Wednesday, May 30, 2012

Migraine Awareness Chats

June is Migraine Awareness month, and there are all sorts of wonderful events going on! SomebodyHealMe is hosting two chat events this month, and you should join us! These events uses Chatzy, no Twitter account necessary!

Dates & Topics:
Wednesday, June 6, 2012 at 3 pm CDT: Migraine Awareness Month Chat: What do you wish people better understood about living with migraine disease?

Wednesday, June 20, 2012 at 6 pm CDT: Migraine Awareness Month Chat Pt 2: What do you need in order to live well with migraine disease that you currently don't have in your life. Tangible or intangible. It's all fair game!

Future dates & topics to be announced. Have suggestions or want to host? Email Diana at Somebody Heal Me.

Directions for Participating:

(1) Go to this link: Chatzy Migraine Chat
(Remember to bookmark the link for the future. It will be the same every time.)

(2) Enter password: somebodyhealme

(3) Sign in with a screen name & join the discussion!

To hear about future, upcoming chats, "Like" Migraine Chat on Facebook!

Monday, May 28, 2012

June is National Migraine Awareness Month!!

June 1 marks the kickoff of Migraine Awareness Month (#NMAM): Help Make Migraines Visible. The National Headache Foundation is the world's largest voluntary organization for the support of individuals with headaches. Last year, they were able to achieve over 90 million “media exposures”: a measure of the number of times the migraine message was presented to readers, viewers, or listeners of public media. This year we hope to do even more to help you and others experiencing headaches to better know and understand how to manage them.

If you would like to join the event via Facebook, follow this link. If you would like a list of the blogging prompts, they're available through this link. has published a Twitter challenge too, so if anyone uses Twitter or Facebook or other social media platform that utilizes status updates, they have a bunch for you to use and schedule for coverage all month long! Hashtag for the tweet challenge is #NMAMTC

Join me in June, for a trip into Migraine Land!!

Saturday, May 26, 2012

Being sick is no excuse...

Let me get one thing straight: being sick is no excuse for treating other people poorly. Just because I feel bad is no excuse to make others feel bad. My feelings are my responsibility. Just because I feel like $#!+ is no excuse to piss in other people's Wheaties. Having a chronic illness is no excuse for abusing someone. I don't care how sorry your life is. If you're reading this, you've got it better than MILLIONS. Pull up your big girl or boy pants, and DEAL. I've only know a few people like this*, in the hundreds of people I know like this**, so this is not an epidemic. But a few bad apples can give a group a bad name. So I wanted to put this out here.

Scream and cry and rant all you want! By all means, rage against your disease! But don't ever take it out on other people. This is a darkness we have to carry. They are blessed to be in the light. Don't cast shadows in their direction. Age catches up with us all, they'll be dealing with it soon enough. And then we'll have the experience that my grandmother had:

My grandmother was talking on the phone with my mother, and she was complaining about her friends. "They've all become such whiners...," she extolled. And then she suddenly realized, I've had a lifetime to get use to chronic illness, and they've just started...

90% of seniors have a chronic illness, and 52% of seniors have a disability.

They've just started...

We are the vanguard. We are the troops that stand at the tip of the spear, the first and in front, to break way for everyone else. We have been blessed with TIME: to learn, and adjust, and get used to... This is coming for them too. Age catches up with us all, and for them, there are a lot of surprises.

Take for example... Ask yourself: how many people do you know who've been shot? Not many, I hope. And then think: how many shoot-outs have you seen on TV and in movies? Too many to count, right? Now, what's the myth that we've been sold? That age means nothing anymore (60 is the new 30), that we have a pill for everything (Viagra... don't let a little age slow you down; Zolft, "You just shouldn't have to feel this way..."), and that medical mysteries can be solved by a crack team in 37 minutes ("You just need to find the right doctor..."). Now, how true is that in your life?

They're going to find out soon enough. We need to be ready... to be there for them. We are the vanguard, the ones who learn what we're facing, first. For now, we can help one another, because this $#!+ is hard, and we shouldn't have to face it alone. And then, once they catch up to us, we can help them too.

Feeling bad is no excuse for treating you badly. Don't let anyone tell you otherwise. There is no excuse for abuse. There may be an explanation, and possibly forgiveness... But don't be sold the bill of goods that it's okay. That's a Myth.

* chronically ill & abusive, ** chronically ill

Friday, May 25, 2012

I know who to blame for why your doctor has no time.... -<br />Patients continue to complain that physicians don't spend enough time examining and talking with them.
There's a great story from National Public Radio, about why doctors have had to rush appointments (What's Up, Doc? When Your Doctor Rushes Like The Road Runner). The short answer? Doctors aren't paid to listen. Health insurance companies don't reimburse enough for listening. And in a lot of cases, believe it or not, doctors are running so close to the red, they can't afford to listen, as a result.

According to one infographic from the Wall Street Journal (and supported by the NPR story), it takes seven staff members for every single doctor. Can you pay seven salaries on your income? Remember too, that some of these salaries would have to be other health professionals, like Registered Nurses. This ain't no minimum wage gig. Now, remember that you're also going to have to afford a medical office space. There's no doing this job from home, and a regular retail space won't do... There are all sorts of heath codes and other business expenses. Now throw on top of this insurance costs (one of the highest groups, obstetricians/gynecologists could find themselves paying up to $64,000 or more for coverage, and that's for a spotless record), and suddenly that doctor's salary doesn't look so sexy. It makes perfect sense why more doctors are trying to cram us into 15-minute visits.

Inside a Medical Practice - Family practices like Westminster Medical Clinic [Colorado] are struggling with new ways of delivering and paying for primary care.

I know exactly who to blame for this too: Harvard economist, William Hsiao.

See, as Medicare goes, so go the insurance companies. And he was the guy who changed the payee system for Medicare. He came up with a new model in the 1980s. This model determined how much a doctor got paid, based on how difficult a task it was, modified by how expensive their education was to know how to do that task, modified by how much stress and/or risk was involved in the task. (Check out the book, Next Medicine: the Science and Civics of Health, for a more complete history.) Listening? Not hard---if you don't come to med school knowing how to listen, you probably shouldn't be there. Amount of special "doctor training" needed to know how to listen? Zero. There are no med school classes on listening. Stress involved? None... at least not when comparing it to anything else, and especially not as stressful something like trauma surgery. Risk involved? None---no one as ever been killed from listening. Payout by insurance? Let's see... Nothing, multiplied by nothing, carry the nothing, comes out to... nothing! (Big surprise.) The same goes for reading files, and organizing care following a major procedure. Doctors don't get paid for these things, so they turn into low priorities. Low priorities, even though these are possibly the most important parts of medical care: gathering information so you know what you're dealing with, and disseminating information so that things are done right!

But "how important is the task?" never mattered to Dr. Hsiao. It's not his fault, really. For one, everyone underestimates good communication and documentation... until they need it. (It's why I get paid so much as a technical writer.) And second, Dr. Hsiao wasn't paid to care either! The government signed his checks, and the government was looking for ways to save money. Dr. Hsiao was paid to come up with ways to save the government money on health care. The easiest way to save money? Don't spend it. The next easiest way? Find a way to pay less for the same things. The only problem with this, it changed doctor behavior. And it changed medical school behavior too.

Let's say that you had the opportunity to be a race car driver. You had the skills, the talent, and the changes in life, that now you're going to get paid to break the speed limit. Only, before you graduate from racing school, you have a choice. You can go race a Formula One car, with all the fame, money, and hot babes screaming for your autograph. Or, you can go race a banged-up economy car, at some obscure county fair, with 5-year-olds screaming (not for your autograph... just screaming because they're five). Which one would you choose? Now you understand why there's a national shortage of General Practitioners. Although 56% of patient visits in America are primary care, only 37% of physicians practice primary care medicine, and only 8% of the nation’s medical school graduates go into family medicine.
The United States healthcare system has been facing a decline in its primary care workforce, infrastructure and access to primary care services for several years. A number of factors, including poor reimbursements to primary care physicians, low comparative income, and poor quality of work life due to high patient loads, have contributed to more doctors choosing to train and practice in specialty medicine. This trend has lead to a shortage of primary care providers across the country—likely contributing to fragmented care, inappropriate use of specialists, and less emphasis on prevention. (Study by the Henry J. Kaiser Family Foundation)

Which really begs the question... Why are we looking to the government to fix the problems of health care, when government is the one who made the health care problems in the first place?? They took a three-legged pig and turned it into a porcupine!

(Okay, I see your look... let me explain.)

Say you've got a three-legged pig. Poor thing doesn't walk so well, so here comes along a guy, and he says he's got this great solution! Stick on an artificial leg. Only the artificial leg doesn't work so goo either. It helps out some, but in other areas, the pig is still as broken. The great solution? Stick on another leg! That will help cover the deficiencies of the first leg, and make up the difference. Only that's not enough to make the pig normal either! Stick on another leg! And another! And another! One of these fixes is going to work someday!!! They do this, until the poor creature has so many artificial legs dangling off of him, it's no longer a pig, it's a porcupine.

Now, I'm not suggesting we do some sweeping change to wipe the legs off this pig. That's just a metaphor. But in trying to fix this problem, do we really want to go back to the group of people who thought it was a good idea to do it this way first place? We've been working on fixing this "health care" problem since the introduction of Medicare in 1965... And what was the result of that sweeping change? A doctor in the 1950s could expect to make three times more than a teacher. Nowadays? General practitioners make 3.5 times as much as a teacher, on par with 1950s rates. But doctors that specialize? Those doctors make six-and-a-half times more than a teacher.
"In 2008, physicians practicing primary care had total median annual compensation of $186,044, and physicians practicing in medical specialties earned total median annual compensation of $339,738." (Bureau of Labor Statistics Occupational Outlook Handbook 2010-2011 Edition, Physicians and Surgeons)

"For high school teachers, median salaries in 2007 ranged from $35,000 in South Dakota to $71,000 in New York, with a national median of $52,000." (U.S. Department of Labor: Bureau of Labor Statistics. (August, 2007). Spotlight on Statistics: Back to School.)

Good work, Dr. Hsiao! Even though 60.5% of visits made are made to primary care physicians, and even though the most frequent principal reason for visit is a general medical examination (National Ambulatory Medical Care Survey: 2008 Summary Tables, tables 1, 9, 13 [PDF - 478 KB]), the government has guaranteed that there will be fewer primary care doctors available. Additionally, the government has guaranteed those doctors will be pressed for time, due to cost constraints.

If we want doctors to take time, they need to be reimbursed for their time. I don't know what the solution would be. But the solution to a problem caused by government, is not to add more government.

[Edited to Add]
Seems Peter W. Carmel, President of the AMA, has a similar notion:
The Medicare physician payment formula is a case-study in failed policy. Physicians have long known that it is not working. Polls show that an overwhelming 94 percent of Americans believe the massive cuts it schedules are a serious problem for seniors. Even members of Congress from both parties agree – and that is no small accomplishment – that it is bad fiscal policy and destabilizes Medicare. We now face a looming cut of about 30 percent on January 1 from the failed formula. (AMA: Moving past a failed Medicare formula to focus on quality care)

Wednesday, May 23, 2012

Myth Mugshot Contest -- Medical PTSD

The only real way to combat myths, misconceptions, & stigma is by raising awareness and sharing what is real: facts, stats, info, and narratives. This is exactly where Health Activists excel and align. No matter what your condition or health focus may be - you are dedicated to filling in the information gaps where stigma. That's why we've created the Myth Mugshot Contest.

So often, patients and caregivers are labeled (or at least feel labeled) by their health. Symptoms, diagnosis, treatment, and other things that go along with having (and fighting for) a health cause can open us up to judgment from others. But, at the end of the day, no one can label you - only you know yourself and what you're going through. Only you know which myths are myths and which misconceptions are outdated, off, or just plain wrong. But instead of dwelling on these labels we so often hear - we're doing something about it.

Let's play off of that idea by sharing what is real, true, and correct - and labeling ourselves with that instead.

This week we'll be sharing Myth Mugshots - where members of the WEGO Health team share one thing we think is true, important, and will affirm Health Activists and patients. Then, next week, we hope you'll do the same. Share a picture of yourself holding up a piece of paper that tells your truth. Think of a common myth, misconception, or discouraging thought and reclaim it by writing down something true or a fact about you, your health condition, health community, healthcare, or patients in general.

Now - share your photo! Add it to our Facebook wall and have your friends/followers "Like" it. The photo will the most "Likes" will get a feature on our blog, a highlight on our FB page, a feature in our June Newsletter, and a WEGO Health T-shirt (here's what they look like).

Looking forward to your Mugshots and seeing your mugs as well as your truths. Feel free to invite your community members to make one as well. We'll post our team Mugshots this week so you get the idea - and then you can start posting your pics next Monday, May 21st and having your friends "like" it. We'll pick the winner on May 28th.

I've written about Medical PTSD before. It's something that is very common among people with chronic illnesses. Too often, we are doubted, and our very ability to judge reality is called into question. We know from psychological studies done on other at-risk groups, that disbelief of our situation, of our struggle, caused depression, shame, and low self-worth. We become unable to view ourselves as in control of our lives:

"Our results show that perceptions of unfair treatment, like other chronic stressors, are psychologically burdensome... Many... suffer emotionally because they are unable to view themselves as efficacious and competent actors when treated with suspicion and confronted with dehumanizing interactions." Keith VM et al (2009). DOI 10.1007/s11199-009-9706-5

The easiest thing for a doctor to do is not treat. The shortest sentence in the English language is: "No."

When I'm not believed by a doctor, it's almost an instant panic attack. See, I sat alone, for years, in excruciating chronic pain. No one had to treat me. No one did treat me. And when my pain finally was treated, with an electronic device, I was the only one in the study to use it at maximum strength. My migraines could still shoot past what the device could do. I floored doctors with my ability to act as if nothing was going on, as they turned the juice up to 20 milliamps of current, direct to my Occipital nerves. They could make me go back there again, simply by saying, "No."

Doctors are the gatekeepers to treatments, advanced medications, and nearly all methods of symptom management. They mean the difference between living life, and enduring torture. Plain and simple. Is there any wonder, then, that chronic illness patients are walking around, traumatized?

One of the therapy methods for treating PTSD, is re-establishing the patient with a sense of safety in their own body. Chronic illness patients don't get that safety. It's our own bodies we need to be saved from! To quote a pretty hard-core rap song, by Rage Against the Machine, "There'll be no shelter here --- the front line is everywhere."

And other things have happened. Things I still have trouble writing about. I was hurt. I told him to stop, and he didn't. No one else in the room stopped him, either. My screams were heard three floors down, in the pharmacy. They almost needed pliers to remove the needle from my skull, he dug into the bone so deep. No, it wasn't sexual rape. But it was a violation of my body, all the same. It's perfectly normal to be a bit bent out of shape around doctors after that. Other people have stories like this, and worse.

I tried for years to ignore just how badly I was traumatized. But it came out in my behavior. It come out in an overwhelming sense of doom, that would leave me paralyzed and speechless. It would come out when small things when wrong, and I'd freak out like the world was ending (because, for me, it had been close to true too many times). I would assume I was inadequate to meet the challenges of the situation, and navigate them safely, because too often in the past, this was correct. It wasn't until my brother pulled me aside, and identified it as PTSD, like his military PTSD, that I realized what was going on.

Even still, it wasn't until my health was on the line (again) and I absolutely had to go back to the doctors, that I sought out treatment for my PTSD. I tried to do it on my own at first. I made it through the doctors appointment. I was polite and did everything right. Then I lost my $#!+ in the parking lot, after returning to my car. I broke down in near-hyperventilating tears. Nothing in the doctor's visit had gone wrong! But I was still inconsolably freaked out. I knew then, I had to get therapy before I started trying to do this again.

Things have gotten much better since then. I'm on medication, (or what I like to call #headmeds) which has helped significantly. I'm on a long-acting anxiety medication, and I have short-acting anxiety pills for breakthrough panic episodes (now fewer than 3/month!). I have my symptoms managed, and my success with doctors over the past year is not small feat (including withstanding an awful situation at the University of Colorado). Talk therapy, including EMDR, had a lot to do with that success. The doctors and counselors over at Boulder Mental Health Partners have done a wonderful job. (And it sure does help that they don't have stuffy medical offices and don't wear lab coats!)

I will have this the rest of my life, no doubt. But as I get older, those wounds will heal. I can still be triggered, but as time goes on, those triggers should fade. There is always the possibility of future trauma, but that's true of any human activity. I will face the situation as best I can, and worry about picking up the pieces after. I don't have to try to anticipate every possible bad thing that might happen. I'm capable enough to be able to think things through in the moment. And if I'm overwhelmed? I can always return to therapy.

PTSD is very real. And you don't have to have been in the military, to suffer from it.

Monday, May 21, 2012

Happy Birthday, Make This Look Awesome!

Happy birthday to my blog! It's been one year since I've started blogging, and what a year! I started this blog as a woman hopelessly lost, and looking for answers. I was in chronic pain: an aching, burning, and hyper-awareness of sensation in my hands and feet kept me crippled and miserable. I hadn't exercised in ten years. There was no cure for what I was going through, and no one seemed to be able to help me. So I decided to turn things around, and teach other people how to go through my situation. I asked myself, "If I had to help someone like me, what would I say?" And I started writing...

Since then, it's been miracle after miracle. I thought I was alone, which was a reasonable thing to believe. There are only around 350 of us with this disease. How difficult was it going to be to find another person my age with this disease? Someone who I could talk to and compare notes with... There are over 900 million active users on Facebook. That's like looking for a needle in a haystack of needles! And then I found my Unicorn Sister... a woman my age, with all the same symptoms, down to the elusive pain that was being dismissed by all our doctors. I was no longer alone, and when I wrote my blog entries struggling with my life, she would write me little notes, like, "I feel like you're inside my head, writing just for me." Oh, how that warmed my heart and made everything awful I had been going through worthwhile!!

I also had several things happen, which I though I would never see in my lifetime. A CURE!!! My disease is rare. There aren't fancy ribbons or marathon walks for Autoimmune Hypophysitis. Most of my doctors had never even heard of it until I walked in their door. People with diseases like mine don't get big, fancy, superstars like Venus Williams (Sjogren's Syndrome) or Lady Gaga (Lupus) to speak for them. We don't have collection jars next to the cash register. No one cares! Why should they? Cure cancer, and that would affect millions. Cure Autoimmune Hypophysitis, and that's maybe 400 people. I thought I would die of this disease. I thought it would be the eventual cause of my death. And then there was a cure: Two small observation reports (because there are even too few patients to have a study) showed that a combination of azathioprine and advanced steroids for 16 weeks, eliminated all traces of my autoimmune disease.

I was having trouble with doctors back then. First, I couldn't get an appointment to see the specialist I needed. Then, after seeing the local specialist, I ran into a lot of trouble. She didn't believe I had my disease, and thought that if I were to come off my medication, I would be fine. I had further problems where the tests that were supposed to be ordered, never were. But even after tests were completed and showed abnormal results, she still refused to believe I should be on any medication. I thought I had reached a dead-end. I tried going to another doctor at the same clinic, but she was a fellow, and this other doctor was a teacher, so not much happened there but more friendly stonewalling.

But then, my old endocrinologist---the one who had seen me during my original diagnosis---she got promoted to head of neuroendocrinology at Swedish Hospital in Seattle. As I told my roommate, "I couldn't have wished for better!" I knew I had to get back to Seattle, and I had no idea how I was going to afford it, but then all my followers pitched in, and I was able to go. I was able to meet with my old doctor and establish myself as a patient of hers again. She hadn't heard of the cure, but she's in the process of researching how to go about doing it, right now! She found one of the authors at Stanford, and she's waiting to hear back from him.

In the meantime, Dr. Broyles reminded me that I had an old MRI in my file, that if the neuroendocrinologist had just bothered to look at it, she would have seen my pituitary inflamed, and I possibly wouldn't have had to go through all that trouble of trying to prove I-had-what-I-said-I-had. I'm still working with Hospital Administration at CU on that one. I'm also working with hospital administration at a different hospital, for missing two 7mm kidney stones, and misdiagnosing me with PMS. Whoops. That was a huge ordeal that I'm still trying to manage (I need to get me a better way to tip upside-down). I'm also waiting to hear back from the Stone Center of the Rocky Mountains to see what sort of diet changes I can do, to prevent them reforming in the future.

Finally, and certainly not least, I got pain control!!! This was another big one that I thought would never happen in my lifetime. For one, narcotic pain killers just aren't that good at killing my pain. They work wonderfully on some things. But for the daily pain I was experiencing, they were terrible. I could get overwhelmed by the wooziness of the narcotics, and still be feeling that impossible burning in my hands and feet. Narcotics didn't so much take care of the pain, as they did not make me care about the pain. So, even if my doctors were willing to give me narcotic pain control, I knew it would always be incomplete. I knew it would always hover there in the back of my consciousness, no matter how blotto I got. I had hope of maybe finding a sweet spot where the pain wouldn't cripple me and the medication wouldn't either, but that meant getting approved for long-term narcotic care. Not something easily given in this day and age.

My GP started me up on Neurontin again: last time I had used it for the migraines, and it had stopped working altogether. This time it was for the nerve pain, and it seemed to help some. But I did have the scary experience of my first seizure, when I made the mistake of trying to ramp down too quickly. That, along with another medication, kept me going enough so that I could keep going to doctors. I went to a neurologist, who was finally able to diagnose my pain as small fiber neuropathy. That diagnosis, along with steps I took myself (willing to do physical therapy), finally got someone to take my pain seriously. The first pain clinic I went to was not able to treat me, but I was able to find another clinic, and there I ran into the wonders of methadone. It was like someone attached a light switch to my pain, and simply turned it off. Nothing short of a miracle.

Throughout this all, I have been involved with counseling to help me with my Medical PTSD. I'm terrified of doctors, because I've had some very bad things happen to me at the hands of doctors. The greatest of which was a MRSA infection, which almost killed me in 2008. Through counseling, medication (#headmeds), and progressive success with my doctors ("progress, not perfection..."), I was able to really bring my anxiety under control. Oh, I still have my moments... but I know that they are moments that will pass. Even though my body is not a safe place to be, I can still manage it well enough that I know I can make it through. Though I may experience catastrophic moments, (like an adrenal crisis while camping), I've got the skills and support where I know I'll survive. Yes, I am going through life experiences that are terrifying. It's reasonable for me to lose it every once in a while. So long as I don't lose it on anyone else, that's okay. I can be calm in my doctors appointments, explain myself so that I'm heard, and get the treatment I need. If I run into a doctor that refuses to treat, it's not the end of the world. I can start over with a new doctor, and eventually find someone who can help me get better.

I didn't entirely believe that I could get better at first, but I carried that belief with me, until it came true. I was hoping for enough pain control, and I got even better. I was hoping for management of my autoimmune problem, instead a got a cure. I was hoping to deal with the loneliness my disease, instead I got a sister to share with. I thought I would struggle to return to work, and then I found I'd already started my life's work, right here.

Ya know... I think I might just stick with this blogging thing. It just might be good for me! ;^D

Thank you for joining me in my incredible year.

Friday, May 18, 2012

Tumblr & Facebook Follower Roundup 2012!!

Last, but most certainly not least, are my Tumblr and Facebook followers!! For a long time, Facebook was all I did. I didn't join Tunblr until one of my posts went viral there. I live on Facebook, especially on my bad days, so a lot of my online friends are there, including my Unicorn Sister---a woman who has my same disease. That's where we met, in fact. So these people are far from an afterthought. They're part of my online family.

Tumblr Followers:

Jump Backwards - I am a 30 year old woman. I have chronic pain. I have a documented history of scans (MRI’s, CAT’s and ultrasounds) no showing what is going on. Doctors depend on the scans to make a diagnosis. So far we are sure that I have a herniated disk and arthritis in my left hip. I had surgery done on my hip to repair a labral tear. I do not believe the surgery was successful because the pain has not changed. But seeing they could never get a scan to show the tear how can we see if it’s fixed? I have been told by many doctors that I need to wait 20 years to have a hip replacement. I have found a job that I can work from home part time. I am successful in that job. I still need help. Where can I turn? The State of Michigan does not have medicaid at this time. At least they aren’t accepting applicants. That leaves me using every penny I earn to provide the medications I need. This is the place for my rant. The American health system doesn’t work. People fall through the cracks every day. I am one of them. // I also have PTSD, anxiety and have been diagnosed with a list of other mental illnesses. Most of those diagnoses are by psychologists who want to diagnose you with something instead of just realizing that you are broken. They don’t need a fancy name to say that people are scary to me. I used to cut. I haven’t in 2 years. Each day is a struggle.

waitforthefireworks - jill.17.cbc.CT, you me at six.mayday parade, Isaiah 43:1-3, Proverbs 3:5-6, i have type one diabetes, adjustment disorder and am recovering from major depressive disorder. however, i'm still thoroughly humorous, 4/28/12 : ) , 1/17/12, a belief in magic can offer solace, even if we know it is a lie.

Myasthenic Musings - My name is Rachel, I’m from Canada, and I’m nineteen years old. I was diagnosed with myasthenia gravis, an autoimmune neuromuscular disorder, in September of 2011. I’m a giant nerd and love biology, science in general, good books, playing piano (badly!), birds (especially my parrotlet), horseback riding, hiking, and photography.

Allison in Migraine Land - Lifetime battle with chronic daily headache and migraine.

Fluidity B

That Girl Named Allysa - This blog was created with the intent of finding other people who struggle with the same mental and emotional problems that I deal with on a daily basis. Recently, I decided that I also wanted to help others with similar struggles.

Arcanum Joviale - Ren. 24. INFJ. Minimalist. Diabetic. Gender neutral. I have been described as: awesome, gorgeous, and down-to-earth. I also get described as "an old soul" and "wise beyond my years." Residing in Allentown, PA.


Whatever Floats Your Boat - This blog here is just a day in the brain of colleen. ! // Colleen is the name. // I wish i was much more simplistic then I am. But that is not my choice. My illness may hold me back but my spirit is free. I love the smell of flowers and rain. I really don't judge unless you give me a reason too. I dislike winter for two reasons. One because its just too dang cold and two, it is really lonely. I am an overall people lover. My goal is to make someone smile each and every day. If i accomplish this it makes my day feel complete, no matter how crappy it is. I am a Youth Ambassador the the UMDF. I like it cause it makes me sounds all professional. I love teddy bears and fuzzy socks. Taylor swift is my hero and always will be for many reasons. My friends and family mean the world to me and i would be completely lost without them.I think that is enough for now or ill ramble on for days. Want to know something......just ASK! // Peace out squirrel scouts!

Oh Baby, Baby, It's a Wild World - I’m Meagan. I’m nineteen, but I still think I’m eighteen. I’m a type one diababy with polycystic kidney disease. I’m an insomniac caffeine addict.
I’m crazy.

My New Normals...Living with MS - My name is Nicole Lemelle. I am a writer, an activist, and a person living with Multiple Sclerosis (MS). I created My New Normals to educate those who do not understand MS, reassure people with similar plights and inspire everyone to seize command of their lives. // I have earned a Bachelor of Science in Microbiology from Louisiana State University, a Bachelor of Science in Nursing from Louisiana State University Health Sciences Center, and a Cardiac Device Technology Certificate from the Arrhythmia Technologies Institute. // My education has allowed me to work as a chemist in Baton Rouge, LA, an ICU staff nurse in Las Vegas, NV, a cardiology charge nurse in New Orleans, LA, and a cardiac device specialist in Washington, DC. // As an MS advocate, I donate my time and support to the National MS Society. I am also a member of the Louisiana State Nurses Association (LSNA) and a Louisiana MS Society Government Relations Committee (GRC) Volunteer. // Since 2011, I have been writing for The National MS Society Blog and my work has appeared in various outlets. // I am married to Tommy Lemelle and we reside in New Orleans, LA.

Colour my life with the chaos of trouble. - Welcome to my mind, // We're all a little insane, // I'm Courtney I'm 15 years old. // I'm from Australia. // Music & reading are crucial to me. // I'm anything but normal, // My head is a horrible place to be // A glorious head f*ck. // I'm b!tchy and sarcastic. //
If you ever need anything at all, no matter the time don't hesitate to message me. // Post Traumatic Stress Disorder // Hopelessly addicted to self destruction. // Anxiety and Type 1 Diabetes

This is just a part I portray. A 20 year old dutch type 1 diabetic ('02) who loves reading (and would love to be able to write well). I'm currently trying to major in Philosophy in the beautiful city of Groningen. Also too much in love with music, tea, Nietzsche, Sartre, the Old Greeks and mountain biking to be in a relationship. Stephen Fry, Tim Minchin and Friedrich Nietzsche are my heroes. I am a volunteer for the DVN (my national diabetes federation).

Laura'S Noggin - This is just a little window into my brain and a look into the world as I see it. I'm a type-one diabetic. I love art; it's my getaway. I someday want to become an art therapist when I'm old an wrinkly. For now I'm trying to learn as much as I can.

I am the mountain, I am the sea - Hi, I’m Raechel Diane. I’m 18 years old and I was born on December 14th. I live in the state of Wisconsin. I dislike it here. I’m a senior in high school with plans to go to Santa Monica College next year. I have a chronic condition called dysautonomia, which you can learn about here. I refuse to let it rule my life.

Jessamyn - My name is Jessamyn, I live in Arkansas. It sucks. // I was diagnosed with Type 1 Diabetes in April of 2006. I also have Crohn’s, Dermatographia, Reynauds and Hashimoto’s Thyroiditis. I am a ball of fun. // I’m pretty boring. I bake a lot. I love indie music. My favorite movie is Love & Other Drugs. I really love art, any kind. I have half green hair and a rabbit tattoo. // If theres other stuff you wanna know about me.. idk. I have my gpoy tag or you can ask me. I’ll try my best to not be weird.

Facebook Followers:

Paula Philips

Lynn MacDonald - It took me a long time to get to where I need to be and now that I am where I am at...I just want to keep watching one of my heroes in life, Jimmy Carter, and listening...really everyone else - // OH yeah and I must have music exactly how I have had it all along!! // ROCK ON!!

Dianna Blackketter (Dianna Henderson-Blackketter)

Risa Chrysalis - Just a woman who (pretty literally) woke up one day wondering if this was life or a dress rehearsal. Guess what? It's life meant for living. So I'm now living my life instead of waiting for an elusive "something" no one seems to know. ... I tried like the dickens to avoid spinal surgery but finally gave up and had the bloody surgery (although I still occasionally walk like a drunk woman, sometimes, more often than not (but I can wear my heels again).

Heidi Young

Tora Rivallier-Kirk - Tora is not my first name but a name I got after High School. Rivallier is not my birth Last Name but one I should have had all along. I am not fond of the past but there are a few from there I do want to meet. // I am no longer the man you knew from the past but someone that you still remember. I am more in to music then gaming. granted I still play WoW. Just talk to me and see who I am now and you might be surprised.

Lavi Saxena

Nikki Marie Hauser - My son and daughter are the light of my life. Never did I think I would be so willing to give my life for that of another, until they graced mine. // Mother, wife, student,doula, lover, geek, bitch, and so much more... All rolled into one glorious package. // So much all at the same time :D // Stay at Home Mother who is a student, preparing to dive into a new program to graduate with my EMT-I, so I can get working out of the home. As well as a doula. Means I am REALLY busy, and horribly underpaid ;-)

Elizabeth Mizioch-Crawford

Michelle Anderson-Lamb - Program Coordinator II at Medical College of Wisconsin, Studied Sociology at University of Wisconsin–Milwaukee

Jana Bizianes McKinney - I have a very blessed life. I have lived in Louisville all my life but have travelled all over the world. I have 3 living children and one that is holding my spot up in heaven. My husband and kids are the most important and wonderful things in my life. I struggle everyday to deal with and understand my chronic illness....they are my rock and God has truly placed them with me for a reason. We are a good team and I can't imagine my life without them. After all these years (22 now) my sweet Martin still lights my fire...He is wonderful. Everyone should be so lucky to find their one true love. I thank God for him everyday. My Unicorn Sister!

Sandra Elliott - I teach people how to use web data to make their web sites better, and I design new classes. Oh, and now I manage the training and documentation teams as well! Understand, though - I don't speak for my company here. What's here is my opinion.

Christina Carpenter - What is there to say about me that probably has not already been said, said in judgement, or in a jealous anger rage. // There is no other like me, just ask my husband. He will tell you that I am the only one like me, thats why he married me, thats why he loves me, and thats why he picked me. Because to him, I am special. // And lets face it, Im pretty much a big deal in my world.

Paula Cullins

Tim Harris

Tiffany Gonzalez - I'm fighting for my life right now. I have Lyme Disease but I'm trying to beat it. I've had this for over 7 years but have only been in treatment since Oct 2009. I will be ok, because I've come this far, it's keeping up the momentum that difficult. I keep distracted by trying to help others learn about Lyme Disease & the dibilitating Co-Infections which make us very sick. Having help & understanding during the process of Lyme is so important. // You may read about my journey here: or on Facebook:

Jamie Sohn - Forum Host at, helping fellow migraine and headache sufferers gain more information and become empowered to become partners in their treatment with their doctors. A great site.

Nicole Darnell - Lady Writerly

Wilma Woodson - Wellness Partner with Vitamark International

Debbie Sayers

Cyndi Jordan

Heather Zanitsch - I am a patient advocate coordinator with the National Headache Foundation. I work out of St. Louis, MO to further promote awareness of Migraine disease and other headache disorders. I also try to work at helping others with these disorders to realize that they are not alone and that help and information are here when they need it.

Sandra Kay Prevo Powell

Lexie Scholl

Alice Cossneer - Once upon a time I was a wacky girl/woman who was freaky for any and all sin. one day of lonely fear and massive tears and a hand from above picked her up and now she's freaky and wacky for GOD! // I'm disabled due to the "invisable" illnesses I have so I smile always and try to let the LORD's love shine always. // In case it wasn't too obvious I'm a devout Christian. GOD is first and foremost in my life. I have so much to be thankful for and it is Him I live for and because of Him that I'm alive.

Jennifer Dorfman Pettit - Founder, CEO, UII - Understanding Invisible Illnesses is an organization dedicated to raising awareness of 'invisible' illnesses while providing support to patients & caregivers, through various programs including presentations, activism, social networking, and blogging.

Sherry Rosser Carroll

Heather Cannova

Ellen Schnakenberg - Patient Advocate/Educator, Moderator, Writer for, United States Pain Foundation Ambassador // Community Moderator/Patient Advocate/Educator/Writer, Creating the best and largest online community dedicated exclusively to Migraine and headache. See our articles and discussion boards, hear from expert physicians and patients, or participate in our interactive tools and polls. // WEGO Health Community Leader/Health Activist, WEGO Health Activists: Real life Experience. Real life heroes.

Meagan N Marley Westie

Cate Manzo - Love is never saying you're sorry. // Some say that I am a bit sarcastic.... I can not know what they are talking aobut. I am part Muppet and part Italian. I love more than I hate and I make great snacks and I love spontanaity. I am a good hugger and I love diet coke and beautiful cookies. I love to color and I love to pet fish. I love magic and fireworks. If you're ready for the unusual. If you can stand the color pink and glitter. Ready GO!!!! The Fairy GodMother Collective (a.k.a. Cate the Great!)

Debby Makowski Dietrich

Abe Dickoff - there cannot be change without change // it is what it is

Loretta McCann Bjorvik (Legalize Freedom) (Image used with permission.)

Ada McEwan

Erin Boxley - Erin is now gainfully employed at a reputable Orange County hospital. // I am a nursing school graduate and mother. I live with my family and a mother that's beaten cancer 3 times and has MS. I recently received my RN and am gainfully employed as a neuroscience nurse. This occupies most of my brain power these days, but I am now starting to relax a little into my more permanent roles of mother, caretaker and nurse. // I am already considering my BSN and MSN. Clearly, nursing school left me permanently damaged. // Now I can indulge in my previous hobbies like karaoke, gaming and getting an adequate amount of sleep. // Life is awesome.

Amy Bliss - I'm still myself, I still love those close to me and I'm regaining sanity and confidence. Happy with my children, my relationship and those who love and support me. // "In the midst of winter, I found, within me, an endless summer." Albert Camus

Jacki Clark

Heather Scott Hetler

Laura F McCloskey - My insomnia kicks in.... I'm afraid to sleep because I'm afraid of my dreams! LIFE IS HARD; LIVING IS HARDER! To Judge another is to judge God. Was a stay at home Mom throughout my children's lives. Volunteered all the time and even had to go out and work for a living when things got really hard. Just wish I had continued to work so I would not have the dilemma that I am in right now! Have been married for 35 years, we raised three children, we have no grandchildren. We are not held back by the love we didn't receive in the past, but by the love we're not extending in the present

This will be an annual tradition from this point forward! These are the people who joined me on my journey in 2012. In May 2013, I will post all the new followers that have come along!

Thank you so much for your support!