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“Big Changes Coming and Nobody Gets To Mess WIth Me Any More” a rant about pain, frustration, and time lost

This blog post is not typical of what I write, but more of an accounting of time that led me to a decision of great importance. I have been on a strange journey and now, as I am looking back at it, I am suddenly aware of a new set of lessons. Let me just begin….

Some back story, in case you have not heard me blather endlessly about my current and frustrating situation… I have some health challenges, and one of those challenges is Chronic Pain to the point of disability. It touches and controls every aspect of my life, and I have become more limited and secluded over the last decade. Fibromyalgia, Arthritis, Degenerative Bone Disease, Chronic Fatigue Syndrome and PTSD are my diagnoses, and for this, I see a Pain Specialist Physician among others. Because of the pain and the symptoms, I have, over the years, been prescribed a large variety of medications to try to keep the symptoms at bay while allowing me to do every day things, like get up from a chair, or sleep. Some of these medications have worked better than others. In addition to the medications, I must have injections in my neck, back and knees. Without this combination of treatments I would not be able to walk at all and what I am able to do in the course of a day is simply not enough.

Over the last year I have become dissatisfied with the status quo. Anyone would be dissatisfied. I have disintegrated into a shadow, lost my career and income, and my ability to do almost everything that I enjoy, physical and otherwise. Thinking and focusing has become a challenge equal to walking or driving. I do nothing well any more, but I digress. During the monthly trips to the doctor for meds, I began voicing my desire for change, to try something different to see if I could feel even a little bit better. It was decided that I would begin the process of consideration to have a pain pump surgically implanted in my body to deliver narcotics directly into my spine at intervals that would eliminate the ups and downs of oral pain medications. I was all for it, so the process, the slow process began.

First, I was cleared by a psychologist. They want to be sure that you are a stable person, and not suicidal…. Think about that… I don’t want pills. I want an implant to eliminate pills… the things that come in large quantities… in exchange for a medication whose delivery is completely out of my hands. This should have been my first clue. It took a couple of months of waiting before I could get an appointment to see this psychologist, and I easily passed his scrutiny. I could now see the surgeon. I waited several months, patiently, to get a referral and I don’t know why it took so long and I will not speculate. When I went to my appointment in mid-November of 2013 to have my pills counted, to pee in a cup and get new prescriptions, I was told that the referral was being made, finally, and I should be hearing from the surgeons office shortly to make the first appointment to see about the pain pump… what I hoped would make my life better. The waiting was driving me crazy.

Two weeks went by, and I called my doctor’s office and was assured that I would be getting a call “any day now”. I went to my medication appointment in mid-December, and asked again, why in the word I had not heard a word about something that was so important to me. My life and my mobility were slipping away. Why didn’t it matter? I was told a call was made, and that my file was on the surgeons’ desk… the time was near. I gathered my prescription refills like I do every month, made my appointment for January, and away I went on my hour long drive home feeling discouraged and tired.

Jump forward to mid-January. The day of my appointment is nearing and I am suddenly greeted one morning by a severe pain in my left eye. It is Iritis… for the second time. Iritis is a special little problem… you see, your body decides that your eye is a foreign body and tries to get rid of it, and the only way to take care of it is by using a series of eye drops every HOUR to keep your eye from being destroyed, and going blind. It is NOT a fun thing to deal with and it takes months for it to go away. All the while the affected eye or eyes are quite blurry and uncomfortable. So, I call my pain doctor’s office to see if they can send the prescriptions through the mail this month since I am having trouble seeing, and have no ride to bring me… plus I need to see the ophthalmologist and a blizzard is coming. Well, NO they say. The doctor needs to see me, they say. I must come to Asheville, they say. So, I am thinking that maybe it is something about the surgeon. Maybe there is some compelling reason that they want me to drive an hour to their office, with my vision diminished by a considerable degree. So I go.

I arrive at the designated place at the designated time, and I wait. Finally I am called back and I sit down, my vitals are taken and I wait some more. The doctors’ assistant comes in. The doctor is way behind schedule and can’t see me. I think to myself, “I drove all the way here, with the snow starting, not being able to see, and the doctor doesn’t have TIME for me? REALLY?” I am so angry that I forget to ask about the surgeon. I take my prescriptions and head for home through the snow. I go to Candace’s office to trade my car for the truck so one of us can get all the way home, and if needed, I can come down the mountain on our ATV to bring Candace up to the house if she needs to park the car on the road below. I leave the prescriptions with her to drop off for me. Driving or just riding in a vehicle is one of the most tiring and painful things I do these days. I used to love to get in the car and go. Now, I dread it, and pay the price with days of increased pain just to go to the store, a friend’s house, or a doctor’s appointment.

Candace drops off the prescriptions for me as she does so faithfully every month. (It is one of dozens, maybe hundreds of things she does now that she shouldn’t have to do for a 54 year old woman) She tells the pharmacist she will pick them up at the end of the day. As this takes place, I am at home sitting in front of the fire, heat pack on my neck, still paying for the drive to town and fuming about the BS that I deal with every month just to stay somewhat ahead of this damnable pain. The phone rings.

I answer and it is the pharmacy calling to inform me that I am unable to pick up my prescription medications today because the doctor(or rather the charming assistant) has made a note on the prescription not to fill one until the following Monday, and the other, four days later. WHAT? WHY? She does not know. I do not know. This is something new and I feel myself flush with embarrassment. It feels dehumanizing and degrading. I feel like some sort of criminal. An addict. Someone who can’t be trusted. I hang up the phone. I feel awful. I call Candace to tell her that there is no reason to return to the pharmacy today, and then try to call my doctor’s office. Too late. They are closed for the day. It is Thursday, and they are always closed Friday and the following Monday is MLK day. My pills run out on January 19th. I can’t get them until the 20th, and there is Nobody. To. Call.

I suddenly understand something. I am controlled completely. Someone with a pen and a snotty nose controls when I come and go, and makes me jump through hoops to be able to take medication that I hate… that I only take because nothing else has worked. Suddenly, I am done. Nobody gets to fuck with me like this. I will go through the horrible withdrawal from Oxycontin. I did it when the FDA suddenly snatched the Methadone I was taking off the market. I did two weeks of hell withdrawing then and I can do it again. Death has nothing to scare me with. Pain? Yeah, I live with it every day and have lived with it most of my life, so fuck you, doc. I will take no more of your pills. I will not pee in a cup. I will not come running at your whim.  I. Am. Done.

I am terrified. The change is big and I could very easily end up worse than I am right now, physically, but as I see it I have no choice but to try. Lots of pain patients have patches on their skin, or take alternative treatments and that is what I want. That is what I will have or I will find a doctor who will treat me like a person and not suddenly, after many years throw me a curveball that hurts my spirit. Go ahead and punch me in the mouth, but don’t you dare treat me like some sort of criminal, not allowing me to pick up my medication until the previous one runs out. You FUCKER. You did it, and you never said a word to me. First do no harm….  ?? Oh, and forget the pump implant as well. HAH!

So, I have reduced my daily intake of medication for pain by one third on my own, and when my appointment rolls around in February, I will march in and give them back whatever pills are left, and I will begin the trial of complete withdrawal from narcotics for the last time. I will choose the next course of treatments, and I will decide what is best for me and my illnesses from now on. I will continue to try new things until I find a way to be able to enjoy my life and do at least something that I enjoy. Right now, I observe. I exist. I suffer. It is not good enough, and from now on, the future will be in my hands and not in a bottle, or at the hand of anyone else. It is going to hurt. It is going to take time, and I may fall, but I am going to keep going and keep trying to have at least part of my life back. I am a warrior and I will never give up. Never.