Tag Archive | empathy

Staying Present During A Flare Up

It’s a major challenge to remain present despite the feelings of despair about all my worsening symptoms and lack of options that I am staring down. At the same time I’m always trying to figure out more and more about living inside my energy envelope and enduring the chronic pain, the lack of predictability, the severity and suddenness that my symptoms frequently come on.
Fortunately, a louder part of me than the despair knows that it’s important to grow and learn from this never-ending flareup, otherwise I am just surviving hour to hour, living in fear, and that isn’t enough for me. I’m greedy.
I want to get to a better place so I can really live again, within my limitations. So I can make my mark, however that is possible. It has to be possible. Everything is so hard now, but I know who I am, and I know who my friends are. I’m stronger than ever in some ways, and I am learning to forgive myself for the weaker parts.
Even when all I can do is breathe, it helps to remember that just being alive is amazing and improbable. I am so grateful for days when I am capable of seeing past the storms overhead. It’s okay that I can’t do that every day, because I’m doing my best.
from Instagram: http://ift.tt/1ENzmMI

Not Pretending

I hesitate to admit this, but it’s important. Before i got sick I was already pretending to be normal, pretending to be happy and productive and on some sort of trajectory, but I was just as lost as I am now. I have been dealing with severe anxiety disorders my entire life, ADHD, obsessive behaviors too numerous to list, occasional bouts of treatment resistant depression, insomnia, self-injury, severely restricted eating or binge eating depending on the year, as well as growing up with chronic pain to a much lesser degree than now in the form of frequent dislocations/subluxations, migraines, and dizziness/nausea, all of which went untreated for a long time, or treated but not correctly.

Now that I have a series of chronic illnesses/conditions, my mental health is under the microscope constantly. It has been enlightening but also terrifying. Not being able to hide my mental health or my physical health anymore is the part I’m still trying to accept. I’m used to being miserable to a degree and pushing through, always pushing through, and to have my body take that ability away from me has caused some serious grieving.

The thing I was most commended for other than my test scores was my ability to pretend like I wasn’t hurting while I was, both physically and mentally. All of the bits and pieces that make me my own person are also things that drew negative attention when I was younger, and I have trouble getting over that still.

My response to the negative attention, eventually, was to reinvent myself to be as normal as possible, as plain as possible, to not stand out too much, and to deny my artsy, nerdy, angsty side the freedom it wanted. Now I’m left with artsy, nerdy, angsty as things I need to learn to be proud of and to embrace again. I want to, I really do.

can you remember who you were before the world told you who you should be?

Those parts of me which long for the freedom to reinvent myself into the person I really am are winning. My hair is teal, my clothes are whatever the hell I feel like, I have been writing more honestly and openly, and I have picked up a paintbrush again.

So the path is there, I know what I need to do, but I’m scared to be myself again. For so long I’ve been this average-intelligence, straight, workaholic, brown-haired, plain-clothed girl who kept the ugliness and the oddness to herself, absolutely devoid of the desire to write the darkness inside of me or to paint it, only allowing thoughts out through a careful filter, and calling that happiness. It wasn’t. Neither was it sadness, exactly. I was just going in the wrong direction.

The reality is that my careful filter is broken now and only works in fits and starts… I can’t be anyone other than the person I have always been underneath the normal life I was trying to build around me like armor. I still love the interests I have cultivated while lost and wandering through life; I still love to garden, bake, and make my own home and beauty products. I absolutely still love my boyfriend, as well as this house and our cat. This is simply my soul wanting me to unleash it in any way possible in my new life, with my new limitations. I need to find a purpose, yes, but I also need to find myself again, be kind to myself instead of denying myself the freedom to be weird and potentially wonderful. So much anxiety must be tied up in the act of pretending not to be excited about the things that truly make me happy.

I don’t fully know what my happiness will look like now, but it will look different than the one I pretended was right for me.

To be honest, I’m relieved.

There are parts of me that are stronger than ever, and then obviously there are parts of me that are so weak that they have stolen life and time from me. But I am a survivor. This is me surviving. It might not be pretty, the struggle can get ugly and mean in an instant, but I have always survived, and I will continue to do my best. That will have to be enough.

I’m not any less okay than I was yesterday or the day before, I am simply not willing to pretend to be better or different than I feel. Some days I am still a suicidal teenager and some days I am a sage adult, and many days I bounce back and forth between the two. However, both are okay, both are me, and I am always going to be a survivor, even when I have no idea what else I am.

The term survivor implies that someone came through or currently resides in hell, however, and that is the part that people seem to forget. The struggle is what breaks you, but it is also what rebuilds you. We cannot be the same after we travel through nightmares turned reality.

Not the same, but certainly still me.

I am just too exhausted to draw a silver lining on my clouds today. Today it’s okay to acknowledge the storm overhead. To be soaked in it and shivering and afraid of the power behind it, but to remember that the sun also exists, just beyond those clouds.

You Don’t Always Have to Feel Grateful That it Isn’t Worse

So, I’m going to just say that things have been pretty bad for me right now. I have so damn many health care, financial, and emotional needs that are not being met, and after three and a half years of waiting my turn, I need something better than this, I need more, I need to live and have hope and at least try to get treatment for some of these problems. But just because I need something doesn’t mean it is possible. Money is an asshole that way. All ways, really.

I am still grieving the loss of a dear friend, and I talk to her at night when it’s quiet like this, and I think she hears me, but I don’t even know how to put into words how much it hurts to obliviously type her name on facebook like I’m going to see her there posting updates, and then to realize that no one gets to hear her sunny voice again. Who knows why it takes so long for the shock to wear off and the sadness that won’t lift to settle in. It’s like my bones are crying now, and I feel her absence physically.

All these things coupled with isolation and excessive pain levels with secondary depression, plus a nasty chest cold have made me a slightly more bitter girl, and I apologize for that, but then again, I kind of don’t want to apologize. Though it’s embarrassing to go off on an angry rant and publish it and re-read it the next day and not recognize who wrote the words, I did write it, and I did mean every word when I was writing and that tells me that someone else out there can maybe feel less alone if I continue to allow myself to occasionally write the lows, the times I don’t cope well, that my chronic illness brings.

The reason I’m suffering this week is simple. I went out, I lived a life for a week with two social calls an hour away from my house, and the consequence for my actions are a dire flare up and infections, even though I practiced preemptive rest, stayed hydrated, slept beforehand and loaded up on vitamins. That’s what the fuss is about, for any non-spoonies reading this. That’s why I’m “obsessed” with my illness and I never seem to win. You can do everything right and chronic illness is still a merciless, evil, cold hearted f*ck who will laugh at your plans, your support network, your therapy progress, your talents, and even your basic needs, and which will deny you access to them all from time to time.

I’m not trying to paint a grim picture, or a “poor me” kind of portrait, I’m trying to say that all spoonies, no matter how small you may see your contributions to be, all spoonies are important. You are important and you matter.                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                          atleastitisntworse

I guess I’m leaning towards the idea that if I don’t censor myself, I will probably help more people feel accepted and welcomed into the chronic illness community. We don’t have to have rainbows shooting out of our asses all the time to be valued and welcome members of the online spoonie community. I like encouraging people with stories about good days and things I am thankful for, and I won’t give that up, but I also don’t want to be missing a whole group of spoonies who feel pretty worthless and unaccepted by the rest of the chronic world.

Everyone needs a place to belong, even the undiagnosed, the doesn’t-quite-fit-the-diagnosis patients who are still in limbo, they need our support more than anyone. That is a stage in my journey where I was bitter every single day for at least a year.

So I’m going to perhaps post more vehement pieces than usual and not hold myself back. I will stop telling myself I can’t write on my worst days unless I have a good attitude while I do it,because that’s not therapeutic for me, for one thing. I do factor in here too, somewhere, I think.

The reality of being ill is that you will have some good days, some of us get more or less of those depending on our situation, some of us don’t have good days physically, but almost all spoonies eventually get to the point where you can have a series of bad days that you can handle emotionally, and those bad days will make you proud of yourself later on without too much soul searching involved. You endured and even conquered your illness for a while. You got through it without snapping and that’s to be commended. But it’s not to be expected from you. Positivity during hardship is not the only “right way” to cope. Because look what happens next; you overdo it or the weather changes or you cough funny, you have a medication reaction, or you develop a new symptom or allergy and things get complicated.

“Didn’t I just get through another hard week like this?” you think to yourself. It drags on, but you get through it, kind of numb and just making it day by day. And then not-so-wonderfully, another health setback; you have to take care of someone else who is ill, you get asked to another social function you can’t get out of, you have to attend three doctor’s appointments in one week, or whatever else it is, but it adds onto the pile you had not quite dug your way out of from last week yet. But you get through that week, and the next one too, though on the bad days you’re just counting the hours, you can’t even take it day by day things get so overwhelming. Months go by like this, a cycle of debilitation and not-quite-recovery only to be met with more medical problems, more stress, more debt, more isolation and eventually the bitterness that you thought maybe you had “gotten past” can sneak back up on you.

I’m not saying you are required by spoonie law or something ridiculous to feel all of these things in these specific ways for these reasons. I’m just setting the stage for those who are being hard on themselves for not coping as well as they’d like, and for people who may not understand what suffering from an invisible illness can be like when you aren’t improving.

No matter how you cope, or how well you “keep calm and carry on”, you still deserve to be commended. You’ve gone through a lot, and you should feel safe and understood when you are being honest about your pain. Honesty is not negativity.

Wishing everyone extra spoons, low pain days, and super soft fuzzy blankets that don’t hurt you while you’re sleeping. ❤

I Am Not Your Inspiration: The Problem With Inspiration Porn

Disability doesn’t make you exceptional, but questioning what you think you know about it does.” – Stella Young

The danger of being viewed through the lense of the “inspiring cripple” archetype is that it was created by ableists as a tool used to invalidate those who are struggling. It means that people expect things from you that you weren’t even capable of before disability, muchless after. It’s such an unhealthy way of approaching people who are ill, as if we are not trying hard enough unless we can plaster a fake smile on our face and say we’re doing well, when actually we are struggling in ways that only a small percentage of the population can understand. The notion of the inspiring cripple does not leave room for the uncensored reality of the chronic illness spectrum.

If you are able-bodied and do not experience mental illness, I am not your inspiration. If something I say or write is helpful to another spoonie, then that is why I am here and it makes me happy to be helpful whenever possible, but I don’t want ableist individuals thinking that my refusal to cry in a corner every day makes me somehow better at being sick than someone who can’t stop sobbing and wishing for death. I am not any better.

I am not “trying harder” than anyone else and I will not be used to shame someone who feels like they can’t handle their condition. I still feel like I can’t handle being chronically ill on a regular basis.

I am not your feel-good story. I am a deeply flawed human being with constant, unrelenting chronic pain and many other debilitating conditions and symptoms, too. My choices are give up and die, or keep trying to find a reason to wake up and to put food in my mouth once a day. Sometimes that is a genuine struggle. Sometimes I do not get out of bed, and I do not put food in my body, and that does not make me pathetic or weak, it makes me sick. I have good days and bad days and I have given myself permission to have both.

I am so very tired of inspiration porn, aimed at the general public and unapologetically using those who are physically disabled, suffer chronic pain, or live with mental illness and/or neurodivergence. Inspiration porn wants you to say “well, it could be worse, I could be that poor person in a wheelchair or that teenager with a cane, therefore I’m not allowed to feel shitty, ever.”

Bull. Shit.

I am happy to answer any and all genuine questions about my life, my coping strategy, my illnesses, or anything else that someone is interested in, provided that the person asking is not just going to use my answers against me later. I am not interested in answering questions that are actually just thinly-veiled judgemental commentary on how I deal with my pain and other symptoms. I wish that my abled friends could just acknowledge that my reality is not something you can comprehend if you don’t live every second of every day in pain, knowing that the pain is life-long or progressive.

If you are not sick in a long-term sense, please try to understand why you cannot compare my life-altering, completely debilitating daily pain to the last time you had the flu, or the time you broke your arm, or even the car accident you were in, unless one of those things resulted in a long-term illness, disability, or chronic pain disorder. Flus, broken bones, and car accidents may be unpleasant, but after some healing your life resumed as planned, so you have no idea what it is like to live in my body, the body that has caused me to slowly, against my will, forget all my dreams and plans for the future. Please realize that every pain is experienced differently and is unique to each individual who is suffering. Comparison of one disabled person to another person, disabled or not, is never okay. We are not brave for the things healthy people think we are brave for. We are not brave for simply existing, we are not brave for going about our day as normally as we possibly can. Attitude does not differentiate a “good” cripple from a “bad” cripple. Inspiration porn is pure victim blaming, and society has unfortunately picked up this nasty habit.

Ableist propaganda would have us think that if we are not using our illness to transform ourselves into an inspiration, we are just wasting space and burdening those around us. Do not buy into that trash! I am sorry for each and every person who has ever felt like their pain or illness is the punchline to an ableist joke. Those of us who are ill are allowed to make jokes, we are allowed to seek out the humor in our situation, and it is despicable that people would use that coping mechanism against us. Yes, I use sarcasm to cope. Yes, I use humor to cope. No, that does not mean I’m cured or experiencing less pain or “getting better at dealing with it” as so many have said to me. It means that if I don’t laugh about this, it will crush me.

My medical decisions are not up for discussion unless you are another spoonie, and even then, I retain the freedom to completely ignore any and all medical advice that doesn’t come from my doctors. I even retain the right to ignore medical advice from doctors that does not make sense or goes against my beliefs.

I certainly won’t be basing my medical decisions off of an abled friend’s (ex-friend’s) suggestion because they feel like they have “observed my pain” (read: been annoyed by how much I talk about it) for long enough that they are unreasonably comfortable making sweeping declarations about my use of medication, or with stating that I “pity myself” (read: retreat from overwhelming and triggering situations so I can take care of myself appropriately) sometimes. Fuck yeah, I do pity myself sometimes. I refuse to apologize for that.

The abled seem to possess an unlimited capacity to confuse my online and in-person honesty and unwillingness to sugar-coat reality with what they view as pity-seeking behavior and weakness. Saying I have an incurable illness is not pitying myself, it is the truth. I am allowed to speak the truth, my truth, and I am allowed to remark at the depressing reality of chronic pain. Ableism makes accepting the reality of our illness that much more difficult. If I said I never have moments of self-pity I would be lying, and that helps no one. I have every right to be upset about my conditions and to grieve over the losses in my life as a result. And so do other spoonies at any point in their journey.

It is just grotesque that there are people self-righteously using those of us struggling with mental illness, cancer, or chronic invisible illness (to name a few) as their motivation, or to shame others with similar struggles. I don’t want my accomplishments to ever be used to make someone feel inadequate.

The myths that are perpetuated by inspiration porn make it harder to be honest about what we as spoonies experience, which is why it’s time to start calling ableism out wherever and whenever we see it. Just because one person with MS can work a full time job does not mean that another MS patient is faking their inability to work. It’s such a simple thing, to validate someone, yet we don’t do it enough.

You wouldn’t worry about being polite when calling out racism or homophobia, so why would you worry about offending people when you call out their discriminatory attitudes towards chronic illness, disability, neurodivergence, mental illness, and chronic pain?

Chronic Lessons: Then and Now

When I first came down with an invisible illness shortly after being in a car struck by a semi-truck, things looked pretty bleak.

My thought process after six months of dealing with the constant doctor visits and physical therapy, with the pain, fatigue, and fevers, was that either me or my illness was gonna go. Both of us were not gonna share this body.

Fix it or kill me. That was my motto. I could not conceive of a world in which I could not work, but in which I still had value. Value despite a dollar amount I was bringing in. No part of me wanted to accept that I would have to learn to live with this, or that my life not only had to be paused, but also that I may never be able to participate in the same ways as before no matter what I tried to cure myself. We hadn’t even started talking about disease processes or autoimmune or anything at all other than injury from the car accident, but I was frustrated that I just kept getting worse the more work I did to heal.

On the days in between flare ups, before I knew what a flare up even was, I insisted to myself that I was cured, and I was horribly let down and unprepared for every single episode or new symptom that manifested.

When people told me it would be easier and better to approach my illness from a place of positivity, I was furious, because they were making the assumption that I wanted to live with pain in every part of my body, and I really did not, at least not at that point. I had just recently been perfectly healthy, my body and brain up to any challenge set in front of me. How could I adjust to being so drastically limited and in so much pain I couldn’t even drive or work a full shift? It truly seemed impossible.

It also felt like when people tried to encourage me to make peace with all the unknowns and all the debilitating symptoms they were implying that mind over matter would cure me, or at least allow me to live a ‘normal’ or fulfilling life. Again, a life without a job and my recently hard-won independence seemed so completely unfulfilling. I went straight into defensive language, outbursts, and isolation at the first suggestion that somehow I was expected to be strong enough to cope with physical weakness, fatigue, pain, sensitivities to sound, light, chemicals, smells, and touch, energy crashes, cognitive dysfunction, lack of ability to work or drive, and the accompanying guilt and grief that go with losing your place in life right after you gain autonomy over it for the first time. I could find so many more reasons to be upset than to be optimistic. It felt like everything I loved had been ripped away, like all my choices had been taken from me. Of course that isn’t true, but for newly diagnosed or undiagnosed pain patients, especially at a young age, it’s entirely common to feel like it is the end of your life and nothing good will ever be possible again unless it comes packaged as a complete and total cure. The temptation is to retreat and hope that you can pick back up again where you left off when you feel better, and that’s acceptable with temporary injuries and illnesses, but with chronic illness there are often no “feel better” days, and there is only so much hiding from life you can do before it becomes apparent that life is going to continue, albeit differently.

I still have moments where I think I can’t handle it, and weeks where everything spins around me and I hope hope hope I will still be okay when it all lands again. I still fear for my future, I fear for my relationships, and feel insecure about my lowered libido, frequent whining, fitness level, and inability to contribute financially. Those things are part of being human though, if I didn’t experience some guilt and upset over them, I wouldn’t be me.

Amazingly, I have learned a lot through illness. I have learned to be patient no matter how uncomfortable or unhappy I am. I have learned to take care of and prioritize myself even when it feels selfish and lazy. I have learned that internalized ableism is what makes me feel that way, and that ableism does not do me any good, especially not when it has become a part of my own thought process. I have learned the importance of asking for help, though I haven’t quite mastered actually asking for it. So much has sunk in; things that I was resistant to when fibromyalgia and chronic fatigue syndrome first reared their heads. I wonder if I am even the same person anymore, but not in a totally negative way.

I have learned above all that there is not as much wrong with me as there is with a society that teaches people to base worth off of income earned, sexual intensity, physical ability, and even intelligence. There is nothing wrong with having an excess of one or even all of those things. But there is nothing inherently better about possessing those things, either. Except that it certainly makes your way in life a lot easier to have money, health, sex appeal, and unlimited brainpower. Maybe that’s what I like more about myself now; it’s not that easy anymore, I can’t just draw on one of those things and call myself a better person for having it. I can’t reassure myself with meaningless attributes, and that is its own kind of blessing. I have to concern myself instead with things like courage, persistence, kindness, and even that elusive thing we call happiness. Amidst all the pain, being ill has given me something wonderful; it has allowed me to seek out those true, meaningful, beautiful traits in others, regardless of what value society has assigned to someone.

I’m actually surprised that the person I was ten years ago has grown up into a person who does not hate herself and who rarely wastes energy on disliking others. It’s a pleasant realization. I really believe I must have hated myself to treat my abled and active body with such disdain, and to have thought I was so boring when my life was always so full of unique friendships and passions, and to have constantly been comparing myself to others and feeling so shortchanged. Not to say I don’t have moments where my body is a source of insecurity, and I certainly get frustrated with the slow, meandering pace that my brain operates at now. Somehow though, over the years, the negativity has become tempered with “but tomorrow I will be grateful for what I do have”.

A lot of my current (relative) level of peace has to do with getting almost all the way off of Lyrica and starting to paint again (more about that soon!). A lot of it has to do with this blog and the wonderful people who have introduced themselves and the strong sense of community that lives here. Also through the groups I have been invited into because of my writing here. A lot has to do with therapy, some of it with self-therapy techniques, and some with the actual, lasting progress I have made along the way. It’s easy to look back at three and a half years of illness and feel overwhelmed with all the life I have not lived in that time. I had planned to have a career and a child by now, and perhaps to have bought my house.

Ten years ago, I would have only seen that big dark cloud of not measuring up materially to the person I had set out to become, and I never would have noticed all the glints of silver lining to be found from where I’m standing in the rain. Three years ago, I feared there was no happiness or peace to be found amongst the terror and the overwhelming nature of being sick in my early twenties. Two years ago, I knew that others lived with diseases and still had fulfilling lives, but the knowledge just made me angry. A year ago, the knowledge that others out there were dealing with similar things and did not want to die every single day started to give me hope, and this blog helped me find those people and learn the self-acceptance that I needed so badly.

Now, I want to start to figure out what I can do to give back, but I have taken a pretty big set back this week by conscious overexertion so I could spend time with my family and my mom while she was visiting Oregon for ten days. During my recovery from this, I will be writing more and pondering what I have to contribute, and where the chronic pain community would be best served by what I do have to offer.

Thank you for reading my blog, thank you for reaching out to me, thank you for being so understanding and gentle, and so patient. I couldn’t have done it without you.

Pain and Opiates: Perceptions vs Reality | EDS Info (Ehlers-Danlos Syndrome)

More reality checks when it comes to chronic pain and opiates, via a super smart fellow blogger! So happy to print this and put it in my medical binder for those idiots who think I should just suffer endlessly, needlessly, and be happy for the privilege.

It’s just so wonderful when people form an opinion based on facts and not histrionics.

Hooray for using our brains!

😀

Pain & Opiates: Perceptions vs Reality

via Pain & Opiates: Perceptions vs Reality | EDS Info (Ehlers-Danlos Syndrome).

1.    false: Opiates take pain away completely.

TRUE:  Opiates do not remove chronic pain, they do not numb pain like Novocain, they merely dull it enough so that it isn’t all-consuming.

2.    false: Pain is the body trying to tell you to stop, so you shouldn’t take opiates to cover up the pain signals.

TRUE:  Normal pain is an alarm to take action, but chronic pain happens when the alarm gets stuck in the “on” position – the switch itself is broken.

3.   false: Opiates make you dull, confused, and non-functional.

TRUE:  When used for pain relief, opiates allow people to be more active and functional, get out of the house and socialize, sometimes even continue working.

4.   false: There are other pain medications that work just as well as opiates.

TRUE:  Opiates are the most (and often the only) effective medications for pain.

5.   false: Opiates have severe and permanently damaging side effects.

TRUE:  Opiates have fewer and lesser side-effects than most of the other medications prescribed for pain.

6.   false: You will get addicted if taking opiates.

TRUE:  People taking opiates for pain are statistically unlikely to become addicted unless they already have addictive tendencies (5% chance).  However, regular use of many medications causes dependence after your body has adjusted to them.

7.   false: If you take opiates for too long, you’ll get hyperalgesia.

TRUE:  Opiate-induced hyperalgesia is extremely rare in humans, and this scare tactic is based on just a handful of very small research studies.

8.   false: If the pain is constant, you’ll get used to it and it won’t hurt as much.

TRUE:  Pain that is allowed to persist uncontrolled leads to changes in the nerves that can eventually become permanent.

9.   false: Opiates work the same way for everyone.

TRUE:  Different people get the same amount of pain relief from widely varying dosages because our bodies are all different in the way we “digest” opiates.

10.   false: It’s better not to take opiates because they damage the nervous system and cause hormonal imbalances.

TRUE:  Persistent pain results in the same kind of damages to the nervous and hormonal systems.

11.   false: You should not take opiates because your pain won’t improve.

TRUE:  Chronic pain can only be treated, not cured.  Opiates are often the best means available to treat the devastating pain symptoms until a cure is found.

12.   false: If you start taking opiates, you’ll just have to take more and more forever.

TRUE:  Most chronic pain patients finds a stable dose of opiates that works for them.  If doses need to be increased, it is usually because the pain condition gets worse over time.

13.   false:  People only want opiates for the high.

TRUE:  When taken as prescribed for chronic pain, opiates do not make you “high”.  The same chemicals that make illegal users “high” go toward dulling the pain instead.

14.   false: It’s better to tough it out.

TRUE:  Denying people pain relief sentences them to a life of unnecessary suffering.

= = = = = = = = = = = =

“The patient uses opioids to relieve pain and maintain a normal relationship with the real world;  the addict takes opioids to escape from reality.” – Ronald Melzack

= = = = = = = = = = = =

Many people disabled by chronic pain are unfairly accused of lying and faking, so here’s some myths from that category too:

1.  false:  People who complain about chronic pain are just trying to get SSDI.

TRUE:  Most people disabled by pain desperately want to work.  Many had to give up high-level, well-paying positions and now live in poverty on SSDI.  There may some fakers, but this is not a reason to deny SSDI for truly disabling pain.

2. misleading: If injured workers are given opiates they are unlikely to return to work (statistically true)

TRUE:  This is probably because their injuries are serious enough to cause chronic pain and require opiates, not because the opiates are keeping them away from work.

= = = = = = = = = = = =

1. Source for addiction statistic:

http://www.nlm.nih.gov/medlineplus/magazine/issues/spring11/articles/spring 11pg9.html

via Pain & Opiates: Perceptions vs Reality | EDS Info (Ehlers-Danlos Syndrome).

An Old Rant and a New Perspective

I found this article which I had written about on Facebook before I had a blog. The first time I read about this girl’s story I felt so alone, so overwhelmed and out of control and consumed by pain that I cried the entire time I was reading it. I didn’t yet realize how many of us were going through the same thing, or how many friends who truly get what chronic pain means that I would meet along the way. I just knew the desperation, anger, and denial that I was piled under. Fortunately, times have changed, or at least my perspective has. I can still really sympathize with this girl, and understand where she is coming from, and I am still incredibly grateful to her for writing her story at a time when I felt hopelessly isolated. This may have been the first time that I realized if more people were less afraid to speak out about chronic pain, we might be treated like human beings, eventually.

 

My Story: Looking for a New Doctor

National Pain Report

May 26th, 2014 by Kitty Taylor

I’ve had chronic pain as far back as I can remember. It got unbearable a few years ago after a serious injury. My body won’t forget the pain and it feels fresh as day one without medication.

I recently moved to Colorado from Nevada after being with the same doctor for many years. Now I’m having a hard time finding a new doctor willing to prescribe the medication I’ve been taking. I’ve found plenty of clinics that say they specialize in pain management, when in reality they are rehab clinics. Their sole purpose is to wean you off narcotics and put you on highly addicting medication, such as Suboxone or methadone. Some clinics are treating pain with Suboxone long term. That was not the intended use.

Then there are pain clinics, usually the spine centers, that only do injections and don’t prescribe drugs. I wish they would distinguish in their business category what they’re really about.

The first clinic I thought would be helpful turned out to be a Suboxone clinic. On my second appointment there they told me outright that I wouldn’t be continuing on the same medication and that I would be going on Suboxone. If I didn’t agree that, I was told they’d cut my doses so low I couldn’t handle it anymore. So I canceled my next appointment with them.

Drugs like methadone and Suboxone (which may or may not help the pain) are just as dangerous and the addictions to them are intense. The withdrawals are unreal. Coming off the medication I’m on now would be painful, but having to come off one of those could cause months, not just days, of withdrawal and pain.

Not only that, but imagine if you couldn’t get your next dose of methadone or Suboxone, you could end up in a coma! Any doctor that says there aren’t side effects and the withdrawals aren’t bad is lying.

It’s been four months since my last appointment with my helpful doctor and I’m still looking for a new one. One clinic I had a referral to, the doctor refused to accept me as a patient. It’s taking so long to find a doctor and I’ve got to find one quick! There are so few listed and so few that prescribe narcotics or are honest about what they practice. If you are rehab clinic you should not be advertising that you manage pain.

I’ve certainly been made to feel like a drug seeker and nothing more since I’ve moved. My last doctor never made me feel that way. He was caring and compassionate from day one. The only complaint I have about the visits there was that the DEA had them scared to prescribe medications that I had been on for a long time. My medicine and schedules were altered based on word from the DEA, not what my doctor felt was right for me and not what was working for me.

My daily function is greatly decreased since my medications were screwed with and it’s getting worse. First they took away Soma and it was painful trying to find another muscle relaxer. Even the one I’m on now sucks, but it’s better than nothing. Some of them I think were causing more muscle spasms and cramps. It was so bad I looked like I was having a seizure.

Then they couldn’t prescribe more than four oxycodone pills a day when I was on six. They couldn’t even prescribe Demerol anymore because the DEA and the county were having so many problems with it. The hospitals stopped keeping it and the pharmacies stopped ordering it because of theft and robberies!

Kitty Taylor

Kitty Taylor

via My Story: Looking for a New Doctor – National Pain Report.

One of the first things to go was how many different narcotics I was prescribed at once. My doctor had me on two long acting (1 pill, 1 patch), two short acting (1 scheduled and 1 breakthrough). So for short acting, I would have 4 Dilaudid a day scheduled and then up to 6 Norco per day as needed.

The Norco was taken away and so was the patch. I was down to oral long acting 4 times a day instead of 2, and 6 short acting a day instead of 4. It worked out about the same, except those extra Norco would be a godsend about now, especially since I’m running out of as needed meds because I’ve been without an appointment for so long.

This shouldn’t be happening. I’m looking for cash only clinics now even though I have insurance because I don’t want my business in all the computers everywhere. I’d also be fine seeing a pill pushing doctor that over prescribes. I’d be able to stock up in case something like this happens again and I trust myself not to increase my medication.

I never take more than I need and I’ve never run out before my next appointment. Because of being hospitalized I’ve been able to stock up on some of my own stash while the hospital administered to me with their own pharmacy.

There’s no point in making myself more tolerant and never getting what I need. That’s why I switch my meds to equivalent doses of different kinds every few months. That way I don’t need to increase. My body becomes tolerant to one and I switch to another until I become tolerant again and I switch back. This regimen worked well for me and my doctor agreed it was better than taking more and more.

I don’t want to be labeled or discriminated against for having invisible disabilities.

I get enough smacks in the face just using my disabled parking privileges!

12_7.jpg“Kitty Taylor” is a pseudonym. The author, who suffers from Ehlers–Danlos Syndrome (EDS), Cushing’s Disease and Post-Traumatic Stress Disorder (PTSD), asked that her real name not be used.

National Pain Report invites other readers to share their stories with us.

Send them to editor@nationalpainreport.com

via My Story: Looking for a New Doctor – National Pain Report.

 

And this was my response, a year ago:

“This is so much like my story. The way she talks about having to deal with “pain clinics” who only push methadone, or who only push Lyrica and Savella, or who only do injections. None of them have the ability to actually treat acute flare ups. I know from personal experience that even when a procedure at a pain clinic goes wrong and they have caused you intense and unrelenting pain, they do not offer any help, just tell you to calm down, because you’re scaring other patients, and “if it’s really that bad” to go to the emergency room. Pain clinics are a gimmick. A glimmer of hope that turns out to be bullshit when you get up close, every time.

I can’t do cortisone injections, I can’t take most antidepressants, nor steroids, nor do I care to, I am taking Lyrica and two different muscle relaxers at the same time for spasms and I also take all the usual Vitamin D, B-12, magnesium, zinc, rosehips, tart cherry extract, etc, that seem to help maybe? Who knows. The only time I have ever gotten any relief from this pain is after six hours waiting in agony at an Emergency Room, watching junkies and fakers get treated with more dignity than you, because you refused the little cup full of oxycodone and valium (I had already taken my personal comfortable limit of oxy while waiting in the ER, and I told them so, and I don’t do well with valium, it causes panic attacks and it’s written so in my charts if they had payed attention). One time I was told rudely to leave the ER, and then billed $600+ for the pleasure of being treated like human garbage by a very bitchy ER doctor after waiting many hours to be seen. Twice I received actual pain relief that lasted maybe five hours and was the only relief from the hell of fibro that I have had in two years. I haven’t been to the ER in over a year, but I think about how the ER is always full of people who feel better than me. The ER is a very, very, VERY last resort at this point, however.

I’m not even functioning anymore, I’ve been in way too much pain for way too long. I’m just trying to get to a place where I have enough moments in a day to take care of myself properly. I’m not even close to that level on my current treatments. Most days I can’t brush my hair or take a shower. Most days I spend two hours doing a task that should take fifteen minutes. Most days I am overwhelmed and unable to advocate for myself.

The point she makes that I think cannot be overstated is that chronic pain patients don’t abuse medications. Then we wouldn’t have them when we need them. The pain is real and we would never want to not have the ability to treat it.

We are just as scared of finally finding the right drug (can it please be a non-opiate, non-psychoactive drug?) that makes the pain bearable only to have it taken away again, as we are terrified of the pain we are in continuing unchecked. And we are scared of addiction, too. And scared for our organs. And scared for the changes in us caused by taking pain medication. We’ve weighed all that. The pain warrants the medication, or we wouldn’t take it.

The pain is already changing us, rewiring our brains, making us shells of the people we were before, and turning our bodies against us. If there were something better, we would certainly take that instead.

I understand her panic and her logic and I really feel for her.”


 

Phew, so that’s me a year ago. I don’t regret writing any of that, because at that time it was all true from where I was standing. It’s important to note that I was extremely depressed, and had been disappointed and disillusioned so many times. I had a primary care doctor who believed I was faking, no way of seeking relief except the ER, and I very much didn’t understand what was happening to me. At the time, open therapy was doing very little for me. I spent more time staring at my psychologist in total confusion than I did processing or talking things through. She would ask me questions like “what kinds of self-care routines are you doing on a regular basis?” and I would look at her like she had grown a second head, and she would push, “you must be able to think of one self-care activity, I don’t care how small it is.” I was still confused. Self-care? As in, my needs had to take precedent over others before I was at the point of throwing massive temper tantrums, crying uncontrollably in public and at work, and having ten panic attacks in one day? How was I supposed to even start? What did it all mean? Was this lady crazy? I was supposed to get better, not spend more time wallowing in “my needs”.

That’s my thinking a year ago. The level of brain fog I was enveloped in at that time is pretty evident, and there isn’t a lot of built in logic to my ranting, but I wasn’t even aware yet that my cognitive abilities had been taking a nosedive over the past two years. I knew I had Fibromyalgia, but I didn’t know much about it or much about what my life would look like in a year. To be honest, when I typed my response to that writer on National Pain Report, I didn’t even know if I’d be here in a year. Two girls with Ehler-Danlos Syndrome responded to my posted response on Facebook; one is a dear friend now but was someone I had just met at the time, and another I was too self-involved to reach out to in return. Currently, I am haunted that I didn’t reach back, more than I am bothered by anything that I did write. Reading through this outpouring of my own overly raw emotions made me wince, but seeing how I ignored another spoonie’s attempt to connect gave me actual regret. Both girls have EDS and encouraged me to push forward to a diagnosis.

I still don’t have the diagnosis, but I am treating my joints with much more care and attention and I am seeking physical strength instead of allowing fear of injury to mandate every activity.  I also do finally understand what self-care is and have a long, long list of ways to recognize and put disordered thinking in perspective, but I am still learning more every single day. I would no longer characterize my life as hellish. Some days are indeed horrible, but I have good days too, and I am more prone to seize them now than a year ago.

I feel gratitude and empowerment when I take care of myself these days, not selfish guilt, but it took reframing my thoughts, repeatedly. Of course I still forget to make myself a top priority sometimes. There are always improvements to be made, but I am confident (another new development) that I will continue to make necessary changes and seek out information that helps me cope. In the mean time I am trying to find joy in small wonders. Any little victory is cause for celebration. Today, I’m happy that I have made progress since my diagnosis. Visible, written down, real progress. All the hard work has been overwhelming at times, it has even felt like I have slid backwards more than I have been able to put one foot in front of the other and keep climbing, but in one short year, the small changes I have made have taken me a long way from not knowing if I wanted to be here in a year, to planning for the next five, ten, twenty years of my life. I am even starting a business with a close friend, something I thought was ripped out of my grasp by illness which has actually become much more possible because of the life adjustments I have made to accommodate the chronic pain that dogs my every move.

It just proves that accepting and processing what illness means for me personally, minus the guilty nagging voice in the back of my head, has made all the difference. I think others around me may be frustrated by how little I can seem to accomplish in a certain amount of time, but I now realize that this isn’t their journey. It’s my journey, at my pace, and that’s healthier than continuing to constantly feel like a failure for struggling to keep up with everyone around me. I don’t have a magic finish line that I can get to and be “recovered”. The best I can do is the best I can do, end of story. I will work with what I’ve been given, and I will be grateful for what I can do on any given day. Sometimes that means just breathing in and out for hours, nothing else, and sometimes it means charging at life like I don’t know what pain and illness even are.

 

Geography Cannot Stop Spoonies From Finding Each Other

Moongazer commented recently that it doesn’t matter where we are geographically, we spoonies can still find and comfort each other no matter where in the world we are, and I couldn’t agree with her more.

In fact, getting to network with people who live with and work around other health systems is beneficial to all of us. We all need to know what specific problems our spoonie friends in other countries have to face. None of us should have to fight the system alone. Ever. Together we can solve complex problems within our healthcare systems, but it takes a lot of networking and a willingness to learn what others are up against, especially in countries where it is very hard to have an invisible illness. I know it’s hard everywhere, but I also realize that I am extremely lucky to live in the US, even if it means I have to wait five years for disability to be approved, and my healthcare kinda sucks, and my pills are extremely expensive and the treatments that will most benefit me are either non-FDA approved (read: EXPENSIVE and hard to find and makes you look suspicious on your medical record), or they are off limits because of this crazed witch hunt involving chronic pain patients and opiate use. A topic for many more blog posts, for sure, but not the topic of this post.

Bottom line, others have it harder than I do by far. I don’t just mean that others are in more pain or have more broken bodies than mine, although that is also very true. I do mean that many fellow spoonies have no roof over their head, no access to the internet, no support networks, no disability to even try filing for, no access to any treatment or meds, and often no access to diagnostics either. The minor annoyances in my life, like not being taken seriously, is a major roadblock for someone who still needs a diagnosis, still needs at least one doctor to take them seriously and at least try to help them. What about places where new chronic pain research has not been circulated? So much of our knowledge of where the pain comes from and how real it is have changed, but without the benefit of that knowledge, many suffer inhumane hospitalizations for psychiatric disorders they do not have.

Moongazer’s sweet comment also reminded me of how my psychiatrist asked me if I knew where my blogging family lived and I looked at her like she was the crazy one, but the question also caught me off guard; I felt suddenly so defensive of all of you. We are not some mass hysteria, thinking everything is a conspiracy and no one in real life understands us. Instead it is more like huddling together for warmth with people I am actually proud to call my family, only on the internet. It is a chance to read about others who handle pain differently, to get to know them through their clever words and their important stories. It is a chance to comfort those who are newer to the chronic pain community, and reach out to people who I have admired as writers for years. Who could pass that up? Not I!

Why does it even matter? I have friends that live right down the block that I talk to way less than you guys! I also talk to my family less than I talk to fellow spoonies. I don’t mean for that to sound sad or complainer-y, but just that it is so amazing to have contact with a vast array of talented, witty, and inspirational individuals who do not force me to justify myself and who accept me as I hope to learn to accept myself.

I was very lonely, I won’t debate that, but I didn’t come here specifically to meet new friends. In fact, I thought I would be the worst whiner, off in the corner, unable to meet anyone because I was too bitter and angry. Being around people who understand has washed away the empty, bitter angriness, and replaced it with joy and determination. That is what my blogging family means to me, and so much more. I am beyond grateful for your support, patience, and kindness as I work through things that many of you have figured out long ago. It is such an honor to be allowed to learn from and reach out to others who live with chronic illness or chronic pain, and to see firsthand how strong we truly are together. ❤ ❤ ❤

Though I have to admit, now that I’ve been asked, I am curious as to how far apart we are spread. I would love to know what state or country everyone is from! I’m a proud resident of Oregon. The Pacific Northwest is beautiful and won’t let me leave for too long, though I’ve lived in Massachusetts and Indiana as well. I was born here and I love this state!

Drop me a quick comment and let me know where you live, I can’t wait to see where we all are from.

Pain, pain. Go away.

I can’t believe it, I wanted quiet to soothe my pounding head and I actually got it…. for the next half an hour, my house is still and pensive, just waiting for our downstairs neighbors and their three year old and my boyfriend and his best friend to all fill the walls and ceilings with voices and laughter again.
Right now all I can think is that I need to find a way to climb out of this flare up. I am not living, stuck at a 7 on average on the pain scale for almost 10 months, a screaming 8 today, and that’s with all the medication I am allowed to take at one time and all the meditation, biofeedback, and visualization that could possibly be squeezed into my day. Doesn’t my agony warrant some kind of pain relief, or am I not deserving of that for some reason? This week has felt like I am being tortured, I cannot think to save my life. Even the weight of the hood that protects my neck from the cold wind is compressing my neck and causing fiery misery. I am mixing up words, my face is slumping on the right side, non-stop colored lights and floaters in my vision, my pain is bouncing around from minute to minute, from an 8 through a 10 and back down to a 7 again, but we will call it an 8 because I don’t like to admit it’s any worse than that. Totally random things, a thumb, then a shoulder, a kidney, then an eyebrow, a hip, an armpit, a shin, then my thigh, abdomen, toe, face, then my other shoulder. It’s just madness. The pain is making me feel crazy, like I need to rip the offending body part off of me, or like it is being ripped off. The headache is getting worse day by day, and at this point ignoring it is no longer an option. Not to mention I threw my low back out (thankfully not the most painful of all the times this has happened, but out enough that I can’t bend over and have to shuffle around with my knees pressed together). My neck/skull on the right side are in the 9-but-I’ve-learned-how-to-make-it-seem-like-an-8-because-it-never-goes-away range. It’s really that flu-like ache that is so all-encompassing, just like when a healthy person has an actual virus, that it’s impossible for me to go about a regular day no matter how willing I am to push through the pain aspect of my illness.

I want so much to be able to use my Saturdays for something fun. I feel so bad for my boyfriend who has been every bit as profoundly impacted by these conditions I am dealing with, and I feel particularly bad today that he had to run all the errands himself. I am not the same kind of girlfriend that I was to him before the car accident. Then again, I also feel bad for myself, never getting to go thrift store shopping, see my friends, take walks, practice yoga or make everything from scratch with love, and on top of that feeling like a burden. I miss being the old me. The competent, smart, working, thriving me that was stolen away when I started to get really sick and the chronic pain became constant chronic pain from which I could seemingly find no relief.
Don’t take your health for-granted. If you can walk up and down the stairs and you can do it without fear of terrible pain, you should celebrate that fact right now! If you can cook dinner or pursue your hobby or your career, hug those abilities close and thank your body for making it possible. If you work out, even once a month, and get sore afterwards, soreness is so pleasant compared to how I feel even on a really good day!!! Rejoice in feeling sore and that you can work out, because both mean that you are in much better health than I am.

Happiness is a state of being, but that doesn’t mean that having good health doesn’t help, and that it isn’t incredibly difficult (ah, but not impossible, and that’s what this blog is really about) to be happy when your body feels like it’s being tortured.  I usually try to end all my posts on a more cohesive, happier note, but sometimes that’s just not a part of today’s story. Sometimes I am angry at the pain, and sad for what is lost, and there is momentarily no solace except that this too will pass. Tomorrow is always a new, hopefully better day.

Thank you to all the sweet and lovely people who read my rants, who respond when it is hard, and who reach out when they are under a mountain of health concerns of their own. I am so very grateful to the beautiful souls who have graced my life throughout sickness and health. Again, I’m not sharing the  way my pain gets to me so that others feel sorry for me, I know my pain is not as bad as it could be and I know I don’t manage it perfectly by any means. I am sharing this because maybe someone whose sister, husband, daughter, wife, mother, uncle, etc has told them they are ill or in constant pain, and who nodded but had no idea what that meant, maybe they will read what it is like to be traveling in the land of chronic illness. Maybe this information can be used for education, to bridge the gap between the land of the healthy and the land of the sick so we don’t have to travel alone so often.

Hilarious Retorts For Doctors Who Think Fibromyalgia is a Joke, From an Actual MD

As a companion piece to my post about dealing with doctors in the context of a chronic illness, and because I so enjoyed A Body of Hope‘s humorous but realistic take on her experiences with doctors in Warm Milk: Physician Frustration, it seemed like some similar lighter fare was appropriate.

Here is a hilarious rant by Kevin White, MD, with the perfect rebuttal to the many doctors who think that fibro patients are faking it. It’s nice to see someone in a position to make changes so animated about advocacy for the chronically ill. It’s also nice to hear that my occasional feeling of homicidal rage are justified. 😀

Especially, it is awesome that there are doctors out there willing to defend us so bluntly and honestly. Thank you, sir!

The more I look, the more I find doctors giving us good advice. Wish I could find more in real life, but it’s certainly nice to know they’re out there!

A Letter To Patients With Chronic Disease from An Experienced MD

#HonestCommunication

About three months ago, I stumbled across a really interesting essay written by Rob Lamberts, MD on his blog at Musings of a Distractible Mind. The essay discusses in-depth and honestly how chronically ill patients remind doctors of their own humanity, fallibility and failure. This is something I have understood for a while but not been able to put into words.

Now that I have finally found a primary care provider who respects me and who I respect in return, I am a lot more hopeful about my future. All as a result of my ability to put trust in her. I do not, however, expect her to fix me or even necessarily tell me what is wrong with me. I do believe she is doing her best to figure it out, and she seems to believe my pain. Ahhhhh, miracle of miracles, I found a healthcare professional who actually cares! Novel, exciting, and entirely needed. 🙂

It seems the missing part of my previous relationships with doctors (not all of them, some of them are just plain jerks): I needed to show them the compassion I wanted to receive in return. This is just an excerpt from the wonderful words of Rob Lambert in A Letter To Patients With Chronic Disease:

(http://more-distractible.org/musings/2010/07/14/a-letter-to-patients-with-chronic-disease)

…We are normal, fallible people who happen to doctor for a job.  We are not special.  In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help.  We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.

But chronic unsolvable disease stands square in our way.  You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you.  We don’t want to face things we can’t fix because it shows our limits.  We want the miraculous, and you deny us that chance.

And since this is the perspective you have when you see doctors, your view of them is quite different.  You see us getting frustrated.  You see us when we feel like giving up.  When we take care of you, we have to leave behind the illusion of control, of power over disease.  We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress.  You are the rock that proves how easily the ship can be sunk.  So your view of doctors is quite different.

Then there is the fact that you also possess something that is usually our domain: knowledge.  You know more about your disease than many of us do – most of us do.  Your MS, rheumatoid arthritis, end-stage kidney disease, Cushing’s disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder – your defining pain –  is something most of us don’t regularly encounter.  It’s something most of us try to avoid.  So you possess deep understanding of something that many doctors don’t possess.  Even doctors who specialize in your disorder don’t share the kind of knowledge you can only get through living with a disease.  It’s like a parent’s knowledge of their child versus that of a pediatrician.  They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.

-Rob Lamberts, MD

Written July 14th, 2010

(Read the essay in it’s entirety at http://more-distractible.org/musings/2010/07/14/a-letter-to-patients-with-chronic-disease.)

So there you have it; part of the reason why you scare your doctor/nurse practitioner, the reason why you make them uneasy, agitated, and defensive. The author of this letter isn’t blaming his patients for making him feel like a failure, but he does go on to give us some tips for creatively gaining some ground with our doctors and reducing the tension in the exam room so everyone can behave like adults and no harsh “I don’t know what to do, your situation is just too complicated” gets thrown out there. Phrases like that effectively shut down communication and trust between you and your doctor. It’s as if they just slammed a door in your face. Of course, when we collapse into hysteria and start screaming for someone to fix us (um…. yeah, that might have happened, maybe…), that sort of thing can also shut down communication pretty quickly, just for example.

The step by step tips the author gives for cultivating a good relationship with healthcare team members should help to get things off on the right foot with a new doctor, or even mend a relationship with one of your current doctors. The latest poll of MD’s from 2013 Pain Report found that 1/4 of primary care doctors believe that all their fibromyalgia patients are exaggerating or even faking illness altogether (yikes!), so there is always that chance that you could be stuck with one of those jerks. In which case, don’t mend anything, just BAIL. Get out!!! Find someone else. Search the chronic illness support groups in your area for suggestions of primary care options who take your health insurance. (Hint, those support group websites often have lists of local lawyers for helping you file for disability and even local charities that can help with food, electrical, and mortgage/rent costs.) Then, once you’ve found a new doctor, use the author’s suggestions to build a rapport with him or her..

I know how frustrating the search can be, but I can promise you there is a huge, staggering, massive difference between a doctor who is a bad fit and the right doctor. Even with the right doctor, part of being chronically ill is understanding that no one understands us. We are always, to some extent, alone in our illness. Each of our pain is unique, it is not like anyone else’s pain. No two match up exactly. Therefore, no doctor will have the same take on it as the next. This is one reason why the author advises that chronic pain patients keep their eggs in just a few baskets; only seeing the same few doctors who are all in connection with each other and can actively manage your illness instead of bouncing from specialist to specialist to specialist.

Part of the shift towards receiving better care requires that we as patients always remember that the person we’re dealing with, underneath the title that shows us they attended a lot of school, is a human being who is capable of making mistakes and feeling guilty, defensive, or embarrassed by those mistakes. It is not our job to puff up our doctor’s ego by saying they did a good job treating us if they did not, However, it is also not our job to tear them apart when they are trying to do their best, even when we are just desperate for them to pay attention to our agony. Trust me, I get that, I have been there for more than a year straight not that long ago; just a total mess in every doctor office I went to, and every visit was a bad one that year. I left in furious tears far more often than I left composed.

Instead of going in dreading and fully expecting a fight, now I strive to help my doctors, nurses, and specialists more easily understand me by following some basic etiquette and planning for my time with providers more carefully. Thanks to the author of this article I am lucky to have found a great doctor-patient relationship with my new primary care who is a joy to see. She holds my hand when she has bad news, she is warm, compassionate, smart, and determined. I finally have an ally in my primary care! Finding such a gem of a nurse practitioner does not end my struggles with chronic illness, but it is a huge relief. Now when I encounter a doctor I cannot see eye to eye with, despite practicing compassion towards them, I am much more confident in identifying who will work with me and who is too jaded or disrespectful to be a good fit. I’m still learning how to implement all the advice the author laid forth so clearly, but after years of bad doctors and me being a bad patient in response, I think the cycle is broken.

A Letter to Patients with Chronic Disease is one of those essays I would recommend to all patients with chronic conditions, and it is one I wish I had read earlier in the onset of my illness. It found me at the right time, though, and I am so grateful.

In case you need to copy and paste the address of the original letter, here’s the url: http://more-distractible.org/musings/2010/07/14/a-letter-to-patients-with-chronic-disease

my dear friend, A Body of Hope, wrote a companion piece explaining with a touch of humor just how frustrating it is to depend on doctors, and a clip from Twin Peaks (eep!) making it all clear as day.

Here is the her post: Warm Milk: Physician Frustration. Head on over and check out all of her insightful and inspiring posts. Her sense of humor is flawless, and I am always and forever in debt to her for helping me get started here.

Chronic Pain Visualized #1

Chronic pain isn’t easy to express, not in words or pictures. I have struggled to express how chronic pain actually feels through art. My paintings are abstract multimedia pieces, and for the most part they’re just so I have something bright to look at around my house. They leave the onlooker with no idea that I suffer with every brush stroke, every adhered scrap, every swipe of the palette knife. These five artists, however, have managed to express so many of the things I feel every day, but have no idea how to show people a visual representation of.

Since I’ve been feeling particularly lousy and in way more pain than is even normal for me, I’m gonna go ahead and let this count as a blog post? I want to do a whole series on art relating to chronic illness, but we will see. I’m so disorganized!

1. Of course, let’s start it off with Frida, who had a pain syndrome that many have speculated was fibromyalgia, as well as severe and debilitating chronic back pain which she has portrayed so clearly here. I have always loved this self-portrait, entitled “The Broken Column” even long before I developed clear symptoms of fibro:

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#SpineDamage #NerveDamage #FracturedVertebrae #DegenerativeDiscDisorder #HerniatedDisc

2. The damage done to my low back from getting hit by a semi truck. Now I feel like this when my back goes out, which is kind of a lot because of the addition of Spina Bifida Occulta and Joint Hypermobility Syndrome:

Pain1

#HerniatedDisc #DegenerativeDiscDisease #Scoliosis #Lordosis #Osteoarthritis #EhlerDanlosSyndrome #JointHypermobilitySyndrome #SpinaBifidaOcculta

3. Nerve pain, just imagine those lines about an inch underneath your skin, until it’s basically in your bones:

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#Neuropathy #NervePain #NerveDamage

4. This one reminds me so clearly of the one sided occipital migraines and trigeminal neuralgia which I am constantly dealing with:

pain4

#OccipitalNeuralgia #TrigeminalNeuralgia #OccipitalMigraines #TMJ

5. Sad but true. This is what yoga feels like now. I am always telling my boyfriend that it feels like my spine is trying to rip clean free of the rest of my body, just like this:

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I’m not posting these for pity or for shock value, sometimes it helps me to have a visualization of my pain ,because it helps me to picture it disappearing while I meditate. Other times I just want to know I’m not alone. I’m sure I’m not the only one who feels a little bit validated when they see their chronic pain taken seriously. These artists take pain seriously, but they also managed to turn their pain into something creative. Using pain as inspiration for making beautiful things or things that others will relate to is a huge goal of mine as a formerly creative person. Illness can’t have my creativity, and these honest portrayals of the agony of chronic pain help me remember that art and the freedom it gives us is such an integral part of healing. Time to start painting again!

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chiaricontinues

chiariwife. chronic pain. awarness.

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