A Letter from a Chronic Pain Caregiver

A Letter from a Chronic Pain Caregiver

Editor’s note: When an Arizona man sent us an email today asking us to publish a letter, we read it as we try to read everything our readers send. Once we read this note from J.R. Wilson that told the story of his as a caregiver and his wife Kathy’s battle with chronic pain, we thought the best thing to do was to print it, unedited.

Letter to the National Pain Report

November 4, 2019

This morning, my wife pointed out that it seems as though nearly all of the letters written to you are from the individuals who are the pain sufferers themselves and that their letters are about their own personal journey. These letters are certainly valid and truly point out the plight of so many people struggling with pain. However, it seems as there are few, if any, letters pointing out the suffering of spouses, significant others, and family.

My wife was in a horrific auto accident in 1996, where someone blew through a stop sign and t-boned her VW microbus. She had to be cut out of the vehicle (thank you Jaws-of-Life) and flown by helicopter to the closest trauma center. She was in a coma for days and when she awoke the first thing the doctor told her was that she would never walk again and never think again! This was before I met her…

A few years later I met her and we started dating. She had told me about her accident, but the more we got to know each other, the more I learned about it and the aftermath. When I met her, she was pretty much a hermit. She mostly stayed at home (with her teenage son – who was also in the accident) and only went out when she had to. I found out that not only did she suffer from tremendous and continuous pain, but that she also suffered from a Severe Traumatic Brain Injury. Yep, kind of a double whammy! Her accident had broken her neck, broken one leg, crushed the other leg, and more… Within weeks of her accident her boyfriend had left her and so had her daughter. They just couldn’t cope with this “new” person. Not only couldn’t they cope, they really didn’t believe she was as bad as she was.

After years of seeing a multitude of doctors and clinics, and trying all sorts of medications and therapies, it had become apparent that the ONLY thing that helped her and gave her any chance for a normal quality of life was methadone. She was always sure that she had an adequate supply with her. HER PRIMARY CARE PHYSICAN understood her condition and provided her with the prescriptions she needed. (We are firm believers in the fact that a patient’s primary care physician is the one medical professional who truly knows the patient and should be the one prescribing whatever medicines that are needed – narcotics or not). Kathy never took the medication to “get high” and never showed any signs that she was anything but “normal” when she took the methadone. Of course, over the years, the entity prescribing her medication changed from being a Primary Care Physician to a “Pain Doctor” or from someone working at a Pain Clinic…more on that later.

Anyway, before long we fell in love and within a couple of years we got married. Being in love with a person suffering from pain (especially when coupled with a brain injury) is no easy matter! It requires significant sacrifices. Everything from walking slower, to skipping activities that will tire them (or that they just aren’t capable of participating in), to taking them to see doctors, to listening to them, to holding them, to understanding their pain and suffering, to not getting mad at them, and to exercising a high level of empathy. The amount of time and effort spent on these things equates to countless hours every month.

The good news is that after more than twenty years, she has learned to cope more and more with the brain injury. It hasn’t and won’t ever go away and there will always be challenges (for both of us) – but she is getting “better”. By “better” I mean learning to deal with the issue. The pain, on the other hand, hasn’t gotten any better, and in fact, has gotten worse. Kathy truly suffers from pain constantly – and NOW she has to deal with the insane vendetta against opioids that has ensnared legitimate pain sufferers and placed them in the same group as drug addicts and abusers. I don’t know which is worse – her battling the pain on a daily (and often hourly) basis or having to deal with the frenzy of laws, rules, and attitudes that are making any sort of effective, legitimate pain relief evil!

We live in Southeast Arizona, in a county that it the size of Connecticut and Rhode Island – combined! There isn’t a single doctor or clinic that we can get help from in the entire county! There are local clinics where heroin addicts can get methadone – but no place for my wife to get care, help, or prescriptions of methadone. It’s pretty sad that there is so much compassion and easy availability of opioids for drug users and abusers – but not for legitimate chronic pain sufferers!

Currently, we have to deal with a “Pain Clinic” that is almost four hours away to get her monthly prescriptions. Fortunately, she can do most of her appointments via teleconference, but does have to show up at least once every six months for an in-person appointment. This is very time consuming and costly. I drive her to these appointments, as she is unable to do it on her own…just another factor that most people dismiss – the time and effort that loved ones expend on and for the pain sufferer. Not only are the appointments time consuming – my wife is at the mercy of these people! Since our initial visit they have required an EKG, frequent drug screenings, blood tests AND have cut her monthly allotment of pills IN HALF! She doesn’t even see a doctor – just a physician’s assistant! How could seeing a PA possibly be better than seeing a Primary Care Physician! Her appointments last about ten minutes and don’t address or suggest any alternatives for her pain. When we asked the PA why he had cut her dosage in half (after it had been the prescribed amount for over twenty years) he replied that he “Just didn’t feel comfortable prescribing that amount”. WOW. Actual doctors had prescribed this for years and it worked, but he arbitrarily cut her dosage and now she suffers more than she should and has no alternative, no place for help, and no one to call!

We don’t feel that the general population has any idea what people with Complex Regional Pain Syndrome go through. We have to spend hours looking for help, going to appointments, and obtaining prescriptions all the while having to put up with the intimidation and stigma of being a “drug user” – since most entities throw my wife and other pain sufferers in to the same category as drug abusers and illegal drug users.

I love my wife and would do anything for her and she knows that and appreciates it and that means a lot to me. Don’t for a minute think that the person with pain is the only one who suffers.

J. R. Wilson

Sierra Vista, AZ

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Authored by: Ed Coghlan

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Dick fort

Iv gotten to the point where honestly ur almost better off going to a methadone clinic then seeing a pain doctor or primary care doctor u get more there then u would at any other place only downside is ur stigmatized and have to go everyday

Sarah Mahany

Everyone.. the most important thing is to have someone to help you ihave no one. So be thankful.

Eddy Haynes

Dear Mr. Wilson,
You are a brave and honorable man. Thank you for sharing your feelings and situation with all of us. My husband is also a caretaker. He is beyond kind, loving, steady. I’m not sure where I would be without him. He’s been here for me through numerous surgeries, 4 bouts of withdrawals in less that 4 years and now my having zero pain medications. Your expressiveness puts a true and accurate picture of a lot of us. At least those of us lucky enough to have a spouse. Please, take care. You are a critical element in the battle with pain.

Rose Murphy

Thank you for printing my UK email about Article 15 of the Human Rights Act. I read your excellent posts daily as it grieves me to read what people in persistent psin are going through in your country. I was fortunate to liaise with the late Professor Patrick Wall co-authorn of The Gate Control theory of pain. In his book: The Challenge of Pain, he wrote that there is mire nonsense written about addicrion by the medical profession & the media than on any other medical topic. Keep on the good fight, guys. How about inviting IASP – The International Association of the Study of Pain to publicly highlight the atrocious discriminatory treatment too many of you are being punished with. So unacceptable….

Denise

Wow. God Bless You for this most truthful and well-written letter.

Theo Hughes

My story is not much different from JR’s. My wife also suffers from CRPS from an injury. Our story only goes back 11 years. I can easily identify with all of the situations he described. We fortunately live near a large metroplex in Texas so a Pain Clinic is available in a reasonable drive. being involved in the local aviation community, Since they are 4 hours away from their clinic, I would suggest he reach out to Angel Flight (not the commercial one) at angelflight.com. It is an organization of volunteer private pilots that transports patients needing specialist medical care for your trips to the clinic. If it works out it could cut down on the time and stress of those trips. I know my wife finds riding in a car for more than an hour exhausting and painful (she also has 3 bad vertabrae in her lower back) . I hope this helps.

Anne M Cassler

Ohmygod, your story is my story completely, except I don’t have a loving husband….he left because he was “sick of having a sick wife and a sick daughter ” (another story). I am afraid, very afraid, of what will happen to chronic severe pain sufferers. When asked about my pain levels from 1 – 10 , I call it my Misery Index. I have syringomyelia cervical and thoracic spine 8, CIDP peripheral nerve pain 7, lymphedema legs 5. lower back 5, and now knee 5 and an undiagnosed thigh pain 8 for a total 38 misery index. Why is it so difficult for doctors and mostly PA’s to understand. ?

Lisa Hess

For those asking why there are no “Class Action” law suits happening; I’ve been trying to do this for years. I live in the Northeast and have spoken to several lawyers about this quest. They won’t touch it. It will take a big, big named lawyer to take on such a case and I don’t know any of those.

Holly

I just sat here in my recliner (I call it my coffin now) and cried my eyes out. We are all suffering so bad and the “First do no harm” applies to none of us. I am so sorry for your wife but she’s blessed having you! I pray for better days for all of us. God bless your wife and you!

Melissa

She is so lucky to have you. It’s not easy knowing your a burden to the people that you love. The pain does change a person and the guilt you feel doesn’t help. It’s so important to have a support system in place to get through it. Especially when you feel like giving up.

I deal with the same issue. We moved from NJ to Florida. No doctor will take over my care down here. So every 90 days I have to fly back to NJ with my spouse at a great expense. I have to get my mother in law who doesn’t believe I am in as much pain as I am in to watch our 5 children. Because she doesn’t want to do it, we have to do a same day turn around trip. We also have to find someone to pick us up at the airport, take us to the doctor, pharmacy and back to the airport. Leaving our house at 5am and not getting home until 10:30 at night. Airport to airport, airport to doctors office, doctors office to pharmacy, pharmacy back to the airport. It’s also impossible to find pharmacies who will fill the out of state scripts even though my doctor sends it electronically. Every month is a nightmare.

Barbara Snow

This is all on the DEA. The have an public comment going on right now. Find it under opioid somewhere.

Plus,

Nice story. Please finish it by following up to let us know that you have saved the others of us from the malpractice of this mid- level provider. You can report to the State Board or better yet file a lawsuit against everyone associated.
Please finish it up. Ask for help from all of us. Let’s all get involved… it’s time.

Ralph Maddox

Oh I get so mad when I hear these accounts of TORTURE by our medical system. These folks story needs to be sent to EVERY news outlet in this country. It is fine here but like preaching to the choir. We all know their situation. So many of us go through the same thing. My heart goes out to this lady and her husband.

Rosalind Rivera

Your wife is very fortunate in having you by her side. She has a good support system and as a chronic and intractable pain victim, I can not ell you that this makes all the difference in the way elf.
I on the other hand have also had my pain meds dosages cut drastically. I drive myself to my pain management doctor every month and it is about a 40 minute difficult drive. I have no support system. My youngest son that lives bed close by relocated back to the east coast where I am at righteous Bally from. I am 67 years old and among other painful issues, I have Spinal Stenosis, failed surgery, Lupus, Rheumatoid Arthritis, Fibrosis myalgia, CFS and other medical issues, many that cause great pain. I lived in an isolated area in the Mojave desert and don’t know a soul. My son brought me out here and left when though even a goodbye. How’s that for my chronic depression!

Tabitha shileds

Chronic Pain Patients Protection Act NOW. Who will sponsor this legislation?

M.C.

Please google Angel Flight Southwest. Angel Flight is all over the country with different chapters i.e., southwest, southeast, northeast etc., Volunteer pilots will fly your wife, & you may accompany her as well, from the nearest small airport by your home to the nearest small airport by the doctor’s office. They do this for free. Some areas have volunteer drivers on the doctors end, some you need to get a taxi or Uber/Lyft. They are a wonderful organization filled with very caring people. I wish you both luck. I too have CRPS.

Stephen

I agree completely that our primary care DOCTOR should be the one prescribing pain meds. They know us better than any other Health care professional. The only time I have problems getting pain meds is when I can’t get an appointment with my primary care doc and have to deal with the PA’s or Nurse practitioners in his office. They are deathly afraid of treating me. A NP whom I was seeing for the first time started my first involuntary taper. Another time a NP took 10 days to write my pain med scrips while I went into withdrawal. She also made a mistake and requested an immediate release pain med instead of extended release. Just recently I had to see a new PA (who had 4 months experience!) for my every 3rd month appt per pain management contract. When I asked him to write my scripts, his eyes got real big, and he told me I needed to go to a pain mgt clinic. He obviously did not even open my chart. Got ahold of my wonderful DOCTOR and he wrote my scripts.
Lesson learned, schedule appts every 90 days with my doctor only.

Rebecca Hollingsworth

Wow! That sure hit home. Just yesterday my husband and I went to our “monthly” pain mgmt appt. and heard the exact same line of bullsh*t. Dr. said I don’t feel comfortable prescribing that dosage. This is AFTER already being cut off at the knees by more than 100 mg per day since the beginning of the year. Are u serious? It didn’t matter that both of us have been chronic pain patients for 15 years. Ridiculous is all I can say. My husband is disabled and also suffers from a traumatic brain injury and a stroke along with all of the pain issues that between us would probably take up the rest of the space for this response. I have been considering applying for disability for myself although this is not what either of us wanted. I chose 5 years ago not to have spinal fusion surgery. I knew that wouldn’t be the end of it as the surgeon already stated that after the lower 3 lumbar were fused, the upper 2 would be done at a later date. Everyone understands that when this process begins, it usually continues. I declined the surgery, told my dr. that I just wanted to continue working for as long as I could. Never crossed my mind that the life giving medication would be yanked from us . One reason I declined surgery was that I knew my husband couldn’t take care of me. It involved a 3 to 6 month recovery period with in home care, and blah blah blah. I wasn’t even 50 years old. As a chronic pain sufferer along with being a chronic pain caregiver, I have a great understanding of how the author feels. You are not only fighting for your own life, but for the life and quality of life for your loved one. All of us pain patients have been put through the ringer and jumped through all of the hoops only to wind up in a huge pile of [edit]. That’s not ok.

Walter Strickland

How would we as a group bring a Class Action per Article 15 and to whom would we direct the Class Action ? I am really interested in this.

Cindy too

To the author

What’s happened to your wife is horrific, and, you are a saint and she is so lucky to have you.
So many CPP’s lose friends and family, so I wasn’t shocked that her BF left her, but can’t get over that her daughter did too.

Anyway, one thing for you, fyi — the EKG’s do seem legit to me b/c methadone can cause heart damage. I have one periodically b/c I’m on methadone. The rest of it is, of course, baloney.

Your wife should claim she’s an addict to be able to get her methadone locally.

Cindy too

Rose Murphy’s post about a class action on behalf of CPP’s, using Article 15 of the Human Rights Act really gets my attention.

I’ve wondered why there’s no class action asserting that denying meds constitutes cruel and unusual punishment under the Constitution.

Why dont’ leaders in the pain community hire lawyers for this?

I’m sure that all of us would contribute money for legal fees if needed.

Maggie

I am 40 years old and have not committed energy to searching for a partner. It is so rare to find someone so understanding and caring… and forgiving as well. We did not ask for this pain, and I try not to take it out on anyone. There were points in my life that were real “lightbulb” moments… epiphanies… and not the good kind:

1. I didn’t want to get behind the wheel and drive… because I’m too tired (turns out I may have narcolepsy. I definitely have sleep apnea and am still tired despite it being controlled with CPAP. Funny, tho, a doctor told me I was ‘just depressed’ back when I asked for the sleep study so I was undiagnosed for about 7 years).

2. I wasn’t going to have a family. I spent much of my reproductive years fighting doctors who told me I was just depressed, and just trying to make it through the day. A relationship would have been nice and I don’t know what being alone in my old age will look like in the condition I’m likely to end up in with progressive osteoarthritis that’s affecting my spine.

3. If I’m lucky, I will out-live my parents and then pass quietly somehow before ‘old age.’ Hopefully still with some pain control. I pray that I at least have that left after what else has been lost in my life because of pain I never asked for.

4. I’ll probably always have to live somewhere with reliable public transit, and I should never be over-confident about my financial situation (which isn’t anything to write home about — with all the medical expenses I have).

It sounds depressing but day to day, I have a pretty fulfilling life. I still do have access to pain medications. Nobody wants to live to an old age where they are so debilitated that they can’t enjoy their life. I still can enjoy nature and I love to learn. I have a pet that brings me a lot of joy. I have learned to cope with the pain in positive ways but quality of life is what these doctors are stealing away from patients & that’s the crucial difference.

Mary H

I too have been there for ober 20 years.i live in Phoenix and have finally found a pain management group that is amazing. They worked with to get a plan to deal with all of the chronic and short term pain without making you feel like a junkie.

Delta

Thank you for speaking for the caregiver. I don’t know what it will take to change this current hellish drive to cut meds out if lives.

Rose mentioned a class action law suit and human rights arguments. I feel that this is causing mass suffering and trauma. I wish I knew how to begin to address this problem we face.

Until there’s change, keep fighting for your voices to be heard. Bless you.

Thank you to Mr. Wilson for taking the time to write this heartfelt letter. Although I am well aware of the hardships, suffering, the inhumanity of 70% of doctors, PA`s and some nurses, what your letter spoke to me was that there are a few humans that could still love us. I think you are as rare as winning the lottery, (for many as rare as finding a doctor) though I for one had zero hope of ever believing I might ever find love!
Your letter offers hope for one of the many areas of life we have lost.

Leslie Meadows

Thank you Mr. Wilson for speaking ya’lls truth! It’s very sad we have come to this,all because of drug abusers/suicides a section of the population that we have been bunched up in.You are an Angel on earth for your wife,thank you for being there for her.
Leslie

Lynette

I suffer from RSD and actually go to a methadone clinic . When I realized my medication would be taken away I decided I didn’t care about the stigma attached to a clinic. Heck I was already being labeled an addict.

Rose

Dear J.R.,
What a beautiful husband you are! The love you have for your wife shines through in your words. She’s very blessed to have you, and I’m sure she knows that. My husband has dealt with my chronic pain issues for years! He’s made my life worth living. Your love and care for your wife I’m sure has made her want to continue and go on. Love and understanding is of utter importance. As are the modalities that help us. Whether they be pain meds, or other therapies.
Not many understand my life, or the life of a caregiver. He often suffers because he feels so powerless and wishes he could lessen my suffering. And I in turn hurt for him.
He runs a business and has to do all my running around. From washing clothes, to grocery shopping, doctor visits, pharmacy runs, helping around the house, and all that running a restaurant entails. I feel tremendous guilt for the burdens he carries. But he never complains. God bless you and people like our caregiver’s. It’s a thankless job. But he always reminds me “In sickness and in health”. I will pray your wife gets the proper treatment soon!!

You’re a hero!

Sei Bui

Okay i have been a chronic pain patient for the last 17 yrs. Severe osteo arthritis, been rear ended 5 times, back surgeries, etc. Anyway i was in alot of pain from working to clr my 83 yr old mom’s house to sell. I was about an 8 that day. I came across one of the 40 mg oxycontin pills i used to be prescribed in my old room! I know we are never supposed to deviate, and i dont, but i was just in a ton of pain, so i took it! WOW, I remember this, the diff between almost total relief and half of the script that barely covers the pain! 30 mins later I was able to stand up straight, the pain in my legs and back went down to a 2! It was such a WONDERFUL FEELING to have my pain controlled like it used to be!!! I had forgotten. When my meds were cut in half so was my function! I had to do a disability retiremnt from a job I really loved and had GREAT pay! I was able to take care of my family and my home, have sex without it being a totally painful experience, i realized how great life was when I had enough meds on board, and how degraded my life has become. It’s just not right to have relief out there and not be able to access it, even with a spotless record of doing everything that was asked of me regarding my meds! I want my life back!! It had been so long since i felt that good! I REALLY REALLY WANT MY LIFE BACK!!!

Kris Aaron

“Just didn’t feel comfortable prescribing that amount” actually means “Scared spitless of getting in trouble with the DEA” and “my malpractice insurer will double my already expensive rates if I write opioid prescriptions.”
The doctors are following the orders of agents and insurers who have absolutely no medical training — but a strong vested interest in limiting pain patients’ access to opioids. That “interest” is both job security and greed.
As cannabis is legalized in more states every year, the DEA’s arrest/conviction rates are down and legislators who approve their annual budget request are wondering why the US still needs an agency that no longer lives up to its storied reputation. Malpractice insurers have discovered a gold mine hidden in the “deep pockets” of pain specialists trying to help patients retain their opioid prescriptions. Health insurers are using the opioid hysteria as a reason to deny patients’ claims.
And Physicians for Responsible Opioid Prescribing (PROP) encourages drug “recovery” clinics to open their doors to the desperate who have lost the prescriptions they’ve been taking for years without a problem. The clinics have no way to treat chronic pain, but they’re delighted to “help” those with broken bodies… for a price, as if they were drug addicted instead of drug dependent.
There’s a lot of money to be made off pain patients, their friends and families.

Diana

…he “Just didn’t feel comfortable prescribing that amount”

I have seen remark that far too many time in my pain groups online and I always have to stop at the word ‘COMFORTABLE’ – golly, when was the last time SHE felt anywhere near comfortable? Has this PA any idea whatsoever what all these pain patients go through everyday of their lives? I do know (because my DIL is a doctor) the doctors and I’d guess the PAs too, are taught that everyone they see is a ‘drug seeker’. That’s their term. Drug seeker. I hate that this couple has to go through this hateful situation and pray they will get a new PA who will be willing to help.

I have been very lucky, so far, in that my pain clinic takes pain seriously and does what it can to help. So far. But I cringe to think if they change like so many others have.

Comfortable – oh boy, we’d all like to be comfortable!

Kim

Ed Coghlan, thank you for your post, so very spot on! My husband too, has to go through what you do and is very patient. As a chronic pain patient, I am getting the same treatment as if I’m a addict. I am also a victim of “many” ( simply put, just dumb luck) car accidents, one so bad I should have been dead and another my brother was dead. I didn’t ask to be this way and you wouldn’t think that it is humane to let us suffer to a point, I feel we should have a Jack Kevorkian for when we are not prescribed anything for pain. These ppl are seriously getting prayers from me that they too will feel our pain. I wouldn’t normally pray for somethg so wicked, however they are messing with the only quality of life I have. I don’t drink alcohol cuz it makes me sick and I’m too afraid to buy all the drugs that are coming into our country off the street, that they are refusing to believe is the real problem. I just seen on the news a huge narcotic drug bust that was massive. The problem isn’t coming from the Dr.s. years ago I had some dental work done and got 30 pills, guess what folks, I didn’t become addicted, & still had like 10 of them in my medicine cabinet for over 8 years. I still don’t think I’m an addict, I am dependant & only cuz of my pain. So when these ppl attacking our quality of life have God bestow on them chronic pain, I truly hope that then, they will be more understanding. I keep praying that God will bring understanding to the ones affecting the quality of life of chronic pain patients that would rather be dead than to be in the moderate & severe pain that we are in.24/7 it took me years to accept this pain, & still sometimes I am overwhelmed with pain. I also hardly leave my house, I’m overweight by a 50lb margin, but they would rather ignore that you do much better in life in general when you have meds that allow you to function like the rest of the world.

Janna Crickmore

What a great and compassionate man to care for his wife this way. Good on you JR Wilson. My husband feels the same way. He often wants to go into my pain clinic and rip the providers limb from limb.

Beth

Thank you for sharing.

Stephen Abbey

God put opiates here for people with chronic pain. Those who take them away from legitimate patients are causing undo harm. Please put thing back like they were, but not for others to abuse and cause these problems for us!!. I think about suicide often!. Please have impathy.. Amen!!.

Everything he said is true

Nancy Wilson

You remind me of my amazing hubby. I love him so much! You are a wonderful husband, and it is a blessing you found each other. God bless your family!

Rose Murphy

Hell – I used to run a UK-wide community based self help persistent pain management charity. What puzzles me, possibly. Is why there isn’t a class action brought utilising Article 15 of the Human Rights Act by the hundreds even thousands of you who are being denied your pain releiving medication. It is a horrent. Article 15 – Decrees every human beings right to freedom from torture and degrading/demeaning treatment? This lady having her methadone arbitarily halfed on a whim by not even a pain management physician beggars belief. I believe that one of the first cases brought under Article 15 was in the US. The family of an elderly gentleman sued his nursing home for his lack of humane pain management medication. I believe that they won their case.

Margo

A remarkable story by this patient’s husband who understands how much these medications help others live from day to day, hour to hour, minute to minute and are now faced with being branded as drug addicts or abusers. Shame on the PA who cut her dosage, shame on her primary doctor who would not or could not treat her any longer, shame on media coverage ignoring those such as she. I appreciated the story written and the special care her husband gives to her. Others need to speak up, this is wrong, just plain wrong.

Martha

Bless you J.R., a thousand times over.
I am so sorry for both of your struggles. May we clone you? Every CPP needs a J.R. in their life. Again CPPs – try to print & mail this to head of your local hospital & your Congress & Senators. ‘Everyday people’ simply don’t understand what we have to go through in order to get our necessary pain meds. It’s ridiculous. NJ just passed a law that all Medical Marijuana patients need go to pain Dr. only ONE TIME per year!!! Us?? Every 30 or 90 days. Ludicrous.

A very heartfelt eye-opening letter from a wonderful man! A startling eye-opener for those who know nothing of chronic pain ( so-called family and friends) who have abandoned us just because we do hurt constantly through no fault of our own. It adds insult to injury when it looks like there is no end in sight to accompany our pain or our loneliness due to our government and others. Through it all I still continue to pray for all of us with faith. May God give you peace, comfort, and the strength to keep on keeping on. 💖

Granny

Mr. Wilson, thank you gor your kindness and service to your wife. We live in Tucson, and understand some of what you are saying because my hisband and I both iiffer from RSD… me, for 10yrs after shingles and a broken toe; him for 6 yrs after surgery.

You are absolutely right, and I can easily say it because we each are severe chronic pain sufferers and caregivers for the other… It is a very hard life, but love for each other makes a huge quality of life difference.

I do not know all of the doctors and things you have tried, and I do not know their policy on methadone, but it is at least worth a call given all the others we tried b4 deciding to work with them… Try calling Rincon Pain Management…Dr. Bhola is very good at his craft, and of the 3 different Pain Clinics I have tried here, they have been the best, by far.

Best wishes to you and your wife. This is a very hard row to hoe!

Tanja

I am empathetic for your wife’s CRPS. Please don’t assume us mid-level providers are ‘less than’ efficient as Primary care providers or board-certified pain doctors. I am an Integrative Advanced Practice Nurse who cares greatly for all of my CPP’s and does a great job per my patient reviews. Focus should be on all pain providers and if they are following best practices for chronic pain. I advise all patients to find a supportive match with their pain provider… there are still many pain providers doing an excellent job.

Alesia

You are a special type of person. Your letter is so well written. You show the level of pain your wife endures as well as what prescription medication has helped to relieve pain for over 2 decades. I want everyone to realize that she was under a physician’s care that whole time! She suffers CHRONIC pain. How in the world a physician’s assistant feels he knows better than a doctor who had over 2 decades of caring for the same patient. That he is somehow not comfortable prescribing the amount that worked for so long!!! Not comfortable?? How dare he utter those words!? She is no longer COMFORTABLE! Why he would prescribe the same medication at all is a question I want to ask him. This physician assistant is taking out his fears of inadequacy on her is more like it, I think. Someone has to oversee him. So it really falls to an unnamed doctor out there who allows this assistant to mis-treat patients
You sir, are a kind and loving person. Your wife is fortunate to have you as her spouse and as her advocate, too!

Maureen M.

Ed, Thank you for sharing this letter.
Mr. Wilson…God bless you. Kathy is very blessed to have met a man like you. I know that your lives aren’t the easiest. I too was T-Boned by a speeding/on her cell phone driver, while coming through an intersection 15 yrs ago.
I broke my back, have had 4 spine surgeries, many treatments, live in constant pain etc etc etc. The woman who hit me has no idea how she negatively effected my life.
That accident drastically changed my life forever. Once the inevitable was evident…I too lost my daughter who could not handle seeing supermom this way. She moved 3000 miles away 11 yrs ago.
I live alone and have no caregiver/support.
My heart breaks for Kathy having had to endure so much and being less medicated on top of it.
We can all relate to that. I too have a pain doc who refuses to ‘discuss’ my pain issues. Due to changes I can feel with my spine causing increased pain I asked for an updated MRI last week and he refused to order it! I just can’t understand why!
The ‘addict crisis’ (I refuse to call it the opioid crisis) has made our lives worse and all we can do is continue to educate this nation of the plight wrongfully given to us and our treatments and hang on to HOPE. It truly is non-sensible and horrific.
Keep strong Mr. Wilson. You are a good man and a good caregiver. I empathize with all that you both have to go through all. Maureen M.

Nancy Courtney M.A.

Thank you for sharing what you siffer as a caregiver who sacrifices much to give needed care. Two of my three adult children suffer from chronic pain due to Lyme disease since childhood which was never identified and treated. Lyme disease affects the cognitive with a short time and the physiological after many years. Eating disorders, thyroid disease, heart issues, are also a part of the long term consequences. My son (age 18) had a TBI from an accident, was in coma, paralyzed and made very vulnerable to an ignorant system. Both are in their 50’s and together we have found the care they need but suffer from the fear of the indignities of the pain management industry. The doctors are also suffering from the government’s lack of understanding of what is a crisis. I have learned to become an advocate and support person in advocating for themselves.

I became a neurotherapist in order to help my son, daughter and patients. As an M.A. Transpersonal Psychologist and Biblical student, everything fell short when it came to helping them find relief from pain.

The initial training in Neurofeedback released me (at age 66) from a traumatic birth and I have functioned at peak performance, even with the heartbreak of experiencing the lack of respect and dignity that patients and advocates receive, and at now age 82 continue to help my son and patients physically overcome the results of trauma as well as advocate.

I have found a neurofeedback system that I am comfortable with, which gives relief. My son and I have formed a 501(c)3 to bring this particular approach to patients who are “falling through the cracks”, especially children.

Trauma and disease need differant approaches and medication is part of the treatment. I do not suffer chronic pain and have struggled over a long time to understand and believe my loved ones. I have found great support from the National Pain Report and am so very grateful, as a parent and professional for everyone who shares their story.

Danny

Your wife is a very lucky woman, Mr. Wilson. I know, because I am a very lucky man with a wife who is my caregiver, my advocate, my chauffeur, and my best friend. I, too, married after my accident. I didn’t think I would ever marry because I couldn’t date or go out socially.

Caregivers like you suffer right along with CPPs and, in many ways, have a more difficult experience. I can’t speak for your wife, but I honestly don’t think I would have survived the last 28+ years if not for my wife. I think your wife would say the same. May God bless you for your unselfishness and caring ways.

Johnny Brown

Mr, Wilson, that’s one of the most compassionate story’s I’ve ever read! You love your wife no matter what!! Most men would have ran from her I’m sure you have helped her in ways untold I know God Will bless you!! I understand the situation as far as trying to get help for pain, I’ve been in chronic pain for almost 30 years, and have been cut off my medicine, thank God for any medicine your wife gets trust me half is better than nothing! May God bless you and your family..

Dorecia Wilde

And I’m 63 not a kid or junkie

Dorecia Wilde

That is so bad I know how she feels I have back neck knees and ankle pain 24/7 and don’t take anything because they don’t give it to me they only want to give shots that don’t work hopefully they will fix this before we give up and die