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.

The difference between #acceptance & #approval

Back when I was convinced I was an alcoholic, (15 years sober until my doctor proved to me that I could do what Alcoholics Anonymous calls "controlled drinking", i.e., I really can "take it or leave it") I studied the Big Book of Alcoholics Anonymous like it was my Bible. I was dedicated, and I was going to do sobriety "right" (what ever that means! Lol). My edition of the big book is the 3rd, so my copy it's page 449, newer additions will be different. But it's a story by a doctor/pharmacist (yes, he was both!) and it has a really great passage on acceptance. It goes like this:

Page 449 (3rd edition...)

And acceptance is the answer to all my problems today. When I am disturbed, it is because I find some person, place, thing, or situation – some fact of my life – unacceptable to me, and I can find no serenity until I accept that person, place, thing, or situation as being exactly the way it is supposed to be at this moment. Nothing, absolutely nothing happens in God's world by mistake. Until I could accept my alcoholism, I could no stay sober; unless I accept life completely on life's terms, I cannot be happy. I need to concentrate not so much on what needs to be changed in the world as on what needs to be changed in me and my attitudes.

When I first read that, I thought: D'oh! Busted.... That is *exactly* what is wrong with me and my life. and that's what originally brought me to choose sobriety, even though at the tender age of 19, I wasn't even legal to drink! I even went so far as to go through an out-patient (because I volunteered) sobriety program called Edgewood in St. Louis! But when my health problems started, it became very clear I couldn't say no to drugs anymore.

Now, A.A. Has a number of publications, and one of them is called Living Sober and in there is a story about an alcoholic who had to have surgery and was afraid of taking pain pills (like me). A.A. gave me an easy to follow rule: if you're in pain --- take the medication. If you're not in pain --- DON'T take the medication. Easy, right? Problem is.... Pain can become it's own disease and when pain goes chronic, using short-term pain killers is actually what you *don't* want to do...

But back to acceptance. In my many travels, I actually got to meet Dr. Paul O. before he died, and at the time I was dealing with migraines and I was being treated like a drug-seeker, even though I was open about my recovery, had a sponsor, was holding meetings, the works! I told him, I just can't do it.... I can't forgive these doctors for how they've treated me! How do I accept this? I'm being tortured by chronic pain!!!

That's when he said to me: "Acceptance is NOT Approval."

See, if I'm driving down the road, and the car in front of me slams on it's breaks, I may not Approve of them doing that.... But if I don't Accept that they've slammed on the brakes and act Accordingly, I'll end up in a wreck!!!

So it really is a choice, my attitude. But that doesn't mean I have to like the choice I'm given!!! I can accept my illness, but I don't have to try and Enjoy it! Lol

That's just nuts!

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!

Thankful Thanksgiving

This year has seen so many wonderful things for me, I can't even begin to describe. I've been able to do physical therapy, and all my doctors have been able to see great progress. My disease has a cure, even if we haven't been able to get access to it yet. I've been well enough to help take care of my step-brother, himself, a disabled Vet. I was well enough to cook our entire Thanksgiving feast, something I haven't been able to do in years, and though I was exhausted afterwards, I felt whole, having been able to complete my part in our annual traditions.

That's one thing that is really lost when one becomes disabled---our ability to participate in events that help us feel the flow of the year. When the flow of our lives is interrupted by a disease, what used to be the change in seasons is now a change in doctors and medication. What used to be the delicate passage of time has become the ticking off of days in a prison, never knowing when, or if you'll ever be set free. When life becomes about symptoms and self-care, spending energy on holidays can be impossible. It's easy to become detached, and feel outcast. Because we can't participate, we lose touch with the sense of joy we used to get.

It can be even worse for caretakers. They can feel caught in the middle, wanting to have fun, but feeling guilty for being well, and being able to enjoy these times, while their sick loved one cannot. They may lose their own sense of joy in the holidays because diseases don't take a vacation, so neither can they. They may try to go out and have fun, only to worry the entire time that they're away, so that going out and trying to take a break can be even more stressful than staying at home (at least you know nothing's going wrong, then).

And I was going to write some Pollyanna-ish things about, "If you can't do what you love, do what you can instead!" But honestly, that can make me more depressed than just trying to pass on the holidays altogether. Doing holidays half-assed, that is, not being able to do the things I used to do, but doing something close to it, to try and recapture that old feeling, just ended up being a reminder of why things sucked now. It was honestly much easier to just let go of the holidays altogether. That was something that happened on planet wellness. I didn't live on that planet anymore.

Here on this new planet, we didn't have winter holidays. It just got cold, you got a break from appointments, and you had to be really careful about stocking up on medication because the pharmacies closed on weird days. Presents aren't given, because no one has any money for anything extra anyway. Time is spent, instead, on studying the new changes to Medicare, which require a degree in government-speak before you can understand them.

Winter was the time when other people spent as much time indoors as me.

Now that I'm starting to make visits back to planet wellness, I can say that it's really good to be home again. I'm not going to be "here" for Christmas yet, but my doctors and I are working on it. And yes, I'd rather it be an either/or thing. I don't want it to be the "this is what I can manage" holidays. I either want the holidays the way I want them, or I want to skip them entirely. If I try the middle road, it hurts my heart more. I "miss out" more if I try to do the holidays in a way that's new, because I can't manage tradition health-wise. I miss the holidays less if I don't participate at all.

Of course I want to enjoy the holidays. But if I can't, then I'd rather do without than be teased by visions of what I used to be able to enjoy. So my real suggestion? If you have to have holidays, find a culture that's completely different and start following their holiday traditions. (There are a lot of traditions from Asia that celebrate the seasons in very beautiful ways.) If you are religious, and following the Holy Days is important to you, contact your local church. There are usually volunteers who will bring the ceremonies to you, as an act of service, if it's too difficult for you to make it out.

Now, for caregivers, if you still want to go out and enjoy the holidays, without the baggage of guilt for leaving your sick loved-one behind, my suggestion is: take a "Guest Book" with you when you go out. When you talk to folks, ask them to take a moment to write some well-wishes to the person you had to leave at home. When the party is over, you can bring the Guest Book home for them to read, to let them know that people were thinking of them, and that they were missed. Bringing home a doggy bag with samples of all the goodies from the party is also a good way to help the sick person feel included. As they read, they can sample the treats, enjoying the quiet after-party with just the two of you.

By asking other folks to send their well-wishes, you also strengthen the sick person's ties to the community when they can't go out themselves. You're doing them a service by making sure they're not forgotten at the celebration. This means a lot to us. We feel included, even though we're not able to be there ourselves. It's easy to feel left behind, even if the cause of our not going is no fault of our own, it can feel like exclusion. It can feel like people don't want us around, even if that's far from the truth. A Guest Book is solid evidence against these fears. It shows us that our presence was desired. It shows us our value to the group, and also reminds the group that we still want to be around, even when we can't. (That helps keep future invitations coming.)

I am thankful that I was able to enjoy "Turkey Day" in the way I like. I had missed it. But I'm also thankful of the path I chose when I couldn't enjoy the day like I wanted. It helped me survive the heartache.

I hope you are staying strong through this time, whatever path you choose for yourself.

Guide for Talking to the Chronically Ill -- Call for Submissions

How many times have you heard from your healthy friends and family that they want to show support for you, but "I just don't know what to say..."? Have you ever wished for a guidebook that you could hand to healthy people, so that they would know what to say? Well, I am working on exactly that.* And I would like your help.

I want to teach healthy people how to communicate with people with chronic illness. I want to teach them how to be brave, how to be supportive, and what we want to hear. If there is someone in your life who is having trouble knowing what to say, I'd like you to write me and tell me what you what to hear from them. The more stories submitted, the more options we can present them.

What would you most like to hear from your family?
What would you most like to hear from your friends?
What are some of the best supportive comments you have heard?
What are the worst things you've heard?
If someone wanted to approach you to discuss your condition, how would you like them to ask?
What do you wish people understood about chronic illness in general?
What do you wish people understood about your chronic illness, specifically?
What do you struggle with most, as a result of your chronic illness?
Do you want people around you to help? If so, how do you want other people to offer assistance?
Other thoughts? Comments?

Please say whether you would like credit, or whether you would rather remain anonymous. Feel free to submit previously written works, blog post URLs, etc. (along with permission to reprint).

Send your submissions to: pamc.writer(at)yahoo.com
Include your NAME (or Anonymous), CITY, STATE/COUNTRY
Your DIAGNOSIS(es), HOW LONG (you've been diagnosed), whether you're DISABLED (and DATE)
(Include links to your blog, Twitter handle, etc., if you wish)

Submission Deadline -- December 15th

*I've been gone from here working on this, and other fun surprises coming later this month!

Invisible Illness Week - Post # 300!

It's the close of Invisible Illness Week, and this here is my 300th blog post! Can you believe it? Yeah, I was pretty impressed when I noticed it. That's an awful lot of writing on dealing with invisible illness. But if you have an invisible illness, you know that I could easily write another 400 blog posts on what it's like. Because, when you get an invisible illness, it transports you to a different planet, with new rules and new realities, that other people just don't get. I didn't get it today for my brother.

My brother has vaccine illness from the anthrax shot, and on his planet, a storm was brewing. I, of course, couldn't see it. I don't live on that planet. Some of the things about our two planets are similar---I know that when I feel bad, he feels worse and will need more rest. He gets the same weather triggers I do, and we're often knocked out at the same time. But this evening, all was fine in my world, when everything was not right in his. I was able to get him some emergency supplies (chocolate), but he still got hit with an attack that left him shaking and vomiting.

I made him promise to never cut it that close again, because I hated seeing him like that. But in his defense, he said, "I've never had anyone respect my illness before." And that just broke my heart. I know what it's like to not be believed, not be respected, and being told that you're making it all up for attention. It's soul-crushing... because first you've got to convince folks, no, you really don't feel well, and that's all while you really don't feel well, so you're not your best at explaining things anyway! It's a moral kick in the gut when you're already feeling vulnerable and at the mercy of others.

Then, if it's doctors that don't believe you... well, they're the gatekeepers to most all things health! If it's not a skinned knee, a mild headache, or a cold/flu, you're screwed when it comes to fixing your problems yourself at home. And when it comes to getting a correct diagnosis... it can take 7-10 years to get a correct diagnosis when your doctors believe you. It can take agonizingly longer than that if they're antagonistic towards you. No one likes an angry nurse. An angry doctor can poison an entire institution against you.

And, of course, having someone on your side who believes you, and has seen your trouble first hand, can make all the difference in the world. Despite what the OSD says about the Anthrax Vaccine, "U.S. District Judge Emmet G. Sullivan ruled December 22, 2003 that the Department of Defense must stop forcing soldiers and civilian employees to get the anthrax vaccine, saying the vaccine is an experimental drug not licensed by the FDA." But the DOD back-ended their way around that by having the FDA call it safe after the fact, even though Attorney Mark Zaid cited research from an FDA panel in 1985 -- which was also mentioned in the FDA statement Tuesday -- that said that "no meaningful assessment of [the vaccine's] value against inhalation anthrax is possible," Zaid said. Based on the research I was directed to by the CDC, there have only been two human studies, and one of them showed severe side effects compared to controls. Um.... There have been drugs, good drugs (Demerol, for example), pulled off the market for far less! And yet there's this whole web site by the Offices of Strategic Defense that are telling me, oh, no... it's just fine! No one gets sick from this! Really?? I found "one study shows that the incidence and severity of side-effects are significantly higher with the killed vaccine than with the alum-based placebo (overall odds ratio 0.16; 95% confidence interval 2.38-27.17)." [Source: http://www.ncbi.nlm.nih.gov/pubmed/9682332] Just fine, eh? Would you like to sell me a bridge too?

My brother deserves a chance to be well. I'm gonna work my pants off to make that happen.

High Park Fire Clothing Drive

I have a friend, and his parent's home was completely destroyed by the High Park Fire. This is an ACTUAL photo... it shows you what fire damage is like, when it burns a house to the ground. They lost everything. But in their true, generous natures, they're not worrying about themselves. They're holding a clothing drive for fellow victims of the fire. Some people only got out with the shirts on their backs.


You can send clothing donations directly to:

Little Poudre Family Clinic
3817 W County Road 54G
LaPorte, CO 80535-9360
1 (970) 472-2001
For the next 3 months, all proceeds from sales at my little shop will go directly the clinic, to help with other items. You can buy a sweatshirt, donate that, and know the money from the sales is ALSO going towards the fire! ^_^

#NMAM Name That Tune! - You get what you give

For today's migraine awareness challenge, I'm to "choose a theme song for Migraine disease or your headache disorder. See if you can find a YouTube video of it for your blog post." I always have the hardest time picking songs that have to do with my illnesses. Music is my escape, my way to forget everything that's going on around me, and just get lost in the flow of the harmonies and rhythm. Migraines took one of my favorite activities from me: clubbing. So to give my migraines or my disease a song is almost... unholy. I turned to my friends for suggestions, but still got stuck. That was, until I put in a CD I created when I was in the midst of my migraines... my song is "Get What You Give," by the New Radicals.


Here are some of the lyrics:

But when the night is falling
You cannot find the light, light
You feel your dreams are dying
Hold tight

You've got the music in you
Don't let go
You've got the music in you
One dance left
This world is gonna pull through
Don't give up
You've got a reason to live
Can't forget
We only get what we give

To say that my migraines have made me want to give up on life is an understatement. I cannot tell you how many times I have just dreamed of it being OVER. No more worrying, no more trying to hold on, no more sitting, curled up in the bottom of the tub, World War V playing out in my head, wondering how there can be so much pain in the world. Surely, no one has done anything bad enough to deserve this, and I'm no where near the level of a mass-murderer, so why does it have to be me that hurts like this? Such questions would no longer beg for an answer. I'd be gone, and there'd be no more to it. But then these lyrics come through...

You feel your tree is breaking
Just then
You've got the music in you
Don't let go
You've got the music in you...

My migraines disabled me. They stole a decade of my life, and took away even my most basic abilities to take care of myself. I've felt worse than worthless... I've felt like a drain and a detriment to those around me. And yet, when I put in this song, even if I'm screaming the lyrics through clenched teeth with tears streaming down my face, somehow, the message still get through...

Don't give up
You've got a reason to live...

I didn't know what my reason for living was at that point. I knew it had to be for more than just suffering. But I also knew that if I gave up, I'd never be able to find out what that reason was. I knew that if I didn't ride out the dark times, I'd never make it to the light.

"Fly high
What's real can't die
You only get what you give
You gonna get what you give
Just don't be afraid to live"

I got this email the other day and it just broke my heart. "How do you do it? I can barely walk. My thighs won't stop hurting. My hip joints won't stop hurting. The NSAIDs only dull the pain, and they tear my tummy and intestines up. Nauseated and cramped. Can't sleep. Loopy and head-achey from lack of sleep. Can't concentrate. Moods swinging in spite of my lithium and zonisamide. Just want to cry. How do you f***ing do it?"

Let me tell you, some days, I don't. Some days, I do end up a horrible lump of screaming worthlessness. I can do nothing except concentrated on treating one wave of symptoms after the next. The whole world disappears from around me and all I have is my symptoms. There is no quality of life. Life is hell and the best thing I can do is get through. Simple tasks that other people take for granted become nightmare situations. Trying to get from where I am to the bathroom and back is like mountain climbing. Standing on my feet, long enough to feed myself, is like withstanding a prize-fighter cage-match. There's nothing graceful about it. I just try to keep going... white-knuckling my way through the minutes, one after painful other, until I feel better. Sometimes, it's more minutes than I think I can handle. But I keep going, regardless of what I think. I hung on for the last 60 seconds... I can hang on for this next 60 seconds. Repeat, repeat, repeat.

Don't give up
You've got a reason to live...

Chronic pain is soul-stealing. I can't tell you how much I've cried over everything I've lost. I can't tell you how much I've cried about the bitterness of the wisdom I've gained. There shouldn't be this much pain in the world. It shouldn't be able to last so long. And it breaks my heart that I have this in common with anyone else.

But...

If my suffering can be of some good... If my suffering can help ease the suffering of someone else... If I can be there for a friend who feels lost, or for a stranger who feels alone... that's a good thing right?

Don't let go
One dance left
Don't give up
Can't forget

I've got a reason to live.

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

Mental Health Month Blog Party! Recognizing Good Mental Health

I know I said I was going to to a Twitter & Tumblr Roundup today, but I completely forgot that today was a scheduled blog party (#mhbogday) for the American Psychological Association! Their challenge: How can you help people recognize the importance of good mental health, overcome stigma, and seek out professional mental health services when needed? Well, first off, I think that mental health is something we shouldn't just consider when it's needed. Mental health is like physical health. We all participate in mental health exercises, we just take most of them for granted. We can enhance our mental health with training and guidance from professionals, no matter what condition we're in. And most people have a "non-serious" form of a mental health issue, and manage it successfully all their lives. There is nothing about mental health that we need to be ashamed about.

Like physical exercise, most people get their mental health from regular daily activities. We engage in routines and rituals that help calm us with their familiarity. We do our morning routine before work, we check off each item in our routine as we complete it, we head into our day knowing we have started off on the right foot by doing all we're supposed to do. This process is so unconscious that we don't even notice it. But when our morning routine is upset, when there's some emergency that interrupts us, boy can we tell in our mental state! Things feel discombobulated, we feel out-of-sorts. Our day moves forward, but we're a little on edge, because our morning mental routine was thrown. We become aware of how important this habit is to our mental health.

Similarly, rituals like birthdays or going to worship, also help us feel a sense of normalcy and a connection to the flow of life. We take these things for granted when it comes to our mental health, when we engage in them successfully. But we notice how much they help our mental state the moment we can't participate. Being too sick to enjoy a birthday, or missing mass that we regularly attend, can upset us deeply. This makes absolute perfect sense! We look forward to these activities! Marking milestones helps ground us in a sense of accomplishment; they remind us of the BIG picture. Rituals like worship and holidays bring tradition and the past into the present; again, they remind us of the bigger picture. These things comfort and console us. When they're present, they help our mental health. When they're missing, we feel it.

As with physical exercise, we can add mental health exercises to our lives to help bolster our overall mental health. Professionals can help by teaching us new techniques and giving us new tools that we can then use in our every-day lives. It doesn't matter what shape we come into walking through the door, they can help improve our mental health. At the very least, validation from the professionals that we're doing well is benefit enough! But what is true of most people (myself absolutely included), is that we've grown up the best we can, but we've picked up a few issues along the way. We may have gotten them early (like childhood), or we may have gotten them through just trying to survive life (medical trauma, Katrina, 9/11, death in the family, victim of a crime). There is no such thing as "battle hardening." Eventually, life gets to everyone. There is no shame in this. And mental health professionals can help us mend the areas of our life where we are wounded in the soul.

Mental health issues can be no big deal, like a fear of spiders. That's not to diminish anyone's fear of spiders! But a fear of spiders can be managed by avoiding them as much as possible, not watching films that use spiders as a theme, having your house or apartment spayed with a chemical barrier, etc. A "serious mental health illness" is a legal term (from the Department of Mental Health and Substance Abuse Services is in the link above), and basically means severe impairment. This affects less than 5% of the population. Most people who use mental health services, like people who use physical health services, do it for a condition that is manageable. Yes, flares can happen that upset the regular flow, but on the whole, the symptoms do not interrupt life. Non-serious mental health illness is just like chronic physical illness. Most people have it, and you'd never know it unless they told you. It is nothing to be ashamed about.

Me personally? I've mentioned here that I have PTSD from my medical experiences. I can have panic attacks trying to see a doctor. It's nothing personal: I don't like doctors. I've been treated horrifically, and I've nearly died twice: once from an adrenal crisis when my blood pressure bottomed out, and second, from a MRSA infection following my surgery. It would be abnormal to go through those situations, and not have it affect your mental health. So, yeah... I'm a little nuts. I'll own that completely.

I also have very rapid-cycling hypomania and depression as a regular function of my migraines. That's what happens when your body dumps its supply of serotonin from the brain and blood. The only thing I can do is hold on to the best of my ability until it passes. I have symptoms like a visual aura, and ways to watch my behavior, that let me know when these moods are coming on. I have tools I've learned, and management techniques I've picked up (never go shopping when in hypomania---everything looks like a good idea!) to keep me safe. I'm on a long-term SSRI medication (#headmed) that works well enough, but it certainly doesn't do a complete job. Hopefully Big Pharma and science will come up with some better answers, soon. Until then, I manage well enough, and things have gotten much better since I got pain control.

We are making amazing technological advancements in our understanding of the brain, and how it functions. From this, we are learning more about all ranges of mental illness, from the mild to the severe. Mental illness is nothing to be ashamed of, whether you were born with it (and therefore had no choice in the matter) or picked it up along the way (like a bad flu or a broken bone). It's not a sign of weakness. It's a sign of survival. It's the wide range of normal, human behavior. Our mental health is like our physical health---and we should take good care of ourselves! This includes check-ups with a doctor (even if it is just to tell us we're doing fine). We can raise awareness, and take away some of the #stigma, so that people who need help, aren't afraid to get it. Be proud of your mental health! We all have scars...

How to fake having a real life

So there you are... a good health day has actually happened on the same day of a nice social event you want to go to. You dress up all spiffy, get your game face on, and head out to the party. You get there, everyone is talking and making chit-chat. Suddenly, someone turns to you and asks you, "So... what is it you do?" PANIC TIME! Do you let this stranger in on your world of health problems? They might look at you like you're contagious and walk away, or possibly worse, start giving your unwanted advice! Healthy people want to talk about your job (which you may not have), hobbies (which you may have had to abandon), and interests (which may be totally health-centered because you're hunting desperately for answers and solutions). What do you do?!? Well, one way to get through is to fake it. In this article, I will discuss three ways to talk about our health that make it seem like we have a real life.

1) Act like you're a volunteer.
In this instance, think of yourself as a volunteer forwarding the Grand March of Scientific Progress: "Well, I'm involved in health research looking at the long term effects of [name one of your medications] on patients with [name a related diagnosis for the medication]." Now doesn't that sound a lot sexier than, "I deal with nausea all day for which I take phenergan." They'll be fascinated, even if they have no clue about the diagnosis or medication you've rattled off. They'll want to know more: "Oh? What does that involve?" Don't lose your cool. "I meet regularly with doctors as part of a long-term follow-up studies." or "I take part in post-clinical trials. We discuss medication side-effects and other patient issues." Both answers say that you're a study participant. Technically, this is absolutely true. If you have problems with a medication, doctors will report their findings. It doesn't matter that you're a patient as part of that process. Let them guess that you're doing this out of the goodness of your heart. But they'll probably be a bit curious: "Do you actually take the medication?" Just smile with confidence and say, "Oh yes, but it's all under the close supervision of a doctor. And if it's for the advance of science, I don't mind the risk." Now you sound noble and brave.

2) Act like you're a professional.
For this one, you're not trying to impersonate an actual health professional. Rather, consider your experience as a health patient in a professional light. Talking to other patients online? That's networking. Blogging about your experiences? That's freelance online journalism. Let's take a look at that dreadful question again: "So what do you do?" That question can be followed-up with something like: "I work with outreach programs for patients suffering from [name your diagnosis] in online communities." Which translates from: I greet folks online when they join the health board I'm on and make them feel welcomed. If the party-goer wants more information, you can say something like, "Part of it includes patient education and patient empowerment... Helping people find online resources so they can then help themselves... That sort of thing." Which means: I share with people about our symptoms and point them to cool websites I've found. If they press you for details, you can say something like, "One common issue among [diagnosis] patients is [symptom]. We deal with this by taking a hands-on, team approach leading patients through self-care processes they can do at home. Sometimes we're able to recommend possible treatment courses they haven't tried that they can bring up with their doctor." Which means: I talk to other patients directly (online) and we talk about self-care we can do at home. We exchange ideas about stuff we have heard of and/or tried. Now all that talking on Facebook and in online communities sounds glamorous and self-sacraficing.

3) Act like you're an activist.
If you do anything involved with signing petitions to get the government's help with health care, you can say: I'm involved in political activism for health reform. When they ask questions, you can tell them about the challenges facing patients with your disease, and about the petition you signed. It always helps to do your homework on what you signed so you can easily talk about the details. Know what the goals of the petition are, who the sponsors are, and how many signatures are currently on it. "I checked quickly just before I came here, just to see how we're doing, and we're up to..." sounds very pro-active and high-minded. Look up other political activity around your disease, even if it's in other states. It sounds very cosmopolitan to be able to say, "Did you know in Florida they're addressing this by..." Or even more worldly still, "In Germany, they're looking into...". It's also great to be able to mention a celebrity who has your condition and the kind of things they're involved in for your disease. You can also look up news stories related to you disease, so you can say things like, "There was an article in the New York Times just the other day on..." Google is a wonderful tool. Now you sound informed and well-read.

So there you are! Three ways to fake having a real life, even if most of your time is taken up dealing with symptoms, doctor's visits, treatments and other god-awful necessities of a chronic illness. I bet you didn't realize your life was just that cool! Seen from the proper perspective and framed in the proper way, you too can make this look awesome!! Healthy people will never know the difference. (Unless they get wise to this article. So, shhhh! ;)

Enjoy the party!

Liebster Blog Award!!

I have been awarded the Liebster Blog Award by Amy Junod at Falling with Grace. She deals with Sjogren's Syndrome, but more than that, her blog deals with the important part of remembering that it's not the mistakes we make, it's our recovery from them that counts. Go check her out!

This award is given to bloggers who inspire you and have less than 200 followers. The Liebster Award takes its name from the German word meaning ‘Beloved, Dearest or Favorite’. I’m humbled and honored to receive this award.

As part of the tradition it is passed along to 5 bloggers that have motivated and inspired.

To accept the award you must:

1. Link back to the person who gave it to you and thank them.

2. Post the award to your blog.

3. Give the award to 5 bloggers with less than 200 followers that you appreciate and value.

4. Leave a comment on the 5 blogs to let them know that they have been offered this award.

I am honoring the following bloggers for their wonderful contributions to the health community.

Deb, over at ABCs of RA blogs about the issues of chronic illness through her eyes as a patient with Rheumatoid Arthritis, a long-term disease that leads to inflammation of the joints and surrounding tissues. (It can also affect other organs.) She also tackles the personal and psychological issues that arise with any chronic illness.

Lori is a new blogger at Carpespero. She's dealing with Stage 3 Non-alcoholic fatty liver disease, and is in the process of trying to get on the liver transplant list. She has amazing strength and talks about some really tough subjects with amazing openness and honesty.

Wendy, at Depression Getaway deals with clinical depression and all the trappings that come with it. I love what she teaches in her blog, how we don't need to be victims of our disease. A very good read.

Jennifer is an incredible Health Activist and blogger at Understanding Invisible Illness. Her recent blog carnival was a huge success. Watch her blog to learn about other blogs, or just for her wonderful insights. She's a gem!

I'm actually not sure how many followers, Gary B. Rollman (Professor of Psychology, University of Western Ontario, London, ON N6A 5C2) has, but his blog is a must follow for any one dealing with pain. He blogs at Psychology of Pain.

When the cards are stacked against you... Reshuffle

I have heard people say time and time again that they don't know how I do it. "That is entirely too much for a person to handle!" I've had one say. And yet to me... I can't give it any credit. When I get taken over by these dire health moments, it's luck and instinct. It has nothing to do with me. I'm just holding on! I'm not clever or wonderful in these moments. I'm just a living organism desperate to keep living. I believe every one of you would do just as well, if not better, in my shoes. You'd get the job done, and probably with less whining and kibitzing! I honestly wish I could shut up about all of this and just live life, but I've been unable to do so. Instead I've turned it into a blog so I can fake that all my complaining is respectable. Funny thing is, I accidently found a way to make it successful. (Sometimes it seems the only way I find success is to trip over it.)

I started this blog because I was miserable. In my mind, I was a wretched thing like something out of a Dickens nightmare. I was huddled in the darkness, alone and doomed. Then the other part of my mind kicked in. This part of my mind was more like the Ghost of Christmas Present, gentle and joyful. She laid a hand on that wretched child's shoulder and said, "Now see here... You know you're not the only one going through this and you know you don't have it as bad as you could. If you want to learn how to do something yourself, try teaching it to someone else, remember? Now think... if you wanted to teach someone else how to get through this, how would you do it?" And like a dawn breaking, suddenly I wasn't in the darkness. I was in a lecture hall. I wasn't dressed in rags anymore, I was in a nice wool suit. And I also wasn't a child... I was an adult, standing tall.

The lecture hall I had in mind was very specific. It was the lecture halls I had when I was a science major at Saint Louis University. There, the seats slope downwards like in a theater, to accommodate class sizes of 300 students. But more importantly in my mind, I'd be lecturing from a point where the students look down at me. Yes, I'm the one lecturing. But I must always remember to present my teachings as a gift or an offering. Because in the end, it's not my lecture that's important. It's what the students can make from it that is.

Suddenly, everything I'd suffered was of value. These weren't just things I had to go through in my life. These were now things that I could use to help make someone else's life better. It wasn't just my loss. It was someone else's gain. And then too, my inability to shut up about it suddenly became a boon. It was no longer embarrassing that I was an unabashed exhibitionist, ready to share the details of my personal life with strangers. Now, I'm an activist, inspiring others to share their experience, strength and hope as well!

How the heck did that happen?

One thing I will give myself credit for is that I refuse to surrender. Sometimes, that's a terrible trait to have, especially when someone wants to be left alone! But like the title of this entry (given to me by my lovely cousin, Jeremy Diakonov-Curtis), I've decided to reshuffle the deck. The things that give me trouble I will use to make some good. The things I am terrible at, I will admit, so that others can know they're not alone. Like any human being, I have my weak moments. And like most people, I underestimate my own abilities and don't give myself enough credit.

It's difficult to be kind to myself in a world where I have trouble fitting in and keeping up. My random yelps of pain and discomfort are disturbing to people. That's not an unnatural response. And I feel guilty when I cause that discomfort in others. It would be as if I had picked my nose at the table. Not good! If you invite someone somewhere twenty times and it's "no" every time, pretty soon, you just stop inviting. It doesn't matter that the 21^st time would have been "yes." So I push myself to go out sometimes, when I know I shouldn't, because I want to keep getting invitations. It's these little, simple things that I fail at, that weigh so heavily on my soul.

Because from the outside, I know you can't tell the difference. I look fine. Stunning, even, sometimes. I don't look like there's all this going on in my life. There's no way to tell that I'm not just irresponsible and lazy. With other sick people, they know immediately. There are experiences that can't be explained, but you can tell by the way they talk and act that they've actually been there. There's a knowing. You can see the dark wisdom in their eyes. It's like a "you had to be there" conversation. Do you get the... And then the... Oh! And sometimes.... And have you ever?.. It's like meeting another member of a fan club, only it's a fandom that no one wants to be a part of!

This illness has made me into someone that I don't like, and that I have trouble admiring. I wanted to take a dream opportunity of being a live-in nanny for a friend of mine and her two wonderful daughters, and I just can't. I'm lucky for the time I can spend with them. I am in no way, that level of reliable, yet---to be able to care for children. It breaks my heart. I don't get to be the woman I want to be. I only get to be the woman I can be. I'm going to have to let what I want, go. I'm going to have to figure out how to be a woman I can be proud of, anyway. And like before, it's going to take seeing my situation in a new way.

So I've got to reshuffle. I've got to change things up to make things work. I can't judge my life now based on how I used to be able to live it. That's just not fair. But, in a way, I don't know that is fair. In a way, the only one who can determine whether I'm actually living up to my potential is me. And I'm not always good at being honest with myself.

That leaves me with only one answer.

FORGIVENESS

I'm going to have to allow myself a lot of mistakes. I'm going to have to eat crow, and worms, and bite some bullets. I'm just going to have to be okay with the fact that I suck sometimes. Sometimes you're an all-powerful wizard. Sometimes you're just a guy in a funny hat. But I've done this before, when I didn't even intend to. I've been able to turn my situation around and find the good in it, even with everything it threw at me. I stopped worrying about me, and started worrying about other people. Now that I've changed my focus, I'm not alone... Now, the fight isn't just about me... Now, I have the courage to stand up and lead the charge again...

Deal the cards. Let's play...

Why dwell on failure?

"I've set my teeth," is an old family saying meaning: to decide with amazing stubbornness. I may get knocked down. I may wail and despair for a moment or two. Then I set my teeth, figure out what's next, and get on with it. I refuse to spend my life feeling sorry for myself. It gets me nowhere. Yeah, it's bad. But I've gotten over that. It's old news. It was terrifying at first. Nowadays, the story is boring. I've told it a million times. Yes, I have a rare and complicated condition that makes living very tricky. But, I'm living aren't I? I can still contribute to the world in a meaningful way. I may accomplish that in a completely unorthodox way, but there is honor in being a trailblazer. This is certainly not what I thought I'd grow up to be. But what it has turned out to be, I'm making the best of.

We're taught in school that getting the right answer is the all important thing. The kid that fails is the dummy, the slacker, the good-for-nothing. There's a right way and a wrong way and the wrong way is to avoided at all costs. But that's not how the real world works. In the real world, often there isn't a right answer. In the real world, sometimes failure is the best thing that can happen. In real world stories, they all run essentially the same way: "I thought this one thing was going to happen, then something completely different happened, and it all turned out like this."

I thought I was going to have my career, get married, have kids, deal with the problems of parent teacher associations, deal with other soccer moms, get divorced, and figure out how to be an awesome single-parent household. Maybe getting remarried later down the line when the kids are older. That seemed probable to me. Getting disabled at such a young age as to be considered "Retired" by the Social Security Administration (and having the body of a retired person to match)... No... I never did think of that being in the cards. Who would?? I had dealt with a 3 year knee injury as a teen. I was no stranger to chronic health issues. But I figured every problem had a solution, right? No... there are still plenty of mysteries out there. We know oh, so very little.

These days, I've learned to linger on the failures just long enough to figure out what went wrong. I take responsibility for my part, but I don't beat myself up about it. Failure is usually memorable enough without additional self-abuse. I figure out the past, and move on. Sometimes I need a rest, so I can find a new approach for the future, and then go again. If I'm set on my goal, I try to exhaust all available avenues, and make new ones if I have to. Time will also present opportunities that didn't exist before. And I don't have to have faith that it will all work out, because that's not the point. The point is doing the best with what we've got.

As children, we have dreams. Then, as we learn, we see how our dreams were unrealistic, born of ignorance, and need some fine-tuning if we actually want to make them come true. This happens time and time again. We think one thing, then we test it against reality. The outcome may be a total surprise, or it may be what we expected. Most of the time, it's a mix of both. We take this new information, we think new thoughts, and then we test those against reality... and so on. The right answer isn't what's important. Knowing what to do when we get things wrong is.

However, we don't teach what to do when things go wrong in our schools. We say: study, memorize. If you're wrong, you're a failure and need to be held back until you can get it right. But in the real world, sometimes that's impossible. I mean, yes, you can study your little heart out and memorize all sorts of things. But sometimes, we're in an area where there's little study and we don't know what's right from what's wrong. Sometimes, we're in a situation where there is no right answer. And sometimes, the answer doesn't matter so long as it works.

I set down certain principles for myself: I must do my undertaking legally and honorably, because I like being able to sleep at night at look at myself in the eye in the mirror. After that? It doesn't really matter. It may take a long time. It may take multiple efforts. It may take an unorthodox route. (Can you imagine having your holistic doctor calling the ambulance to take you to the western hospital? That was my first clue...) But this isn't for a film crew. I'm not on a reality TV show. I'm just a gal living my life. That's messy sometimes. This isn't about perfect, so it's not about failure either. No one is handing out a report card at the end of my life.

What matters is, after my principles are met, am I okay with how I'm handling my life? Do I really need to be doing what I'm doing? Do I need to be doing it in the way I'm doing it? How does it matter to me? I'm the one who has to suffer the consequences, so these decisions are my responsibility. And yeah, I'm willing to bite the bullet that sometimes, I'm going to screw up, things are going to go wrong, or the unexpected will happen. That's life! There is no deserving or not deserving in there. It's only in story books that wizards appear to tell you you're the chosen one and here's your life's path. In the real world, most people make their life path by just setting off in a direction.

So if it's not about right and wrong answers, but results... And if it's also not about deserving or not deserving, but getting the job done... What is it I want of my life, that I think is attainable? Let's go for that. Is it going to be scary? Absolutely! Are there going to be hard times? Like we can't imagine. Are we going to encounter failure? For sure. But all journeys have these things. You'll have that on a job this size. Every great success has a heap of mistakes in its past. So why dwell on failure?

When it all feels like consequences...

A friend of mine recently had hip surgery following a car accident (which, thank the gods, alerted the doctors to the bone cancer...). My friend was complaining that, although he had had a good night's sleep, it meant he had missed his scheduled pain control and now was feeling hideous. Another friend, very well meaning, said, "well, at least you got a good night's sleep!" And in that moment I suddenly found the right words I'd been searching for, for years: "It's hard to celebrate the good stuff, when it has consequences just like bad stuff."

We're taught that consequences follow actions. The laws of cause and effect. We learn, as we grow up, that although our parents may not be around to punish us, some actions have built-in punishment: waiting the last minute trying to pull an all-nighter, going on that weekend bender, flying too close to the sun... And hopefully, we learn, that in order to avoid consequences, we don't do the bad thing in the first place. We balance desires with our values and experience. We delay gratification for "right now" in order to accomplish even greater in the future. Yes, studying doesn't feel good right now... but getting your foot in the door because you have a degree is better than fun. It can mean the difference between eating what you want and eating what you can afford.

So it's really, really difficult when that whole system gets thrown on its head. When getting a good night's sleep isn't rewarded with a day of feeling well-rested, but a day of agonizing pain. To steal from Terry Pratchett: sometimes it isn't about good or bad choices... sometimes it's just about choices. I've found that life becomes really difficult to gauge when there's no way of knowing that what i'm doing is right, but knowing, no mater what, there's something I'm doing wrong, that I'm only going to find out about when it bites me in the @$$. That's a really, really, uncomfortable way to live. And sometimes life is like that. No amount of applauding is going to help. The best medicine, in my experience, is straight-up laughter.

The U.S. military has an "unofficial" set of acronyms for this: SNAFU, TARFU, and FUBAR. Situation Normal: All Fouled Up; Things Are Really Fouled Up; and Fouled Up Beyond All Recognition. The first one is usually said in resignation that things are screwed, and yelling and screaming isn't going to help. The second one is generally said with eyes wide, as things are serious now. The last one is used when so much is going wrong it has just gotten absurd.

That's the point at which we really learn human limitations, and just how amazing it is that we can get anything done. It's the point at which we see humanity for what it is, and how we all take ourselves so seriously, but that things haven't changed. We're all making the same mistakes. We're all still fighting over the same petty things. Shakespeare is still relevant because we haven't grown up a bit in the last 400 years!!! We might need to change the language up a little bit, but we still understand the story... we still understand the feelings... We're all still... human.

When it all feels like consequences, when it's difficult to celebrate the successes, what else is still available? Laughing. Wry, bitter-sweet laughter. Deep, surprising laughter. Not just, "I will acknowledge that that statement is funny" laughter, but genuinely-felt laughter. Laughing at ourselves laughter. (That's the best one because it's the most healing.) The moment we can laugh is the moment we've let go of the anguish. Laughter, more than anything else, can raise morale and breathe life into the dying.

Life is still life, and sometimes it's not fair. Sometimes there is no right way, there's only the way through. Sometimes there is no good answer, there isn't even an answer, only more questions. It's messy, it's shocking, it's hauntingly beautiful, and sometimes downright magical. It's life. And, to quote Mr. Mellencamp, "Life goes on, long after the thrill of living is gone."

Let's laugh and make the best of it.

Dedicated to Brandon Miller

How to talk to someone who is chronically ill...

I complain about my health. That makes other people uncomfortable, I know. We're not supposed to talk about our health in this culture. For one, that's something personal. So personal that we even protect it by law with doctor-patient confidentiality. For two, we don't praise weakness in this culture, and admitting health problems is doing exactly that. Or so it seems. But for someone who is chronically ill, it's a little different.

See, if I were you I'd be complaining about my job, or traffic, or stupid people I have to deal with on a regular basis. We are a complaining species. But I don't have a job or a commute and the number of people I deal with on a weekly basis is small. I deal with my health. That's pretty much all I deal with. That and doctors. I'm complaining about what I know.

I'm not looking for sympathy at all. I'm looking for commiseration. I'm looking for a conversation something like this. Let's assume this is my version of "texts from last night".

Me: OMFG... So, last night I was dreaming that I was nauseated. Then I realized that the nausea wasn't part of the dream and woke up so fast... I made it to the bathroom, but GD... My sleep schedule is effing shot now and I feel like hell. FML

You: Yeah, well, you'll have that on a job this size. Do you have anything on your schedule that you have to be at? Is messing up your sleep schedule gonna screw things? Bravo on making it to the bathroom! Clean up is always easier that way. lol

That type of text message would be perfect. It's first says, "That sucks!" in a funny, uplifting way. Next, it addresses the problem, but in a way that focuses on outcomes, rather than the problem itself. I don't know about other people with chronic illnesses, but I don't actually want to dwell on my symptoms. When I verbalize them, I assume you realize what the consequences of having to go through that would be. But I forget, most people stop their whole life with an illness, because they assume it will be over. It's freak-out time when symptoms come up. But no so with me. It's "time to make the donuts," so to speak. So the way the example text ends is a way to acknowledge my achievement, also without dwelling on any of the symptoms.

Sometimes, I'll admit, I seem inconsolable. I'm a sobbing mess. My world is falling apart around my ears (or so I believe), and, "Things are never gonna get better!!!" (Yes, that's an actual quote.) Here's a sample response for those situations.

Me: But thing's aren't going to get better. This disease is degenerative! There's nothing they can do!

You: Alright. You're doomed. But you know what? You're still amazing. You still shine. I still want to be around you. This doesn't diminish who you are. It may make it harder to be who you are and express that... but we're all grateful for what we can get. Any little bit of you is better than nothing, which is what we had before. Hang in there. It may be a downhill slide, but you are still a beautiful soul. So what if it's impossible? Make it look awesome...

Me: But I'm broken! They can't fix this and all I'm doing is getting sicker! I'm a money pit and a a burden to everyone around me!

You: Hold up, there. There were no promises when we were born that we'd be healthy. There were no promises we'd be financially secure. That's life. We're all stumbling through it as best we can. It's okay that your best isn't good enough sometimes. Or even a lot of times. That's okay. Life isn't a race to be won... it's a marathon to be endured. We want to help pick you up. We want to keep you with us. We're happy to pick you up. If we had to stand in line to buy tickets, we would. So don't worry about what it's costs us... You're important enough. We do these things gladly.

When we stumble, help us laugh at it. When things are rough and we complain, admire our spirit and our hard work. When things are impossible, dare us to dream. When we despair about what we have lost, remind us it's not about winning.

Don't be afraid to talk to us, please. We do feel very alone in what we're going through. But we know you're looking at it from the outside. We know you can't share our perspective on this. We're not asking you for that. We're asking you to see us despite that. We're asking you if you can look through or illness and still see the person inside there. We want to know you haven't give up on us even though we feel miserable. We want to know that just because we feel miserable, it doesn't mean we are miserable.

Yes, it is difficult to know what to say. Without a doubt. But I hope I've given you some ideas here. I hope this helps your conversations with folks like us.

Good luck.

How I came to learn I was disabled...

I am outraged by this article: A migraineur entrepreneur: yes, it can be done! This is another example of someone claiming disability and then setting an unrealistic goal of achievement, when by their own admission, they do not display the characteristics of a disability at all. It's the equivalent of saying Kate Moss is an average beauty, and all women can be her. This woman claims she couldn't work a full-time job but then goes on to say she managed 100-hour work weeks. Um... No.

I learned I was disabled when I went into a mandatory unemployment seminar. There, I was told by the leader of the session that if I'm not able and available to work from the hours of 9am until 6pm, I could not count that as a work day. That is, if I was sick in the morning and had to come in late, that would count against me. I went up to the leader and talked to him afterwards. I told him that I'd never been able to do that in my life. He said that I had been improperly collecting unemployment and I would have to pay that back to the state. He also suggested that I talk to VocRehab to see if there was any way to find a job that would work around my regular illnesses.

I went down the hall and I spoke with VocRehab. The lady there was very nice. She asked me, "Well, what can you do when you're sick?" I replied, "Sit in a dark room with no noise and pray for mercy? I get migraines." She pondered that a moment then asked, "When you're at your worst, can you look at a computer screen?" No. "Can you read a book?" No. "Can you answer the phone?" Sometimes. "Can you talk to someone in person?" Sometimes. "Are you in pain right now?" Yes. She looked at me blankly and said, "Yeah, we can't retrain you for any job that could handle that. You need to go talk to Social Security Disability."

I was shocked. I lived in Seattle at the time, and I was part of the IT industry. The culture there, thanks largely in part to Microsoft, was that 10am was a perfectly acceptable time to roll into work. My boss regularly didn't show up until noon. But it was also understood that we worked long hours and a speeds that put 3rd party companies we hired to shame. They had always been willing to work with me and work around my doctor and chiropractor visits, my need to end the work day early or start it late. As long as I put in my 40 hours, they didn't care. So I never knew. I never realized.

And then it all became moot as the migraines went daily. I had, sometimes, a small window of a few hours where I was not in pain. But mostly I was in pain, every day, all the time. Sometimes the pain would even invade my dreams and my sleep. It still does on occasion, like last night. My migraines are triggered by barometric pressure changes. Seattle was a terrible place for me to live. The constant rain six months out of the year was generated by low pressure systems sweeping in from Alaska. The barometric pressure was in constant flux, like a roller coaster: up one day, down the next. That roller coaster would manifest as a migraine.

At first, if I'm lucky, I'll get a visual effect: a little white dot, about the size a a pixel, starts to fly somewhere in my vision. It moves like a fly, but it's tiny, and bright white like it's made of light. In it's wake is a black tail. Then all the lights get brighter. All sounds get louder. It's as if someone is turning up the volume on the world. I can hear my cats walking on carpet and it sounds like children romping in piles of autumn leaves. The squishing of the carpet fibers make a crunching noise. With light, it's like when you walk from indoor lighting out into the afternoon sun on a snow day. The sudden light from the sky and the ground is too much for us. We squint. We recoil like a vampire. The day star is mighty. Headlights in the dark are like that to me. Throw on top of this mix the regular, base-line pain of the migraine... that pain is very much like your worst hangover headache. But add in there random spikes of pain that suddenly strike like an ax blow to the head. Thinking becomes near impossible in those moments. Parts of my language center will shut down so that it's difficult to remember even the simplest words. I'll have to say things like, "make the head hurtiness stop," because I can't recall the word "pain." Or I'll have to make new words like, "Where's the ca-chunka-chunka?" for, "Where's the stapler?" (because that's the noise a stapler makes). Oh, and I won't even go into the associated nausea & its consequences. Yuck.

Working? Not an option. Not even part time. I was offered a paying job with Wego Health to help manage their migraine community. They were fully aware of my migraine disease and were willing to work with me anyway. All I had to do was manage a small blog, log in to the system four hours a week. If I couldn't manage that some weeks, they would understand. I still had to bow out because I was just too unreliable at the time. Every day I was trying to make the pain stop or lessen in any way I could. That was the only thing that mattered. If I could get free of the pain, all things were possible. When I was in the pain, nothing was possible. Even with a prescription for oxycontin, I still had to go to the ER on average of once a month, because the pain got to more than I could deal with at home.

So when someone says: "In the very early days of my blog, I talked about how my headache specialist recommended I not work a full-time job right out of graduate school. My migraine episodes were frequent and severe enough that a 40 hour/week job was not for me---at least that’s what was suggested to me." And then goes on to say, "I spent the first few weeks of business working well over a hundred hours a week..." and, "I was in the shop from 9 until 9 every day..." I call foul. You have got to be effing kidding me. Do you not see what you even wrote??? Normal full time hours are only 40 per week. Not 9am to 9pm every day.

Unreal. And that this story would be promoted as a "you can do it too!" just breaks my heart. Something like that is difficult for the average person, let alone someone who really is debilitated from migraine disease. That they would set the bar that impossibly high from the word go and then claim that it was done by someone who was disabled? I'm only glad she was so boastful of her accomplishments! I would have been feeling pretty miserable if I thought I should have been able to do that too.

Real dreams and accomplishments are possible in disability, but not what this lady is talking about. When I am able to do the same, I will let you know how I got there. But in the meantime, caveat emptor---let the buyer beware. Not everyone out there is giving you the real deal. Whenever anyone tries to tell you, "you too can...", take a look at how they themselves did it and see if it's reasonable. Look at their actions, not their words.

My hair is on fire. I'm going to go put it out now.

Special thanks to Brigg Baldwin for editing.

I met another unicorn!!!

I say we're unicorns because we're the case that doctors learn about in school, but are never supposed to see in their practice. I finally have talked to another person who has my disease!! She's a lovely woman from Kentucky with that slight southern drawl that puts you immediately at ease. We talked for a few hours comparing notes and symptoms, sharing horror stories and difficulties. And above all, we shared our fighting spirit. Neither of us wants to settle for a marginal quality of life. We want to know about our disease in order to conquer it. We don't need to be what we once were, but we know we can be better than this.

Our pattern of disease is very similar, as is our current list of complaints. We've both run into the same sort of stigma in the health community, and similar apathy from health professionals towards our disease. It was like I suddenly had a sister who I was able to turn to and validate, "yup, our parents are off their rocker on this one...". I learned that my experience was not unique, and therefore not my fault.

Now that I know this, I have a whole new crop of questions. Why aren't doctors more interested in our case? Why go into medicine if not to delve into these mysteries? I feel left out in the wilderness because of what seems to be a reluctance to leave the well-lit safety of "what we know." Our symptoms get managed at the absolute bare minimum, but we're never actually given a quality of life. Why is that? Our doctors, wonderful though they may be, shy away from acknowledging the chronic pain and resulting fatigue. (I suspect the War on Drugs has a lot to do with that.) I was absolutely shocked when I finally got a diagnosis of small fiber neuropathy, because that meant an acknowledgement of my pain. And I was able to pass along the name of that diagnosis to my new friend. We're going to keep in touch to see what sort of progress we can make: her in Kentucky, me in Colorado.

One good thing I learned was that going to a specialty clinic like The Cleveland Clinic wouldn't help me. She'd already been and they really had nothing new for her. They were more interested in her doctor, who was able to diagnose her, than they were in her. It was as I suspected: a lot of great marketing, but really the same health care opportunities (or lack thereof) beneath. I dodged a bullet, thanks to her exploration.

I think the most important thing I learned though was that she was just as frustrated as I. She too was driven to find her own answers. She has the same level of dissatisfaction that I do. We both believe there's a more aggressive way to treat us that would give us a better quality of life. We hate that we can't make plans on Monday for Friday, and know we're going to be okay once Friday arrives. We know that pain management exists. We just don't understand why we're being denied access to it. We have a disease that can be verified with blood tests. It's not like there's nothing else wrong with us. Why is it so difficult to believe we have chronic pain as well? Why is it so difficult to understand that some days are worse than others, and flares are unpredictable? Why is it so hard to believe that we really are trying to be more active in life, and aren't just looking for some fix?

There are two conclusions I come to: either they can't/don't care, or they can/do care but it doesn't matter---there are outside forces at work. This is what upsets me most about our health care system. It seems like there is so much that goes on behind the scenes that we don't get to know about but has an affect on our care anyway. The doctors are making their decisions based on what they see, but they rarely explain what it is they're concerned about. I know I would only need a baby dose, 2.5mg, of oxycontin twice a day to handle my regular level of pain. I know that for my flares, I could need as much as 20mg, at worst. That's less than I was on for my chronic migraines. At that time I was on 60mg, three times a day, with a free pass to the ER for as much dilaudid as I wanted. My pain isn't that bad now. I don't need that high a dose or a note for the ER, like before. But still there's this absolute reluctance.

There's also a reluctance by our doctors to prescribe additional medications, even though we are still suffering symptoms. I know I did better when I was taking additional T3 supplements for my thyroid. I had to move, so I lost that doctor. Since then, I keep getting this song and dance that, "because it's not proven..." they don't want to try it. Well, I've been on it before and I felt better. I performed better throughout my day. I was healthier. Isn't that proof enough? But getting a doctor to reach that conclusion is like pulling teeth. This reluctance makes much less sense to me, since we're not even talking about abusive substances. So what's going on there? I don't know that we'll ever get to know.

Even though it's not all good news, it's still a huge relief to know I'm not alone anymore. These problems that I've encountered are not unique. My symptoms are not unique (we both turn ash grey with a bad migraine!). I have validation. I have confirmation. I have a sister-in-arms in this battle against our disease. I feel recharged and ready to give my all again. I'm not just fighting for me. I'm fighting for her too, and she's fighting for me. Together, we can make better progress than we could have alone.

Christmas came early this year ^_^
(Published with permission)

Procrastination & Forgiveness

I have a Midwest work ethic. I've never liked taking more than two weeks off from work. It makes me anxious. I should be doing something. Something constructive. Something to take care of business. But that's really difficult to do when our bodies don't cooperate. And it's hard to override those feelings. For me, I struggle daily with feelings of guilt over what I'm not doing but should be doing. To my heart, it doesn't matter that that my body is kaput. I still want to do these things. The wanting hurts. So I've had to learn to slow down.

As Jenny Pettit puts it,

"With chronic illnesses (and pain and fatigue) comes plenty of chronic guilt. We may voice the legitimacy of our limits for the rest of the world...but inside our own heads we hear so much doubt. Do I really need a 4 hour nap? Can't I stay up late and get this task done? Why should I get to claim "brain fog" when other people wouldn't need to stop? (And yes, "brain fog" sounds pretty silly to us, too, even though we live the debilitating effects.)

"Yes, we do. Yes, we need to nap - our bodies are fighting 24-7 battles against themselves. No, we can't stay up late - what little functionality we have is strongly correlated to our ability to adhere to a schedule. We 'get to claim brain fog' - our work is no good when it comes from a low-hanging cloud. We need to forgive ourselves.

"We need to BELIEVE it's ok to live within these limits. We need to allow ourselves compromises with ourselves. We need to accept we aren't going to be able to build the tower of Babel on a 4 day weekend just because "it has to get done somehow", and love ourselves anyway. We need to ask ourselves for forgiveness and give it wholeheartedly and without delay."
(Forgiving Myself - UII - Understanding Invisible Illnesses)

It's not that I won't reach success. It's just that it's going to take me a lot longer to get there. Yes, the laundry will be hung up eventually. Yes, I will be able to finish that blog post. Yes, that task is impossible for me right now. But it may be possible later. I can do things in small, manageable steps. I don't need to complete everything at once. I can accept my limits. I believe I've used this analogy before, but it bears repeating. I like to think of it like driving on the highway. There's a big difference between acceptance and approval. I may not approve or like that the car in front of me has come to a sudden stop, but I accept the fact that it has happened, and slam on my breaks so I don't cause an accident.

There are all sorts of things that can happen to put walls in my way. I need not beat myself up about it in the meantime. In fact, science shows that the act of forgiving ourselves for doing poorly can actually help use do better the next time, as it helps us change our behavior for the better. Beating ourselves up about it makes for poorer performance, as does using forgiveness as a "free pass" to continue the bad behavior. If we're focused on success as our goal, it's better to forgive than punish. This was shown in a recent study of college students and their reaction to procrastinating studying for an exam. If the student did poorly the first time, forgiveness was the key to improve performance.

"Forgiveness allows the individual to move past their maladaptive behavior and focus on the upcoming examination without the burden of past acts to hinder studying. By realizing that procrastination was a transgression against the self and letting go of negative affect associated with the transgression via self-forgiveness, the student is able to constructively approach studying for the next exam."
Timothy A. Pychyl from Psychology Today's Don't Delay

Also, just because there's a wall there now doesn't mean there will always be a wall there. I may have an inspiration and discover a door through the wall, instead of banging my head against it. I may find a way around the wall. The wall may come crumbling down. Sometimes, however, we find a way over, where we're able to use the walls like springboards to success. One of the most inspiring stories I have heard lately is that of Amy Purdy, a woman who lost her legs below the knee and now is a professional snowboarder.



Now, while I may not end up a professional snowboarder (that's not really my thing) I can, and have, used my disability to further my work as a writer. My audience has changed and the pay is lousy (e.g., non-existent...). But I'm still contributing to society in a positive and constructive way. That's why I made this blog. Helping others with problems similar to mine helps me help myself. So it's okay it I have to do it in bits and pieces. I can forgive myself my procrastination and do more when I'm feeling better. The point is I'm eventually able to get it done and delivered. I may not be at the rate it was when I was well, but I still do it. I can accept my shortcomings, manage them best as possible, and forgive myself the rest.

"Perfection is the enemy of good enough." -Russian Proverb