Out Of The Ashes

Out Of The Ashes

One of the first PILD pieces I ever wrote was about drug addiction. It was an incredibly poignant piece of prose, but the basic theme was this: Anyone can become addicted to prescription pain medicine. This is a simple fact.

This is a new blog, and since many of the readers may not know me from “…..And The Moon Sees All”, let me clarify why I am writing about this particular subject.

In 2003, I believe, after years of bizarre pain and recurring injuries that I could not explain, a doctor sat me down and said “All of your tests have come back negative. Your blood work is good, everything’s negative. Your MRI is clear. Your x-rays only show the spinal issues that the MRI showed 4 years ago. Have you ever heard of Fibromyalgia?” I had only heard about it in passing, I did not know a lot about it. Not much was known about it on a whole, but in all honesty, I was a little too distracted, because knowing that what I had was not Lupus was much more prevalent in my mind.

My world changed that afternoon, and has continued to change every day since then. I finally had answers for what was plaguing me. Unfortunately, I did not know just how much the disease itself would plague my life, what it would take away, the time it would rob me of, and I still have no idea what it will do to me in the future.

When all of the pain began, I was put on several different types of pain medication and a muscle relaxer as the standard operating procedure. Coming from a background where I had worked for a professional athlete who’d had his demons with pain medication, I was not a fan of what this entailed. I was not going to become a person that lived her life based on her next dose, nor was I going to become this person that abused what she was given. To this day, I am still one of the most responsible users of medication that I know.

As the years have come and gone, I’ve pretty much adhered to a 2-3 times a day policy, even on my worst days. Technically I am allowed 8-10 pills per day. Many years ago, when the medication simply wasn’t strong enough because I’d been on it for so long, I was taking the maximum allowed dose every single day. Eventually, it all stopped working and I lost my patience. I then weaned myself off of it and now, on the absolute worst days, I will only take something at night. During the day I will take Tylenol or Aleve, but at night, I allow myself the prescription. On days when I cannot move a muscle or get out of bed, I might allow myself a morning pill, but I’ll definitely chastise myself over it.

Millions of people suffer from Fibromyalgia and Chronic Pain. There are a laundry list of side effects from each and the truth is, to this day, I still don’t know for sure if I have one or the other, or a combination thereof. My doctors have been lax. They have found it easier to refill prescriptions and try to refer me elsewhere because what I am going through is truly out of their wheelhouse.

I took very high doses of Cymbalta for 8 years and it did give me aspects of my life back. I almost felt like a regular person again. However, once it stopped working, I could no longer go back on it. I have tried multiple times at the 20 mg level (the lowest dose possible) and even that is too high a dose for my body now. I have tried Lyrica and while I know it helps some people, for me personally, I think it is a seriously awful drug. It was like being 100% aware in a coma. In turn, I’m not touching Savella with a ten foot pole.

My first referral was to a pain management center where they spend the entire day performing epidurals and nerve blocks. Strictly speaking, unless you are done having kids (which I am NOT, and obviously this only applies to women), you shouldn’t be using this as a form of pain relief unless you’ve chosen not to have kids. The risk of an epidural wearing off for me in the future in the middle of childbirth is a risk I am not willing to take. I spoke with my doctor about it and he was mortified that this was the only option being made available to me. He agreed with my perspective and said that if I went through with it, I would absolutely have one fail during childbirth. At that point, I was left without options.

I have tried experimental medications, some of which have only recently been approved for the treatment of Chronic Pain. One in particular robbed me of a week of my life, I will never take it again. I have done several courses of Eastern Medicine and while some of it worked well, others were so temporary that I don’t feel like two hours of pain relief is worth spending a week in bed. Herbs are not addictive, but you do continue to seek pain relief from them if they work. It becomes a different type of pattern, albeit a natural one that isn’t habit-forming.

My next step in this lengthy, exhausting process is a Fibromyalgia specialist. Yes, they do exist, but they’re hard to find and it’s not easy to get on a waiting list to see one. Many of them do not take any form of insurance, except Medicare, so they definitely don’t make it easy for you to seek out pain relief and the proper treatment method for your body. However, I am determined to get in to see the one in my area, even if that means a 6+ month wait, or longer.

I did nothing to cause the Fibromyalgia from creeping into my body and systematically trying to take over. There is a widespread belief that it is caused by physical and/or emotional trauma in your life, and the on-set is different for everyone. It is widely speculated that mine was caused due to a gymnastics injury that lingers to this day, but the truth is, my doctor was simply going over my history and looking for a particular physically traumatic event to try to help me find some closure as to how it may have happened. We will never truly know with any certainty.

Some people have Fibromyalgia or Chronic Pain so mildly, that their flare-ups are just a few days per month. Others are experiencing pain so severe that they cannot function or take care of themselves, their lives change in the blink of an eye. None of us WANT to end up in wheelchairs, but I keep hearing about it and that is incredibly scary to me.

This disease is like many, it is a predator. It targets anyone, it does not discriminate. It can, and it does, happen to anyone.

So, the next time someone tells you they have Fibromyalgia, do not tell them they “don’t look sick”. I can’t tell you how often I get told that I “look great”. Yes, and it takes me 5 hours to look that way.

Don’t judge someone with any form of Chronic Pain or Fibromyalgia. Do some research and do what you can to lighten their load, even if it means cleaning a room for them when you can, taking them to doctors appointments when you are able, or cooking for them so that they don’t have to struggle in their attempts to put a meal together for themselves and/or their family. Be a supportive ear, and don’t take it personally when they inevitably have to cancel plans with you constantly because the pain is too much. They aren’t doing it on purpose, they don’t hate or dislike you, but they DO hate their pain. Do what you can to put their mind at ease. Be kind, be courteous, and above all, treat them the way you’d want to be treated if you found yourself in the same position tomorrow. If they weren’t able to go with you to see that movie, bring it to them when it comes out on DVD and provide them with a fun movie night at home. Make them comfortable. Show them that you care. Take their pain seriously and they will respect you for that. If you walk away from them thinking that they’re faking it or that it’s “all in their head”, pause for a second and factor in the simplicity of karma.

One thought on “Out Of The Ashes

  1. I absolutely agree with you. I have chronic pain from all the osis’s of the spine and recently 3 new herniations from a fall which the MRI also showed that my arthritis in my back has become significantly worse. My left leg decides when it wants to work and I fall but I refuse to use a cane yet because I am fearful of not using those muscles that are weakening because of the siatica nerve being pinched, no feeling in my left foot at all and my right leg for the past 8 years has done this on and off but my left since June, is constant pain and numbness in my foot. I have 4 cervical herniations that cannot be operated on because there’s a 75% chance I’ll be permanently paralyzed but the second surgeon I saw wanted to schedule my surgery that day after spending 5 minutes with me….hmmm, questionable. I think that was the worst & most dangerous example of a money hungry doctor I have experienced. I have scoliosis, I now have more disc herniations and more pain and paralysis in the morning, I rarely sleep more then 2 hours at a time and I could go on and on. I know chronic pain and have suffered for 8 years. I didn’t ask for it, it happened to me from someone else’s carelessness and my degenerative disc disorder. I was 29 years old when I took my first opiate, it was the first thing the doctors perscribed me before they even knew I had herniations in my neck. They thought my neck was sprained and gave me hydrocodone. If they had asked some questions that would have known, my husband had just left after 10 years together, my career was over before I even finished my final semester of graduate school because of it since drinking and become my new favorite thing. I managed to still graduate that semester with a 4.0., arrested 3 times in a month and a half for leaving my 6,9, and 11 year olds home alone to go to the bar so a Master’s in Education with a School Counseling concentration was pretty much useless since I couldn’t work with children with 3 endangerment charges. Also, they could have checked my mental health records and saw that just 3 months before I had tried to shoot myself, locked in my home office with a shot gun and was hospitalized at the same psych ward I was interning at. I was able to manipulate my way out within 24 hours but there was a record of it and police involvement. But the doctors just wrote the script anyways. Then they found the herniations and gave me more narcotics. Next (and this all happened within a 6 month period) and finally, my father died, slowly over a month’s time, never regaining consciousness again from a massive stroke. He literally starved to death in front of me. When they gave him 24-48 hours left, I left too. I came back 2 days later, went to the funeral and gave my children to my sister, abandoned my home of over 10 years and disappeared into the downtown streets becoming an IV heroin junkie and crackhead in just 9 short months. No one heard from me again until my 85 lb, pregnant body fell through the doors of a methadone clinic in 2010. I was starving, dehydrated, delirious and dying from drugs coursing through my veins instead of any food or water. The pregnancy had to be terminated, I nearly died. It took several months before I was fully able to surrender and stay clean through Narcotics Anonymous and the clinic. I have come a long way since then. I do understand pain, emotional, physical and spiritual. I understand what it’s like to have to tell a doctor you can’t take a medication that could help the pain because it would be a death sentence and send you right back spiraling into the pits of hell that you so desperately clawed your way out of. I know pain but today I don’t chase the dragon anymore. I am a dragon slayer. I am a human being. I am aware of my illnesses and I know I have to make a choice every single morning, “Do I want to live or die today?” So far, I have chosen life each day and so far, I am still here doing what I believed I was meant to do and why my life was spared when I have lost so many people over the past 8 years to drug addiction. I think it was to do this, to share my story, to reach out, to spread awareness and hope. I truly admire your strength and courage to share your story as well. We are each here for a reason, some of us find it, some of us don’t and some wander through life bumping into walls. I think we are the lucky ones. We fight a deadly, painful battle every day but we share so that others don’t have to suffer like we have.Blessed Be ~Amy~

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