My diagnosis: Spinal Stenosis, Spondylosis, Spondylolisthesis L4-S1, Osteoarthritis, Degenerative Disc Disease.
I am a 41 tear old woman with a spinal condition that causes Chronic Pain. I was first diagnosed in November of 2005. I was without health coverage, unable to afford treatment, until September 2015. Life as I knew it was over, I could no longer do even some of the most basic activities. I lost my ability to work, as well as being less able to care for my children and our home. I had no other alternative, during that 10 year period, other than treating myself. I did so by utilizing the Stretches taught in Physical Therapy, OTC Topical Creams, Lots of Advil, Marijuana at bed time, and the occasional use of opioids when absolutely necessary to minimize my pain level. I did not waste time going to urgent care or the emergency room, because back pain is not considered a serious matter and those places are not intended to offer that type of care. Most days I wished for quick death. A life of every day debilitating pain is no life at all.
My only hope was, that one day I would be able to get health insurance, so that I could go to a real doctor who could hopefully work toward improving my condition through more intensive measures, ie. surgery. I was so excited to see the doctor the first time that my usually low blood pressure and resting heart rate was at an all time high. I was giddy at the idea of finally being able to get help. I was ready to turn my care over to him completely. If he had told me to dance a jig while eating gummy bears I totally would have followed his advice lol. I made the mistake of being completely honest with my new doctor. I gave him the list of my diagnosis along with a list of how I had been treating myself. I had hoped that this transparency would allow me to build a relationship of trust and solidarity - I was wrong.
This doctor didn't say two words against Marijuana but was highly upset that I had been buying my meds on the street. I explained that I only took them a few times a month - only when I absolutely had to. I had a logged calendar with all of my pain levels each day as well as any time I had taken medication - he was not interested in seeing this chart. I explained that I felt at the time that I had no choice given that I was unable to afford treatment without insurance, but now that I had a doctor I was ready to turn my complete care over to him.
My new doctor did prescribe me some very low dose opioid pain meds and a muscle relaxer. He was aware that I ingest marijuana before bed and did not request that I stop even though it is not legal in Indiana. I was signed up for multiple clinics and sent on my way. My Xrays and MRI both came back to confirm my previous diagnosis as well as showed the serious degeneration of my spine in comparison to my 10 year old MRI films. So it was obvious to everyone involved that I did indeed have several conditions that cause chronic pain. I was determined to follow my doctors treatment plan, but the treatment I received was not what I had bargained for.....
I took the meds exactly as prescribed,(percacet 5/325 - 3x's a day, everyday) while continuing to do my stretches and exercises. I had a non-pain related issue (cold sore), so I called to request a prescription for valtrax to treat it. They shut down my request on the phone telling me they would not give me another prescription. I told them it made no sense since I was asking for a antiviral medication which had nothing to do with anything concerning my pain treatment. Finally the following day they called to tell me they had changed their mind and my prescription would be filled - which by then didn't matter as my cold sore was already full blown and the meds would be of little help at that point. So be it.
I had a flare up and went to my doctors office to request a cortisone shot (it is an anti-inflammatory not an opioid). I could barely walk and was in tears from the pain. Before I could even complete my verbal request I was confronted by the nurse at the desk with a very loud and rude refusal, saying they would not give me a prescription. I was literally standing there with my little bag of refills in hand. I repeatedly tried to explain that I didn't need a prescription that I simply wanted a referral for a cortisone shot. They were not interested in hearing what I had to say, all they saw was someone asking for drugs, even though I had specifically said I was not there for that. Finally, they told me to have a seat in the lobby and they would see me as soon as they could. They left me sitting there until after closing only to come out to tell me that they had forgotten I was out there and I would have to come back the following week. I asked if they could refer me to the ER or Urgent care for assistance and again they went back to saying that I could not have more pain meds - NOTE: I had not once requested any additional pain meds.
This was par for the course over the next few months. No matter how far removed from the subject of pain management, they always seem to circle back to assuming I am seeking more drugs. I have never in my life been treated with such disregard and disdain!
I finally get into see the first of 2 surgeons. The news was not what I had hoped for. 10 years prior I was referred for surgery but I lost my insurance before I could get in for the procedure. Now, due to the progression of my condition, I was told that I am no longer a viable candidate for surgery and would have to enter long term pain management as my only option. Long term drugs and lifestyle changes. I was devastated. I have no desire to spend my life dependent upon a pill to get me through my day. I expressed my disappointment to my doctor, while he claimed to understand, there wasn't much he could do about it.
Shortly thereafter, I went for my first class of Integrative Pain Management Therapy. I was psyched to get started. Much to my dismay it was not what I had expected. I was now required to spend a couple hours 2 days a week, in a room full of strangers. The class consists of 20-30 minutes of stretching and range of motion exercises. These are the same exercises that I have been doing for a decade, so at least I was good at it! Then we have 15 minutes of Meditation - I am Pagan, so I already Meditate every day at home. The remainder of our time in class is basically spent Counseling us all on drug addiction and depression, and telling us that life is pain, suck it up and get over it. Everyday we are told that we are just depressed drug addicts, and reminded that attendance is mandatory. If we fail to attend they will pull our pain meds.
Later that week I was given a contract to sign. The conditions of said contract were a bit extreme - had to promise not to go to any other doctors or pharmacies, not allowed to request a change or increase in my dosage, no alcohol ( I do not drink so that's no problem) or illegal substances (I had been honest with my doctor about my marijuana use and since he had never said anything about it I didn't realize that it would pose a problem down the road), not allowed to refuse treatment recommendations, mandatory attendance to all classes and appointments, mandatory drug tests, mandatory pill counts yada yada yada.... I was given a drug test to get my prescriptions. I didn't think I would mind it, but when it happened i felt violated. I am not a criminal or a deviate but it made me feel as if I had been accused, judged and convicted on the spot. I only went through with it because I had no other choice.
A couple weeks later I had my first epidural nerve block. It was partially helpful - I no longer have radicular pain in my left leg, but it did nothing for the pain down my right leg, hips or the pain in my L4-S1. Any relief equals success in my opinion, so I am looking forward to my next injection. This caused me to miss 2 classes. Upon my return to class, I was informed that we were only allowed one absence and I had taken 2 - even though when I had called they had told me that both missed classes would be excused. Now they are saying that I will be dropped and my pain medication will be pulled if I miss another class. I have upcoming appointments that would take months to reschedule, I had to choose between those pointless, demeaning classes, or keeping my appointments with specialists that had been scheduled months in advance. The PM contract puts me between a rock and a hard place since I am not allowed to miss either class or appointment.
Later that week, I went in for my refill and was informed that my recent drug test had come back positive for THC. I explained that my doctor was aware of the fact that it would be in my system. They went on to tell me that since it was an illegal drug that any more positive drug tests would result in the restriction and loss of my pain medication. I understand that it is not legal in Indiana (yet), but the truth is, it is the only thing that really helps with the pain. The medication makes my stomach hurt so bad but barely does a thing for the pain. If forced to choose between the two, I would rather use marijuana, which is all natural/organic, as opposed to some chemically altered substance.
The build up of the past four and a half months has led me to the realization that there is no longer any Care in Health Care. From day one I have been treated like a drug seeker, even though I never wanted the drugs, I wanted surgery. They refused me surgery and offered me drugs. Those drugs come along with so many strings that I am simply unable to meet the conditions in order to continue in the program. I had to sit down and consider all of the pros and cons. Are the benefits worth the cost - not just to my insurance, but the cost of setting aside 2-4 days a weeks towards my treatment, travel expenses, and the toll their treatment was beginning to take on my mentally.
I added up the time and expense invested on my part. In just over 4 months, the bills amounted to almost $25,000.00, and with all that money spent I hadn't really been helped much at all. Who is benefiting from all of this? It certainly isn't me! Everyone is getting paid but little has been done to improve my condition. With as much as they have charged me, the very least they could do is treat me with decency, compassion and kindness, instead of treating me like an inconvenience and a criminal. Instead, I am given worthless medication that causes more problems than it solves, while I live under the constant threat of losing those medications, as if they are dangling a carrot for me to chase.
After much consideration and discussing my options with my husband, I have decided to drop out of pain management. I tell myself that I survived for 10 years without their sorry assed treatment. Looks like I will go back to treating myself via google,  , and buying my medication illegally. Maybe I should take up drinking? I don't know what else to do at this point. It would be different if I actually felt like they intended to help me with this condition but every single time I am treated with callousness and disregard just makes me feel worse than I did before all of this began. I feel like they have done nothing more than wasted my time and destroyed any ray of hope that I may have had.
I spent 10 years, hanging on the hope that if I could just get into a real doctor that they would help me. I know now that this is not going to happen. I am 41, other than having a bad spine and severe arthritis, I am the picture of perfect health - not even high blood pressure, cholesterol, or diabetes. The women in my family tend to live well into their 90's. The idea that I may have to live another 40 - 50 years in pain, with no possibility of medical treatment is terrifying. I do not know how long I will be able to force myself to continue with such an existence. Not trying to sound melodramatic but if I were a horse, they would have shot me already......
Lumbar Spinal Stenosis with Synovial Cysts
Diagnosed 2006 at age 31