My Story: I Have Rights

My Story: I Have Rights

I’m 24 years old and have an autoimmune inflammatory disease called Ankylosing Spondylitis. This disease destroys my bones. It is causing me to have severe, painful problems with my teeth and jaw. It has fused together the vertebrate in my lower spine and it causes arthritic flare ups to happen throughout my body.

Needless to say, I am constantly in pain. Some of the time it’s manageable, most times it is not.

Here’s a bit of disease related visual background: I’m six foot two and if you were to see me without knowing me, you would think I looked like your typical drug using scumbag. My teeth are horrible, I’m extremely pale, my spine is hunched, I have no muscle and frankly, it’s embarrassing to be out in public sometimes because of how people treat me.

The teeth, the pale skin, the lack of muscle, these are all direct results from my disease. Yet I am shied away from by the general public. People move their children out of the way when I walk by. It is difficult to make polite conversation anywhere I am. Many people do not look me in the eyes. Often people are surprised if I do them a kind service like opening a door, letting them go before me in a line, or picking up something they have dropped.

Stephen Nowak and his daughter

Stephen Nowak and his daughter

I tend to look for opportunities to help people. I believe the reason I do this is for the moment of acceptance. The moment when whoever I can do something for realizes that I am not some white trash drug abusing scumbag.

I guess I hope that people will judge others less harshly if someone who looks like me represents what it means to be a gentleman. It makes me happy when I have the opportunity to show people that I am not what they think that I am.

Currently, I am going through a series of corrective dental surgeries to address the problem with my teeth. Between surgeries, my primary care physician prescribes Norco to get me through the weeks before the next surgery.

In the last few weeks, every healthcare professional I have seen and talked to has treated me like absolute dirt. I’m used to sideways looks and scrutinizing questions, but lately it has been miserable. My dentist, the dental assistant, and the surgeon’s insurance coordinator have all been a part of it. I have been patronized and put down by all of them.

Recently I went into the office and the surgeon prescribed Norco because he had to reschedule the surgery I was supposed to undergo that day. He said it was a lot more serious than he had thought and apologized.

I had asked to speak to him over the phone several times before when I called about the pain, but the woman who answers at the front desk was extremely rude to me every single time. When I went in to ask her a question about the pain management she answered it in a hostile, demeaning tone and then finished with, “By the way, your pharmacist called and told us about your ‘problem.’ I would try a different pharmacy if I were you.”

I was horrified. I didn’t know what to say to her I was so stunned. After a moment of silence I asked her what she meant by that statement and she refused to answer and walked away from me. I felt frustrated, humiliated and hurt. I am in pain. I have the right to have my pain managed. I have the right to be treated with respect.

I immediately called my pharmacy to see what was going on. I asked them to help me figure out who had red flagged me and why and what exactly was said. The way the insurance coordinator had said “problem” I knew she meant “drug problem” and I was determined to get to the bottom of the situation immediately and find out who was slandering me and why.

I had been going to the same pharmacy for over three years. I know everybody there personally and they all assured me that they would never do that to me. They all know my case and if anything ever did concern them, they would call me and talk to me about it.

So I called the insurance coordinator and asked her again what she meant by that statement and who said it. First she said it was potentially “the insurance company” and then she changed her mind and said it was “a pharmacist.” Then she told me it was actually none of my business to know!

I informed her that it is my right to know if I am being flagged for something and to find out where the flag is coming from. She said that she would find out and get back to me. I asked her for her last name and she immediately hung up on me. After that, she refused to take my calls. If another staff member answers, they say that she is on the other line.

If she made up that statement to satisfy her own need to play God in the lives of others, or as some self-righteous judgment on me for my appearance, I won’t stand for it. I am sick of the harassment, slander and emotional abuse I go through just trying to fix my pain. It is people like her who help damage a chronic pain patient’s quality of life.

I am going to live with this awful disease for the rest of my life. I will lodge a complaint with HR, her supervisor, her supervisor’s supervisor and every news reporter that I can get in contact with to have this set straight. And I will continue to do that to every professional who plays God with me because of how I look and what I suffer from. I need freedom from the harassment. I am searching everywhere and begging for help to get the pain management that I need.

This is only one example of my being treated this way. Just because I am in pain does not mean I do not know my rights and will not stand up for them. I am not a second class citizen. I do not deserve this treatment.

I have been hearing horror stories from other people who are in pain. It’s awful because many of these people suffer from diseases that leave no physical trace. They look healthy. People have a hard time believing that they are actually in pain because of this. Mine happens to make me look like a drug addict, which makes it even harder for me to get the help, acceptance and understanding — even from other pain patients. People think I’m just another addict who abuses the system.

I am a gentleman. I am a father. I have a voice. I have rights.

12_7.jpgStephen Nowak lives in Sacramento, California.

National Pain Report invites other readers to share their stories with us.

Send them to editor@nationalpainreport.com

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that! It is for informational purposes only and represents the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

Authored by: Stephen Nowak

There are 20 comments for this article
  1. Brenda Alice at 11:36 pm

    Thank you for sharing. It’s almost impossible to get treatment in a ER if you have chronic pain that is documented. Pharmacies are discriminating and refusing to fill legitimate prescriptions. I have been a chronic pain patient for over 8 years. No problems with treatment until a year ago when I went to many pharmacies trying to get my legal prescription filled. I am not a criminal and for 8 years every 30 days I have made the hour long trip to get my medication. How can the government justify suffering and determine what doses I need. Why should any police officer at any traffic stop have the right to get my medication records for a year? I did not ask for this life which has me from a professional to poverty. My medication allows me to leave my bed for short periods but doesn’t take all the pain away. I have tried all sorts of alternative treatment too. I pray that you get the help you deserve and someone will have the sense to get the illegal users and stop the discrimination against the disabled, the specialists and force pharmacies to fill legal prescriptions. I was flagged in the great discriminatory state of Tennessee because of dose, blamed for seeing different nurse practitioners at the same office (no Dr shopping) and going to different pharmacies when the one I used for 30 years CVS refused to fill or even order. No line to explain why their conclusions are for a reason. Thank you for speaking out.

  2. Rachel at 9:18 am

    PS Norco is bad for teeth too. Maybe talk to doctor to help find another option. Or find an herbalist in your town to find other options to healthy ways to relieve pain. I’m in the midst of that myself.

  3. Rachel at 9:16 am

    I posted your story on my Facebook. This world is full of vanity which hurts those who don’t seem to look like what the world calls beautiful. God made us in His image. And He doesn’t make junk or mistakes. You are not alone on perfect teeth issues. It’s a real shame the dentist industry is so costly. I grew up with 100% coverage. The dentist was terrible, and I feel he looked hard to find something to make money. And even now I wish he hadn’t encouraged my family to do so much and to remove my wisdom teeth. My back molars are all just about gone from all the damage from that dentist. I know others with similar issues. The difference is they had the wisdom to grow in after pulling out the molars. Me, I have a hard time eating. Thank God he didn’t full with my front teeth. My children have a different option. I do no dentist unless they have pain which none do. I then have their permanent teeth sealed. I learned that we can make decisions not only about our teeth but our health and more. I am hoping to post my Arachnoiditis story here soon.

  4. Michele at 10:18 pm

    Stephen,

    I know what you are going through! Please be strong and don’t give up hope! I was diagnosed with Systemic Lupus, Fibromyalgia, rotator cuff tendinitis and a torn bicep tendon, a herniated disc in my L1-L2 and I have been getting prescriptions from the same pharmacy for 5 years and every 6 months or so a new person will come in or a new manager and they will “lose” the prescription or blacklist me and make me wait a week without my pain meds. And they are one of the only places who takes my insurance. Plus the doctors and the receptionists usually treat me like crap because they think I am an addict also. Until I finally found a quality Dr. It is still a struggle sometimes with new people and misunderstandings. Like right now I don’t have my pills because they aren’t giving me my meds because of some “rule” which wasn’t there the last 5 years, but anyways, patience and complaining will get it fixed. And strength of course which I know you have too! Things will get better, just remember you are not alone. We are with you.

  5. BL at 5:14 pm

    Stephen N , Doctor Shopping is defined as going to different doctors for the purpose of obtaining prescriptions for controlled substances and not informing the doctors that you are seeing and getting prescription from that you are also seeing other doctors and getting the same prescriptions from them. The info at the link below tells which states have Doctor Shopping Laws.

    What are Doctor Shopping Laws? & States with Doctor Shopping Laws-
    http://www.cdc.gov/homeandrecreationalsafety/Poisoning/laws/dr_shopping.html

  6. Myron Shank, M.D., Ph.D. at 12:13 pm

    Stephen N, it is sad (but true) that patients with chronic pain must endure neglect and mistreatment, because “doctor shopping” has been stigmatized. What, indeed, is wrong with “shopping” for another physician, so long as records and care are both clearly transferred? Absolutely nothing.

    There is little ethical difference between a physician at a “pill mill” and one who simply ignores chronic pain. Both treat patients as mere numbers. Whether those “numbers” do or do not receive any particular treatment is a business decision, not one based upon medical histories, physical examinations, diagnostic procedures, or consultations.

    I hope that you find someone who not only can help control your pain, but, even more importantly, listens and cares.

  7. Stephen N at 9:25 am

    Rosalyn, Robert, Hanson, Mmcgowan, thank you so much for sharing your experiences with all of this. I am afraid to think about what I’m up against trying to help help in my situation.

    Sometimes the pain is bad enough that I can hardly get out of bed. It sucks the life out of me. Finding the energy to write, read and try and figure out what to do about this situation is so hard. I wonder if that is part of the reason we are walked all over. Because many of us lose motivation to keep fighting from being in pain. I just want to find a doctor who listens to me but I’m afraid to switch doctors even after six months or so because I’m afraid to be considered “Doctor Shopping”.

  8. Rosalyn at 6:52 pm

    I have Ehlers-Danlos Syndrome which is a connective tissue disorder that causes widespread pain. I’ve been on pain medication since 2008, when I lost the use of my legs for 8 months and in return – the use of my wrists and one elbow permanently.

    In 2010 I underwent a wrist fusion. At the time my pain was only being managed by prescription coming from all over for Percocet. I was begin to go to a pain clinic but no one was listening. So after my surgery my pain was so severe I cry when I think about it. The pain control was incredibly insufficient and any requests for adidditonal medications were met with hostility and even an intervention at one point from the surgeon and the nursing staff.

    I was terrified. I had just had a baby 6 weeks prior and I had fought the staff and hospital like crazy to breastfeed during recovery, going all the way to meeting with the head of anesthia with my IBCLC with me. They made it sound as if they were going to take my child from me, so I suffered through horrendous pain. For a week straight, I laid in bed at home (being released the day after my surgery. Look up wrist fusion with metal plate and screws – not rod) for a week without being able to move because the pain was so horrendous. I wanted to die. It was awful, and I knew in three months I would do it again for my other wrist.

    During recovery my doctor finally agreed I needed a pain clinic, and my world changed. My pain doctor was amazing! Not only that but he told the hospital they had to put me on a dialudid pump and nothing else, his orders. He was to control the dosage, allowing me more than they would have given me because he understood. That recovery was amazing…at first. I began to get harassed around the clock by nurses, who told me I was a bad mother for breastfeeding (can you believe I had to re fight the hospital for the right to breastfeed a second time? They didn’t remember or change policy after the first time and was shocked that I was still insisting), that I was a drug addict. My kids were all going to be drug addicts or retarded. That I was a bad person who didn’t deserve kids. Etc. constantly. To the point where I checked out against medical advice because I couldn’t stand the harassment any longer. I went home and tried desperately to control my pain with the medication I was on from my pain clinic for my every day base line pain, as the doctor refused to give me additional pain for the surgery I just had, saying I was already on enough pain killers and he wouldn’t help my “problem”.

    I was supposed to get the metal plates taken out 9-12 months later but I haven’t. It’s been 4 years. I’m afraid to get it done because of the harassment.

  9. Robert Gehm at 4:28 pm

    I also have Ankylosing Spondylitis. My teeth , at least the worst condition teeth were removed and replaced with partials. Now one of the anchor teeth are becoming very sore. I have been going around in circles with obtaining my pain rx. Lately, I will pick up an rx and take to the pharmacy. Pharmacy says insurance wont pay for 3 opana a day which I have been taking for 6 months before problems obtaining 3 a day started. Pharmacy says Medicare will not cover 3 a day and will need an prior authorization. Pharamcy says they are waiting on dr. dr. says they are waiting on medicare. I cannot get anyone at Medicare to talk. Finally about a week later, pharmacy says they just got the authorization from the dr’s office and rx is ready to pick up.During the week of waiting, both the dr’s office and pharmacy will deny having had any communication with the other and deny getting a fax with the authorization on it. Any help is appreciated but I am ready to find legal help along with some documentation I was able to obtain. I do know what this approach will most likely result in, red flagged and a tendency to be difficult because I wont be quiet and sit quietly in pain.

  10. mmcgowan at 3:10 pm

    Well done stephen for standing up for yourself!I have arthritic flares about 5 times a week and was denied treatment that I was eligible for by a renowed professor who once said tome”what can I do”and ignored all my calls to his so called pain management clinic.i reported him and my compliant for waitnig over a year for anti tnf therapy was upheld, like you his secretary told me I had a mild illness and he sneered at me once when I begged for a steroid injection saying they make you bloated knowing I was over weight!comments from non medical staff are so upsetting at a time when kindness and compassion are whats needed not ridicule!

  11. m.Hanson at 2:39 pm

    I have had same experience non of my problems are visible 2compressed vertebrae 1herniated disk a deformity in both feet called hallx varus and fibromyalgia and sero innflamitory arthritis!I have been suffering for 15 years I am a single mother I went from working 60 he’s a week for 15 years down to 2days aweek 8 hours each I could barely walk at the end of shift but still went to work now I am worse as I am aging faster than most my body feels like 90 year old and I am only 52! All I want to do is survive and keep a roof over my children’s head so now I will try to sell jewelry online!pray that works!I had been using one big name pharmacy for 7 years one night I was up late making a huge pan of lasagna it was 11:30 at night I decided to go get my prescription filled because they were open 24 only one of Walgreen’s was open 24 he’s but they are all linked together by computer on the computer he had access to my full 7year history but this pharmacist refused to look and said I must speak to your doctor it was 1130 he certainly could not do that I have been getting exact same meds forever with them once a month he refused to fill them I naturally got upset because I also have chronic fatigue and have to build up enough stamina to even dress to go to store so I knew I would have to do it all again when I did return to my usual Walgreen’s the pharmacy said the other pharmacist had red flagged me! I explained to her what happened then she was able to remove it totally discrimination if you ask me this is how the sick person is treated in this country I think it is against the disability act that was passed in I think 1960! I think there should be a discrimination law suit I have no criminal record I should not be treated like one these are my medicines not my drugs they only take the edge off enough to make me want to live and continue to endure pain every single day until I dye be thank full if you can walk around and play with your children because I couldn’t all this is horrific they have enough things in place to stop people abusing if you are in complete compliance with your doctor you should not have to go through this !drug tested every month for dosage it has to be correct not to high or low they can tell by one millionth of a milligram I have always been in compliance for 15 years what are they basing their opinions on these pharmacist I know what it is based on how they visualize you and it is there own personal opinion at a glance! So unfair!

  12. Kimberly Kay Miller at 10:29 am

    Stephen,

    I am horrified at what you have had to endure. This is the kind of thing that I have spent all of my time fighting against because the way pain patients are treated in this country is simply unacceptable. I have had my own issues, but nothing compared to yours. You, my friend, are being stomped on by the system. It’s way past time people in pain rise up and take back their basic rights to be treated adequately and to be treated like a regular person, not a drug addict.

    Here’s to more positive results in the future and may we find some way to stop this madness where you can be denied care and nobody even has to tell you WHY.

  13. BL at 3:10 pm

    Kurt W.G. Matthies, having these rights on paper doesn’t mean that you can take them to your dr and expect them to treat your pain.

    In the U.S. I think people often confuse having Rights, like the Right To Vote, which is Law in the U.S.with statements that organization agree on and draw up. There are no Laws that state a dr has to treat you for your pain or adequately treat you.

  14. Stephen N at 2:54 pm

    Thank you all for your input. It is greatly appreciated.

  15. Kurt W.G. Matthies at 2:39 pm

    Dear Stephen, leaders in the field of pain management and pain research agree with you — you do have rights.

    In 2010, the International Association for the Study of Pain (IASP) released the Declaration of Montreal, that states it like this:

    Access to Pain Management Is a Fundamental Human Right

    I recommend that you and all chronic pain patients read this document. It’s not long-winded, but straight to the point.

    http://www.iasp-pain.org/Advocacy/Content.aspx?ItemNumber=1821&navItemNumber=582

    Best wishes with your upcoming procedures.

  16. Myron Shank, M.D., Ph.D. at 2:25 pm

    I applaud you.

    I do not know whether or not it would be helpful, but you might consider contacting your state insurance board. I would also consider speaking with your state representative.

    Of course, calling attention to yourself could backfire, but I suspect that you and your physicians have already been flagged to your state. If every patient with chronic pain would be as bold to make their stories known as you are, maybe the current war on patients in pain and those who provide appropriate care for them would come to an end!

  17. Mary Ann at 12:05 pm

    Stephen. I am so sorry to hear what you are going through. I hope your teeth come out nicely and your pain to a minimium.

  18. BL at 11:09 am

    Since you’re getting Norco from different dtrs, that is more than likely the reason yo have been flagged. It may have been by the insurance company. The insurance companies are on the look out for red flags. The pharmacist you deal with may know your situation, but I’m sure that pharmacist isn’t there every minute the store is open. So someone else could have flagged you. I doubt you ever get a straight answer from anyone about it.

    As far as anyone having a right to have their pain managed outside a hospital setting, there are no such rights. An individual thinking they are entitled to the management of their pain, is that persons opinion and nothing more. I wish it were different, but it is not.