The Grinch Has Nothin' on Chronic Illness

It will happen when dealing with a debilitating chronic illness---your disease will do something that scares you. There's one symptom I know to watch for that means Really Bad Things for me: orthostatic hypotention, a.k.a. blacking out upon standing. It's how I knew my disease had left remission in 2009. It should not be happening now; I'm on corrective medication. That it is happening is Bad News. So rightfully, I'm frightened. Add to this one of my pain meds has quit, with the new one not scheduled to be available until the first of next year and the holidays aren't so jolly.

I have to remind myself to care about the holidays because I know other people care, and bigger still, they can't tell that my indifference to the holidays is because I'm so preoccupied with much bigger issues. I become hyper-focused on daily survival (because that's what it takes) and I lose what month it is. Time becomes a blur---either I'm dealing with symptoms, or dealing with what I had to put off because I was dealing with symptoms. I learned a long time ago in times like these, I have to limit my outings to once every few days... I need at least 2 days to recover from the last 2 hours I left the house. I get about 3 hours of normal activity a day. The rest is in battle with my own body, and it's exhausting! It was just Halloween last week, right?

To cope, I watch a LOT of Netflix. My current escape is anything Anime, as long as it's not about giant robots. The Japanese are very understanding of ignorance, seeing it as an opportunity for giving the gift of education, rather than something to necessarily be ashamed about. I grew up under the rule that if you didn't know, you were ridiculed, so it's a refreshing change of pace. So they use their cartoons to educate kids on manners, how to resolve conflicts, how to deal with bullies, and all without being condescending like those After-School Specials you and I grew up with. And it also reminds me of when I worked at Nintendo of America in Seattle, when I was one of the few people who wasn't bilingual. I remember the sound of Japanese going on around me as business was conducted. I remember how much I struggled to learn phrases like "Thank you for the food, let's eat!" and "Thank you, it was very good'" Those were happy times...

Because I get sucked into that microcosm of surviving moment-to-moment, just trying to claw my way back to normal, I forget what my strength is... that I get back up again. I can't keep up with normal folk, but normal folk don't know how I do what I do.

From my point of view, it's like I'm weathering a storm and just hoping this time, the house doesn't come down around my ears. But that's not what others see. They're not in it, so they don't know that I get scared every time, that I despair every time. All they see is that I go through something like that, and when it's over, I get back up again, like it never happened. They don't understand how it's possible to be so old-hat at suffering that it becomes more of a nuisance and a bore. I know that mystified me when I first got sick. But I saw it happen through the movie Frida, and now I'm finally at that magical place--I'm bored with these health crises. I'm tired of it. It's no longer scary, until it is (and then it's really scary), but that too, has become old and stale.

The difference between then and now is, I actually get tastes of real life between the suffering. If it was all suffering, I don't know how long I'd last. I really don't. But now that I've had moments of life again, all this suffering is just an interruption. I know it's just b.s. I have to push through until I can wake back up to life again. I don't have time to despair when the sun is shining. I don't know how long it's going to last. I've got to take advantage of it, the second I become able to, otherwise I'm wasting very precious time.

Other people see that as strength... my new roommate doesn't understand how I do it. But it's easier than you'd think when you don't really have any other choice. I've been forgotten before and had people stop inviting me out. They thought I'd left. I had... kinda. Not by choice. But how do they know that? Hear it enough, and it sounds like an excuse, no matter how true it is. "Call me in January!" I ask, knowing that no one's memory lasts that long.

So I've decided to start throwing "Still Alive & Kicking!" parties, to let people know when it's cool to start calling again. People want to be polite, but we have no etiquette book on chronic illness, much as I want to write one! lol Seriously, though... we have parties to let people know about weddings, babies, product launches... why not one to let folks know I'm back in the game? And it would be a great way to sweep away those post-trauma blues.

So while my illness may have stolen Thanksgiving, Christmas and New Year's Eve... I'll throw my own festivities just as soon as I'm able. Coming to a Friday Night in 2014! Just you wait & see! I'll be back, baby...

How about you? Ever had a "Get Out of Hospital" party? What did you do? How do you cope when your chronic illness steals holidays from you?

Perspectives on Heroes

What a lot of people don't realize about chronic illness is it's often a sign of a medical success rather than failure. After all, we're still above ground. My disease should have killed me 11 years ago. I'm living a life a should not have been able to. And now that I've got enough pain control to allow me to enjoy that life, I, too, can finally call it #epicwinning.

Oh sure, my life is nowhere near what I thought it would be when I reached this age. Nowhere near. I was in a house yesterday that felt like where I aught to be rather than where I am, and it made me sad. But then I have to put things in perspective: I have a chronic illness. I'm a not a victim, and my life was not cut short, but it sure got close! So is it any surprise that where I though I'd be doesn't match reality? Not really. Who plans on getting deathly ill?

"Then after college I though I'd get a chronic illness, because you know, Paris in the spring just can't compare! And you're never too young to have a major surgery!"

At some point we've just gotta laugh because you realize we're doomed no matter what. It's just what flavor off doom do you want to have? Sometimes it's just gonna suck no matter what. At which time, it becomes pointless to focus on the fact that it's gonna suck. You've got to look at what else you've got.

I was playing chess with a friend of mine, and he was sure he had me beat. He had put me in check a number of times and was closing in for the kill. It was hopeless. I was trapped. There was nothing I could do. So I took a deep breath and I pulled my eyes from the conflict. There wasn't anything I could do there, but perhaps elsewhere there was something I could do to slow him down. And then I saw it. He'd left himself completely open! In that turn I was able to put him in check, and two moves later it was checkmate. I'd won! He was so surprised and upset, he started yelling in the middle of the coffeehouse! It was priceless.

Success isn't a destination far in the distance in front of you... it's what you leave behind you. It's what you're able to build up over time to reach your goal. The goal doesn't hang there in the air. It stands on everything you have built up to it. And every part of your life counts, even the parts you think don't matter. Sometimes especially the parts you think don't matter. Or the parts you're ashamed of and think you have to hide... those most often are the parts that make you awesome.

Think about it---we don't love our heroes because they had an easy path and waltzed carelessly through life, winning every battle. We love our heroes because they have fought and struggled and overcome great difficulties. We value the struggle, even if we don't like that we're going through it at the time. We appreciate hard work, our own and the work of others, because it's work. When we're struggling it's easy to get so focused on the battle we're in, we forget the other side of things. It's easy to get so lost in the doom that is approaching, that we don't look for opportunities elsewhere. But if we're lucky enough, we catch one in time to save our @$$. And that makes the best hero's story: snatching victory from the jaws of defeat.

The fact that I'm sick isn't what's important. Everyone has something with which they struggle. Mine just happened to take this shape. That my life isn't what I though it should be should come as no surprise. When these kinds of things happen, of course life is turned topsy-turvy. I can't expect to have the same kind of life my peers have. But that doesn't mean my life hasn't been successful. I've been plenty successful with what I have had to deal with, and my past is my proof.

I cannot compare what I've been able to do with that of someone who hasn't had my struggles---it just isn't a fair comparison. And if you were to look at my life in full perspective, I'm a hero on a mighty quest: struggle is the name of the game. I cannot say that just because I see my doom barreling down upon me, that then means I am doomed. Victory can come from the most unexpected places, in the most unexpected ways. I haven't lost at life because I've got a chronic illness... I've won against death! That's the most we can ask of any hero.

Paws Off My LOLcats!!!

I watch a lot of TED talks as inspiration for my research. And I was impressed by Clay Shirky's introduction of idea that we've been couch potatoes not because we want to be consumers, but because we didn't have many other options. But then he had to call my beloved LOLcats as "throw-away creationism." Excuse me, sir, but I think you have vastly underestimated the importance of spontaneous and surprising humor in one of the most democratic memes of the Interwebs, which has itself spawned its own form of spelling, grammar and (pardon the pun) copy-cat memes! Take it back! ;)

What saddens me the most, however, is your total disregard for the life-giving force that is humor. Humility is most easy to gain when we are able to laugh at ourselves, and humor---particularly free humor on the Internet---has kept me going through the worst of chronic pain. It helped me survive. And we can't forget personal favorites like #chronicillnesscat! Tell me you can now see the real human good that can come from seeing the most trivial of memes! It may not be saving people from violence, but at the very least it provides hope in the darkest times: "Ah, I can still laugh... I'm not dead yet!"

I wish more people got my deadpan humor... I'm the dark-dry humor type who doesn't like laughing at her own jokes. What sounds like exacerbation is supposed to be a punchline, but not many people get me. The few who do I adore. I'm lucky enough to have an Aunt who really does, and she's a chronic illness gal herself. We have some real zingers, let me tell you!

And please, let me poke fun at being sick! Let me make something good out of this mess! Don't be so quick to think that be cause it has no value to you that it isn't invaluable to someone else.

Yes, even icanhascheezburger.com

Thank you.

Invisible Disabilities Movement

Oh no! Blogger ate this post somehow! I'll have to see if I can find an archived version somewhere. #sadface... At least the image is still saved...

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!!