Category Archives: Medical Research/ Treatments

Emotional Support Pet or Service Animal?

​Good luck to the Woodstock Elementary Robotics team this morning as they face off in the first round of competition.

All year, the 4th grade robotics team has been researching the differences between emotional support animals, service animals, therapy animals, and compiling data for today’s presentation.


Here’s a quick run-down on support animals:

An emotional support animal can help soothe individuals with conditions like Anxiety, Depression, Autism, or uncomfortable health disorders. Some Emotional Support pets have formal training, while most others become emotional support pets naturally. They don’t need formal training, require registration, or need to wear a special vest to accommodate you- a common misconception.

Therapy Animals are trained animals which are taken to nursing homes to uplift the patients, cancer centers, or they are animals used in therapy sessions to aid in a patient’s progress (like PTSD, for example).

Service Animals are a special class of animal which usually have formal, specialized training to aid an individual with necessities like dressing, shopping, tasks in the home, helping a person get around, and other special skills. Service animals can be trained, for example, to alert an individual with epilepsy before an episode so they can take medication or get to safety to avoid being hurt during a seizure. A Service Animal typically wears a vest while “working” and must stay extremely focused, which is why one should never pet a service dog.

Your pet can become your emotional support animal, especially if you have a distressing physical or mental health condition your pet has become attuned to, and helps you to cope with. Your pet won’t become a “service animal” however, unless it recieves appropriate training and/or has been tested.

There is actually quite a bit of controversy surrounding the differences between service dogs, therapy dogs, and emotional support dogs.  It matters, because taking advantage of service dog and emotional support dog laws can and does put disabled individuals in harm’s way.


After the robotics team learned about the different types of support animals, they decided to study the effects Emotional Support animals can have on people with chronic illness. I was lucky enough to be one of their test subjects by spending time with a fun-loving rabbit named Maz.

After three times bunnysitting, I can say that having a furbaby to talk to, cuddle with, and laugh at does wonders for my mood and movement.

I can’t take care of any pet completely alone, and even the rabbit could be too noisy and messy at times, so the whole family shared in the responsibility.

Since losing my precious dog this past year, life has not been the same. She was my daily emotional support, she adapted to every change with ease, and we shared a special bond that no other can replace.

But each moment I spend with “Maz the rabbit” seems to bandage my heart that much more.

The robotics team has been recording this data, collecting online research, and even visited a rabbit adoption center as a group to learn more about emotional support rabbits.

“Maz” is a full time emotional support rabbit to a young man with Autism who has been kind enough to lend his own fur-baby to the study. Maz is an adventurous and curious little bunny, but when she is finished hopping around exploring, she’ll beg to be pet for hours. 

I’m hoping our robotics team hops over all of the competition today. Rooting for Team W.E.S. Bunnybots!

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Positive Thinking vs. Healthy Coping in chronic illness

What is the difference between positive thinking and healthy coping?

“Keep thinking positively!”

“Keep your chin up!”

“Stay strong!”

These are very common cliche responses we hear from society as individuals with ongoing health difficulties. They aren’t incorrect responses, but when those responding seem to believe this is truly how we handle the horrible pain/illness, terrifying future of further health concerns, and crushing regular losses which all come with long-term illness, then encouraging “positive thinking” alone can have quite a negative fallout.

For example, if one is in severe pain (meaning pain worse than a fracture or pain worse than childbirth, but constant, daily, and indefinite) after years, with treatments only failing, and close friends continue to say, “stay positive” as their only source of inspiration, will those words be uplifting over time? No, the attempt at encouragement over time will add to your feelings of isolation, making you feel increasingly deflated, rather than the intention of making you feel more positive, optimistic, and empowered.

Would you say, “suck it up” to a friend who is grieving over the loss of a parent? I certainly hope not. Essentially, this is the idea surrounding “positive thinking.” The concept that the more we “suck it up,” the better off we will be, and the stronger we are.

PS, Our bodies work exactly the opposite of this construct.

The more we avoid pain, the more we distract ourselves from our true emotions (not negative emotions, but real emotions), the more likely our bodies are to feel the stress fallout and rage against us. One with a chronic disease would do well to minimize stress; we know this from immense research (and I can tell you this from my own personal research on chronic pain and chronic illness!).

Minimizing stress is not equal to avoiding difficult emotions or distracting from pain. We have to face our pain and emotions, recognize them, meet them, and accompany them through our lives. They won’t allow us to abandon them, and we know that trying to do so only causes added difficulty down the road.

In Positive Thinking, saying “sure, I’m doing fine” may make others more comfortable temporarily, but it is not necessarily “healthy” for you or for the relationship. Positive Thinking encourages us to become more closed off, in turn others also allow more distance to grow until the relationship diminishes. They realize everything is far from “fine” but both take part in a ritual of pretending everything is wonderful because it’s far more comfortable than confronting the reality.

“Healthy coping… differs from the popular notion of “positive thinking.” It implies the capacity to tolerate and express concerns and emotions not just the ability to put anxieties aside. Being able to discuss the anxieties, uncertainties and fears, losses and sadness that usually accompany severe illness is generally helpful, despite the pressure commonly exerted by family and friends for the patient to always “keep a positive out-look.”25 “Positive thinking” may represent an attempt to avoid confronting the distress of chronic illness, and doctors who care for these patients and their families are not immune to such patterns of coping.”  Quote from a study in -Emotional Demensions of Chronic Disease

So often during the course of chronic disease, we have to make choices between the temporary comfort of others, and protecting our own welfare. Regularly, our bodies make that decision for us and force us to miss out. Especially then, healthy coping is paramount! It helps us re-gain some footing again. The openness in healthy coping encourages sharing, allowing others around you to understand where you are, what happened in the situation, how they might play a role in being there for you, and how you can be there for them. It lets others know you aren’t too fragile to listen to them and what they are going through, either. Most likely, those around you are feeling helpless, and would like to be there for you, but don’t know how- or how to ask. Being specific in our needs can help us find our own voice, and being more open also can help others who care about us join in on our “support team.”

Fair warning, most will not know how to respond appropriately, but you may be surprised who is game to see how they can be there for you in big or small ways. In being more open, you may also find that your example sets off a chain reaction in others to become more open with you in how they are doing as well. Healthy coping is so much more contagious than positive thinking, because it encourages support, connection, and community!

Isn’t positive thinking the same as optimism? No. Optimism has more to do with responsibility, letting go of guilt, and looking to the past, present and future without seeing yourself as a burden. I recommend reading the book, Learned Optimism by Martin Seligman.

Healthy Coping differs from Positive Thinking in that healthy coping requires us to lean into our feelings- both physically and mentally. Checking in with ourselves periodically, and then making minor adjustments to our lives to course correct for better balance. This may mean you need more rest, more exercise, more time with friends, another visit to a doctor, see a psychologist, open up to a good friend, eat differently, spend more time focused on your spiritual life, take better care of yourself, etc. Chronic illness requires us to make these adjustments frequently instead of thinking everything is going to work itself out until the ignored symptoms or stress build up. Healthy Coping may be the more deliberate, mindful path, but it is the path of self care instead of conveying a false smile.

To start making these adjustments, we can ask, “How are you?” instead of “Are you ok?” A yes or no question forces us to choose only negative or positive, however, healthy coping encourages others to share and touch base with one another and ourselves- this is how support and compassion are built. We don’t have to choose sides in healthy coping. Try not to think of your days as being good or bad, black or white, suffering or overcoming, but instead- working to find balance every day, always learning from your body and those around you, and doing the best you can now, in this moment.

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1070773/

 

 

 

What are the benefits of drinking Hydrogen Water? HFactor Water

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When I had an opportunity to sample Hfactor Hydrogen Water, I was only hoping it would lower my dehydration level and switch up my normal water>>dehydrated>>water>> dehydrated>>cycle. However, once I began researching the studies on hydrogen rich water, I realized that Hfactor is more like a supplement than just a bottled water.

I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

One of my conditions called Dysautonomia, causes me to be perpetually dehydrated. I drink about 200 oz of old fashioned H2O every day, and still, I’m always dehydrated. Those with Dysautonomia are forever in search of fluids that will hydrate well and lessen fatigue, all without spiking/dropping blood sugar. Many drinks that promise hydration or energy are also artificially sweetened, and are also short-acting in benefit. Hfactor’s company suggests drinking 2 packs per day, and if this infusion of hydrogen water could turn my water guzzling into part time instead of full time, I’m interested.

According to my research, hydrogen infused water can improve circulation, performance, speed recovery, balance blood sugar, and lower inflammation.

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Through digestion, the hydrogen acts as an anti-oxidant, fighting free radicals, and lowering inflammation. (Free radicals can damage cells and set off a negative chain reaction.)

Hydrogen infused water and saline have been studied in physical conditions and symptoms like muscle fatigue, periodontitis, pancreatitis, gingivitis, allergies, diabetes, cancer treatment side effects, bladder pain in Interstitial Cystitis, healing in severe burns, hypertension, brain injury, Parkinson’s, Mast Cell Activation, and all of these studies reported positive results.

In studies on patients, mice, and elite athletes, the hydrogen rich water ingested orally, effects the body through the digestion process. There are benefits of inhaling hydrogen, and from IV saline, however it seems that during digestion there is a reaction to the hydrogen water which sets off a chain in the body, producing benefits.

According to studies, the effects of hydrogen rich water to your health are progressive. The longer and more regularly you drink it, the more improvement it will show. The company, Hfactor, suggests to drink 2 waters each day, and always within 30 minutes of opening the package. I think of HFactor Water as a health supplement rather than just an energy drink.

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My first impression was HFactor’s packaging looks pretty rad and reminded me of Capri Sun from back in the day. The special packaging is designed to keep the tiny little hydrogen molecules from escaping, but I wonder if there’s another benefit? If you have a child with Autism, Seizure disorder, or Diabetes, HFactor’s kid-friendly packaging and easy-to-sip-from straw might make this water more attractive to a child who might ordinarily only go for a sugary drink.

HFactor tastes like water. Crisp water, with no aftertaste or carbonation (can you tell, I’m picky about water?). Personally, since all I drink is water, I’m quite happy not to sip an artificial-tasting, sugary drink loaded with chemicals. Most beverages affect my blood sugar, but studies show that hydrogen infused water can actually help to control blood sugar.

I drank 2 packs of HFactor every day for a week, and by the end of the week, I noticed my fatigue lessening. It seemed to lessen my brain fog (cognitive disturbance), which is always something I’m after. Each time I drank a package, it caused my head pain to worsen, and some neurological reaction was telling me something was happening, but I should note that many drinks do trigger my pain to increase. I am curious if this was a reaction to the introduction of hydrogen, and if I continued to drink Hfactor regularly over time, if the worsening pain might subside? I like that the product is made in the USA, and the packaging has a low carbon footprint. It is meant to be torn open to place the straw inside, although with my fatigue and pain playing on high mode that week, I used scissors to cut them open instead. At $3 per package, taken more like a health supplement, drinking 2 per day is something I would have to consider. If I were a coffee drinker or chugged sports drinks each day, I would easily be able to justify only $6/day extra.

HFactor can be purchased at http://www.hfactorwater.com/

HFactor Water has been recognized globally for their water and specially designed packaging. This is a quote from their 2015 FoodBev Innovation Awards acceptance press release: “Until now, previous hydrogen products in the global market were manufactured utilizing magnesium and chemical processes. Products were hitting shelves contained in packaging that scientifically could not maintain the integrity of their hydrogen-enriched claims.”

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The most important take-away for me is that HFactor Water is an anti-oxidant rich drink, with anti-inflammatory benefits that can raise my energy over time, help balance blood sugar, and has more positive effects the more I drink it.

For me, this was just a fun opportunity to sample new water, and as I researched the benefits of Hydrogen Water, I realized that this is a very real emerging health tool and I’m excited to share the information with you.

 

HFactor shares more research on Facebook  & Twitter  @HFactorLife

Precious Diagnosis: What’s in a Name?

Even if it’s a terrible diagnosis, you crave even the worst titles, just to have a name. Just to put a label on what your body is experiencing. You dream of a diagnosis for the madness eating away at your body and your life.

You want to scream when test after test comes back normal, appointment after appointment with no answers, and you wonder how much longer your body will hold out like this! Each frustrated physician and healer is at a loss and they know anything more they try could likely only make you worse. So one by one, they set you free into the river of uncertainty to face the un-named beasts in you alone– ALONE.

Instead of one diagnosis, you have a list of conditions that you don’t feel are your own. They are more like guesses your doctors have labeled your symptoms with. “Chronic migraine” for example, or “chronic vertigo.” Those are conditions, but you know they are only symptoms of a larger, more pertinent illness no one can pinpoint.

When I was 22, I was lucky enough to be diagnosed correctly and immediately with a terrible chronic pain condition. The early diagnosis didn’t help me find remission or help me improve my symptoms, but I know it helped me find some stability. Instead of blaming and hating my body, instead of staying up nights searching online to figure out what was wrong with me, instead of cursing my doctors, instead of searching far and wide to find the answer to the screaming question crippling me, I could turn to knowledgeable doctors or information online. I could reach out to a support group with the NAME of my condition. I could blame my evil disease, and so could my family.

At 28, I had a very different experience. After spinal cord damage from a procedure, and a bad reaction to the experimental medication injected, I became more ill than I have ever been… and I’ve been undiagnosable since. Everything was different this time. Tests were normal, doctors gave up quickly and treated me like they were afraid of me. The chronic pain community I leaned on for so many years prior didn’t understand. I was all alone, and my body was trying to kill me.

Even if it’s a terrible diagnosis, having an answer, having a community, having a list of symptoms, expectations, FDA approved treatments- is so validating and valuable while you are suffering so fiercely. You can finally give a name to the monster bullying you, instead of constantly blaming your own body.

When you have a diagnosis, those who love you can advocate on your behalf. They can organize fundraisers and walks, they can hate the illness inside of you. But when there is no name, people doubt you. It doesn’t matter how sick you are, if you can’t identify why you are unable to move or speak or eat, or leave your bed… people wonder about your sanity. They wonder about your will and your strength.

They’ll say you haven’t done enough to get well. They’ll say there is more you could do, and you are just unwilling.  On the flip side, the same people  will later whisper that you became obsessed with your illness and seeking out treatments- that it consumed you. Yes, you are trying to save your own life. And your life is worth fighting for!!! Giving up is not an option!!! Be proud you are so aggressive. Anyone who isn’t aggressive on your behalf should be ashamed- not you.

I have come to accept that my diagnosis is “Complex” and may in fact forever be “Undiagnosable.” Managing the nameless, and finding doctors who are willing to try and do the same is my path now.

We do have some labels that work to help us find each other, support one another, and build community. We can fight together as the warriors with a united cause. We can be identified by “chronically ill”,  “rare disease”, and “spoonie.”

We are undiagnosable, for now, our illnesses are unidentifiable, but we are not invisible!

 

Visit the blog, Undiagnosed Warrior which inspired this post.

 

How to Write a Letter to the CDC

PAIN PATIENTS, WE HAVE ONLY 10 MORE DAYS!
Letter to the CDC
Through January 13th, the CDC will be accepting comments from pain patients, caregivers, and family members regarding opioid pain management of adults before issuing the proposed prescribing restrictions.
If you are a chronic pain patient:
!!!YOU ARE THE BEST PERSON FOR THIS JOB!!!
I understand how intimidating this letter feels, and you might think there are better writers than you out there. But please remember, no one has YOUR STORY! Or your voice! Or your experience! We need as many people as possible to help the people at the CDC understand the necessity of pain medication (and good pain management physicians) for our quality of life and functioning.
Personally, I have learned that invasive procedures have proved to make my condition worse, and pain medication management along with what people consider “alternative medicine” or low impact treatment, have been my best options for living. What is your story? How do pain medications play a role in your life? How do they keep you functioning…or living?
I am including a packet below that should help you compose and send your letter, with the info you need to know.
***After you send your letter to the CDC, we would love to share it at Living with RSD on Facebook also. Please send it in a private message and we will repost it, with your name or anonymously.***
Thank you so much for being an advocate for all of us and working together with the pain community! This a historic. We have a chance to make a huge impact! Thank you so much!

Letter to the CDC
    Due January 13th
-IMPORTANT: you MUST list the Docket Number at the top of your document:
               – Docket ID: CDC-2015-0112
-Compose your letter in Word so you can see how many characters you are using
-click “Review” at the top of the screen in Word, and select “Word Count.” It will track your Characters. Stay within 5,000 Characters per CDC guidelines for comments.
-Using Word allows you to use Spellcheck before sending.
-Save your document regularly to avoid losing all of your great work.
-List your job, former job, current organizations you are involved with, and volunteer work you do (in person or online)
-If you list your conditions, remember that the CDC does not recognize all conditions and diseases (such as CRPS/RSD) so include the McGill Pain Index and/or NIH definition for your condition.
-When you are pleased with your letter, copy your document and paste in the comment section here: http://www.regulations.gov/#!submitComment;D=CDC-2015-0112-0001
-Or Print and mail your letter to:
National Center for Injury Prevention and Control, Centers for Disease Control and Prevention
DOCKET #CDC-2015-0112
4770 Buford Highway N.E., Mailstop F-63,
Atlanta, GA, 30341
-Here, you can read other patient letters to the CDC before submitting:  http://www.regulations.gov/#!docketDetail;D=CDC-2015-0112
-To get ideas about what you might want to say in your letter:  http://nationalpainreport.com/response-on-cdc-opioid-prescribing-guidelines-pain-patients-need-to-be-heard-8828943.html
-Excellent Facebook event forum for pain patients, answering questions in real time and giving advice regarding the CDC letters: https://www.facebook.com/events/1099948746690760/

 

You are the perfect person for this job! You CAN do this! Let’s all do it together!

Should Children take Oxycontin? FDA Approval for Pediatric Pain

On August 14th, 2015, the FDA approved children as young as 11 years old for the drug Oxycontin. There is public outrage and disbelief at the thought of children so young taking such powerful opioids in the midst of the current “prescription drug crisis.” Although there is a great deal of public awareness for prescription drug addiction, it’s important we also understand who this medication is intended for.

I found the article about the new FDA approval on the timeline of a friend who is passionate about raising awareness for addiction issues. She and her friends view this news very differently than I do because of our individual experiences with opioid medications. On one end, prescription pain medications can be abused, cause addiction, ruin lives, and even cause fatal overdose, tragically. In my experience as a chronic pain survivor, I view pain medications like Oxycontin as a tool for temporarily relieving the suffering of a person in severe ongoing pain, the improvement of quality of life, and in the worst cases, prescription pain management can be life-saving. 

The drug Oxycontin or “Oxy” is widely known for its addictive properties and high performance on the black market. The drug was reformulated 5 years ago to make it more difficult for individuals abusing it to get a “fast high,” though its reputation has not diminished.

This is Lucie. She has Superior Mensentric Arterial Syndrome and Complex Regional Pain Syndrome. She was active and healthy until the excruciating pain took over her body. Now, she is in pain all day, every day and night, begging her mother to take away her pain. [How you can help Lucie]

This is K. Chandler Rosemont’s experience in physical therapy. She has CRPS/RSD, or the childhood name RND. Because the nerves are so hypersensitive in the disease, even the slightest touch and movements are unspeakably painful.

To those reading this who have loved ones who suffer from addiction as I do, you may be thinking that making pain medication more widely available is the worst thing to do in this prescription drug climate. Actually, pain medications are becoming harder and harder for doctors to prescribe. Every year, the regulations tighten around doctors prescribing month to month opioid pain medications without refills, blood tests and urine samples are often required (state by state basis), there are strict patient contracts, etc. If a patient does not comply, they are terminated as a patient, and the black mark on their medical record follows them. That is protocol for pain management, and it causes pain patients to view their medications as seriously as they view their pain. (Read more in my article, Pain Pills: Chronic Pain Sufferers Speak)

In response to the growing public awareness of the problems surrounding prescription pain medication addiction, both chronic pain patients and doctors are under tighter regulations each year. However, since 2004, children diagnosed with chronic pain has increased by over 800%! So this approval by the FDA is certainly not unwarranted.

Personally, I believe the bigger problem lies with non-pain management doctors prescribing pain medication with a cavalier attitude. This past year, one of my relatives was prescribed a pain medication after she was seen for a sore throat. Dentists often prescribe a full month’s supply of strong pain medication before knowing whether or not the patient will be able to tolerate their minor after-procedure pain. Studies show that less than 3% of chronic pain and cancer pain patients are actually becoming addicted to their pain medication; chronic pain patients can typically stop taking the medication on their own. However, when pain medication is prescribed for acute, healing injuries without concern of addiction history, doctors don’t consider if the short-term pain could be tolerated without the medication, or if there is an alternative to manage the pain, the average person is put at greater risk for becoming addicted.

It is difficult to think of children suffering in excruciating, non-stop, pain every day, but this is a reality we cannot ignore. Complex Regional Pain Syndrome is a debilitating neurological pain disease that has deteriorating effects on muscle tissue, it shrinks bone, and changes the brain and nervous system to feel pain at an outrageous level. CRPS also causes the skin around the “affected area” to turn purple, black, blue, causes swelling, changes skin temperature, and the skin can begin to deteriorate as well. It is considered more painful than amputation, childbirth, or cancer pain, and there are children living this nightmare every single day. Children suffer from a variety of neurological and muskuloskeletal pain conditions just like adults do. Children are treated for disabling chronic migraines, Childhood Fibromyalgia, and tragically, children are treated for cancer pain.

Oxycontin has been approved by the FDA for pediatric prescription for severe cases of chronic pain and end of life care in children ages 11 to 16. Before it can be prescribed on a regular basis, there is a protocol to make sure the child can tolerate the medication safely. Interestingly, there is only one other opioid pain medication approved for pediatric pain management- the Fentanyl Pain Patch. If you have ever been prescribed any kind of medication to help manage a problem with your own health, you know that it can require trying a few different types of similar medications before you and your doctor find one that helps you without causing intolerable side effects. Until now, children suffering from debilitating chronic pain had only one FDA-approved option to try for pain medication.

There is still the question of theft. Pain medication is often stolen by relatives or house guests who struggle with addiction. I have heard many stories of spouses and caregivers who skim a few pain pills each month when they pick up at the pharmacy. One fellow pain patient told me she kept her medications in a heavy locked safe that was bolted down, but a family member still managed to steal her safe and medications inside. This is a real issue that should be part of the awareness of opioid pain medication addiction along with the patient’s responsibility to protect his or her medications. However, just because there is a public addiction issue does not mean individuals in pain should be deprived of proper care. One problem does not supersede the other. Would you tell a child screaming and writhing in pain every day without sleep, unable to go to school or play with her friends that she should be denied some relief? 

I personally think that a child suffering should have access to pain medications while they seek out other methods of treatments. We know that children respond better to alternative treatments than adults do; however, that doesn’t mean they should have to wait months or years while trying treatments and procedures to have improved quality of life, nor should they have to suffer for years until they are “old enough” to receive proper pain management.

I am interested in your thoughts. Please share them below in the comments section.

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Sources:

http://nationalpainreport.com/fda-approves-opioids-for-some-children-8827137.html

http://www.nbcnews.com/health/health-news/fda-approves-oxycontin-children-young-11-n409621

http://www.drugfreeworld.org/drugfacts/painkillers/warning-signs-of-prescription-painkiller-dependency.html

http://www.medscape.com/viewarticle/807349

Chronic Pain of the Brain: #ChronicMigraine, If only I Could SCREAM!!

For nearly 11 years I have had a neurological chronic pain condition which is known as mysterious, under-researched, difficult to treat, incurable, lacking in treatment options, and also like Chronic Migraine, many say my chronic pain condition is also “rare” when in fact neither actually should be.

Before I had been diagnosed with Complex Regional Pain Syndrome in 2004 (known as one of the most painful chronic disorders) I had never even heard of it. Neither had my family, friends, and many doctors and nurses have never heard of CRPS (RSD) either. However, 4 years ago when my journey with Chronic Migraine began, I learned that something as common as a headache could be even more mysterious and surprisingly harder to treat. I have been surviving a host of head difficulties: spinal headaches (Cerebro-spinal fluid imbalance), Cluster Headaches, Trigeminal Neuralgia (facial nerve pain) and Chronic Migraine which equals CONSTANT intense, debilitating head pain for the past 4 years straight.

But everyone knows what a migraine is. I could even buy pills at CVS for migraines and headaches, right? So why are there fewer medical options for my head pain than for a widely unheard of, “mysterious” and complex chronic pain condition like CRPS? It is baffling! This is debilitating chronic pain of the brain and doctors seem to have fewer resources and fewer answers to questions as well. It’s “ONLY a migraine” seems to be the overwhelming attitude of society and physicians, and it is because of a lack of awareness. I was part of that unaware group before 4 years ago…before my life and brain changed.

While chronic pain crippled me and affected my life and body in every way, most days I found some ways to function using walking aids like crutches or a wheel chair. In contrast, this pain in my head shuts down my thoughts, my eyes, memory, speech, my ears, balance, and just moving my arm or inhaling too deeply sends an electric jolt through my brain. My entire being is stunted due to my head pain. I would never ever want to minimize the horrors that chronic pain sufferers endure, but I had many more treatment options as a chronic pain sufferer compared to a headache disorder sufferer. In 11 years, I still have not reached the end of all options as a CRPS patient, but within a few months I had tried everything available for this horrible head pain.

Did you know that the NIH claims that Chronic Migraine and Cluster Headaches are 2 of the MOST DISABLING CONDITIONS in the U.S.? Thirty seven million Americans suffer from migraines; 2-3 million are chronic.

When I was diagnosed with chronic pain, there were so many tests, scans, physical therapy, both medical and alternative resources to exhaust, invasive injections, surgical options, non-invasive therapies, and tons of different kinds of medications. Even though the benefits were minimal, and most things I tried didn’t help at all, there were options available. And options feel a lot like HOPE when you are barely hanging on from the kind of pain CRPS causes. I feel as though it has taken so little time to expend the resources accessible for Migraine Disease, and even all of the headache doctors don’t seem very informed about what to do next, or how to answer what seem like simple questions. As I communicate with others with chronic migraine and other headache disorders, I have found that others feel the same about how their headache doctors treat their serious symptoms.

This is chronic pain of the brain, the part which controls everything in the body! It is WHO I AM. I am basically shut down for operation for most of the past 4 years. Be your own advocate? Try advocating for yourself when you can hardly speak, move, or open your eyes. When the room is spinning every time you move your head, a bird chirping can send you into a “suicide headache,” you dread something as simple as flushing the toilet, swallowing your water, or even blinking your eyes the pain is so unbearable.

Your senses are held prisoner by chronic pain of the brain- the part of you that registers all of the pain signals in your body, and now has become nothing but pain itself. This is not good enough. There are too many of us, and we deserve so much better than a life whispering in the dark.

If you are surviving Chronic Migraine, chronic pain, or other painful debilitating neurological conditions, you are not alone. February 29th is Rare Disease Day. Please share to help spread awareness. Thank you for visiting and for commenting.

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Migraine.com Statistics:

In the U.S., more than 37 mill. people suffer from migraines. Studies suggest 13% of U.S. adults have migraines, and 2-3 mill. migraine sufferers are chronic.

Almost 5 million in the U.S. get at least one migraine attack per month, while more than 11 mill. people are moderately to severely disabled due to migraines.

Migraines cost the U.S. more than 31 Billion per year in healthcare

Only $19 million goes into researching migraine disorders

~Find me at @aBodyofHope on Twitter

www.Facebook.com/Living.with.RSD for a positive chronic pain support group welcoming all types of chronic pain conditions

Medicating with Marijuana may not be for you if….

With more and more states in the US permitting the use of medical cannabis for different conditions, questions about medical marijuana have been on the lips of nearly every person with a chronic or progressive condition.
Author/blogger, The Disabled Diva answers your questions and curiosities in this totally dope article 🙂

The Disabled Diva's Blog

   medical

Have you been considering medicating with marijuana?  Choosing to treat my chronic conditions with marijuana was the best decision I have ever made regarding my health.  While it has given me new life, I also understand that it isn’t for everybody.  So how do you know if it is for you or not?

Medicating with marijuana may not be for you if…….

….. you do not have access to any medical marijuana dispensaries. Never purchase marijuana from a street dealer!!!! Dispensaries provide clean marijuana and you can be confident that it wasn’t tainted with anything you wouldn’t want to put in your body.

….. you believe that your doctor will support your decision.  Although two of my physicians have not discouraged me from medicating with marijuana, they don’t necessarily support it either.  One understands that it is my only choice because my body reacts so badly to prescription pain…

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Chronic Fatigue Syndrome gets a Make-Over

Article dated February, 2015

Last week, the Institute of Medicine re-named Chronic Fatigue Syndrome, also known as ME, now renamed 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 you need a nap. Your thoughts become so blurry and confused- you begin to fear Alzheimer’s or dementia. Migraines, loss of appetite, body pain, hypersensitivity to smells, sounds, lights- these symptoms are the tip of the CFS/ME/SEID iceberg. Imagine feeling like you are moving through quick sand- and there is no end to the breakdown. You are sure it will pass in time, but as time passes, you only become more weak, frail, and may even struggle to stand and walk. Doctors help you by telling you to “get more rest” and send you home. This is what many with Chronic Fatigue Syndrome experience.

The name, Chronic Fatigue Syndrome has been a problem since its origin. Can you imagine suddenly finding yourself confined to a bed, unable to raise your arms from sheer fatigue only to be told by other medical professionals and family members: “Sure, aren’t we all ‘chronically fatigued?” That has been the overwhelming problem with the original name. Doctors without enough education of the disorder have been brushing their patients off, leaving them incapacitated and searching for answers on their own limited energy supply. It’s estimated that as many as 91% of those with CFS/ME have yet to be diagnosed because physicians are still unsure whether or not it is psychological or “all in their [patient’s] heads”.

Over one year ago, the Institute of Medicine began running studies and tests to narrow down specific symptoms and markers in individuals who develop Chronic Fatigue Syndrome/ME. An independent panel of 15 physicians then met to narrow down a few diagnostic criteria and to decide on a new name for CFS/ME. They believe that each word in “Systemic Exertion Intolerance Disease” is more specific and clear as to how the condition affects the body.

Systemic Exertion- indicating the extreme fatigue or malaise all over the entire body.

Intolerance- implies impairment from any sort of activity. ‘Orthostatic Intolerance’ is an example of a common type of intolerance found in those with CFS (cited in the IOM study).

Like other conditions, those with CFS/SEID experience a long list of symptoms which are not all included in the short diagnostic list; keeping the diagnostic criteria short is meant to help doctors understand and treat patients with this disorder better. Here is the list of symptoms the Institute of Medicine’s special panel narrowed down after one year of testing those with Chronic Fatigue Syndrome:

-Profound fatigue lasting at least six months

-Complete exhaustion even after minor physical or cognitive exertion

-“Unrefreshing” sleep

-Cognitive impairment or “brain fog”

-Worsening of symptoms upon standing or Orthostatic Intolerance

There is a feeling in the CFS/ME community that the re-naming is confusing and sets struggling patients back further. Many in the CFS/ME community are disappointed that the new name is not “Myalgic Encephalomyelitis” to make the name cohesive, finally. Even though Chronic Fatigue Syndrome was the official name in the United States, the international name, “ME” has been largely adopted by CFS sufferers here in the US. However, the IOM argue that there is not significant research showing that patients with SEID have brain inflammation or muscle pain as the core symptoms (the meaning of ME). Some CFS specialists and patients with CFS/ME feel the updated name and new marker symptoms overlook critical issues of the disease like chronic pain, headaches, sensitivities, cardiac disturbances, and gastro-intestinal disruption. This isn’t the first time this disorder has had a make-over, however. Epidemic Neuromyasthenia, Myalgia Nervosa, Epstein Barre, and Royal Free Disease are a few of the names that have been given to those with CFS, now called Systemic Exertion Intolerance Disease. Researchers say in the next 5 years, it may be re-named again, as new research will likely continue to emerge.

Even though there is still uncertainty regarding the new name, many believe there is reason to be positive. The 235-page report released by the IOM is expected to lead to more research for the disease, better funding, and more appropriate treatments for Systemic Exertion Intolerance Disease. Those who at one point may have called up to 2.5 million Americans “complainers” or “lazy” will have more information and education to help the ignorant understand this debilitating condition. Doctors who may have once brushed off their patients’ symptoms because there were unclear guidelines, now have clarity on which criteria specify SEID. And lastly, it is now called a “disease” which shows there is progress in understanding how it affects the brain and body. For such a complex condition that is so debilitating, more understanding and more awareness is paramount!

http://www.npr.org/blogs/health/2015/02/11/385465667/panel-says-chronic-fatigue-syndrome-is-a-disease-and-renames-it

http://www.medicalnewstoday.com/articles/289297.php

Read the IOM report for yourself here:  http://www.iom.edu/~/media/Files/Report%20Files/2015/MECFS/MECFS_KeyFacts.pdf

Biofeedback Yoda

A girl I met my freshman year of college told me about her recent struggle with Leukemia. She said that she had to have both chemotherapy and radiation but she was cancer free now and back on campus full time. I suppose she saw the stunned look of concern as I stumbled over my words… “Um..wow…congratulations…or…well, you look amazing!” She rescued me sharing that she had been trained in Biofeedback and because of deep breathing and self-hypnosis exercises, she didn’t lose her hair, become ill from treatments and she believed it to be why she was in remission so much sooner than the doctors anticipated.

*****

Biofeedback is a medical training method used to help people learn to gain better control over their Autonomic functions. Heart rate, blood pressure, breathing, sweating, body/skin temperature, circulation, stress, and muscle tension are some of the ways we can learn to have some control over our bodies.

For those who suffer from chronic pain disorders, diabetes or arthritis, learning how to increase the bloodflow to the legs, feet, and hands not only decreases pain like cold or burning sensations, it can stimulate healing in the bones, muscles and nerves where there is atrophy, further reducing deep bone pain sensations. People who suffer with Anxiety and Depressive Disorders can benefit by tracking progress through relaxation, muscle release exercises, sleep training, etc.
Some of the tools used along with the EMG Biofeedback device are counseling, meditation, guided imagery, visualization techniques,  music therapy, self hypnotism training, muscle relaxation techniques, focus exercises, etc. Some people describe Biofeedback like playing a video game on the screen, but the remotes are your mind and body. Each program would be different based on the patient, their specialized needs, and the Biofeedback trainer.

Biofeedback has been used by Physicians, Psychiatrists, Psychologists and Counselors for many years and is an evolving method. Biofeedback is used to help those with neurological disorders, chronic illness, terminal illness, learning disabilities, mental illness, chronic pain, sports injuries, sleep disorders, fainting disorders, pregnancy training, Autism, and so many more applications.

It is a non-invasive therapy. Like any physical therapy, it is not a shot, a pill, a surgery or quick fix, and it does require patience and commitment from both the patient and the trainer. Once these skills are learned, they are a part of you and you can use them forever.

Just 10 years ago, around the time I did my Biofeedback training, it was a very rare therapy. Now, it is becoming much more widely available and doctors are utilizing Biofeedback as a non-invasive option for their patients.

I always think of it as the ultimate in mind over matter. I am personally a big believer in Biofeedback as a coping mechanism for chronic pain, chronic illness, and the emotional toll it can take on the body. Biofeedback tools have helped me daily for the past 9 years. If you can physically control it, they can teach you how. And we have so much more control over our brains and bodies than we think. To me, people who get through full training of Biofeedback or Neurofeedback are like Han Solo’s and the trainers are the Yoda’s of medicine.

*****

Zentagle Girl by Artworks Ecclectic | Biofeedback Yoda article #meditation #Yoga #Spoonie chronic illness

Zentagle Girl by Artworks Ecclectic

Thank you Cindy Howe from Ragtop Designs for allowing her awesome Yoga Zentangle Girl artwork to be featured today. She has so many magical pieces in her shop Artworks Eclectic on Etsy. Please go purchase something special for your home or a gift for the holidays!

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