“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.

Photo courtesy of  D. Sharon Pruitt via Compfight

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.

Photo courtesy of  Kevin Dooley via Compfight

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, 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.

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In the past 2 years I have had the misfortune of dealing with doctors who have left me feeling like a drug addict trying to get my fix due to the stigma attached to taking opioids for pain.

I have felt the judgment, been grilled by pain management doctors about my behavior and use of medications, been given the suspicious glances and been treated rudely when I ask for and even fill my prescriptions, as if someone taking narcotics need not be treated like a human. Why would I, after all, in their eyes, I am just a drug addict.

The sad thing is, sometimes I don’t feel all that far from one. I am chemically dependent on my medication. Without it, I can’t function, can’t move, can’t do household chores, nor can I do physical therapy. In short, I can’t do much to heal or help myself without them. Am I an addict? No! Am I dependent on these meds to scrape through my days? Absolutely!  I don’t get high off my medications. I don’t take them to feel happy or euphoric and I don’t take more than I am prescribed.  So, if I am not an addict, why am I treated like one by the very people who prescribe the medication to me? Why do I have to take urine drug screens when I admit that I take medication?  Isn’t the suspicion going a bit too far??

I do my part. I do physical therapy, massage therapy, and I have tried all sorts of pain management tactics, including meditation and therapy. I am doing my part, all I ask is that these medical professionals do theirs. But because there are so many people trying to “screw the system” to obtain narcotics illegally, everyone is suspect, even those of us who truly need it.

The cruel twist is that I want to tell the doctors, “You wrote me the prescription. You gave me the damn pills and told me to take them around the clock. You got me dependent on drugs and now you have the nerve to give me a hard time when I need to refill them?” Every month I have a knot in my stomach when I go for my appointment because I never know if I will be treated as a real person in real pain, or a malingering drug addict looking for a fix.

Oh what I wouldn’t give to tell my medical “professionals:” Please, please don’t judge me! Please don’t make me feel bad when I ask for my medication, please don’t make me pee in a cup and please don’t treat me like I am an idiot when you speak to me. I may be on medication, but I am intelligent and I know what is going on. Please understand that I didn’t choose this for myself. I don’t want these damn pills, but I have no other choice right now as I have exhausted my other options for pain relief. Don’t hold my condition against me. I understand the pen is mightier than the sword, so I can’t even ask to change dosages, I can’t request anything different, I certainly can’t be rude in any way (regardless of how you treat me) and I can’t question you because you hold my ability to move and get out of bed in your little prescription pad.”

Please understand that 80% of the doctors I come in contact with are wonderful, understanding and amazing. I do not feel judgment from all doctors. But, in my experience, the doctors who prescribe these medications are the ones who judge me for being on them.

I hope to one day not need these pills. But until that day comes, I only ask that I be treated with compassion and understanding.

Have you experienced judgement or difficulties with your pain medication?

Photo courtesy of Auntie P via Compfight

Before and After, though the After is about 10 pounds heavier than I currently am.

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.

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Kids are a joy…and a lot of work.  For about 4 years now, much of my social life has revolved around my friends and family and their children.  Children make me so very happy, so it should come as no surprise that my husband and I have spoken about having kids.

Being an aunt is wonderful, but at times strange.  I love the children in my life.  However, when you are an aunt, you miss out on the true love a child has for their parent, and vice versa.  I may be the coolest, best aunt ever, but these children will never love me the way they love their mother and, without kids, I have never experienced the unconditional, amazing, terrifying love that comes with being a parent.  I often feel like an imposter.  I am always happy to take the kids off their parent’s hands, even with my back problems, but I am not their mother.  I have no say in how they are raised, I don’t have any parental authority and I have to be very careful with the parents not to overstep my bounds, even if I have the best intentions at heart.  Help can sometimes be mistaken when it comes to children that are not your own.

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Supporting someone in chronic pain can be difficult.  There is nothing that can be done to ease someone’s pain and sometimes, it leaves friends and family at a loss for words. There are no magic words or actions, but there are suggestions for things to say that could possibly help your loved one feel better.

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I wanted to do a post in response to so many of the wonderful comments that were posted in the last post “What NOT to Say to Someone in Chronic Pain.”   I was unable to respond to each comment individually but I was both sad and happy at the overwhelming response to this article.

It made me sad to read so many stories similar to mine regarding how difficult it is to live with chronic pain.  Some of the stories honestly brought tears to my eyes, but at the same time I was so thrilled to hear that the writing resonated with you and that the comments, for the most part, were very supportive.  It made me happy that we are coming together as a community to support and help each other.

When you live with a condition that isolates you, it is so important to have a safe place to express yourself.  I have said it before and will say it many times over: Chronic pain sucks!  A lot of what we are going through sucks, but it takes courage to say that.  As people in chronic pain we live a lot of our lives behind a mask, a mask of strength, a smile to hide the pain, but in reality, we want to shout at the top of our lungs- this is not fair!  I saw many comments that showed how strong we are as a group and I wanted to say that you, we, are all very courageous for being honest and for fighting for normalcy.

It is true, most people do not mean to be hurtful and really just don’t know what to say, but it doesn’t take away from our frustrations at some of the comments we hear all too often.  Thank you for your additions.  I saw many comments that resonated with me and others including:

1-     “Don’t stop talking to me and being my friend just because you can’t fix me, it will only make things worse.”

2-     “Be careful not to get addicted to pain medicine”/being made to feel like a criminal because we need to take pain medication.

3-     “God doesn’t give you more than you can handle.”

4-     “See a psychiatrist /therapist.”  Although both can be very helpful, to pass off pain as something that is simply the result of depression or anxiety is insensitive and incorrect.

5-     “I wish I could stay at home all the time like you.”

6-     “You can do x why can’t you do y?”  Or “You were able to do that last week, why can’t you do it now?”

7-     “You should feel reassured that they can’t find something wrong.”

You are not alone.  I think the multitude of comments proved that we are not alone in this and I am happy that the comments were helpful and supportive to each other.  It is so important to feel like there are people who understand what we are going through because, although it doesn’t alleviate the physical pain, it helps with the emotional pain. In regards to comments, please know that I approve almost every comment that is made, with the exceptions of comments that antagonize or offend others.  This is a safe place, including for those who wish to express anger at their situation, but comments that attack others will not be posted.

I am working on a list of helpful things to say because I do not like to focus solely on the negative aspects of life with chronic pain.  The post is scheduled for Tuesday morning.

Thank you all for commenting and helping each other!  Together we will raise awareness and help one another through the difficulty of living with chronic pain.

Photo courtesy of  Martin Gommel via Compfight

I will be the first to admit that living in chronic pain can make me a bit…sensitive.  I think when you live with pain or a disability, there is a tendency to think that people are judging you or criticizing you.  I often feel a sense of inferiority at not being able to do what women my age can do.  I also tend to feel there is a stigma attached to being chronically ill and, especially, to taking pain medication.

Through my discussions with fellow chronic pain sufferers and from my own experience, I have compiled a list of things that I am often told that people think are helpful, but for most of us, they are not.  I am cautious in how I state this because I know that most people mean well and really are trying to help.  I also know that after a couple of years living with this, many people feel they need to walk on eggshells with me.  I am sure no one wants their support system to feel that way, so here are some things I personally find less than helpful:

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As we all know, when you live with chronic pain, it can be difficult to get out and DO things in life.  As a social worker, former daycare teacher and former Emergency Medical Technician, I have always maintained my CPR certification.  Unfortunately, after getting injured a couple years ago, I let it lapse for the first time in over a decade.  Sitting in class, however, can prove to be difficult for me because my back does not appreciate hours of lecture.

I found a great site that allows me to get my CPR and First Aid certifications online!  I went to “CPR Select” at http://www.mycprcertificationonline.com/ and I am doing it on my own time.  My back is thankful because I am able to take my time and, since my medication and fibromyalgia can occasionally cause “fibro fog,” I can use the online practice tests before taking the final test.  Even better, it is a two-year certification.

I am sure some of my readers are thinking: why would you need CPR and First Aid?  I have always been a big proponent of arming myself with knowledge, especially when it comes to health.   For years my family has used me as the unofficial family doctor because I have always been certified in First Aid.  I kept recertifying even after I stopped being an EMT because I thought it was important to know how to remain calm during an emergency and know what to do.

Basic First Aid comes in handier than you think.  I have, on several occasions, used what I learned in First Aid to help friends and family.  I am the boo-boo fixer, having learned long ago how to properly bandage cuts, splint fractures, treat burns, etc., all stuff you learn in First Aid.

The CPR has never, thankfully, come in handy with a loved one (I did it a few times as an EMT and even have a save under my belt), but the class teaches you more than just the technique of doing CPR, it teaches you about the cardiovascular system and it is very interesting, at least to a medical junkie like me.

The CPR course includes adult and child CPR and choking.  I hope to never have to use this knowledge, but the truth is when you are an aunt who does a lot of babysitting, it’s beneficial to take some time to learn to what to do if a child is ever choking or, worse, not breathing. I can tell you that when kids start eating those darn puffs and cheerios for the first time, there has been more than one occasion where my heart has nearly stopped and I have run through the “What to do if a baby is choking” steps because I hear the all too familiar sound of gagging.

As I have said in previous posts, when you live with chronic pain, sometimes it feels like you are cut off from the world and learning becomes centered just on chronic pain.  I try to combat this by learning as much as I can about anything and everything and getting involved where I can.  In this case, I get to learn something that can potentially help others and I can do it from the comfort of my home, so it’s a double score!

Have you ever taken a course like this?  Has living with chronic pain made you the “Family Physician” too?

Photo courtesy of Caro Wallis via Compfight