Nowhere To Run



Going to the doctors office has never been one of my favorite things to do. When I was 5 years old, I filled my suitcase and “ran away” because I was afraid to get my Kindergarten vaccines. Now, I’m all grown up and looking forward to retirement; but I’m still that 5 year old deep down inside, more afraid of doctors than ever before. Why do they have so much power over us? Why do some use that power to make us feel inferior? Eleanor Roosevelt said “No one can makes us feel inferior without our consent”, but I feel it and I don’t remember giving anyone permission? We are living in difficult times for anyone who has debilitating, intractable chronic pain. There also is no place to “run”, no matter how big your suitcase is or how much money you have. There’s no grandparents at the other end to scoop you up and tell you that “it’s going to be OK”. Mostly, because it’s NOT OK.
Have you ever seen an action/crime movie where an innocent person was being tortured and/or thrown in jail, for something they did not do? A person being “beat up” but totally innocent? This is what is happening to the chronic pain patients in America today. I’m going to share a short story about what happened to me the other day. We always think these things only happen to “other people”. That “it won’t happen to us”. That is wrong and untrue. We live in a civilized nation, or do we? How can they treat us like this?
Here is a summary of what happens to me every 30 days. Each time I have to visit the pain Dr.’s office, I get physically ill, worse than usual. A few days prior to my upcoming appointment, I get more frequent stomach aches. I want to stay inside more and just sit in my “Lazy Boy” chair, with my blanket and with my cat cuddled up next to me. I wonder if “this will be the visit that “it” happens to me”? As the appointment time gets closer, I get more clingy to home and all things comfortable to me. A fear deep inside of me grows worse and worse. Then the morning of the appointment comes. I get nausea, dry mouth, diarrhea and I don’t want to leave my house. I cannot leave because no matter how much I talk myself out of these feelings, they won’t go away. My blood pressure, which has normally been low to normal, is very high for me at about 150/95 to 155/100. I feel sick and afraid. But I’ve never smoked anything and I have never taken any kind of medication or “drug” that was not specifically prescribed to me by a licensed physician.
The time of the appointment grows closer and I get even more distressed. Sometimes I cry and I just verbalize to my husband that “I don’t want to go”. I wonder why is life so cruel to those who are already living with agonizing pain and illness? I’m not one to feel sorry for myself. I really trust and like my pain Dr. too, don’t get me wrong. But I know he’s not my “friend”. He has heard every excuse in the “book”. He has no reason to believe anyone and he must go by what he sees in text. All day long other people have ruined it for the “good patients” who don’t deserve this kind of questioning, contracts and treatment.
It’s time to leave the house. But I cannot leave the bathroom. I take a bucket with me because I don’t want to vomit in the car. It’s a 30 minute drive and my painful RSD/CRPS feet are shaking even though they hurt. I cannot control it. My husband chuckles, kindly telling me that I’m “shaking the entire car”. We arrive at the pain Dr.s office. There are cameras everywhere, in the parking lot and in the office. For all I know, theres one in the restroom? I know that I left a urine sample last time, so I feel pretty calm about that not going wrong. I had not heard from them, so Im just sure that there’s no “false positives” with me. That only happens to other people, right?
We sign in at the front desk. I answer the several questions that I am asked every 30 days now. For crying out loud, what changes in 30 days? It’s just too often to put people through this, aside from the cost. My name is called and my stomach is in knots. I’m sweating and sick to my stomach with my heart is pounding. I feel afraid and “guilty”. I hear the footsteps faintly coming down the hallway and then a knock at the door. I calm my inner fears and I tell myself “Suzanne you are a good person. You’ve never done anything wrong and you follow the directions exactly. This is crazy, why are you so afraid?” I’m afraid because of the horror stories of others who are also innocent. The pain Dr. enters the room and asks me the same questions each month. Every 30 days, the same dialogue. But this day I hear different mantra than usual. I feel as though I’m in a tunnel as I hear these words “Your urine test came back positive and I had to send it out to another lab. In case you wonder when you receive a $200.00 or $300.00 bill from an outside lab. I just wanted you to know.” I started to cry and then I was asked “why are you crying?” Next, I was informed that no matter how long he’s known me, if the test had ben positive, I would be kicked out of the practice with no place to turn. Innocent or not, I would have been “guiilty”. It doesn’t matter that these tests are many times false positives and false negatives. Nothing matters anymore. The truth doesn’t matter any longer. I was literally terrified just hearing those words come out of his mouth. I asked him “What could it be positive for? I did not do anything different?” He proceeded to tell me that I tested positive for PCP and Oxy-something? But I don’t take those! I don’t even know what “PCP” is? I had to ask and he did not answer. He could not understand why I was crying uncontrollably and inconsolably.
We had received a $265.00 bill from a lab just a few days prior. We were going to call because we thought it was a mistake. Now we are supposedly responsible for this very large bill. I never signed anything promising to pay for all of those tests? But what happens if I fight it? Next time there is a “false positive”,they won’t perform the tests, therefore I won’t be exonerated and I will be kicked out for no reason whatsoever? It was explained to me that no matter who I am, how exemplary of a patient I might be and no matter how long I’ve been going there with a perfect “record”. I will be treated as if it were my first visit and there are no second chances. We are perceived as “guilty, bad and lying” if the tests says it is so. Yes, there is a second test, but then you are hit with this grossly overblown bill and there’s no way to pay for it. The second test, of course, came back negative and I was exonerated. He told us that his regular office urine test has a “90 to 95% accuracy”. So that means every once in awhile there can be a glitch or a mistake. That means that every once in awhile someone gets hit with this huge bill, through no fault of their own.
I am tired of people telling me that I should not be on this medication. People who are supposed to love me or at least care about me. It feels like nobody understands the predicament we are in. I take medicine that still helps to relieve my pain even though I’ve been on it for quite awhile. I have almost no side effects and I’ve tried many many other medications and therapies first. This was a “last resort”. It helps and I don’t want to stop because it gives me some semblance of a life. I get the pleasure of being a grandmother. Without it, I would be in bed or in my chair 24/7. I’ve been there and done that. I don’t want to go back. I’m tired of being judged by people who don’t know me. I don’t get a “high”, and I never take more than prescribed. Why can’t I just continue to do what has worked for me? Why can’t we all? Why do we have to feel persecuted and judged? Why do we need to feel traumatized and terrorized every 30 days, to the point of feeling physically ill?
My story up to this point, ended on a positive note. My Dr. still had to send out the first test because he said that “it is the law”. I have never done anything remotely considered to be “bad” or “wrong” and definitely not “illegal”. I’m a good person who graduated college with honors. I raised my daughters mainly by myself for about 8 or 9 years. I worked full time and took care of everything and everyone who needed me. I try to be kind, thoughtful and I am always trying to think of new ways to help others. Nobody deserves to feel this way. Theres something definitely wrong with this and someone needs to fix it.

Opioids, Cannabis And Complimentary Therapies


When our Attorney general, Jeff Sessions told the pain community to take an Aspirin and tough it out; I hope he didn’t mean those living with cancer pain, A.S., CRPS, E.D.S. and many of the high pain chronic illnesses? I’m guessing that he must have meant that more for someone who strained their back by lifting a TV or a dresser that was too heavy? Maybe not? But that’s my guess. Along those same lines are “Complimentary Therapies”. In my personal opinion, if Acupuncture works for your kind of pain, that is great. If something called “grounding”, where walking barefoot and reconnecting with the earths energy can help your pain, thats wonderful too! Whatever works to diminish your pain, that’s what matters most. Insurance companies should be more than willing to pay for these complimentary therapies ahead of any major or minor invasive or noninvasive surgeries! There should be choices available to those who want and need them. But as much as mindfulness, guided imagery and “thinking your pain away”, are awesome ideas; I don’t think they generally help to curtail certain high levels of pain and pain illnesses.

Medical cannabis is helping many chronic pain patients with nausea, physical withdrawal symptoms and chronic pain. The Marijuana Effective Drug Studies (MEDS) Act, introduced by U.S. Senator Orrin Hatch (R-UT). He has proposed a bill, (S.1803) to encourage scientific research on cannabis as an effective and safe medical treatment. We need to advocate for this bill because Medical cannabis can be helpful to some people who live with chronic conditions. The U.S. Pain Foundation along with the American Pain Society support this Act.

We are fighting for a variety of methods to help those with high pain illnesses to deal with their pain. I’ve read that Kratom is another plant based fighter against chronic pain. These can be wonderful tools to help many persons. We need to keep fighting for many different methods to help with chronic pain, because we are all individuals and what works for one person, does not always work for another. Pain patients should be able to use whatever method of pain relief works for them because individual metabolisms vary. The therapies available to us, help many different kinds of chronic pain. Each method contains various medicinal qualities that work differently in each patient. It’s also true that one specific method of pain relief doesn’t help everyone. Nobody should be forced into taking or doing something that they don’t feel comfortable with.

The same is true with surgeries and injections. In my personal opinion, these continuous injections into the spine, are just “money makers” for the chronic pain clinics who are now too afraid to prescribe opioids. Even though the CDC told us that the 2016 guidelines

were just a “guide” and they are not the law. It seems as though the majority of pain clinics and Doctors jumped on the bandwagon to demonize opioids after the guidelines were disclosed. Now we are seeing suicides go up with the decrease in prescribing of Opioids for chronic pain illnesses. It seems as though there is a correlation between the lowering of Opioid prescribing and an increase in surgeries for Spinal cord stimulators, pain pumps and nerve ablations. But no one should EVER be forced into having an invasive surgery that could possibly cause more pain and stress for these already medically fragile human beings. My physical therapist told me that the SCS means surgically putting a catheter into your spine to give small electric shocks in order make you think of those shocks instead of the pain! She told me that our brain cannot think of pain and pleasure at the same time. I’m guessing that some think these electric shocks are pleasurable? I had a T.E.N.S. unit soon after my car accident and it did help with muscular pain and soft tissue damage, slightly. I have read that they’re (SCS) most helpful in people who have low back pain, leg pain or one area of pain and not multiple pain issues (http://aansneurosurgeon.org/features/neurosurgeons-rise-address-opioid-crisis-america/).

My previous pain clinic physician informed me that the intrathecal pain pump administers approximately 1/300th of the amount of oral medication needed to relieve high amounts of chronic pain. But this is also living with a literal “hockey puck” inside of your gut forever and and depending on one person to fill it! That same Dr., told me that I would be “married to him” as a patient, for life. In my research, I have found that if your physician leaves his practice, retires or if you have complications in another city/state or country; your pretty much out of luck, in all honesty! Emergency rooms and other physicians won’t normally touch another Dr’s patient with a pain pump! Again, this is another invasive surgery where your body is being cut and something is put into your spine. Complications stem from worsening pain to paralysis. Here is an article that speaks to some of the complications (http://www.stltoday.com/lifestyles/health-med-fit/health/to-your-good-health/implanted-back-pain-pump-is-an-option-for-very-few/article_474eed95-3f54-59ca-9b9b-9f8f941c0300.html). The nerve ablation or Radiofrequency Neurotomy, means literally “burning” nerves to “create a heat lesion”, thus, making the nerves lose functionality (https://www.spine-health.com/treatment/injections/radiofrequency-neurotomy-facet-and-sacroiliac-joint-pain). Each person feeling relief from chronic pain, is all that matters. We should be able to have choices available to discuss with our own physicians.

Someone who knows our past history of illness and our current diseases. A Dr. who can discuss these different methods with us and help us determine which route is best for each individual.

This past week I read an article in “Clinical Pain Advisor” (https://www.clinicalpainadvisor.com/treatments/epidural-steroid-injections-postmenopausal-women-bone-mineral-density-vertebral-fractures/article/739080/) that touched on the issues with the Epidural Steroid Injections. After having many of these injections in the first years following my car accident, now I find out that they cause decreased bone mineral density and increased risks for vertebral fractures. It appears that there are complications with every method of pain relief. We just need to be able to choose what is best for our own body. Nobody should be forced into surgeries, Acupuncture, Marijuana or Opioids. On the other hand, if one method, such as Opioids, have worked for you and you’ve literally tried many other methods of pain relief, then you should be able to continue. Taking a pill that has little or no side effects for a group of people who are doing well with Opioid therapy, should be still allowed and not demonized. I believe there will always be a place for Opioids for the relief of chronic pain. If you have been taking them for many years and are stable, then obviously you are not “addicted”. Don’t forget that there is a difference between addiction and dependency. Also, don’t forget to support the “Opioids and Stop Pain Act” (S.2260/H.R. 4733), introduced by Senator Schatz and Representatives Welch & MicKinley. The U.S. Pain Foundation, along with 30 other Pain organizations support this Act. It will provide $5 billion over 5 years for research of the NIH into the understanding of pain and the discovery and development of therapy for chronic pain.