When I Drempt of Being a Unique Snowflake, This Is NOT What I Had In Mind!

I don't know if it was a steady diet of fairy tales in my youth, or if all teen-aged girls do this, but I'd often dream of being recognized as special and rare... when they gave me my diagnosis of Autoimmune Hypothyroidism, I did not put a check in the "winning" column. Oh, it was a win, to be sure, to finally have the root of nearly all my symptoms (those not given to me through my battle with MRSA - not a good time, by the way). I'm not sitting at home asking people to take pity on me. Share in my frustration, cry with me through the tough stuff, but don't ever pity me, I am not a woman who needs or wants your pity. So when assumptions are made about me based on conjecture and prejudice, I am truly dumbstruck. I shouldn't be, but it happens every time.

You and I exchange knowing looks, roll our eyes, and say, "better luck next time." But we all know the epic grind it can take to gather up all the medical evidence you need... meanwhile, I'm wondering if my soul is being weighed against the mass of a feather as somehow 10 years of evidence means jack-all, given one "I thought it up so it must be true!" Ten YEARS, and somehow answer B looks to be the better choice in their professional opinion. There I go again.... speechless.

I mean, my Unicorn Sister and I could write volumes on the bits they've left out of the books on our disease, but that's because we both have the same thing. And if this was all a prednisone mistake, how did I know I was in remission and overmedicated? Why did I request to come off my meds for 9 months if it was just one big misdiagnosis? How on earth would I have and MRI showing an INFECTION in my PITUITARY?!? Did I drill a hole into the middle of my brain and expose it to bacteria? I mean, what?! What more do you want than PHOTOGRAPHIC EVIDENCE? And will someone wake me up from this nightmare? Can I get an, "Amen!"?

And why was I so scared to go to med school if this is what I can expect? (I know why I didn't... chronic illness made me drop the program, and I went for my best chance just to get through -- and I'd almost kill for that kind of health again! lol) So who am I kidding, I would have washed out, burnt out or both. And I'm happy with the path I ended up on, so no regrets....

Still, there are some days...

My grandmother knew there were days like this. That's why she didn't let them touch her after her heart attack, and she lived for another 30 years. There is truth behind an old medical school saying, "Don't kid yourself, the moment you walk through that door as their doctor, you start killing your patient." And I agree, there should be caution in medicine! Unless the disease is killing them faster than not intervening, and that's when its appropriate to step in, risks be damned.

So like I found my pain specialist, I will find my endocrinologist. Referrals are unreliable. Sure that fellow doctor is good to you, but you're his peer! That has no relation to how he deals with his patients. So I'll have to come up with my screening questions and start interviewing practices. I miss the old bydls message boards; they had lists of doctors that would be objective about tough cases, and several listings for a place as big as the Front Range. Such a loss. Still, I can do this. It's gonna be a grind, but I can manage it, and make it look awesome doing so.

It would just be nice if the system worked the way its advertised for a change, ya know? Oy vey.

P.S. - I went to the IDA banquet recently and have wonderful pictures to share, but I got sick with a stomach flu shortly after so I'm just now starting to catch up. More soon, I promise!

P.P.S. - Calling myself a Medical Unicorn is just a play on that whole "think horses, not zebras" med school saying, though it is terribly ironic in this context. It's okay to snicker. ;^)

The Curse of a Bad Doctor

This is a horror story too many of us know all too well: a bad opinion of some doctor gets in your record, and the ghost of that awful experience haunts you throughout your medical quest, poisoning the options of others before giving you a chance. It's happened to me more than once, and it can ruin entire health networks for you. It's happening to me again, as the notes from the doctor who though she could diagnose me through looking get forwarded on to the new endocrinologist I'm trying to see. I was called to be told that they had no reason to see me, even though the labs contradict everything she states in her letters!! But who cares? She's the head of neuroendocrinology for the state, so who's going to take my word over hers?

So I'm going to have my MRI sent from Seattle, the same MRI that got me in to see the quack (but mysteriously that keeps getting left out of the pile of evidence), and see if he'll take me after that. But even if he does, that doesn't mean he won't have an attitude when I finally do get in to see him... Doctors are funny like that. They don't like it when patients push back, regardless of whether or not it was the right thing to do. All I can do is hope he sees reason, but that too seems in short supply among doctors. If the original doctor I'd gone to see had been reasonable, I wouldn't be in this mess. I mean, really... Who gets lab results that disprove the theory, only to have the theory upheld and the evidence discarded? Isn't that what they teach people NOT to do in the sciences?

She claims my original cortisol stim test was "mildly abnormal" which is dead wrong. My original diagnosing doctor was surprised I wasn't in a coma! She claims that medication changes were based on my "feelings" and never mentions all the labs that supported those "feelings." She claims I've been on prednisone since my original diagnosis, but I was off all medication for 8 months while my disease was in in remission. She claims no worsening vision or diplopia (I have both). She says I dont' have cold or heat intolerance (I have both). She claimed no tingling, burning or numbness (I have all three and I'm on serious medication for all three). She claims I have no muscle weakness or easy bruising, when I told her of both. And she claims I have "emotional lability" (a nice way of saying neurotic) all because I got a little choked up telling her about 10 years of chronic pain... as if I was supposed to be stoic through the whole thing.

And now I can't get a doctor to give me an appointment because of all her lies. What ever happened to "do no harm"??? How on earth do a fix a medical record that's full of LIES?!?

SO ANGRY!!

Pay It Forward

I have had strangers reach out to help me just when I needed it most. They did it out of the kindness of their hearts and then, just as suddenly as they appeared, they'd also disappear, leaving me with a huge desire to reciprocate and no one there to receive my gratitude. So I do the next best thing. If I can't pay back, I pay it forward. This is why I'm so overjoyed to find a home a HappyHealth. I can't say it enough... Here's a chance to do genuine good for the community that has supported me for so long.

I'm writing the design specs as we speak. I'm so exited that I have to remember to curb my enthusiasm! So many things are easier said than done, but I believe all the pieces are falling in to place to make this a dream come true... (Knock on wood!) Our focus group has provided a lot of good feedback, and we're responding to it with design changes. Our focus groups is where patients are helping make a website that works for them!

But the scary part is, it's so easy to fail. And my health isn't helping one bit. I've had to quit full-time work because I'm losing potassium to the point I was hospitalized for two days. That should not happen with my disease, and all the literature says to -avoid- potassium. So I'm a medical freak among medical freaks. Great!

But I'm not letting that cloud my vision. I want to give back to every health blogger, every active member in grass-roots, patient-built forums... I want to give back to everyone who gave to me, and that list is long! So I'm going to give my all into making HappyHealth a reality.

See, every other Health-Industry-supported patient-website out there is falling all over themselves to help people with the heart & vascular disease, diabetes, and/or obesity, as if those are the only health issues out there! But you and I both know that chronic pain is a far worse epidemic than anyone else realizes!

Millions suffer from acute or chronic pain every year and the effects of pain exact a tremendous cost on our country in health care costs, rehabilitation and lost worker productivity, as well as the emotional and financial burden it places on patients and their families. The costs of unrelieved pain can result in longer hospital stays, increased rates of rehospitalization, increased outpatient visits, and decreased ability to function fully leading to lost income and insurance coverage. As such, patient's unrelieved chronic pain problems often result in an inability to work and maintain health insurance. According to a recent Institute of Medicine Report: Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research, pain is a significant public health problem that costs society at least $560-$635 billion annually, an amount equal to about $2,000.00 for everyone living in the U.S. This includes the total incremental cost of health care due to pain from ranging between $261 to $300 billion and $297-$336 billion due to lost productivity (based on days of work missed, hours of work lost, and lower wages).

Much more needs to be done to meet these challenges and to increase public awareness of them.

--American Academy of Pain Medicine, "Facts on Pain" (emphasis mine)

More does need to be done, and I believe we're the ones doing it.

Could you imagine saving the equivalent of a grand per citizen per year in health costs? Could you imagine taking 7 million people and putting them back to work in an environment custom-suited to their disability needs? These are very REAL possibilities at HappyHealth. This is what we're working towards, while helping doctors manage more cases with less time, while providing better patient care and support.

And if we can do this for the chronic pain community, then repeating our success for the other three health biggies should be easier to manage.

I know it's a big dream, but I'm not dreaming this just for me... I'm dreaming this for my Unicorn Sister, and Ellen Schnakenburg, and Kerrie Smyres, and everyone else who's given me support through the last decade, not to mention all my great doctors! There are too many people to count!

So not only do I want to do this with all my heart, but I believe I owe it to all of you to make sure I give this my best. I mean, above all, I want to save someone else from having to go through the hell I did with my disease. Now that I've done this for a decade, I've figured more than a few things out that I wish I had known from the very start. And I'm sure there are plenty of others who can say the same. If so, stay tuned here or at HappyHealth.me for when we start rolling out opportunities to let your expertise shine!

But in the meantime, I have a document to finish!

You're Fired!! (or, How To Find A New Doctor)

It's one of the scariest, most humiliating events that can happen in a patient's life. The doctor comes in and says, "I'm sorry, but we have nothing left for you." That's it. Maybe a 30-day supply of meds, but it's over... You've been fired as a patient. Your heart breaks, and sometimes they even blame you as an excuse to cover their @$$. You feel defeated, abandoned, and most of all, rejected. I thought being fired meant the doctor had decided there was no hope left for me. And for the first six times it happened to me, I felt suicidal afterwards. But thankfully I had friends and former doctors who told me through my tears that it was NOT my fault, and there are doctors out there willing to help. It's just a matter of finding them, which I was finally able to do. Here's how...

First, know that you're not alone. Second, Do NOT take this personally!! They most likely didn't fire you because of anything you did wrong. They fired you because they can't handle your case. That's not your fault, that's their shortcoming. And having you around is just a constant reminder of their failings. Of all the professionals out there, doctors are least likely to admit they can't do something. Which means the only ting left is blame the victim (i.e., patient).

Know that I'm so sorry you're going though this. But also know this isn't the end! This is a Golden Opportunity to find someone who genuinely cares. I've been able to do this myself, even though it took me a long time to figure this out (years). If you follow the steps below, you should be able to find a doctor who won't run away.(YMMV*).

Call doctor's offices and ask to speak with the appointment scheduler. When you get a live person, ask them if you can ask a few questions about the doctors first. (If you're redirected to a nurse or other staff, that's fine... Just make sure you're talking to a live person for the next steps.) Start of by explaining that you have a difficult case, so you need a doctor who's going to be willing to spend a lot of time with you. Tell them you're looking for someone who specializes in tough cases, and ask if there are any doctors like that on staff, and if they're taking new patients (and your insurance). If you're in pain and this is a pain clinic, ask if they allow narcotic therapies in conjunction with other remedies. (You can also ask if they are into any Eastern remedies like acupuncture and mindful meditation.) If you like their answers, thank them & schedule an appointment. If you *don't* like their answers, thank them for their time and call the next office. Repeat until you find a willing doctor. Once you do, go to your GP and ask for a referral to the doctor you've found (most are happy to do so). If they ask why, tell them the answers you received and why you think that doctor is right for you. Make your first appointment.

"I thought being fired meant the doctor had decided there was no hope ..."

This is not "doctor shopping," this is doctor screening. Some doctors are in the point in their career that they want just the easy, routine cases. They are not likely going to want to help us. Younger doctors are often more willing to take on challenges to prove their skills. Older doctors, doctors close to retirement age, not so much... Unless they've specialized in tough cases (there are such doctors), but those doctors are rare.

IF YOU RUN OUT OF MEDICATION, you can go to your local Urgent Clinic or Walgreen's Clinic for refills until you ware able to get into your next appointment with your GP. Your GP will normally cover medications during a transition period. However, if it's your GP who fired you, that can really leave you in a sticky situation. In that case, call any specialists you see and let them know what's going on with your GP. They're also usually willing to cover temporary  medication refills during a transition like this. You can also talk to your pharmacist. Many of them will be able to give you a few days' supply of vital medications, or medications you shouldn't come off quickly. Of course, narcotics cannot be obtained from anyone but a doctor. Worst case scenario, go to the ER.

Good luck, and I hope you find a doctor who will work for you.




^*YMMV - Your Mileage May Vary

Opportunity of a Lifetime - HappyHealth

For those of you still with me, thank you. My situation has changed, and I can return to more regular updates. But more importantly, I've been given a golden opportunity to finally give back and start serving the community that has helped see me through my darkest times. It's been through grass-roots community efforts that we have been able to help one another. And now those grass-roots ventures have a chance to team up with a company that wants to listen to us and our needs, and find a better way for our doctors to help us, and not give up on chronic cases like ours.

If you're anything like me, you've been fired from a doctor and given that awful send-off: "I'm sorry, we have nothing left for you." It's humiliating, shocking, and can send you into a talespin of self-defeat. But I've learned through my research and experience that when we hear something like that, it has nothing to do with us and everything to do with the doctor's unwillingness to deal with a "heart-sink case." They see no way to make us better, so they give up and hope that some other doctor will take over. But that's incredibly short-sighted: there's still a person in there, who has to live through all this, and it's really difficult not to take it personally when your doctor fires you for you disease. We wonder what we did wrong, when it has nothing to do with us at all and everything to do with the circumstance in which we're trapped.

And studies on happiness show that it's not the chronic illness that makes us unhappy... It's unmanaged symptoms. "If you have manageable health problems, it doesn't really matter [to your overall happiness]." (At the 3 minute mark http://www.ted.com/talks/stefan_sagmeister_7_rules_for_making_more_happiness.html). What does to happiness, as that video goes on to show, it a person's connectivity to others, and it is exactly that connectivity that gets obliterated when a chronic illness strikes.

But I think there's hope. I think if we can show doctors that, while they may not be able to win against our disease, they can still improve our situation so we can be happy despite our disease, we'd have a real winner on our hands, one that could revolutionize the treatment of people with chronic illness. I think if we can present doctors with a tool that gives them the ability to treat our symptoms more successfully, we can help them to help us get better.

I was recently contacted by a health start-up called HappyHealth. They want to work with me in addressing the needs of patients and doctors, improving outcomes where other companies don't even want to try. But they don't know the secret that we do. And that is, if we can make a difference for folk like us, then everything else is a cake-walk. I know that if we work together to make this happen, we could change the world into a better place.

You can help too! We're looking for people with chronic illness and an opinion to share their thoughts on how HappyHealth can best serve YOU. Every other professional health website/app out there has been written by healthy people for sick people, and they often completely miss the boat on our needs. But if we can create a
place that works for us, and one that helps our doctors not give up on us, then we could help out a lot of people in need.

Additionally, I know that there are many of us out there who are trained professionals who would love to work, but our unreliability due to our disease makes living up to normal standards impossible. I want to create a system whereby it doesn't matter if you don't know when you'll be able to work, the work is there when you're ready, and you never have to worry about dropping the ball. If you can't finish, someone else will pick up where you left off. You'd also be advised by the software when you're about to hit your monthly income limit, so as not to interfere with your disability benefits.

I don't know if I'll be able to do this all, but these are my life goals. There are too many people out there, stuck at home, cut off from life, through no fault of their own. We're routinely ignored and forgotten about because of our illness, and without a medical breakthrough, have no way of making our situation better. I want to change that.

Come join us! We're brainstorming and planning right now, so you could be there from the very start... Send me your email address and I'll send you and invitation to our Facebook group!

Oh, and for more information on HappyHealth, here's a video on the first phase of the project....



I look forward to hearing from you!!

Call Me Icarus...

I may have flown too close to the sun and burnt my wings off... I don't know. I may have spoken too soon. First, It turns out I didn't start working until June, so I called myself undisabled a month too early! But there's more. While I was doing well at work, I ended up with a stomach flu, which can be deadly for someone with my disease. I got through, got back to work, and I thought all was well. Until one night when I started feeling very strange. At first I thought it was another seizure, so I quickly took a Neurontin. When that didn't help, and I started feeling worse, I called 911. They kept me overnight for extremely low Potassium, something that is not supposed to happen to someone with my disease. We're always taught to look for levels that are too high. I am, once again, a freak...

And the symptoms for how to tell if my potassium is too low or too high are exactly the same as symptoms I already get for other reasons, So I have no way of knowing until it's too late, and tool tale can mean dead. Fun times! I can buy a potassium meter, but they run around $400, because it's also rare that someone wouldn't be able to tell...These things are usually used in labs, not on people. But I simply have no other way.

Furthermore, it looks like I miscalculated, and I'm not officially "no longer disabled" until September fisrts of this year. I may actually miss that milestone....

I'm not sure how I feel about that. This new Potassium scare has me worried that I am not actually be able to push myself as hard as I need to in order to join the ranks of non-disabled. This whole working full-time thing might not be a good idea. It's the only way I can afford things (like the two root canals I needed last month...that completely wiped out everything I had saved since the beginning of the year...). It's felt so good to be able to pay off my bad debt too. I was taking calls from my creditors and paying them off cheerfully. I was back in the world of the healthy, and finally could tall anout the things they talk about (like complaining about a bad commute or the latest snafu on the job). it felt so good to be among their ranks again.

It felt so good to be WORTH paying, rather than on charity. It Doesn't matter that I paid into Social Security... I qualified to draw that money based on my pitiful state. That's still in the spirit of charity, even if that charity isn't a hand-out.

Time will tell...

It's Official*! I Am No Longer Disabled!!!

Well, folks... I've done the impossible: I have left the the disability rolls! According to Social Security, "less than one-half of one percent of Social Security Disability Insurance (SSDI & SSI) beneficiaries" become 'non-disabled' —42 USC 1320b-19, Section 2(a)(8). Who da man? I'm da man! But this fact hides a difficult truth: my life is still far from normal.

I am amazingly happy, and I am amazingly grateful, but if I said I didn't mind that I'm still sick, that would be a lie. I do mind sometimes. It's difficult to live in the between. I'm caught between a world where healthy people are expected to be able to fulfill certain obligations. But I'm still not healthy, so I often fall short. Sometimes I feel like I've pulled off exactly what I set out to do, I have made this look awesome... but now people expect me to be awesome as well, and that... I'm not so good at. Heck, I struggle to do "normal people things," like stay on top of the laundry, keep up with my bills, etc. I can do work, and a little bit on the weekends, and that's it. I've learned the hard way that I have to include socializing in there to fulfill my psychological needs, otherwise, I end up feeling like I have no friends, crying on the couch with a blanket and a half-gallon of ice cream!

So I have to keep everything in a fine balance, and I have to obey strict, self-imposed rules, otherwise this whole delicate machinery of my life comes crashing down. I've set things up like a Rube Goldberg machine* in order to achieve what I have. The time I put into the doctors allows me access to the medication I need to control my pain, which allows me to work, which allows me to afford the medication. The medication side-effects require that I get 10-12 hours of sleep a night. Work requires that I be there at a certain time. Which means I have a set bedtime in order to get to work on time. That means I also can't blow my sleep schedule on the weekends, otherwise it's too difficult to get back on track for Monday. That limits what I'm allowed to do, and who I'm able to see, on top of the limitations placed on me by my disease.

My disease means that I don't wake up like normal people. Most people have cortisol kick in around 4am to help them start the waking process. My body doesn't do that because my cortisol comes from a pill. The way I wake up is with adrenalin, because my body has realized that I'm not producing cortisol, which means I better wake up, or I could die! So my fight or flight mechanism is what wakes me in the morning. In a friend of mine who has adrenal insufficiency, she wakes in fight mode. She's even woken up kicking and punching. Me, I wake up in a terrified panic. I can't even use an alarm clock, because that freaks me out so bad I would need a pill to calm down. So I wake up to the gentle sounds of talk radio instead, and skip the chill pill. And my disease also means that I must take my pills at a set time in the morning, so that I'm able to function properly for the rest of the day. It's all very complicated and intertwined.


Rube Goldberg Machine
I was still so proud to make that phone call to Social Security. I was also terrified, because this has been my life for the past decade, and I've gotten accustom to many things, but also very proud. I still shake my head sometimes in disbelief. I've done it. It is possible. I've put my life back together again. I'm walking among the working, and I'm one of them. I pay taxes, instead of being on the government doll. I'm a contributing member of society again! I have made my crippling disease manageable. Wow!

So my message to you is, keep trying. If you have to stop and stand back and re-evaluate some things, that's okay. I've taken a year off from my medical struggles to rest and recuperate. Sometimes that's what we need to then charge back in there with all our might. But keep trying: the impossible is possible. It make take years and a strange, wandering route, but you can get there. I did. I'm living proof (pun intended).

Less than one-half of one percent (<0.5%)... but I did it!
Shiny!!!!

[*Update: Nope, didn't make it.]

From a fan... #mtla

During WWII, the British had posters to help people deal with the bombing raids from Germany (the blitz). ‘Keep Calm and Carry On’ - this poster was to issue it only upon the invasion of Britain by Germany. As this never happened, the poster was never officially seen by the public. Sadly no record remains of the unknown Civil Servant who originally came up with the simple and quintessential Britishness of the Keep Calm and Carry On message. However, since then, this poster has inspired a whole slew of copycats, including this one from my Unicorn Sister! I just had to share...


Thank you!! You definitely make yours look AWESOME!

Prayers for my Unicorn Sister

I've just gotten some terrible news about my Unicorn Sister. She's been given the diagnosis of Dercum's Disease, one of the worst of the worst. And in combination with the pituitary disease we already have, this is a show-stopper. Though she has a reason for all her pain and fatigue (which for a while has been far worse than mine), her weight gain, everything.... it was ALL the disease.... The prognosis is NOT good. No known treatment. A miracle away from a cure. And it can be lethal. Please, please keep her in your prayers to whatever deity you believe in, or even if you don't.... put out a good word to the Universe for her. She needs it.