Wednesday, July 9, 2014

"Placebo Effect" Causes Greater Harm than Good

A review by Psychology Research (@psychresearch) of 21 randomized trials shows that the "placebo effect" causes adverse side-effects in 45% of study participants. This is an absolutely fascinating result, because previous studies of the placebo effect show that a pill that has no medicinal value whatsoever causes participants to improve at a rate of only 35%. What this means is that taking a pill with no medicinal value whatsoever is more likely to cause Harmful effects at a greater rate than it provides a benefit. This could have a lot to do with medication non-compliance and aversion to doctors and hospitals. If nearly half of people report an adverse effect from just taking a pill, and only a little more than a third report a positive effect, then it's no wonder why most people are adverse to taking medication!

I've always though reports on the placebo effect were a bit silly, and now it makes sense why. Scientists and doctors were always delighted to point out that we stupid patients were dumb enough to be fooled by a sugar pill. Doctors took this as proof of their magical, majestic auras... That just the idea that what you were taking was a "medicine" was enough to make you better! The idea of a magic pill was so powerful, that the medicine didn't even have to be real. Patients would get better just because you told them to. How amazing is that!?!?!

Turns out, that was only part of the story, and not even the most important part.

In fact, the though of a medicine is so powerful that it actually HARMS patients at a rate of nearly half. Nearly HALF! That means that patients are so leery, so worried about what their doctor is doing to them, that they will experience an event that convinces them a sugar pill is damaging them.

This experience of harm at a greater rate than help actually fits with what we already know about the human brain. We experience loss at a rate of three times higher than gain. For example, if you insult your spouse once, it takes at least three compliments to make up for that one slight. Similarly, when frightened, we will assume that the noise in the grass is a tiger, rather than assuming it's the wind. Why? Because that's what helped us survive vicious predators as stone-aged cultures. In the past, it has been biologically advantageous to assume the worst. So our brains are hard-wired to do so.

So it makes perfect sense that patients would report rates of greater harm than good from a medication that does nothing. And doctors should realize that they are working at a disadvantage when patients are left to guess whether a medication is going to cause harm or good. The placebo effect is NOT some positive powerful force. The placebo effect is, in fact, a powerful NEGATIVE force, and one than can undermine the entire true effect of a medication! Studies prior to this have shown that chronic illness patients have a medication non-compliance rate of a third to one half, and now we know why. It makes perfect sense, and the myth of the positive placebo effect being the only force at play is totally BUSTED.

We also now have a new understanding of non-compliance. It isn't willfulness. It isn't a lack of willpower or an inability to form new habits (though these things can exacerbate the problem). What is really at work here is the fundamental nature of the human brain to avoid harm in situations where not all the variables are known. If this doesn't speak volumes for the need for thorough patient education, I don't know what does. Humans are survivors, and you don't survive by assuming everything is just fine when you know there's something going on that you can't see. Taking a medication is a RISK. So naturally, it is better to assume that the medication is more likely to harm than help when you don't know what it does.

This also speaks to the great divide between doctors and patients in our current medical system: doctors assume that their patients should just rely on their expertise. However doctors get so involved in science that they lose sight of common sense things and get lost in ego-boosting preliminary results, like the belief that the placebo effect resulted in automatically better results for a medication. I don't know how many years it's been pounded into my head, "well, you know, you'd feel better if this was a sugar pill, so I don't know why this real medication isn't working on you..." Well, doc, turns out it's because you were misled to believe just because you have M.D. After your name that means I view you as a Minor Deity. As things really are, M.D. implies Maybe Disaster and you terrify your patients, leaving you at a deficit the moment you show up.

If I could have one wish, it would be to educate the entire medical field about this. We need to wake up to the realities of how I humanely we've been treating patients by keeping them in the dark. We have been willfully inflicting patients to psychological damage as a result of our treatment of them, believing our medical professionals are supposed to be seen as intervening angels, when really they were seen as cloak-and-dagger devils. And as long as we were told that medicine worked a third of the time just because it was called medicine, the angelic myth persisted.

The fairy tale is over. It's time to wake up to reality.

Side Effects: Telling the Real from the Imagined - Wall Street Journal, July 7, 2014

Monday, July 7, 2014

All the King's Horses & All the King's Men

One thing I wish people understood about me is that when I freak out about something, it's not some phantom that my mind has created, some imaginary boogieman, no... If I'm freaking out it's because this is something I've experienced before, some major trauma, where I can see where I'm headed and I'm desperately trying to avoid that fate. I've come by my pessimism and cynicism honestly: that is, I'm not cynical about doctors because it's cool to be cynical about doctors. No, I'm cynical about doctors because I have been let down, betrayed, and permanently injured by doctors. I had youthful optimism once. Now, I am no longer a youth, I am a middle-aged woman and I've been around the block enough times to know that optimism is rarely well-founded.

So what's a girl to do? I could let my cynicism and pessimism turn to bitterness and bile, choosing to see myself as a victim... Or, I can look at things from "the other side of the chessboard." What this means is abandoning my point of view, and looking at my situation from my opponent's point-of-view. In chess it's a way to practice by oneself by literally turning the chessboard around, and playing the game from your opponent's side. In this way, you can see what they're seeing, and get some insight into not only their moves, but how they perceive your moves.

For example, I have a neighbor who is openly hostile towards me for some unknown reason. He's rude, a bully, and is spiteful in so many ways. Now, I could either choose to see myself as his victim, as his attacks are squarely aimed at me... Or, I could view things from his point of view, and that is, all I have to do is show up and his day is ruined. He gets so upset just by my presence, that the one with the power in this equation is actually ME! He's given me power over him to an enormous degree. He's not attacking because he believes he's stronger than me. He's attacking me because he feels weaker than me! I'm not the victim here at all. He is, and he's doing it all to himself. I don't need to do a thing...

So even though no matter what I do I will hurt, and even though I cannot live where I want with the type of people I love... Even though I'm not strong enough to take care of myself, and there are ways in which I cannot be helped at all... Even though I have to accept less from my body, that doesn't mean I have to accept less for my life!! I can learn to live happily at this new pace. I can find new things to enjoy and bring joy into my life. I can make new friends, of quality, who also share my newfound quality of life.

Because I didn't always know what brought me happiness. That was something I had to discover over time. When I was a teenager and was under a period of profound transformation, I had to find new ways of coping, because what I did as a child to cope no longer sufficed. And I had to find new coping mechanisms in college, because my teenaged ways not longer met muster. This happened again after college, and again after 27... I was working diligently towards an entire new set when my life was disrupted by illness. So if I'm completely honest with myself, this type of discontent with my coping mechanisms is not something caused by my illness, it is a regular, normal process throughout my life as I grow and change. The illness limits my choices, to be sure... But my choices would also be limited (in different ways) if I had children. The facts are different, but the feelings are the same. Knowing what makes me happy is an ongoing process, and if I just relax, eventually I'll discover something that will fill me with joy & help me cope.

Yes, the illness changed me in ways I don't like. But life changes everyone in ways they don't like. Everyone experiences pain, despair, heartache, and profound loss. No one is immune. No. One. There is no special reason why I should feel sorry for myself. This isn't a competition for who's got it worst, nor is there any reward for being the most pitiful. I can hang on to my anger, blaming my illness for all my misfortune (which is an easy case to make), or I can realize that everyone deals with misfortune and traumatic loss. This just happened to be mine.

If I'm able to realize that holding on to mediocre I am denying myself the opportunity to find better, then it makes letting go of what doesn't work in my life, and finding the patience to wait for what does... Then the losses aren just losses, but welcomed relief as they are replaced with something better.

Tuesday, July 1, 2014

My Most Fortunate Mistakes

I have done some doozies in my time, let me tell you!! But some of the things I have kicked myself for, repeatedly, have turned out to be exactly the right thing to do, and have saved my @$$ in the long run... I thought that losing Seattle was a mistake, that I was leaving my home... And I was. But that move allowed me the key piece of information that I needed to take better care of myself: that dry air does me better. That allowed me a larger window in which to function, and ultimately got me to the better place I am today.

I have "chronic foot-in-mouth disease," but that opened the doorway to a whole set of new friends I never knew I could have. I though once I had lost the love of my life, and it turned out I dodged a bullet! I mean, there are some crazy twist and turns in life that I never thought could happen, good and bad, but I'll tell you something that has always helped me was a healthy sense of how lucky I am.

Oh sure, I've wine the health lottery in all the wrong ways, but I still have a mind. I still have enough good in my life to build success. I am super high maintenance, but in the most low maintenance way. Really, it is stupidly easy to make me happy. If I could be self-sufficient, the world would be right in so many ways. It's important that I keep the faith until it works out.

Funny thing is, about giving up.... That doesn't mean that you can't start again. All of us get knocked in the dirt a while. It's not about that. It's about making the right decisions, and sticking by the beliefs that make you, you... Not matter what darkness in your life may fall. Be responsible, and the world will reward you. Hang in there, keep trying, and even the mistakes we make can end up being a blessing in disguise.

If we just though about it for ten seconds, we'd realize that the problems we had ten years ago are not the same as the problems we have today. Some have gotten worse, but some have gotten better, and there is something to be thankful for if we think about it long enough.

We are constantly evolving creatures. Heavy weights that used to hang on my heart have been lifted. Not because of any sort of spiritual experience, but just because I got new information that changed my perspective on everything. What I once though was a terrifying experience, I later learned was an act of bravery. Little things, where I though I had failed, but I hadn't. Things aren't always how I see them to be. And that can have terrible consequences, or wonderful ones. And what we think is terrible turns into wonderful and vice versa.

Things change. We change. My concerns at 30 we're not the same as they are at 40, and certainly not the worries I had when I was 20! I *am* getting better and wiser with each stride, even the missteps... Especially the missteps. Because it is only when we are in free-fall, sure that our ass is about to kiss the pavement any second now and we have two choices. The correct choice is NOT "brace for impact." That will leave you stiff, and bones will break. The trick is: RELAX.

Yes, I know unintended free-fall is terrifying. I know you want to reach out in desperation to catch yourself, but that can cause more damage than just a fall would, if what we grab for is sharp, hard, or unfit to support our weight. It's terrifying to realize the pain of impact is coming. We want to save ourselves from that fate. We want to cling to something that can save us, and can pull down our lives around our ears as a result. (Or worse, other people...) But as long as we try to resist the situation, we're concentrating on denial, instead of learning acceptance.

First, if I relax, I have less chance of injuring myself or others. Second, if I relax, instead of trying to say "this isn't happening!!!" I can instead say, "this is happening, what's my best option?" And sometimes in these terrifying moments, if we can relax, we can see that key insight we need to save our butt from the fire. A lot of times, I can tap into my dancing muscle memory and use my momentum to collapse on the couch instead of the counter, and I count my lucky stars. Other times, I just need to relax through the landing, and hope I don't hurt myself too bad. Still other times, I can think it's free-fall, but it's an illusion, and I'm really on solid ground, not falling at all.


-- Relax. When you know you're going to be reunited with the Laws of Physics in a harsh way, relax.
-- Look on the bright side. When everything is at it's darkest, that's when a candle shines as bright as the sun.
-- Realize that time changes things, and our biggest worries can turn around in an instant with just a piece of information we didn't have before.
-- Forgive yourself your mistakes, and realize that not all mistakes turn out like we think. Life is full of so many surprises, and we could be completely incorrect about what we though we did wrong.
-- Be true to people. This world is hard, and fairness something rarely seen. We should be good for the sake of goodness, because there's not enough in the world.

I'm so grateful for these mistakes... Sometimes it is wonderful to be wrong.

Tuesday, June 3, 2014

[Video] What is a Migraine? #MHAM

This video, made with @AdobeVoice, is a short educational piece on #migraines for Migraine Headache Awareness Month (#MHAM). Enjoy!


Monday, June 2, 2014

June is Migraine Awareness Month! #MHAMBC (late)

 “What would you do if your dream of a totally pain- and symptom-free life, came true?”

First, I would return to work, no question. I would have the strength to work full time, and do an entire second activity full time, with time left over for a social life. It would be glorious. I would start my own business to serve the invisible disabilities community with this extra time (just because I made it out doesn't mean everyone else has), and I would have the resources from my full-time employment to do so. I'd be able to strengthen ties with my family as well, being able to travel to and attend family reunions. I would be able to "come home for the holidays" again and spend time with my parents while they're still here. I would be able to hold my baby niece and nephew, and even have children of my own. 

Without the occasional reminder of how devastating these symptoms are, I would start to forget just how overwhelming and helpless these invisible forces can make our lives. I would forget the dread of knowing Symptoms Are Coming, and how much of a struggle it is to keep afloat of simple tasks. I would slowly forget what it feels like on the inside, and only have vague memories of the problems it caused for me outside. I would still be grateful for every moment, and I would be able to keep calm in the face of great adversity (because nothing in the work world compares to a crippling illness), but the intensity of that gratitude would slowly fade to a consistant joie de vivre. My desire for accomplishment would grow as the long shadow of my disease retreated. 

I would know what it feels like to wake up and be excited about what the day has to bring. I would fall asleep confidant that I will be as capable tomorrow as I was today. Fear of people and of economic insecurity would leave me. I would be capable of fulfilling my duties as a daughter, as a sister, as a citizen, and as a member of the human race. I wouldn't fall over just because of a change in the weather. 

I could enjoy the rain again. 


Tuesday, May 20, 2014

The Insecurity of Chronic Illness

My father once told me that by the time he was forty, he finally felt like he'd "gotten his legs beneath him." Meaning that he finally felt like he knew what he was doing, had this "Life" thing pretty well figured out, and he was able to propel himself forward from his own efforts. I can tell you with a chronic illness, I have no such knowledge. Just because I felt one way on Monday doesn't mean I'll feel the the same way when I wake up on Tuesday. The instability of that makes me feel incredibly insecure, and I know I cannot reliably propel myself forward. I have no legs beneath me, and on Monday, that manifested itself literally. i woke up and couldn't walk.

This wasn't the same as waking up with one of your legs asleep. That happened today because I was sleepwalking last night and fell asleep in a weir position. But yesterday was not that at all. When my leg is asleep, I can still put weight on it and the limb pretty much responds, even though I can't feel much and have pins & needles. What happened Monday included NO pins & needles, the leg wouldn't respond at all, and I couldn't put weight on it, period. I would fall. It lasted for about a half hour and then magically went away. It was terrifying, suddenly not being able to walk for no reason and with no warning. I found out this happens to my Unicorn Sister too. I talked with her more and found out she has Narcolepsy as well!

My body has a will of its own, and that will is stronger than my own. I do not feel safe in my own skin. Who would? I don't feel like I can get my legs underneath me in real life, how could I possibly feel that way metaphorically? How can I feel like I've figured anything out, when the rules keep changing from day to day? My body is unreliable... how can I possibly propel myself forward? Gods, I felt more secure in my twenties than I do now, and I was horribly unsure then! I didn't realize how much I had to be sure of, and now that I've lost it, I realize how much I took for granted when I was young.

It's time to regroup and reassess. My Unicorn Sister and I cam up with an idea, and we're praying it works. I'm going to go see a doctor in Arizona where she (my Unicorn Sister) is also a patient, and see if the doctor can draw some conclusions based on similarities between us. Not being able to walk was terrifying. Knowing that my Unicorn Sister has also experienced this symptom and the Narcolepsy.... since it's going on with both of us and we both have the same rare autoimmune disease, there's got to be some breakthrough we can manifest having both of us seen by the same doctor! My appointment is in the end of November, however, so there's a long wait for any answers.

In the meantime, I must take what life dishes at me and deal with it the best that I can. It means that day-to-day I have no idea of what I'm capable of: sometimes I'm an amazing, shining star, sometimes I'm the tail light of a septic truck that flickers on road bumps. I can't tell you which day is going to be which. I can only do my best when I am able, an rest up when I am not. I really don't have a choice in the matter! lol

Sunday, May 18, 2014

Medical Bullies

I woke up today and I couldn't walk. It made me realize something. I'm being bullied. Despite my current apparent kidney health, I am not wrong that there's a fatigue issue going on, one that is clinical in nature. And I was never wrong about my symptoms that led to the diagnosis of Autoimmune Hypophysitis. What I'm experiencing here is a form of gas-lighting. They're telling me, "Yes, the results are abnormal, but we think the cause is the medication, not a disease..." Really? You think I was perfectly healthy, went on a medication, and now I'm sick as a result? Hold on here, that makes no sense.

I was first diagnosed by a Cardiologist in California who was looking for the exact *opposite* result in my bloodwork, because we were looking for causes of tachycardia. That was reaffirmed by an Endocrinologist who DID NOT believe I had what the Cardiologist found. My adrenal glands shut down in the presence of the stimulating hormone. I wasn't just low, my Adrenal Glands responded in a way that they should not. Additionally, he also didn't think my pituitary was involved, but agreed to test it because, and I quote, "I was wrong the first time!!"

I remember at first, I didn't want to be on prednisone, and voluntarily took myself off it for a month, but my endocrinologist showed the labs to me. She said you need to be on prednisone in no uncertain terms, and if not, you're risking your life. This was after all nerve blocks to try and control my migraines had ended, when I was receiving care in Everett Washington, before I had any pain relief from the headache clinic.

It was reaffirmed in Seattle again when I moved south and picked up a new Endocrinologist. There was a time under her care when I knew I was over-medicated, too, and again, voluntarily came off my prednisone. This time, however, the labs came back normal. It was then that we scheduled me for the neuroendocrinologist, or what I like to call a specialist to the third power (or specialist3) because you have to go through two layers of doctors to reach this guy. We knew that there was really only two reasons for hypopituitarism to go away: 1 - childbirth (and I've never been pregnant, even when trying - a clue itself) and 2 - autoimmune.

We had an MRI taken in this time, right as I began to get symptomatic again: I was nearly fainting after standing and just taking a few steps. This was a harsher version of when I first showed symptoms, when I was nealy blacking out from climbing two sets of stairs. Stair-master exercise machines were the worst. Just a few seconds on the machine, and my vision would tunnel, colorful or black & white spots would appear in my vision, and my whole body would start to go limp. This time, just three steps would bring me to my knees. The MRI came back "dirty" --- there was clear indication of lymphocytic invasion of both my pituitary gland and stalk. We finally had our smoking gun.

Why these people don't want to believe me now is baffling, but I need to stand my ground. I see my new GP next week, and hopefully she'll take over prescribing my prednisone, because my old GP refuses. How they can look at an abnormal result and prior evidence as to the cause of these abnormal results and say, "Nah, you can come off all your medication and you'll be fine!" is criminal to me. To threaten my life in that way boggles my mind.

I had reduced my medication the past few days to see if I could go off long enough to be able to have the tests show this again, but when I woke up this morning and my left leg didn't work, I decided against this course of action. It was the strangest thing. It wasn't "pins and needles" as you would feel if you'd lost circulation that way. No, there was just no feeling, and if I tried to put weight on it, I just fell. It collapsed underneath me. It was the most terrifying experience I've had to date.

I need to be at my medically best when I see this new GP. I have a new symptom which warrants extreme concern. I am not a happy camper at all. I am not well, but we can figure this out and manage it. However, I need physicians who are on my side and helping me search for answers, rather than denying the reality that is in front of them and placing obstacles in my way!

Since it's not kidneys, there should be something we can do to manage the fatigue. Since I'm experiencing new debilitating symptoms, we need to look at what else is going on in my body.

HEAVENS WORK WITH ME, PLEASE!

All I want to do is be a constructive member of society. Is that too much* to ask?

*Yes, quite possibly.

These medical bullies need to get gone.

Friday, May 16, 2014

Patient Non Grata

I wish I could say I did something wrong. I wish there was something in my behavior I could correct. I wish there was some sort of misconduct on my part for which I was being reprimanded. But there's nothing. I've done everything right. I've followed all the instructions. I've done everything I was told to do. Yet my GP is still washing his hands of me, and has no one he knows who does Internal Medicine and takes Medicare that he can refer me to.

Really? You work in a low cost clinic, and you know of absolutely no one else in the entire state that also does what you do? You suddenly completely forgot how to use Google? Excuse me while I find that a little difficult to swallow.


Meanwhile, my test results continue to come back abnormal, only to then have the doctor tell me, "There's nothing wrong here. You should stop taking your medication. That's what's making you sick."

Really? Because I remember being a HELL of a lot sicker BEFORE I was put on medication. And bakc then when the test came back abnormal, they put me ON medication, and --- you're not going to believe this --- I felt and got BETTER! Holy $#!+, what a concept!

I don't understand what's happening here. I don't dare leave this state because this is the first time in 10 years that I have pain & nausea control. But now it looks like I may be screwed anyway, because these people don't want to see or treat me.

I will call a highly-ranked GP tomorrow and see if she'll take over care, but I'm reasonably terrified.

Mother of Gods, what am I supposed to do?

Wednesday, May 14, 2014

The Loneliness of Illness and Pain

This is one of the best blog articles on #chronicillness I have seen in a long time. Written by Wayne Connell, Founder and President of the Invisible Disabilities Association (IDA), it starts out with phrases commonly heard by folks who are disabled when others find out about their status: “You’re lucky you don’t have to work!” “You’re just giving up!” “You need to get out more!” Things that still make me wince just to read them. Things that still very much hurt my feelings when I hear them today, even though I know them to be patently false. But that's never stopped anyone from saying them.

Wayne continues with a hypothetical situation asking people which is better for a broken leg or surgery: a going on a hiking trip, or using crutches & rest? It may seem obvious what the answer is, especially based on our own behavior: rest and crutches are the better idea. Otherwise, as Wayne explains, there would be mountain trails outside of hospital rooms instead of wheelchairs & gurneys. "When dealing with a broken leg, it [usually] heals and the person returns to life as usual." (Read the rest of the article here: http://usodep.blogs.govdelivery.com/2014/05/09/the-loneliness-of-illness-and-pain/)

But people who have an illness that hasn't healed, that can't heal, who are in the very throws of illness at this very moment are treated as if they're not sick at all.

On the other hand, for many living with ongoing illnesses, “as the illness progresses, [people] must adjust each day to the disease, sometimes severe, sometimes in remission, and always present. The sense of health and vibrancy is, at best, diminished, and at worst, lost,” wrote Jackson P. Rainer, Ph.D., a leading authority on grief and loss.

Another thing people think is that because we the patient are still having daily issues, that means that we haven't been about to "move on." Their thought is, "Wow, you have that and you're still alive? That's amazing. Don't you see how that's amazing? When you talk about your illness, you're right... but the only person you're hurting is you. I'm just so glad you're alive and I think we should focus on that. You just have to believe you can get better! You know just because you get a diagnosis doesn't mean it's a death sentence. You shouldn't believe everything your doctor tells you. I believe you can beat this!"

And when you try to explain that they've misunderstood what's going on, it only sounds like an excuse. They, of course, can see that you're still unhappy, but they've now convinced themselves that the reason for your unhappiness is a consequence of your own stubbornness. They then have a perfect justification for stepping back, or walking away, guilt free. We're only doing to ourselves, right?

They can't imagine a world where you get sick and it never goes away. They can't imagine not having control over simple things like going to the bathroom. After all, they mastered that as toddlers. Adults don't have those problems until they're old and decrepit anyway, and by that time, who cares? They fast forward through all those medication ads. They know we have hundreds of drugs to treat the same thing and even drugs built just for his pleasure. We're in the golden age of pharmacology!

Every medical riddle has an answer and a treatment that solves the problem---I watch House! The only people who keep having problems with their disease are people who aren't following their doctor's instructions and doing all they can do to maintain a healthy lifestyle! I don't need to feel upset about this at all. God is in heaven, and all is right with the world. Look at all these people who work hard and beat cancer!*

They can't imagine how little medical science actually knows. They can't imagine that their doctors probably have never had a class on pain; the chief medical complaint everywhere, always. They can't imagine there are symptoms for which we have no good treatment, no good source of relief for patients at all. They can't imagine that you could have possibly exhausted all options available. There aren't people in wards waiting for the medical breakthrough that will save their lives. We're past that!

Oh, but we aren't.

And what they cannot imagine is that our problems today might actually be problems from our success! Yes, we're not dead. But achieving that can leave us more scarred and more crippled than before our near-death experience. My experience with MRSA is a perfect example:

I got a surgery to end the 4.5 year migraine. That surgery caused an antibiotic-resistant version of staph to infect my face. I lost a good portion of the skin off my chin and on spots around my face. I still have the scars, some of them show up as white dots on my face. My chin is covered in tiny scars and it feels funny when you rub your hand over it.

That infection nearly killed me. The antibiotic left my veins so inflamed that they almost had to put a line into my heart to continue to deliver the antibiotic to me. That inflammation destroyed the small fibrous nerves that exist throughout my body. Anywhere the antibiotic touched, it burned. It burned the infection out of my system, and it burned everything else, and especially those delicate little nerves. Those don't grow back no matter how much yoga you do.

What fixed the migraines only moved the pain to other parts of my body (most conspicuously, my hands and feet) and left me crippled for another 5.5 years while we figured that one out.

Now that we've figured it out and have it manageable to a reasonable degree, an entirely unforeseen development has occurred, with no known source. It is not connected to anything that we already know of, because this wasn't in the forecast! And since we don't know the source, I can do nothing to stem the tide. I must now return to my doctors to start the investigative diagnosis process all over again.

It's very much like people's misconceptions about cancer, as I *'ed before... I'll leave it to XKCD to explain this one, as they did it best. (Used with permission.)


When we complain, we're not complaining because our illness is something in the past that we keep dragging into the present. No. For so many, it's something that's right here, right now. Not every symptom in the world is controlled, and as you can probably tell from some of those ads, many cause side-effects as bad as, if not worse than, the condition they're trying to treat! So if someone has to go to those lengths do try and manage what they have going on, don'cha think it might be... Oh, I don't know... Serious?

This is not to badmouth the people who really do mean well. However, those people are generally easy to spot. They say things like, "Wow, I didn't really consider that. This is new information for me so when you put it like that... You've given me a lot to think about, I'll have to take time to mull this over." Or even, "I really am trying to help, but this isn't easy so I don't have any quick answers for you." These are all reasonable answers. I already knew we were playing "Life" on "Level: Advanced" and my medical doctors are already at their limits, so I can accept that.

So please, if you hear that someone has gotten sick and can't get better, try blaming the disease and supporting the patient, rather than blaming the patient and supporting the dis-ease. We will be eternally grateful, even if you don't have any answers for us besides, "Man, F*** your disease." Profound respect for what we're going through is worth so much, that sometimes that expression of sympathy alone is enough to make us feel better.

Thank you for understanding.