As a continuation of Rare Disease Month and my hope to spotlight Ehler-Danlos Syndrome and how it effects individuals so profoundly. This is a wonderfully illustrative post on how EDS’ers lives are full of protective gear to keep our joints from subluxing and dislocating all the time. I cried with hope when I read this post. Maybe if I get the diagnosis settled with a genetic test once and for all, maybe then I can get some of this much needed equipment and start to have a totally different quality of life in which I can participate much more actively in physical therapy, something I badly, badly want to be able to pursue without further injury like the last four places I went. This woman’s post gave me so much hope for the future. I cannot thank her enough for all the great ideas to return to once I can see the genetic counselor.
Ok So another EDS related post but a topic that has generate a lot of interest and debate in the past and will probably continue to do so!
I am one of those EDSers who has a brace for almost every body part! (I’m missing a few) The 1st question that most bendie’s will have is how on earth did I get them all off the NHS? and the 1st questions for most medical professionals will be how on earth do I have any muscle tone left?!
My personal approach to splinting is not to replace the muscle/ligament/tendon part of the joint or to detract from its functioning but to stop my joints from getting into un-natural positions and to stop myself from doing any more damage to my already wonky body.. I ONLY wear splints when there is a RISK to my joints, I don’t splint my knees and ankles if I know…
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Coonhound says: Generally I agree w/ BL. If someone can go back to work they don’t need and shouldn’t quality for SSDI. By filing, you aren’t saying your doctor said you SHOULDNT work, you are stating that you CANNOT work and they DO mean ANY job in the national economy.
Any job in the “national economy,” huh? So, should we call Amazon’s staffing agency and say we have millions of chronic pain patients who have been denied disability but are ready to go to work in the closest Amazon warehouse? How about a job where you’re on your feet all day, like a Walmart cashier?
BL says: When someone is not able to work because of their disabilities, they are not able to work period. If they are able to go back to work because they can’t afford to wait for their hearing any longer, then they are able to…
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This is a win, although maybe not the resounding victory to appease each and every CFS/ME/SEID patient (wow, typing that’s going to get old, real quick!), it does make a lot better case for disability claims that have been denied in the past, and for our doctors to try to understand our condition from a different perspective than the one they have been employing for so long.
I’m glad they took the number of requirements for diagnosis and lowered them to include only things that are common to almost every CFS patient, and a short, short list at that, including PEM or post-exertional malaise! Hopefully this name and criteria change will also help primary care physicians make an accurate, much more timely diagnosis, instead of forcing us to languish unacknowledged, in misery, blaming ourselves for our reactions to movement and exercise and thinking it’s all in our heads.
Though only time will tell, I think this is a jump forward for patients and advocates of CFS/ME/SEID, and one that will propel more research, more understanding, and more accurate and less harmful treatments.
A resounding thanks to aBodyofHope for writing this one, I tired myself out just reading all the mini reports and interviews and advocate responses, and wouldn’t have been able to compile this much information in any kind of way, much-less this organized, for at least a week. You are awesome girl! A seriously inspiration, and not just to myself by any means!!! Thank you for spreading knowledge and compassion. I hope that more and more of that knowledge and compassion begins to be reflected back your way from those around you, particularly in the medical field since I know your family is supportive and warm. ❤
Last week, the Institute of Medicine re-named Chronic Fatigue Syndrome- also known as ME, now known as SEID (Systemic Exertion Intolerance Disease). CFS is the name most commonly used in the United States while Myalgic Encephalomyelitis (ME) is the more common name used internationally. As of last week, there is a third name to distinguish this already mysterious condition: SEID.
For many, Chronic Fatigue Syndrome onsets after a virus. Imagine being a perfectly healthy adult, child or teen and after a bout with a feverish flu, you find yourself feeling worse and worse. The appropriate time for the virus lapses, but as much as you fight to get well, your body and mind feel as though they are in shut down mode. No amount of rest or sleep is enough anymore. Just chewing your food makes you feel as though…
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From all the research I have been doing, this is the one MAJOR failing that could painlessly, easily, compassionately be fixed by healthcare professionals realizing the grief that is provoked when you tell someone they are not going to get better, or that they should get better if only they were working harder or being a better person. Not helpful. Inviting someone to be a part of a long term healthcare relationship with goals and someone who calls and checks in on their patients from time to time is what seems to make a huge, massive difference in the quality of life and treatment outcomes of many with chronic pain disorders. I love how cleanly this article lays that side of getting diagnosed out!
Sticks and stones my break my bones, but words will never harm me – yeah right! Words have power when we’re looking for treatment, or we’re giving treatments for pain. I’ve written about the staying power of language used to describe back pain here.
But let’s look at a more distinct problem: diagnoses.
Diagnoses are, in the words of Annemarie Jutel, “the classification tools of medicine…” Sociologically, they segment and order bodily states, indicating what is and isn’t normal. “A diagnosis is integral to medicine because it organises illness, identifies treatment options, predicts outcomes and provides an explanatory framework (Jutel, 2009). ”
Diagnoses also give people permission to be ill. Being diagnosed replaces mystery with — well, something else depending on the label.
Getting a diagnosis indicating that chronic pain was not likely to be alleviated was a striking finding from my PhD research, and supported by numerous qualitative…
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Once again, aBodyofHope deserves a huge, huge round of applause for reframing something that is difficult and turning it into a positive exercise, one that automatically and effortlessly teaches us new coping techniques. Such a beautiful sentiment, from such a beautiful woman and loving friend.
These are the things that cannot be taken from me. I love these hobbies/passions/representations of myself, present tense, not past. If I could suddenly do them all today, I would still absolutely know my way around each of these activities. I still walk and hike in my mind, I still drive to nowhere and sit by a river and write or sketch for hours, in my dreams.
Here are my three passions that will not be taken by disability:
I love to hike, camp, kayak and smell mountain air with all the pine trees, inhale mossy green scents and ocean breezes, and listen to the sounds of nature rising all around me. Getting to hop in the car and drive for hours to spontaneously explore my state is something I treasure doing. I love the way that once home, my clothes smell like campfire for weeks and part of my soul permanently lives in that moment before we pack up to go home, where I imagine what it would be like to stay with the trees forever.
I am a painter, a reader and writer, an artist, a lover of colors, music, and painting trances that last for hours or days, and I have always loved to spend the entire day perusing local thrift stores, garage sales and flea markets for ideas for a project, and for the people watching, too. Bookstores and their whispered secrets always draw me inside, and inspired my creative side to come out and play.
I yearn to do everything from scratch on a large homestead outside of the city, from growing my own livestock, organic produce, and medicinal herbs to canning a year supply of gifts and edibles, to making my own pasta, bread, and pies from scratch. I enjoy crafting all of our soap, laundry detergent, lotion, first aid, and cleaning supplies by hand and hope to own a business selling those tested, tweaked, and perfected recipes to others with sensitive skin.
Another wonderful, timely, inspiring post. I don’t have to talk about that stuff in the past tense now, and that is pretty damn awesome! Thank you so much, Mary darling! What a wonderful frame of thought to operate from!
If you have a passion for something that you can no longer do because of physical impairment, do you truly stop loving it? Then why do we say: “I used to love to…”?
This is one of the most heart-wrenching parts in coming to terms with disability. When you go to say or write the thing you’ve always loved to do, and you realize it is suddenly in past tense. It doesn’t stop twinging your heart each and every time you have to say that you USED to love hiking or taking long road trips. But you come to terms with saying it in past tense. I did. Reluctantly, my old life of passions and dreams was exchanged for my new life of “used to love” and “always enjoyed”. One by one, I locked away those pieces of myself I no longer had…
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This captures it all. All of what it’s like. I really have to thank the author for her clear portrayal of the horror of having your life in the hands of doctors who think you’re less than a human being because you’re in chronic pain.
Pain Pills (Not My Choice)
Just an addict, so you say?
No better way to decimate,
a person than to callously
reject their claim of pain.
I didn’t choose this situation
medicated and dependent,
didn’t choose to live with pain,
but this is where I am.
You don’t know a thing about me,
not my hopes, and not my fears,
where I’ve been, and what I’ve done,
what’s been done to me.
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You all know by now that I am a huge fan of homeopathic treatments, whenever possible, especially topicals and herbs that support whole body health, not just painkillers that come from plants. I know this a debated issue that many feel strongly about, but I live in a state that has sanely decided to legalize by a large margin this year, and where chronic pain patients were allowed to grow, transport, and keep large amounts at their disposal for the last few decades as well. Many of the most comprehensive studies about medical marijuana for specific conditions have been performed here in Portland, up at the Oregon Health and Science University.
Bottom line: Medical Marijuana brings my inflammation and pain down significantly compared to any single drug I take, and I take a bunch of those. I prefer to take a couple drops of a tincture that is almost completely free of THC, so there are no psychoactive effects, and it’s actually a product that is legal in every state in the country because it contains only the other, non-THC-cannibinoids that strongly promote decreases in inflammation and pain, that relax muscles, increase blood flow to brain and tissues all over the body (A major issue for those of us with fibro or other vascular disorders!). These cannibinoids, for those who are interested, include THCa, THCv, CBD, CBG, CBN, CBC, and many still unstudied terpenes and acids that could be the secret to treating an impressively wide array of issues, and each strain of the plant has a diffent terpene signature, so the potential is limitless here.
High CBD strains are stopping children from having grand mal seizures multiple times a week!!! That is pure, beautiful, plant magic.
It can save people from the most barbaric effects of chemo while at the same time helping to support the body killing off cancer cells, also a win!!
Getting people off of alcohol, heroin, crack, etc by switching them to harmless, time honored herbs, also a huge, huge win.
My doctor wants me to get injected with six shots of ketamine to help with my pain, and I rub that stuff all over my body regularly, too (prescription compound cream for pain patients). But why is that safer?! It isn’t. It just is not.
I could go on and on, but this is it for now. Though I will be reblogging and posting much more on this subject, regardless of how much my readership takes a dip. I am passionate about this subject and about this plant’s healing potential for an array of diseases, illnesses, conditions, and I am awed and grateful for the many terminal cases have been reversed with cannabis oil (often known as Rick Simpson Oil, RSO, Real Scientific Hemp Oil, RSHO, or Phoenix Tears).
I’m not just some hippie railing about the recreational awesomeness of a drug, I’m a medical patient saying, as so many fibro patients have said before me, that it is the only thing keeping me alive right now. None of my meds help, I only stay on them right now because the effects of withdrawal are nasty and I’m already detoxing off one icky drug. The exception being anti-spasm agents and muscle relaxers, I think I would die without those too, my body would get to the point where I could not longer walk in a short number of days; all those trigger points would spread and spread until I was just one giant ball of tension. Even on mega muscle relaxers, my muscles get so damn knotted!!! A rub with cannabis in it helps greatly to increase circulation during massage, and that can really help break that fibrous, nasty knotty material in my shoulder, back, neck, head, chest, and legs. Especially if you’re not interested in ingesting it, but want the anti-inflammatory effects, Puna Butter is a great rub, as is Balchemy, and I just make my own because it requires very few ingredients, just some planning a head a couple months to make the tinctures in veggie glycerin (have alcohol intolerance sometimes, so I hate the ones made with everclear!!!!) and then two minutes to whip up a nourishing, completely edible muscle rub. Adding a few drops of essential oils like Thyme, Ginger, Peppermint, etc, to the mixture will lessen your tension even more.
. Although the federal government still lists marijuana as a Schedule I drug, a class “with no currently accepted medical use,” a body of recent research—most of it done in test tubes and animals, but some done in people—suggests that cannabinoids, which are the active ingredients in marijuana, may have medicinal uses even beyond the approved ones.
Further preliminary work indicates that the chemicals may slow the growth of tumors and reduce brain damage in Alzheimer’s disease.
The chemical that induces marijuana’s trippy effects, delta-9 tetrahydrocannabinol (THC), was isolated in 1964. Several other components have been described since, including cannabidiol, the compound used by the epilepsy patients, which does not make people high
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The tears that are running down my face right now are for a friend of many, many years who is nearly out of time. I read her message today about the limited amount of time she had been given by doctors. When you hear that coming from someone you love, admire, and have been inspired and awed by, it does not sink in right away. I mean, it does a little, I sobbed, my hands posed shaking above the keyboard like maybe I would know what to say in reply to such a terrible thing. I have researched and researched genetic stomach cancers and found every positive blog, every survivor story out there, but still I knew that while I was trying to arm myself with information about her cancer, I was also preparing myself for today and for the sadder days that may yet follow.
I don’t have any wisdom to offer, I don’t want to offer condolences to a woman who is still very much alive and still very much herself. I am crying, but I am so, so, proud of this woman for making her time count, for not letting fear run her life. I do not know anyone as strong or as compassionate as she is. She is a rare person, a loving friend, and a fearless fighter.
In honor of how my friend has bravely met this cruel and horrific disease head-on, and in honor of how she has not wasted her beautiful life, not one drop of it, this post by A Body of Hope is the perfect description of what it means to tackle the difficult issue of time passing us by while we are ill. Today especially, it means so much to not let time slip by, to appreciate every sight, smell, sound, and texture I encounter, to savor each interaction with someone, and to honor the way that my dear friend warring with with stomach cancer is leaving such a brilliant legacy behind her through her strength and her smile and the hundreds upon hundreds who love her like they do.
I’m reblogging this to remind myself and others that every moment really is precious, incredibly so.
To both inspirational women: I am incredibly grateful. Words fail me here, I think this is the part where it all does sink in and I need to be held. ❤
I wish everyone facing challenges in life that seem beyond their control could read this comforting and gorgeously honest post.
When we are children, time goes by soooo slowly- sometimes we have more vivid memories from youth than just last week. In High school, I remember dating someone, feeling as though we were together for years when in reality the time may have only been months, but the value of it was just as great as many years. Was it the focus perhaps? The undivided attention? Was it the emotional impact? The relationship blew out a canyon of feelings and memories… like nothing you had ever felt or experienced before.
“Time is an illusion.” -Albert Einstein
“Time is what you make of it.” -unknown
I think about things like this from my bed now. I feel time slipping through my grasp at an alarming speed when I think about how long I’ve been chronically ill. [Especially] When I think of all of the missed celebrations gone by. The weddings. The…
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This post captured so much of what I’ve been dealing with lately but unable to communicate to anyone, and my words seem totally inadequate now. I found myself drawn back to this post for the third read tonight and wanted to share her words of strength.
Talented writer, difficult subject, absolutely lovely and perfect ending.
Made me realize that skipping my affirmations was not a great idea while trying to detox off of Lyrica and experiencing crazy withdrawal symptoms. Time to buckle down and take care of myself a little and stop worrying about trying to get the words out, because I can be assured that someone else has found the words that I cannot. I’m printing this beautiful writing to keep at my desk! ❤
I’ve been having trouble sleeping.
Well, that’s putting it mildly.
I’ve been having trouble falling asleep. And then I’ve been having trouble with nightmares, while asleep. After that I have been having trouble jolting awake, covered in sweat and shivering. That’s generally followed by trouble tossing and turning for several hours, trouble going back to sleep and, finally, a fitful 2-3 hours of troubled drifting between levels of consciousness until I finally give in and drag myself out of bed for breakfast.
It’s been pretty awful.
For a while I couldn’t figure out what was going on. Was it perhaps a reaction to medication? Stress? Pain? My autonomic nervous system causing more shenanigans?
And any one of those things may be root cause behind this relatively new phenomenon.
But whatever it is, it’s causing a bigger problem than disruption in my sleep.
It’s causing me to feel afraid.
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I don’t mind failure, I relish in it, honestly. Without failure there would be no success, no learning and no growth.
However, just because failure doesn’t scare me, the thought of having to go through a lengthy process like applying for disability more than once is unbelievably daunting now that I am dealing with several chronic illnesses. And since I have the focus of a golden retriever puppy on a walk…
What was I saying? Oh yeah, since I completely lack all concentration whatsoever, I have had to develop some strategies for getting around my deficit. It has been about keeping it simple, being less self-conscious of my mistakes, and looking for positive reinforcement in the smallest of victories.
That was just a list of stuff, so here are some examples: If I want to paint tomorrow, I know I can’t expect to complete a piece start to finish in one day. I have to pare down tasks into steps, or pick smaller goals now, like just sketching my idea out one day and then doing a couple coats of gesso the second day. When something turns out not quite right when I do finally get around to painting on the third day, or maybe the fourth or fifth, I just try to focus on the process more instead of the final result. Even if it turns out looking more like a muddy field than a work of art, if I can use that canvas as a learning tool for teaching myself a new technique (or how not to use a new technique), then I go ahead count it as a victory, whereas before I would have gotten mad at myself.
I think one of the most valuable things that being chronically ill has taught me is how to view failure as success. I have become very good at being my own inner cheerleader (see, I’m doing it right now!). There is always a silver lining, and there always has to be. Every time I find one, I win and Chronic Pain loses. It might not even seem like much at the time that I find the little shiny piece of gold in all the shit, but it is everything when I look back.
This year was the year of perspective and organizing my thoughts, and one of the results is that I finally decided I am not weak. I have been through too much and stayed true to myself for too long to be weak. I might be writing this in a jumbled mess of words that will hardly make sense when I go back and try to fix it up into some semblance of English tomorrow morning over coffee, but I am writing, not wallowing. I’m changing my story by choosing to find the victory in the very small. So that later I can look back and see happiness.