My War

I have been wrestling my Shadow, and I lose frequently. My pain is a monster. You cannot see it. I wish you could. It has teeth that chew on my head, claws that dig into my hands and feet, and a tail that lashes my body. I look and frequently can behave like there is no battle going on. I am a veteran of this war. But sometimes I am overwhelmed. The monster has me beat. And I try to do my beat to get by, but I know I am vulnerable. I know the pain is crippling me and I'm just trying to get home.

Now if someone reproaches me while I'm losing to a monster, I can become a monster myself. Flight isn't possible, so fight kicks in. My Shadow can take over at this point. My will is so weak from the struggle, my normal, rational self slips. I don't like it. I don't want what's going to happen next to happen. But it happens anyway: I get lippy. I get loud. I curse like the sailor my parents raised me to be (nod to the U.S. Navy). I fight back. Because I have not survived this long by rolling over and giving up.

I've lost count of how many times I: "should have been in a coma," "should not have been able to be up and walking around," "should have been dead." I am a warrior. And this war does not end. This is not Post Traumatic Stress Disorder. This is Current Trauma Stress Disorder. Don't be fooled by my smile. When I'm not smiling, please give me space. Otherwise I will snap at you, and it's not pretty.

You do not know the battles I have had to fight to get what should have rightfully been mine from the beginning. Not business battles, though I've have my fair share of economic strife. Not traffic battles that people needlessly wage on the roads each day (never thinking a car is a deadly weapon, by the way). Not career battles, though I myself still long to be in that fight. I battle with my pain. I battle my nerves that fire of random sensations at random moments. I battle chronic nausea, gastropharesis, and random choking for no reason. I battle migraines that would end you, as they ended my full-time career. This war never stops.

Some days are better than others. Even the beast sleeps sometimes. But I have to take a martini-glass-full of medications each day to get even the tiniest respite. On a scale of 1 to 10, I don't count any pain below a 5. If it's only 5, it's time to take care of all the chores I've been neglecting and run errands while I can. But I have to be very careful not to wake the beast, so I cannot do too much. These days come maybe 2-3 times per month right now. With more medication, I may be able to get it up to 4, or (Heavens, please!) 5 times per week. But that's another battle I'm fighting.

I don't get to live life like most people. My invisible monster makes it difficult to explain my situation to others. I make chronic pain look awesome. And why shouldnt I take advantage of the luck I have left? Yeah, there's a downside: people don't believe I'm as sick as I say. But what's my other option? Sitting in a wheelchair when I can very well walk myself? That's lying and manipulation. I don't brook with that. I will not beg for sympathy when I don't need it. And when I do, it's only because I'm in crisis.

That's why it's not PTSD for me, it's CTSD. This is real. This is now. I'm more amazing than you know.

Applying for Social Security #Disability

I have been doing Social Security cases since I applied for Social Security myself 14 years ago at the tender age of 29. For the first 12 years, my success rare was 100%, and no one ever needed to go to trial. Times have changed since then.

I tweeted last year that the Disability fund was going to go bankrupt in 2016. Thankfully, Congress fixed that, but at the expense of our debt. There's no other way right now. As a side-effect, however, there's still terrible news. People who used to be considered disabled (quadriplegics, for example) are being denied disability and thrown off the disability rolls. I have 3 clients right now for whom that is the case.

It’s a terrifying time to be disabled in this country. That’s why I wrote my book, Chin Up! 50 Ways to Make Money While Disabled. People don’t understand that thigs like the ABLE act is only if you were disabled as a child. Even though I was disabled so young they consider me retired, labels are a big deal to government programs. I thank my lucky stars ever day for my writing career prior to when I got sick. As Ben Carson and Hillary Clinton are learning, words are slippery and the pen is mightier than the sword. (Which, by extension means Twitter and Facebook are more powerful than the TV news).

The point is, no one gets rich on government cheeze. Oh, they’ll tell you about fraud cases and widely publicize it, but I can guarantee I make less than 25% of what I could make if I were able to work full time. When I can’t work, I’m poor. When I can, I’m okay. Kicking me off SSDI isn’t necessary to motivate me. I still work today, though only part time. My disease is a full-time job that no one would want. But damned if I can’t quit being disabled like I can quit a job.

Obama exploded the disability rolls from 9 million to over 15 million at the peak. And people wonder why people in wheelchairs are being thrown off and no one can get on disability. We’re broke folls! The gravy train is over, and real, legitimate cases are being thrown out with the bathwater (pardon for mixing my metaphors). A lawyer I know in Phoenix won’t even take a disability case if the applicant is under 50 years old.

Times are hard, and they get hardest for people at the fringes first. Here’s how to prepare for your SSDI/SSI application:

1. If you can apply online, ssa.gov has an easy application process. If you need to apply on paper, you can call and ask for the forms to be mailed to you, or you can pick some up at your local Social Security office.
2. Gather all your medical information, make xerox copies. ALWAYS KEEP YOUR ORIGINALS. You can send/take in your paperwork with your application. This can help you to avoid an appeal.
3. If you need assistance with the initial application, many disability advocates can do this for FREE. You can never be charged money for your initial application, otherwise it can be considered government fraud.
4. If you do have to appeal, you don’t need a lawyer to file (this is what I do for my day job). Lawyers are only required if the appeal goes to court. You CAN be charged money at this stage, but it won’t come out of your pocket. The Social Security Administration pays for you.
5. If you require a lawyer, a lawyer from ANY STATE will do, since Social Security Disability is a federal program. (This is not true for state disability.)
6. You can appeal as many times as you want. You can also go to court as many times as you want, as long as there are new circumstances (you got worse, you got something new, etc.)

If this is too overwhelming for any reason, find a Social Worker in your area. They can help guide you through the process. DO NOT trust what the workers at Social Security Offices say. Many times they aren’t current on the laws. They’re bureaucrats after all.

What You Can Expect Once Approved
If you were disabled before 18 years old

You are in a special category.

You will be placed on SSDI and SSI because you havent been able to pay into the Social Security Trust fund, not being old enough to work full time, since it's expected you did school full time (if you could attend school, that is). You will have access to benifits stipulated in the ABLE Act (for more information, check out this list of 10 Things to Know About ABLE Act).

Your first check will be dated according to when the federal government considers you "Officially" Disabled, minus five months. If there was a delay from when you were first disabled to when you were approved (sometimes the process can take years to be approved) you will receive a large sum payment. It is every monthly payment you would have received if you had been recognized as disabled when you actually were disabled (minus five months).

Approval for Medicare benefits runs on a different clock. More on Medicare to come in a later post.

If you are approved between the ages of 18 and 29

Again, you are in a special category.

You may have worked as an adult at this point, but if disabled at this age, you haven't had enough time to pay into your Social Security Trust Fund. As a result, there is a special formula the Social Security Administration used to calculate your SSDI payment, based on your income for the last year you were employed. You will receive a larger SSDI check as a result, and you may not qualify for SSI as a result.

The rules for your first check are the same as above.

If you are approved between the ages of 30 and 61 (or there abouts)

You will receive SSDI based on what you have paid into your Social Security Trust Fund. If that amount is too small (i.e., you're WAY below the poverty line), you will also qualify for SSI.

Your first check follows the same rules as in the first section.

If you are approved at the age of 62 and up

Because you are the age of retirement, you will be pushed into retirement and may not revieve approval for SSDI. If this happens, APPEAL! You can receive both your Social Security retirement check and a disability check if you can show your disability is severe enough. This is because most retirees are healthy for a while before old age itself becomes crippling.

Your first check(s) will still follow the rules as mentioned in the first section.




Feel free to ask me any questions. You can reach me through Twitter at @MakeThisLookAwe or @DsabldMnyMakrs

The Realities of Working While Disabled

If the #POTUS really wants more #peoplewdisabilities to #work, he should understand we already have more high school and college diplomas than our healthy counterparts. It’s not just as easy as providing #accommodations. We already get that under current laws. What we need are JOBS, just like our healthy counterparts, and LESS RED TAPE for those who can never, ever hope to get more healthy than they are today.

You can find out the real disability story in this contry today in the introduction to my new ebook, Chin Up! 50 Ways to Make Money While Disabled, available through Amazon.com.

Please, Mr. President, if you really mean to help us, look at the logjam in government rather than to the speck in the eye of the disabled....

SSDI due to Bankrupt in 2016 - 20% Reduction in Benefits Forecast

If you receive disability benefits, PAY ATTENTION: a new House rule introduced this year will cause millions to see a 20% reduction in their benefit payments. Lest you think this is something people on disability can affort, let me remind you that disibility benefits in the U.S. are not enough to keep recepients above the poverty line, so a sudden 20% reduction is only going to make people already poor an unable to provide for themselves that much worse off. It is unconscionable: Social Security is not a welfare program, it is something that WE have paid for through working! Decreasing SSDI benefits is only stealing from the citizenry, it is NOT a reduction in government spending. It's essentially a tax increase on one of the most vulnerable populations in this nation.

Original Article:
http://www.washingtonpost.com/politics/social-security-disability-trust-fund-projected-to-run-out-of-cash-by-2016/2012/05/30/gJQA3AfH1U_story.html


YOU CAN HELP! Contact your Representative — Contact Your U.S. Representative
If you are unsure what to say, below is a sample letter.

Dear Madame or Sir:

Hello, my name is [put your name here], and I am writing today to ask for your assistance and commitment to ensuring nearly 11 million Americans with disabilities maintain access to the full scope of benefits they have earned and rely on to make ends meet. The SSDI program is NOT a welfare program. It was paid for with MY contributions and by my employers' matching contributions. Blocking or reducing these payments is not fair or ethical, and it places one of the greatest at-risk groups in harm's way. Even though many rely on SSDI for their sole source of income, it is not wnough to keep them above the poverty line. A 20% reduction in benefits is going to create an immediate welfare crisis— where once there was none— for one of the most vulnerable groups.

As you are aware, following the inaugural convening of the 114th Congress, the House of Representatives adopted a rules package which barred the transfer of funds from the general Social Security retirement fund to the disability insurance program (SSDI) - a move employed 12 separate instances by Congress during the last seven decades. Unfortunately, this could not have come at a worse time, as the Social Security Administration projects SSDI insolvency by the end of 2016 without Congressional action, resulting in payment reductions by 20 percent to SSDI beneficiaries.

Contrary to popular belief, people with disabilities have more high school graduates, more college graduates, and more overall degree holders per capita than non-disabled people, so disability is NOT being used as a way to avoid minimum wage work. If poverty traps weren't built into the federal disability programs, most these people could command respectible, middle-class salaries. As things stand, beneficiaries who want to work must choose between the benefits they need and the work they want.

There is an immediate and easy fix: Reverse the House Rules. I, along with a nationwide community of like-minded individuals, call on you to address and remedy this manufactured Social Security crisis. While we certainly believe there is an appropriate time and opportunity for further debate on securing the long-term sustainability of our country’s insurance programs, such a conversation and politically charged debate should not come at the expense of peoples with disabilities lives!

Please do what is right. Change the House Rules immediately and show some of our nation’s most at-risk population that their government won't sacrifice their lives in the cross-fire of partisan politics, that the mismanagement of our nation's economy doesn't need to be paid for by those least able to afford it.

I eagerly await your response.

Thank you,
[Your Name]
[Your Email]
[Street Address - important for voter identification]
[City, Zip]

Book One is Written! Thank You for Your Patience!

I know I've been hideously absent these past few months, but with good cause! The book— 50 Ways to Make Money While Disabled— is now finished, and the website is set to launch December 15th, so mark your calendars and come subscribe to our Launch Party over at http://makemoneywhiledisabled.com!

This work was inspired by my "Unicorn Sister," Jana (see the link, Medical Unicorn above, for that back-story), who gave me the idea, "Ya know, I bet I could come up with 50 different ways for disabled people to make money, and keep their disability benefits (if they're on those programs). I bet it would work even better for people who aren't limited by federal benefit rules." As it turns out, I've discovered over 150 ways for disabled people to make money, and I'm learning of new ways every day. Jana and I decided to break those jobs up into three volumes to start, so we could get you the first volume as soon as possible.

The book is divided into three parts: the first part gives an overview of the disability benefit system and things you will need to know before you start working if you're receiving Social Security Disability benefits. The second part is 50 money-making ways, with start-up considerations, disability concerns, and the approximate average hourly income for that money maker. The last part of the book covers topics raised in the first half more thoroughly, and includes information on self-employment and where to find resources.

More information in the upcoming post: So... When do I get to buy one?

U.S. Spends 40% less on Disability Benefits/GDP than All Other Nations

Less than 1% of people who are disabled are able to come off of disability and return to work. That number should not statistically be possible. Less than 1% who are disabled become un-disabled? That was told to me by a Social Security Administration official. And looking at the picture further, it's even less rosy.

According to a recent analysis by the Organisation for Economic Co-operation and Development, or OECD, the United States has the least generous disability-benefit system of all OECD member countries except Korea. The OECD describes the U.S. disability-benefit system, along with those of Korea, Japan, and Canada, as having “the most stringent eligibility criteria for a full disability benefit, including the most rigid reference to all jobs available in the labor market and the shortest sickness benefit payment duration.” In addition, the United States spends less as a share of its economy on incapacity-related benefits than other nations. In 2009 public expenditures on incapacity-related benefits comprised just 1.5% of U.S. gross domestic product, or GDP, compared to an average of 2.4% for all OECD nations.
The Facts on Social Security Disability Insurance and Supplemental Security Income for Workers with Disabilities— Center for American Progress (emphasis mine)

And no one is getting rich on disability. Before the Great Recession, the overall employment rate— which the Social Security Administration defines as: annual earnings over just $1,000"— was only 12% in 2007. That means 88% of people on disability earned less than $2.70 a day. When I was employed, my morning tea cost more than that! And yet there are still alarmist articles like this one from Forbes which claims:

Benefits that would replace a significant portion of their previously earned wages, while also qualifying them for Medicare, our generous health-insurance program for the elderly. Today, the United States spends around $200 billion a year, literally paying Americans not to work.

I don't know what you consider significant, but my income is only a little over one fifth of my previous income. Also, I am limited to making $1,000, or I loose my benefits. This, while also not underpaying me for my skills (per Social Security rules). That means I can only work 6.9 hours per week. A old girlfriend of mine who was in sales can only work 3 hours per week! You find either of us a job like that, and we'll take it!

So the difference between most and the poverty line is only $4,000, and I can guarantee you most disabled folks medical expenses are more than $4,000 in a year. My medications alone average more than half that, and I've turned down my doctors offer of a few medications because they were too expensive. and let's not forget how much dental care costs should anything go wrong with your teeth, because Medicare doesn't cover dental at all, never mind that loads of medications and conditions ruin teeth and can make wearing dentures impossible.

And Social Security rules are made to keep recipients at poverty levels, after first subjecting them to the most rigorous screening process in the world! Not only do they want to keep our group as small as possible, but they want to ensure our dependence on a system that keeps us in poverty! Less than 1% of small group to start ever make it. It's worse if you were disabled after 30 without having had paid enough FICA tax. That is, if you receive SSI along with SSDI benefits, you are limited to only $2,000 in assets whether earned or in gifts, a number increased only once, in 1989, and never adjusted for inflation.

What I see is a system that punishes its most needy, trapping them in a world where their suffering is only compounded by the constraints it places on them, saying essentially, "If you are truly sick (which we highly doubt in the first place), you don't deserve a route to success. The "Pursuit of Happiness" is only for people created equally, and since you are less than, you shall receive less than." As of March 2013, the average monthly benefit for a disabled worker was about $1,129, with male workers receiving $1,255 per month and female workers receiving $993 per month on average.

Yes, Social Security has programs for becoming "financially independent," but to take advantage of these programs, you are required to plan to quit using your benefits as a result of receiving this "hand up" on a timed progress line (usually 3-5 years), regardless of whether or not your condition has improved. Basically what they're saying is, we know that your disability should not be an impediment to you being a fully functioning member of society. We know that if we help you learn some new skills, get assistance setting up your business, or invest in some small ticket items for your future (never to exceed the amount of your monthly benefits), then regardless of the condition that disabled you, you will magically be able to make enough money to support yourself and no longer need disability benefits or Medicare. (Nevermind that it would have been impossible to get health insurance after being disabled until four years ago.)

If you made any sort of success for yourself prior to becoming disabled, you're penalized and kept from a career that was successful up until the time that your health went south. Social Security requires that you never ever charge less than fair market value for your work, even if you're providing a discount because you may not be able to meet deadline like someone who is health. That's not what matters. What matters to the Social Security Administration,kk is you're doing the same work, and therefore must charge the same as a healthy person would.

In this way, many people who would like to make themselves financially stable are scared into avoiding assistance services, because we are required to plan to leave the safety net of disability benefits, regardless of whether or not our condition has improved. Income, rather than illness, really determines if you are disabled in the U.S.

Meanwhile, the stigma that disable people are somehow cheating everyone else out of "hard earned" money (as if disability is "easy" money) by inflammatory articles like this one from Forbes, "How Americans Game the $200 Billion a Year Disability Industrial Complex" This title makes you think that people on disability make $200 Billion a year, but that's just not true. It's the Disability Industrial Complex that's worth $200 Billion. That number is not an entitlement. It's an asset value! And what's with the word "Game"? What an explosive word to use, nevermind that it ignores all the facts!!

There is some hope on the horizon. The ABLE Act would allow those on SSI to create health savings accounts and not be limited to $2,000 in assets. This is especially important to children on disability as they grow older. If you're disabled as a child, you've never paid into Social Security because you've never worked. Therefore you're on SSI and limited to never owning more than $2,000 in assets. Mind you, the estimated cost of raising a disabled child is around $1,000,000. Basically the government has said to disabled children: Don't ever try. You were born at the bottom and you will stay at the bottom. A disability should not create a class system in this society, but that's exactly what we've done.

Let's change this!

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.

Travel Time #HAWMC

If I could travel anywhere in the world, where would I go? #India to ride on the back of an elephant like my great-grandmother, and study Buddhism where His Holiness has taken up residence ( I don't even know if that last one is possible, but I'd seek to find out.) However, I was told long ago by he U.S. Navy (since I was married to a Navy man) that with my condition, I should *NEVER* travel outside the country and we would be stationed state-side for the rest of my husband's career. Even the Navy wouldn't let me travel to it's well-provisioned bases world wide. With my health, there was too much of a risk, period. And my dreams of world travel were snuffed out, right then & there.

As it turns out, domestic travel is pretty difficult on my too. I hate planes for two reasons: 1) I am sharing air with how many people? How many of them are sick? How many are sick and don't know it, but are highly contagious? Who is contagious and just doesn't care? I may as well French kiss every one of them, it's the same as taking a long flight. They don't scrub that air they send blasting into your face. That's a blast of virus-filled air soup from the breath of everyone on that plane. And you thought it was the stress of travel that made you sick.... NO! Blame domestic flight regulations & the airlines for that cold.

The other problems for me (and this is how I learned living at a higher elevation would help me), every time the plane went up, my migraine went away. Every time the plane went down, my migraine went to level 10. I can't tell you how many times I've walked on to a flight, and been wheeled away from flight, incapacitated from pain. If I could afford it, I'd travel everywhere by train & ship liner. If I can't open the window for some fresh air, I have no business being there.

I used to LOVE traveling. My father was the son of a diplomat, so he was traveling to a new country every three years. To make it less of a blow on the kids, for the weeks before moving, they would find out all the exciting things they would be able to do in their new home. And my father passed on that tradition to me. We would take long road trips, visit the historical sites, the science & history museums, art & music centers, centers of industry, air show, train shows, boat shows, all sorts of events... It was so much fun to travel with him that the bumps and grinds of being on the road, four people and a dog piled into one car... The bad stuff paled in comparison with all the good stuff, and in pride myself on having visited 40 of the 50 states. Not just touching down in an airport --- actually visiting.

I miss that so much.

Now I only travel for BIG events. The last one was my father's 70th birthday. (Okay, the last one was really the birth of my niece & nephew, but I was persona non grata for that.) Three days at sea level with Spring storms was about enough to cripple me. I was so out of sorts I lost my cell phone and accidentally packed some of my step-mothers clothes thinking they were mine! (We shop at the same places because we both love their styles---she introduced me to a number of them---so it was an easy mistake.) And let's not forget travel is expensive!! I can usually only do it on someone else's dime.

When I think about all the places I won't be able to see, it makes me really sad. I can only be grateful for the people who help document these places for me... The advent of high definition series like EARTH (BBC) have really allowed me to travel the world in the safety of my living room. It's not the same as being there, but it's a solid second place!!

It's an amazing world we live in, and I'm so lucky to have been able to explore it so much in my lifetime. I really wish I had several lifetimes and the health to see it all. That would be truly amazing. But even my own back yard is full of life and wonderment, especially with a garden. Siddhartha was in perfect bliss rowing back and forth every day on the same stretch of river. I could be just as happy doing that too, and in my own way, that's what I do.

It's all good! ^_^

Working & Chronic Illness #HAWMC

Today's challenge: Off to #work! What #advice would you give to those on the job search? How do you juggle your job and a chronic illness? Any tips for the interview? #HAWMC http://hub.am/1dBSR2Y

First, let me mention that I am still learning about how to properly do this, so I may have some details wrong. Feel free to correct me in the comments & I'll update here.

Work and Chronic Illness
First, let's clarify that work with a chronic illness is different than work and disability, mainly because of the rules and regulations having to do with disability itself. Either way, trying to work while ill all the time is difficult at best. We must remember that he rules of rest and relaxation don't apply to us like they do for other people. We must take extra time and precaution to guard our sleep and down time. It's not that we need it to feel better (which we do), it's that we require it to keep from making ourselves worse. We're already sick! Most people when they're sick have the luxury of saying, "if I rest up, I'll feel better..." If we rest up, we don't feel any better, but we hopefully don't feel worse. It's not always that simple of an equation (rest isn't guarenteed to be restful).

DO NOT TRY TO TOUGH THINGS OUT! I know this sounds silly as working while chronically ill is already toughing things out. What I mean is, if you're chronically ill and working, don't just ignore your symptoms thinking they'll go away. Symptoms are our bodies messengers, alerting us to what is going on within us. The message isn't always clear, and it isn't always proportional to what's going on (small symptoms can mean big problems and big symptoms can mean small problems). Regardless, they're all we've got. And if you're already driving a car with bad breaks, you don't try to race around like Evil Keneval. Be careful, and be in close communication with your doctor when your body is communicating to you. Your doctor is your pit crew to keep you in the races. If you let them know that staying fit for work is your goal, they will happily work with you to help make you a success.

Work and Disability
There are two categories in working while disabled that we first need to address: is your disability VISIBLE or is your disability INVISIBLE? This makes a huge difference, especially if an employer must pay to have your disability accommodated for you to be able to work for them. I know NOTHING about dealing with a visable disability. However, there are many non-profit and government agencies who are willing to help. You can find those organizations by searching through Social security's Ticket To Work website, and you don't even have to be on Social Security Disability to receive help. Many of these organizations can help you apply for disability if need be. I just know the Ticket To Work search engine is a good place to start looking!

For the majority of us (over 90%!!), our disability will be invisible, meaning no one can tell we're sick by looking at us. Oh, we may have loads of strange behaviors that give us away, but for the most part, you'd never know we're sick. There are advantages and disadvantages to this. The biggest advantage is your employer never has to know. Most places in the United States are called "At Will" states, meaning that even given anti-discrimination laws for disability, you can be fired or let go from a company for almost any reason. You can try to battle it in court, but don't count on it. The working world's philosophy is: find another job.

The general rule is: Don't Ask, Don't Tell... Which can be frightening because it can seem like it means carrying around a secret. Here's how I like to think of it-- according to statistics, half of all adults live with a chronic illness! You're not alone or even a minority! So this kind of information---that we live with a chronic illness---falls into the Big, Golden Box of None of Their Business. The bottom line is, if you can manage your symptoms, you should be fine. If your symptoms are unmanaged and interfere with your ability to work, talk to your doctor. If your symptoms are as managed as they get, but they're still giving you trouble, talk to your local disability organization as mentioned above. (I'm going to a seminar later this month and will have more to report then, so watch for part 2 of this post!)

Working and Benefits
This information is for SSDI only. If you get one check a month for disability from Social Security, that's SSDI. If you get two checks, one is SSDI and the other is SSI. The rules for SSI are not covered here.

If this is your first time attempting to work since becoming disabled, there's good news. Social Security will allow you to earn as much money as you like and still receive benefits in what's known as a Trial Work Period, for up to nine months over five years (the nine months do not need to be consecutive). So if I work three months in 2010, two months in 2011, and four months total in 2013, I have "used up" my trial work period, and the rules for earning money change. This is, of course, assuming the money I'm earning is considered "Substantial Gainful Activity." That means one of two things: either I'm working the hours and duties that would be considered full time employment at minimum wage, or I'm earning more than $1070/month as a non-blind person (the rules for sight-disabled persons are different too).

IMPORTANT!!! Be sure to take out EXTRA money from your paycheck for TAXES!! Most people don't have to pay taxes while on SSDI, but the combined income of your SSDI and your Trial Work income will likely bump you up in a tax bracket, meaning you will OWE on your taxes! When you fill out your W-2, make sure you have them take out extra money from each paycheck to cover your disability income too. YMMV! How much you need to take out will depend on how much you make, but it can be as high as $133/week that you'll need to take out in addition to normal taxes. This is especially important if you find you cannot work after the Trial Work Period. You may find yourself trying to pay an employed person's taxes on a disabled person's income, and that's not pretty!!

There are a whole bunch of rules for what happens after your Trial Work Period is over, so I encourage you to read Social Security's Red Book and attend one of the many seminars available through VocRehab and other organizations on working while disabled. But basically it boils down to this--- you cannot charge less money for the work you do, if someone who was healthy would be paid more: you must "charge" equal pay for equal work. You cannot earn more than $1070/month if you want to keep receiving your SSDI check. So take $1070 and divide that by however much you made hourly during your Trial Work Period, and that's the maximum hours you can work per month and not lose your SSDI.

For me, that number is too small to make me employable except by someone who understood exactly why I have that limitation---which means revealing I'm on disability. This is why I'm currently working with one of these organizations to see what I can do. Because I don't make enough money to afford rent, foot and medicine, and rents have jumped here so fast, it's not worth it to downsize to a smaller place. I'd be paying more! So I have got to figure out some way to accommodate my uncontrollable symptoms while making enough money to afford my living situation, while not making so much that I lose my benefits (because I'm not getting healthier!).

I looked into the PASS program, and that's a plan that must be PRE-approved by Social Security, and it's a plan to come off of benefits ENTIRELY. I'm not ready to let go of my security blanket... Not while they keep diagnosing me with new stuff! For other folks, know that it's tough to get approval.

That's all for now... Look for Part 2 in a few weeks!

Migraine and Social Security Disability

For the first time since 1985 (29 years), the SSA is currently revising neurological disorders listed in the Blue Book. This provides the chance to change the rules on how disability is determined for people with migraine disorders. Currently there are no rules. Instead, a person is judged against the disability standards used for seizures. But that's like saying, "we're going to pay your insurance claim based on how badly your neighbor's house burnt down." Migraine is a different disease, treated far differently than seizure disorders. The rules for disability should also be separate.

Now is the perfect opportunity to raise our voices as one and insist they make this highly necessary change.

Please take action by submitting a comment to the SSA at this address: http://1.usa.gov/1gQS89a

You must take action by Monday, April 28, 2014, for your comments to be taken into consideration in decision making about revision of the neurological disorders portion of the Blue Book.

If you don't know what to say, feel free to use this below:

I would like to share my support for listing migraine and especially chronic migraine as its own disorder in the Blue Book. Chronic migraine has symptoms and limitations that make it on its own a fearsome disease. We can help ease the burden of those who suffer from it by giving them their own listing, instead of a lengthy approval process where they must "prove" they're as sick as someone else with a completely different disease. This helps no one, and costs the government money in the appeals process. Please consider changing the listing for migraine & chronic migraines.

Thank you for raising your voice!

#Pushing #Limits

One week ago I set out with one goal: to safely push my limits and see how much I could accomplish with my body. I set a few ground rules: While attempting this I would baby my body. That meant lights out at sunset, and allowing myself two sleeps per night. I was eating no meat, taking my vitamins + extra potassium daily, and limiting my caffeine intake to half an energy drink per day (I like the ones with the B complex, they help my migraines). I discovered some interesting things.

1) It is really difficult and time consuming to baby myself, but it is possible when the weather cooperates. (There were days I still needed my breakthrough medications and needed to lay low, but I was able to work through low level migraines and use exercise to keep the small ones at bay. This was extremely exciting to find out, and equally so, that I could wind myself down in such a way that I experienced few rebounds. The rebounds I did experience were doozies, though, but I prefer getting stuff done any day. My garden looks amazing and is ready for Spring!

2) The new diet is working! Almost started working a little too well there, I forget how dehydrating Sjogren's is when I have to take certain medicines! But I know know what I need to eat depending on what my body tells me. I have finally (hopefully) figured that part out! (*knock on wood!*)

3) Pain & nausea are managed with medication! I feel confident with the plan my doctors have for me here.

4) Chronic fatigue is NOT managed. I was falling asleep in Church. Not good! I'm going to have to do more research on the kidney front about this. Hopefully there's something more I can do diet or medication-wise (hopefully the former before the latter).

5) Though my body can be babied, that can quickly lead to overconfidence in my abilities. I hosted a friend's party, and then tried to also go to coffee the next day. I discovered that my maintenance program doesn't work so well among company, and was quickly drained to a point beyond my liking. I paid for it in spades!

6) I have reached out to one of the resources listed on the ticket to work page... *knock on wood* Hopefully things will go well and I can earn a little to keep the wolves at bay!

It's a scary time being in a position like this... Too many healthy people are hurting which means the sick and the desperate really get less. I hopefully can find some way of working from home to make enough to get by if I'm frugal & carful.

I'd be lying if I said I wasn't scared though.

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!

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

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

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

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

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


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

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

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

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

My Secret Triumph

I've read a lot of posts in online communities for people who have chronic health issues. One common complaint I hear is how other people don't understand how hard it is for us to do even the most simple things. In their frustration at their loss of ability, they feel sorry for themselves. I've been there. I've done the moping. I totally understand. Getting a chronic illness sucks! But there's a way to flip that around. There's a way whereby we can look at our struggle over easy daily tasks and we can realize that we are MIGHTY. By the very fact that it is more difficult for us, we can then take pride in doing even the most mundane things. It's all a matter of perspective.

And that's my secret triumph. Most people have to go out and run marathons, or hike a 14,000' mountain to do a great thing. I just have to get the laundry done (now there's a Herculean task!). People don't understand how difficult that can be. Which is fine with me. I can take pride in it myself, knowing that I have been stunningly awesome every time I can get that simple task done. Oh, sure, for them it's easy. But then, they have an easy life without chronic illness. That's no big deal for them. It is for me... and for that reason, I can have an amazing amount of pride in myself, just for getting through my day.

I don't have to write the next great American novel. I don't have to conquer the elements in some great quest. I don't have to discover the cure for the common cold (beer) or find the cure for cancer (cannabinoids). I just have to wake up in the morning and take my pills on time. Right then, I've already saved a life for the day: my own! Everything after that is gravy.

If I am able to achieve some semblance of "normal," then that's incredible. I have to obey a lot of very strict rules, and do some really crazy things in order to reach normal. I have to get 11 hours of sleep on work nights (plus Friday, because I'm usually at my rope's end by then). That means going to bed at 7:30, so I can be up at 6:30 in time for work. It takes me two and a half hours to get ready in the morning, because I first have to get all my medications in my system and get them properly digested before I can do anything else. After they kick in and start working (usually an hour before I notice the effect) then I can get started on my day like a normal person (get dressed, brush my teeth, etc.). By the time I'm driving to work, I've already accomplished a miracle! My day hasn't even started, and already it's amazing.

Then, every day that I'm able to come to work and have people think that I'm normal just like them... that's another miracle. I'm able to manage my symptoms through my day so that they're largely invisible to everyone else. I'm able to complete my work, and no one else is wise to the fact that I'm fighting to keep this up. I'm fighting... and I'm winning. Every day is a struggle, and every day, I work to make it seem like it isn't there at all. My success depends on no one else knowing how hard it is, as though it's no bother at all.

My self esteem comes from my ability to make my problems no problem. It's a lot of work!!! And each and every day I can be proud of myself for my efforts. No one else knows how much I struggle, and I like it that way. The less they know about my disease, the more successful I am. Like the graceful swan who is gliding on the surface and paddling like crazy beneath the water, so too do I make all this struggle look effortlessly beautiful. That's my secret triumph: I make this look awesome.

So, rather than feel sorry for ourselves for all the extra things we have to go through each and every day (not to mention the crazy drama that pops up as a matter of course), my suggestion is take all of that anger and turn it into pride. Yes, it's difficult to the point of tears. But if you can manage it, and do so without the tears, well then, look at how mighty you are! If you can put up with hellfire and brimstone, and do it with a smile and a cheerful attitude, there's no better way to cheat the devil. Be proud of every little thing you can do, because these diseases want to make it so we can't. Hold your head high, just for the fact that you endure. That alone is mighty enough.

But I don't look sick? Thanks! I work very hard to keep it that way. ;)

Everything happens

I have heard the phrase: "Nothing, absolutely nothing happens in God's world by mistake." I've long since lost the urge to punch people in the face for things like that. Usually I smile and nod, knowing that they don't know what they're talking about. Additionally, I know the guy who wrote that suffered horribly at the end of his life and felt very much like a mistake had been made... many mistakes, great and small. But I've figured something out in the past couple of days. It's not that everything happens for a reason. It's just that everything happens. Period.

Reason and meaning is what we bring to life. Gravity doesn't exist so my feet can touch the ground. Gravity was there, and I developed in it's effects. When things happen in our life beyond our control, we didn't put those things in to play. They're beyond our control! By their very definition we couldn't have brought those things into play. These larger effects that we live in, like chronic illness, have nothing to do with any reason. It just is. Any reason and meaning is what I bring to it.

Early on in my disease, I figured out that the pain wasn't punishment. Because I could do everything right, and my head would hurt. I could do all the "wrong" things, and my head would hurt. Intensity, manner of onset, aura, sensory sensitivities... all that was completely random. It was a migraine that just didn't quit. So I knew, after about 6 months, that it wasn't anything I was doing wrong. It just was. And if it just was, then it couldn't be my fault, and I didn't have to feel bad about it.

Yeah, this is not the life I wanted, worked for, dreamed of, etc. etc. But it's some person's dream. There's someone out there, who's got it worse than me, who is wishing they could be me. I've been looking at this whole thing all wrong. Yes, things have been taken from me: reasonable expectations have been taken from me. I had the reasonable expectation of being a mom. Nope. I had the reasonable expectation that I could live a narcotic-free lifestyle. Nope. I had the reasonable expectation I could live where ever I could afford to live. Nope. And I could go on...

The point is, the bar has be raised. I can live nothing short of an extraordinary life. It's impossible at this point. Hell, the fact that I'm alive is a miracle several times over. Most people I know would have to get into to some pretty extreme activities to be able to risk their lives every day. Me? I just have to wake up in the morning. I give death the bird each day that I take my pills like I'm supposed to (barring any sudden accidents, of course).

And somewhere, I heard a voice say, "Good, lord, woman, do you know how stubborn you are? The only way that we could get you to give up on these dreams was if we ripped them from you completely. Otherwise you would have found a way around it! So we had to resort to drastic measures, or otherwise you wouldn't be available for what's coming next..."

"So, if you're frightened of dying and... you're holding on, you'll see devils tearing your life away. But if you've made your peace, then the devils are really angels, freeing you from the earth." -Jacob's Ladder

If I want this life to have the fulfillment that I knew I could get from my reasonable expectations, then it's gonna have to be big, because those were big dreams of mine. It's going to take a lot to fill that void. I don't know what I'm going to be yet, because I'm just learning what this new life is capable of, within my limitations. And that's going to take a lot of time.

To put it another way, right now, I'm only 10 years old. My new body and my new life is only 10 years in the making. I had no idea what I wanted to be when I was ten! I knew what some of my desires were, some of the things I like and don't like. But I hadn't experimented enough, or explored my desires enough to even know what I wanted to do with my life. That took damn near twenty years to figure out!

I remember when it came close to time to graduating from college, I freaked out because I had no idea what to do after that. I had no idea where to go with my life. I even went to a professional counselor, because my panic over my future was starting with my ability to accomplish it in the present. It took years for me to figure out the dreams that have now been taken from me. And I had no limitations at the time!

This time, I'm trying to come up with the same big dreams, only now on "expert level." The only way I'm going to be able to accomplish that is by looking at what was taken from me, and changing my perception of it, so that the loss is in fact an opportunity.

I can't be a mother and know the joys of making a life and raising it in this world. But what opportunities do I gain because I don't have children? My "adopted nieces" are wonderful. But just like my illness, having those girls places limitations on my friend's life. She make take them in stride because it's all worth it...

So what if I looked at the limitations of my sickness and decided "it's all worth it"? What if I did that ahead of time, even though I don't know what that worth is yet? It's easy to see the worth in a child's life and to write off the personal costs and limitations. You know when you have children that the goal is to raise them so that they can then go on to live their own lives. That's even biologically driven. The outcome, hopefully, is your loving adult children. The outcome of my illness that makes all this suffering worth it... that outcome is a mystery.

Right now, I don't know what I want to even start to explore that mystery. But that's okay. This "second-hand life" is only 10. I didn't really start knowing what I wanted until I was around 15, and even that took a lot of experimenting and slogging through experiences I didn't like. I need to go out and find new things, explore, find new loves, new excitements, new spice to my life. I need to give it time.

Everything happens. If I want to bring reason to that, I've got to find a way to make it all worthwhile. My original dream would have made the stings and arrows all worthwhile. But that's the easy answer. What's harder to know is how to make it all worthwhile without that. I have to try...

The easiest way for me to forgive all that's happened to me, the way that I let go of the bitterness of not having the reasonable life I wanted, is by assuming I have been "called" to a more difficult life, but one that will ultimately be filled with glory that surpasses anything I could have hoped for. I have to assume that I don't get reasonable because, beyond my understanding, my talents would have been wasted if I had gone that route. And the voice was right... if there had been even the slimmest chance of me getting the life I wanted, it would have been mine.

So maybe a little faith in the Universe is a good idea... We'll see, right?

"What you leave behind is not what is engraved in stone monuments, but what is woven into the lives of others." ~Pericles

Fighting Bitterness

As I began to look back on 2012 and what I've achieved, I have to admit, it's been a pretty phenomenal year. But suddenly, I was thrown into cognitive dissonance. It's been an amazing year!! So why don't I feel amazing? I struggled for weeks wondering why. I realized that I'm full of bitterness. Full-to-the-brim angst that would put the Grinch and pre-reformed Scrooge to shame. I had to ask myself, what gives? It's all been progress. Why am I still miserable?

It took a while, but when an old friend contacted me, it all came rushing back. Yes, this life is VERY successful, given what I have to deal with. But it's a second-hand life. It's not my primary life. I had that life. I was amazingly happy before this all came crashing to a head, changing my world forever. I had to leave the one place I called home, because the climate there was triggering epic levels of pain, both for my migraines and my neuropathy. That, and all but two pain clinics were pressured to go out of business, and the last to were being pressured to not use narcotics at all. And I need narcotics. My home cast me out. It broke my heart. I still haven't recovered from that.

When I visited Seattle to hook up with my old doctor to see if she could help, it was like all this tension just melted from me. I was relaxed. I was joyful. My spirit was uplifted. Until, of course, towards the end of the trip when the pain started to seep in again. Then it broke my heart all over again. I love everything about Seattle, including the ever-present rain and the terrible traffic. There is a celebration of the individual in Seattle that makes it so no one has the right to judge. To each their own! And glory to it. That was home. I wanna go home. And I can never go home.

I've found where I need to be, and I need to find a way I can make peace with it. However, it seems the more I learn about the character of my new home, the more I don't like it. I've met a few spectacular people, but on the whole, I am not a fan. I'm sure that to several thousands of people, this place is their home. Just not me. And I struggle to fit in, in a place I don't wanna be. Do you think Adam & Eve were able to get over getting kicked out of the garden of Eden? Because it feels like I was kicked out of paradise.

I loved my life. LOVED it. It wasn't perfect, but it was wonderful, and filled with wonder. Ten years later, it's as if I'm waking from a crazy nightmare, only to find that everything that was familiar and comfortable is gone. I can't dance. I can't even be around the music to dance. I can't paint. I still have the skill, and my ability has even improved, but I can't hold a paintbrush long enough---my hands, they betray me. My body betrays me. It has taken what gave me joy and perverted it into an exercise of torture. I can't even get too interested or excited about a subject, lest I blow a migraine. I feel like a butterfly in a bell-jar, beating my wings against an invisible force-field, unable to fly.

I knew what made me happy. Now I can't do any of that. And I can't figure out what to do in its stead! I wouldn't feel so robbed, if I could replace it with something else. That, however, is easier said than done. I spend 30 years figuring out myself and what I wanted. Now, most of that information is pretty useless, if not downright hazardous. I have to come up with an entirely new list of things to make me happy, and I don't even have a clue where to start! Thinking about it sure doesn't help, because all it turns into is rumination on those things lost to me.

Certainly, I don't want to live mired in bitterness, unable to enjoy the success of 2012, but I don't know how to fix this!! Halp!

Pitting the Healthy Against the Sick

I had a troll recently go off on me. I have to say, it bothered me at first. But, bless the strangers on the internet, they defended my position, and even went so far as to deconstruct his argument showing that he was guilty of the sin he was trying to cast upon me. The only thing he proved was how much of an @$$hole he was. But he raised a very interesting point... He believed he had the right to tell other people how to live because it cost him more money on his health insurance. And that, right there, is the reason why "give my people health insurance" is a bad idea. The healthy people have to pay for the sick people. And the healthy people resent it.

This is especially true in this country, where the media claims that any health problem can be solved through "healthy living" (and buying the product they're selling). The medical profession has done a great job of smoke and mirrors, hiding how much we don't know about health. But this leaves people who haven't been through the system with the belief that the system always works for everyone, and if you didn't get better, it's your fault.

And there are some amazing myths that persist in the healthy world, about the would of the sick. They believe that doctors run excessive amounts of tests to cover their @$$ in case of liability. But how can we judge what's excessive and what's not? Right now, there's a huge debate raging on mammograms, whether or not we're putting women through cancer treatment who don't really need it, just because of something seen on the scan. But do we know that's actually what's happening? What if we're catching cancer really early and saving these women's lives? What if we're treating women for cancer, ruining their lives with chemo and other processes, who would have been fine if they were left alone? Are we doing more harm than good?

See... we don't have all the answers. Sometimes, we don't even know the right question to ask. Health care is messy. There is no neat formula to follow that will guarantee a healthy life. We're learning new things about diseases every day... things we didn't think were possible. Mother Nature is a wily character, with lots of tricks up her sleeve. There are more things in heaven and earth than we could possibly imagine. So we don't always get this health stuff right.

Then there's human error...

All told, as many as 98,000 deaths occur each year due to all kinds of medical mistakes--the equivalent of a fully packed 747 crashing every other day. According to a congressionally mandated study on Medicare recipients, during 2008, 1 in 7 hospital patients experienced at least one unintended harm that prolonged his or her stay, caused permanent injury, required life-sustaining treatment, or resulted in death.
(14 worst hospital mistakes to avoid - NBC News)

And what about when the treatment is worse than the disease? CT scans are useful in the early detection of lung cancer, but the CT scan itself causes cancer.

The risk of developing cancer from the CT scan itself isn't trivial. A recent analysis published in the Archives of Internal Medicine found that a single chest CT scan exposed patients to the radiation equivalent of more than 100 chest X-rays, and that at age 60, an estimated 1 in 1000 women or 1 in 2000 men would eventually develop cancer from that single scan. (Participants in the lung cancer screening study actually underwent three consecutive annual CT scans.)
(4 reasons to not be screened for lung cancer - Common Sense Family Doctor)

And ultimately, the problem is that "Much of medicine exists in a grey zone where there is no one right answer about when to treat and how to treat. That is why you need to figure out what applies to you and what doesn't and how you weigh risk and benefit." (How to Talk to Doctors - Freakonomics) But that doesn't work well if someone else is footing the bill. It especially doesn't work well when cost-creating behavior is "rewarded" with health care, and healthy people are "punished" for their good behavior (losing money on health insurance and gaining nothing in return).

This results in a dangerous situation. Healthy people believe they're in the right, and that sick people are in the wrong. They believe that since it's their money, they then have the right to tell me how to live. And why not? My behavior costs them money. Suddenly there is a huge incentive for them to be all up in my business---how I eat, how I sleep, the risks I take (riding a motorcycle), and all the other choices I make in my life that could affect my health. That's now their business, because it's their dollar on the line.

And you'll have to pardon my tin-foil hat, but I also don't like the idea of the government being all up in my health care either. It means the government will track me from cradle to grave. Unlike most people who just need a yearly physical, I require at least one doctor visit per month. Why? Government regulations that are already in place require it. Why? Because of the War on Drugs (and what a huge waste of taxpayer money that is). And do you really think the government cares how much money it's going to cost you? It doesn't hurt the politicians when your health care insurance costs rise. And what's going to happen when people complain? The government will step in and create laws trying to force people to be healthy. They will restrict freedoms all in the name of controlling health costs. It's already happened in NYC. (NYC Super-Sized Soda Ban: Now in Effect - US News)

1% of the people account for 30% of all health costs. "One patient alone racked up $3.5 million in medical bills over a five year period." (Zakaria: 5% of U.S. patients account for 50% of health care costs - CNN) And what's the easiest way to cut those costs? Let 'em die. Kill off 5% of the population and our health costs drop by half? Do you really think with numbers like that, that there's an incentive to treat these people and keep them alive? Don't kid yourself. Health-cost-related deaths are already a reality in the U.K. (Top doctor's chilling claim: The NHS kills off 130,000 elderly patients every year - Daily Mail)

You'd think with my health care problems and costs that I would love free government health care. Sure, it helps me. In a big way. But at what costs? If it's at the cost of my freedom and privacy, and possibly my life, I'd rather not. But that's where we're headed anyway... And it terrifies me.

No Happy Thinking Required

I'm bringing this post back from the vaults, it's a post from the very early days of this blog, when I had little exposure. Now that a few of you are listening (*waves*) I'd like to revive this piece.

First, let me introduce you to this internet gem... (edited for work-safe content)

A 23-year old medical student makes lists of all the tasks that he must accomplish each day. He spends hours studying and refuses to go out with his colleagues even when there are no tests on the immediate horizon, preferring to spend his time looking at specimens in the laboratory. He keeps meticulous notes during all his classes and prefers to attend every lecture, not trusting his colleagues to take notes for him. He is doing well in school and has a girlfriend who is also a medical student. Which of the following disorders does this student most likely have?
A. OCD
B. Obsessive-compulsive personality disorder
C. Obsessive-compulsive traits
D. Schizoid personality disorder
E. Paranoid personality disorder
[and written in] F. F*** you, that sounds totally normal. A**hole.
[Full article: http://www.globalnerdy.com/2011/05/04/thats-not-ocd-youre-just-a-slacker/]

Now, let's look at this little gem picked up from a site offering professional services (yes, for money) for coping with chronic pain ...

Catastrophic thinking involves magnifying a negative situation so that it seems more negative than it is, worrying and ruminating about it, and holding pessimistic beliefs about the future. It makes coping with pain more difficult.  Here are some examples:

“My back is killing me.” (magnification)
“I can’t stop worrying about what my headaches might mean.” (worry and rumination)
“No treatments will ever help me.” (pessimism)
“My life is ruined because of my pain.” (magnification)
“I spend most of my time thinking about my pain.” (worry and rumination)
“I’ll never get better.” (pessimism)
Catastrophic thoughts don't help you cope with the pain.

*rolls eyes* Here's my take on the above:

My disease is killing me. I carry an emergency shot and wear a medic alert in case it tries to suddenly, which it has. Ain't a magnification if it's true. And I have to remember how fragile I am so I can act with the appropriate care. That's just responsible.

If I stopped "worrying" about what my headaches might have meant, I'd be dead now, thanks. I'm going to continue to "worry" about my symptoms, because symptoms mean there's something wrong, a**hole! (to steal from the line above...)

No treatment is possible right now. That's not pessimism, that's just a fact. Soon as that changes, I'll do a dance of joy, but until then, I've got to live with reality... not "someday."

My life has been ruined because of my pain. My career? Over. Finances? FUBAR. Credit score? Ha! Having progeny? Not possible. Scars? Lots. Irreparable damage to my body? You bet. That life? Gone. I will never be the same. Again, not a magnification if it's true.

I do spend most of the time thinking about my pain. But that's because I'm usually IN pain. I use denial as much as possible, but I can only do so much of that safely. And there are other responsible reasons to think about it even when I'm not in pain. Worry and rumination aren't inherently bad things!

I'll never get better. This is both true and not true. I'm not going to get better but I can live better. This is a degenerative disease. The only thing I can reasonably hope for is better management of my symptoms. But it's like throwing a wet blanket over a radio: sure it muffles the sound, but the problem is still broadcasting loud and clear. That's realism, not pessimism.

*sigh*

The problem with these well-meaning sites is that there are going to be people, like me, who look at that list and think they're failing somehow because they can't get to these so-called benchmarks of psychological health. But it's not a failing of ours... it's a no-win situation imposed by our disease. 

So let's try rewriting that list a bit more positive-realistically...

My disease is killing me, but it's been losing so far! Ha!

My symptoms may mean something important. I will trust my intuition and work with my health providers to create a constructive plan in addressing them. 

No treatment may ever help me, but I can keep an open mind and give new ideas a chance to work. Even if no treatment ever does help me, I can say that I tried and find other constructive things to do with my life in the meantime.

My old life was ruined by my pain. So I'm making a new life that thrives despite the pain.

I may spend most of my time thinking about my pain, but I make sure that it is within reason. If it is to prepare for, manage, prevent or resolve my pain, that's responsible thinking. If it's to look for new opportunities or advancements in pain treatment, that's okay. But I will make sure I also have information on current events so I can keep up with polite dinner conversation.

I'll never get better, but I don't have to. I can do the best with what I've got left and make this look Awesome.

I lived for years without hope. Hope can be a liability when dealing with a chronic illness. I got tired of hoping this next drug would work only to be disappointed time and time again. My heart would break each and every time the treatment failed. It became too much.

So I said: Screw hope. I don't need it. I don't have to believe in these pills to make them work. It's not like in Peter Pan where I need happy thoughts to be able to fly. All I need is tenacity. All I need to do is not. give. up.*

And the strangest thing happened... I improved my situation anyway. No hope or happy thoughts required.

There's a story from WWII about the allied forces hearing that the Germans were taking no prisoners; they were just slaughtering everyone. The Germans believed this would have a demoralizing effect: taking all hope away. What soldier would want to fight if it was certain they were going to die? Why fight when there's no hope of a tomorrow?

It had the exact reverse effect. When the allies figured there was no way out, the muscled up. The Germans aren't taking survivors? Well, let's take out as many as we can because that's the best we can do. They fought like tigers.

I say, so what if the situation is hopeless? That just makes me standing up to it that much more awesome. Yeah, this disease is big, scary, and frequently totally overpowering. It sucks. It's unfair. It's only gonna get worse before it kills me. So what? No one gets out of this life alive... but I can face it with dignity until then.

"Our arrows will be so numerous they will block out the sun." - Persian emissary
"So much the better...then we shall fight our battle in the shade." - Dienekes, Spartan 

As recorded by Herodotus, Battle of Thermopylae, aka The Last Stand of the 500

P.S. I learned that you *can* give up, if only for a little while. I gave up for a few months here & there... but I would get tired of that, and eventually get back to researching, networking, reading, etc. And when I got back too it, I found all sorts of wonderful new discoveries in my absence. So don't feel bad if you have to give up for a while. You can't stay at the front all the time.

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.