Monday, April 8, 2019

Opioid Steering Committee letter 12/2017

This is the letter I wrote to the Opioid Steering Committee December 27, 2017

((((Please note I used part of a form letter and changed/added parts for my story.... There are TOO MANY of US BEING discriminated against. We should be covered under the ADA but it seems it does not matter. It is honestly out right discrimination. We all need to find our inner Rosa Parks and take back OUR SEAT!))))

To the FDA Opioid Policy Steering Committee

I am writing to add my comments to those of many other people in agony, concerning the mission of the FDA Opioid Policy Steering Committee. Because I have difficulty organizing my ideas, I have borrowed part of this from a letter published in social media. However everything written below is true to the best of my knowledge.
I have been a chronic pain patient for many years, as I was hit by a drunk driver in 1999, along with a spinal birth defect, resulting in 8 back and neck surgeries to date. I will require more as I age because my surgeries are just for stabilization and to prevent paralysis. I also have recurring lyme, lupus, RSD, as well as rheumatoid arthritis. I cannot take morphine, as it causes a drastic drop in blood pressure that nearly killed me on 3 occasions, until the anesthesia group determined the cause.

My doctors have tried me on many therapies. The only ones that have worked have included prescription opioid medications. I did not seek out these medications. I take only as much as needed to partially control my pain, and only under my doctor’s direction. I refused ALL narcotics until uncontrolled pain caused a TIA and I was sent to a pain management specialist who assured me he would follow my care and use closely and I would not become an addict. Now I sit in fear that once the regulations continue to pressure all Drs and pharmacies to the point no one will have access to these medications. Before you tell me that won't happen, I might mention that I no longer can get my medications through my local pharmacies, they are all too scared to take on any pain patients, I have to spend 100's of extra dollars on top of the cost of my medications to send to my husbands work approved mail order pharmacy and wait/pray my medications don't get lost or that they are delivered on time. Yes, I was forced to go through a week long withdrawal when my 30 day prescription that I stretched 40 days could not be filled ANYWHERE.

Because of the prevailing hostile regulatory environment, my doctor no longer feels safe in prescribing opioids to anyone, including me. He fears being maliciously persecuted by the DEA or State authorities and losing his license, thus his livelihood.

I have personally been harmed by denial of appropriate and effective opioid medications. I have never failed a urine test. I am not a “drug seeker”. I do not “want” to take opioids, even though nothing else works for me. I am a person in pain whose quality of life is being destroyed by government policy.

I have been told that because of these regulations, my specialists may have no choice but to stop prescribing opioid medications. From experience, I know that further lowering my dose level, or worse, will destroy my life and disable me from the few activities I am now able to do. I will once again become bed-ridden, rely on the use of a motorized wheelchair, cane, walker, and other aides just to perform daily activities.

The most important factor that is driving me further into disability is the 2016, 2017, and now coming 2018 CDC opioid prescription standards. Though written as voluntary and directed to general practitioners, Congress made them mandatory in December 2015 – three full months before publication. They are now widely regarded as mandatory standards by legislatures in several States.

There is widespread consensus among doctors that the CDC standards are fatally flawed: unfairly and unscientifically biased against opioid therapy, unsupported by medical evidence, inaccurate and grossly incomplete. Failure to acknowledge natural differences in opioid metabolism between individuals makes the standards actively dangerous to patient health and function. These standards must be immediately withdrawn for a major rewrite to correct their many errors. Patients or their advocates should be voting members among the writers group.

There is no one-size-fits-all pain patient, and there can be no one-size-fits-all opioid treatment standard for either dose or duration versus diagnosis. Imposing arbitrary limits on the number of pills prescribed, or allowing pharmacists to audit prescriptions will only drive more doctors out of practice and more patients into agony. It is time to remove government from doctor-patient relationships. You don’t know what you’re doing and people like me are suffering from your incompetence.

Most ironically of all, the well-intended actions of government in restricting opioid prescriptions are having exactly the opposite effects. Deaths from street heroin and fentanyl have skyrocketed even as the number of prescriptions has fallen in the past five years. Arguably, prescriptions made by doctors to real pain patients are not now and have never been a major factor in the death toll. Public policy on addiction must be redirected toward prevention in kids and harm reduction in adults. Restriction of pain relief contributes nothing to either goal.

We are not disposable

People, I know many of you see the headlines "opioid crisis", you see the stories of crying families who have lost loved ones to addiction. I have too! I lost many close to me from addiction but I  am also a chronic pain patient. I rely on those "awful and deadly" opioids to be able to walk. I did not wake up one day and decide to be on life long medications. To have EXPENSIVE drug screens, monthly visits with Drs (even though I LOVE my Drs deeply.) They are part of a wonderful crusade to help legitimate patients receive adequate care. They also have been forced to taper patients and taper patients more, all because some "guidelines" that law efforcement has decided to use to scare Drs, pharmacies, and patients with.  I have spent the last 3 years cutting myself back on my own, voluntarily. Altogether stopping certain medications because their name is pure taboo... I mean what is your 1st thought when you hear the word fentanyl? Well for me it used to be this tiny thin patch I wore 3 days at a time. For almost 10 years I traveled the country, I worked part time jobs outside of the home, I raised 3 AMAZING and responsible kids, I volunteered at their schools, I was an energetic and happy mom, I substituted for some great schools and loved it, I even went back to college. I watched my 3 grands born. 1 of which I patiently waited days to arrive only for him to wait till the absolute last minute and caught the red eye from California to spend Christmas with our East Coast kids. Does that sound like a strung out druggie?
   Not 1 person can even begin to say I have ever had the life of a true drug addict. But I am now utterly TERRIFIED of seeing new Drs or going to an ER or Urgent care. In my experience I have been treated like a drugged out dr shopper even though I have ALWAYS followed the rules and listed every single medication, my Drs, and in big bold print I note I am "currently under a pain management contract, not seeking anything but care for.... And list my needs from these Specialists" I have been loudly told I would not get ANY narcotics from them and if/when my pain clinic was shutdown not to come begging for medications from them... I mean so loud that as I left in tears I knew every staff member heard her screaming at me, the patients in the waiting room couldnt even make eye contact with me....
    The reason for my visit that day? Well I had no primary care Dr and felt I needed someone closer in case I were to get sick, also someone to handle yearly screenings and such. Another time I literally had the flu and was in an urgent care office and treated so poorly.
   Now just the idea of seeing a new Dr sends me into a panic.  I have been dealing with a ripped quad but the dr I saw told me physical therapy was all he could offer me, this after Kris, xrays, and his own in office ultrasound clearly showing the tears and damage, also a bakers cyst and issue with the way my knee could not fully straighten, his exact words "I guess at this point you will just have to fire me, I can't help you". So now the 2 inch tear is now at about 4 inches, the knee locks and somedays I can't even stand to put weight on it, but this is my life.
  I have Lupus, chronic recurring Lyme, and a host of other issues, along with new issues piling on with time.  I try not to cry, I try not to complain.... I reach for any and all treatments and keep an open mind about things. What hurts the most is knowing that even though I am now on less than 30% of the medications I was on before "the opioid crisis"  I am also living at less than 50% of the life I once had. I can't be the Gigi that goes and gets her grands for sleepovers and weekends of fun, I can't be the wife that approaches every day with excitement. Thankfully my husband is a very low key, laid back, excellent care giver. He never resents my life or the fact I am not the wife he married. He only gets frustrated that I won't fight for my right to a decent life with no suffering, but see I am and have been fighting. I am part of many groups trying to show how fighting the war on drugs has left a large group of people suffering, so many suffering to the point of suicide. The numbers are staggering, the statistcs no one talks about. The ultimate cruel end to these people suffering to the point of suicide????? They are now counted as "an opioid related death". Yeah, disgusting.  Statistics skewed to further the war on an entire group of people who are starting to believe no one hears them, no one cares, that we are disposable....
   But I am sorry, I didn't choose for a drugged out driver to run a red light and alter my life forever.
     I am NOT disposable!!
         My mom is NOT disposable!
             No chronic pain patient is disposable!

Beyond Angry

Below is the contents of a recent Facebook post regarding a 3 month long back and forth trying to obtain my senior mom's medications... Now note... Most of them are NOT controlled class 2 meds.. But they are refusing to fill any of them...

Okay Caremark. @cvshealth   ... Aka care NOT. You have met your match. Try ALL you want but I will NOT stop advocating for my mom, also I know WAY more about pain management, legislation, and laws... Must be nice to have patients PAY for their coverage and you have the CHOICE to decide whether you are comfortable filling prescriptions... I 150% understand why certain safeguards and guidelines are in place and support the majority of them but to try to confuse a patient with all your rules, that patient follow everything you have asked and STILL not help her... Then misrepresent her. I am not going to just go away quietly... So get ready for hearing from me every way I can reach out.  I will have am army of support behind me... Make NO mistake.  #cppwariors #wearepeopletoo #disgracedanddisgusted #sickofseeingthesestories #nowmyfamilyisoneofthesestories #mostlydailythoughts #spoonies #advocates #bluecrossofalabama #patientadvocateswhereareyou #standup #ladynazh #lordnazh #redlawhorn #painnewsnetwork #katesnow

Saturday, April 6, 2019

We are many, we are trying

So important to hear if you know anyone (yes, you do) struggling with chronic illness. Many are for the most part invisible and sonetines the symptoms are the disease. ( I know I will leave tons of groups out but here are a few). Until the body turns on itself, destroys tissues and muscles or vision and feeling. POTS, Lupus, CP, Failed surgery syndromes, Fibro, SLE, chronic debilitating migraines, persistent vertigo, recurrent Lyme disease, Rheumatoid Arthritis, Multiple Sclerosis, Parkinson's, ALS, diabeties, PCOS, COPD, Bell's palsey, Anxiety, and so many more. The list is staggering and sobering.  The chances of you or someone you know, battling a lifetime of illness, sometimes even unexplained illness, is,so much bigger than you can even imagine. So when someone you know says they are sick or not feeling well "again" resist the urge to sigh and roll your eyes, learn/have compassion or just remove yourself.  Chronically ill spend so much time explaining symptoms to Drs, specialists, getting tests, advocating for themselves, oh yeah, and now days fighting with pharmacies... They do not need your negativity or doubt...

It just does not matter anymore

There are more and more articles and news reports attempting to advocate for us. It hasn't seemed to help. Things keep getting more challenging. Now insurance companies refuse to cover the medications, pharmacies refuse to fill valid prescriptions. They are be allowed to embarrass n harass and discriminate, legally. They are wearing down patients who no longer have the strength or energy to keep fighting. Many fear rocking the boat with their pharmacies and not being able to fill even a small amount of needed pain medications...


 Recently played a few games on Caldera (warzone) and then... Lots of luck in this one, but satisfying