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
Monday, July 2, 2018
Sunday, February 11, 2018
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.
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.
Subscribe to:
Posts (Atom)