Medicine bottles spill out of my cupboard, and I finally decide to combine the many prescriptions into fewer containers. One reason I do this is for my own convenience, the other reason is that I have been labeled a drug addict. I will try to keep my humor intact while writing about this (all too common) accusation and the mistrust that ensues on the side of both the pill-popper (me) and the finger-pointer.
I must give a little background information on my illness. Having suffered numerous pains (in my spine, neck, ribs, and chest) I was not given a correct diagnosis for several years. It was only when I moved to Europe that I found help. When my doctor in Scotland told me I had Ankylosing Spondylitis, he spent the time to carefully explain what had happened in my body, and that the disease was chronic or life-long. He said there were medications which could slow down the progression of the disease and help control the pain, but there was no going back. In other words, I was stuck with the damage that had already occurred. Every word he said made such perfect sense, but I didn’t want to believe him.
I was a professional ballet dancer, and over the course of five years I had lost the ability to twist, arch, and round my back. My neck would no longer move, and I was exhausted. Many of my joints had fused together, and my ligaments had shortened and become rigid. I thought perhaps I could have some of the damage lasered away, or surgically removed, but my doctor said it would all come back. The disease progresses because of an auto-immune reaction.
I went to the pharmacy to fill my prescriptions, and as I was not yet thirty, it came as something of a shock to be given several different bottles of pills. I had to have regular blood tests to make sure my liver and kidneys were not being damaged, and this made me feel like a very old woman. I couldn’t wrap my mind around this new reality, and I hoped that maybe there was some mistake. The American doctors were always saying I had stress fractures that caused the pain, some suggested I was imagining the rigidity, they had not helped me at all. I decided I would try the medicine and I quickly had positive results. I could do some “normal people” things like sitting through a movie, blow drying my hair, and walking without a limp. There were still problems and pain, but less tears for sure.
I want to make the point that nobody wants to be on medication for life. You wonder why and how this could have happened, you feel like a patient. How could you go from being a healthy twenty something to a senior citizen within just a few years? I suppose my coping skills are less than stellar.
So, I take four of one pill a day, two of another, one at night, and one for the really bad times as needed. During this time, I met a young woman with Addison’s disease, she was quite good-humored about the whole medicine thing, and I decided I must buck up and find the bright side of the situation. I did feel better, but I was heartbroken that my body was forever changed from a flexible dancer into a marble, unyielding statue.
When I moved back to America a couple of years later, I had to deal with the more forward nature of our culture. Among friends and family, we think nothing of opening a cupboard in their house to search for a snack or get a glass. This never seemed to be abnormal or rude, and only became a problem now that I had drugs. Curiosity was aroused by the various boxes and bottles situated in a formidable pile behind the spices.
We all like to put in our two cents, offer solutions to problems, and we regard this as a helpful duty. I listen. I often look at them with wide-eyed innocence while inside I feel like I am a thousand years old. All of their doubts are the same ones I experienced when first diagnosed and still in denial. My initial reaction is that I am far too worn-out to have to explain, apologise, or argue. I have to tolerate being lectured on things (both true and false) that I have heard about time and again:
- These drugs can cause permanent liver/kidney damage, ulcers, weight gain and fatigue. (So pass the mashed potatoes)
- There are diets that can totally cure your illness.
- Those doctors in Europe don’t know what they’re talking about, I’ve never heard of a disease called Ankylosing Spondylitis.
- If you still have pain while taking all that medicine, why not just stop, it must not be working?
Sadly, I could go on for hours.
Here is where I truly start my adventure with a so-called drug addiction.
In a heroic quest to save me from all of my shortcomings, someone made a list of all the medications in my possession. They researched each one carefully, met with their experts, and strategized how I may best be helped.
Around this time, I was in a bad marriage, had only recently finished a year of treatment for breast cancer, and in a span of seven months, had a hip replacement, was threatened with job loss, dislocated the hip replacement twice while at work, sued by the company I worked for, had a second hip replacement to fix an impingement problem which would cause multiple dislocations if left unrepaired, and feeling desperate physical and emotional pain so much so that I didn’t want to live another day. I had never felt such deep sorrow, but the support I received was often unhelpful or made me worse. One example was people implying I dislocated the hip replacement by not following the doctors orders. Nothing could have been further from the truth, and I was relieved when a new doctor took an x-ray showing the impingement, and told me that no one could possibly dislocate a hip replacement the way mine went unless they were in a high-speed car accident. My first hip replacement was posterior, and the dislocations were anterior.
I have one beautiful, smart, nice daughter who is the light of my life. I have a close relationship with my mother and stepfather. Under normal circumstances, I would have been able to cope, but too many things were happening and the therapist I had started to see left, taking a job an hour away.
I’m really back-tracking here. I’m still stuck in the anguish of all that happened, and on certain days, these feelings are triggered and leave me sobbing and shaken. Today is one of those days. I don’t know exactly what triggers these memories, but I was diagnosed two weeks ago with Rocky Mountain Spotted Fever with a co-infection of Lyme disease. If you can still make sense of what I’m writing, Kudos!
I will skip ahead to the days after my attempted suicide, which came just a few months after my second surgery, and a new injury in to my knee. I held out as long as I could with such debilitating sadness, I wanted my daughter to have a memorable sixteenth birthday, and went to Tiffany’s to find her a beautiful ring. How bad can life be when you feel you have to leave in order for everyone else’s life to be better? For the people who are dumb enough to insist that suicide is selfish, why are you reading this anyway? You cannot possibly have empathy if you haven’t experienced the horror of such thoughts, so You are not really entitled to an opinion.
It was decided by various people that I was a drug addict, after all, I had taken an overdose of drugs. I must be sent to a drug rehab place. All of my arthritis medicines, my anti-depressant, my fibromyalgia pills, migraine pills, etc., were taken away. Some of my medicine would be given to me each night, and the lidoderm patch I used on my lower back was to be applied and removed by a nurse.
I did very much like everyone at the rehab place, and I had a good experience, good food, comfortable lodgings, etc. The complaints I have are related to my own body’s pain. I was used to taking my anti-inflammatory medicine morning and night. Several times a day (for the past thirty years,) I have needed to lie down to combat exhaustion and take pressure off of my spine and neck. This was just not possible, you had to attend and participate from morning to night. They later explained to me that insurance companies had insisted the programs must run seven days a week from 8 a.m. to 8 p.m. I’m sure the schedule was hard on them, also.
I was not going back to the house I had lived in. Divorce proceedings were started, and I didn’t have a job anymore. I wasn’t fully myself, my thoughts were only about my daughter, and how I must have hurt her. I existed somewhere in the top of my head, trying to buffer everything I observed. Life was going to be very different this time.
It wasn’t until I went back to the house to pack things up that reality finally dawned. When I went into the bathroom or kitchen, someone followed me. I didn’t think too much about it, but began to worry that they were annoyed I had so many little items to pack, make-up, brushes, lotions and potions. All of my pill bottles had been lined up in the front of the cupboard and as I readied a box to pack them a family member stopped me. “You’re not taking those drugs. We have all sacrificed a lot for you to get therapy for your drug problem, and you are not going to go back on all that stuff.” I was perplexed. Why would anyone but my own doctor have control over how I treated my arthritis? My heart moved up into my throat and I experienced a terrible, familiar fear. My own lack of power and money meant I was to be trapped and controlled. Any decisions I made would be questioned, I would have to apologise and explain myself again and again. I was told that any pain I had I deserved, because I had chosen to be a dancer, and everyone knows that causes arthritis. No! I don’t suffer from that type of arthritis! I started to explain with different words, how could I make them understand. Well, you can’t teach people who believe they know more than everyone else. They told me I wasn’t being honest with myself and they would find me a new doctor to set me straight. Of course, no one apologized when the new doctor prescribed all of the same medications. All that mattered to them was that I feel ashamed of myself for having so many problems.
The next game was for them to control when and how much of my medicine I took. If I was taking two anti-inflammatories a day, that was too much. “Why not take Advil? That’s what I do.” If I took just one a day, (usually due to an upset stomach) they insist I’m not taking care of myself. I say that “over the past thirty years that I have taken these medications, there have been several times that I had to cut back for a week or two, not to ruin their lives, but to protect myself from additional health problems.”
Writing this hasn’t made me feel better about things. I guess because the problem is ongoing. I try to surrender gracefully, to submit to the control they need to exert, but it has become harder over time for me to pretend it is okay. I have to stop here and try to escape from reality. It’s too brutal for me.