#NMAM Just shoot me now!

What's your worst Migraine trigger? Can you avoid it? How do you handle it? Huge weather fluctuations do me in. They're the worst... Huge. Inescapable Acts of Nature. Being a human barometer sucks, let me tell you. What did I do about it? I moved across country, to a higher elevation---Denver. I get botox every three months. I follow a sleep schedule as best I can. I pace my eating, and don't let myself get too hungry, or overeat. I balance carbohydrates and protein, and get my vitamins. I exercise regularly, using slow, paced exercises that don't make my blood pressure spike or fall rapidly. I have reshaped my entire life to beat this beast back down into it's rightful place of a slight, occasional annoyance. Every once in a while it's okay to be reminded: I'm a fragile human being.

I have one of those large back massagers (a dual headed vibrator) that I use on my head and shoulders. I have stretching exercises to help the muscle tension that builds up in response to my head pain. I have two medicated creams for my hands and feet for when the migraines make the neuropathy flare. I have medications galore that keep me in balance, and help off-set the break-through episodes. I have mantras that I tell myself to help me keep the faith, and keep pressing on, despite what my head is doing. For when it gets really bad, I have darkness and cold. And in worst-case scenarios, I have the ER. (Thankfully, my migraines have only required one ER trip in the last 5 years, or so.)

Now that I'm getting healthier, I'm also cooking from scratch a lot more, which I have noticed had had a huge impact on my feeling better. There's the sense of accomplishment in pulling off a fantastic meal, I can do some of my physical therapy while at the stove, and there aren't all the additives that come with manufactured food. Granted, there are some good foods you can buy off the shelf (Stouffer's is all natural, and they make an awesome mac & cheese), but they're a lot more expensive than cooking at home. Good in a pinch, but it does pinch the wallet. Fruits and Veggies I'll buy frozen, because they're frozen at peak ripeness. But learning how to make my own caramel and ice cream has been a wonderful time. Soon, I'll tackle more breads! (They're tricky at elevation!)

Mostly, the move has helped me. And when I visit places at sea level, the increased oxygen allows me to do well there, for just long enough to complete business trips and short vacations. When barometric pressure changes are what get you, go to where the swings in change aren't as drastic!

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

#NMAM Tea for Two

If you could invite someone (any living person) to your home for tea for the purpose of explaining Migraine disease to them so they would truly understand it, who would it be and why? I would bring my first GP from University of Washington Physicians, Dr. Ramses. He completely doubted me, and when I finally brought my mother in, he explained he was trying to push me off with mostly harmless medications because he thought I was manifesting these migraines as a tactic to get attention from my multiple boyfriends. How disgustingly rude is that?

Turns out, if he had just run the tests I asked him to run, he would have seen that my immune system was attacking my pituitary, and that my migraines were a result of that furious attack! If he would have stuck around to see me go through the Occipital Nerve Stimulator study, he would have learned that I can hold a steady conversation with 20 milliamps of current directly to my nerves. Why? My migraines shot way past 20 milliamps of pain.

The Occipital Nerve Stimulator (ONS) was an implanted bionic device, used to treat chronic, recalcitrant migraines. Chronic means more than 15 days per month (mine were daily). Recalcitrant means difficult to treat (I had been on every medication known to man, and through every treatment short of cutting nerves). The ONS was surgically implanted. The device sat above my left hip (in the butt), and two wires led from it, up my spine, to the base of my skull, where the Occipital nerves are.

After they implanted the device, they had to program it. They would turn the machine on, and then I would tell them what I wanted the maximum setting to be. It felt like the same uncomfortable, buzzing sensation you get when you hit your funny bone. You'll notice that after you "hit your funny bone" it's difficult to feel your hand or get it to move. This was the same principle for stopping the migraines. Send enough static nerve noise down the line and then the migraines can't generate. It also helped stop a migraine in process, when used over time. I had a really bad migraine when they were programming the device, so I figured that was good fortune in a way. They sat me in a dark room and turned the device on.

"Now let me know when it's feeling liek too much and you want me to stop."

"Okay... Keep going... Keep going..."

"Are you sure that's okay?" she asked very nervously.

"Oh yeah, this migraine is killing me. Keep going... Keep going.... No I'm serious, you can go a lot higher than that..."

"I'm sorry," she whispered. "It doesn't go any higher."

I didn't understand why she was so impressed until later. Most of the people in the study used the device between 4 and 8. I was the only person to use it at 20. My migarines could go higher than that. And they couldn't legally go any higher than that because it starts to damage the nerves.

I am a freak of nature when it comes to pain tolerance, and a freak for the amount of pain I can generation in my own body. It's amazing. Inhuman. It is through ignorance alone, of exactly how bad it was going to be, that allowed me to suffer through it. Four and a half years of freaky levels of pain. And here I still stand.

I want to invite my first GP over for tea.... a big old heaping pile of crow, and a beautifully decorated slice of humble pie. I'll show him the videos of the study sessions, where they adjusted the device, to prove to him just how awesome my pain tolerance is. The napkins will be embroidered with: I TOLD YOU I WAS SICK!

(*lol* Dream big!)

I had the device in for a few years past the completion of the study. After it was able to stop my 4.5 year migraine, I was able to treat with pills again, and those were much more gentle than the device. Plus, I ran into some user difficulties because the device wasn't designed to run at 20. The way it worked was there was a battery that you charged, and then you held that battery up to the device, and it recharged the device. They included little sticky plates and an even a belt, because recharging the device took a long time. Then, recharging the recharging battery took a long time too. They had to give me two batteries, because I ran the device so high. I would have the device on, I would have it charging, and I would have a second recharging battery charging. The second one of the recharging devices was done, I would swap it out with the other battery. I had to keep a near constant flow of charge to the device to keep it running at a level where it worked. It was like I was plugged into a wall. That's no way to live! So when it finally got to the point where I could use medication safely and effectively again, I switched back to that.

The device also made it impossible for me to get MRIs, and with my pituitary disease, that wasn't a good combination. So a few years ago, I had it removed. And since moving to a higher elevation, the severity and frequency of my migraines has significantly decreased. You couldn't even call them chronic anymore.

Yes, I've been a bionic woman. Pretty cool, huh?

#NMAM My First Migraine [repost]

[This is a repost for the June Migraine Blog Event: National Migraine Awareness Month (#NMAM).] Ellen Schnakenberg of Migraine.com posted an interesting migraine fact the other day: Most migraineurs have vivid memories of our first migraine. "It's a shocking occurrance. Our lives change in an instant," she says. For me it was the same. And when I saw her comment, the flood of memories swallowed me whole.

It was 1987 and my parents had taken us on a historical tour of half a dozen southern U.S. states, following a carefully mapped trail my father had made to show us Civil War landmarks along the way. Part of out vacation was a weekend in New Orleans. I remember it was the night my Dad wanted to see the blues bands play. Everyone was excited. Unfortunately, my father insisted on going into the clubs, even though the music was so loud on the street you had to shout to hear.

It wasn't even ten minutes of standing in that noise that I couldn't bear it anymore. My head was pounding. I wasn't surprised. I didn't think it unusual. But we migraineurs don't tend to think well when we have a migraine, and this was no exception for me either. What I didn't realize was I was a teenager complaining to my parents that their music was too loud. Yeah... that should have been my first clue.

On the way back to our hotel, lights got too bright for me even though it was night on the street. I closed my eyes and had my parents lead my by the arm. When they would tell me of an obstacle, I'd open my eyes briefly to move over or around it, then back to voluntary blindness.

When we made it back to the hotel room, my mother, unfortunately decided to put on perfume. The smell doubled me over in nausea. They opened the windows to air the room out, but it permeated everywhere. I wanted to hide under the covers from the smell and the light, but the heat of the blankets made the nausea worse and everything was off balance. She washed it off, but it was no help.

By that point, I also had a pillow wrapped around my head because normal conversation-level talking sounded like cannon blasts. Thankfully, it wasn't much later I was able to pass out.

I was 15.

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!

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.

Migraine.com 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!!

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

I know who to blame for why your doctor has no time....

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.



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)

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.

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.