Another Open Letter to California’s Governor from a Chronic Pain Patient

Another Open Letter to California’s Governor from a Chronic Pain Patient

Dear Governor Newsom,

Rarely do I talk about my own struggles with pain, but today I appeal to you on a very human and personal level. I sustained a serious C-spine injury in 2010 that changed my life forever. It left me facing living a life filled with pain every day. In addition, I have Myalgic Encephalomyelitis, as well as having to battle other serious health issues over the years. It’s been a long and painful 6 years since I had the medicines that allowed me some quality of life.

As a result of not having access to the medicines that allowed me to mediate my pain, my health has deteriorated significantly as I can no longer engage in the normal daily activities that I was able to accomplish when my pain was managed. I can no longer travel, and some days even normal self-care routines have become impossible. The reality of living in pain is insidious, it wears on the body and mind; and make no mistake, no one is immune to the possibility of facing this scenario as it takes only seconds to receive a tragic diagnosis or be involved in a devastating accident, either of which can change your whole life forever.

Not only has my own life been destroyed, my family’s life has been changed forever too. I am no longer a part of their lives for most milestones or even able to go grocery shopping with my spouse. Birthdays, graduations, social gatherings, all are primarily lived through seeing photos now which my friends and family share online. I’ve tried to push through my pain and illness only to pay for weeks, sometimes months, for trying; that is not living, it’s merely existing. The restrictions on certain prescribed pain medicines that were based on misapplied CDC guidelines has left those of us who were once able to function and engage in life, housebound and isolated.

Tragically, more and more are now taking their own lives or are dying due to pain induced complications.

Arianne Grand-Gassaway

I am now 51 and take NSAIDs every day at maximum doses, which is like trying to put out a wildfire with a squirt gun. NSAIDs do however put my health at serious risk as far as the impact on my kidney function, GI bleeds, and even sudden cardiac arrest. The truth is uncontrolled pain wreaks havoc on EVERY body system. It can lead to immune dysregulation, cardiovascular crisis, endocrine dysfunction, hypertensive issues that can lead to strokes, and more.

While we in the chronic pain community understand the complex challenges facing our nation regarding addiction, we’ve also seen the data which shows that despite prescribing being at a 15+ year low ODs continue to soar. The current approach to the addiction crisis, which is primarily being done by denying the sick and injured needed medicine, is not working to prevent OD deaths. The voices of those in the addiction community, voices of people with boots on the ground, are not being heard in this regard either. They can lead the way as to how to turn the tide and reduce the OD street deaths that are still spiraling out of control if our leaders will only start listening.

In closing- Opiophobia has pervaded this nation and it is a catastrophe in the making; one that will make the ‘opioid crisis’ pale in comparison. If we do not change course immediately, the only thing that remains to be seen is what the final body count will be when we finally wake to the folly of short sighted, knee jerk reactionary politics, policies, and practices.

We in the pain community await a public acknowledgment that our Representatives have heard our pleas and that our elected leaders in California will take swift action to draft and pass state legislation to protect those in pain from being denied needed medicine, protect doctors from unjust persecution when they practice actual ‘patient centered care’, and put a stop to this madness before any more lives are lost.

Respectfully

Arianne Grand-Gassaway
Californian Constituent and American Citizen

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Arianne Grand-Gassaway describes herself as an old soul living in the mountains of California. In 2010 she sustained a C-spine injury in a tree cutting accident which causes constant, debilitating pain due to spinal stenosis, disc degeneration, and radiculopathy . Arianne also battles with Myalgic Encephalomyelitis, Fibromyalgia, and suffered with Adenomyosis for over 20 years. If you’d like to follow her on Twitter, her handle is @ravensspirit68.

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Allison Greaves

This is so true. What about physicians who LIE about patient struggles for a paycheck from The Standard? Dr Koenig in CA who is a Pain Mgt dr who treats patients in private practice WITH ALL MY SYMPTOMS, takes payments from The Standard to deny claims. It’s unethical. I am in NY and have never met this man. They closed my LTD claim based ion his opinion. I have Chiari Malformation. There is no cure.

Brooke Kucera

This is my life as well. I’m literally dying. I’m 42 and I’ve lost well over 45 pounds. I’m trying to keep a feeding tube away, but I’m losing all hope. My whole body is hell. I’m way too sick right now to comment much, but this was beautifully written and I am saving it. God bless you!!

Yvonne

It is an excellent letter however after what Trini Yeager did when the governor’s office contacted her after the appeals by Red Lawhern and Marilyn Hyder on her behalf, does anyone believe the governor will ever respond to a pain patient’s plea for assistance? I seriously doubt it. It’s disgusting the damage one drug seeker has caused all pain patients in California.

Paul Bartolini

Wow. So well said. You put into words what most of us who suffer from chronic pain are feeling right now. The stupidity from our government must stop and allow us to get pain relief any way we and our doctors choose. It’s humane, it’s moral and for us, we have no alternative but street drugs or suicide. I want to live as best a life I can, please don’t take that away from me along with all the other things I have lost like my job, my marriage, my family and most of all, my self respect.

Claudia Webber

I hope this letter helps! Each of us should write a similar letter to our Legislators who have decided to listen to opinion, NOT FACT! IT IS A HEART BREAKING CRISIS AFFLICTING MILLIONS

Holly

I was basically forced to go on Methadone at a methadone clinic.. I was afraid to go because I had read that if you have chronic pain, they won’t take you. But I was at the end of my rope. The cut backs kept occurring even after losing 30 lbs. I look anorexic.
But when I went to the intake, not sure what I was going to say, for fear of not being accepted because of chronic pain, ( I had read many methadone clinics won’t take you If you are a chronic pain patient ) the paperwork asked if you have chronic pain and the meds you take. I was shocked at how many chronic pain patients are having to do this!
I was at my pain management since 2013, 100% compliant! Then came the guidelines and the cutbacks were somewhat manageable at first.. I had been on methadone for 10 years with a breakthrough pain med and had some quality of life. In Jan 2019 the methadone was taken from me and I was put on a different long acting pain medication and I went down hill since then. In Dec I had a terrible flare up and my primary and gastro Dr. told me to ask my pain Dr. for a little extra help with my meds for a short time. The nurse practitioner agreed I needed a little help, I had my MRI results with me. But the Dr. who is the owner of this pain management said no.
I am on my 5th day now of methadone. The dose I am at right now is helping my pain more than the pain medicine I was getting. I may increase every 2 days. The clinic where I’m going are so understanding!

Unbelievable what they are doing to us. I’m not suggesting this to anyone in particular but basically I couldn’t go on with all the uncaringness and the suggestions of more steroid shots and nerve blocks which did nothing, and more suggestions to see a surgeon after already having 2 failed neck and lower back surgeries.

God bless each and everyone of us. Keep fighting!

Jeffrey Sampson

I sadly have been in very serious chronic pain from early childhood due to arthritis and Epilepsy.
I had to see my doctor a few days ago for a follow-up. I have very severe painful conditions psoriasis with psoriatic arthritis, ankolosing spondylitis along with other serious condition’s that have snowballed including several years ago I was in a horrendous twenty eight foot fall at work I was seriously injured from closed head injuries, C-spine fractures, lower lumbar fracture’s and other broken bone okay a little of my history not done yet it gets worse!

I am now dying from idiopathic pulmonary fibrosis. What little medications and radiation nothing is slowing it down or stopping it at all. My doctor just acknowledged just how severe my pain levels are but refuses to increase pain meds for any reason! Why? Here is what he said to me, if your in an accident or injured and we have to operate my pain med levels could cause problems, huh, what? He angered me with his excuse him and I have talked in depth about my wishes when something does go terribly wrong and I start dying all I want is humane treatment drug me enough to slow the pain and let me die do nothing else I do not want to be saved for what reason to suffer or live on life support no thanks I have absolutely zero fear of death. I very strongly believe in God and Jesus let me die and go to heaven this has been a very hard long road at fifty eight years old enough is enough respect my wishes the morphine levels were reduced three years ago and so was the oxycodone they were kind and increased flexirill to three times per day and started me on nortriptilline now increased that from 25mgs to 50mgs because 25mgs was considered a very low dose.
I just cannot for the life of me understand why I cannot be given a much more comfortable dosage of medication, there really is zero chance of me surviving not to mention they cannot operate on me for any reason whatsoever and I have made it very clear leave me alone!

Ann Sable

Arianne, my heart goes out to you and all those who suffer. I too, can relate to much you have written. Quite emotional and a tremendously strong visual piece. Felt very deeply on my end. Thank you for this and may you find relief.
Many blessings upon you,
Ann Sable

Well I’m starting to see quite a few short advertisements during Prime Time hours about tell the truth about opiate addiction. And it uses teenagers to adults saying that they had surgery and they become addicted. I just change the channel soon as I see it come on. I will give them no support. Prop / whoever else driving the propaganda in to everyone’s home. If this was true that every grandparent in the world would have addiction Generations after Generations. See the stupidity in their thinking? my doctor said it’s all about using marijuana in the future so they can tax it. Very few will be able to afford it. And it doesn’t work for pain. This may sound spiteful but I hope those who are doing this end up in chronic pain. I wish I was a fly on the wall to look into their lives once it interferes with their life. As many chronic pain people there is yet we have not overcome the bad treatment we are receiving or no treatment and yet such a small group of people have had so much power to take influence over our medical treatment. What does this say about chronic pain people? For one they found it easy target because we could not form Mass groups. We would have been able to if our opiates wouldn’t have been taken away. If we want to live we’re going to have to fight.

Cynthia

So beautifully written..thank you…..my story is very similar…And I continue to write to all my elected officials, state and federal….I guess we mustn’t give up, although I’ve been doing this writing and calling for 4 years and things seem to be getting worse. Obviously we , as a group, haven’t hit on an approach that is effective yet. I think if the doctors banned together and took a stand against what’s happening, maybe boycott in some way, THAT would get the DEA out of the picture,

Ronda Dohse

Thank you Ann for a very well articulated and I hope impactful letter. The truth is that chronic pain patients and doctors are “low hanging fruit” easy to target and vilify. Praying for a return to some quality of life for you and your family.

Laura Smith

Arianne I cried as I read this letter. I could have written it. I was hurt 6/12/1997, so I have been dealing with the dibilitating pain for a long time! The end for me was when my PCP retired and kicked me to the curb, no pain meds, no PCP, nothing. Some days I’m not sure why I continue to fight.

dismay

I can so relate to this. My life is being utterly destroeyed by the failure to get the pain coverage I need. For a variety of reasons, I just finished, today, a period of three full weeks with my pain covered. I am sleeping every night again. I am less hyper-aroused and unable rto control my speech and loss of memory. And this leaves me determined to find a way to get the proper dosage of the only medication that covers my pain. I am so furious about this determined effort on the part of some people to cause harm to women, people of LOW SES and illicit drug dealers and users I am ready to do some serious damage. I absolutely would harm some of the people responsible for this if I could. I remember a doctor who harmed me. He caused my pain to shoot so high I went into shock! First I lost my hearing, then my vision, then my consciousnes. The nurse gently patting my cheek trying to rouse me back to consciousness said “It’s just a little shocking.” Easy for her to say! That pain was enormous. I would have torn that doctors throat out with my teeth if he had not RUN from the room as quickly as he did. He knew that he had caused needless serious harm.

As today, plenty of people know they are causing serious needless harm. Chronic pain kills. That is the bottom line. My life is being terminated and the murderers responsible for it are unconcerned. They not only do not care. They are pleased. That is the truth. Too bad if people lack the courage to admit that. This is America. One developed nation has more children in poverty than the United States. ONE. It is way past the time that people smell the roses or the offal that is the USA. A place that values dollars not human lives. Wake up, people. There is a social uprising needed. Our living in pain is no accident.

Sharon

I truly appreciate your strong message which speaks for many people including me.

Adrianne, great and insightful letter. Thank you for doing that in the midst of your sufferings. I pray that heed is taken to your fine words. Keep strong Warrior! Hugs, Maureen M.

Tony hardy

We do care and lots of people care, but the state and government doesn’t care at ALL!!! Which is said. We are getting punished for what others do and it’s not right.But the government doesn’t care about what’s right all they care about is lieing and pushing fake news and agendas.they want people to commit suicide and it’s not right, they want people to suffer needlessly. I know one day I will commit suicide, it’s sad to say but it’s a true fact. I will not live my life in stuck in bed crying and suffering, but that’s what it’s coming to.

Thank you again Arienne. You are a beautiful soul for sure.

Katie Olmstead

I am so sorry for your suffering, Arianne, but you sure have a good, clear, strong voice. Thank you for this.

Lisa Hess

Dearest Arianne, I live on the other side of the country in NJ. Your words could have been mine with the exception that my neck injuries were from a car accident 24 years ago. I’ve already had five spine surgeries and another very dangerous and could-be life changing (for the worse) cervical surgery this coming Monday. I am terrified. It’s not the surgery that terrifies me, it is the post-op care that frightens me. I’m afraid that I will not receive pain medication due to the misnomer of the state legislature, thank you Chris Christie. And, this won’t be the first time that I’ve not received surgical pain management. If this surgery wasn’t of the utmost urgency, I wouldn’t be doing it. To not have this surgery would put my life in great danger of permanent paralysis. Our lives could now read like a chapter in National History books about how the Addiction Crisis led to pain patient’s deaths because no one listened. It seems that the government cannot do two things at once, so they stick with what they think they know, which is all heresay. It’s crazy, but the Government can’t see past their noses. Lately, I’ve watched a lot of TV (because of being in bed so much) and Hollywood has gotten most of it right as to what is actually causing this problem: Heroin and Fake Fentanyl (yes I watch a lot of cop and hospital shows lol). Shows do not mention what is happening to chronic pain patients, but it has recognized what the issue at hand is really about and that is not prescription opioids. For once, it would be nice if Washington would recognize the real problem and bring our lives back to some sort of normalcy.

Sharon

I just called the Governor two days ago and told him the same thing as mrs Gassaway. I spoke to governors aid. Ruben. And told him the same thing. Also just one of my medicines is 568 dollars and my social security check is 615 dollars. That leaves 47 to live on. Goveroner please do something.

Cindy too

So well written. I’m keeping it.

Holly

Well said Arianne! God bless you. Some of what you wrote is me!

David Alvarado

Even as Texan,could not have put a better letter than the one I just read,and can personally relate to as a chronic pain patient myself and it is also a fact that the patient s that do everything by the book and try to go the legal way in coping with our every day struggle s to cope with our pain due to accidents,our a life changing health issue,We get compared to the street level user that go about having to deal with drug use to survive in that lifestyle.The CDC has to wake up and realize that you cannot punish the chronic pain patient s.like we are wild animals in society. Congress wake up and quit trying to build a Wall against the Pain patient s in the United States of America.

Thomas Wayne Kidd

I pray that I am wrong is what I meant.

Thomas Wayne Kidd

I pray that I am not wrong but I fear that this plea will again fall on deaf ears, as those in power have proven they could care less about the sick and dying of our once compassionate country. Thank you for trying.

J. A.

Thank you. The lay out of the factual actuality describing political initiated opioid hysteria is spot on.
I’m in Pennsylvania sending you the hope of positive outcomes of for chronic pain patients.
Governor Newsom needs to act and respond in favor of allowing opiate analgesics for pain moderation for those needing these prescribed medications.

Jeannette mastenbrook

Arianne sorry to hear of your struggles with pain. Thoughts and prayers for you today. This just is not right to leave someone in pain like this. I pray that somehow you are able to recieve the medicine you need to manage pain and have “somekind” of normal in your life!

Mary

My hearts hurts so bad for you. I am very impressed with your letter and pray you get some reaction, POSITIVE reaction for you and others like us.
Thanks for sharing!

Gail Honadle

I’m 71, I’ve not drawn a pain free breathe since my 40’s. worst are GI I believed Rheumatologist that OA drugs would treat OA pain, He was totally misinformed only thing they did was RUIN my GI tract. GERD soon became so bad my Esophagus was damaged with Barrett’s which is a Pre-Cancer..Gastropresis,Slow Digestion. What takes a normal person 1 ht to digest me 4 MORE in pain. Then 4 yrs of being misdiagnosed with Idiopathic Colitis. The facts were plain for GP it’s lack of training in Medical school that led to 4 yrs of in and out of the hospital because the only Freaking test they’d run was a CT which is useless for GP it has it’s one set of test. Then OP set in, those drugs absolutely hated me, 1 of the most Common Fosamax was a A Fib trip to the ER on 1 pill. Pharmaceutical is another NON Medical School lack of use. Statins, 5 of them horrible side effects. I’ve been Hypothyroid since my 20’s, don’t dismiss it as a nuisance disease, it is a major one. Spinal Degeneration, Stenosis, Neuropathy, We can’t treat that, your spine will crumble. Finally Calcified Lumbar. There is a to Small to repair AB hernia and twice torn Rotatory cuff. Vertigo led to Meniere’s. Finally after 2 weeks with ankles and legs swollen sent to the Neurologist, her first remark was “DO YOU SEE A CARDIO” that chest pain that had been there forever it seems was an Enlarged Heart with a small to fix Mitral valve leak. In this day where you get frequent X Rays of the chest HOW DO YOU MISS SOMETHING AS MAJOR AS AN ENLARGED HEART WITH A MITRAL VALVE LEAK, they don’t form over Night. Primary, & Endo had known for years I had one. BP gets wacky because of PAIN and guess who can’t take the meds..ME. Today I’m ready for a wheelchair due to the GI and Spinal pain. Walk…Go to H. It is to painful. There was I time I could do 2 miles round trip with ease. Now getting to the Bathroom is a ordeal. Bowels no longer work, Colostomy bag next? We need better MED Schools..Badly educated Dr kill.

Jerry

Thank you for writing such a heartfelt and honest letter. I too am a member of the pain community in a California and I understand just how difficult it is for you to share your pain with the world, and hopefully the Governor. I wish the Governor or someone with the power to change things would hear our cry. The United States is filled with people in pain, at a time when the opioid medicine to alleviate their pain is available for literally pennies per dose. It is intentionally being withheld from us, so we suffer. We live in a country which leaves it’s people in pain to suffer, and no one wants to believe such a thing could be true, but it is, and we continue to suffer.

Susan Vrabel-Williams

I was very moved reading your post.
I, too, am a chronic pain patient and have been denied meds for nearly six years.
I have degenerative disc disease, spinal stenosis, fibromyalgia and horrible, intractable pain.
I used to be able to do things for myself but it is now impossible.
I recently had my 14th surgery and I am fused and hardwared from T-2 down to my sacrum. I never thought I’d say this, but I miss doing housework!
Doing things that most people take for granted is a major undertaking for me. I don’t mean to be so personal, but I can’t even clean my own bottom after using the bathroom.
My two best friends moved to Syracuse NY from Massachusetts to help me, or I would be in assisted living right now.
I was a nurse in my former life and was hurt at work back in March of 1986.
When I was getting proper pain meds, I didn’t get high from them. They allowed me to function instead of just existing. I feel useless and wonder why I am still living.
My orthopedic surgeon is writing woefully inadequate medication prescriptions for me, but this is not going to last forever.
I’m scared to death to go to see my so-called PM docs next month. I have been seeing them for over two years and they have done nothing for me. I know from experience that this clinic is rabidly anti-opioid and I am afraid they will take me off what little medication I now get.
That is my story and I wish you the best of luck.

Susan Vrabel-Williams
Syracuse, NY

Deborah

Thank you arianne, as I lay in pain and been in ER all day. My life is almost over. And I still can’t get relief. Please help me

Steven

Well said. I agree and sign up! Most ignore us. Please we have done nothing to pretend we have no.20 year neuropathy.