physical and mental symptoms combine to kick me onto my ass where I can't seem to will myself to do much but read or binge watch some Netflix. You know what? Those days are okay, too. Because that, too, is a part of finding a way to live with my illness. Those days of listening to my body and mind and giving them what they need are just as important as pushing through everything with my proverbial middle finger in the air to the pain, because our bodies need that downtime, too, far more often than those of able-bodied people.

All in all, we all have to find ways to live with our illnesses, not just survive with them. If you find ways to accomplish tasks, if you find ways to do things you enjoy, if you find ways to laugh and smile throughout the day in spite of your illnesses, you aren't just struggling, you aren't just surviving, you're living, and that is something to be damn proud of.

Chronic Life - Why I Refer To Us As Warriors

It's easy for some to look at someone with chronic illness and see a normal person. Unless the person needs some sort of assistance device that can't be easily (or not so easily, but still manageably) hidden, the majority of us look perfectly healthy on the outside. In fact, those of us who've suffered chronic illness for extended periods have often made this our goal - to perfect the mask of normalcy. We learn to smile and look happy regardless of the amount of pain we're in, or how exhausted we are. We learn how to cover the dark circles under our eyes and the paleness of our faces with makeup so we don't look more dead than alive (and that isn't hyperbole.) Those of us with the tendency to bruise easily have outfits for all seasons that can easily hide bruises on our arms and legs that crop up just from leaning against something - hell, I've bruised just from someone gently patting my arm, before.


"You don't look sick" is something we all have heard at least once, and infuriating as it is to hear, oft times it's also our goal. We don't want to be judged, labeled, looked down upon, pitied for our illnesses. We want to get through our outing as efficiently and quickly as possible so we can get home and collapse upon the nearest flat surface in a mixture of pain and exhaustion, so worn out by something so simple that we often wonder if there isn't some sort of vampire attached to our necks draining our life force away every time we move with a group of invisible friends attacking every aching part of our bodies; and that's just the simple stuff.


The more complex stuff is... Well, more complicated. For many of us with digestive issues, even eating is a huge undertaking - we have to think about what we eat, because eating the wrong thing can have us doubled over in pain or so bogged down in added fatigue that the rest of our spoons will be used up for the day, and for some, eating the wrong thing can be deadly. In my case, eating -anything- often sends me to the bathroom within ten to fifteen minutes of my last bite; I have irritable bowel. It doesn't matter what I eat, portions of it just go on a fast track straight through. TMI? Probably, but it's a fact of life for myself and many others with the syndrome. Then there are the days I'm terrified to eat at all because my IBS is acting up so severely that even before I eat I can barely dare to let the bathroom door leave my sight, so how can I even think about adding fuel to that fire?


People with diseases like celiac or Crohn's or any other number of digestive diseases have a lot of dangers they face as well; in their case, whole sections of their intestines can become necrotic and need removed. Many of them wind up needing colostomy bags, at some point, from having to have so much of, if not their entire, colon removed.


Our bodies are at war with themselves every second of every day, yet on the outside, we look just like anyone else. That's the curse of the invisible illness. Then again, if we looked how we felt, people would be clamoring to rush us off to the hospital. For the overwhelming majority of us, our conditions are life-long, and most are progressive. For the conditions that aren't, often times other conditions will arise to make life even more hellish.


This is why I refer to people with chronic illnesses as Chronic Illness Warriors. We ARE warriors. We're fighting a war every day. With ourselves, with society, sometimes even with our doctors.


I know I touch upon a lot of men's issues lately, but really, men especially have a problem when it comes to chronic pain, namely with diagnosing conditions like fibromyalgia in which the majority of sufferers are women; most doctors won't even think to check a man for fibromyalgia trigger points, and men can be more hesitant about going to the doctor for things like chronic pain due to fear of seeming weak or less like "a man" thanks to cultural and societal expectations of masculinity. Men are expected to be strong and to just tough pain out. Same for fatigue. They'll generally figure they're just worn out from work or what have you, and aching from over-doing something at the gym or on the job, not putting two and two together to bring up to their doctor. It usually isn't until something REALLY goes wrong that they go in to the doctor, and in the cases of conditions like Crohn's or Lupus, amongst others, this can be extremely bad. Lupus is an autoimmune condition that tends to attack the internal organs, often the kidneys first; by the time it's progressed to the point you realize you have a kidney problem, treatment has to be aggressive. A former friend didn't even realize he had Crohn's until he nearly asphyxiated on blood in his sleep. He thought he just had IBS or something similar and shrugged it off. So, gents, please, if you have aches and pains, especially out of the blue, do some research. Check yourself for Fibromyalgia trigger points - it could well be that Fibro is more common in men than current statistics show, it just isn't diagnosed. If you're coming up positive for the trigger points, talk to your doctor, ask him or her for a referral to a rheumatologist if they aren't knowledgeable about Fibromyalgia. But I'm asking - no, begging - you... Please, take your health seriously. Don't try to be tough and all.. Alpha male. If something doesn't feel right, get checked out if you can do so. Catching these things early can make all the difference; it can mean getting the right treatments, or at the very least starting the process of finding the right treatments through trial and error. Often times, there is a lot of testing involved which is time consuming in and of itself. But if it turns out to be nothing more than a strain or sprain... At least you know. Stay on top of your health. Don't assume you're bulletproof, and don't feel like you're being weak or a whiner for going to the doctor because something hurts. That's what they're there for. You're just being proactive in your healthcare, and there is absolutely nothing wrong or weak in that. In fact, I'd say there's nothing MORE manly than having the strength and courage to get checked out and take care of your health, even if it turns out to be nothing, regardless of what BS society wants to try to make you believe.


The truth of it is, chronic illnesses attack everyone, regardless of age or sex, and we're all warriors, fighting battles unseen by society and by all but our closest friends and family... And even they often don't understand what we're going through. The only people who truly do understand are others who are experiencing it. They're the only ones who CAN understand. For healthy, able-bodied people, pain is temporary; it's impossible for them to TRULY conceive much less at all relate to pain that never fully goes away, at all, ever. This isn't their fault, it truly isn't, it's just a shortcoming of the human brain.


The fatigue... For most people, when they hear 'fatigue' they just think 'tired,' but it's so much more than that. Most people can relate to being exhausted. But they can go to sleep and wake up feeling better. They, again, can't relate to being exhausted, going to sleep, and waking up as exhausted or even more exhausted than when they went to sleep. But it's more than simply exhaustion; it's not just being tired, it's weakness, too, in the muscles and limbs, and a slowing of cognition. Tasks take us longer, our memory is faulty (I know very few people with chronic fatigue that don't have post-it notes or a notebook on hand at all times), we often forget what we're doing in the middle of doing it! And sometimes, by the time we're even close to being halfway done with a chore that isn't even very strenuous such as folding laundry, we have to stop and rest because our bodies just can't handle it anymore. We miss out on family gatherings, on fun occasions, hell, even appointments with doctors because we're simply too worn out to go. The curse of chronic fatigue is to attempt to wave at your life as it passes you by while you lay curled up in a bed or on the couch trying to give your body the rest it so desperately needs but cannot acquire.


To be honest, for me personally, my conditions would be easy as hell to deal with if it was just pain. I can manage my pain through coping skills and medications. But the fatigue on top of it is what makes it unmanageable. There's no prescription that will allow my body to achieve truly restful sleep and let it heal like a normal person's body would in a restful state. Sleep aids are often ineffective in treating chronic fatigue syndrome and most of them are habit forming, so even if they DO help in the short term (most of them don't help long term, even if they do short term) when you finally need to come off of them, your body will be so used to the medication helping it sleep, it can't get to sleep without it! So you then have to begin a weaning process which can take variable lengths of time, and is incredibly irritating and frustrating to go through.


I really do wish I could be like everyone else; out there working a shitty job for shitty pay so I could pay shitty bills and complain about all of the things everyone else complains about that I would LOVE to have to complain about. But... I don't. What I have to complain about... Only other Spoonies and really old people understand. Morning stiffness, achy joints and muscles, migraines, the inconsistencies of speed and comfort of motor scooters in stores, non-handicap people parking in handicap spaces - or even worse, in the striped zone beside them (SERIOUSLY STOP FUCKING DOING THAT!!! THAT'S FOR PEOPLE ON CRUTCHES OR IN WHEELCHAIRS TO BE ABLE TO GET IN AND OUT OF THEIR VEHICLE, ASSCLOWN!) - the cost of prescriptions and medical bills, how weird some of my latest test results are, how many pills I have to take every day just to have a semi-livable life...


Don't get me wrong, I'm grateful for what I do have. I know I could have it so much worse. But I'm also so incredibly..... Angry, and I suppose bitter, sometimes, when I see people complain about the things I would love to have to complain about because they don't realize how incredibly fortunate they are to HAVE those things to complain about. They take it for granted, completely. Sure, your job sucks. Sure, your pay is shitty. Sure, you have tons of student loan debt. But you -get to have a job.- You -get to go to school.- I don't. I can't manage it. Either thing. I've tried. It's too much, between the pain and the fatigue, and you have no idea how much I would love to have a shitty, stupid job at a fast food joint or answering phones somewhere, or going to school even if it meant I would have tons of debt to pay off. Or making a car payment or being stuck in traffic, because then I'd have a car and I'd be able to drive, and I could rock out to my favorite music while being stuck in that traffic that I can't do anything about anyway. Or paying rent/making a house payment... Because then I'd have my own place, and not be living at home with my parents.


If you're a healthy, able-bodied person, and you're reading this and have gotten this far... Please don't take this as me trying to guilt you. I'm not. Nor am I trying to have a pity party here. But, do me...and every Spoonie out there (especially the ones who are severely disabled), a favor. Look around you, and be grateful for what you have... Get up, run around a minute or two - literally run; most of us can't do that. Don't do it because I'm asking... Do it because I can't. Do it for me... And be thankful for that ability... But most importantly. Never take anything for granted. Not a single thing. Because chronic illness can strike at any moment, at any age, for any or no reason. I pray it never strikes you, Normie, I truly do.


But, if it does, the Spoonies are here for you. We are. We're a community - a culture, really, all of our own - that bands together to support and help one another, to help educate each other, to be there for each other. We'll be there for you, too, should a sleeping beast rear its ugly head. So never be afraid, and never feel like you're alone. I promise you, you aren't, and you never will be. We're here. We're strong, even in our weakest moments, we're strong. We're strong enough to help each other to our feet when we've fallen to our knees and feel we can't move another step. The Spoonie community has helped me so much, most without even realizing it. We'll be there for you should you ever need us, just like we're here for each other.


To my fellow Spoonies;
Thank you for being who you are. You probably don't hear that very much, if at all. So I'm telling you that now. You have so much strength, and so much courage, even if it doesn't feel like it. Just getting moving at all during the day takes so much of both of those things, I know it does, and you shouldn't undervalue that. Don't sell yourself short. Thank you for every Spoonie meme you share, for everything you post on Twitter, Pinterest, Tumblr, and Facebook that makes me smile, that makes me laugh, and that makes me nod with a smirk of agreement as I deeply relate to the sentiment. Knowing you're there, knowing you understand, and knowing I'm not alone... It's one of the most powerful feelings in the world. It's what keeps me going on the days I don't have anything left in my tank to keep my engine plugging along. You do. You keep me going. You're there, reading my blog right now, maybe, or seeing something I posted somewhere along the way on one of my accounts somewhere. We're connected, thanks to the Internet. I won't disappear. I promise you. I'll never give up this fight. I'll never give in. I'll always keep fighting in this never-ending war, and it's thanks to every one of you. I don't know who you are, I don't know your names or what you look like, but you keep me going, and I care deeply about you. Don't ever think for one second that no one cares; I do. I always will. Always. I'll never stop caring, and I'll never stop hoping and praying for pain and fatigue free days for you, and a cure for every single one of us, and, as always, maybe just a couple of more spoons, for a bit of fun, every now and again.

Take care, everyone, keep being who you are; love yourselves, even if you hate your body for what it's doing to you... Love the soul and mind within it - it's beautiful.

Handy Medical Abbreviations and Laboratory Terms

So, we all know writing things down can be a pain in the butt, especially when it comes to medication lists that new doctors want, and some things it's just nice to have a reference for as far as definitions. Well, here are some that I use frequently - some are abbreviations, some are lab tests that I have to have on the regular that friends may not know what they are, and some I use journaling just for my own energy savings. Some of these I picked up from med term and pharmacology when I was briefly in college, but most I learned from my mom and from reading prescriptions and lab orders/results and researching them to find out what meant what, and what everything was for.

For meds!

a.c. - before meals
ind. - daily (So for instance as I'm on 10mg lexapro and I only take it once a day, I'd write 10mg ind.) [Note: This is also abbreviated as o.d. but as o.d. also stands for overdose, as well as the right eye, ind. is more often used - q.d. is sometimes also used, but it's easily mistaken for 'q.i.d.']
q.d.a.m. - once daily in the morning (Often seen on thyroid hormone scripts) 
q.d.p.m. - once daily in the evening (Often seen on medications with sedating effects)
b.t. - bedtime (Typically for sleeping medications) [Note: Can also be written as q.h.s.]
b.i.d. - twice daily
t.i.d. - three times daily
q.i.d. - four times daily
p.r.n./PRN - as needed (may be paired with any of the above 'daily' abbreviations)
NTE - Not To Exceed (e.g. - 1-2 tablets every 4 hours PRN NTE 8 tablets daily)
QWK - Every week (This one doesn't come up too often, but you'll see it sometimes for high dose D3, for instance; I once had to take 50,000 IU QWK to compensate for a severe D3 insufficiency)

Labs!

ANA - Anti-nuclear antibody; this lab is done to track inflammatory processes in the body, and is one of the first go-to tests for anyone presenting symptoms that are consistent with RA, Lupus, ETC.

TSH - Thyroid Stimulating Hormone; this actually isn't a test for your thyroid itself, but rather a test of how much of the hormone that stimulates your thyroid to release T3 and T4 is in your blood. This is, more precisely, a pituitary test. A low TSH with a normal or high T3 and T4 often points to hyperthyroidism.

Free T3/T4 - This tests how much T3 (Triiodothyronine) and T4 (Thyroxine) are in your blood; these are the two hormones secreted by your thyroid, and while the thyroid is a small and unassuming little organ, the absence, excess or diminished levels of its hormones can wreak havoc with basically every system in the body, including the brain, heart, nervous system, ETC. People with thyroid difficulties are often erroneously diagnosed with mental illnesses if their thyroid condition is untreated, only to find their mental symptoms greatly subsiding if not disappearing entirely upon treatment.

eGFR - Estimated Glomerular Filtration Rate; this test measures on pure estimation alone the amount of fluid being filtered through the kidneys. HOWEVER, DO NOT WORRY OR PANIC IF YOUR EGFR IS LOW IF YOUR OTHER RENAL FUNCTION LABS ARE ALRIGHT!!! I was in a full tilt panic once because I thought I was going into kidney failure because my eGFR was only 73 after being 88 just a month or so before, but my Rheumatologist was quick to reassure me: as long as your Creatinine and BUN are a-ok, you're NOT going into kidney failure. You can have 3 different labs read the same blood on the same day and have 3 different eGFR results. And now, let's discuss those two labs.

BUN - Blood Urea Nitrogen test; this is, as I mentioned, a kidney function test and one you'll see regularly during a full blood panel. Urea Nitrogen is what's formed when protein breaks down. High levels can indicate kidney failure or kidney disease, congestive heart failure, GI bleeds, or, for something far less scary, simple dehydration. Low levels can indicate liver failure, malnutrition, low protein in the diet, and over-hydration (yes, there is such a thing, lol!)

Creatinine - Creatinine is, as I understand it, a waste product of a phosphate that's broken down by the muscles in our bodies, and as such is being constantly produced and constantly filtered by our kidneys. High creatinine levels can be caused by a blocked urinary tract, kidney problems, muscle problems, or again, dehydration (water's important peeps!) whereas low levels can be caused by malnutrition and conditions that lead to reduced muscle mass.

Anion Gap - This one used to confuse the crap out of me. It sounds like a national park, not a lab test!  Basically, what the anion gap is, is the measurement between the sum of positively charged ions in your blood, being sodium and potassium, and negatively charged ions (anions), being chloride and bicarbonate. This measures the acidity level in your blood, amongst other things, and can help diagnose conditions like hypercalcemia, hypermagnesmia,  and metabolic acidosis, and for patients on Lithium, it can help them get an idea of how much is in your blood, as Lithium is a sodium.

SO I think that covers the list of labs that had confused me when I was just getting into all of this mess, and hopefully I helped you guys out, gave you some info, etc. :)

Could It Be POTS?

So, I've been having cardiac symptoms for some time now. Palpitations, sometimes accompanied by chest pain, randomly feeling like my heart disappeared while feeling woozy and short of breath before my heart suddenly flops and starts pounding, racing heartbeat, low bp, narrow pulse pressure, all that fun stuff.

I had been put on a beta blocker (Inderal, standard, not extended) for my Chiari Malformation to try to help the migraines, and at first it helped the narrowing of my pulse pressure, but a few months afterwards, the rest of the cardiac symptoms including what my doctor called presyncopic events began to appear. He refered me to a cardiologist, but thanks to a 10 day long migraine, I had to reschedule, and I won't see him until July.

My symptoms continued to worsen; shortness of breath with any physical activity including walking, the palpitations became more severe and frequent, and inevitably I wound up in the ER when I couldn't get my breath back and my heart was both racing and skipping beats.

They ran tests, did an EKG, gave me fluids, etc. EKG showed a probable enlarged atrium, well that's good news. But that aside everything was normal.

Followed up with my GP and he put me on extended release Inderal, which effectively doubled my dose as well. Since then, the palpitations have lessened significantly, but I still get extremely weak and short of breath when I'm standing, I still get light headed when I stand up from a seated or lying position, and changing from sitting to lying down or vice versa still makes my heart palpitate a little and winds me a bit.

All in all, I don't know if this is POTS or the Chiari (which my doctor thinks is a probability). I don't know what sort of testing is even done for POTS and how it's diagnosed.

If anyone has any information, educated opinions, insight, etc, please feel free to comment. I'm at a loss at this point.

An Update and Annoucement

Well, life has had its ups and downs lately; fibro flares, bipolar mood swings, you name it, life has thrown it at me. It's said God never gives you more than you can handle... Sometimes I do so wish He didn't trust me quite so much! LOL!

Overall my pain level has been higher than usual but it's the turn of the seasons, and with the weird weather in the Midwest, and the stress - emotional and otherwise - in my life lately, that's understandable. I go for my first counseling appointment Monday; I'm pretty nervous about it honestly, but I know I need it. I need an unbiased third party to be able to talk to about everything, and I know I have a lot of unresolved emotional issues that I need to talk about.

As to my announcement, well, there are a few. First. I won my disability claim! I've been receiving checks since March and am anxiously awaiting my first back pay check. I'm not thrilled with social security's back pay system; it's three payments, one every six months, then my SSD payments start. It's basically going to take three years for me to get my full back pay. Annoying? Very.

Second announcement: You're going to start seeing book reviews on here! I joined a site called Blogging for Books - which is just what it sounds like; you sign up, select what sorts of books you like, then pick a free book to receive in exchange for publishing an honest blog review on their website and your own blog. I'm looking forward to it! :D my first book will be here in 10-14 days and once I've read it I'll have my review up!

So. Stay tuned! I'll be picking not only health related items (This one deals with depression) but religion, fiction, non-fiction, whatever strikes my fancy and sounds like something I'd enjoy and be able to write a sound review on :) looking forward to reviewing for them - and for you all.

Check them out at bloggingforbooks.com if you have a blog (I don't know if tumblr counts, but goodreads, Facebook, and Twitter don't) and can do a good three paragraphs of an honest review plus a disclaimer in return for a free book or ebook! They even cover shipping!!!!

Handicap Placards and Spaces

Handicap Placards and Spaces 

Handicap placards. Not all spoonies have them, but many - likely a majority - do. But with that placard, that handy little blue parking space that becomes so crucially important to us especially on harder days, comes a lot of myths and expectations from the able bodied world.

People expect those with handicapped placards to look a certain way, or perhaps walk a certain way. They expect them to be in a wheelchair, or have a cane or crutches, or to use a walker, or perhaps to limp or waddle. They expect them more often than not to be older. So when they're confronted with someone who may be younger and who may do none of these things, they instantly assume that you're using a parent or grandparent's placard illegally.

I've seen links circulating on places like Twitter and Facebook about people that have had notes left on their car or people that have been told off for parking in a handicap spot with their own placard because this person didn't fit that angry person's expectation of a disabled individual.

So, if you're an able-bodied individual reading this post, I urge you to read on with your eyes and mind wide open. Because this is something you really need to understand.

There are many, many people out there with handicap placards that appear perfectly healthy. They don't often use assistance devices, though sometimes they may. They don't always limp, though again, sometimes, they may. From the outside, they may look to be just fine and dandy, perfectly able-bodied, and they may seem like they have absolutely no business having that handicap placard that's hanging off of their mirror.

However, that does not mean they are using someone else's placard. That does not mean that this person is an able-bodied individual. That does not mean that they should park in an abled space. For people such as myself, those extra feet between a disabled and abled space can mean the difference between getting everything on a shopping list and skipping the majority and getting only the bare necessities because of the extra walking. This isn't hyperbole. Those few feet make that much of a difference. We don't park in those spots because we're lazy. We don't park there because it's fun, or because we want attention. We park there because we have to. Because we need to. Because if we don't, the next time we go to that store, our shopping list may wind up being twice as long, or we may have to have to ask a friend or family member to go to the store for us to fetch the items we were too exhausted or in too much pain to get for ourselves. Can you imagine, just for a second, what that's like?

"Hello, Jan? I went to the store earlier today, but I just couldn't manage to finish up my list, would you mind picking up six or seven things for me after you get off of work before you go home to your own family/homework/other long list of responsibilities?"

It's never a good feeling to ask someone who you know is tired, themselves, from a long day at work, who has an evening of housework or familial responsibilities or what have you waiting at home for you, to stop at the store that you were just at to get things you couldn't manage to get. You feel so guilty, you feel like you're imposing, you feel like you're being lazy, and you feel so  indebted in ways you know you likely won't get a chance to repay.

It's possible that you may have one or two people that understand what you're going through who would be willing - I say willing there, not necessarily happy, haha - to go that extra mile for you. But for many, that isn't the case. Many spoonies have no choice but to do it all themselves because they are the only people they can count on, because no one else in their circle of friends and in their family gets what they're going through, and nobody understands the fatigue and the pain.

So, in conclusion of that train of thought... those few feet.. can make such an incredible difference in the life of those people. It can make the difference between completing a shopping trip, and feeling like a failure. I know the times I have to call it quits early on a shopping list, I feel like I failed. Like I let my conditions beat me. Logically, I know I shouldn't feel that way, that it's counter-productive. But I do, and I can't help it. I know there are others that feel this way, too.

To those of you out there who are able-bodied and park in handicapped spaces just to be lazy:

Re-read this post. Think it over a minute. Then take a minute to put yourself in the shoes of a spoonie. Think of yourself in a totally exhausted state. I mean ain't-slept-in-days sort of exhausted. Then throw pain in on top of it. Anywhere you please, it's different for everyone. For me, it's my knees, my hips, and my lower back most prominently. Yep, everywhere that sucks the most for walking and standing. My neck and head, too, thanks to my Chiari malformation. So, imagine the tiredness, and then this on top of it:

I have a near constant feeling of aching pressure in the base of my skull that radiates as tension down my neck and into my traps. My back muscles are almost always in knots in spite of being on muscle relaxers, though the lower back is worst for this, and I get random, sharp-shooting pain in my thoracic spine that radiates into my shoulders and arms thanks to degenerative discs, and a firey, electric sort of pain into my behind and down my legs at random called sciatica when my lower back spasms. My hips feel like the sockets of the joints are being ground against with a dull blade every time I take a step, with the occasional stab if I turn funny, and my knees are, no matter how I sit, stand, lay, or walk, in a constant state of aching that never goes away. Prolonged walking and standing makes this aching escalate into a nauseating throbbing, and when I finally sit, it turns into hot pins and needles as the swelling in my knees cuts off circulation from said position change.

This is just on an average day. This isn't even a bad day for me. So I want you to think about that, try to imagine that, and then think about putting someone through that much pain just so you can save yourself a few feet for convenience. For laziness. I save those few feet to save myself from agony, from further exhaustion. I'm not trying to be sanctimonious here, but handicapped spaces are there for the people that NEED them. And we do! There are so, so, SO many people out there worse off than I am! In worse pain, in worse states, that your parking in that spot could potentially even endanger their lives.

So please, able-bodied person, don't park in a handicapped spot, even if you're only going to be a couple of minutes.

Thank you, sincerely, for not parking in a handicap space if you can't legally park there :).

Another Flare or Just Too Much?

Pretty sure I'm hitting a Fibro flare.

The past week or two has been great. I've been getting things done. Cleaning, doing stuff for mom while she's been down the past two months with a pinched nerve in her neck, doing stuff for everyone, kicking ass inside the house, outside of the house, you name it.

The past two days, I've woken up completely exhausted, like I haven't slept at all. Yesterday I had a headache all day for the first time non-cycle related since I reached the top of my topamax titration.

I just can't get moving today. I feel so heavy, like I have weights attached to every part of my body, even my eyelids and face. Even taking a breath is harder than usual. I feel so physically exhausted I don't even have the words to describe it. The pain isn't really there, yet. But if this truly is another flare after my brief remission, I know it will be.

I know I probably overdid it in the two weeks that I was doing so much cleaning and other work. But it was stuff that needed done, and stuff that no one else was physically able to do. Even if it is a flare, though, I can't just stop. With the situation at  home like it is, there's too much that needs done that really is depending on me to do it. Mom still has a pretty long road to recovery ahead of her, I think. Dad's war wounds are bothering him more these days. My brother's own disabilities are really limiting his ability to help out around the house. That's three out of four people eliminated.

They do what they can when they can, sometimes they do more than they should, especially dad these days, but thankfully he's listening when we tell him to stop doing something or to take it easy. I kind of have a household riding on my shoulders at the moment, and it's a heavy load to bear, more so with the level of fatigue I'm feeling right now. I know I need to stop and rest. But I really can't, not a lot anyway. There's too much that needs done. I have to push through, I don't have much of a choice.

The only thing that I know to do now is to pray to God that He will give me the strength I need to get through this and help support my family through these rough times. I don't know why He gave me these disabilities and limitations, why He decided I should have these burdens... I was so very angry with Him for so much of my life because of it. But I'm not anymore. I realize that I can help people because of my problems - I can give them advice on what's worked for me and offer suggestions for things that may help. Whatever His plan is for me, I know my disabilities factor into them somehow. I just have to have faith and perseverance to get through the rough patches - and so far, I always have.

Depression: The Roller Coaster Aspect

A lot of people without depression don't realize that for the majority of us, there's an almost bi-polar aspect to it. No, I'm not saying that it IS bi-polar, or that those with depression are bi-polar, nor am I in any way trivializing or marginalizing bi-polar disorder. I was actually misdiagnosed with bi-polar disorder when a combination of birth control pills and undiagnosed/untreated hypothyroidism had my moods swinging so fast not even I could keep up. (I was very nearly committed at one point during an emotional extreme.)

What I mean by this, is how at one moment, you can be just fine, having a good day, you're happy, laughing, the sun is shining, the birds are chirping, you can hear Louis Armstrong singing in the background. That kind of a good day, you know? Then for no reason, and completely out of the blue, all of that disappears, and your mood goes downhill so fast you'd think it was an avalanche.

 For me, it feels like there's something alive inside of my chest, clawing and chewing away at every good feeling until it leaves an empty hole there. It isn't numb, at least not all the time - there are moments of apathy. But it's just...a very heavy emptiness. Nothing is interesting, nothing is fun, no matter how much it normally is. Sometimes I cry, most times I don't, because it's really not a feeling that, in and of itself, is inherently sad. It's just... a nothing that weighs as much as an elephant, sitting right there in the middle of my chest, and it more often than not evokes this feeling of intense frustration and anger that tends to cause me to lash out at those around me for the stupidest things, though for the most part I've learned how to control that, and my family has learned that, when I'm going through this sort of mental problem, to keep their heads down so to speak.

Then, just as quickly, that low can disappear for the same non-reason as it appeared and it's right back to Louis Armstrong again. Sometimes it can disappear after just a few minutes, sometimes hours, sometimes days, or weeks...months.

The thing is, depression doesn't just present as sadness. It can present as anger, as frustration, as intense apathy, as ennui... there's so many faces that depression wears, and it can change its face so much and so fast, half the time I'm tempted to call it Jaquen H'ghar.

I've developed a lot of coping mechanisms over the years to help deal with these lows. I do something productive, whether it's knitting or sewing, or I clean if I'm physically up to it. If I'm having a really good day, physically, I work out or do something labor intensive. Today, I went out for about two hours and raked leaves. I got about 3/4 of our yard done. I know that doesn't sound like a lot for two hours work, but we live on nearly a half acre, and we have nine oak trees and a birch, as well as a maple in the side yard that often blows leaves into our front yard. Lots. Of. Leaves. I'll eat chocolate and binge-watch my favorite TV shows (usually Supernatural; watching "my boys" battle literal demons and monsters, and their own figurative demons, helps me with my own). But sometimes, those coping mechanisms just don't cut it.

Today has been one of those days. Raking leaves really did help for a couple of hours... but then I started the slide downhill again. Chocolate and Supernatural didn't help, so now I'm watching Doctor Who. I can't really knit, as I'm making myself a scarf, but I'm almost out of one of the yarns I'm using, and I need to get more before I can really do much more work on it. So as it stands, I'm sitting here with that monster clawing at the inside of my chest again and there's nothing that I can do to fend it off.

I could try working out, but after working so hard outside, I'll likely in a fair bit more pain than my normal level tomorrow, any more physical stress and I risk triggering a Fibro Flare that'll last weeks if not months, and right now is not a good time for me to be out of commission. My family needs me physically capable of picking up slack for various reasons, and I can't - no. I WON'T let them down, no matter what.

So, that being the case, I'm at a loss. I have no idea what to do to help pull myself out of this slump, and it seems all I can do is just wait for it to pass. I hope to God it does so soon. I'm fairly certain my antidepressants need increased, and I'll be making an appointment with my doctor or his NP as soon as I can to see to that. I should also, or perhaps, first, get my thyroid levels checked; low thyroid hormones can trigger worsening depression, too.

So, if anyone reading this has depression and experiences the same thing I'm going through... you aren't alone in this. I go through it, and so do many others. We're in this together, even if we're thousands of miles apart. We're fighting this same giant beast that wants to destroy us. I'll always keep fighting, and I have no intentions of letting my story end with 'I gave up.' Some days that's harder than others, but I'm so incredibly fortunate to have the love and support of my wonderful and amazing family and friends behind me. I took them for granted for a long time, but eight months without them made me realize just how lucky I was to have them, and have them so close. I'll never take for granted having them right here with me, fighting the same fight I am - the fight against the pain, the fight against the inner monsters, and the fight against anyone who dare say our pain, be it mental or physical, isn't real, because it damn sure is.

The System Has Made Me A Cynic

Sorry it's been so long since I've posted.

I finally, FINALLY, after over a year now since I first filed with the aid of a lawyer.... actually I think it's been over a year since I was denied and subsequently appealed, received a notification from Social Security that I have a hearing date scheduled for January 20th.

While this is, generally speaking, good news, I'm not exactly jumping for joy.

The truth is, I've been living with this horse hockey my body throws at me for 18 years, and in all of that time, every benefit I've ever received from the government - be it local or federal, and really, the only ones I've ever gotten approved on have been local, being foodstamps and, until more recently given the change in laws here, Medicaid - has been fought for tooth and nail. Food stamps weren't as difficult as Medicaid. Getting Medicaid for the first time, I was denied, and had to appeal with assistance from a group that worked through a hospital to help people such as myself.

Now, with the change in laws here, you can't really get Medicaid if you aren't a mother or aren't receiving Social Security benefits.

I've been trying for years now, literally, years, to get Social Security. I've applied and appealed, and applied and appealed again. Every time, I was denied. Every time, they say I'm healthy enough to work. They don't live in this body, they don't live with my brain. How the hell can they know I can work based off of a 10 minute physical exam from a doctor that has no rapport with me, and whatever they decide is worth listening to in medical records, which apparently is nothing at all?

The system here really isn't at all fair. I would honestly love to work. I really would. But it's just not a realistic undertaking. Employers don't want someone who will be erratic in their availability, and who has so many doctor-ordered restrictions.

The appeal hearing will be different in the sense that I will be able to speak for myself, I'll be able to offer my side of the story, they'll have a face to go with all of that paperwork, and they can get more insight other than just what's written down. In spite of that though... I just can't muster any real optimism. I can't.

Those of you reading this that know me well, you know how big of a deal that is. I'm forever the optimist, the positive one, the  everything happens for a reason type. But this? I just feel like it's a higher step to stand on before I get knocked down to the bottom of the stairwell again.

You're probably wondering why I even bothered trying if I don't think I'm going to win. The truth is... I'm trying because I have to. Because I don't really have any other choice or any other options available to me at this point in time. I have to keep fighting, even if it's a futile battle, and hope that maybe sometime, somewhere down the line, someone will hear my voice over the din and actually listen and understand.

Who knows, that may even be this judge that I see in January. I doubt it. But, maybe.

The thing is, all of these denials, all of these hoops I've had to jump through for every little scrap the government wants to give me... it's sucked the positivity and optimism out of me when it comes to anything related to things like that. It's just... I'm going 'well, I may as well do it, I've got nothing better to do, right?'

I know that sort of attitude won't help. I know that sort of energy won't help. But I literally cannot help it. I try to have faith that it'll work out, and I pray constantly that it will, but there's only so many times I can get kicked in the teeth before I start putting my hands up before the boot can reach me.