Tag Archive | Spina Bifida Occulta

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

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. ❤

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.

New Site Header

I tried to make a new header and improve my blog’s layout a tiny bit, but I just can’t decide which header image I like the best, out of all the ones I have made. I guess I haven’t knocked my own socks off yet with any of them, so until then this blue beach scene will have to do. Reminds me of the coast in oregon on an especially pretty day, mixed with the hand-painted watercolor cards my grandma used to send on birthdays.

Check it out, tell me what  you think:

findingoutfibrolivewellheader

You can see I did decide to change the wording of my tagline from “survive with chronic pain” to “live well with chronic pain” as I think that’s a better goal for me now, more than a year out from my diagnosis of Fibromyalgia, about a year out from learning that I also had Chronic Fatigue Syndrome, Joint Hypermobility Syndrome, and Spina Bifida Occulta, and about six months into realizing that I haven’t been making as much progress as I would like, because I also need to deal with  several anxiety disorders, including PTSD. It’s been three and a half years since I was in an auto accident that changed my life forever. I no longer am content with “surviving” because it’s not enough, I want to do more than just get through the day. I want to thrive, chronic illness and pain be damned.

Stock-Image-Separator-GraphicsFairy11

Right now I’m really trying to remind myself to just make one or two changes at a time since I have another blog to get off the ground right now and don’t need to be spending so much time over here, but I can’t seem to stay away. At least I’m taking my own advice about making small changes one at a time instead of trying to overhaul the entire theme in one day.

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).

In Honor of Rare Disease Day 2015: The Difficult Diagnosis

I would like to take a moment to recognize that February 28th is Rare Disease Day.

The name implies that not that many people are affected, but that’s a totally false assumption. There are way more of us than you would ever guess! Many of these diseases are so rare that physicians do not know how to test for them, would not recognize the symptoms, or take adequate steps to obtain diagnosis. There is only room for a certain amount of information in each person’s head, and I’m not implying doctors aren’t doing their job, just that there are probably many more who live with rare diseases than are currently counted on the tally, which is already estimated at well over 300 million worldwide. I live with rare disease, I know many who do as well, and let me tell you, a rare disease is a special kind of hell burden. Doctors think you’re crazy for even bringing up genetic testing, they think you’re a hypochondriac if you tell them what your symptoms and odd blood tests match from all your painstaking research, which if you have a rare disease, you absolutely have to do, and they scoff at the mention of names they’ve only briefly skimmed in texts and never seen in real life.

WRDD template 9 no photo 2014

My rare diseases are ones that are actually fairly well-known, though doctors usually don’t know much beyond a one sentence summary (if I’m lucky), so finding proper treatment or even a specialist with a depth of knowledge on them is difficult. My path to finding a diagnosis is not over yet, and what I have managed to find out has been like pulling teeth. I know I’m one of the lucky ones just learning as much as I have so far.

When I first gathered the courage and research needed to talk to a doctor about Ehler-Danlos Syndrome, her immediate reaction was to call me fat. Yes, really. She looked at me, puzzled, and said, “Isn’t that a disease for tall and thin people?” and I had to bite my tongue, hard. I also had to accept that she was not going to help me with this. Not now, and not ever. She simply thought I was nuts, even though I match 100% of both diagnostic criteria. It was humiliating, I felt lower than dirt and like maybe she was right, maybe it was all in my head, I was making this up for attention or so I didn’t have to work anymore. She had me so confused at a difficult time in my life when I didn’t realize that pain affects cognitive abilities, and she definitely abused her position of power as a doctor, numerous times. I started to internalize all her comments about my psychiatric health, personality flaws, and physical unattractiveness. I lost trust in myself completely because I thought I was either dying or a liar, and I couldn’t figure out which one.

Unfortunately for my entire story, really, I was in the middle of a lawsuit with a company whose semi-truck hit me, so I didn’t want to switch doctors, even though she was pretty incompetent and wouldn’t sign off on X-Rays for months after my car accident, not to mention that she made me cry and hate myself and panic for days after every appointment. This doctor often repeated with obvious frustration that there weren’t a lot of options, she didn’t know what else to do for me, and that my panic disorder was obviously the root cause of all my problems, not my car accident. Sigh… there’s much more to my dealings with her, I have a long list of quotes that would make you cringe! But telling me it was all in my head was her favorite. She did it in writing, even.

Nevermind that I had actually been diagnosed with two relatively serious spinal injuries once we started taking X-Rays and MRI’s, and they were dire enough to warrant my two neurosurgeons getting excited and thinking they were going to get to cut into me. Both of them were told politely that for me, back surgery is not for curing pain, it needs to be done for a more compelling reason, or in the case where surgery will stop further degeneration. Neither one of those things is true for me, and neither doctor really believed that they could improve my pain in the long run. They both just wanted to “cut and see”. No. I have enough problems without botched spine surgery! In addition to the torn disc in my lumbar and the one in my cervical spine, there are also a set of birth defects including the Spina Bifida, plus 11 Schmorl’s Nodes (central disc tears that protrude into the vertebrae below), nerve root cysts, a random scarred area of my spine about a centimeter across, height loss and disc desiccation, bulging discs, disc degeneration/arthritis, and best of all, completely unexplained extra cerebrospinal fluid trapped in odd places in my spinal column, even two years after the car accident. I was told that none of that stuff was a big deal, but I beg to differ! At 22 I had more problems with my spine that most people in their 70’s or 80’s. That is not “normal”. As far as figuring out what out of all those issues is causing me pain? I don’t think it even matters at this point, studies have failed time and time again to relate MRI changes of the spine to specific problems. We all seem to experience them differently. Supposedly other people whose spines look like mine can actually function as if nothing is going wrong in there. Good for them. I guess I’m just rare on all accounts!

Ehler-Danlos Syndrome, Spina Bifida, Fibromyalgia, CFS/ME and Occipital Neuralgia

I sought out the local teaching hospital in desperation, starting at the pain clinic where I was, somehow unbeknownst to me, diagnosed with fibromyalgia, hyperalgesia, allodynia, and neuropathy. Since no one bothered to mention that I had been diagnosed with those things, I was still frantically looking for answers in a myriad of other directions, while waiting two months for my referral to rheumatology, where I finally figured out what was happening to me, or at least found out that I had been right all along to keep pushing, and to not let any MD stigmatize me into silence.

My primary care at that time still didn’t believe that I was in real pain, even after emailing back and forth with my fibro specialist, and I’m pretty sure she thought fibromyalgia was a fake diagnosis. She told me she was sure I didn’t have it even after two specialists diagnosed me months apart, at the most reputable hospital in the state. “Other people have it so much worse, just get over it” (not necessarily as true as she thought it was… I was just very stubborn about hiding how bad it had gotten because it made me seem even crazier). “You’re a smart girl, I don’t understand why you can’t figure this out” (thanks?). “If you would just eat right, this wouldn’t be such a big issue” (Wanna come over to my house and cook healthy every night and watch me throw it up later because many “healthy” foods hate my body? Didn’t think so… I’m doing my best. Food doesn’t cure chronic illnesses, though it does help). “I can’t do anything for your pain, but you should really start taking longer walks” (this was a favorite of hers… infuriating when you are trying to decide if walking to the toilet is even an option right now). “You won’t get better by taking time off work, you just need to try to get through it.” and best of all: “Oh, is that your sympathy cane?” Phew. Right. Because if you can’t see it, you must make the person feel terrible for having it. I struggled through years of increasingly aggravating (more like tortuous) physical therapy and massage, while my other symptoms began to make themselves known and I pushed them away, in denial.

It was all related to panic attacks, I told myself. Calm the fuck down, Jessi, then it will stop.

Except, it didn’t stop, even on a massive dose of 3mg per day of clonazepam, which works out to about 9mg circulating in your system at any given time, more if you’re a slow metabolizer.

I was stuck with that mean, bitchy primary care doctor, throughout the three years of wasting what little energy and brainpower I had on a lawsuit that failed because I was too exhausted, sick and in severe, never-endingpain to focus on seeing it through.

In the end I went into the office of the attorneys who represented the company that hit me, just me and my boyfriend, and I talked them up a couple thousand from the measly couple thousand they offered. I made the attorney I was arguing with leave the room to talk to his boss at least eight times, and after three years of work and hope and being told my case was worth hundreds of thousands because my life had been utterly destroyed by this accident, I was dropped by my lawyer within a month of my court date and told for the first time that the accident didn’t ‘look big enough’ to have ruined my life, and a jury would think I was malingering. I gave up, something in me snapped after three years of putting so much hope into being fairly compensated for what had happened to me on my way to work and all the torture I had endured since, all the tests and all the ER trips and the days spent in woozy pain land.

We closed the case in the enemy’s plush, modern law practice, at the beautiful inlaid table, in the room with soaring glass walls overlooking a rooftop garden and downtown Portland. When the attorney picked up my signature off the table and began to turn his back and walk away, I felt my soul deflating. I had been keeping strict wraps on my panic attacks for months up until that moment, but my body took over right then. It started as a swelling in my chest and a ripping sensation in my throat, and then a noise that sounded more like a dying animal than an upset human tore it’s way loudly out of my lungs. I am not sure how long I sat there and screamed at the top of my lungs, my boyfriend trying to close the curtains while people came up to the glass room like I was a monkey in a zoo, staring in at the girl freaking out for no apparent reason.

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What my doctors are starting to understand now, years later, is that I was so affected by the car accident because I was a perfect storm of bad genes, PTSD related scars in my spine and on my brain, and birth defects; a ticking time bomb that exploded when I was hit, and set in motion a cascade of chronic illnesses.

Ehler-Danlos Syndrome is congenital, and it often comes along with a host of other rare conditions, such as Chiari Malformation, POTS, OI or other autonomic nervous system failures falling under the category of dysautonomia. Having a tethered spine, cognitive impairments, Occipital Neuralgia/Migraines, Trigeminal Neuralgia, TMJD, Spina Bifida, Chronic Fatigue, and Fibromyalgia are all associated as well, among many other issues. There are two scales to help you figure out at home if you may need to bring Ehler-Danlos up with your own doctor; one is called the Brighton Scale, and one is called the Beighton Score. Either one is accepted as the standard for diagnosing the disorder in the absence of genetic testing, but it’s easy to measure both scores at the same time.

BEIGHTON SCORING SYSTEM for Ehler-Danlos Syndrome:

Beighton Score Chart: Evaluating for Ehler-Danlos Syndrome

It is extremely important to know if you have EDS, especially if female, one of the reasons being it can be an issue with pregnancy. In addition, it affects your connective tissues, which are not just in your joints, they are in your organs and throughout your body as well. It’s also important to know that if you suspect you have it, the treatment is not much different for EDS type III Hypermobility (the most common) as it is for severe Joint Hypermobility Syndrome, so even if you can’t get a formal diagnosis of EDS, insist on them writing the severity of your JHS in your medical charts for a more discerning doctor to pick up on later, hopefully, and then do physical therapy for hypermobility, but carefully and only under the guidance of someone who knows how to improve muscle tone around the joints without stressing them too much or risking them subluxing or slipping out!

There are 6 main subsets of Ehler Danlos, but even more variances than that exist within the condition when you get really technical. Some are much, much worse than what I suspect is going on with me. I have a friend I greatly respect and admire, who actually managed to acquire not one, but two forms of the rare disease in utero.

Here are the various types of Ehler-Danlos Syndrome:

The main six types:
Classic Type I, Classic Type II
Hypermobility Type III
Vascular Type IV
Kyphoscoliotic Type VI
Arthrochalasia Type VII A-B
Dermatosparaxis Type VII C

The actual meanings and specifics of all these diagnoses is variable and too lengthy to go into detail on here, but for more info, feel free to head over to EDNF.org (Ehlers Danlos National Foundation) which has a lot of good info for patients and physicians alike. I am still trying to hunt down a doctor who will agree to genetic testing, but in the meanwhile I am doing my best to learn to avoid subluxated joints and painful dislocations as much as possible.

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“More than 350 million people worldwide suffer from a rare disease. If a disease affects fewer than 200,000 people in the United States, it is considered rare. There are currently about 7,000 rare diseases identified worldwide, and approximately 80 percent are caused by genetic changes. These diseases are often chronic, progressive, complex, life-threatening, and affect the quality of life.”

via Global Genes: Is Genetic Testing My Path to Diagnosis?

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I was born premature. For many reasons that were unavoidable at the time, my mom was on medications that are now considered seriously unsafe to a fetus and one in particular which has been straight-up recalled by the FDA, called Terbutaline, to keep me inside, and to keep her alive while medical emergencies kept cropping up. It was not a fun pregnancy for my mom and it was her first, and I think in the disaster of incompetent doctors I just got lost in the shuffle. I was pronounced a healthy baby with a minor heart murmur and bi-lateral hip dysplasia, and no one even noticed the Spina Bifida and hypoplastic vertebrae. I can’t blame them, when you’re contemplating heart surgery on a preemie infant, I suppose there are enough things to worry about without actively looking for more issues. Now it is tested for regularly, and monitored for in families with a history, though it is not entirely clear if genes, environment, or more likely a combination of the two, are to be blamed for it’s appearance in a fetus. However, we do know that it happens within the first four weeks, and the risks of having a baby with Spina Bifida if you have it yourself are much higher than for someone without it, but are also greatly reduced by taking 4mg of folic acid a day. Doctors vary on how long a woman should be taking the folic acid for optimum results, but all say a very minimum of a month, some say a year, of taking a regular dose of folic acid and other prenatal vitamins before attempting to become pregnant.

My father has Spina Bifida Occulta as well, and the same cracking joints that get stuck, but he is the opposite of flexible. I, however, was a gymnast nicknamed “Rubber Band Girl” by my teammates because I was so damn bendy. My younger brother has Spina Bifida too, and is also still insanely limber and never ‘grew out of it’ like he was told, and has joint pain as well. I was much more active than him as a kid, involved in gymnastics, swimming, ballet, tee-ball/softball and just about anything else I could attempt my hand at.

My pain has skyrocketed uncontrollably throughout young adulthood, especially since my car accident, but before that I had pain that I thought was either normal or “no big deal” (although you could see by my declining test scores throughout middle and high school that it was a big deal) and tried to play it off in a variety of ways. I especially remember that getting picked up as a kid was something I dreaded with the wrong person, because too much digging in my armpits or hips or back was insanely painful. As a child and throughout being a teen, my hip used to pop out while I was lying in bed, and I would be frozen, silently screaming like the wind was completely knocked out of me until I could force it back in. But that was “normal”?

The Spina Bifida pain presented itself mostly as tailbone pain and low back pain throughout my childhood and teenage years. I could do more sit-ups than anyone else in a minute, in my entire grade, boy or girl, but I had to be on the cushiest stack of floor mats or I couldn’t even do one. Laying on a hard surface would make me sweat with pain. Again… why that was normal, I don’t know. Anything that requires lengths of sitting or lying on something hard left me wondering if I was going insane, or if I should tell someone how much it hurt. It took until last year to get a formal diagnosis of Spina Bifida added to my chart, but I am so glad I know now and that I know to seek medical advice before becoming pregnant, if that is an option for me at all in the future.

From my rambling about it, I’m sure you gathered that Spina Bifida is one of these rare diseases as well. It is widely screened for now, thankfully, and there is even a surgery that can be done in utero to close a hole in the spine of the fetus if the problem is very severe. People with Spina Bifida who are looking to conceive can obtain genetic counseling to see what their chances are of birthing a non-affected child.

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I had planned to write more, and maybe I will come back and do some more work on this post soon, as I just learned that this entire coming month is dedicated to raising awareness for rare diseases.

Related Media for Further Research:

http://www.rarediseaseday.org/ – An organization dedicated to bringing to light rare diseases and their causal factors. Networking for patients.

http://globalgenes.org/rarelist/ – A comprehensive list of almost all known rare diseases, with links to organizations where possible. This website also has toolkits for various life situations that face patients and caretakers, as well as packets for starting a fundraiser for rare disease. They have quality images for spreading awareness through social media as well. Most of the ones I used in this post come from their press release packet.

https://www.rareconnect.org/en – Hosted by trusted patient advocates, this is a place where rare disease patients can connect with others globally.

EDNF.org (Ehlers Danlos National Foundation) has a lot of good info, for patients and physicians alike. It also includes a section on how to find a diagnosis, and many of my friends have stated that emailing the organization can help push you through to an interested specialist as quickly as possible.

http://chronicillnessproblems.tumblr.com/EhlersDanlosInfo – An awesome collection of information assembled by a fellow blogger. Incredibly thorough and way more in depth than my little synopsis! She also has a wealth of links and research included, which is nice for those of us who like to learn as much as possible.

http://www.spinabifidaassociation.org/ – For 15 years the Spina Bifida Association has been seeking answers, spreading knowledge, and connecting patients. This website has a great selection of information for patients, practitioners, and caregivers.

Rare Disease affects Millions

Chronic Pain Toolkit: Affirmations

Gaining Ground Despite Chronic Illness

Since I first started going down the rabbit hole into the land of stranger and stranger medical mysteries, I have been losing things.

For three years, all I could see were the things that were slipping through my fingers, and I grieved considerably for each loss. I lost my job, my ability to drive, my self-respect, my future, and even at one point I let myself believe that I had lost the ability to be a good mother when the time comes. My grief was so strong that it blinded me to the possibilities that were opening up in front of me even as other doors closed.

Change is scary, from going to a new school, being diagnosed with a chronic illness, or starting a new business, newness is challenging. For myself, I had to learn to accept that I cannot change the stigma against Fibro alone, and I cannot make my doctors or my boyfriend or my mom understand it, but I can and have found others out there who feel what I feel and struggle with burdensome illnesses.Through reaching out to people in similar situations, I am hoping we can bring out the best in each other, and that is exactly what I have found here. Within the chronic illness blogging community there is so much support and enthusiasm that I can’t help but get swept up in it all. My healing process didn’t really begin until this blog got up and running. Yet, I have to remember that even once started, healing does not look like a straight line, especially with illnesses and conditions I will have for the rest of my life. I will always have very, very, very bad days and then there will always be awesome days to balance them out.

There is considerable strength to be found in just living to the best of my ability. Easier said than done, but a goal for me to aim towards!

There is no simple way to make the illnesses we face easier to confront, or even to take away the pain for a single day, as much as I wish otherwise. We spend our days fighting an invisible monster called Pain, and every day he is there when we wake up. We do the best we can, whether we are battling our illness from bed, from crutches, a wheelchair, a scooter, or our feet, every day is a marathon for us.

When we start to feel like we’re losing control of everything around us because of chronic illness and pain, the place where we have most control is in our self-care and self-love, which I couldn’t even fathom until I began to write a page of weekly affirmations. In the midst of the fear and chaos is acceptance. If you are in the grieving stage, I promise, acceptance is the best thing since sliced bread. It doesn’t happen overnight and it doesn’t happen easily all the time, but when you look back, you’ll see how far you’ve come. And it is worth it. We all deserve to accept ourselves, illnesses and all. If acceptance is an area you struggle in, why not try jotting down self-compliments or reassurances. They can be all the things you wish people told you, it can be all the things you believe about yourself, it can be as simple as saying “I am passionate about writing and I have a lot to say”, “I deserve to be loved”, or “last night I got enough sleep” or as complex as you need them to be. I feel like I’m not even writing when I do this exercise, the words just spill onto the paper from somewhere deep inside of me. I guess I must have been not allowing myself to think positive, comforting, reassuring things for a long time. I don’t know why, but I do know I have an awful lot of affirmations to get off my chest.  Certain ones I find myself writing over and over again each week and sometimes on other days as well. These seem to be things I have a hard time believing, but which are important to me none the less. Someday, hopefully even these hard-to-digest messages of self-love will begin to sink in, and gradually, as many of the other affirmations have, they will become a part of every day outlook. Affirmations have helped me gain so much that I didn’t even know I was missing. So instead of losing things, now I can focus on what is still there, what is inside me that I can love and share with the world.

If you’re looking for a good way to start 2015 off, writing down a list of positive things about yourself can change your perspective on life. It can give you that boost of self-esteem and motivation you were looking for. It’s easy, painless, and you don’t have anything to lose! I bet you will be amazed by what you find out when you start writing. ❤

I hope that everyone had a wonderful weekend!

Chronic Pain Toolkit: Taking Stock

Today as I was on my way from the bedroom to the living room with my stash of topical treatments for pain, I realized I must have a pretty decent collection by now, not even counting the twenty or so others I have thrown out. Each one goes with a different kind of pain that it helps to relieve, sometimes not enough at all, sometimes just enough to not scream. Sometimes I hurt so bad I forget I have them completely, and when that happens, they definitely don’t do me any good!

My current collection of topical pain relievers.

My current collection of topical pain relievers.

Do you have a small pharmacy at your disposal too? I better not be the only one who buys supplement after supplement that will supposedly help with pain (I was too embarrassed to take that picture, it would have scared you guys. So many bottles!!!), and I hope I’m not the only one who scours Amazon for the newest rubs, creams, and pain relieving ointments. Sometimes I hit gold, and I will make a list of my favorite topical and oral over the counter treatments very soon. The little gold and silver pen is a crystal powered “acupen”, not quite like the really nice $150 ones out there, I only spent $16 on this one, but it gets the job done on hands, feet, arms, parts of my neck, ears, jaw. It just blocks the pain signals temporarily by sending out a harmless electric pulse, it’s not magic, but hey, every bit counts when relief is slow in coming. Bonus: it doesn’t ever need batteries replaced!

I have told my boyfriend a million times that distraction is half the game. it’s why I talk non-stop sometimes when I’m hurting my worst, even though it gives me a horrid sore throat and I start to feel flu-sick after a few minutes of chatting. Even inflicting more pain is better than focusing on the pain. If that makes any sense at all. It probably does not, lol.

Sometimes I can’t seem to tune into real life, or break Pain’s hold on me. On those days I sometimes get depressed, anxious, and a little desperate. I feel outside of myself and “other” somehow, like I have nothing in common with the people around me, or like I shouldn’t be around people at all. Now I (try to) channel that bad energy into looking for at-home treatments to try or new ways of thinking about my illness that make it feel a little less like the massive burden it is. Every single little trick helps!

BTW, the most effective combo for my pain so far is Topricin, and my specially-mixed-for-me prescription of Ketamine 10% / Keprofen 10%/ Tetracaine 4%. But I actually do use every single one of the things pictures here on an almost daily basis, because I can only put the creams on so many times each day so I rotate through all my options frequently.

If anyone has anything to recommend, I would love to hear about it! I can’t handle anything that is too much like IcyHot, because that burnsburnsBURNS. But lighter cooling/warming products are usually okay.

Hope everyone is having a relatively pain free day. ❤

Considering the Emergency Room? Here Are Some Pointers to Keep in Mind if You Have Chronic Pain.

What to Do When You Have to Resort to the Emergency Room (When You Have a Chronic Illness)

A trip to the ER is no fun, no matter how you spin it. When you’re a chronic pain patient or someone with a chronic illness that can cause bouts of severe pain, it can be a complete and total nightmare.

A patient with chronic pain can help the Emergency Room staff to understand that their medical problems, especially pain, are a legitimate emergency by following a few guidelines and suggestions that will lessen some of the unpleasant drama of going to the ER.

Always bear in mind that the Emergency Room is a last resort, and Urgent Care will almost always turn away a patient with a chronic illness. Hospitals are so wrapped up in covering their asses legally that they have started turning away chronic pain patients much like Urgent Care does, even when the need for treatment is real and immediate.

Your regular healthcare team, especially your Primary Care Physician, is by far your best bet for getting help managing a chronic condition that is spiking out of control, but sometimes the ER is the only option. When that happens, here are some tips to help make your experience more manageable:

  1. Make sure that you have a regular physician who treats your chronic pain. That’s a relationship that all chronic pain patients should establish before they ever set foot in an emergency room. Without this all-important steady doctor-patient relationship, the rest of this list is not really possible. In terms of seeking out aid in the Emergency Room for a spike or flare of pain having to do with an ongoing condition or problem, even having a bad doctor is better than no doctor at all. If you are having trouble finding a primary care physician who actually does care, the best place to start looking are local and even national support groups for your condition(s). They will have lists of hospitals and even specific doctors in your area who have been a good match for others in your situation. If those doctors are not taking patients, don’t be afraid to ask their staff where they would recommend going or if that doctor can make some recommendations of physicians they know to be effective at treating your condition. This search can take a while, but always keep a PCP on file, if you at all can. Not having a primary person who writes your prescriptions and handles your referrals makes the staff in an Emergency Room nervous no matter what.
  2. Show that you have tried to contact your regular doctor before you go to the ER. If you have been in pain for five days and have not alerted your doctor, the ER staff will question how bad your pain really is. Even if the pain struck out of the blue that day, make an effort to contact your regular doctor first. ER staff will be more sympathetic to patients who have called their doctors and been told to go to the emergency room because the doctor was unable to see them. At least you’re showing you made an effort and only using the emergency room as your treatment of last resort, as opposed to the primary place you go for pain medication. This is important, as unfair as it is, they will not give you proper care if you are using the ER too liberally. Having your physician back up your story is never a bad thing, it helps establish legitimacy and urgency, and can help push you through to getting treatment sooner rather than making your wait for four hours “just to make sure you’re really in pain” before giving you any medication or imaging.
  3. Bring a letter from your doctor. A letter from your physician, with a diagnosis and current treatment regimen, is a logical, completely reasonable thing to carry with you, particularly if you’re on a regular dose of opiates in today’s atmosphere of distrust and disbelief of pain patients. Always make sure the letter has your doctor’s name and phone number. That way, if ER doctors want to contact your physicians, they can. This is especially useful if you’re traveling or going to a hospital that you have never visited before.
  4. Bring a list of medications. Bring a list of your medications, instead of relying on memory. Usually the hospital will already have access to the list of everything that you have taken for the past several years, so don’t try to lie about it, you will only hurt yourself in the long run. Always be honest about medications you have taken or have been prescribed.
  5. Work cooperatively with emergency room staff. It might not be fair, but if a patient comes in screaming and shouting that they need pain medication right away, the staff isn’t going to like it. Being loud and distressed will call negative attention to your actions and makes hospital staff that much less sympathetic. You might be in agonizing pain, but the staff is going to be more concerned with “drug seeking behavior” than your well-being. So rather than demand things, try to work cooperatively with the staff, even if they’re not being cooperative with you.
  6. If you have an alert card or pamphlet explaining your condition, hand it to them and ask for it to be put in your file. For instance, I keep a card in my wallet explaining that I have Ehlers-Danlos Syndrome and detailing the worst parts of the illness and information that is pertinent to an emergency. I also listed my most severe medical allergies around the border of the card in big black block letters. It’s important for the staff to know what is going to cause more pain & what may help.  If you have a rare condition or one that is frequently misunderstood or which is conventionally thought to not cause pain, bring a relevant pamphlet from an awareness or advocacy group with you. Consider buying one of the brand new USB alert bracelets, pendants, or wallet cards. These plug into a computer in an emergency if you can’t speak for yourself, and they can be uploaded with as detailed medical information as you want, from medical history and current doctors with phone number and addresses to info like allergies, current medications, current medical concerns, and alternative treatments/supplements as well. Most manufacturers understand that a computer might not be nearby in an emergency and have a phone number printed on the back of the bracelet that you can call to access the information as well.
  7. Ask for a nurse advocate or make sure someone is with you. This will help you when trying to explain things to the staff. It helps to have another person there to advocate for you.
  8. If at all possible, use the same Emergency Department as the last one you went to, your pain will be that much more believable if you always use the same place. Plus, you might actually get doctors to take an interest in your chronic pain condition and maybe even other conditions that can cause a chronic illness patient to end up in the ER. Think about the ramifications that could have down the road for future patients!
  9. Finally, since there are a lot of easy-to-forget details in this list, especially in the fog/panic/blacking out that happen whilst in horrific pain, I like to keep a folder handy with all those details written down, as well as a copy of most everything I need to bring with me. It isn’t always updated with the newest things I’m taking, so I bring the bottles themselves if I am on anything different since the last list was written. Being organized shows the ER team that not only do you take your condition(s) seriously, but that you have done all you possibly can to avoid the Emergency Room and to only use it as a very last resort.

About two years ago I was turned away from an ER without treatment by an extremely ignorant physician (after toughing it out all night crying and screaming at home), I had to contact and be seen by my pain doctor the next morning and then was sent right back to the same ER, only this time I was told to have them call my pain clinic when I got checked in. I did not want to go back there, but things went a lot smoother the second time, despite my apprehension. I was given the correct sedatives for once, and no one yelled at me or gave me super judgmental looks. I was treated for pain, monitored, and released without being asked to pee in a cup or otherwise treated like an addict. It was the only decent Emergency Room experience I have ever had, other than being in constant, black-out, vomiting, excruciating, unrelenting pain for almost 48 hours prior to finally receiving treatment and not sleeping a single hour of that time, all from an Occipital Nerve Block injection that was supposed to be a diagnostic tool, gone horribly wrong. (Hint: If your gut says “Do not do this, it isn’t safe” then listen to your gut, or it probably isn’t going to turn out well. I knew in my soul that the injection wasn’t going to be a good thing for me, and I don’t even have a minor fear of needles.)

I haven’t been back to the ER since, I have to admit I have stayed at home through even worse pain than that episode since then. No part of my soul trusts the Emergency Room to treat me, as a 26 year old fibromyalgia and chronic fatigue syndrome patient with occipital and trigeminal neuralgia, Spina Bifida Occulta, Joint Hypermobility Syndrome / Ehlers-Danlos Syndrome, with damaged vertebral discs at the top and bottom of my spine and everywhere in between, just to name a few of my chronic pain conditions. None of that matters because what they see is a 26 year old who usually hasn’t showered in days, is twitchy and fidgety (pain makes me move nonstop sometimes), sweating profusely (a fibro symptom having to do with autonomic nervous system dysfunction or dysautonomia), has a hard time walking in a straight line, and usually I am extremely angry or panicky, one or the other. There isn’t a lot of sympathy for me if I don’t do absolutely everything right when I go to the ER.


It’s certainly not fair or acceptable, but the Emergency Room just is not cut out for dealing with us; the tough cases, the ones who can’t be “fixed” or “stabilized” because in hospital staff eyes, we are already stabilized and not in any immediate danger. Yet pain is dangerous. Chronic pain over a life time is more damaging to the actual structures of the brain than taking hardcore opiates every single day for the rest of your life. That isn’t to say that there isn’t some middle ground to be found here. I do not advise hardcore opiates for chronic pain on a daily basis, especially at my young age, because if I take heavy opiates now, years down the road when I need surgery or dose titration, eventually there isn’t anything else to elevate to by the time I’m in my late 30’s. That’s not how I want to end up. The only painkillers I currently take are tramadol and medical marijuana for breakthrough pain and seizure activity.
I have learned to make do, but it took years to figure out just how little I can do off of painkillers without my condition deteriorating. I’m still trying to adjust, trying to find the sweet spot between too much and not enough, and knowing that life with a chronic illness will always be a delicate balancing act.
I’m not just saying that heavy opiates are a bad idea, I actually used to take anywhere from two to ten 5mg oxycodone every day while I was working, and while it did not take the pain away, it made me more able to do things, more willing to put myself through pain over and over again all day long. I could still drive at that time, purely thanks to opioid medications, but I don’t think it was healthy to push so hard that I had to pop pain pills like mints, just to stay upright and not cry through my whole shift. At one point I was even on morphine every night to sleep just a couple of hours. Clinics were offering me methadone, which I vehemently turned down.
I had a rough, rough few months when my first visit with a brand new doctor ended with him taking me off oxy and morphine all of a sudden in the middle of a flare, no weaning, just completely off of opiates (and chronic fatigue/ADHD medication at the same time too) cold turkey without even the slightest heads up. I wasn’t even given tramadol by that asshole. I had to call crying in pain four times in one week before he would even write a tiny prescription for 12 (yes, one freaking dozen) during a two month long flare up! So humiliating. He also told me not to go to the ER no matter how much pain I was in. What a complete idiot. His favorite phrase was “at least you’re not in a wheelchair”. I could barely contain my hatred every time he said that or my other personal favorite: “you are a perfectly healthy young woman”. Not my weight, my blood pressure, my mental health, or my chronic pain conditions were healthy about me, so I was partly just shocked he couldn’t think of any reasons I wasn’t healthy.
Yes, middle ground. I understand that “as-needed” for a chronic pain patient can mean literally anything, from almost never to pretty much always. So I say with caution and leaning more toward the almost never side of things, “as needed” pain medication can save your life. When you need it, and you really need it, you know best, and you deserve to be treated correctly, efficiently, and even compassionately by ER staff. The above suggestions should help cut down on the emotional trauma that people with chronic pain often associate with going to the Emergency Room. In our greatest time of need, it would be nice to actually be able to count on getting help when we seek out this last resort in our coping toolbox.

Chronic Pain Awareness Month

Chronic Pain Awareness Month

September is Chronic Pain Awareness Month

I hear it echoed over and over again by my friends, my self, and chronic illness writers across the web. The hardest part is getting those around you to understand what chronic pain takes away, not only from your physical capabilities, but cognitive abilities, focus, social functions and so many other things, too many to list. What the general public and even caretakers and close friends may not know is that chronic pain changes everything, from taking a shower to driving to thinking clearly in a meeting to not cutting a major artery in a surgery. Some days, I feel lucky to have done the dishes even if I did nothing else that day. Sometimes just surviving is overwhelming. If I can do nothing else, on my days when I am resigned to a chair or the couch, I want to help spread the word about the real bravery of the men and women who wake up each and every morning in unending, unforgiving pain. In addition, I desire so much to ease the transition for newly diagnosed patients with chronic illness through education, advocacy, and compassion. As a community of chronic pain patients one of the most pressing issues is to get a realistic, non-romanticized version out to the public of what it is like to be ill and not be able to rely on your body, or even you brain, depending on the day.

I am the same person I was before my illnesses took hold, but I am also different. I speak differently, and I speak about different things. I spend most of my day distracted by pain, and looking for a distraction from it. I am sure that the people around me no longer believe all the crazy things that are happening within my body can possibly be happening to one person, all in one month, and that is part of the stigma of chronic illness. I too didn’t understand what it meant to look fine on the outside but deal with so many problems within your body that even basic work was impossible. Five years ago, I would have pointed at someone like me and said “oh, she’s exaggerating, it can’t really be that much worse than my _____ (insert: back pain, flu, headaches, anxiety, arthritis, whiplash injury) and I worked though all of those things” but I was wrong. I was so terribly wrong that I guess life had to prove it to me in a pretty brutal way. How does that saying go? Judge not, less ye be judged?

I figured, especially because I was one of the judgmental voices, the harsh and unforgiving “them” who could never understand chronic illness, and now I understand all too well, maybe I should be one of the ones who helps shed some light on the many unseen and unspoken hurdles facing patients with a myriad of rare, invisible, incurable, and terminal illnesses. I’m honestly guilty of still trying to hold myself to standards that I cannot achieve with my illness in full force like it currently is. Hopefully in the midst of promoting acceptance and support from caregivers, relatives, friends, significant others, healthcare professionals, and the media, I can also sway some fellow spoonies to take it a little easier on themselves too. If you are dealing with daily pain that will not relent, try to gently remind yourself that you won’t gain any ground by ignoring your symptoms.

The road to being okay with your new life as someone living with chronic pain is paved with research, acceptance and acknowledgment of your symptoms. For those of you who are not in chronic pain, likewise, researching your loved one’s disease, then verbally showing acceptance and acknowledgment is the best gift you can give someone who is suffering. It is amazing what hearing the words “I believe you” can do for the soul. It is like being wrapped in a big soft blanket and having a hot cup of cocoa placed in your hands on a cold day.

Never forget that you own the right to tell your story as raw and honest as you feel comfortable with. You aren’t just doing yourself a favor by getting it out of your head and into writing, you are promoting awareness by removing the myth from your illness. Your pain may be invisible, but that does not make it any less real, any less scary, or any less debilitating than a visible injury. We spoonies all have a lot of people to prove wrong, from the 1/4 of primary care physicians who believe most of their chronic pain patients are faking, to emergency rooms that are ill-equipped to deal with chronic conditions, to unsupportive families who refuse to do their research, and of course general stigmas against pain patients that have existed for ages. These are all barriers to effective research, communication, and seeking out treatment. But they are obstacles that we as a group can overcome.

Raise your voices, tell your triumphs and your horror stories alike, others need to see what we go through on a daily basis and speaking out helps to break down those barriers and create road maps for understanding the whole of chronic illness, not just the symptoms, but the underlying causes and the body-wide effects created by living a life in constant pain. I know it is difficult, but only when we are not afraid to share what we are going through will we transform the silent suffering of people with invisible illnesses and chronic pain into a growing understanding that we too deserve to be treated with the dignity, respect and even admiration for what we deal with on a daily basis. It’s not just an idea, it’s a necessary change and we have the numbers, the intelligence, and the determination to make it happen.

Click on the thumbnail below to go to the larger version of my painting for Chronic Pain Awareness:

Chronic Pain Awareness Month

Chronic Pain Never Quits, let’s give the huge number of people worldwide suffering with chronic pain conditions some hope! There are many misconceptions about people with chronic pain, and these can easily become stigmatization that negatively impacts those who already suffer enough going through the daily horror of chronic pain.

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