Living on Narcotics Part 1 (i.e. these pills are a b#itch sometimes)

Tags

back pain, chronic pain, fibromyalgia, life in general, narcotics, opioids, pain, uncategorized

This is a long post, so I have broken it into two parts for easier reading.  In the first part we will discuss opioids and common side effects and in part two, we will look at the medical society’s “crack down” on prescribing narcotics, as well as the effect of opioids on the human body when used for long-term pain management.

When you live with chronic pain and have surpassed the point where over-the-counter medications, such as Tylenol and Advil no longer relieve your pain, you may be prescribed a narcotic in a class of drugs called opioids.  “Opioid drugs work by binding to opioid receptors in the brain, spinal cord, and other areas of the body. They reduce the sending of pain messages to the brain and reduce feelings of pain.”  These drugs include medications like:

-        Oxycodone

-        Hydrocodone

-        Morphine

-        Fentanyl

-        Hydromorphone

-        Methadone

I have recently written several articles about the psychological aspect of being on pain medication, including the poor treatment and judgment I often receive as a result of being a “pain management patient,” however, the difficulties associated with taking these medications can go far beyond the stigma attached to taking narcotics.

Side Effects of Opioids

These sometimes helpful pills and patches can come with a plethora of annoying and problematic side effects.  Common side effects of opioids include:

-        Constipation.  My pain management doctor asked me if I was “doing poopys” regularly because a lack of proper bowel functioning can actually make a person go crazy.  Since I have been dealing with that for almost 2 years before a doctor suggested Lactulose for regularity, I can attest to how terrible this side effect can be.  Worse yet, it can lead to bowel obstructions.  If you take narcotics, it is highly suggested that you ask about daily laxatives if you are not already on one.  Surgeons and general physicians do not always think to put a patient on something like this.

-        Dizziness.  Use caution, especially when driving, as this can come on suddenly.  I have found the dizziness lessened with time, but still happens occasionally.  Everything affects these medications, even things like how much you have eaten, what you eat, etc.

-        Drowsiness.  This is the hardest side effect to deal with because a BIG part of healing and dealing with pain is physical therapy.  When you are taking medicine around the clock that makes you tired, getting up to workout, work, or do anything is like adding another pound to the already heavy weight most of us are bearing.  Caffeine is not very effective in combating this and I often find than just trying my hardest to get up and MOVE is most helpful in propelling me forward…momentum!

-        Nausea and Vomiting.  This has been both terrible and helpful since the nausea helps with appetite control.  However, constant nausea can be very difficult to deal with and I often try tea, eating crackers or pretzels and sucking on little candies to combat this.

-        Drug  and Alcohol Interactions.  These little buggers may help with pain, but they tend to interact with a lot of other medications, especially those for depression, allergies, sleeping pills, even birth control.  Check with your doctor or pharmacist before taking anything. Also, avoid alcohol as much as possible as it definitely interacts with these medications.

-        Dry Mouth.  It’s like having sandpaper between your lips. Water does NOT help with this side effect.  I have constant dry mouth and often drink like a fish, especially if I have to speak in front of people.  I have found the most helpful solutions are the dry mouth gums and sprays and I am constantly sucking on cough drops, mints, etc.

-        Tolerance and Addiction.  How can we forget about the fact that we might get addicted to these pills when TV commercials now warn us about the dangers of taking pain pills during the 5-o’clock news?  For my rant on that, you can see my previous articles on narcotics and stigmas, but these are unfortunate side effects.  If you use your medication correctly, addiction should not be an issue, however, opioids are a class of drugs that your body is relatively quick to build a tolerance to, which is what often leads to misuse.  If you feel your pills are not working well, always talk to your doctor.  Never change dosages without speaking to your doctor.

It is important to keep in mind that not all side effects happen to every person and some may lessen as your body adjusts to the medication(s).  If a side effect is particularly bothersome, NEVER stop taking this medication without talking to your doctor as that can have serious, even fatal consequences.  Stopping opioids has to be done in a controlled manner to avoid serious injury.

Although not a side effect, another difficulty in living with narcotics is obtaining them.  Insurance covers pain management, but in my case, the only doctor who was willing to work with a complicated case is out-of-network, so my co-pays are outrageous.  Since these are highly controlled substances, it also means that you MUST see the doctor every month in order to remain on them.  This can put an additional financial strain on many people whose budgets are already stretched thin due to high medical costs.  Try talking to your doctor about your financial situation to work out a payment plan or see if services are offered at a reduced rate.

Stay Tunes for the rest of the article on Thursday…

My Emergency Room Experience (i.e.- Our Healthcare System Needs Work)

Tags

chronic pain, disability, emergency room, fibromyalgia, judgement, narcotics, pain, pain management, uncategorized

What sparked this article is my most recent unfortunate luck. Yesterday I was driving to my acting class, the only thing I do in my life to try to bring some enjoyment, when I was rear-ended on a major highway. I was stopped and the girl was going about 30-40mph when she slammed into me. Immediately following the accident, I was sore, but I knew that more was to come. By this morning my lower back, where I had my lumbar fusion, my mid-back, neck and shoulders were all in pain and my arms and hands were tingling. After trying to handle the pain all morning I relented and, stupidly, went to the Emergency Room at my local hospital.

As a side note, in 15 months following a 3-level lumbar spinal fusion, hands down one of the most painful surgeries to endure and recover from, I have never once gone to the hospital, despite having pain so bad at times that I could do little more than rock and moan. This morning nothing was putting a dent in the pain, I was scared and I was beginning to panic because the pain was getting out of control, so I agreed to go to the emergency room. Big mistake.

I am writing this post from a hospital bed where I spent the first 2 hours crying in pain. But since I am a pain management patient, I was not being treated for pain, because we are all, in the eyes of hospitals, drug seeking. The nurse informed me that my pain management doctor should put a note about emergency medication treatment in whichever ER I “frequent.” I explained that I have dealt with horrrifying pain for 15 months and never once asked for help. After a pretty decent car accident, I came for the first time, for help and I was met with exactly what I feared. I was given one tablet, by mouth, and told this should handle it. I knew it wouldn’t so much as give me a 1-number relief on the incredibly unhelpful pain scale. I waited the requisite half hour and by this point, in tears and near vomiting, said the pain meds did not work and I came here for help, for the first time ever, and it is not fair that I be treated like this. Finally, the nurse called the doctor and I was given an intra-muscular innjection and allowed to take my OWN pill.

The hardest thing about this is that before being labeled a “pain patient” I came to the ER with abdominal pain a couple of times and I was given pain management within 10 minutes. Now that I am punished with a pain management program, the game has changed drastically.

As I write I am still at about an 8, which is terrible, but worse than that, I feel embarrassed, degraded and quite honestly, I feel like an addict, because that is how they have treated me. Some people think they have these procedures in place for a reason, but these are the same people who have never been in unbearable pain and told there is nothing they can do for them. They have never had to cry or beg just to get help and they have never been accused of frequenting ERs for medications.

What a sad stattement this is about our healthcare system and how people with cronic painn are treated. The only hope is that one day the very people who make us beg will be in our shoes and realize how inhumane it is to be treated like this.

Understanding & Explaining Chronic Pain Part 2- The Wolf Theory

Tags

chronic pain, disability, explaining chronic pain, fibromyalgia, life in general, pain, relationships, spoonies, uncategorized, wolf theory

So, to end this week’s series on ways to explain chronic pain, I present my own theory.  I have used this metaphor to describe how living with chronic pain has changed me.  I call it “The Wolf Theory.”

From She-Wolf to Domesticated Dog: How Pain Changed Me

Approximately 35,000 years ago, the Grey Wolf was not a domesticated animal.  It had no master.  It lived off the land, found itself shelter and food.  It did not depend on humans for sustenance.  Prior to domestication, the wolf lived its own life.  It fought its own battles, it took care of itself. It had a purpose.

So what in the world does the grey wolf have to do with living with pain?  The way my twisted mind works, it’s actually quite clear to me, but let me expand on that.  Everyone has heard the phrase “what a lucky dog!”  That is because many people look at “a dog’s life” and sees an animal that (at least in my household) is cared for, gets a little exercise and then spends the remainder of the day and night laying around and sleeping.  She has the life- no worries, no.  Some look at this lifestyle and think: “I want a dog’s life.”

I have a dog’s life. I can tell you, it gets old and boring real fast.  Here me out (and please, do not get offended, this is only an analogy).  Before wolves were domesticated and became what we know of as “dogs,” they had a very different life.  They had jobs, purposes and they depended on themselves and their instincts to survive.  They had to go out and find food and water, find shelter to protect themselves from the elements.  They travelled in packs and although they had the pack to help them, essentially, it was every wolf for itself.

This is somewhat similar to the way I feel since my injuries.  Before living with chronic pain, I had a job, I had a purpose and I had goals.  I was self-reliant.  Yes, I had and still have my pack- my husband, my family and friends- and they helped me, but when it came down to it, I had to take care of myself.  I had to study, work, and help provide for myself.  For the last two years, I feel like I am a wolf that has been turned into a domesticated dog.  I no longer have a job (except the occasionally free-lance writing job), I feel I no longer have a purpose, I have few goals and I have to depend on my husband to provide for me.  See the connection?

I am grateful that I have shelter and food and that my husband protects me, but I somehow feel like less of a person since all this happened.  I feel like my dog, going out for my daily walk/exercise and then laying around, sleeping a lot and watching television.  My dog and I do this out of necessity.  If she was a farm dog, she would be herding cattle, going into the fields to help.  If I were not living in pain, I would be going to a 9-5 job and providing for a family.

My dog can’t change her circumstances, her life is that of a spoiled, and I think, happy, dog.  My life, however, can change.  Every step is difficult, but I am trying to remember how to howl at the moon.  I am making changes to go back to the she-wolf I was.  I am taking on more freelance work, writing more, going back to acting class.  It’s not easy and these are small, difficult steps, but I am trying to change my circumstances.

Resource:

http://archaeology.about.com/od/domestications/qt/dogs.htm

Explaining Chronic Pain Part 1- The Spoon Theory

Tags

chronic pain, explaining pain, fibromyalgia, health, life in general, mental illness, pain, relationships, spoon theory, spoonies, uncategorized

For those of us with chronic pain, “The Spoon Theory,” originally written by Christine Miserandino, has been widely used to help people with chronic pain explain to friends and family what it is like to live with chronic pain.  The theory has become so popular that many people in pain even refer to themselves as “Spoonies.”

I would like everyone to check out the spoon theory because this week, I would like to talk about explaining chronic pain to others.  There are a few other theories out there, and I have one of my own, so this week we will explore the best ways to communicate to others what our lives are like.

 The Spoon Theory

by Christine Miserandino (http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/)

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

© Christine Miserandino

Growing Up Depressed

Tags

chronic pain, depression, humor, life in general, obesity, uncategorized, youth

I am re-posting some oldies but goodies.  Here is one from last year that I recently put on Psych Central.

“The most beautiful people I’ve known are those who have known trials, have known struggles, have known loss, and have found their way out of the depths.” (Elisabeth Kübler-Ross)

I have spoken a lot about the last two years of my life because of the back surgeries and chronic pain, but there were 31 years before chronic pain became a part of my daily life. I believe I have had a good life, but I have had to fight. Fight for my sanity, fight for control over my emotions, fight for my happiness. Even before pain and depression became synonymous, I battled with depression and anxiety.

When I was about 12 years old, I remember reading a “Glamour” quiz entitled “Are You Depressed?” I was too young to even comprehend the concept of depression, but from the time I was a child, I knew something was different about me. Luckily, I also realized that what made me different, also made me wonderful. Because I was always living in a tornado of ever-changing emotions, I learned to be empathetic. I truly felt for other people. I was picked on almost every day of school (at least until high school when every day changed to often). I was mostly picked on for my weight, but also for the fact that I would cry easily. It made me angry and it hurt more than any spinal surgery I have had, but I never tried to hurt others, with my words or otherwise. I understood, on some level, even as a child, that the people who said mean things to me were also hurting and that being cruel was somehow making themselves feel better. It didn’t change how terrible it was to grow up hating my body and, to some extent, myself.
From the age of about 7 I was very overweight. My body did not look like my friend’s bodies and as a young girl that was heartbreaking. My breasts were never perky, my tummy never flat. I couldn’t wear the same clothes my friends wore. I spent years hiding under oversized sweats and baggy pants. I was lucky that I had a close group of friends, whom I am still friends with today, more than 20 years later. But, I did not have boyfriends. School dances were about group dances with my girlfriends and going to the bathroom every time they played a slow song. When you feel different from everyone, physically and emotionally, childhood can be difficult. The difficulties I faced in school contributed to the already omnipresent depression. My parents are amazing and they did their best to remind me of what a good person I was, but that did not sink in until much later.
All I knew about my emotions was that I was what my pediatrician referred to as “high strung.” I was moody, I worried about EVERYTHING and I was fearful. I look at myself today, a person who speaks her mind, who is brave, who doesn’t take crap from anyone, a woman who doesn’t give a flying fudgesicle what people think of my body, imperfections and all…and I wonder how I ever lived like that?
Thankfully, by my late teens I started to change, physically and mentally. The summer before my senior year I began to lose weight, so by graduation I was almost “normal” sized. I believe that accomplishment helped me to gain some much needed self-esteem and it began to bring me out of my shell. Getting the heck out of school really helped. I was not at the top of my class in high school, yet when I started college, first at a community college and eventually all the way through to my masters, something clicked and I realized I was smart. As a matter of fact, I graduated with honors for all three of my degrees and my GPA was never lower than a 3.95. It was like suddenly I realized I had talents. As a kid I knew I was funny and I was a good artist, but when I got to college it was suddenly a world where I could choose (mostly) what I wanted to learn. I could use my strengths and improve my weaknesses. I felt liberated and I started to believe in myself. I started dating here and there and became less painfully shy around boys. I joined the theatre club and some other activities and I started to find my voice. I truly believe that my acting class was far more helpful than any therapist ever was. My college years were the first time in my life where I really felt like I was coming into my own, but the one thing that was always there was my depression.
Like a fly that buzzes around your head, the depression and anxiety were always there, regardless of how hard I fought to keep it away. Every small let down, every bad date was like the end of the world for me. I was sure that other people held it together better than I did. I was certain that something was not right. It can’t be “normal” to be this sad or anxious or irritable all the time, can it? It was not until I took an Abnormal Psychology class that I really understood that there was a name for what I was going through. The teacher warned us on Day 1 that we would start to believe we had every psychological disorder in the book as we read and learned, but not to worry, it was all part of the learning process. I, however, did. I learned that I suffered from depression. It was actually a relief for me to finally have a name and a list of symptoms that made it clear to me that all these emotions that seemed out of my control were in fact, as Glamour posited, depression.
Throughout my adult life I have taken medications, mostly unsuccessfully. It took me MANY years to learn that my greatest medication was myself and my knowledge of myself and my diagnosis. When I was looking into graduate school, I thought to myself, “I can help others who are going through this because I know what it’s like, first hand.”
Would I prefer to live my life without depression? I used to think “Absolutely!” But the more I think about it and write about it, the more I realize that I would not be who I am if not for my chronic battle with depression. I wouldn’t be strong and (mostly) fearless and self-aware. If I hadn’t gotten to know myself and my depression and learned to fight for my sanity, I wouldn’t be the person I am today. Considering what I have to deal with a daily basis, I guess my younger years were like boot camp for what was to come.

Pain and Our Perception of the Future

Tags

chronic pain, depression, fibromyalgia, future, pain, uncategorized

I used to have a very clear picture of my future. I saw myself in a nice house, accomplished in my job as a therapist and an author. I saw a couple children, saw myself running around after them and laughing. I saw a healthy, fun life, full of laughter and smiles. Two years ago that picture became fuzzy and, ultimately, disappeared. I am not trying to be over-dramatic and suggesting I don’t have a future anymore, but the truth is, for many people living with chronic pain, the future is very fuzzy, if it can be seen at all. I feel like the longer I go without a reason for my pain, the dimmer the picture gets. The house is blurry, the job is very blurry and the children have disappeared from the picture altogether.
I think part of the reason for this phenomenon is that, even on a day to day basis our lives are a giant question mark. Will I have the energy to do x? Will my pain meds help me or just knock me out? Can I get to the gym today? Will my mood be happy? Sad? Irritated? A lot of people think that everything is dependent on physical pain, but the truth is the emotional pain can sometimes be more overwhelming and devastating than even the physical. When you live with constant disappointment, your mood suffers.
Sometimes just the fact that I have little to do is enough to make me, well, pissed. It is the reason that I try to get to acting class so that I can do something and feel like I am participating in life. As someone living with a disability, I often feel like life is passing me by while I do little more than watch and fast forward through the commercials.
What is even more sad is I have plenty of time to do things, like my freelance writing, but the difficulty comes not only in being able to sit to do my work, but getting my energy up to do that. As I am sitting here writing this I am bleary-eyed from exhaustion. What did I do today? I went to the pharmacy, went to get lunch for my nephew and wrote for maybe half an hour. Oh, and I straightened my hair. The littlest things literally zap my energy. What’s harder to accept is the less I do the less I want to do. My brain keeps telling me I should be writing the next great American novel, but my body fights with me when I have to do the simplest thing (well, the novel part is not that simple).
So, the question becomes, what do we do about this? The serenity prayer says “Grant me the serenity to accept the things I CANNOT change, the courage to change the things I CAN and the wisdom to know the difference.” The difficulty comes in accepting the things we cannot change and knowing the difference. Try as I might, I cannot seem to change the fact that I am limited in what I can do, however, accepting it is difficult because I continue to want to CHANGE it.
What can we change? Besides our attitudes, there is not much we can change. I mean, we can keep seeing our doctors and hoping for new answers and better procedures and medications, but I can’t change the fact that I am in pain, nor the ability to do more than a few hours of activity at a time. The only thing I can change is my response to this, which is generally negative. Unfortunately, that is easier said than done because the voice in my head still continues to say “But people don’t believe you” or worse yet, “But you SHOULD be able to…”
I believe it was in an episode of Sex and the City that Carrie wrote “Why are we should-ing all over ourselves?” It’s a good question…for another time.

Why People Sometimes Say Hurtful Comments

Tags

chronic pain, insults, pain awareness, raising awareness, relationships, uncategorized, understanding

Photo from http://www.blingcheese.com

Written with Cassandra Russom

In a moment of frustration I posted this on my Facebook page dedicated to Chronic Pain, Tracy Rydzy- Oh What a Pain:

Sometimes I wonder, when something comes up that is difficult to accept or hurtful or upsetting because of living with chronic pain, do people try to be jerks about it or are they really too stupid to understand?

One of the pages’ followers, Cassandra Russom, responded with her opinion and I think it will resonate with many readers. We co-wrote the following article:

When you live with chronic pain, it often feels that no one understands how difficult life is and people sometimes make comments that end up being hurtful. There are three key reasons why people say things or act in a careless or hurtful manner when it comes to dealing with chronic illness issues.

The first reason could be that the person who is acting as such is in some sort of pain themselves (emotional, mental or physical) and are lashing out. Maybe your situation hits a nerve with them and reminds them of their own unaddressed pain, and so they strike out as a defense. Many of us have done just that, lashed out at a comment that hit too close to home. It i s also possible that the person may have had a bad experience with a “faker” or malingerer, so they carry a chip on their shoulder when it comes to chronic illnesses. This is common for medical professionals as well and is the reason why pain management doctors can seem like FBI agents the first time they meet you. It is sad but true that there are people who fake illness for one reason or another and it affects those of us who are truly living with pain.

The second reason, commonly seen in support groups, is that there is a pre-existing dysfunctional dynamic, and chronic illness provides another step in the “Dysfunction Dance.” In this scenario, the offenders were always hurtful jerks, but now they use the chronic illness as an excuse or as a weapon. It’s sad that it’s so common, and it can be very hurtful. Bullies will be bullies and chronic pain is an easy target.

The third, and probably most common, is that most people simply don’t have a frame of reference to understand or relate to chronic pain or chronic illness issues. Think about it– everyone has a “filter” that they use to interpret the events around them. Chronic illness changes our filter, and we become more sensitive to comments that we interpret negatively. I think that most of the time, people are either unaware that what they’re saying or doing is hurtful, or they are genuinely trying to be constructive in the only ways they know how.

An illustration of this would be caring friends who read about a condition that sounds similar to my symptoms and then tell me that I should read about it and get tested for said disease. That person is trying to help but we tend to interpret that as “I don’t believe that you’re really sick with what you say you are. I think it’s something totally curable and you could get better if you wanted to if you tried this.” Most times these comments (which I have heard numerous times in the past couple years) are responded to by being defensive, whereas the reality is that the other person is simply trying to wrap their mind around my chronic illness, because they don’t understand how it happened, or why, or what we can do about it that we’re not already doing.

Most people can’t understand our situation, and we really shouldn’t expect that of them. Our friends and family are doing their best to understand, despite our frustration and we should try to give them the benefit of the doubt. Think about it from their perspective, despite the fact that we would love to hear some magic words to make it all better, really, what do you say to someone who hurts all the time, or is sick all the time? They are trying to say the right thing, something that will encourage us and communicate support, but not hurt our feelings or make us feel like they’re bossing us around… It’s a conversation full of landmines.

The same applies to strangers. They have no context for this kind of experience, so they simply don’t understand the impact a statement can have. Many times it’s not the statement itself, but the implications of the statement that are hurtful.

The bottom line is, despite our wanting it to be different, we ought to be as patient with other folks as we would like them to be with us. We have to cancel things at the last minute, we are not always great company, etc., and we want them to understand and work with us. On the other side of the coin, they’re trying to relate to something huge that they don’t understand, and it can be frustrating and uncomfortable for them as well. We should cut them some slack. While it’s totally appropriate to feel angry and upset and comments that are perceived as hurtful, I think giving the benefit of the doubt might go a long way in bridging the gap between “normal” people and chronic illness sufferers. That, and lots of honesty.

For a list of helpful things to say and not to say to someone in chronic pain, check out the posts on the top left!

Thank you Cassandra for the idea and the article. Please visit Cassandra’s blog at http://brusselsproutblog.blogspot.com/

Wonderful Team Membership Award

Tags

Awards

I want to thank Tersia Burger and her inspiring blog for nominating me for the Wonderful Team Membership Award…I graciously and humbly accept. http://tersiaburger.com/2013/05/18/wonderful-team-member-readership-award/

Please forgiver me if my award posts sound similar but in having a hard time sitting to write these days.

The Rules:
1. Display the logo on your page.

2. Finish the sentence: A great reader is someone who reads with an open heart and mind.

3. Nominate 14 readers I appreciate. You are all subscribers and loyal readers, congratulations!

1- http://chronicpainsurvivor.wordpress.com

2- http://staciegh.wordpress.com

3- http://pocketperspectives.wordpress.com

4- http://barefootbaronness.org

5- http://chronicspeak.wordpress.com

6- http://lymphomajourney.wordpress.com

7- http://doilooksick.wordpress.com

8-http://nevercryoverspilledmilk.wordpress.com

9-http://depressedpessimist.wordpress.com

10-http://happierhealthiermorefitme.com

11- http://cupcakesandkalechips.con

12-http://happierhealthiermorefitme.com

13-http://cobbies69.wordpress.com

14-http://awaketolife.wordpress.com

15-http://lynlindsay.wordpress.com

Weight Loss and Chronic Pain

Tags

chronic pain, diet, excercise, obesity, weight loss

This is a revised post from last year that I recently had on Psych Central:

Me- 1 Year Ago

 

Me- About 13 pounds ago

Weight loss is a heavy topic in the United States, with ads on every webpage advertising “quick and easy solutions” to weight loss. There are pills, juices, powders, shakes and more, all designed to get you in shape. With an obesity rate over 35% for adults (and a shocking 17% for adolescents), weight loss is not only about vanity, it’s a matter of life or death. (http://www.cdc.gov/obesity/data/facts.html)

In July of last year, when I had my first surgery, I was already obese. Add to that an injury, chronic pain and a three-month course of steroids and I went from obese to morbidly obese and extremely unhappy in under six months. I was overweight, unhealthy and I was facing a second surgery. That alone should have been all the motivation I needed, but it wasn’t. I was depressed, angry, unhappy…and I kept eating to feel better.

In February of last year I had my second surgery. My spine was cut apart and pieced back together again like a jigsaw puzzle, this time with rods and screws. I could barely walk, barely move, and I was being told I had months of physical therapy ahead of me. I was beside myself. I was scared and I was p!ssed off! I was being told I have a 2-year recovery ahead of me and already I was edging dangerously close to 300 pounds. I felt horrible about myself. My self-worth and self-esteem and every other “self” in the psych book was already low thanks to the major life changes I was dealing with and, to top it off, I was looking in the mirror and someone I didn’t recognize was staring back at me.

I have battled my weight my whole life. Even when I had a perfectly healthy, titanium-free back, I had weight issues. At 16 I lost 65 pounds, bringing me under 200 pounds. A bad relationship and sedentary lifestyle in my early 20s eventually drove me to over 300 pounds. At 26 I lost 125 pounds on time for my wedding, but a thyroid condition and the comfort of marriage brought me up to the mid-200s again. I was unhappy but I had started back on the road to weight loss when I hurt my back. Not only did the weight loss stall, but I started packing on the pounds faster than I could say “Slimfast.”

As of February 2012 I was looking at weight loss once again, but this time, with a broken back. I needed to lose weight for my health, for my back and I needed to lose weight so I could look at myself again in the mirror and feel proud about something. I needed to lose weight so I could gain back some much needed self-esteem. So there I was, faced with this daunting task. I prayed to God, “please just let me lose 20 pounds without trying! I just need a head start and I promise I will do it.” God listened. The surgery, combined with handfuls of medication, killed my appetite. For once the depression was so life-altering that my appetite was non-existent. I didn’t eat much and what little I did move required I use every ounce of strength I had. When I went to the doctor a month after surgery, I had lost 22 pounds.

Now I had to make good on my promise to God to do the rest. He had given me a head start, now I had to finish the race. Thrilled with the weight loss, and having been given a shot of confidence, I started watching what I ate. I began walking, at first only 4 houses down the block and back, building until I could get around the block. I continued to lose, rapidly. Cheered on by family and friends I tightened my belt (literally and metaphorically) on what I was eating, tracked my calories and started physical therapy which was guaranteed exercise 3 times a week.

It’s been just over a year since I started PT and I have lost over 115 pounds! I have gone from a 26/28 to a 12 and I went from a wheelchair to running (painfully albeit) on a treadmill for a couple miles!

The challenges of losing weight while in chronic pain at times feel insurmountable. There are many days that I am in pain and would rather stay in bed. There are mornings when I wake up sore, on top of being in pain already, and I want to give up. But there is that part of me that keeps shouting, “You haven’t given up on life, you have to keep going!” So I do. I eat the salad instead of the pasta. I do the extra 15 crunches. I ditch the donuts (most of the time) and I pray, “Just please let me get through this day and make the right choices.” I am not on any specific diet. I eat what I want, when I am hungry, but I finally, after 20 years of dieting, figured out that I can have it all…in moderation.

Sometimes I feel like these surgeries and this pain have taken so many things away from me. Well, I started taking them back. I took back my small clothes, little by little from their storage bin. I took back my strength, my motivation and my willpower. I took back myself…and then some!

I am not preaching that this is an easy task. There are times when I am grunting my way through squats, when I want to throw in the towel and shout “I AM DONE!” But, for me, being morbidly obese and sedentary was no longer an option. It was time for me to take responsibility for the things I could control and the things I could do to help myself and my weight was priority #1. I cheat. I take days off. I still make some poor choices, but I am doing it. Every morning I choose to get out of bed and fight I am getting closer to where I want to be, but, like everything else in life, I have to take it one day at a time, one step at a time and one pound at a time.

Humor and Chronic Pain- A Top 10 List

Tags

chronic pain, humor, laughter

When you are living with CHRONIC PAIN, it is vitally important to try to have a sense of HUMOR about your situation.

I live with pain and I know that it is no laughing matter, and this is not intended to make light of a difficult situation, but I have also learned that if you don’t laugh about the challenges in life, you are likely to cry.

In the spirit of laughter, I have composed a top 10 list.

The Top 10 Clues You Live with Chronic Pain:

10- You wish there really was a Dr. House, M.D.

9- You watch every medical drama and understand the medical jargon, the differential diagnosis and worse yet, half the cases sound like they could be yours.

8- Your doctors talk to you like colleagues, instead of patients, because you are so well-educated on your condition(s).

7- The “middle of the night” for you is actually more like 2 o’clock in the afternoon because you deal with “sleep issues.”

6- Doing your chores, sometimes literally means just getting out of bed and taking a shower.

5- Everyday feels like PMS. (For Women)

4- You carry more pills than a pharmacy.

3- Your moods change…frequently.

2- You forget things like…what was I talking about?

1- Your doctor sees you and touches you more than your spouse!

I may not be able to do a lot of things because of my pain, but one of the few things I can do without pain (usually) is smile and laugh.

What can you add to this list?