I know I’ve been promising an update blog for ages and haven’t been following through. Sorry about that; my energy levels have been fluctuating and most days laying around binge watching stuff or gaming is about all I have any real desire for.
It’s been a long while since I’ve gone into any detail about what’s been going on with me, I mean I’ll do posts here and there about this appointment or this problem, but nothing really in depth. Part of that was just plain laziness, and part of it was out of a desire to not jinx myself.
Some months ago, I had Supartz (hyaluronnic acid) injection series in both of my knees - one shot a week for three weeks per knee. This has actually greatly improved my issues with my knees, especially considering the rather disastrous results of the corticosteroid injections that were tried prior that made the pain so much worse. My pain level in my knees has dissipated, initially by about 70% during the peak of its efficacy, but now as time has passed and weather has gotten wonky, I’d rate it as about a 50% pain relief which is still nothing to sneeze at by any means! Also, for some reason, this has also stopped my knees from subluxing and dislocating, which is a very, very welcome, if unexpected, result. It’s been a great change in my life to have my knees maxing out at a 6 on my knee pain scale at their absolute worst when prior to the Supartz, they were living there as their normal.
Another significant improvement is my migraines. My pain doctor had, back in August, given me an epidural. I hadn’t had another severe migraine until one last month, and the minor migraines I did get were very short lasting and more than tolerable compared to the 10 days of hell they were. I have also completely weaned off of the Topamax thanks to the epidural. I am going to be having another one soon as a result of the migraine last month - he wants to ensure that I don’t have more significant flares - and I never thought looking forward to needles being stuck in my neck would be a thing.
As of May 20th, I have been a non smoker; I’m more than proud of this particular achievement as it’s an addiction I had had since the age of 16, and really was my only addiction.
(Also, Turk and JD, my gerbils, are both in good health, if now living in separate habitats due to fighting.)
Now for the not-so-great. The degenerative discs in my thoracic spine have been giving me hell, leading to severe muscle spasms in my upper back, at times outright debilitating and nauseating pain, and pain that, oddly enough, radiates into my arms - this is usually a cervical spine problem, not thoracic, but as my pain doc says, my body can’t ever make anything easy. This has thrown the brakes on the next step of rehabilitation for my hips, knees and lumbar spine as I was going to go for aqua therapy, but doc now wants a new MRI of my t-spine as the most recent was 2 or 3 years ago, and we’ll see what we’ll see from there.
I’ve also been having a lot of sinus headaches due to the Sjogren’s causing chronic sinusitis and sinus infections, so that’s always fun, and as a result my eyes have been giving me problems as well - though I’m not 100% certain it’s all due to my sinuses, and will be getting another eye exam soon to ensure all is well with my eyes, as autoimmunes as well as Ehlers-Danlos like to attack organs like the eyes and ears.
My energy level has been in the toilet, and I’ve been doing my best to rectify that, but with little result. I have been eating healthier - well, as much as one can eating microwave meals (healthy choice steamers mostly) - but my appetite is fickle when I’m so tired. I honestly would love to get more raw foods and yummy vegetables into my diet, but prepping and cooking as a spoonie with a fatigue flare is laughable. I’m just glad flash freezing works well and I know that the vegetables in my steamers are nutritious. So I have that going for me.
All in all, the next few months is going to be a long process of diagnostic testing and treatment experimentation, followed by the long road of rehab, but I’m hoping I’ll eventually achieve a more pain-free life; something I wouldn’t have dared hope for not long ago, but my pain doc and the ideas and solutions he has come up with have given me that hope again. It’s kinda nice.
~Jade
Showing posts with label disability. Show all posts
Showing posts with label disability. Show all posts
Monday, July 2, 2018
Thursday, November 16, 2017
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.
Wednesday, August 17, 2016
Romantic Relationships as a Spoonie (And Why I'm Jaded)
So, the About Me thing is tiny. Teeeeny really. There wasn't enough room for me to really go into details about being a Spoonie (A person with one or more chronic illnesses) or anything like that... And then I discovered the blog area and went, "Ah ha!"
The truth is, I'm mostly on here to find friends. I've become jaded to the aspiration of finding a husband and ever having children though this has been a long-held dream. Why? Because... I'm a Spoonie. Now, before you jump in and say anything (Can you comment? I don't know, but, just the same, keep reading) allow me to explain.
I've been living with my chronic illnesses and daily chronic pain since I was ten years old; I turn 30 in December. I can count on one hand the number of romantic relationships I've been in, and only two of them became serious; I was engaged twice, and married once. That marriage lasted eight months before we separated and then legally divorced. Now, this man I married, whom we shall call Joe, no, no, I like that name... Um. Jack. Jack works, that's nice and common. I had known Jack for YEARS. We gamed together all the time, we Skyped, we talked about real life, we stayed up late laughing our asses off at the stupid stuff we came up with or that happened in game and in real life, some of which in spite of my bitter feelings toward him still make me smile and laugh to this day.
Jack knew everything about me, and about my illnesses. He knew there were days I literally could not get out of bed without help, even to walk the six or so feet from my own door to the bathroom door where the counter would be available to support me. Tack on the distance from where my bed was...oh, about nine feet in all. My mother, who at the time was in her early 60s, had to help me out of the bed and to the bathroom due to the joint and muscle pain I have. I had to miss doctor appointments because I was too sick to go in, if that isn't ironic, I don't know what is. I had and still have migraines that can last for up to ten days at a time, where the tiniest sound or the most dim light is excruciatingly painful.
"What the hell is wrong with you?" You may ask... Well, you can google these yourself, buuuuut. I have Fibromyalgia, I have hypermobile type Ehlers-Danlos syndrome, I have a type 1 Arnold-Chiari malformation, I have chronic fatigue syndrome, have degenerative disc disease, I have cervical ridiculopathy, I have arthritis in my knees, and most likely in my hips, I have sciatica, I have depression, I have anxiety, I have bipolar affective disorder, I have chronic insomnia, I have irritable bowel...well, to be honest, I have a 3" thick file of medical records. That's what I have. I have too many acronyms. That's what I have. I also have some unknown heart condition that I'm currently in testing for; it isn't beating right - early A-fib, for those of you who know what that is. What they're going to do about it depends on the results of the test. The heart thing is new. The rest? Was already there.
He knew.
Now, the thing about chronic illnesses and chronic pain is the fact that one day, I can be bedridden, needing my mom or crutches to get to the bathroom and back to my bed, and by the time I get back from that, I'm so exhausted I have to take a nap! I'm not even joking. But them, the very next day, I'm just fine and able to conquer the world and do anything a normal person does. It follows no rhyme or reason, no schedule. Sometimes, I can have weeks or months of remission before the chronic pain train runs me over again.
The first few months we were married, I was in a remission. I think it was in part due to the climate change - I moved from Indiana to Arizona. But then I got sick with a nasty strep infection, and wham. Everything snowballed. I couldn't be the perfect maid/housewife anymore, leaving the house spotless and having dinner ready when he got home from his desk job so he could sit and play games and smoke pot all evening. I was also dealing with a surge of depression, mostly, I think, from being so horribly homesick. I've always been very close with my family, and they were across the country. So I began to do what I always do when I'm in extreme physical and/or emotional pain. I began to recluse. That is my fault, my error, in this whole mess. I shut myself in our bedroom, hiding away from everything, suffering my pain in silence. I told him about it, when he asked, but in spite of his insurance we could magically never afford a doctor, yet we always had money for him to get takeout or him to buy pot. Amazing.
I wasn't aware that we were actually having -marital- problems. I wasn't. He never said anything. The house was going to hell in a hand basket because he and our roommate apparently had no idea how to wash a dish or clean up after themselves, so it fell to me to clean the literally molding dishes while I was in tears from pain because neither one of them could bother to. I did that once, and I couldn't do it again. Neither one of them could do the grocery shopping, either. Jack bugged me about our being low on groceries, so I suggested he go, but he refused to go without me. I think he simply thought I was being lazy.
Food supplies dwindled, and eventually, while Jack and our roommate were getting takeout because he picked our roommate up from work on his way home (rarely if ever thinking to get anything for me) I subsisted on canned mixed vegetables and peanut butter sandwiches when the ramen finally ran out. Jack meanwhile commented to my mother on the phone, I later found out, that I was looking great because I had even lost weight. Yeah, jackass, I was starving! I also later found out from my mother and eldest brother that he was talking to them, and his family, about our marital problems but not to me; he was talking to everyone BUT me, I had no idea anything was wrong, at all. He was a very non-confrontational individual, but that was ridiculous.
On the night we decided to divorce, my mother called me to warn me he had filed papers and was planning to just spring it on me out of nowhere. MY MOM KNEW I WAS GETTING A DIVORCE BEFORE I DID! How screwed is that?
But ... digressing... All of that has made me so horribly, horribly jaded about getting into a romantic relationship as a Spoonie. Yes, I am an excellent housewife when I have the ability; I will keep the house spotless and I will cook you a kickass dinner that will be ready or nearly ready the second you walk in the house from work, because I see that as my contribution as I can't work. But when I don't have the ability... That's where the problems lie. When I don't have the energy to even take care of MYSELF. How am I supposed to take care of anything else? How am I suppose to expect there's anyone out there... Anyone at all... Willing to deal with that shit? With the regular doctor visits, with the necessary regular testing, with the unpredictable nature of my illnesses.... I can barely deal with it, so... How can I expect,or even ask, anyone else to?
I've been told I'm a great person, I'm kind, I'm generous, I'm loving and compassionate, and all that. That may be true, but... I'm also honest. Especially with myself. Sometimes, maybe a little too much. I honestly can't see someone wanting to deal with this, no matter what they think of me, no matter how great of a person I may or may not be.... And why would I want them to when I know they could be happier and have a less complicated life with someone else? And...truthfully... How could I have children knowing I might pass this hell onto them?
Maybe this is the depression talking. Or maybe.... For once... I'm just being real with myself and telling myself to just... Give it up. Hang up the dream and just... I don't know. Become an old cat lady. Or something.
The truth is, I'm mostly on here to find friends. I've become jaded to the aspiration of finding a husband and ever having children though this has been a long-held dream. Why? Because... I'm a Spoonie. Now, before you jump in and say anything (Can you comment? I don't know, but, just the same, keep reading) allow me to explain.
I've been living with my chronic illnesses and daily chronic pain since I was ten years old; I turn 30 in December. I can count on one hand the number of romantic relationships I've been in, and only two of them became serious; I was engaged twice, and married once. That marriage lasted eight months before we separated and then legally divorced. Now, this man I married, whom we shall call Joe, no, no, I like that name... Um. Jack. Jack works, that's nice and common. I had known Jack for YEARS. We gamed together all the time, we Skyped, we talked about real life, we stayed up late laughing our asses off at the stupid stuff we came up with or that happened in game and in real life, some of which in spite of my bitter feelings toward him still make me smile and laugh to this day.
Jack knew everything about me, and about my illnesses. He knew there were days I literally could not get out of bed without help, even to walk the six or so feet from my own door to the bathroom door where the counter would be available to support me. Tack on the distance from where my bed was...oh, about nine feet in all. My mother, who at the time was in her early 60s, had to help me out of the bed and to the bathroom due to the joint and muscle pain I have. I had to miss doctor appointments because I was too sick to go in, if that isn't ironic, I don't know what is. I had and still have migraines that can last for up to ten days at a time, where the tiniest sound or the most dim light is excruciatingly painful.
"What the hell is wrong with you?" You may ask... Well, you can google these yourself, buuuuut. I have Fibromyalgia, I have hypermobile type Ehlers-Danlos syndrome, I have a type 1 Arnold-Chiari malformation, I have chronic fatigue syndrome, have degenerative disc disease, I have cervical ridiculopathy, I have arthritis in my knees, and most likely in my hips, I have sciatica, I have depression, I have anxiety, I have bipolar affective disorder, I have chronic insomnia, I have irritable bowel...well, to be honest, I have a 3" thick file of medical records. That's what I have. I have too many acronyms. That's what I have. I also have some unknown heart condition that I'm currently in testing for; it isn't beating right - early A-fib, for those of you who know what that is. What they're going to do about it depends on the results of the test. The heart thing is new. The rest? Was already there.
He knew.
Now, the thing about chronic illnesses and chronic pain is the fact that one day, I can be bedridden, needing my mom or crutches to get to the bathroom and back to my bed, and by the time I get back from that, I'm so exhausted I have to take a nap! I'm not even joking. But them, the very next day, I'm just fine and able to conquer the world and do anything a normal person does. It follows no rhyme or reason, no schedule. Sometimes, I can have weeks or months of remission before the chronic pain train runs me over again.
The first few months we were married, I was in a remission. I think it was in part due to the climate change - I moved from Indiana to Arizona. But then I got sick with a nasty strep infection, and wham. Everything snowballed. I couldn't be the perfect maid/housewife anymore, leaving the house spotless and having dinner ready when he got home from his desk job so he could sit and play games and smoke pot all evening. I was also dealing with a surge of depression, mostly, I think, from being so horribly homesick. I've always been very close with my family, and they were across the country. So I began to do what I always do when I'm in extreme physical and/or emotional pain. I began to recluse. That is my fault, my error, in this whole mess. I shut myself in our bedroom, hiding away from everything, suffering my pain in silence. I told him about it, when he asked, but in spite of his insurance we could magically never afford a doctor, yet we always had money for him to get takeout or him to buy pot. Amazing.
I wasn't aware that we were actually having -marital- problems. I wasn't. He never said anything. The house was going to hell in a hand basket because he and our roommate apparently had no idea how to wash a dish or clean up after themselves, so it fell to me to clean the literally molding dishes while I was in tears from pain because neither one of them could bother to. I did that once, and I couldn't do it again. Neither one of them could do the grocery shopping, either. Jack bugged me about our being low on groceries, so I suggested he go, but he refused to go without me. I think he simply thought I was being lazy.
Food supplies dwindled, and eventually, while Jack and our roommate were getting takeout because he picked our roommate up from work on his way home (rarely if ever thinking to get anything for me) I subsisted on canned mixed vegetables and peanut butter sandwiches when the ramen finally ran out. Jack meanwhile commented to my mother on the phone, I later found out, that I was looking great because I had even lost weight. Yeah, jackass, I was starving! I also later found out from my mother and eldest brother that he was talking to them, and his family, about our marital problems but not to me; he was talking to everyone BUT me, I had no idea anything was wrong, at all. He was a very non-confrontational individual, but that was ridiculous.
On the night we decided to divorce, my mother called me to warn me he had filed papers and was planning to just spring it on me out of nowhere. MY MOM KNEW I WAS GETTING A DIVORCE BEFORE I DID! How screwed is that?
But ... digressing... All of that has made me so horribly, horribly jaded about getting into a romantic relationship as a Spoonie. Yes, I am an excellent housewife when I have the ability; I will keep the house spotless and I will cook you a kickass dinner that will be ready or nearly ready the second you walk in the house from work, because I see that as my contribution as I can't work. But when I don't have the ability... That's where the problems lie. When I don't have the energy to even take care of MYSELF. How am I supposed to take care of anything else? How am I suppose to expect there's anyone out there... Anyone at all... Willing to deal with that shit? With the regular doctor visits, with the necessary regular testing, with the unpredictable nature of my illnesses.... I can barely deal with it, so... How can I expect,or even ask, anyone else to?
I've been told I'm a great person, I'm kind, I'm generous, I'm loving and compassionate, and all that. That may be true, but... I'm also honest. Especially with myself. Sometimes, maybe a little too much. I honestly can't see someone wanting to deal with this, no matter what they think of me, no matter how great of a person I may or may not be.... And why would I want them to when I know they could be happier and have a less complicated life with someone else? And...truthfully... How could I have children knowing I might pass this hell onto them?
Maybe this is the depression talking. Or maybe.... For once... I'm just being real with myself and telling myself to just... Give it up. Hang up the dream and just... I don't know. Become an old cat lady. Or something.
Saturday, June 25, 2016
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.
"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.
Saturday, May 28, 2016
(Language warning) Ranting, Ranting, and more Ranting
I know it's been like, forever, since I've posted anything but a book review. I'm sorry for that, and I'm rectifying that now.
In truth, aside from being utterly exhausted 99% of the time for no damned good reason, which, I'm not sure if it's the chronic fatigue, my heart, or something else entirely, I'm just fucking tired of everything.
Have you guys noticed how much bullshit is everywhere lately? Just absolutely everywhere. People are getting their panties in a bunch over every tiny little thing because the government and the media want them to, so they do! The more the media focuses attention on shit, the more everyone seems to care, and the real issues that actually affect the world as a whole slip by the wayside.
We have the whole gender issues thing - you know, we've been using bathrooms with transgender individuals for decades and nobody fucking knew it, but now that the government and media made a big deal out of it, IT'S SUDDENLY A HUGE DEAL. I've had female, CIS friends verbally accosted by people in or outside of women's restrooms just because they don't fit some other woman's idea of what a woman should "look like."
People just want to use the damn bathroom. "What about the perverts?!" You ask. Well, what about the ones that were already there? The men in the men's room that would molest little boys, or the women - or hiding men - in women's rooms that would molest little girls or women. They've always been there, too. The laws aren't going to change that fact. The truth is, most children that get molested, statistically, are molested by someone they already know - a friend, a family member, a teacher, a church leader, etc. Pay attention to your damn kids, and don't send them to the bathroom alone. Don't worry about who's taking a piss beside you, worry about your own business.
And meanwhile, what about the homeless kids? The starving ones? The ones getting abused in their own homes? I don't hear you speaking up much about them. Hypocrites.
Speak your damn mind. You don't give a shit about the bathroom, you're using it as a mask for prejudice.
Anyway. Aside from that bullshit, there's the constant assaults on religions, on race, hell, even on disabled people - some SJWs are now saying that white disabled people are more privileged and powerful than POC disabled people. Uh, WHAT? Last I checked, disabled is disabled. There's no damn privilege when it comes to fucking disability.
I'm just tired of all of the petty first world problem bullshit. I really am. And honestly, that is exactly what it is. It's all first world problems. The world is going to hell in a handbasket, between wars, water shortages, poverty, climate shifts, etc. But everyone in the first world nations can't see a damn inch from in front of their face, and it's pathetic.
There's too much hate, too many people looking to make problems where there aren't any. Too many people wanting to tear each other apart because APPARENTLY that's more fun than finding common ground and coming together instead.
I used to wonder how the hell Trump managed to get as much support as he did. I don't any more. It's painfully obvious. Hate and prejudice are allowed to roam unchecked and nobody gives a second thought to setting it aside and looking for unity. Well, people, you reap what you sow. It will sicken me if he becomes our next president, but it honestly won't surprise me.
Saturday, April 16, 2016
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!!!!
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