Day In The Life...

I live in Florida and we just had a hurricane go through, Irma. Luckily I am in the panhandle so all we got was a tropical storm in our area. Some wind, some rain, and a dent in the van where a branch fell on it from the tree. Weather definitely effects chronic pain conditions and I am no exception to that. For the last couple days I have had lots of muscle spams, sciatica, tingling/numbness, shooting pain, and a higher pain level over all. A bad few days so far.

Since this is Chronic Pain Awareness Month (September) I thought this would be a good day to do one of those "Day in the life..." type posts. I think it will be a good idea to give people information on what it is truly like to have a bad day with a chronic pain condition. This is how it effects me, but I figure it will at least give people a rough idea of how it might be effecting someone in their lives and hopefully it will promote understanding.

So lets start with over night, sleeping. (Sleep? What's that?!? LOL) Due to the increased pain and severe muscle spasms I was not able to try to sleep until 2AM. I had a hard time getting comfortable enough to try and fall asleep because when I shifted position the muscles in my back (just under my shoulder blades all the way down to mid thigh on both legs) tightened up and started to spasm. This causes extremely sharp and intense bolts and waves of pain to shoot through the entire area. When it first starts it is extremely intense and takes my breath away. I then have to mentally remind myself to breathe, slowly and calmly. Somewhere around 3AM or so I dozed off. I woke up a few times due to pain and spasms but managed to go back to sleep until 4:30AM. I've been awake since then (it is now 9AM). I have been alternating between applying heat and ice to the affected areas (alternating; 20 minutes on/20 minutes off/switch to the other/repeat). Neither helps tremendously but when it is like this I'll take what I can get. I am having to shift position every 3 to 5 minutes (instead of my normal 8 to 10 minutes) to try and stave off another episode of spasming. This is not very effective since I still get the spasms and sciatica, it just isn't as intense. I am currently sitting at an 8 on the pain scale of 0 to 10. I took my morning medications at 7AM. Right now I am watching vlogs on youtube.

To get breakfast I had to think of something to eat that would require minimal movement and preparation as standing and walking are very painful for me. With the sciatica going on it is also dangerous as my legs can give out without warning and falling to the floor is not a good thing. I decided to make toast because it required the least amount of standing, bending, and reaching for things.

It is now 11AM and I am still in bed shifting position and alternating heat and ice every 20 minutes. I've also done some very gentle stretching to ease muscle stiffness. I am having to shift between sitting and laying down every 5 to 10 minutes. I can go 10 minutes laying on my right side, but only 5 minutes sitting up. Every 5 minutes sitting up I have to shift around and change which way I am leaning (left, right, forward, back against pillows). My left side is the worst and I can't lay on it at all. This is very annoying shifting around all the time. I'm still at a level 8 on the pain scale but am grateful that it is not getting stronger and am hoping it stays this way (I don't think it will as I have to pick my husband up from work this afternoon). I keep thinking of my mother telling me, as a child, when I was restless "Do you have ants in your pants?" and it makes me giggle.

It is now 6PM. I slept from 11:30AM or so until 2:15PM. Was a restless sleep and I woke up a few times with the muscle spasms. Back to alternating heat and ice. At 4:30 or so I went and picked my husband up from work, which hurt a lot, but it felt nice to get out of the house and into the sunshine. Came home and ate dinner which my daughter had cooked. Now, while alternating heat and ice I am going to do a stitching hangout to chat with friends and stitch for distraction. Sometimes it helps distract from the pain but even if that doesn't happen, it always lifts my mood to be chatting with friends.

It is now 9:47PM and just got off the stitching hangout. Made good progress on my project which can be seen on my stitching blog. I continued to alternate heat and ice during the hangout, shifting positions as needed as well as getting up to walk around and stretch my muscles out. My pain has been pretty steady at an 8 all day, but I am grateful that it didn't go higher or hit a pain crisis (level 10). I really didn't want to be curled up in bed and crying from the pain.

Now I will continue with the heat and ice while I watch some stuff on Youtube or Netflix/Hulu until I am sleepy, then I will try to sleep. I don't know how much sleep I will get but am hoping I get more than a couple hours. Lack of adequate sleep does not do good things for my pain, it also makes it harder to mentally deal with the pain.

That's pretty much my day today. My hope in sharing this is to help people understand what it is like during a bad day. As well as to show that being home a lot due to pain is not the fun, relaxing day off that people think it is.

Where am I?

This is basically a copy/paste of what I posted on my stitching blog to let stitchy friends know where I've been. However, this post is more "on topic" in this blog. I feel bad (Lazy etc) just copying it here, but I know that some of the readers of this blog do not read my stitching blog (which is perfectly fine). And since this is where I should write about pain and depression..well anywhoo..here it is. I could ramble a whole lot more, but this is long enough as it is. I will try to ramble some more tomorrow.

Well, to let everyone know, I am still alive and around. I know it's been close to (if not already past [too lazy to check right now, ok I checked it was Feb. 2013]) a year 8 months since I posted here, longer than that since I posted with any regularity. I haven't been stitching much at all. I put a few stitches (total of maybe 50 stitches all told) in a couple of my WIP's here and there, but nothing major at all. *Pictures people making a a cross with their hands and yelling at her: "No stitching?!?! Sacrilege! Back you floss deserter, back you project abuser, back I say!" [raven giggles at herself]* See? I have lost my mind I tell you!

Another odd image: 2 rather official looking ladies at my front door dressed in black suits, complete with sunglasses (think Men In Black, only women in the suits rather than men) and ID wallets. Their badges have the symbol for cross-stitch of a hoop with fabric and a needle parked in said fabric. The words surrounding them are "International Needlework Association: Cross-stitch Div.: Project Protection Agent". They hand me a court order allowing them to confiscate my stash, WIPs, UFOs, and even my Ghingers for their own protection from my abusive neglect. "Now Mrs. Shadowborne if you would please surrender your Needlework ID, Scissors License and Precious Metals Needle Approval Cards. Yes than, very well.  Thank you very much and have a lovely day!" (trust me, it seemed much funnier in my head...oh well never said I was good at comedic writing  LOL)

I signed up for an exchange (due back in February) in the hopes it would help me regain my stitching bug. I have stitched on it. It sits three-quarters completed (would still need put together etc) in my stitching bag (along with 5 other WIPs) and I just can't find the energy to finish it. It is so late and I feel so horrible about it. I have told my partner and she is being so wonderful and understanding about it. My brain however uses it to beat me up. Why does depression have to include mental self-flagellation via self-insults and loads and loads and loads of guilt? It doesn't help, just makes it worse.

What happened? Depression is what happened.

The truth is: I just haven't been able to drum up the desire to stitch, or when I had a tiny inkling of desire, I couldn't drum up the energy to actually do it. My depression finally hit the really bad stages where even the sadness and despair go away, leaving nothing behind....emptiness.

Those woods I posted about a while back, I got lost again I stayed lost and couldn't find my way out. I knew my depression was bad, but I didn't realize it could get even worse, but it did.  I'm not sure that I have found a way out yet, but I am at least forcing myself to try to resume activities I know I used to enjoy doing. But it is so hard to fight back when I can't really do anything but sit in bed all the time. The pain has been insane, and pain like that really does mess up the chemical balance of the brain and nervous system.  In some ways the depression and it's accompanying dissociation is comforting because it removes a lot of emotions, thus I don't feel guilt, emotional pain etc. Instead I just feel empty, vast sweeping blackness..nothing at all. I've had a day here and there where I did have some feelings, but not often, not for long, and not real good feelings/thoughts. Though, there is one ray of sunshine finally: those days with some emotion have been increasing in frequency so that's good. I know that in order to feel better, I have to allow myself to feel at all. Of course the first feelings will include all the guilt, anger, frustration, fear etc. that I have been hiding from and the idea of feeling those things in order to move through them is extremely daunting.

I have days where some feelings are coming back, and when they do I am struggling to let them, to not shove them back down. It is terrifying. Part of me truly wants to stay in the woods, the deepest darkest part where there were no real emotions more often than not. My last post, I tried to end on an improved note. I *did* go stitch (about 15 stitches before giving up) that day though.

Thank you to all those who left me such wonderful comments! I read them all, obsessively more than once because they give me a warm & good feeling inside which is better than the empty nothing I had 99% of the time. I fully intended to reply to each one via email and when I realized a few weeks had gone by I just didn't know what to do. Reply so late? Let it go without telling them what their words mean to you? The self talk turned into how horrible I am, useless, etc etc., and I became afraid of the response I'd get if I replied after such a long time. I felt I would deserve it whether it be an angry/upset/disappointed/whatever response to my reply or no response at all. So, as with everything else for the last few years, I did nothing and just used them as more ammunition for those times when my brain played "beat up the birdie girl!". I truly am sorry for not responding to those comments before now and I appreciate them a great deal, thank you thank you thank you!

I am not posting any of this to make people feel bad for me or anything like that. I am posting it (terrified but going to do it anyway even if it means I have to ask DH to click the publish button) for a few different reasons. One to explain where I've been. Two, to release some of my feelings in hopes my doing so may do some good for someone else. There are other reasons as well, but I think I've rambled quite too much about my depression in what is supposed to be my stitching blog. If you've read this far, Thank You and give yourself a pat on the back, Well Done! (and no I do not mean that sarcastically). I appreciate it :)

Depression (Severe) SUCKS!

Ok this is my 9th attempted post that has been sitting in the drafts folder for a while. It has taken me 2 weeks to write this one as it is. "OK .......here goes...click publish Raven! click it!"

New Poems

I'm not sure how good this is, but I got bit by the need to write about 10 minutes ago (it is 9:01 AM, 1/22/13). So I opened a word document and started. After a bit of tweaking this is what came out. I am very pleased because this is how I used to write. Get that feeling of "needing" to write, right now..no waiting. Grab paper and a pen/pencil/whatever and just let the words come. When I had written enough for that feeling to go away I would then look over what I wrote and edit things. Sometimes it was an essay that came out, other times a poem (or multiple poems)..they just tended to pop into my head all ready to go, all I had to do was write them down. I doubt I follow any "rules" of poetry, but that doesn't seem to be the point. The point seems to be to try and put my emotions into prose as accurately as I can. 

I've been struggling for the last 12 years to be able to write the way I used to. It is finally starting to come back. That status I posted the other day about pain taking bites out of those who suffer from it, was written because the need popped up. I've had the need pop up more in the last couple weeks than it had in the last 12 years. Anyway, this isn't perfect but I do like it, so I thought I'd share it. This came about because I have been asked how/why I would willingly allow apathy and depression to take over, why I would give up and just dissociate. This seems to be how my mind wants to answer those questions for right now. Another thought that keeps popping up is that, in part, it is a rest period. A time for me to just stop fighting and allow my batteries to recharge, so to speak. It takes a great deal of energy and effort, conscious effort (both mental and emotional), to push through the pain and try to live some semblance of a life. It takes a lot more effort than many people realize, want to believe, or even consider. Sadly only those who also live with constant pain/illness seem to truly understand it fully. So I'm guessing that this poem/prose/whatever you want to call it, is an attempt to help people understand, or to at least help them try to understand. 

Darkness Brings Relief

Author: M. Hull (Jan. 22, 2013)

Into the darkness my heart has fallen

                Feelings forgotten

                                body ignored

Nothing penetrates the blackness surrounding

                floating lost in the void

Neither emotional nor physical pain can reach

                deep into the darkness

                Inky depths that protect so sweet

Apathy wraps gentle wings about me

     pulling me in with whispers of peaceful serenity

                promises of relief

Snuggling in deeply

                an escape desperately sought

                a coldness quickly wrought

                yet the heart and soul care not

For the darkness  

brings relief to a desperate soul

Immune to the cold which surrounds me

Chilling self and those around me

Creating an icy boundary

few dare to cross

Leaving me to comfortably wallow

                free floating

                at peace

Deep within the darkness

 the darkness which brings relief

Ignorant of the blackness about me

Unaware of life’s buzz without me

Floating in quiet solitude

Dissociated from the world

mind and soul freed from the hell

the hell of my own flesh

With silken cords does the darkness bind me

                a willing captive

                a slave to darkness’s relief

END

Not too bad I don't think. I'm just glad to start having that need to write that has been apart of my life since I was a kid finally coming back. 

P.S.: To remmy and Sterling This one is for you two for helping me find a way to get my writing back. Thank you both so very much for your ideas, they really did make a major difference! and, as always For Ron, my soul mate and biggest supporter. Thank you for everything you've given to and done for me!

Below are a couple other poems/prose that came to me. This one is definitely not done, but when I got that far my mind jumped to a different direction/wording and I moved to that. It seems to have worked much better because that poem is pretty much complete, just needs a final edit, but I'm going to post it anyway.

Through trial and error

And life altering mistakes

I hoped, dreamed and prayed

That some day

Some day

I would find the one whom I sought

The one  completes me

Making me whole

As his love filled my soul

END

The second one, which popped up so fast and urgently that it overrode the

first one completely LOL It's not done, but I'm so sleepy I can't figure out

where it needs changed LOL

With each day I lived through

continuing to breathe

I tempted the fates

To deny what I need

Mistakes in my past

errors in judgment

Love which didn't last

as I wept silent tears

the holes in my heart and soul

ached and cried out

loneliness vast

Through bruises, tears, hurt and pain

through trials, errors, and things full of shame knocking me to my knees

again and again I fought on, seeking that one

Yet something within me refused to quit

I couldn't give ground, give up or give in

From the ashes I rose again

I fought on

Stronger than before

Determined to win

seeking that one

that could fulfill me from within

Then the day came that I opened my door

You stood on the stoop with a smile

Our eyes locked and our nerve endings

all at once ..cried out that w be together at once

As my heart filled with desire

My soul rose ever higher

        

A quick second or two

That lasted forever

As our hearts grew together

and our souls entwined

And I  knew at once, my dream

                was realized

Just a fleeting second in time

Every fiber of my being screamed together

letting me know you must..always...

             be mine

Despite obstacles barring our way

We held on until that fateful day

when at last, the two became one

As we lay together, limbs intertwined

Our souls touched each other

filling the holes in our hearts

With a love for all time

END

The Voracious Beast Of Pain

The worst part of living with chronic pain, is not the physical pain, nor the psychological pain that comes with it. It is the knowledge that every day a tiny piece of your heart and soul are devoured by the pain, never to return. Pain is hungry, never satisfied and over time it grows worse as whatever injury or illness causes the pain progresses and worsens. Each bite it swallows is a tiny bit larger than the last. Being eaten alive daily by a monster with a voracious appetite that can not be seen, touched, heard, felt, or smelled by others; only the sufferer's 5 senses are totally aware of it., While others walk away from, judge, ridicule, or (do) worse to their friend or loved one who now has a chronic illness or chronic pain condition, taking with them another little piece of the sufferer. With each negative word, each snide comment, they steal another small piece; never realizing the damage they are doing and have done. They can't. They can't put themselves in our shoes. Why not? It's quite simple, because to accept that a human being can continue to live day in and day out in extreme pain every day is absolutely terrifying; if it can happen to their friend/loved on then it can happen to them. Things that terrify people are things the people chose to actively (and some with great vigor) go out of their way to put down, minimize, marginalize and ignore. Why? Because it could be them. People despise what they fear, they always have and so they must vilify it; make it evil and wrong in the eyes of other people. As a result we are called malingerers, players, addicts, lazy, manipulators who just want to live off of other's, mentally disturbed and so much more. People are terrified of having their own frailty and mortality held in front of them like a mirror. No one wants to be reminded that their bodies will not always be strong and healthy, that they will grow old and weak and eventually die. To admit that this occurs, is to face the fear of not just death, but the terror that death is the end and there is nothing more. That their body is just as frail and prone to infection, injury or disease as the bodies' of the millions of chronically ill people and those who suffer with chronic pain every day. That they are not immune and it could be them one day. The fear is overwhelming and rather than face it and open their hearts and minds to the true compassion that does exist in every human (there is always a good to balance a bad; not everyone utilizes both sides of the self..usually just one or the other) being, they run from it and do everything they can to make it impossible within their own minds to even consider that a disabled/illl/suffering person did not bring it upon themselves; or they do their best to just ignore the disabled/ill/suffering person as a liar. For them, it is easier to live with the self-delusion than to open their hearts and minds to truly care for the sufferings of others. But I digress...

The pain, it is a insatiable beast, devouring pieces of it's victim every day. Taking away their strength, will to survive, and lastly hope for even a 1 minute respite.What happens when it is all gone, when the beast has eaten the last shred of hope? When the pain has finally eaten that last sliver we die, and we do so with thanks that the pain is finally over. This can be either a physical death, or a mental/emotional one where the sufferer's mind (totally overwhelmed and completely exhausted) gives up the fight and just leaves the body; leaving the sufferer comatose, catatonic, totally dissociating or pushes them to take their own life because nothing is left for them. Their hope is gone and only further suffering remains.

Before that point, we struggle; day in and day out to survive. Knowing that chronic pain has been scientifically proven to shorten the lifespan, shrink the size of one's brain, create secondary medical conditions (high blood pressure, heart issues, autonomic nervous system dysfunctions. etc) not to mention the damage of the meds we have to take just to be able to sit upright without screaming. We are not addicts. We are prisoners of our own bodies that are sick, or broken. Yet people need a scapegoat, someone to blame and it is (and always has been) easy for human beings to turn on the weakest, most vulnerable members of the group. After children, who are the most vulnerable members of a society? The sick, injured or disabled. Those who do not have the energy and mental strength to maintain the sustained and continuous battle that would be necessary to earn the respect we deserve just for being human beings.

Why is such a battle even needed? Don't we have enough fo a fight on our hands trying to make it through each day with a disabling illness or crippling pain?

How long can one survive this way? I do not know, but I do know this, when the time comes that my life ends, I will be thankful. No matter what awaits us after we die; be it new life, eternal life in heaven, or nothing at all (just wink out *pft* gone), the pain will be gone and peace will replace it (or just nothing, which still means no more pain, no nothing, gone..over).

Constant, never-ending pain, is a voraciously hungry, insatiable monster that eats its' victims a tiny bite at a time.

Many times I wonder, after so many years, how many bites are left in me?












I'm not sure....but I feel like I am down to just a few measly crumbs.

Poems From Pain

I wrote three poems the other night, one after the other. They're written on the back of envelopes because when the need to write them hit, it was extremely urgent and didn't want to wait until I found my poetry journal. I used to write a lot, but lost the desire during an abusive relationship in which I was ridiculed, yelled at, and physically "punished" for writing. Since then writing has become very difficult for me.

I realize I have been gone for a very long time from my blogs and I am sorry for that. I finally have some idea as to what happened with me and as my thoughts settle down, I will eventually write and describe what happened. I am sure I am not the only chronic pain patient who has reacted the way I did, specially those who have dealt with chronic pain for many many years.

Anyway, here are the three poems I wrote the night before last. These poems are copyrighted to me and can not be reprinted, re-posted, downloaded, or used in any manner by anyone else, without my consent.


The Bottomless Pit
© M. Hull Jan. 2, 2013

Lost in the depths of darkness
The bowels of despair
This bottomless pit...
How did I get here?

Stuck,at the bottom of a deep well
Looking up for any sign of light
  none to be seen

How did I get here?

                                                                                               
Praying, wishing, hoping to be saved
   prayers... unanswered
   wishes ...a fool's errand
   Hope...fades to nothing
   nothing left here
   a barren heart
   desiccated soul

As day after day..
   week after week
   month after month
   year after year
pain tears at my soul
    ripping it to shreds
   devours my heart
   destroys what little is left of me

still I wonder..
How did I get here?

I fought for years beyond counting
holding tight to hope
   ...all for nothing

Now here I sit, deep in this pit
   this pit of despair
   with pain my only company

How did I get here?

easy...
I got here through hours, days, weeks, months...years
   unending pain
   increasing disability
It took all I held dear away from me
all abilities...gone

until all that was left...

Is this pit of despair

END


Darkness of Despair
M. Hull © Jan. 2, 2013

I am lost
   blind
   deaf
   dumb
here in the dark

Pain is all I feel

Pain I fought for years
The fight in me is no more

                                                                                   
why bother?
  I can not win
   The pain always overwhelms me
   the dark always surrounds me
   until I am drowning
   the fight washed away


Blind
Deaf
Dumb

Nothing to see or hear
my cries for help go nowhere
   for there is no help, no succor, no healing
   this pain will never end

stuck forever... lost forever
drowning in the tears of pain
deep within the the darkness of despair
END


Grip Of Apathy
M. Hull © 2013

Cold fingers of apathy
reach out and grab me
pulling me down
   into the abyss

No struggle can beat this
no strength can break it's grip
try as hard as I can
..it always fails

falling
   falling
       falling

down
   down
       down
into the deepest darkest pit of despair

                                                                           
swallowed whole

Now I live there.

END


Basically what happened is pretty simple, and so dang common for those who live with constant pain or illness. With the Cymbalta came slightly lowered pain levels. This allowed me to begin to get an actual life back. A life where I could go to the store, go visit friends, go swimming, even go away for a weekend with my DH and have a blast. I was able to cook a few nights a week, do some cleaning every day. Pain crisises became rare as the medication removed the intensity, th sharpness of my pain. Yes I still hurt, but it wasn't as sharp or intense as without the Cymbalta. I got used to this , loved it and threw myself into it with great relief and happiness.

Then came a medication screw up thanks to insurance. So I had to go 2 weeks wihtout Cymbalta. As a result my blood level dropped and my pain went back to its usual 8-10 every day, with the same old sharpness and intensity (butcher knives stabbing the joints instead of a fist in a boxing glove..sharp pain instead of dull) and I ended up back in bed. It took 6 weeks to get the Cymbalta back up to proper blood level. But even then it was too late, I had lost my "new life" even though it was still at the beginning. This hurt soooooo much, to get some back and to lose it again.

I gave up. I no longer wanted to fight back. I was tired of the emotional hurt that comes with losing the new friends you made, losing the ability to do things, losing the lower pain levels etc. etc. So I stopped trying.

It took me until yesterday to figure out what was going on, and it didn't start bothering me until a couple weeks ago. Prior to that I was perfectly happy to be stuck in apathy and doing nothing. It is safer.

That's pretty much it. Hopefully I can write more in depth about it.

Video Blogs on YouTube

Thanks to it being more difficult for me to sit up for long periods of time, I decided to start doing video blogs (Vlogs) on You Tube. I did a group of videos that basically give my history of chronic pain and how I got to where I am today. Since that story has already been told on this blog in the post 30 Years Of Chronic pain, I won't include that videos here. However, I will post other videos to the blog for people to watch if they want to.

I did one the other day about safety with medications. I also did a written post on this blog for the same topic, so I don't think I need to link that video. However, today I started a series of videos on judgements. Since people with chronic illness and / or chronic pain are judged in many different areas, I have chosen to do this topic as a series of videos. For the first one I chose the topic of how chronically ill people and people who suffer from chronic pain are judged for their diagnoses such as being told that illness doesn't exist, it's all in your head, you don't look sick and more. I hope the video is educational and of value to people who watch it.

I also made a request of viewers and I wish to make the same request of my blog readers also. So here is the video explaining my request.

Thank you everyone!

Taking Proper Care of Prescription Medication(s)

Many chronic pain patients are on different medications. Some are for the pain and others are for the condition(s) that is/are causing the pain and or depression. Many of these medications can be controlled substances, or have a street value as addicts have found they can give the “high” that they seek. Surverys asking teenagers if they have taken medications out of a family member’s medicine cabinet have shown that many teenagers have done just that. Also there are “parties” out there called “pharma parties” (aka “candy dish” or “trail mix” ) where people dump different pills that they get out of those medicine cabinets then just take a handful in an attempt to get high. These parties have resulted in overdose deaths from heart or blood pressure medications or even narcotic pain medications, psychiatric drugs, etc. all being mixed without any knowledge of what they are doing.

It is a chronic pain patient’s responsibility to keep their medications safe from theft. The best way to do this is to keep the medications in a locked box or safe of some sort, not in the medicine cabinet in the bathroom or a cabinet in the kitchen. All medications should be stored in a locked box or safe. If more people took their responsibility seriously less thefts of their medications would occur. As a chronic pain patient here are some tips to keep your medications safe.

1. when picking meds up at the pharmacy, be careful to not advertise that you are picking up pain medications. Always check to be sure the medications are correct before leaving the pharmacy.
2. put the bottles in a locked box or safe and make sure that you do not share the location of the key or the combination with others. Do not leave the lock box in plain sight either.
3. remove labels from all empty prescription bottles before throwing the old containers out (or reuse them to store small items such as screw, nails, beads for crafts etc.) or recycling them
4. shred the labels to ensure that someone going through your trash can not read the label and know you are on pain medication
5. shred pharmacy receipts that list the names of your medications for the same reason as number 4
6. Do this for all medication, both prescription and over the counter

By protecting your medications in this manner, you greatly reduce your chances of having your medications stolen by a family member  or friend. You also decrease the chances of drug addicts finding out what medications you are on by going through your trash.

You are responsible for how you handle your medicine and being careless is not an excuse, especially in today’s political climate of removing pain meds from people. The more often you have to call for lost or stolen medication, the more likely you will be labeled as an addict or diverter of your drugs. Now, just a single instance will be enough to be labeled and having your pain control revoked. So take your responsibility seriously.

Anyway, these are the things I do to protect my medicines, both prescription and over the counter. If I am missing anything, or anyone has ideas on better protections, please feel free to comment, or email to let me know!

What NOT to say...

People who live with and suffer from chronic pain and chronic illnesses often hear different statements. Some are intended to be helpful and kind. Others are meant the opposite way, often it seems (to me anyway) that the people that makes such mean comments are almost trying to protect themselves from an illness or pain by distancing themselves from the sufferer they are speaking to.

Below are some videos about things NOT to say to someone who suffers from a chronic illness and/or chronic pain.


This first video is from a young woman in England. She suffers from a great deal of pain every day as a result of damage to her back. Through her YouTube videos I have gotten to know her a little bit and she is a truly warm and wonderful person. Sara, without even knowing it, helped me a great deal in the past 6 months. I have watched and re-watched her videos, especially the ones where she was still a student in college (University). She is a pharmacist, which is what I had been ready to start college for if my back hadn't blown out a month before school started. Her determination to make it through school and still do her best was very inspiring to me. Being someone who lives with extreme low back and pelvic pain I can totally relate to how much pain she was living with, struggling with, and barely making it through each day with. But SHE DID IT! She graduated! I am so very proud of her for doing that because I know how hard that had to be. Anyway here is a video she posted titled "Things to think twice about before saying out loud to someone with chronic illness" 

This second video is by a young lady who suffers from Interstitial Cystitis (IC). This is an extremely painful disease that affects a large number of people, though most (doctors included) have no clue it even exists, or they have very faulty information. Ir causes severe abdominal pain (much of which is centered around the bladder), severe pain with intercourse, frequent urination, and frequent strong urges to need to go to the bathroom. There are other symptoms as well, but the biggest one is PAIN. Lucky for Amy she had a stimulator placed which has helped her a great deal. She has been able to return to college and is hoping to become a Urologist. 

Please, when you are talking to someone who has a chronic illness and/or chronic pain, please think twice about what you will say. Take a moment to put yourself in their shoes and then say things that will be supportive and helpful rather than dismissive, hurtful, and judgemental. None of us ASKED to be sick or in pain, yet here we are and just doing the best we can day by day.

Taking Stock In Attempt To Change

For the last 18 months, and probably longer, my pain has been in control of my life not the other way around. When my pain got worse a few years ago I adapted and still managed to function. When it got worse in April 2011, I could not figure out ways to adapt as nothing seemed to work. As time went on, depression increased, mobility decreased and pain took control. My old methods for dealing with and living despite my pain are no longer effective with this new level of pain and symptoms (no standing/walking more than 5 minutes). So I decided to try and get some help. I can't locate a behavioral therapist who deals with chronic pain in my area, so I ordered some books.

I am currently working through "The Chronic Pain Care Workbook" by Michael J. Lewandowski, PH.D. I already knew that my coping mechanisms are not good and in the case that I've been using dissociation to deal with my pain, they have degenerated into very unhealthy mechanisms. I bought the books back in early February I believe. Since then I've read a few pages in each one (I bought 4), then did what has always worked for me. I allowed my mind to analyze and think about the ideas these books represented.

It is very hard for me to admit that my actions and thoughts are contributing to my pain. It is difficult to admit that I lost some of my ability to manage my pain effectively a while ago, and lost the rest of it in the last 18 months or so. It is hard to admit that I gave up. I wanted so much to believe that I was doing everything I could. That I was trying to function with the pain, but the truth is I gave up. The pain got so much worse, with new symptoms and the inability to stand for more than 5 minutes, no real help from my doctor, and I gave up. Now I am sitting here crying because this is the first time that I have faced head on and admitted clearly that I gave up. Instead of saying something like "yeah I've given in BUT <insert any but here>", the truth is I was kidding myself, there has been no actual "but" for a long time. I do occasionally fight back and try to do things like some laundry or housework or cooking, which increase my pain and when that happens, I give up again for a while before trying again. But those attempts are few and far between.

Why am I sharing something that to me is emotionally painful, humiliating, terrifying, and so intensely personal? I'm not really sure what all my reasons are, but the one that comes to mind immediately upon asking myself that question is that I want others who may be in my position to see they are not alone. In addition I am hoping that by sharing the truth about my own mental, emotional, and physical ability to fight/live with my pain, that those who are in the same boat as me, can see that there is still hope. I have reached a point where I am sick of this. I want my life back. The only way to achieve that is to work at it and learn new ways of coping, since obviously my old ways aren't working. Sitting around waiting for something outside of myself to give me back my life obviously doesn't work. So I guess it's time to get off my ass again.

In the book I mentioned above there are lots of exercises. These are designed to help you see where you are now in dealing with your pain. What is working well, what is not working at all, and what could use some improvement to work better. The beginning of the book, like any other self-help book or even therapy with a therapist, starts out with taking stock of where you are right now. Identifying what works, what doesn't etc. Also identifying your readiness to change, your motivations. I understand all of this having gone through it before with and without a therapist when I was dealing with healing after abuse. I've done these things in conjunction with a therapist in order to help my daughter heal from abuse. Many of these first steps are the same.

What surprised me was the fear reaction. Having the fear of facing old abuses in your past, acknowledging the damage it has done and the negative effects it has on your present all made sense to me. Who wants to face such painful memories, accept them, work through them and all that. The fear made sense.

But now, accepting this fear of dealing with my own pain means accepting that I have failed. For some reason I am finding it much harder to accept that I am afraid of trying anything. My biggest fear is increased pain and decreased mobility, followed by fear of failure. For some reason this isn't making sense to me. I keep asking myself "Why am I afraid of my own pain?, heck I've lived with it for 30 years (varying over that time from mild, to bad to worse to now [horrible]). I know I will live with pain the rest of my life. Why am I afraid? Is it really that simple as fear of change?". It isn't making sense to me why I am so scared.

And with so very little for me to look at as things I can do well (in the sense of a job or productive activities), the idea of having failed in dealing with my chronic pain in my daily life is terrifying and painful. I am feeling very vulnerable and very sacred to look at all these things, to see exactly where I have failed. What if admitting all this makes people around me decide I'm no good? What if it makes me decide I'm no good (seeing myself as no good is worse to me than others having that opinion)? What if I fail at trying to change? Heck since I've already failed, what are the chances I can succeed now? I've tried to fight over the past 18 months, but failed time and time again.

But I don't have a choice, I have to try. So I will take my anger and fear and try to harness it as a motivation to get the changes I want. To get my life back.

One of the exercises was to draw a pie chart that represents how I view the way my pain problems affect my life. Included are the pain issues themselves, then social issues and psychological issues. Here is a picture of the pie chart I drew. It clearly shows that the pain issues have overtaken everything else in my own mind; I have allowed the pain issues to overshadow everything, to take over. This ticked me off and scared me and I want to change it. So here's hoping I can do that. I will try simply because I want a life, my life, back.

The book then goes over the Stages Of Change and I am in the "Open to thinking about change, but...". I know Doc's can't fix me. I know that I will have pain for the rest of my life. I know that what I've been doing isn't working. I know my fear of trying to change and failing, isn't going to help. I want to change this pie chart, I want my life back. So now comes working through the fear and getting rid of it so I can take the steps necessary to manage my pain better.

Knowing how I tend to work, when it comes to having to fix things mentally/emotionally/behaviorally, I will probably revisit these topics a few times. Hopefully on this blog so my journey can help others, but it is possible that not all of it will show up here, depending on how personal it is or if the thoughts etc affect someone else, not just me. So most likely I will have to revisit this topic of my fears until I understand them well enough that I can counteract them with more reality based thinking.

Here's hoping that I can get my life back.

Cartesian Model and Gate Control Model of Pain

Living with chronic pain is extremely difficult. With new research have come new ideas and understanding about how pain works. Sadly physicians, people in general, medical personnel etc. are still being taught an outdated model for pain. That model is the Cartesian Model of Pain. This basically says that all pain is a direct result of tissue damage/injury and every person will respond in the exact same manner to the same injury. In other words a broken bone gives a certain amount of pain and every person will have the same amount of pain as a result of that injury.

Research has proven this to not be true. PET scans and fMRI's have shown that the parts of the brain responsible for pain sensations light up even when no specific injury/illness can be found for that patient. The Gate Control Model Of Pain (by Ronald Melzack and Patrick Wall) says there is a gate, the spinal cord, which allows pain signals to travel to the brain. When that gate is closed, no pain signals get through. When it is open, pain signals get through. Further they have shown that the gate can be opened by injury, emotions, mood, thoughts and memories.

The Gate Control Model makes sense to me simply based on my own experiences with my pain. Most CP (Chronic Pain) patients know that stress, levels of high emotions, focusing mentally on their pain and more directly affect their pain levels. We often tell each other about how high stress levels, anxiety, depression and more will increase our pain. We say this because we have experienced it. I know that when I get angry, my pain rises. I recognize that when I am angry my body tenses resulting in my muscles tightening which leads to spasms, pressure on the injured areas and results in an increase in my pain.

Despite the research showing that psychological and social factors contribute to a patient's experience with pain, most physicians and other medical professionals, still work under the Cartesian Model because that is what they are taught in school. Most physicians do not receive training in chronic pain, or pain management. Instead they are taught the scientific method and as a result see pain as a cause and effect only so far as physical disease/injury (cause) results in pain (effect). Many do not realize that other issues also effect pain. This is not good as the result is that people who live in chronic pain are not receiving the optimal therapy for their pain. They are not being taught things that will help them manage their pain.

It doesn't help that most people also have outdated ideas of how to deal with chronic pain. We are not taught that chronic pain exists. Most people's experience with pain is acute pain. You sprain your ankle, rest it and allow it to heal. This works for acute injury, but does not work for chronic pain. In fact this method of dealing with chronic pain will make the pain worse. Included in the area of what works for acute pain but not chronic pain are "no pain no gain" and "push through it". These beliefs actually cause more mental anguish and suffering for chronic pain patients.

Chronic pain is affected by the original injury or disease (and progression of same), the people around you, your own thoughts/beliefs about pain, and more. So far the most effective treatments for chronic pain have included methods which include all these areas, rather than choosing one or two and ignoring the rest. Many do not believe that mood (for example) affects pain but consider this: You have had a bad day at work, your mood is not good, and by the time you get home you have a headache. Most people have experienced this. Part of the reason is that the area of our brains which control our emotions, is one of the areas that lights up in response to pain signals. In a person with chronic pain those stressful emotions can trigger pain signals and vice versa.

Ok, this entry has focused on factual information. Now I am going to write a more personal entry.

How Do You Deal With This?

This was written at 5:10AM on March 25, 2012 in my written journal. I was having great difficulty sleeping as usual and my mind was running with thoughts. I wanted to post on here but didn't want to disturb my husband who was asleep beside me by setting up the laptop in the bed. So I wrote in a notebook and am copying it here.

Sunday March 25, 2012 5:10AM

How do you fight depression and apathy when your physical ability to move is so screwed up? I used to fight depression by doing things such as going for walks, cleaning the house, taking a drive, and similar activities. Of course there was the mental effort as well such as recognizing when I'd start thinking life sucks or I'm a bad person etc. I would consciously force my mind to think of something else then distract myself by getting up and doing something.

I am failing at fighting my depression and apathy now. I can't use physical activity as a distraction because I have to pace myself. Cleaning, for example, gone are the days when I could tackle a room and do a heavy cleaning for a couple hours in a row then move on to the next room. I used to be able to clean and rest in 10 -15 minute bursts. Now I have to clean in 5 to 10 minute bursts; clean for 5 to 10 minutes, rest (sitting down) for 10-15 minutes to gauge my pain level, clean for 5 to 10 minutes and repeat until I hit a 7 on my pain level or the cleaning is done, whichever comes first. More often than not, the 7 comes first now since I start most days at a 6 and can't stand for more than 3 to 5 minutes, and my pain steadily rises while I'm on my feet. It used to stay more constant and the cycle was more for me to be able to gauge my pain level than because I couldn't stand. It doesn't take much to make me go from a 6 to a 7, especially if I am moving around. The resting time just reminds me that I am disabled. It serves as proof of the negative thoughts that cross my mind, making it harder to fight those thoughts since they are true. Thoughts such as "I can't even vacuum the living room in one go anymore"--true. "I can't stand long enough to cook dinner anymore"--true.

Every attempt I have made to get back on a schedule has failed. I can do it for a few days, maybe, then its gone. Am I trying to fix too much at once? According to the chronic pain books I bought I am. But starting with just a small thing like taking a shower every day feels like it isn't enough, like I should be doing more. Then, because the shower energizes me and I feel I should be doing more, I do other stuff as well such as cleaning or playing with Bridgette and send my pain sky-rocketing for a day or two (sometimes more). This makes the next day's shower impossible because my pain is too high and I can't walk right, if at all and boom I'm back where I started.

Maybe I need to start with the mental stuff more than the physical? Maybe I need to change how I see only what I can't do instead of what I can do; change only seeing what I haven't done instead of what I have done and change telling myself I can't do this or that out of fear of the price I'll have to pay for the activity either through much higher pain levels, pain crisis, being unable to walk, or a combination of unable to walk and more pain/crisis. The result of this fear of the cost is that I do nothing, feel like crap about it, mentally beat myself up and the cycle continues. So how do I change this? The same way I changed my self-esteem from "I never do anything right" to a more balanced view by writing lists each day of things I did right, thus re-training my brain to see both? I'm not sure how to make that work in this situation. Yes my self-esteem has taken a hit, but I haven't reverted to seeing myself as a bad person, no good, or unable to see the things I do correctly. Maybe I just need to change the negative self thoughts to a more positive statement. For example instead of saying "I can't cook dinner anymore" change it to "I can cook dinner if I plan ahead, pace myself, and use the bar stool like I did when I cooked Thanksgiving dinner."

Changing those thoughts is so hard, in part because I hate my condition. I hate what it has caused me to become. I hate the idea of yet again having to "fix" myself. It is exhausting! I've been pretty much dissociating  from my life because it makes it easier to be stuck in bed every day, in pain, physically disabled, and unable to do much, if anything, at all. By dissociating and not really thinking I can ignore some of the physical pain (which is good) but I can also ignore everything else that bothers me. It shuts off the thoughts of being broken etc., shuts off the fear of movement increasing my pain because I'm not moving or trying to do anything as a result I don't fail at doing things and the self-recrimination doesn't start. Of course this means I also don't have anything I can look at and be proud that I accomplished it. But in a way that is also good because having pride/joy in an accomplishment makes me want to do more, so I do and my body slaps me back down hard, usually with a pain crisis that lasts at least a couple days. During those couple days Ron has to help me on and off the toilet, he has to help me put on or take off clothes, etc. This is humiliating to me so I want to avoid it.

So where is the middle ground? Is there a middle ground? How do I stop mourning for everything I've lost to this pain? I was doing okay with it until the time I fell and hit the marble topped end table and added another fracture to the SI joint about 6 years ago. This resulted in constant swelling and a large jump in my pain level. I had started to accept the new level and was doing better until I received yet another fracture line when I fell on Christmas Eve 2010. It is since that last fall that I've gotten angry, depressed, sad etc. and can't seem to get myself out of it. I know part of that is because I am stuck in bed every day and can't stand for more than 3 to 5 minutes and because I know that fall was not my fault. Like the fall a few years ago (the table one) this latest fall that resulted in a new fracture line was directly caused by someone else's actions not my own and it wasn't an accident. The fracture wasn't intentional but making me fall was. When I fell I hit the left SI joint, right at the base of the scar that is directly above the joint, on the end of the chair at my computer desk in the living room and I hit the right SI joint on the edge of my desk; both at the same time because the chair was pushed in close to the desk and there wasn't enough space for my fat butt to go between the two and just hit the floor. This chair, like the end table, is solid wood and built really well. Ron's dad built a couch, two chairs, 2 end tables, and a coffee table for Ron and his first wife many many years ago. They are very solid pieces of furniture. I can't remember how many times I have broken my toes by accidentally hitting the legs of those pieces of furniture. lol

I am terrified that I can't win this time, that I just don't have it in me anymore to put myself back together again, to keep fighting. No I am not suicidal. I mean that I don't seem to have it in me to learn how to function despite the new normal for my pain. I seem to prefer to just space out, dissociate, rather than face it and fight to get some semblance of a life back.

Everything just seems like so much more work, even the simple little things I can't just do them without thought and planning first. I have to think of every step involved in that task, plan how to best complete the task, come up with a way of doing it in a manner that causes the least stress to my body thus the least impact on my pain levels and after all that, then I do the task. This takes a lot of mental and emotional energy and often seems overwhelming. If my first plan fails I have to start over trying a different way, over and over until I find one that works. Then this is complicated further by the variable nature of chronic pain, some times what worked one time, will not work the next time which results in having to think and plan again. It is exhausting to have to do this for everything in my life from simple things like reading a book to Bridgette, taking a quick shower (HA HA no such thing as a "quick" anything anymore), doing laundry to everything healthy people do without having to think of every little action/movement that goes into an activity and plan how to do each movement. It is exhausting mentally, emotionally, and physically and even when I do manage to find a way to do something, I still end up with a rise in pain levels though that rise is not as high as it is when I don't plan things out.

What makes it worse is to have healthy people in your life who do not understand and just saw me as lazy or faking it to get attention (such as my family members [the family I was adopted in to when I was 2 years old]). On this issue I am fairly lucky because the people in my life do get it and do understand that chronic pain can vary from day to day (or even multiple times within the same day) and thus affects what I can and can't do from one day to another. Over the years I have lost the friends and family members who did not understand either because they left me or I chose to end the relationship.

I am just so exhausted and feel so discouraged, afraid, and lost.

Yesterday's Doctor's Visit

Yesterday was my pain management doctor's appointment and since Ron (my husband) was home he went with me. When the doctor finally came into the room it started out as usual, him not really looking at me but focusing on signing the prescriptions the nurse had filled out. Though he was a bit surprised when he entered the room to see my actually laying on my side on the examining table.I usually do not do that, instead I tough it out sitting in the chairs and do my best to hide my pain level. I choose to hide showing it physically because  I am afraid of being accused of lying or acting it up to make it appear worse than it is. Both are things I have been accused of by doctors in my past and 2 different nurses in my current doctor's office. I was hurting a great deal, finally gave in and laid down to get the weight/pressure off my left hip. I couldn't stay laying down for long cuz the right side started to hurt even more, so I had to sit up for a bit and when that started to hurt too much (after a minute or two) I would walk around the room; rinse and repeat. This prompted some questions, which I answered honestly, but he didn't comment on my replies.

I asked about the results of the cat scan that was done in January and was told there was nothing he did not expect regarding my sacrum and SI joints. He then said there was nothing exciting about my lower back either. Since I didn't get to read the report I don't know if that means everything is pretty much the same since the last cat scan (which showed the herniation at L5-S1 and bone fragments within the broken left SI joint) or  if it means that what new stuff did show up is what the doctor had been expecting to see. I like it much better when the doctor actually goes over the written results with me so I can ask questions.

Then the mobility evaluation was brought up. The doctor started to say that he didn't want me to have a power chair and that's when Ron started speaking up. The doctor had been getting ready to leave the room when Ron spoke up, instead he sat back down, crossed his legs and actually *looked* at Ron. He told the doctor that I've been in bed for months, that my pain has been real high, that I fall frequently and that I can't walk from my bedroom to the kitchen without having to sit down in the kitchen doorway or possibly falling. I said that I had been telling the doctor all of this for months, all about the new symptoms and how I can't stand or walk for more than 3 to 5 minutes. I went through it again, describing exactly what happens when I stand for 5 minutes. At minute 2 or 3, I get the sharp stabbing pain at the top of both SI joints and my lower back starts to scream and the sciatica symptoms start. By minute 4 my legs are shaking, shooting pains are going through entire pelvis, down both legs, and up my back. If I continue to stand after that starts, at minute 5 my leg gives out (usually the left, but sometimes both) and I fall. I've tested this many times, timing it as well, and that is the progression. I told him that I have been telling him this for months, which I had. But since I haven't been able to read my medical record, I can't say for sure if he put it in there. I'm pretty sure Ron, the PA, did though because I heard him speak into his tape recorder after a visit with him. (This was a few months ago, before the office stopped using physician's assistants)

The doctor looked down at my chart and started flipping through the pages and he had a slightly sheepish look on his face. Ron then asked me to tell the doctor how many times I fall in a week, so I did (the answer is 2 to 3 on average). The doctor asked if the injection they did helped, and I told him no, which it didn't help and I wasn't expecting it to. They haven't helped ever since I did that fundraising stuff for Kyle's friend, and suffered that fall on Christmas Eve 2010, when I landed on the edge of the arm of that heavy solid wood chair that Ron's dad built. The corner hit the scar over my left SI joint and my right SI joint hit the edge of the desk as I went down.

The doctor checked my reflexes by tapping on my knees and my ankles. My left leg jumped just a little, which surprised me. But when he tapped my right knee, it became obvious that my left leg did not respond the way it should have. It moved just a little, whereas my right leg jerked very noticeably. The same reaction occurred with my ankles, though my left foot barely moved at all. My right foot strongly jerked in response. I could feel the difference too. He didn't say whether he noticed it or not, just but the little reflex thingy back on the counter (it wasn't a hammer, it was a circle on the end of a handle).

The doctor ordered that I undergo the mobility evaluation for the power chair. This is GOOD!

 He then decided it was time to get the prep work done for radio frequency in June or July (when my year is up). He says my record shows I had radio frequency this passed summer, but I don't remember having it. I remember getting injections, but not RF due to insurance issues. I had been told my insurance would only pay for 1 RF procedure per year, not the 4 that I need (2 in lower back, 2 in pelvis). The doctor explained that the insurance company will not pay for more than 1 RF procedure to the same area in one year, but they will pay for more than one procedure to different spots and as long as they don't repeat any of the spinal levels, I can get all 4 sections done. He then said he wanted to go ahead and set up the diagnostics and filled out the order sheet for those. So I am all set for the diagnostic part of radio frequency in April. This way we can just order the RF in June without having to do the diagnostics and making me wait any longer than I already have. This is GOOD!

I mentioned to the doctor that I had purchased some books that are designed to help people suffering with chronic pain to learn techniques to help them cope with it. Some of these things I already do, such as meditating, deep breathing, visualization, and pacing myself but I figured it can't hurt to read them and see if there was anything new I could try. I told him that the book had a paper that lets the patient keep a pain journal and I would start doing that. A pain journal is a daily record of my pain levels. I will fill it out 3 or 4 times a day, writing down pain level by number, what activities I did that increased the pain, and what treatment methods/coping mechanisms I used to help me deal with the pain. This will give him a record of how I experience my pain on a daily basis. He seemed very pleased by both of these things. These are GOOD!

Ron then mentioned this blog and the doctor wrote down the URL. I don't know if he'll actually read it or not. If he does, I hope he isn't expecting daily postings with multiple reports of pain numbers throughout the day etc., like a pain journal. This blog is more for me to get out my thoughts, feelings, and experiences as it pertains to my constant pain (I still think that is a better descriptor than chronic pain). Even though it doesn't give the same day by day accounting as a pain journal does, it can provide the doctor with a better idea of how my pain has been affecting me and how I've been stuck in bed for months and how I am coping with it. So this is GOOD also!


I was saddened by the fact that everything that was said yesterday has been said by me alone for the past 9 months, yet it wasn't taken seriously until Ron was there and said the same things.

I understand that doctors, specially pain management doctors, have to be very very careful now thanks to the DEA's war on doctors and chronic pain patients. I understand that they have to be watchful and careful so they don't give a prescription to someone who turns out to be an addict. I understand that they are working under the threat of not only going to jail and losing their license to practice medicine, but also under the additional threat of losing everything they own. I understand where the doctor is coming from, I really do. But I can't help but feeling upset that (it seems) I was not believed until my husband talked to the doctor.

I think it is very wrong that doctors now have to assume their patients are exhibiting drug seeking behavior when all they are doing is what they should be doing, describing their symptoms to their physician, especially if those symptoms have changed. I think it is wrong that a patient has to bring in a witness to be believed. I am sure that this must frustrate the doctors as well because it interferes with their ability to develop a respectful and trusting relationship with their patients. All these new regulations and rules interfere with the doctor's ability to help people, which is usually why a person becomes a doctor in the first place.

Don't get me wrong, I like my doctor a great deal. He is understanding and genuinely wants to help me control my pain. If I didn't like my doctor I wouldn't have remained a patient of his office for the past 9 years. It is just frustrating to see how pain management has changed over those 9 years, to what it has become, as a result of the war on doctors. I can only imagine how much this must upset my doctors as well as it upsets me.

The Cycle Of A Chronic Pain Patient

This is a great article on how chronic pain is treated through "pain management". In my state, as I've posted before, things have gotten even worse. Read this page carefully:

Painopoly written by Back Pain Guy at "Two Pain Patients" blog. This is copyrighted to them so to read it you have to click the link. It will open in a new window so you can then return here and see my comments about this article.

This is an attempt at making the gauntlet chronic pain patients must go through every month to get their medications a bit humorous, while also informing the reader of just how difficult it is for most to obtain their medications. This is the same gauntlet I have been running for the past 16 years, ever since my pain severely increased while I was pregnant with my son resulting in the broken SI joint I now live with. The gauntlet has gotten more difficult thanks to all the negative fear mongering hysteria based reporting about pain medication. I'm going to make some comments about this article.

The author gives 3 pieces of advice about not taking how we (CP patients) are treated personally. Try not to take the statements made my relatives, friends, and everyone else personally. Try not to take the fact that you are required to undergo mandatory urine drug testing personally. These are good bits of advice, but sometimes so very hard to follow. For me it is getting more difficult thanks to the laws passed in FL that have removed some trust from my relationship with my doctor (I will write more in another post, it is good but also very sad, annoying, etc.) Having family and friends make statements that they believe you are an addict, putting you in the position to once again having to explain the difference between psychological addiction and physical dependency is not fun at all. This continues to crop up whenever there is a media "Frenzy" about prescription pain killers. It is hurtful to hear loved ones say those words to you and it is hard not to take it personally.

The mandatory drug testing is also difficult to not take personally because of the unspoken (but heavily implied) accusation that you are doing something wrong. It does not matter how many years you have been with the same doctor, you still have to piss in a cup. It doesn't matter how many years you have never shown any signs of addiction, you still have to piss in the cup. It doesn't matter that every urine test you've had always shows you are doing nothing wrong, you still have to piss in a cup. Why? Because you just *MIGHT* do something wrong and the doctor has to cover his ass against the DEA. For me, my insurance company pays around $300 for each of these tests. So much for lowering health care costs. Because these tests are required, no matter what your personal history consists of, the necessary trust between Dr. and patient is eroded by this unspoken fear you will become an addict. Add in how easy it is to fail one of these tests (due to false positives as a result of certain foods, or other medicines, plus other reasons that are not related to the test results but still count as "failing" and thus dismissal from the practice) and it gives the patient an increase in anxiety levels and the subconscious thought that their Dr. thinks they're an addict or making stuff up. So yes, it is hard not to take this personally.

The small sub-paragraph that talks about the "Mini Game" touches upon how patients are treated by pharmacies, and how exact the prescriptions have to be in order to be filled. You can NOT fill 1 day early, it must be filled exactly (for me) 30 days from my last prescription. Which really sucks if your pharmacist can not tell the difference in days that occur when a month has 31 days in, rather than 30. As a result your refill date will be 1 number earlier than last month because that is 30 days. Some pharmacists will also talk very loudly, violating your HIPPA rights by making sure everyone in the pharmacy knows you are trying to fill a narcotic, this causes you to be given dirty looks or even verbally harassed by other customers as they assume  you are trying to fill an illegal script. This can also cause muggings if someone in the pharmacy is only there as a lookout for their partner (in the parking lot), trying to spot whoever picks up a controlled substance script. I am lucky to have found a pharmacy that doesn't treat me this way, but I have experienced this crap in the past.

Now comes the actual "game" of painopoly. Read carefully and you'll notice that the author gets dropped from treatment by a pain clinic because he had a 10 day script filled by his primary care doctor, while he was trying to find a new pain clinic to see him. When you are BETWEEN pain management doctors (meaning you are not actually a patient of one) it is NOT doctor shopping to get medication from your primary care doctor. hough in FL it is now not allowed at all, primary care docs can't write for pain meds anymore so if you're in between for whatever reason, your screwed. Doctor shopping is when you get scripts from more than one doctor, at the same time, covering the same time period. The fact that the author ends up losing the pain management doctor he finally got in to see, because he got a short term (10 day) temporary script to hold him over (and out of withdrawal, and was out of meds by the time he saw the new pain doctor) while waiting to see the new doctor, is very common.

There are so many things I want to say in response to this blog post by Two Pain Patients, so I think I'll write a series of essays in response to the many many valid points that are raised in this essay. Until then, I'll leave my comments where they currently stand. But please, click the link and read about painopoly, it is a very accurate representation of what chronic pain patients are forced to endure. This is how it has been ever since I went to my first pain management doctor, in Arizona when I lived there, back in 1999. Over the 13 years from '99 to 2012, it has only gotten harder to receive medications, not easier.

The government and law enforcement agencies are targeting the wrong people in their attempts to cut down on prescription drugs on the street. The majority can not be coming from a doctor's prescription since it is so difficult to get a prescription in the first place, and gets even harder every year.