Archive | Sharing is Caring RSS for this section

Distraction Therapy, A Guest Post For AXIS Dance Company’s Awesome Blog, And Exciting New Business Ventures

I know it’s been a while, I’m sorry to leave anyone hanging, I did not intend to abandon my blog for so long. I have been very busy while I was away from writing, I promise! One of the last things I wrote before I went on hiatus this past summer has just been published, thanks to my brilliant friend Rebecca, as a Guest Post on AXIS Dance Company’s blog. The article I wrote covers the topic of distraction therapy in relation to managing chronic pain, something I am incredibly grateful for. This isn’t the reason I have been gone, but it is something I have been wanting to write about my experience with for a long time. Though it was written months ago, when I came back to read it yesterday, I discovered that it applies even more now.

Here is the link to the post I am so excited for the opportunity to have written:

JESSI CHVAL ON DISTRACTION THERAPY AND CHRONIC PAIN

Published on November 24, 2015

Blog Editor: Rebecca Fortelka

In the guest post, I make sure to include steps I have taken to prevent losing my creative force. There is a portion dealing with guilt that was especially appropriate for me to remind myself of this week. I also describe my top ten distractions and some of the ways I have modified those activities so that they are still possible to enjoy, maybe not every day, but regularly. I am seeing first hand that with practice, pacing, and modifications to favorite activities, you can still lead a fulfilling, richly creative life in the face of chronic pain or illness (or both).

One activity swap I have done is due to not having the energy or physical stamina to paint any more, at least for now. I was devastated at first. Losing painting hurt so much and left such a void, and my grief over not being physically capable of painting seems to come in waves. Knowing how far away from myself I feel when I can’t garden, paint, or cook, three of my more physical hobbies that used to dominate my free time, I took the opportunity to rekindle an old hobby; beadworking and jewelry making! I am loving every second of it, even with the arthritis in my hands, this is something I can do in bed or sitting up.

The reason I have been gone for so long is that I opened an Etsy shop to sell my jewelry and artwork. The shop is called The Hopeful Spoon, where I design, make, and sell Awareness Jewelry for spoonies, as well as Boho beaded creations for the free-spirited style-hunter. Some select pieces of artwork are slowly being added to the store as well. In one month of being open for business so far, I haven’t done half bad! Currently, I am averaging a sale every other day, which is about a quarter of where I need to be, but definitely gives me hope that I can meet my goal in the not too distant future.

Many people have helped me get started, and if I could continue sitting up today, I would give them each the credit they deserve, but that will have to be my next post!

For my readers, I have special spoonie discount codes, as well as two public coupons that are displayed in my shop announcement. The first code is 10SSPOONIE for 10% off of any price order, and the second is 20SPOONIE for 20% off of $50 or more! Happy holiday shopping, and thank you for checking out my newest artistic endeavors. I am loving having my passion for art back in my daily life. I hope you love the designs I have been working with as much as I love creating them. Here is a peak at just a couple of the goodies up on my new shop, with more being added almost every day:

iusb_760x100.17030474_gr53

Etsy Gallery

 

Glad to be back here again, and I can’t wait to see what new achievements 2016 will bring.

Thank you so much for reading my guest post at AXIS Dance Company, checking out my jewelry shop, or sharing either project. I have had a happy, silly grin on my face for days despite it being a really symptomatic week.

I appreciate all the help I have been so fortunate to receive from my spoonie friends, because it is your help that my relatively good first month of business is built on.

Don’t forget the coupon codes if you head over to my shop! They do not expire until January 31st.

Hope everyone had a very tranquil Thanksgiving full of all your happiest holiday traditions.

Harms/Benefits of Somatic Symptom Disorder

Wow. Just wow. There are NO benefits!

EDS and Chronic Pain News & Info

Diagnostic Ethics: Harms/Benefits- Somatic Symptom Disorder | Psychology Today

“…a staggering forty-five percent of autoimmune disease patients report having been denied medical care because doctors mistakenly diagnosed their symptoms as somatoform.

While the title of this piece implies there are both harms and benefits, I have not been able to find any benefits of this new DSM V diagnosis.  Many health professionals are already warning about the harm it will cause – especially to people with devastating physical symptoms of an as-yet-undiagnosed illness.

There are five possible explanations whenever someone presents to a doctor with physical symptoms that have not yet been diagnosed:

View original post 668 more words

A Spoonie Poem for All With Chronic Illness

My friend Misty is a Lyme Disease fighter, and she’s been fighting it for more than fifteen years, though she was diagnosed within the last two years, about the same time I found out I had fibro. We grew up in the same small little town towards the Oregon coast, and since I never went to high school with her, being sent off to private school instead, we didn’t have an opportunity to speak for many years. Thanks to the magic of facebook, we are back in touch. I’ve learned a lot from Misty.

In addition to being a totally courageous and fabulous warrior kindred spirit, she is also a mom to two little ones. She just had her second, against all odds, against everything she’s been told by doctors about her prognosis. She keeps searching for a cure on her own, she keeps educating others about tick borne diseases, and she keeps building her family. She fights LD with a holistic, carefully researched approach. That kind of honesty and determination deserve some love. Though I wish she had her own blog to record her thoughts because her writing is incredibly strong and poignant, you can understand why a mom to a little boy and a new baby girl, a mom who suffers from advanced Lyme Disease, does not have the energy to keep up a blog. When she posted this poem on her facebook, I had to ask if I could share it on her behalf, because I’m feeling really lost and this piece of writing calmed me down and reminded me that as much as I’m feeling rejection right now, there is a lot of love in the spoonie community, enough to make up for what I’m missing. We are never fighting chronic illness alone, no matter how geographically separated we are, we spoonies do such a great job of always lifting each other up with what little energy each of us has.

I’m really delighted that Misty said I could share her beautiful poem, and I hope it helps someone else feel less alone and more understood.

THIS IS DEDICATED TO ANYONE SUFFERING FROM CHRONIC ILLNESS:

by Misty Perkins
when all your talents are unusable
All your intelligence faded away
That spark you had has flickered
When all your motivation taken away
When all the things that define you are gone
what is left at the end of the day?
When memory fades
All you feel is confusion and rage
When your bones ache
And your body disobeys
How do you answer when they call your name?
Are you really you, when you’re not the same?
When you can’t find yourself
And you’re lost in a daze
Does anyone care to trouble with the maze
Will they see you there, or pass on by
Will they hold you tight
Or watch you cry
When you have no one else, and you’re lost to yourself
How do you cope, when no one can help?

I don’t have the answers to those questions, but I am closer than I was a few years ago. Progress, not perfection!

Thanks you, Misty, for allowing me to put your poem on my blog so others could benefit from it too.

Ehlers-Danlos Syndrome Medical Emergency Information Cards

Handy to print out or save to phone in case you end up in the hospital: edsemergencycard

This card is to go with my post on How to Use the ER in Case of Chronic Pain Emergency, which has gotten over 50k views in just under a year! I never thought anything I wrote would be shared to facebook 10k times, or viewed 50k, or shared all over Pinterest, or anything remotely close to that, honestly, especially in my first year of blogging. I’m so thrilled and so thankful for the opportunity to share what I have researched and witnessed firsthand about living with chronic illness, chronic pain, disability, and mental health challenges.

I will be hunting down more relevant alert cards and posting as I find and edit them. Please feel free to leave suggestions in the comments below, and I will do those first!

#ehlersdanlossyndrome #emergency #alertcard #justincase #infographic #chronicillness #chronicpain #EDSawareness #EDS #hypermobility #dislocation #subluxation #JHS #hointhypermobility #hypermobility #severepain #EDSalertcard

from Instagram: http://ift.tt/1cOstTW

INvisible Project – Emily Lemiska | Klippel-Feil Syndrome

Like any fourteen-year-old preparing for high school, Emily Lemiska felt self-conscious about her appearance. She wasn’t worried about her weight, hair or skin. Emily was self-conscious about her abnormally short neck. She asked her parents to make an appointment with her pediatrician to take a look. Emily, her parents and her doctor alike were shocked when an X-ray showed she had Klippel-Feil syndrome (KFS).

via INvisible Project – Emily Lemiska | INvisible Project.

Klippel-Feil is a spine disorder characterized by the fusion of two or more cervical vertebrae, which decreases range of motion and flexibility in the neck. It is known to cause pain, especially later in life, and increases the dangers of even minor trauma to the neck. With reports estimating the condition occurs in one in 40,000 live births, KFS is considered a rare disease. Emily’s case is even more atypical in that seven of her vertebras, C2-T1, are fused.

Fortunately, Emily was asymptomatic, with no pain or discomfort. Nor did she appear to have any of the additional abnormalities – ranging from heart defects to hearing loss – sometimes associated with KFS. Although she could no longer participate in some of her favorite activities like playing volleyball or riding rollercoasters, which put her at risk of whiplash or other injuries, she was able to maintain a normal life. While doctors continued to monitor her neck annually, her health thankfully stayed the same. Although she felt a little isolated because of her condition, for the most part, instead of worrying about KFS, Emily was able to worry about the usual teenage woes like boys and grades.

Determined to experience life to the fullest, Emily left her small town in Connecticut to attend Northeastern University in Boston. She excelled in her classes, formed friendships with a tight-knit group of honors students, and met her now-husband, Dan. She was extremely active in extracurricular activities, serving as editor-in-chief of the literary arts magazine, vice chair of student media and copy editor at the newspaper. Even with her busy schedule at school, she managed to work part-time and volunteer on a regular basis.

In 2008, after a semester abroad in Barcelona, Emily graduated summa cum laude with a bachelor’s degree in English. She accepted a position at Mass General Hospital in the public affairs department, where she served as editor of the hospital-wide newsletter, spearheaded communications campaigns and interacted with local media. Her job was chaotic at times, but she loved it. She took pride in her work and became a valuable asset to the team.

Emily found an outlet from her demanding job in the form of running and weightlifting. She liked the way physical activity made her feel, and the doctors who continued to monitor her encouraged an active lifestyle. She had no idea that an upcoming five-mile run would change the course of her entire life.

That springtime “fun run” around the Charles River in 2011 would be the last time she ever ran. The day after the race, Emily was startled by brutal shoulder and neck spasms that crippled her with pain. When they didn’t subside in a few days, she made an appointment to see her doctor. He was perplexed. X-rays and MRIs didn’t reveal any reason for her sudden symptoms. He assumed she strained a few muscles, prescribed Valium and a neck brace, and suggested taking it easy for a few weeks.

The next two months were torture. Emily couldn’t use her arms or lift anything without excruciating muscle pain; even typing at work irritated her shoulder muscles. With every movement, her entire spine felt as though it was being yanked. Walking and riding the bus to and from work became dreaded endeavors, and any vibration caused unimaginable discomfort. Getting through the workday became her sole focus: she quit exercising, stopped volunteering at the local library and declined invitations from friends. Dan and her two roommates had to help her with even the smallest tasks, like making dinner and cleaning.

The symptoms only intensified. In July, Emily woke up before dawn to discover her left side completely numb. Terrified, she called her parents and then took a taxi to the emergency room. Again, the doctors were at a loss.

The ER visit led to a consult with a neurosurgeon. Within minutes of reviewing her neck imaging, the physician told Emily and her dad that she had another abnormality besides fused vertebrae: a tethered spinal cord. This neurological disorder is caused when spinal cord tissue attaches to the spinal column, limiting the movement of the spinal cord. He also discovered that in the same area, Emily had diastematomyelia or a split spinal cord. In hopes of halting the progression of these conditions and lessening the pain, he proposed emergency neurosurgery to untether her spinal cord.

Dan’s commitment never wavered despite the stress on their relationship. In fact, he embraced Emily more fully than ever, proposing to her three days prior to her operation. In the days leading up to surgery, Dan began referring to her as his “brave little toaster,” a reference to the 1987 Disney movie about an animated toaster who faces many obstacles on his journey to find his owner.

The six-hour surgery, by technical standards, was a success, and the spinal cord was freed from the spinal column. After seven days in the ICU, she went home to Connecticut to finish her recovery. Determined to return to normal life, Emily went back to work only a month and a half later. She immediately realized she had returned too soon. The pain returned quickly and with vengeance.

For the next year and a half, Emily put on a brave front as she tried to keep the life she loved. Work was excruciating – she would sneak off to lie down in the conference room, come in late and leave early, and work from home as much as possible.

“I was absolutely miserable, but too stubborn to show it outright. By the time I got home at night all I had the energy to do was cry. I felt completely dehumanized by pain.”

Weekends were no longer spent enjoying all that Boston had to offer. Instead, she would lie in bed, trying to recover from the week before and prepare for the one ahead. All the while, the muscle spasms and nerve pain were unrelenting.

Her frequent doctor visits left her discouraged as well. While following the doctors’ suggestions, nothing subdued the pain. Because her muscles were irritated and her spinal cord increasingly sensitive post-surgery, treatments like physical therapy and injections would sometimes even exacerbate her issues.

In December 2012, Emily made the difficult decision to leave her position at Mass General Hospital. Much of how she defined herself was her successful career. Quitting was a huge loss, but she had no choice. With Klippel-Feil being a degenerative syndrome, Emily had to slow down. She needed to change tactics, and instead of constantly playing defense against her aggressive symptoms, she had to go on the offense. It was important for her to protect her baseline so as to not regress further.

Back in Connecticut, Emily and Dan moved in with her parents for six months before finding an apartment nearby. Emily’s dad now drives her wherever she needs to go, and her mom, a registered nurse, attends all of her major doctor’s appointments. This extra help has been much appreciated – knowing that Emily would not be able to work, Dan is attending law school in hopes that his career might make enough income for two.

To manage the pain, Emily takes more than 10 pills a day. Eager to be free from the side effects of her medications – including fatigue and mental cloudiness – Emily continues to pursue treatments that don’t come in tablet form. She and Dan also hope to someday start a family, and the drugs she takes are not conducive to pregnancy. Among the options she is considering is a spinal fusion surgery. This would entail implanting rods and screws to reinforce her spine. Although it might be her best option, there are great risks involved, and doctors are not sure whether it will help significantly. The rarity of her case means it is impossible to know whether it’s the right decision – there is nothing to compare to, no KFS studies to point to a positive outcome.

If she does choose to have surgery, Emily knows that it may not be a full solution. She hopes that the right combination of Western medicine and complementary therapies might bring relief. An epidural nerve block, for example, decreased nerve pain in her face for a short time. Acupuncture and massage also help with the pain, as does wearing a neck brace and heat and ice therapy. To keep the rest of her body active, Emily stretches every day, goes for short walks several times a week and recently began swimming. All of these activities require modifications; for example, she swims using a snorkel mask to avoid having to move her neck to breathe. But Emily says that doing an adapted version is far better than doing nothing at all. The goal of being a mom and publishing her personal writing one day drives her to stay positive and proactive during her search for better answers.

Emily’s life has completely changed due to the progression of her disease. She has had to redefine herself entirely. Not being able to work, having put such emphasis on her job, has been a major loss. She misses her hobbies, like running, playing the piano, cooking and volunteering. It especially bothers her that she can no longer help others, but instead, is the one who constantly needs help.

“It is hard to be 28 and unable to enjoy life as much as I want to,” she says. “My to-do list and my body don’t see eye-to-eye. Each day I have to find a balance between pushing myself enough to feel accomplished, but not so much that I’m hurting myself.”

Emily still does the things she loves, but in small doses with lots of rest in between. And even though her activity is limited, she says she never feels bored. To keep busy, she reads, listens to podcasts and TED talks, takes online courses, meditates and writes. She continues to do occasional writing projects as a freelancer, but only as the pain allows. She also enjoys taking trips with Dan and having friends over to visit. Emily jokes that even with all she does, it’s difficult not to feel like a professional sick person. Much of her daily routine consists of taking care of herself, scheduling appointments and dealing with insurance and disability paperwork.

While initially denied disability earlier this year, thanks to help from a state health care advocate, she was approved in September after a long appeal process. The stress of being disbelieved and misjudged was difficult to take. Knowing there is a negative public view of those needing to use disability benefits, she wishes others understood that the majority applying for help really need it. Like her, they want to work but are truly unable to due to severe health limitations. Without assistance, she is incapable of supporting herself. In fact, she and Dan had to rely on food stamps for a few months just to get by.

Emily is not ashamed talking about her personal trials, even financial ones. In fact, she is very open about the truth many in the pain community experience every day, even when it is hard for others to hear. She feels if more people were open about their hardships, there would be fewer stigmas and less misunderstanding about chronic pain. She believes sharing struggles does not make a person weak or vulnerable, but shows strength.

For this reason, Emily keeps a blog. Not only is it personally cathartic for her, but it is also a way for family and friends to stay in the loop. Occasionally, posts are so widely shared that they serve to help increase awareness about chronic pain among individuals outside her inner circle.

Emily believes all who live with pain should keep some sort of blog. It is a way to express emotions that might otherwise be difficult to release, while allowing those who know you a chance to understand more about your challenges.

Through her experiences, Emily realizes that giving up is not an option. If she could stress one thing to her pain peers it would be to become an expert on their particular diseases. “You have to advocate and fight for your care. Answers may be difficult to find, but never stop searching or hoping. It may take time, but the medical community makes advances every day. You don’t want to be the one to give up the day before they find the treatment the helps you.”

Emily keeps abreast of developments in spine care through Google Alerts and by reading research abstracts from medical journals. She stays on top of her own care by requesting and reading her medical records, bringing a list of questions and taking notes during appointments, and getting multiple second opinions when necessary.

Emily also stays connected and informed through the resources she receives from the Klippel-Feil Syndrome Freedom. This small, grassroots nonprofit is trying to help people afflicted with the disease obtain support, strength and information. Created by other Klippel-Feil patients, the organization is personally dedicated to the cause.

Through this group, Emily finally met another individual with this disease, fourteen years after her diagnosis. Being able to connect with someone like her was life changing. For the first time, Emily did not feel so isolated and alone in the world. She had met someone who fully understood – and she was delighted to see that this fellow patient had two children of her own.

In her small way, she is doing her part to advance care for KFS patients. She is working on a KFS survey to collect data on patterns of abnormalities, symptoms and treatments tried. She hopes the results will help inform the medical community while empowering those living with the devastating disease. She is also planning a holiday fundraiser for 2015 – featuring a skeleton key holiday ornament – with proceeds benefiting KFS Freedom.

Cheerful and determined, Emily chooses to live in gratitude. While Klippel-Feil is progressive, she knows she is blessed with an amazing support system. Her parents, friends and husband go above and beyond to show her she is loved and that she is never alone. Her doctors aren’t sure how much worse her condition might become as time passes. But Emily is not giving up on life; rather, she is embracing it.

“People often seem surprised at how positive I am,” says Emily. “We all have a tendency to underestimate ourselves. No matter what life throws at you, you can and will find a way to live the best life possible.”

Resources:
Klippel-Feil Syndrome Freedom –

Klippel-Feil Syndrome Alliance – http://kfsalliance.org
Klippel-Feil Syndrome Alliance Facebook page –

https://www.facebook.com/KlippelFeilSyndromeAlliance

via INvisible Project – Emily Lemiska | INvisible Project.

Trigger Points In Neck Could Cause Dizziness via Fibro Daze

by Fibro Daze:

What Are Trigger Points

In simple terms, a trigger point is a knot that forms in the muscle and sends pain to other areas of the body. Trigger points cause the muscle to become tighter and shorten. When muscles shorten, they cannot go through the full range of motion, altering the way you move, sit or stand. This leads to strength and flexibility issues, creating more trigger points.

Research suggests that fibromyalgia pain is largely due to myofascial trigger points. Therefore, treatment of trigger points will help manage the pain associated with fibromyalgia.

Trigger Points In Neck That Cause Dizziness

The trigger points in the neck that can cause dizziness form in the sternocleidomastoid (SCM) muscles. The SCM is a large muscle along the front on both sides to the neck. It is made up of two interconnected muscle bands. These muscle bands start out from the mastoid bone behind the ear. One band connects to the breastbone (sternum) and the other connects to the collarbone (clavicle). The sternal band lies on top of the clavicle band.

The primary functions of the SCM muscles are to turn the head from side to side and flex the head downward. The sternocleidomastoids also help maintain a stable position of the head during other body movements. Any position where the neck is held in an awkward position can create trigger points.

Another function of the SCM muscle is to raise the breastbone when you inhale. The muscle can become overworked if you breathe with the chest, rather than with the diaphragm. The SCM also assists with chewing and swallowing.

Symptoms Of Sternocleidomastoid Trigger Points

The effects of sternocleidomastoid trigger points can be amazingly widespread. Symptoms created by SCM trigger points include:

dizziness, vertigo and imbalance

blurred vision, double vision, excessive tearing, reddening of the eyes, drooping eyelid and twitching of the eye

hearing loss, tinnitus (ringing, roaring or buzzing in the ears)

migraine headache, sinus headache

nausea

sinus congestion or sinus drainage

chronic cough, sore throat

stiff neck

cold sweat on the forehead

continual hay fever or cold symptoms

trouble swallowing

What Causes Sternocleidomastoid Trigger Points?

Trigger points can be created by postures that keep the SCM contracted to hold the head in position -for example, looking at a computer screen or driving. Keeping your head turned to one side or holding your head back to look up for extended periods of time, are sure to cause problems. Breathing from the chest instead of the belly can also overwork the SCM muscle.

Here is a list of activities that might create SCM trigger points:

  • Overhead activities
  • Keeping your head turned to one side
  • Forward head posture
  • Holding phone with shoulder
  • Stomach sleeping
  • Heavy lifting
  • Falls and whiplash
  • A short leg or scoliosis or awkward posture
  • Stress and muscle tension
  • Chronic cough or asthma
  • Chest breathing

Sternocleidomastoid Trigger Point Release

SCM trigger points are easily self-treated. The SCM muscle group can contain seven trigger points. The sternal division typically has 3-4 trigger points spaced out along its length, while the clavicle division has 2-3 trigger points.

NEVER massage a pulse. If you pinch the sternocleidomastoid, rather than press it against the side of the neck, you will stay off the arteries.

Follow these steps to release the SCM trigger points:

  1. While looking in a mirror turn your head to one side. You will see the sternal branch.
  2. Grasp the muscle with your thumb and fingers curled into a C shape and turn your head back to face the mirror.
  3. Keeping your face looking forward, tilt your head slightly down and to the same side you are massaging.
  4. Press only hard enough that it feel comfortable and try to discriminate between the two branches. Each branch is about as big as your index finger. If you pay close attention, you should be able to feel them separately.
  5. Milk the muscle with short repeated up and down strokes, start in the middle and work your way up to behind your ear and then all the way down to the collarbone.
  6. If you find a spot that hurts, gently pinch the trigger point. Reduce the pressure until you don’t feel any pain. Once you’re below the pain threshold, slowly increase the pressure over 60-90 seconds.

Do this on both sides, a couple of times a day. Just go easy at first, and work at a pressure level that feels good for you. For a visual demonstration, you can watch the video and learn more at the original post, linked below.

via Trigger Points In Neck Cause Dizziness ».

A Book for Moms With Chronic Pain and Chronic Illnesses!

I know I haven’t been around in a while and I’m very sorry, life has been so crazy and my typing and thought process so poor that I’ve been taking an unintentionally long break. I have been writing every now and again, but mostly on Tumblr and Instagram, and sometimes for images I make in photoshop. Maybe I should post all those soon? I have also written about thirty drafts on WordPress that have been eaten, gone unfinished at the last minute, or that I am too embarrassed to post right now (and maybe ever). I will get back into the swing of things slowly but surely in the next month.

But, for now, I was stumbling through Amazon, and found this book and it just about made me burst into tears. I want kids so badly but because of EDS pregnancy dangers, my family history of Spina Bifida occulta and neural tube defects, the strong possibility that I have the MTHFR gene mutation, and a bunch of other factors, including a total phobia of doctors (I can’t even get into that on here or I will freak out and lose my relative calm for how much pain I am in and the fact that it’s 3:30am).

Though I want children desperately, what I really want and desire above a biological child is to adopt. I’ve always wanted to adopt. There will always be kids out there right now who need families. It seems so against my values to selfishly have a child via birth when I know there is little chance that child will not suffer like I do, and when I know that my ability to be a good parent to a very young child is never going to be strong enough. The thing is, I have a lot of love to give and knowledge to share, if not a lot of physical ability. Unfortunately, I will still struggle with very basic mom things, like shopping for clothes, or food for that matter, or taking them places at all, and cleaning isn’t getting any easier or more feasible lately though I try really hard. I’ve always wanted to be the perfect mom, but I think a large part of chronic illness is accepting that even healthy people don’t live up to that, therefore I certainly won’t.

I will be a good mom, I think, but I will have to work really freaking hard at it, and it will take everything that I have to give and more. Even if I do adopt a child, I am worried that I will feel like a failure as a mom no matter how much I try to cut myself slack for what I can’t control.

Seeing this book helped me a little. Knowing others are struggling with this, and that enough people even to sell a book about it.

Has anyone actually read this to their kids or bought it for themselves/future reasons? I hope there are more books like this out there by the time I am able to foster or adopt.

Why Does Mommy Hurt? by Elizabeth M. Christy

Why Does Mommy Hurt?: Helping Children Cope with the Challenges of Having a Caregiver with Chronic Pain, Fibromyalgia, or Autoimmune Disease

Ehlers-Danlos Syndrome Hypermobility Type: A Genetic Predisposition to the Development of Various Functional Somatic Syndromes | The Pain Relief Foundation

What follows is a truly fascinating look at why so many Ehler-Danlos Syndrome patients (especially Hypermobility Type, also used to be called EDS-III or Type 3), including myself, languish in pain, not taken seriously, waiting for a correct diagnosis. I accurately fit every requirement for EDS and was born with bilateral hip dislocations, a hole in my heart, and Spina Bifida Occulta affecting both my lower spine in a visible dimple and then at the area where the disc C2-3 should be I have instead two fused vertebrae not caused by injury or surgery. Those same physical therapists and radiologists have told me that I have craniocervical instability, but the PT couldn’t do much about it except help me find exercises that were somewhat safe for my neck.

In a slow car accident involving a semi truck with three trailers hitting my car on my way to work, I sustained two fully torn vertebral discs, and at least four other bulging/slipped discs. That much damage from a car accident that didn’t even total my used vehicle? Totally a give-away for Ehler Danlos Syndrome. I know that Spina Bifida is somewhat more common in EDS families, but I don’t know if there has every been an official link acknowledged between the two, although being born C-section with dislocated hips should be a pretty good indication that I had faulty joints. It’s crazy that my doctors continue to ignore my pleas for a solid EDS diagnosis even though I fulfill the Beighton and Brighton scales/scores on every move, and even though as a child I was known in my gym as “rubberband girl”. That was in comparison to all the other ages of girls there too, some of whom competed and did very well, but were never as flexible as me. I injured myself too many times and healed too slowly to keep it up into puberty . Isn’t that almost the same story of every person with EDS who participated in rigorous and physically demanding sports not knowing they had a collagen problem?

Further proof comes from my mom’s knee cartilage disintegrating in one night of dancing, according to her, and never being the same afterwards. Also the way we scar, and the hormonal imbalance most of us have. All the hip problems, bowel problems, arthritis and vascular issues that run in my family? Probably tied in to EDS genes, is my best guess, and those are all definitely areas of the body affected by collagen or lack thereof. All areas of the body are affected by collagen production. The craziest part is that I have instead been called a liar, been misdiagnosed several times and then called a liar again, which I pushed through only to be assigned many of these so called “wastebasket diseases” for which there is no real standard of care that works for all or even most patients. I know, horrible, horrible name, “wastebasket disease” and it sucks to be in that category because many doctors actually treat you like trash. At the best they mean well but have no idea how to help you significantly.

I don’t know why I have been diagnosed with JHS since my birth, back when it was known as Benign Hypermobility Syndrome (benign, my ass), but in texts now JHS and EDS-HT are medically acknowledged to be the same disease with the exact same treatment recommendations except that with the diagnosis of EDS my doctors may understand why tiny doses of opiates have never and will never cut it. I’m so opposed to any kind of surgery until they understand if I require more anesthetic during surgery than a non-EDS patient.

When I was young and injured myself pretty much once a month, doctors would look at my bones on x-ray film and say that they looked like the bones of a much older person but that I should be fine because I have bigger bones and that should help protect me. I’m not fine, doctors! Help!!! Send me a time machine or at least a geneticist who will take me seriously! I have already lost so much mobility and flexibility, and my spine is so harshly curved now in two places that it is starting to be difficult to get dressed, my fingers get stiff and spasm a lot more, as well as dislocate with the slightest of tasks, even typing. It’s not super painful unless they dislocate in a specific way. There are places it’s happened so many times I don’t notice it except when the joints get stuck and won’t move, like my knees for instance!

The studies that have been done recently say that 90% or more of all EDS sufferers have no idea what is wrong with them, or they know but can’t see a geneticist to confirm, due to lack of clear diagnostic criteria and no clearly defined specialists who commonly deal with the genetic condition. Then there is the often prohibitive cost of genetic testing. I can see why so many of us get left to rot. And there are probably a good deal of high functioning EDSers out there who weren’t dancers or gymnasts and who didn’t abuse their bodies as much as I did, and their life will likely be normal enough that if they learn of it, it will be because of having a child who has EDS, more than likely. I want to find out before that!!! That abundance of undiagnosed EDSers living with the disease seems backed up by all the patient populations they examined in the below article. The high occurrence of fibromyalgia alongside EDS-HT (around 50% of the fibro patients had EDS markers, and around half of the studied EDS population were found to have all key fibromyalgia symptoms) makes perfect sense as outlined by the last reblog I did from EDS InfoThat post deals with the fact that Untreated Chronic Pain is a Medical Emergency, where chronic pain states are explained as often arising from untreated acute pain after trauma, which is totally true in my case. I was too young to be in real pain, because that’s a thing, and my car accident wasn’t impressive enough that I merited correct dosage of narcotics, and I was shamed into not asking for them as often as I needed them.

Anyhoo, rant aside, the article is an elegant, and unique, explanation of so much that is difficult about navigating in the world of chronic illnesses and differential diagnoses.

Ehlers-Danlos Syndrome Hypermobility Type: A Genetic Predisposition to the Development of Various Functional Somatic Syndromes

Introduction

Functional Somatic Syndromes, conditions characterized by functional disability and self reported symptoms rather than clearly demonstrable organic problems, are a common contemporary health issue [1]. Each medical subspecialty seems to have at least one somatic syndrome for patients whose symptoms cannot otherwise be medically explained. These include: irritable bowel syndrome (gastroenterology); fibromyalgia (rheumatology); tension headaches (neurology); and chronic fatigue syndrome (immunology) [2]. In recent years, however, a significant portion of these patients have gone on to receive a diagnoses of a little known connective tissue disorder: Ehlers-Danlos syndrome hypermobility type (EDS-HT), formerly type III [3]. In this literature review, I will discuss the features of EDS-HT, explore EDS-HT as a possible unifying concept for various functional somatic syndromes, illuminate further implications of the described findings, outline a set of diagnostic criteria that should be implemented by healthcare professionals in functional diagnostic medicine, and propose a novel way of thinking about functional somatic syndromes.

Ehlers-Danlos Hypermobility Type (EDS-HT) Overview

 EDS-HT, considered to be one and the same with joint hypermobility syndrome (JHS), is a relatively common, frequently underdiagnosed heritable condition which predisposes those afflicted to chronic, widespread musculoskeletal pain and a wide variety of articular and extra-articular features purportedly linked to constitutionally abnormal collagen. The diagnosis is primarily clinical in essence and is largely based on the Beighton score (a simple system used to quantify joint laxity and hypermobility) and medical history. It is predominantly of autosomal dominant inheritance, though the molecular basis of EDS-HT is still largely unknown except for a minority of patients mutated in TNXB and COL3A1 [4]. Skin biopsies may show alterations in collagen fibril morphology [5]. Early literature fixed the frequency of EDS as a whole to 1 in 5000, with EDS-HT accounting for approximately half of all registered cases. However, due to it’s vast underdiagnosis, a presumed frequency of 0.75-2% has been proposed for EDS-HT [4].

Hypermobility and the Autonomic Nervous System:

The Missing Link for Various Functional Somatic Syndromes

When first described, EDS-HT was considered to be a relatively benign condition, with acute and chronic joint instabilities as it’s unique clinical consequence. Recently, however, accumulated experience on the management of EDS-HT patients elucidated a more complex clinical picture. In particular, subjects with joint hypermobility appear to be more prone to developing a range of functional somatic syndromes [3], including fibromyalgia [6], chronic fatigue syndrome [7], headaches [8], complex regional pain syndrome [10], gastrointestinal functional disorder [11], pelvic organ prolapse [12], and orthostatic intolerance [13].

An underlying dysautonomic process may explain many of the aforementioned functional somatic syndromes seen in EDS-HT individuals, which are present in practically all major body systems. Leading research suggests that the pathogenic relationship between dysautonomia and congenital laxity of the connective tissue is primarily attributable to the pathological deformation of the brainstem and upper spinal cord from occipitoatlantoaxial hypermobility and cranial settling [8]. In other words, craniocervical hypermobility and instability, and the resulting deformative stress of repetitive stretching and ventral brainstem compression, appear to underlie the observed autonomic dysfunction in hypermobile patients [9]. As demonstrated in pathological reports of fatal cases of traumatic brain injury and numerous animal studies, repetitive stretching of nerves can lead to clumping and loss of neurofilaments and microtubules within the axon and promotes neural apoptosis [14][15]. Strain also alters the electrochemistry of the nerve by decreasing the amplitude of action potentials [16] and increasing calcium influx into the cell [17]. When you apply this research to the context of hypermobile individuals, the underlying process of autonomic nervous system dysfunction becomes palpable. Unsurprisingly, the histopathological changes in neural axons that are undergone in these situations would not show up on any routine diagnostic test. In extreme cases, however, cranial settling and a reduction of the clivo-axial angle may be demonstrable on MRIs, but typically only when imaged in the upright position [8]. This would explain why many of these patients’ diagnostic imaging reports state negative results.

In accord with craniocervical hypermobility findings, recent studies have suggested that up to 70% of patients with hypermobility have orthostatic intolerance and other forms of dysautonomia. The orthostatic effect in EDS-HT individuals may also be compounded by abnormal connective tissue in the vasculature, which results in an increase in blood vessel distensibility in response to the augmented hydrostatic pressure that occurs during orthostatic stress. This leads to exaggerated blood pooling in the lower extremities with a resultant tachycardia [18]. While these findings were predictable, a reversed frequency study, wherein hypermobility was measured in patients diagnosed with Postural Orthostatic Tachycardia Syndrome, a prevalent form of dysautonomia in young people, found that an extraordinary 53% of participants met the diagnostic criteria for EDS-HT [19]. Furthermore, when hypermobility was measured in individuals diagnosed with Chronic Fatigue Syndrome, a condition with a longstanding, established association with orthostatic intolerance [20], researchers found that 25% of Chronic Fatigue syndrome sufferers had generalized hypermobility [21]. This phenomena, though, is likely of multifactorial consequence, as dysautonomia, chronic pain, and sleep apnea secondary to ventral brainstem compression can result in poor sleep architecture and chronic fatigue [22][23][24].

Ehlers-Danlos Syndrome Hypermobility Type as a Systemic Condition

 The autonomic nervous system problems associated with hypermobility, alike various functional somatic disorders, are present in practically all major body systems. In the realm of gastroenterology, for instance, dysautonomia in the form of vagus nerve damage (which may result from craniocervical instability) can result in delayed gastric emptying [25] and affect bowel contractibility, causing nausea and the so called “irritable bowl syndrome” [26]. Moreover, the underlying collagen abnormality of EDS-HT itself is systemic. Insufficient collagen may reduce sphincter tone and increase distensibility of the gut wall (which is likely to influence the function of surrounding cellular mechano-receptors), resulting in decreased gastrointestinal motility, gastroesophageal reflux (GERD) and/or irritable bowel syndrome (IBS). In fact, over 50% of EDS-HT individuals have GERD and/or IBS [4][27]. When hypermobility was tested in patients diagnosed with functional gastrointestinal disorders (which include IBS, functional dyspepsia, and functional constipation), an astonishing 49% were found to have joint hypermobility and many of those patients went on to receive an official diagnosis of EDS-HT [10].

When it comes to neurological manifestations, headaches are among the most common complaint in the EDS-HT population [4]. As a consequence of occipitoatlantoaxial hypermobility, drooping of the cerebellar tonsils and obstruction of the cerebrospinal flow at the craniocervical junction can result in intracranial pressure [8][28]. In addition, rapid fluctuations in blood pressure and inadequate cerebral perfusion on upright posture caused by dysautonomia may lead to migraines [29][30]. People with lax joints are also predisposed to cervicogenic, tension, and new daily persistent headaches arising from musculoskeletal dysfunction in the temporal mandibular joints and the upper three cervical segments of the spine [4][31].

As a consequence of ligamentous laxity, rheumatological complications among the EDS-HT population are commonplace. Chronic pain in patients with joint hypermobility stems from a predisposition to injury from daily minor trauma to the joints and ligaments [32]. Unstable joints may also lead to frequent dislocations, subluxations, sprains, and stretch injury to the nerves traversing hypermobile joints, further increasing the risk of developing chronic pain states such as arthralgia, repetitive strain injuries, and complex regional pain syndrome [4][9][33]. There is also a high incidence of muscular pain attributable to myofacial spasms. Tender points consistent with fibromyalgia are often palpable, especially in the paravertebral musculature [34]. In frequency studies, the prevalence of fibromyalgia in EDS-HT participants was established to be 30% [35] and the prevalence of EDS-HT among fibromyalgia subjects was found to be 27.3% [6]. One theory for the origin of pain in fibromyalgia ascribes it to excessive muscle stress, which may increase the excitability of nociceptive ends of the muscle [36][37]. Joint instability in hyperlax individuals may result in sustained muscle stress (an overcompensation mechanism for loose and injured joints) and over stimulation of nociceptive nerve endings (which are poorly supported by defective collagen fibrils) [38]. An alternative, although equivocal, theory has suggested that biomechanical disturbances in the cervical spine may play a role in the pathogenesis of fibromyalgia. In a controlled study of 161 cases of traumatic injury to the cervical spine (primarily “whiplash”), fibromyalgia was diagnosed in 21.6% of those with neck injury verses 1.7% control subjects with lower extremity fractures [39], bringing us back to the notion that craniocervical instability, and the subsequent neurological damage, may be the underlying process in the development of functional somatic syndromes.

Further Implications of Discussed Findings in the Diagnosis and Management of Functional Somatic Syndromes

 These observations suggest that a careful examination for hypermobility and connective tissue abnormalities should be an integral part of functional diagnostic medicine. Pathological deformation of the brainstem and stretch injury to neural axons due to an underlying congenital ligamentous laxity, as discussed here in the case of EDS-HT, or acquired ligamentous instability, such as whiplash, may indeed be the missing link in the pathogenesis of various functional somatic syndromes.

In a literature review of functional somatic syndromes, Wessely and colleges concluded, “a substantial overlap exists between the individual syndromes and that the similarities between them outweigh the differences” and “patients with one syndrome frequently meet diagnostic criteria for another” [40]. For this subset of patients, generalized joint hypermobility may represent the common milieu for functional somatic syndromes with ubiquitous manifestations. The predispositions EDS-HT imposes would further explain why many of these patients are affected profoundly by emotional arousal (as it’s mediated by the autonomic nervous system) and muscle tension, and why patients with different syndromes share non-symptom characteristics such as sex (as joint laxity is more pronounced in females) and develops at a relatively young age (as EDS-HT is heritable, and hence, lifelong) [4][41].

Accordingly, articular hypermobility can be assessed by using the 9-point Beighton score, which assigns one point for each side of the body on which the patient can (1) passively dorsiflex the 5th finger >90 degrees with the forearm flat on the table, (2) passively appose the thumb to the flexor aspect of the forearm, (3) hyperextend the elbow beyond 10 degrees, and (4) hyperextend the knee beyond 10 degrees and one point for forward flexion of the trunk with the legs straight so that the palms rest flat on the floor. If a patient receives a Beighton score of 4 or more, a referral to a geneticist or rheumatologist for further evaluation is recommended [42]. If cranial settling and a reduction in the clivo-axial angle is suspected, and upright MRI may additionally aid in diagnosis [8].

With this hitherto unobserved connection comes a new line of treatment for a subdivision of patients with functional somatic disorders. Physical therapy, in the form of exercises that strengthen joint-supporting muscles, and bracing may provide joint stability and help minimize articular injury [4]. Elimination of brainstem deformation by straightening and stabilizing the craniocervical junction (via fusion surgery) may also improve pain, neural functioning, and quality of life [8].

Conclusion: A Paradigm Shift in the Etiology of Functional Somatic Syndromes

Disorders that lack “objective markers” are usually considered to be functional, not “organic.” This implies to some that the symptoms in functional somatic syndromes are physiological manifestations of psychosocial factors, a view that enforces an insular attitude to the etiology of disease rather than an interactive holistic approach. Consequently, when investigative results are negative, management is commonly limited to reassurance about the (apparent) absence of disease and occasionally psychiatric therapy. These treatments, however, are unpopular with patients, have low coherence rates, and seldom provide long-term therapeutic relief [41][43].

An alternative explanation is that the organic abnormalities are undetectable through cursory diagnostic testing as the underlying mechanism may be histopathological in origin, or, as seen in the case of upright MRIs on EDS-HT patients, the body may not be in the problematic position when testing takes place. The overly common cognitive error overshadowing high-tech medicine –that emotional issues are the underpinnings of illnesses lacking objectivity– must be overcome. While it is sufficient to say that, like virtually all known illnesses, psychosocial factors do play some role in functional somatic syndromes [1], an over emphasis on medically unexplained symptoms as being psychological bases causal reasoning on a negative. An absence of evidence does not denote an absence of organic disease –it simply means that the conditions that were tested for are not present in the individual and there is an infinite realm of alternative possibilities, such as EDS-HT.

Functional somatic disorders can only be successfully managed in the healthcare setting once a comprehensive understanding of their nature and treatment is acquired. The recognition of Ehlers-Danlos Syndrome Hypermobility type, and other disorders involving ligamentous laxity, as a possible physiological mechanism underlying various medically unexplained symptoms will help bridge the gap in physicians’ minds between described physical complaints and apparent negative test results in a subset of patients. Henceforth, in the wake of this disclosed correlation, further investigation into the role hypermobility and connective tissue abnormalities play in the etiology of these conditions, alongside a redefinition and modification of the diagnostic criteria of functional somatic syndromes, is essential to study of medically unexplained phenomena.

via Ehlers-Danlos Syndrome Hypermobility Type: A Genetic Predisposition to the Development of Various Functional Somatic Syndromes | The Pain Relief Foundation.

Why Untreated Chronic Pain is a Medical Emergency | EDS Info (Ehlers-Danlos Syndrome)

the above image is from Chronic Illness Cat and the below article is taken from EDS Info, a wonderfully informative blog for any chronic pain sufferer, which you should all go check out and bookmark and return to often.

Why Untreated Chronic Pain is a Medical Emergency

Alex DeLuca, M.D., FASAM, MPH;Written testimony submitted to the Senate Subcommittee on Crime and Drugs regarding the “Gen Rx: Abuse of Prescription and OTC Drugs” hearing; 2008–03–08.

UNTREATED CHRONIC PAIN IS ACUTE PAIN

The physiological changes associated with acute pain, and their intimate neurological relationship with brain centers controlling emotion, and the evolutionary purpose of these normal bodily responses, are classically understood as the “Fight or Flight” reaction,

When these adaptive physiologic responses outlive their usefulness the fight or flight response becomes pathological, leading to chronic cardiovascular stress, hyperglycemia which both predisposes to and worsens diabetes, splanchnic vasoconstriction leading to impaired digestive function and potentially to catastrophic consequences such as mesenteric insufficiency. 

Unrelieved pain can be accurately thought of as the “universal complicator” which worsens all co-existing medical or psychiatric problems through the stress mechanisms reviewed above, and by inducing cognitive and behavioral changes in the sufferer that can interfere with obtaining needed medical care

Dr. Daniel Carr, director of the New England Medical Center, put it this way:

Chronic pain is like water damage to a house – if it goes on long enough, the house collapses,” [sighs Dr. Carr] “By the time most patients make their way to a pain clinic, it’s very late. What the majority of doctors see in a chronic-pain patient is an overwhelming, off-putting ruin: a ruined body and a ruined life.”

Dr. Carr is exactly right, and the relentless presence of pain has more than immediate effects. The duration of pain, especially when never interrupted by truly pain-free times, creates a cumulative impact on our lives.

CONSEQUENCES OF UNTREATED AND INADEQUATELY-TREATED PAIN

we must also consider often profound decrements in family and occupational functioning, and iatrogenic morbidity consequent to the very common mis-identification of pain patient as drug seeker.

The overall deleterious effect of chronic pain on an individual’s existence and outlook is so overwhelming that it cannot be overstated. The risk of death by suicide is more than doubled in chronic pain patients, relative to national rates.

What happens to patients denied needed pharmacological pain relief is well documented. For example, morbidity and mortality resulting from the high incidence of moderate to severe postoperative pain continues to be a major problem despite an array of available advanced analgesic technology

Patients who received less than 10 mg of parenteral morphine sulfate equivalents per day were more likely to develop delirium than patients who received more analgesia (RR 5.4, 95% CI 2.4–12.3)… Avoiding opioids or using very low doses of opioids increased the risk of delirium. Cognitively intact patients with undertreated pain were nine times more likely to develop delirium than patients whose pain was adequately treated. Undertreated pain and inadequate analgesia appear to be risk factors for delirium in frail older adults. [7]

PAIN SUFFERERS ARE MEDICALLY DISCRIMINATED AGAINST

Chronic pain patients are routinely treated as a special class of patient, often with severely restricted liberties – prevented from consulting multiple physicians and using multiple pharmacies as they might please, for example, and in many cases have little say in what treatment modalities or which medications will be used. These are basic liberties unquestioned in a free society for every other class of sufferer

chronic pain patients are often seen by medical professionals primarily as prescription or medication problems, rather than as whole individuals who very often present an array of complex comorbid medical, psychological, and social problems

Instead these complex general medical patients are ‘cared for’ as if their primary and only medical problem was taking prescribed analgesic medication.

This attitude explains why most so-called Pain Treatment Centers have reshaped themselves into Addiction Treatment Centers.  Even with a documented cause for pain, the primary goal of these programs, whether stated or not, is to coerce patients to stop taking their pain medications.

This may work for a small number of pain patients who may not really need opioids in the first place, but is a “cruel and unusual” punishment for those of us with serious, documented, pain-causing illnesses.

The published success rate of these programs has nothing to do with pain – it is measured by how many people leave the program taking no pain medication, but there is no data about the aftermath, how many manage to stay off their medication long-term.

their obvious primary medical need is for medical stabilization, not knee-jerk detoxification

CHRONIC PAIN IS A LEGITIMATE MEDICAL DISEASE

Chronic pain is probably the most disabling, and most preventable, sequelae to untreated, and inadequately treated, severe pain.

Following a painful trauma or disease, chronicity of pain may develop in the absence of effective relief. A continuous flow of pain signals into the pain mediating pathways of the dorsal horn of the spinal cord alters those pathways through physiological processes known as central sensitization, and neuroplasticity. The end result is the disease of chronic pain in which a damaged nervous system becomes the pain source generator separated from whatever the initial pain source was.

Aggressive treatment of severe pain, capable of protecting these critical spinal pain tracts, is the standard care recommended in order to achieve satisfactory relief and prevention of intractable chronic pain

Medications represent the mainstay therapeutic approach to patients with acute or chronic pain syndromes… aimed at controlling the mechanisms of nociception, [the] complex biochemical activity [occurring] along and within the pain pathways of the peripheral and central nervous system (CNS)… Aggressive treatment of severe pain is recommended in order to achieve satisfactory relief and prevention of intractable chronic pain.

we are seeing ominous scientific evidence in modern imaging studies of a maladaptive and abnormal persistence of brain activity associated with loss of brain mass in the chronic pain population

Atrophy is most advanced in the areas of the brain that process pain and emotions. In a 2006 news article, a researcher into the pathophysiological effects of chronic pain on brain anatomy and cognitive/emotional functioning, explained:

This constant firing of neurons in these regions of the brain could cause permanent damage, Chialvo said. “We know when neurons fire too much they may change their connections with other neurons or even die because they can’t sustain high activity for so long,” he explained

It is well known that chronic pain can result in anxiety, depression and reduced quality of life

Recent evidence indicates that chronic pain is associated with a specific cognitive deficit,which may impact everyday behavior especially in risky, emotionally laden, situations.

The areas involved include the prefrontal cortex and the thalamus, the part of the brain especially involved with cognition and emotions

The magnitude of this decrease is equivalent to the gray matter volume lost in 10–20 years of normal aging. The decreased volume was related to pain duration, indicating a 1.3 cm3 loss of gray matter for every year of chronic pain

clinicians have used opioid preparations to good analgesic effect since recorded history.

No newer medications will ever be as thoroughly proven safe as opioids, which have been used and studied for generations.  We know exactly what side effects there are, and they are fewer than most new drugs, with less than a 5% chance of becoming addicted if taken for pain.

In fields of medicine involving controlled substances, especially addiction medicine and pain medicine, the doctor-patient relationship has become grossly distorted.

doctors-in-good-standing who, faced with a patient in pain and therefore at risk of triggering an investigation, modify their treatment in an attempt to avoid regulatory attention

Examples include a blanket refusal to prescribe controlled substances even when clearly indicated, or selecting less effective and more toxic non-controlled medications when a trial of opioid analgesics would be in the best interests of a particular patient. At the very least, some degree of suspicion and mistrust will surely arise in any medical relationship involving controlled substances.

the quality of care most physicians provide is fairly close to the medical standard of care which is what the textbooks say one should do, and which is generally in line with core medical ethical obligations

For example, modern pain management textbooks universally recommend ‘titration to effect’ (simplistically: gradually increasing the opioid dose until the pain is relieved or until untreatable side effects prevent further dosage increase) as the procedure by which one properly treats chronic pain with opioid medications. Yet the overwhelmingly physicians in America do not practice titration to effect, or anything even vaguely resembling it, for fear of becoming ‘high dose prescriber’ targets of federal or state law enforcement.

It is a foundation of medicine back to ancient times that a primary obligation of a physician is to relieve suffering. A physician also has a fiduciary duty to act in the best interests of the individual patient at all times, and that the interests of the patient are to be held above all others, including those of family or the state.[23] These ethical obligations incumbent on all individual physicians extend to state licensing and regulatory boards which are composed of physicians monitoring and regulating themselves. [24]

A number of barriers to effective pain relief have been identified and include:

  1. The failure of clinicians to identify pain relief as a priority in patient care;
  2. Fear of regulatory scrutiny of prescribing practices for opioid analgesics;
  3. The persistence of irrational beliefs and unsubstantiated fears about addiction, tolerance, dependence, and adverse side effects of opioid analgesics.

A rift has developed between the usual custom and practice standard of care (the medical community norm – what most reputable physicians do) and the reasonable physician standard of care (what the textbooks say to do – the medical standard of care), and this raises very serious and difficult dilemma for both individual physicians and medical board

Research into pathophysiology and natural history of chronic pain have dramatically altered our understanding of what chronic pain is, what causes it, and the changes in spinal cord and brain structure and function that mediate the disease process of chronic pain, which is generally progressive and neurodegenerative

This understanding explains many clinical observations in chronic pain patients, such as phantom limb syndrome, that the pain spreads to new areas of the body not involved in the initiating injury, and that it generally worsens if not aggressively treated. The progressive, neurodegenerational nature of chronic pain was recently shown in several imaging studies showing significant losses of neocortical grey matter in the prefrontal lobes and thalamus

Regarding the standard of care for pain management:

1) Delaying aggressive opioid therapy in favor of trying everything else first is not rational based on a modern, scientific understanding of the pathophysiology of chronic pain, and is therefore not the standard of care. Delaying opioid therapy could result in the disease of chronic pain.

2) Opioid titration to analgesic effect represents near ideal treatment for persistent pain, providing both quick relief of acute suffering and possible prevention of neurological damage known to underlie chronic pain.

Pain Relief Network(PRN); 2008–02–28; Revised: 2008–07–08. Typo’s and minor reformatting: 2014-04-14.

via Why Untreated Chronic Pain is a Medical Emergency | EDS Info (Ehlers-Danlos Syndrome).

hard to see a way out

7 Cups of Tea: Free Online Chat with an Active Listener or Therapist

Introducing the free mental health resource 7 Cups of Tea to anyone who hasn’t heard of them before.

If you need someone to talk to, any time, this is a great website to save in your favorites. All chats are anonymous, and you can either connect to the first available listener or find someone who fits your needs from their list of therapists and listeners.

7cupsoftea
 Free, anonymous, and confidential conversations. All sessions are deleted.

Stock-Image-Separator-GraphicsFairy11

10426108_324162374441586_795361327702660444_n

7 Cups of Tea is a safe, non-judgmental online space to talk it out with trained active listeners. You can even connect with a therapist or active listener whose specialties are of interest to you or your particular situation. There is also group support if that is more your style.

7 Cups also offers a set of thorough self help guides to consult, including self-help for chronic pain, as well as for anxiety, college life, and even one for entrepreneurs who are struggling with their start up companies. There are a wide variety of topics covered, you may be surprised to see a self-help guide for something you thought not that many people struggled with. They keep an expanding library of articles about specific mental health topics, such as this post on Mindfulness.

There is a lot to see on this website, and a lot to remind us about basic self-care during the tougher times in our lives. The self-help guides might seem repetitious for spoonies and those living with chronic pain, but our mind plays tricks on us when we are at our lowest, and the simplest of ways to practice self-compassion and healing slip through our fingers. That’s why it’s a useful website to bookmark and visit often, even when you’re not planning to chat with an active listener. I have added 7 Cups of Tea to my Chronic Illness Resources Page. Any online resource like this is just fabulous, and this is one of the best I have found. Plus, it’s FREE, and free is an awesome price. Especially for those of us who are prohibited from working by our illness or pain. Stock-Image-Separator-GraphicsFairy11

Volunteer Opportunity Alert:

If you’re looking for a volunteer opportunity that you can do any time from home, this may be perfect for you! They are always looking for new Active Listeners to train so that more people can receive one on one attention.

Click here to begin the sign up process

Stock-Image-Separator-GraphicsFairy11

Suggestions?

If anyone has any suggestions for self-help websites or free online therapy, please leave the URL below in a comment and it will be added to my Chronic Illness Resources Page.

So You Want to Date a Sick Person?

So You’re Healthy, and  You Want to Date a Sick Person?

Like, Really Date? Here’s what you need to know:

Millions of Americans suffer from chronic illnesses. Millions of young (<35) Americans suffer from chronic illnesses. And, millions of young Americans suffer from chronic, invisibleillnesses. I’m one of the third kind, and if you’re healthy, and want to be in a partnership with someone like me, this containssome of what you need to know.

1. Think about it. Are you sure?

If you said “yes” before beginning this sentence, the answer is actually “no”. For the good of all of us: if you enter into a relationship with us, you have to: 1) be sure you want it, and 2) ensure you’ve spent at least ten hours finding out about disability, and the illness(es) in question. You have to think about it. Are you going to be okay leaving something you really wanted to go to because they’re not feeling well? Are you going to be okay with many late night ER visits? Do you understand that they may never be able to, or want to have, kids? And, it’s on us (hear that, sick people?) to try to explain what it’s like to be the partner of a sick person. Hopefully I can do some of that work here.

*That said, take forums made for disabled people with a grain of salt, because they’re generally not representative of what daily life would actually feel like

2. Try to understand, and to really understand. But most importantly, internalize that you probably never will be able to.

We have to deal with a lot of well-meaning but misdirected “advice” every day. Some of us hate it less than others, and some days no matter how little it bugs us it will probably send us into a tailspin. Understanding that we are having an experience entirely foreign from the one you live is the best way to minimize advice coming from you.

Some things we do don’t make sense, and we can’t communicate it to you. Why is it that I can lift a box, but not wash off a fork? I don’t know how to explain it, but that doesn’t make it any less true! Also remember: “Third party perspective” is an invaluable resource, for any relationship. If you’re going to be in the relationship, it may be good to find a few other people who are also SOs of people with invisible disabilities.

3. We will always be highly variable, and occasionally inexplicably variable.

Some days, we feel good enough to make plans. Occasionally, they are ambitious plans. However, that does not mean that that should form an expectation. If I say that tomorrow I want to do research on how to start that company I had been thinking about for ages, and tomorrow comes, and I’m not doing it immediately, it’s not because I don’t want to start that company. It’s because Ican’t. And yes, believe me, I know I said tomorrow I would do that.

But here’s the thing: we don’t have any idea what tomorrow will look like. Sometimes tomorrow looks like a warm breezy September day. Other days, tomorrow we wake up and the first thought we have is “Wow, I actually feel like I’m going to die.”

4. Understand that one of the biggest hurdles is that we do not look like we are sick.

Even to ourselves! If I look healthy, society expects me to act healthy, you expect me to act somewhat healthy, and worst of all, I expect me to act healthy. I feel like I should be able to do all the things that normal 20-somethings do, except that doesn’t happen, because impossible things generally don’t happen. Cue me feeling guilty, and blaming myself. And no one else understands, because I don’t look sick, and because, why would anyone ever complain about not being able togain weight?

5. Don’t judge us for how we medicate.

Do you have any idea how long it takes to get into some of the specialists we need to see? Months and months. If my body is breaking, and it’s going to takemonths for me to see someone who may even have a possibility of starting to fix it, you bet your ass I am going to be forced to self-medicate. Yes, even the “scary” medications. Let’s take opiates. Sick people are not addicted to opiates. Sick people take opiates to be able to function. Every sick person I know has been able to stop opiates cold turkey no problem after they’ve finished a round of needing them. But guess what? When you need them, you fucking need them.

Accept that you don’t know what it’s like. And, accept that the stereotypes don’t apply in this instance. We’re not doing it to be “doped up” or forget our problems. We’re doing it because although we acutely know what our problems are and would take a good doctor’s appointment over vicodin in a HEARTBEAT, we also know that that appointment is a long way off, and we need to not be incapacitated. I’ll let you in on a secret: it’s kind of like a competition within ourselves to see how long we can go without taking something that will make us feel better. Today I cried because I felt like a failure for needing pain medication.

Also realize that things do not work the same way in our bodies or our brains. Normally, I am extraordinarily uncoordinated, and fall often (without reflexes). When I’ve had sedatives, I become not just graceful, but exceptionally clear-headed compared to before. Brain fog: it’s a thing, it comes from pain.

6. Don’t have your primary desire be as a caretaker.

Some of us want partners. Of those that want partners, sometimes we will want to be taken care of. But, regardless of if we want you to be our caretaker, it is not a good idea to start a relationship with one person’s primary role acting as caretaker. The difference between taking care of and being a caretaker is enormous. Self-sufficiency is important, and it’s a skill we all have to learn. Sometimes, we will need help, and we will call you. But dependency is easy to fall into and hard to get out of, and it will destroy your relationship.

7. Sometimes us being sick will suck, a lot, for you too.

Sometimes we will be on medications that change our personality. If we’re on steroids, we’re probably going to be cranky. Some of us have Raynaud’s, partial seizures, vagus nerve dysfunction, adrenal dysfunction, and other conditions which can make us temporarily moody.  Most of us don’t sleep well. Most of us have a hard time with food.

If you’re lucky, you’ll be dating one of the kind that is pharmacologically self-aware, and they will be able to tell that something is making them some way other than normal, and try to fix it. Unfortunately, some of us don’t know when we are acting differently, which is compounded by the fact that most of us have so many possible explanations for everything that it would be very difficult to find the culprit. And sometimes, we can’t change it at that moment. You don’t take steroids unless you need them. It’s also pretty hard to balance your hormones.

8. No sympathy. Empathy, but never sympathy.

Do not ever fall into the trap of what I like to call the “adversity inferiority complex”. This is when you compare my problems with yours, decide that yours are less worthy, and hold them in. This is a recipe for disaster. Partly because it breeds resentment, and partly because it’s actually a lot easier for us to help others with their problems than to always focus on our own. So a lot of the time, we will be happy to help you, even (and maybe especially) if we are feeling shitty, because then we have something else to focus on. Also because if you truly want a relationship, the only way you’re going to be able to have one is to go through things together. And trust me: we want to hear about your struggles.

It should be established that if we’ve hit a major threshold and just can’t, then maybe there can be a safe word that means “I really can’t right now, but I want to very much, can we schedule a time to talk later?”

9. Talk with us.

Talk with us about it a lot, and take time making this decision. Because if you do, it requires a lot of trust from us. And as a sick person, Trust is both the scariest thing to give out, and is a finite resource.

10. Most of the time, when you think we’re mad at you

We’re worried you’re going to leave, because we’re sick.

Despite all of this

Most of the time it will be like being in a normal relationship with any two people who like each other. Every relationship has hurdles. These will be some of them. That doesn’t mean that most of the time, you will even be aware we are sick. But, these are things you need to know for those times.

yesireallyamsick, dating, disability, chronic illness, mental illness, physical illnessinvisible illness, medication

Stock-Image-Separator-GraphicsFairy11

My Response to YesIReallyAmSick on Tumblr:

The author totally hits the nail on the head, especially the last part about when we seem angry. I was with my boyfriend for years, actually planning a future as his caretaker (he had been told he needed major hip surgeries spanning a few years of total recovery time), before my car was hit by a semi truck on my way to work. After my initial 50% recovery in the first six months or so, slowly I went downhill again, until I finally became too sick to work or ignore what was going on any longer. Our story is a little different in that we were both healthy when we started dating and living together, and in the same year, we both had life-changing medical happenings, and not in the good way. Suddenly, my boyfriend and I found ourselves unable to work normal jobs or participate in life as much as we would like. Young, sick, and in love. How hollywood. Except it is nothing like a movie.

The relaionship started out so classic; chubby goth nerd girl dates tall former football player. I fell in love right away, and told him so, but it took him another year to decide he wanted me too. We never dated like regular people, even then. We hung out in our apartments with friends and at friends’ apartments, we cooked eachother food and drove around the city aimlessly, because we were too broke to go to bars, and we didn’t ever do the dinner and a movie thing. We have spent every single night together since the first night, except for one this last year in which I slept at home while my boyfriend was in the hospital overnight after a surgery. Our first date was five months into our relationship, just before we moved in together. It was a camping trip, our first together but one of many to come. I think I surprised him by actually knowing how to throw a baseball. And by how much I wanted to hike, explore, and never go home. Things are so different now, and it almost hurts to recall the person I once was.

I worry about the toll it takes on him to be picking up my prescriptions now, taking me to appointments because I have lost the ability to do so myself, remembering what I cannot remember while I am talking to my doctors, and most of all seeing me in pain and miserable and not being able to fix it like he fixes everything broken. For his sake, I wish I did not have this long list of medical problems, but for my sake I am somewhat grateful that I do, something I cannot explain fully in this post, but which I try to convey through most of my other writings.

The major downside to falling for someone while living with a chronic illness is that it is heartbreaking to know I place limitations and higher-than-reasonable expectations on the love of my life. He is going back to school since he cannot work his old labor intensive jobs anymore, and we live off of his financial aid, which will have to be paid back eventually. It’s not a glamorous life, we are broke, broke, broke, and what money we come by goes towards medical supplies and prescriptions, for both of us, but mainly me. Money is a thing that unfortunately will limit our plans as well, because I am truly sick and I cannot just skip picking up my medicines, even though they sometimes come out to $800+ out of pocket in a month. This is not what I imagined. This is not what I planned for. This is not what I worked so hard for. But it is reality. And feeling sorry for myself is not my style.

Therefore, in our relationship I do not regret all that we have been through together. I know without a doubt that he loves me, that he will stick by me in sickness and health, and that I will do the same for him. Many couples do not have that bond, and again, I defer some level of gratitude to my illness.

The divorce rate for those with chronic illness is very, very depressing. It hangs around 75% of marriages. So many relationships destroyed by the difficulty of fulfilling the vows they exchanged: “In sickness and in health.” I hate those statistics. I hate that I am fighting those odds now too. But I love the man I am with, and I have seen him do whatever it takes to be with me, and he has seen me do the same for him. I have slept for a month on the couch while he healed from his surgery in a hospital bed in the living room, during a massive flare up. I did not struggle to make the decision to do so, because if he needed me I could not hear him if I slept in the bedroom, and at that point he needed me often. He has driven me an hour each way to appointments even while his hips are killing him. I have cheered him along while he chose a new career path and went back to school, and I have supported unquestioningly his need to take a few semesters off for grief and for surgeries. He has supported my difficult journey and allowed me to find my voice and my way again post-diagnoses, even when it meant getting fired from my job and beginning the terrifying process of applying for disability as a 20-something recovering workaholic.

To say that we are dating is a white lie. We are nesting, we are living together, we are committed, but we do not get to “date” each other like other couples do. We have not been out to eat in over a year, easily. Our frequent camping trips, which I always considered the most romantic dates of all, have become one night mini-adventures, which we both suffer from disproportionately and can only manage once or twice a year. Our long drives to nowhere to look at houses and gaze at scenic areas of Oregon have stopped. Our couples-daydreaming of a future on a farm have ceased. When we talk about having children of our own or adopting, our eyes hold bittersweet, cautious hope that we can still make real the dream of little ones, no matter what happens.

Our future is murkier now. Will I be able to carry a child to term? Will I be a good mother? If he needs more and more surgeries will I be able to care for him, and children, when I often can’t even care for myself? Will my condition ever allow me to bring in money again? Can I homeschool and make everything from scratch or is that ridiculous? Is there a way to minimize the impact my illnesses have on my lover and my theoretical future children, without compromising my treatment? Will I deteriorate further the older I get? Am I sure I can’t just snap my fingers and get rid of all these issues, go back to the way we were and the innocent daydreaming of a happy, hard-working, fulfilling life?

Yes. I am sure. But only because I have tried it a few thousand times to make certain.

happiness

I am just like you. I want to go hiking this summer, want to drive to the desert, or the coast, or the mountains spontaneously. I want to work hard and play harder. I long to have ordinary twenty-something nights; to once in a while get drunk with my old friends and run around downtown in the rain in heels, with no coat, until 4am. When the radio plays a song that stirs my soul, I get excited and daydream of concerts and dancing with abandon while all the hipsters stand there, swaying to the band with their hands in their pockets. If friends and family tell me about their relationship issues or financial struggles, even their aches and pains, I have a deep well of empathy and understanding no matter how bad I am feeling. When people tell me to buck up, pray harder, or stop trying to attract so much attention with my illnesses and injuries, I am furious. Wouldn’t you be angry if you had channeled your over-zealous work-ethic into trying literally everything to cure yourself, from conventional to the very odd? I have a right to be furious if people insinuate that I am lazy or not trying hard enough, or that I want attention, nevermind that I worked a year and a half past the point of spending most of my days sobbing or trying not to sob while working because I just hurt so much. I did not choose my broken body. Every small task feels like a marathon to me, but on the surface it’s not possible for most people to see how much I struggle with small daily activities that others take for granted.

I still have ups and downs in my moods that have nothing to do with being ill, but I also have moodswings that are out of my control, either from imbalances in chemicals in my body, or from medications I take. Talking to me with an open mind is the only way to find out which it is. Sometimes I don’t even know I am acting strangely.

Every day I have to ask myself if I can really allow the person I love so much to suffer along with me. I have to ask myself if he wouldn’t be better off finding a healthy girl who can bear him the children he so badly wants and take care of him like he deserves when he is hurting. Someone not so damaged would be great for him, right? But that is the voice of insecurity and it takes up real, vital energy to worry, and we are in love. That is all I need, I hope it all he needs too, I trust him to choose what is best for himself. The fact that he loves me and I love him holds the answers to my painful questions. I would so much rather focus on the love between us than the uncertainty the future holds. Unfortunately these thoughts and fears do resurface often or I would not be writing about them at all.

To be honest, I am often scared of losing the love of my life to sicknesses that I never wanted. I am scared because the man I love can get up and walk away. I cannot. I am stuck with it, with the late night ER visits and furtive internet research on my conditions. with medications that I hate taking, with horrible insomnia and a libido that disappeared completely, with support groups and symptom logging, with severe, non-stop pain that changes my personality and rewires my brain. I am bound by a very finite amount of energy each day and there are dire consequences for overstepping my energy envelope. I cannot opt out of this delicate balancing act (or disastrous mess, depending on the day), but my partner can. Yet, he chooses to be by my side.

The trust has to be immense between us to make it work in a long term sense. The communication has to be from a place of equality and respect, and it can never stop happening, or the relationship essentially shuts down too. We have very ordinary couple problems, as well as very specific troubles relating to illness, grief, disability, and pain. Our relationship has been through more than most sustain in a lifetime of marriage.

Talking about chronic illness and its effect on our relationships is hard, because love is vulnerable. There is so much at stake. There is a person we cannot bear to lose, or a potential to meet and fall in love with someone we cannot bear to lose, and our illness absolutely will impact that person negatively at times. That is not the stuff of the average happily-ever-after, but it is mine.

I do not regret the powerful sway that love has had over my life in the last six years of coupledom. His heart is something I would not trade for wealth, for wisdom, or even for wellness.

Still, I worry, because even the strongest relationship is not perfect, and I have added so much stress to our lives by becoming ill. Stress that just isn’t healthy for anyone. I care about and love my boyfriend deeply and do not want to be the one part of his life that holds him back from finding his own happiness. It is a delicate and complex balance to communicate with my partner enough, about the right things, while somehow not over-sharing all the time. I’m terrible at the balancing act between too much and not enough information right now, and that absolutely causes problems. That is just one tiny example of the difficulties of putting love into action while dealing with the cards dealt by chronic pain and illness.

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).

Artist Perfectly Illustrates How Different The World Looks With Social Anxiety

via Distractify | Artist Perfectly Illustrates How Different The World Looks With Social Anxiety.

I’ve gotta say, this gets it pretty damn right. Not to say I’m proud of that, just that the artist captured my unjustified complete terror at what for the average person are very ordinary events. And made me giggle, too. Enjoy!

Answering the Phone

Going Out to Eat

Running

Going to a Bar

Going to a Party

Coming Home

When it comes to explaining just how different the world is to a person with social anxiety issues, College Humor’s illustrator Shea Strauss has hit the proverbial nail on the head.

 

via Distractify | Artist Perfectly Illustrates How Different The World Looks With Social Anxiety.

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.

 

Awareness Ribbons Chart – Colors and Meanings of Awareness Ribbon Causes (From Disabled World)

Printable Awareness Ribbon Chart

via Awareness Ribbons Chart – Colors and Meanings of Awareness Ribbon Causes – Disabled World.

The website goes into much more detail, as well as noting extra conditions that are covered under each color/color combo. I’m thinking about doing all of the colors with each condition written on the ribbon in photoshop so that we can all save and post according ribbons if we want, without any confusion.

This search started, by the way, because a friend of mine from high school had posted a yellow ribbon as her facebook profile picture, and I wanted to know what cause she was representing, and the answer ranged from suicide awareness to bladder cancer to liver disease to supporting the troops. It wasn’t written on the ribbon, plus no clues were given via description, and that frustrates me. What’s the point if no one else knows what cause you are trying raise awareness for?

Anyhow, I will get around to that, but if illness interupts it could take some time. Hopefully I can make a resource page on this site where people can save a picture of the ribbon matching the condition(s) they have, to add to the bottom or sidebar of their page. And yes, when I do this, the first will be one for Chronic Pain all by itself, since many of us do not know why we are dealing with what we are dealing with, and many of will never know.

I might know a lot of you who fit into the “rare diseases” white ribbon, in which case, I want to make you a ribbon with your specific disease or condition or struggle, and you pick the color. Just drop me a comment, any time, either on this post or on the page I create later on. Post to come soon, hopefully with the first ten or so ribbons that are requested. I might do a poll on ribbon styling too…. it would be my first opportunity to use that option on WordPress!

Happy creative Saturday, friends ❤

I’m glad we all made it. This week felt like it just would not end, and I got next to nothing done. Hopefully this weekend I can shift gears, but I seem to be setting myself back with these big pushes when I get one slightly better day. Just so bored with this!!! I hate tv, so I’ve been trying to entertain myself other ways, and it’s hard! It’s only going to get harder when I ask my doctor for a heart rate monitor to keep track of my energy levels as best I can for a few months. Any time the damn thing beeps, I have to sit down. Doesn’t matter if I’m climbing the stairs, I gotta stop, sit down, record what time it is and what made it go off, and let my heart rate go back to a lower range. It sounds pretty frustrating, but who knows, it could provide me with some much-needed evidence-based data to share with my doctors, or it could provide me with just enough data to teach myself to live within my “energy envelope”. If you want to read more about heart rate monitoring and the logic behind it, check out these articles:

1. http://www.occupycfs.com/exercise-testing-and-results/

2. http://livewithcfs.blogspot.com/2011/02/heart-rate-and-post-exertional-crashes.html

3. http://www.cortjohnson.org/blog/2013/08/13/heart-rate-monitor-program-improves-heart-functioning-in-chronic-fatigue-syndrome-mecfs/

Distraction Therapy

Distraction Therapy and Art Therapy, rolled into one happy technique for doodling away the pain. I really do love this idea and immediately decided to go buy a few of these coloring books for adults!

This is one I sketched with pen and meticulously colored in with cheap watercolor pencils so as not to go insane while I was working at the Oregon Museum of Science and Industry, in the theater, in the dark, well before I had this kind of chronic pain or illness:

raindrops and ripples

I totally remember how calm I felt while I did this and think this might be a new favorite distraction technique. Big thanks to Moongazer for the wonderful idea and for sharing it with everyone!

 

Chaos, Cats and Chronic Pain

Distraction Therapy was first mentioned to me by an Occupational Therapist after my surgery but when I asked her for ideas (expecting her to have loads up her trained professional and experienced sleeve) she basically shrugged at me and googled ‘meditation’ o_O

So it is worth sharing snippets and suggestions amongst ourselves, methinks.

I find that sometimes, especially during a flare up of my FM, when the pain pills aren’t quite enough, sleep isn’t happening, and I am either too ‘foggy’ or bored or just plain restless for other things to occupy me – there is something I sometimes turn to as a distraction.

I have actually ummed and ahh’d a bit over posting about this, because I imagine there are people out there who might find this amusing, silly perhaps. But I saw another post about it the other week and decided Stuff it!! I will write about it.

View original post 384 more words

The Long Term Effects of Chronic Pain

Just another short and sweet, easy to print explanation of what even minor long-term untreated chronic pain can do to a person. A person without any other troubles or illnesses. Most of the issues discussed in this article are less life-ending types of chronic pain, but that just serves to further reinforce the point that any kind of pain if left untreated is unhealthy; it can trigger long-term issues with depression and anxiety, even rewire the brain, and can make it difficult to process even mildly disruptive daily events, such as bad traffic.

That is not nothing.

So many of us are in kinds of pain that are so far beyond this little pamphlet from a pain clinic, but the people around us often are not as aware of the little things that go awry when pain stays for too long and is not recognized and treated. I thought this was kind of a nice review for people who are new to thinking about or dealing with illnesses that involve never-ending agony.

Sorry, ignore me, I’m still not able to get this flare up under control, and it’s starting to scare me when I read about others who had their “Big One” in the onset years of their illness that lasted 6-12 months.

Do. Not. Want.

Even a good day is a fight for every positive thought; every scrap of willpower woven together so tightly just to do normal people tasks, inside my own home. On a good day.

Here’s the article:

The Long-Term Effects of Untreated Chronic Pain

Even minor pain, such as a stubbed toe or a paper cut, is unpleasant but that pain fades relatively quickly. Imagine being in pain that never fades, or that fades only to come back a few hours later. What would that do to a person? This is what people with chronic pain have to deal with every day.

Chronic pain, a diagnosis including arthritis, back pain, and recurring migraines, can have a profound effect on a person’s day to day life when it goes untreated. People dealing with ongoing or long-term pain can become irritable, short-tempered, and impatient, and with good reason. Constant pain raises the focus threshold for basic functioning, which leaves the pained person with a greatly reduced ability to find solutions or workarounds to even relatively mundane problems. Something like a traffic jam, which most people would be mildly annoyed by but ultimately take in stride, could seriously throw off the rhythm of someone who is putting forth so much effort just to get through the day.

After a while, pain wears a person down, draining their energy and sapping their motivation. They sometimes attempt to limit social contact in an effort to reduce stress and to decrease the amount of energy they have to spend reacting to their environment. Eventually, many people with chronic pain develop depression-like symptoms: lack of interpersonal interaction, difficulty concentrating on simple tasks, and the desire to simplify their life as much as possible, which often manifests as seeking isolation and quiet. Sleeping often makes the pain less intrusive, and that combined with the exhaustion that pain induces means that it isn’t uncommon for a person to start sleeping upwards of ten hours a day.

Some recent studies have also shown that chronic pain can actually affect a person’s brain chemistry and even change the wiring of the nervous system. Cells in the spinal cord and brain of a person with chronic pain, especially in the section of the brain that processes emotion, deteriorate more quickly than normal, exacerbating many of the depression-like symptoms. It becomes physically more difficult for people with chronic pain to process multiple things at once and react to ongoing changes in their environment, limiting their ability to focus even more. Sleep also becomes difficult, because the section of the brain that regulates sense-data also regulates the sleep cycle. This regulator becomes smaller from reacting to the pain, making falling asleep more difficult for people with chronic pain.

Untreated pain creates a downward spiral of chronic pain symptoms, so it is always best to treat pain early and avoid chronic pain. This is why multidisciplinary pain clinics should be involved for accurate diagnosis and effective intervention early in the course of a painful illness – as soon as the primary care provider runs out of options that they can do themselves such as physical therapy or medications. However, even if the effects of chronic pain have set in, effective interdisciplinary treatment may significantly reduce the consequences of pain in their lives. There are any number of common treatments, which include exercise, physical therapy, a balanced diet, and prescription pain medication. Ultimately, effective treatment depends on the individual person and the specific source of the pain. One thing is very clear, however: the earlier a person begins effective treatment, the less the pain will affect their day-to-day life.In addition to making some symptoms more profound, the change in brain chemistry can, create new ones, as well. The most pronounced of these are anxiety and depression. After enough recurring pain, the brain rewires itself to anticipate future bouts, which makes patients constantly wary and causes significant anxiety related to pain. Because chronic pain often mimics depression by altering how a person’s brain reacts to discomfort and pain, chronic pain often biologically creates a feeling of hopelessness and makes it more difficult to process future pain in a healthy way. In fact, roughly one third of patients with chronic pain develop depression at some point during their lifetime.

via The Long-Term Effects of Untreated Chronic Pain – Integrative Pain Center of Arizona.

Personally I think that depression statistic should be a lot higher… severe chronic pain almost always manifests some form of depression/anxiety/ptsd, although of course there will always be exceptions.

The number would certainly be higher if stigma against mental illnesses were lessened and people felt free to come to their healthcare practitioners with issues relating to depression without fear of being told to take a pill and get over it, or worse; threat of hospitalization.

Many of us have run the wheel before and we don’t need people mistaking our pain for what it is not, so we keep it mostly inward unless we find someone who really understands the myriad issues surrounding chronic pain, disability, and illness. Bottling it up wouldn’t be such a frequent reaction to stress, depression, and anxiety if we lived with a different cultural attitude toward mental and invisible illnesses.

But that’s for another post.

Wishing everyone a low pain day, with extra energy. ❤

‘Faking’ or ‘Malingering’ or ‘Exaggerated Pain Behaviour’

HealthSkills Blog

words!!

It’s amazing how often health providers get asked directly or indirectly whether someone experiencing pain is ‘faking’ it. The short answer is the most accurate – we can’t tell. We’re not lie detectors, there is no ‘gold standard’ to work out whether someone is pretending or not, and the question is based on erroneous thinking about pain and pain behaviour.

I can almost feel the spluttering at my last sentence from some readers!

Let’s look at this more closely.

Remember the biopsychosocial model of pain states that the experience of pain and pain behaviour is influenced by three broad groups of factors: the biomedical/biophysical factors such as extent of tissue disruption at the periphery (or site of trauma), neurological changes of transmission and transduction (throughout the peripheral and central nervous system), and disturbance of the neuromatrix.

At the same time, there are psychological factors such as the level of…

View original post 1,225 more words

Pledge to Blog For Mental Health

Blog For Mental Health http://blogformentalhealth.com/ is an official project set up to help raise awareness for Mental Health education through the stories we share on our blogs. The aim is to educate and eradicate stigma. To become a part of the project, all you need to do is write a post and take the BFMH pledge.

“I pledge my commitment to the Blog for Mental Health 2015 Project. I will blog about mental health topics not only for myself, but for others. By displaying this badge, I show my pride, dedication, and acceptance for mental health. I use this to promote mental health education in the struggle to erase stigma.”

I found this little encouraging poster for those of us with chronic pain or chronic illness experiencing some of that unpleasant guilt factor:

five things to remember

This pledge to Blog for Mental Health is perfect for me, as I am always attempting to combat the stigma that chronic illness carries, especially that which is lobbied against chronic pain patients. Much of what is thrown at me by way of an excuse for a doctor or nurse to not treat my pain is that my anguish is “all in my head” and therefore they have no responsibility to help me. I think that’s bullcrap, even if it were “just in my head”, where does a doctor who is not a psychiatrist or psychologist or any mental health professional at all, get off deciding that arbitrarily? It seems like having a psychiatric disorder severe enough to cause me to feel severe pain for no reason whatsoever, pain coming purely from my thought process; that wouldn’t be the kind of issue a doctor should just brush off so arrogantly, so hurtfully. What those doctors, one after another, were really saying was “you just need to toughen up and get over it, or you must be faking your problems or exaggerating a lot.” How much trust do you have in the healthcare professional who has sympathy for neither physical nor mental pain? Zero, the answer is most definitely ZERO.

Mental health and chronic illness go hand in hand, especially when pain is involved. It automatically becomes more important and more difficult to maintain our self-worth and sense of value. There is inevitable guilt, grief, and even moments of complete terror and helplessness to be worked through when living a life with chronic illness that sets limitations on us and impacts our daily life. It changes everything to be sick. In light of all that upheaval, it seems pretty clear that we cannot fully achieve the kind of healing we are looking for, whether that is complete recovery or simple acceptance, if we don’t address our conditions from every possible angle, with a major focus on supporting mental well-being for those managing chronic conditions.

I do try to be as emotionally honest as possible in this blog, but from now on I will be paying extra attention to making sure I fully and accurately convey the feelings that I am truly dealing with, rather than the feelings I wish I was having. That will force me to start identifying my own emotions more, which can only be a good thing as it will help me discover patterns and triggers, which is a major goal of mine this year.

In addition to taking the pledge to Blog for Mental Health, I promise to spend more time reading and commenting on fellow mental health bloggers’ work, and will seek out new research and interesting coping techniques, while striving to be more open about my own mental health journey in the process.

To kick this off, it seems logical that I state clearly that in addition to my many other invisible illnesses, my diagnoses include several anxiety disorders (well, more like all of them…), PTSD, depression, and ADHD. There’s more, I feel like, but I’m distracted by the fact that I usually don’t like to write down that I have depression or PTSD. I have always believed that they are my fault, some massively shameful character flaw that I could (and should) just ignore until they go away. That view has changed, but it still doesn’t sink in that I do not need to feel guilty or ashamed of those parts of myself. Slowly, ever so slowly, I’m relearning everything I thought I knew about mental health and I am getting used to taking it easier on myself in the process. I didn’t choose mental illness, or chronic pain, but I am doing the best with what I have been given.

I’m honored to take part in the Blog For Mental Health 2015 project. Check out the BFMH website and take the pledge!

To celebrate being involved with this wonderful project, I will be updating my Resources page with several mental health subsections with support groups, research websites, and anything else useful that I can dig up around the web.

Hope this finds you in a low pain day, beautiful spoonies. ❤

Project #SpoonieSelfie by BrainStorm

From the wonderful blog Brain Storm, I bring to you the #SpoonieSelfie Challenge

In her words:

Here’s the challenge spoonies:

Help me set the record straight by submitting your most scrunched-up, messed up, real honest-to-God pain face to annaeidt@gmail.com before February 28th, and I will publish a blog post that exhibits of collection of pain faces so real that people will laugh at us (because who are we kidding- these faces are ridiculous), but also see that our pain is often visible, just not usually to the world at large.

Please include your name, illness(es), and where you are from. [NEW: Also, if you like, include a little write up describing the pain you felt in that moment, and perhaps what coping strategies you were able to use.]

If you are feeling really brave, post your selfie on twitter @brainstorm83 or instagram @lousongmade with the tag #spoonieselfie.

Here’s a link to the actual post by BrainStorm: http://migrainebrainstorm.com/2015/01/17/the-spoonieselfie-challenge-2/


 

UPDATE: #SpoonieSelfie Challenge has been memorialized with two installments posted by Brain Storm so far! here they are:

Part 1. http://migrainebrainstorm.com/2015/02/14/this-is-what-invisible-illness-looks-like-spoonieselfie-installation-1/

Part 2. http://migrainebrainstorm.com/2015/02/21/this-is-what-invisible-illness-looks-like-spoonieselfie-installation-2/

To keep up with what she doing as she posts it, head to: http://migrainebrainstorm.com/tag/spoonie-selfie/


Here’s my contribution, from this last week when I fell on my face in the middle of the night! Fun times!2015-01-27 07.26.20

Check out that goofy concussion face! Mere minutes after smashing my face on some furniture because my hip gave out due to EDS/Hypermobility, and I had already not slept for 64 hours at this point, due to some horrendous #Painsomnia. Funny thing though, this very obvious injury hurts SO MUCH LESS than my smallest of fibromyalgia, costochondritis, torn discs and subluxated vertebrae, hypermobility, or chronic fatigue pains.
Even the moment of waking up on the floor with a bunch of blood in my hands was underwhelming, I’m so used to pain that I was just kind of pissed that my face was messed up looking and bleeding and would now obviously take some time to heal, but I never once thought “wow, my nose really hurts” because I still am in agony so much worse everywhere else!
Yet, for some annoying reason, I got so much sympathy for my raccoon eyes and purple, lumpy, swollen nose. I get very little for my invisible, disabling illnesses, even though they are the reason I have two black eyes and an almost-broken nose in the first place!

The night of the fall, around 4am, once I stopped the excessive bleeding with several kitchen towels.
2015-01-27 04.17.32
Currently, a much worse pain is making it difficult to even take a full breath. Forget coughing or sneezing, those actually do make me lose vision and control over my body (I hate the word “faint”). The costochondritis I have right now is so much worse than falling on my nose like a sack of dropped potatoes, and has been going on for over a week now.
The embarrassment was by far the worst part of the whole face-meets-furniture ordeal.
The silver lining is that it did provide me an opportunity to dialogue with people about my illnesses without seeming selfish or dramatic (because the rest of the time, if they can’t see it, I must be making it up). For my friends and family, I keep trying to connect the dots between my invisible illness and this visible sign of my body’s deterioration.

One day later it was a little more obvious in the raccoon eyes, but completely painless unless I poked the injury directly.2015-01-30 11.07.29

When I saw BrainStorm’s post about #SpoonieSelfie, I got a little more ambitious. Now I want my photos to help as many people as possible to understand that invisible disabilities can sometimes cause injuries that are quite obvious, but the rest of the time, even when my face doesn’t show it, I am still in pain, I am still dealing with illness every minute of every day. Many of us are so good at putting a smile on! It comes from years of practice, and the knowledge that negativity is not so fun to be around. The problem is, we are still hurting, and we are still fighting our conditions no matter how great we look on the outside. Saying “You look better, you must be feeling better” is like saying “I hate the font, so even though the story was great and the writing was compelling, it was a terrible book.” No?
 –
See, most of us are pretty skilled at smiling no matter what is going on. I get a lot of “I wouldn’t have known unless you told me” and I am always a little shocked, because it seems like the pain should always be obvious. Later, I’m relieved, because it means I still have an identity beyond chronic pain and illness and one set-back after another. People still see me as something other than my diseases and that is pretty freaking awesome, and instills a lot of hope; things can still return to some form of functional normalcy, some day, some how, some way.
smile anyway!
That is why Brain Storm’s idea for Spoonie Selfies is so awesome! Send your copies of your worst, most honest pain faces (think no make up, bed hair, bags under your eyes, crocodile tears, sweatpants, greasy skin, facial expressions and poses that happen when you’re at your worst, medical devices and piles of pills, etc,). Let the world know that invisible illness is very, very real! Submit your own photo/photos and support project #SpoonieSelfie by posting your pictures on social media with the above hashtag, and a linkback to the original blogpost: http://migrainebrainstorm.com/2015/01/17/the-spoonieselfie-challenge-2/. When you are done, send your pictures to BrainStorm’s email (annaeidt@gmail.com) so she post them at the end of the month. Please support and share her campaign throughout February, as she is an inspirational blogger running a very wonderful awareness campaign.

I want to thank Brain Storm for her energy and time and for the great idea of hosting this wonderful challenge, I couldn’t think of a better way to use these pictures. It definitely contributed to me being less embarrassed about the stupidity of painsomnia, collapsing joints, a concussion and just generally feeling like a failure for falling on my face in the middle of the night. Now it has a purpose! And I totally love her for that! Plus she posted this challenge on my birthday, so how could I not participate?!

If you haven’t already, now would be the time to go check out her beautiful blog, Brain Storm.
It is full of honesty, humor, and insight into the world of a chronic migraineur. Her writing is brilliant!
 –
Here are three of my favorite posts besides her #SpoonieSelfie call to arms:
 –
What are you guys waiting for?! Let’s share, contribute, have some fun with this, while educating people about your condition at the same time! Please participate in this challenge if you can, or share even if you cannot! The #SpoonieSelfie challenge ends the last day of February, so please have your photos posted on social media, tagged with #SpoonieSelfie and #BrainStorm, and sent to her email: annaeidt@gmail.com by February 28th at the very latest to be included in this awesome awareness campaign!
Undiagnosed Warrior

Be brave, little fighter. There's a warrior within you.

moderndaywarriorprincess

Because All Women are Princesses & are Stronger Than We Ever Knew

Quinn's Cauldron

The Traditional English Witch, Rowan Quinn

Hypermobility Syndrome India

information and narrative

Lyme & Co

A therapist's journey through Lyme Disease

iamchronic

Writing Through The Tragedy And Terrible Beauty Of A Life In Chronic Pain

No More Silence. Speak Out Against Domestic Violence.

Silence Enables Violence. Find Your Voice.

Hannah's Battle to Breathe

Living with a chronic illness: the ins and outs

%d bloggers like this: