Book Report #HAWMC

My favorite book at this point in my life is: Ownership Spirit by Dennis R. Deaton. This book is incredible. It opens by teaching the Owner/Victim Choice. continues by explaining Our Essence, that there is a difference between who we are and the choices we make. "As human beings, we each have a body; but we are not our bodies. We have emotions, but we are not our emotions. And, we have feelings, but we are not our feelings." This book is brilliant. Check out this bit in the chapter "The Thinker of Thoughts":

When we encounter setbacks or loss, we can learn to resist our almost reflexive Victim thoughts like, "Oh, no; here we go again," or, "Why does stuff like this always happen to me?" We can learn to open up the mental interpretative gap and enumerate options [read: we can detach and list our options]. ...When my knee-jerk reaction takes over and I sense myself turning to the "why me" laments... I say to myself, "Stop. What are your options here, Dennis?" The "stop" breaks the negative monologue. The follow-up question... triggers a constructive line of questioning.
[emphasis mine]

I love this bool. I love it because not only is it a call to arms to get up and take responsibility for our lives, but it recognizes that this stuff is difficult to do, and that tough decisions need to be made every step of the way to see the success we want. And this book teaches how to deal with ourselves and our own insecurities that will crop up along the way.

We can either appreciate what we have and build on it, or take it for granted and lose it. "Exercising Tough-Minded Ownership does not guarantee that every poignantly challenging experience will turn out to our liking. But, it does guarantee the way we will experience the [event] and it does determine the degree of strength we will leverage during those times." There are no Polly-Anna's here. This is realistic optimism at its best.

Along those same lines, everyone should watch this TED talk. It talks about how important it is to hold on to who we are no matter what happens. If you haven't tried this exercise before, do so now. Write out 20 sentences on a piece of paper starting with the words "I am..." and finish that sentence. Force yourself to only write positive qualities or qualities you are proud of in yourself. Do not finish any of those sentences negatively. This will help you identify the qualities you find important in yourself. And it will help you remember who you are, no matter what happens to you or the choices you're forced to make. Because as this video shows, both great success and great failure are as equally disorienting to the psyche. It's easy to get lost out there.

This great talk is called, "Success, Failure, and the Drive to Keep Creating":

[ted id=1983]

If you haven't heard of The Ownership Spirit, go check it out. And remember to always come home. I am your host, Pamela Curtis. I was not paid in any way for these endorsements. You can pick up your copy of Ownership Spirit through this link to Amazon.


P.S. I passed on Fitness Friday, because I don't really stay fit right now. I do have a word art picture, but I don't have any image software to capture pictures right now due to technical difficulties. I promise I'll get it up soon!

When You Don't Get What You Need #HAWMC

How can I #ask for what I #want, when I can't get what I #need? That question hit me like a psychological bomb this afternoon. Mornings for me are generally difficult and full of negative thoughts, and I've learned to just ignore my brain until my morning meds have kicked in. That's just safer for everyone. But this though hit me right around noon, long after my better living through chemistry kicked in. This was a thought explosion that required further investigation. Since today is Blogger's Choice, I'm choosing this: How can I ask for what I want, when I can't get what I need?"

Sounds like the line from a Country-Western song about heartache and loss... And to be fair, it is about heartache and loss. Add a line before it about the season, and it becomes a Japanese Haiku: Morning sun turns frost into dew. How can I ask for what I want, When I can't get what I need? It's a question that's more Goth than Amanda Palmer in a Death costume. It just drips with teen-aged angst and insecurity. Only it's coming out of my head at fourty because my friend invited me to sushi.

The thoughs went like this. Oh, cool, sushi! I could totally be frugal and have something delicious. I'd never think of doing this on my own, what a delightful idea! I should think of other frugal ways to spend time with my friends, because I don't invite them over, and I really should. We had such fun when Mike had everyone come over for drinks. I should be more spontaneous like that. I know I used to be... I wonder ...

Here's where I should have stopped. It's as though I were driving on a mountain road, and suddenly a darkness descended. I could see the turn in the road, but it was too late, the thought had too much momentum, I couldn't turn away from the idea that sprung up next. I swerved to avoid it, but to no avail! Over the cliff I went...

I wonder why I don't do that anymore. (Turn now!) I used to do that all the time when I was younger. (Look out! Swerve to miss it!) I wonder why I lost my spontaneousness? (No good! You're over-correcting!) It wouldn't be too hard to clean this place up & invite folks over. (Too late...) But I'm in too much pain to even make lunch. (We told you so...) How can I ask for what I want, when I can't get what I need? Boom.

And suddenly it all made sense why it was so difficult to take time out to care for myself, or to suggest fun activities, or invite people over. It's not that I don't want to do those things, I do! It's not that I don't have a circle of friends to ask, I do! But there's this awful noise coming off this hole, see... And I'm trying to fill up the hole so that we can have some peace & quiet in here again, but the damn thing won't. fill. up! It's maddening... Hey, can you give me a hand? Grab that shovel...

For all the time I spend lost in thought, there are lots of things I would just rather not think about - what I'm going to wear (if I could wear a uniform and just not have to think about matching slacks & blouses), what I'm going to eat (I can seriously eat the same 3 meals for months...I'm doing it right now, in fact), how to wear my hair (out of my face and off my skin - military cut for a girl? Right here). These things, to me, are things that take time away from doing. I'd much rather do stuff. But so much of my time is spent managing this symptom or that flare, that when I get to times when nothing is going wrong---my window for fun---I usually just spend it exhausted, trying to recover from shoveling remedies into that giant hole of need.

It made me realize, not only do I believe I can't ask for the things I want in life, but I'm also VERY angry at my body. Unfortunately, yelling at it means I'm yelling at me. My body, as much as I would like to think my consciousness is separate, is an integral part of who I am. My body *is* doing the best it can. It's just broken! It can't help that it's broken. And I need to forgive it more. Poor thing, it's gone through so much and been pushed so hard when it wasn't getting all it needed...it's done amazingly well to operate under the deficiencies I've dealt with. It's supported my mind, and my ability to see myself through some hairy situations. It deserves more credit that I've given it. And, boy, does it look good for 40!

So step one: Stop getting angry at my body when it's not doing what I want.
Step two: Forgive my body for not allowing me what I want.
Step three: Take care of my body's needs with gratitude.
Step four: Find frugal ways to have more fun with my friends. (I *do* deserve it, and if I'm careful, it *can* be good for me.
Step five: Continue my work to better my health & function.

Even if not all my needs are met, I can have what I want, if I'm clever & careful. The good news? I'm clever. The bad news? I'm also impulsive. I can still be okay with that combination, as long as don't let my "failed attempts" drag me down. I think that can help me get some of my mojo back. But my big fear is always spoiling everyone's time with my health problems. It's happened many times before, and I know it can happen again, suddenly and without warning. I think I can he careful enough to show myself it is possible to have what I want. Time will tell.

I'll keep you posted! ;)

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!

#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.

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!

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.]

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

What Do I Stand For?

I was sitting with my (former) roommate Mike last night, having drinks, and lamenting my current existential crisis. I knew that I had to figure out my direction in life, what it's all for, before I dove back into work again... because once work hits, I won't have time or energy to even ask these questions to myself. It will be work and managing my health to work, and what's this all for again?! I needed to figure out now, during this break in my contract, what I stand for and what I want out of life. I needed some guiding star, otherwise, what's the point? So Mike told me the story of two women stuck by tragedy...

Both had lost their children to violence: one to a gang shooting, and the other to a hate crime. Both women were obviously devastated by their loss. Neither he nor I could imagine the pain that either of these women suffered. And one woman, justifiably so, was left broken and shattered by the experience. She hasn't recovered yet, and no one blames her, because of her experience. But the other woman used her grief to fuel a not profit organization that turned into the NOH8 (No Hate) campaign. She took her pain and turned it into something amazing for others.

It's not difficult for me to answer the question in that song: "What do I stand for?" That's easy. I stand for the rights of the disenfranchised---those struck by chronic invisible illness, who are disabled by their disease, who can't advocate for themselves because they are too busy trying to manage their own illness, and the havoc it brings. I want to shine a light in the darkness to say, "Hang in there... You don't have to walk this alone. I know what you're going through, I've been there myself. Whatever you're going through---no matter how helpless and hopeless you feel---you still have value to me. You're amazing for what you're trying to survive. Give yourself props!"

What I don't know how to do is work towards that goal and work at the same time. I know what I need to do to get my message out there, but that takes a lot of work... work that doesn't pay. So I need to find a way that I can work for what I stand for, and still keep a roof over my head and medication in my system. THAT is what is totally daunting to me. Trying to figure out how to survive in the meantime... oh, that's big.

But I do have something to stand for, and it's about time I got back to it. I'm not like other people, walking around, wondering what their life is about. I know very much what my life is about. I know very much my purpose. Most people aren't that lucky. I found out that my best friend from college died day before yesterday, and it shook me. He was only a few years older than me. We never know how much time we have on this planet. Time for me to stand up.

Reflections on My Trial Work Period

There are three main things I learned with my trial work period: 1) I cannot work 9-5. I cannot be that strict. My body is to fragile and demanding (especially at inconvenient times). 2) The computer industry mostly doesn't care if you can't work 9-5, as long as you can get your work done. My job isn't shift-work. It's project-based work. 9-5 isn't even a realistic business model for my job. 3) I've still got what it takes to do a great job. The love my work. They want me to come back. They're trying to figure out how to bring me back even now, just a few days a week. But I'm torn.

My main concern is that I'm still very fragile. If I work, the rest of the time has to be spent managing symptoms and spoons. Yes, I can do it, but that's all that I'm able to do. I'm 100% work oriented, and that will make you go nuts really, really fast. We have to be able to "take off the uniform" and "leave work at work." But I don't have time for that. I have to sleep enough to have the energy I need to work. That means everything, including taking care of the house, doesn't happen until the weekends. There's not much time left over for rest and relaxation. I'm lucky that my brother is living here and taking care of most of the chores. I'm sure this place would be a wreck otherwise. I'm not sure I can survive full-time work yet.

I could try to work part-time, but then comes the issue of money. Can I afford my medical care, rent, food, medication, and all that, if I'm only working part time? What are my monthly expenditures, and can I afford only part-time work? The last time I did the math, it didn't add up well. Either I work full time and I'm just barely able to make ends meet (not accounting for debt), or I stay on welfare. There's no in-between. I'd lose my benefits and not make enough money to cover the short-fall.

Then there's everyone here, and everyone that I've helped through the years. If I do go back to work, it would mean I wouldn't have time for you or this. And I love doing this. I love shining a light in the darkness and letting people know: "Hey---you're not alone. Hang in there. Make this look awesome!" I don't want to abandon everyone, and I would have to, if I went back to full-time work.

I have much to think about... your thoughts are welcomed.

[THP] What's My Mountain?

Sometimes, it's really difficult to have direction in life. Should I take this job? Should I sign up for that project? Should I go back to school? It's difficult to know what's going to make us happy. Additionally, our brains are particularly bad at truly anticipating how something is going to affect us. We will predict that a bad event will feel much worse than it ends up being. We're equally poor at determining what will actually make us happy. And that's because only about 10% of my outside life correlates to my happiness. The other 90% is generated internally. Great! Now how do I generate it?

I believe the answer is revealed in a commencement speech given by Neil Gaiman. In it, he talks about never having a career, just having a list of everything he ever wanted to do with his life: write a novel, make a motion picture, make a comic book. He set those dreams up as his "Mountain" and then he made his decisions base on whether or not those decisions would take him closer, or farther away from, the Mountain. He got his first job as a journalist, because that allowed him to ask questions. He could get his answers on how to get further along towards his Mountain that way.



We all have a Mountain in us. It doesn't matter if the idea is big, that's what a Mountain is supposed to be! It's got to be something we can see from far away, large enough that it can attract and hold our attention, even if other things appear on the horizon. A Mountain is something that, after days of trudging a hard path, we can still look up and see that we're heading in the right direction.

That's why it has to be your Mountain, and not anyone else's. If the goal is to build our happiness, then it can't be someone else's Mountain. That makes them happy, not us.

Find Your Mountain
Take out a sheet of paper and make a list of everything you wanted to do with your life. It doesn't matter if it's impossible, put it down anyway. Impossible doesn't matter. The Dream is what's important. We first need to identify what those dreams are, then we can worry about possible or impossible. So close your eyes if you have to and think back to when you were a child, and everything you wanted, even if it's something as fantastic as meeting Spiderman. Just put it down. Did you want to walk on the face of the moon? Be a race car driver? Create your own neighborhood? Breathe underwater? Make video games? What ever came to you in a dream that you thought would be neat? What do you get your hair on fire about? Write it all down. Those are the stones that make up your mountain.

Not Sure? Hampered by Disability?
Don't worry. If you're unsure, or if nothing quite grabs you enough, that's okay. It may be that you have correctly surmised that you don't have anything you're (yet) passionate enough about. That's okay! I stumbled upon what I was looking for. I just followed what seemed like a good idea until then. And surprisingly, all my choices along the way, even though I didn't' realize it at the time, have played their part.

If disability stops you then try to come at the issue from a different angle. Perhaps there's a way to be involved in a new way that accommodates your needs. This isn't always possible, or sometimes it hurts too much to be involved in activities we used to love in a limited capacity. That's understandable and natural. In that case as well, it's probably just a matter of time. You need to explore as much as is possible, and draw from that new things that move you.

New technologies that empower the individual are being designed all the time. Things will become available that weren't before. You'll have new experiences, think new thoughts. Each day, a new beginning.

If you know a direction, excellent. Go there. If not, look inside for who you are, look outside for what you like, and live to experience new things you haven't tried before. It will come to you. You can relax.

I don't have enough money...
Contrary to popular belief, it's not the next big thing that's going to launch you. It's like that old nursery tale about the tortoise and the hare. Slow and steady wins the race. Japanese Kaisen says “Don’t write a book, write a page…” You might not have enough money for the big plan, but you might have just enough to get a small project started that would allow you to showcase, demo, or even kick-start the next phase.

I don't have enough education...
First, find out if what you want to do requires an education. If it does, figure out if it's a formal education you need, or if certificates and exams are more the industry standard. Remember that where you graduate from doesn't always have to be where you started. Figure out where you want to be, and work your map backwards from there, until you're able to connect it to where you are now.

I don't have the spoons...
See if you can delay gratification, and just work on a slower time table. If you symptoms are managed, these things are possible, if we're able to not worry about when it gets done, jsut thatit gets done. We will have to reassure ourselves, however, that jsut because things are slow, doesn't mean they're forever stopped. It just takes a little more patience to see progress.

I don't have enough symptom/pain control...
Then don't worry about a Mountain right now. You're in Epic Battle! You've got other things to contend with. If you're able to do things with your Mountain, great! If not... no sweat! You've got other, higher priorities. Once your symptoms become managed, then you can look at really setting a course again. Notice I didn't say cured.... I said managed. Scientific studies have shown that if symptoms are managed, a chronic illness has little to no negative impact on a person's happiness. In fact, it can even be a benefit. However, if the symptoms are not managed, it can be a living hell that's taking all your concentration to deal with.

Don't worry. Your Mountain will wait for you. It will not abandon you. And you might be surprised at how far you're carried forward despite your limitations, once you get some breathing room and a chance to check over your shoulder. There's the constant feeling that you're missing out on life with an unmanaged chronic illness (sometimes even with managed ones). That's natural. That's because we long to do, when we have not been able to do. But that's like summeritis in the last few weeks of school, then a month into summer break, yelling, "I'm bored!" You know all too well what you're missing out on. So use now to make those lists of all the things you want to do, so that once things are managed, you can pounce on those dreams like a tabby on catnip! Or, if it's too much pain to think about it, just relax and know that time changes things. Opportunities arise from the strangest corners...

What are some of your suggestions, or tales of your experience, in looking for your Mountain?

Previously in this series: Building New Habits, Breaking Old Ones

[THP] Building New Habits & Breaking Old Ones

Part of a Facebook Event called The Happiness Project (not to be confused by the book of the same name... no relation)

Going into this event, it may be useful to know some of the concepts for building new habits and breaking old ones. Some of these are ideas from the book, but nothing here is content from the book, unless specifically mentioned. One Path of Least Resistance is (or what Shawn calls, "The 20-Second Rule"). Shawn uses this guideline to help build new habits, and break old ones. Take "20 seconds" (or more... the more the better) away from any task you want encourage yourself to do and add "20 seconds" to any task you want to keep yourself from doing.

Time and time again in psychological studies, it comes up that one of our very base natures is to do what is easy, or to not do at all. This is as deep as biology, because to rest is to conserve energy, even on a molecular level. What it was for our ancestors, the cavemen, was we needed to rest to conserve limited energy for when we needed to do other things, like run from that cave bear. Activity was done largely in bursts. The same is true of other animals. Do you know how much your house cat sleeps?!? 16-20 hours a day. His wild counterparts aren't much different. We are all wired to mostly do nothing.

So the next time you find yourself sitting on the couch doing nothing, instead of out exercising when you know it makes you feel good... Or why you end up sitting home on the couch playing video games, even though it's far more rewarding to go out with friends, understand this---it's not because you're lazy. It's that you're extremely good at conserving energy. Problem is, this becomes an obstacle when trying to form new, healthier habits.

However, this "Path of Least Resistance" attitude can also be used to our advantage. For example, it's far easier in our minds to "Opt-in" (i.e., "option-in," meaning, the choice was made to include you in the option) rather than change our course of action. Organ Donor registries have discovered in recent rears that the mere phrasing of a question can mean the difference between less than 10% of people signing up to more than 90% of people signing up. That is,

"Would you like to be included in the organ donor registry?"
(Check yes to be included.)

versus

"Would you like to not be included in organ donor registry?"
(Check yes to be excluded.)

It's a big decision! So the easier choice is to not check the box at all. The first example got 10% of people to become organ donors. The second received 90% participation in the organ donor program. Just because it's easier to not make the decision. Do I? Don't I? Do I really need my organs when I'm gone? Do I want them to cut em up before they bury me? AHHHH! I don't know, I don't wanna think about this, now, and I've been here long enough! Huge difference in participation rates.

We can think about this when it comes to our daily lives and make new things easier to make a habit, and things we want to quit, more difficult to deal with. Shawn tells the funny story of sleeping in his work-out clothes, because it was more of a pain to change out of them that it was to just go with the flow and put on his running shoes and exercise for the day (exercising in the morning has particular benefits to the mind -- buy the book for details).

On the flip side, if there's a habit that you want to stop, make it more difficult to engage in that habit. Say you want to want to watch less TV. One way to accomplish this would be to remove the batteries from the remote controls and put them in a drawer. Even the small act of adding that much time to watching TV (first I have to find the batteries) can be dissuasive enough, especially if you've left a book you want to finish right by the remotes. That makes the path of least resistance reading a book, rather than watching TV.

---

In moving forward with your Three Good Things, try to make this exercise as easy as possible. If you're on Facebook, this is as easy as joining The Happiness Project Facebook Event (tagged here as "This Happiness Project"), and you'll get a daily reminder to post your Three Good Things (plus Blogging/Journaling reminders on Sun/Tue/Thu). If you're not a daily user of Facebook, or you would rather participate on paper, try leaving a notebook on your pillow so that your remember to write down your Three Good Things before bed. (You can use this trick for your Blogging/Journaling task, too!)

For your Meditation task, find some music you like that lasts for 5 minutes for the breathing exercise, and one that lasts 20 minutes for the positive visualization exercise. (Ah ha! Didn't know you could music, now, didya? Yes, this is perfectly legit, though music without lyrics is probably the least distracting. IMHO. YMMV.)

Right now (in the Facebook Event) we're discussing simple ways for people to do their Five Conscious Acts of Kindness. There are all sorts of great ideas!

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Next up... What's My Mountain?

I'm Working Again!!

Bust out the fanfare and call a parade, I'm working again!! Now, it's not an absolute sure thing. I could collapse under the stress and discover that it's not possible... but right now... oh, things look good! I'm able to control my pain through my medication. No one at work is any the wiser that I have this much going on with me... I got my first paycheck this week. A PAYCHECK!!! It was only a few months ago I was dreaming of having my symptoms managed enough so that I could work, and now... holy cow!!

I didn't think this was possible. I didn't think they had the drugs out there that could take care of my pain and not demolish my mind. They do! I didn't think there was a way to control my nausea without putting me to sleep. There is! I didn't think we could get my migraines to a point where I could work through them. We have! I didn't think there was medication for the neuropathy so that I could be reliable enough to write all day. So far, so good...

I'm pacing myself. I'm taking things slowly and not rushing. I'm being cautious with my body and getting plenty of sleep. Right now all I can do is work and sleep during the weekdays. But that's okay. I get SO much of my life back. I don't have anyone else I need to be awake for during the week, so what does it matter? And as my tolerance for activity builds, who knows??

We still have to battle my autoimmune disease. I need to save up so that I can make it through 4 months of treatment. But holy cow, now I have a way to do that!! I've got 9 months... nine months of training wheels, where I still get my SSDI in case this all suddenly falls apart on me again. I think I'm able to keep my Medicare longer, but who knows with this whole Obamacare...

And I realized today that for the past year, I've been able to shower standing up, and only when I was with migraine or the stomach flu did I resort to sitting in the tub! That's HUGE!! That was things started getting scary for me when I originally got sick---I would get too dizzy in the shower and would risk passing out if I tried to stand. It's been over a decade, and I'm now able to shower like a normal person again!!!

*LOL* Oh, but there is a mountain of debt awaiting me. I'm pretty sure it's about the same price as a house (the whole house, not just the down payment). That is daunting. But thankfully, I have a lawyer in the family who might be able to help me restructure my debt. Oooof... that's a huge problem of success: cleaning up the wreckage of my past!

But now I get to clean up the wreckage of my past! Now I can start to be a responsible citizen again! I need to pace myself in this area too, because trying to do too much too fast can leave me broke. I need to be responsible with my finances, of course. However, now I'm not making a wreck anymore. (So far... training wheels, and we'll see...) I'm a really real adult again! I don't need help. I can accept it if its offered, but I don't need it anymore. I can take care of myself!

At the beginning of this disability I was in so much pain I didn't know how I was going to survive, let alone get back to where I was. There were several times where I almost didn't! That was scary... I was lost, deep in the wilderness of chronic illness. Am I out of the woods? Maybe... signs are pointing to yes...

HURRAH!!!!!!!!!!!!!!

Thank you everyone for your prayers and support during this time. I'm still nervous about my ability to do this, but I know how proud everyone is of me, and for that... bless you. I've felt so worthless and miserable for so long. It's tears of joy now when I choke up. You believe in me, and that means so much. THANK YOU!!

#NMAM "Day Dream Believer"

Today's blogging challenge for migraine awareness is: Describe your dream day, without a migraine to hold you back. Before we start, let me tell you that I hate this exercise. I don't want to think of how my life would be without migraines. All that's going to do is remind me how much my life is not how I want it. I can't be encouraging feelings of envy like that! I've got to deal with life how is is, not life how it isn't. And life how it is, is difficult enough!

I wanted to grow up, graduate from college, settle into a nice career, get married, have children and raise a family. A simple, accomplishable dream, right? Apparently that was too big of a dream for me. I was able to graduate from college, but I had to switch my major when in the middle of my sophomore year. My studies got interrupted by a ruptured cyst on my ovary. In my Junior year, I caught a series of sinus infections and flus that had me bedridden for months. The only thing that saved me from having to drop out was that I had switched to and English major that wasn't dependent on attending class every day. (My grade was determined by two papers---one at midterms and one at finals. That left a lot of time for me to baby myself and get through.)

I settled into a nice career: I was able to join my English major with a love of computers and become a technical writer. It made good money, and it included a lot of contract work, where I could take off time to raise a family, and not have my income hurt too badly when I decided to return to the workforce. Except that I started getting sicker and sicker. Getting to work from 9 to 5 was becoming impossible. I had companies who would allow me a flexible schedule, but I had to stop working when the migraine went to an every-day ordeal (despite all medical interventions).

I thought I had found a nice man to marry---my college sweetheart. Sure, things hadn't worked out when we were kids, but we were adults now with new perspectives. He'd become a responsible Navy man, like my father. I'd realized that I'd lost a good thing when I had it. We decided to get married, but that was also right when my illness made me unable to work. All our wedding plans got thrown into disarray. We ended up canceling the whole thing, because I just couldn't manage... anything. All of our money was going towards my medical bills, and we still weren't getting any answers. I didn't want to remember my marriage as the time I was sick, and we both thought I could get better. We figured it had to be soon. I'd already been through 9 months... surely a migraine couldn't go on longer than that! But we were wrong.

It soon became apparent that I wasn't getting better. The money was running out. I would need his insurance and income, so we ended up eloping. No white dress... no friends and family... we had to borrow our witnesses from the next camp over---strangers to us, who were going to attest that these two people should get married. Yeah... that should have been a sign. But I was too sick to really pay attention to any omens that didn't involve my own body. The marriage didn't last long, as he quickly discovered he didn't really mean the "in sickness" part of our vows.

I dealt with the divorce, and my lawyer mentions how it's a good thing I don't have kids. I knew he meant with my ex..., but I still had to fight back the tears because I was wrestling with the reality that I could never have kids. That was the one thing I had wanted since I was a little girl: I wanted to be a mom. But my disease was having none of it. We had tried for a year to get pregnant, and I never even got so much as a close call. Turns out that my body doesn't even know that's supposed to be a normal part of a girl's life. The tests later confirmed it.

So I have a really hard time trying to dream up a perfect day. I thought I was dreaming up a normal, pedestrian, average life. Nothing too grandiose... I didn't need trips to Paris and Rome. I just needed my little corner of the world and a family to love. Maybe that's where I went wrong. I didn't dream big enough! Maybe I should have wanted the most extravagant lifestyle with lots of money and power, and little responsibility. Perhaps then I would have been "saddled" with a simple life.

My dreams have to include my illness. When I think of a future me, I have to imagine that it includes my disease, and that I have somehow figured out how to manage it. I simply must include my limitations in my fantasies, otherwise I'm aiming for a part of the map I can never reach. (You can't get 'thar' from here!) If I want to be able to believe in my dreams, it has to take reality into account. Otherwise, I may as well dream I'm an elven princess in a Tolkien paradise, with a life span of thousands of years and nary an illness to worry my pretty heart.

If I want to be a "Day Dream Believer," I have to include the pain and suffering. But I can dream that I'm able to get through the pain and suffering, gracefully, nobly, and perhaps even joyfully---experiencing pain, but able to laugh with a free heart anyway, knowing that the pain will pass and life will soon be sweet again. Having friends and family around me who are fully supportive, helping me to rise above the pain and live life to the fullest despite it. That would be a perfect day, indeed.

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

I have pain control!!

This month has been amazing. I have been able to do things that I haven't been able to do since I got sick. I was able to mow the lawn for the first time in ten years. I was able to enjoy a lightning storm for the first time in almost fifteen years. I am no longer a human barometer! I wasn't able to predict this latest round of storms because nothing hurt! My doctors and I have finally found a combination of medications that has me feeling NORMAL again. I'm still in shock. Here's another, "I didn't think this would happen in my lifetime."

We're in the stone age when it comes to pain control. Worse still, we have a "War on Drugs" that casts many helpful medications in a hurtful light. The medication that has given me my freedom back has a bad reputation. But it's a medication with absolutely NO HIGH. I can be on this medication, and it doesn't affect my ability to think or operate heavy machinery. It's methadone, the medication given to heroin addicts, and it works wonderfully on my neuropathic pain. The change has been night and day. I feel like a new person. I'm still in shock, because I can't believe this is real. It's as if my pain is simply gone. There's no side-effects. No fuzzy feelings. No la-la land. Just no pain. IT'S AMAZING.

The only drawback to this medication that I can see is the stigma. And if that's the only drawback, I'll take it! My pain has been under control, and I'm at a very low dose. There's no drowsiness, and the pain control is so complete, I've started doing land-based physical therapy. I was able to exercise for 40 minutes! In the past, at its worst, the pain has been so bad that my physical exercise was restricted to trips to the bathroom. I was stuck on the couch, in pain, for weeks. That was just last year. Now, I'm able to use a stationary bike for 7 solid minutes. Unreal. I'd be a fool to let stigma stop me.

It's not always 100%. I still have breakthrough pain from a number of sources. For the terrible, debilitating, ice-pick pain? I have a medicated lotion that works like a charm. I still have a narcotic medication for the break-through pain, but I haven't had to use it that much at all. The methadone is really doing the trick. That daily, grinding, soul-sapping pain that I lived with every moment, that I had to manage from moment to moment, is gone. I have FREEDOM again. I can make decisions, based on whether or not I want to do them, rather than whether or not it is possible for me to do them. I can use all this time that I've had, sitting on my hands, and actually go out and do things. And I can do these things at the pace of the people around me, instead of cut short all the time, by my body screaming at me.

I went camping. I slept on the ground. Usually I have to specify the type of chair I sit in so that it's comfortable enough for me to sit for more than thirty minutes. Sleeping on the ground?? That's like asking someone to sleep naked, on a bed of broken glass. You'd have to be insane. But I slept through the night, and in the morning, I didn't feel like I'd been run over by a truck, either (which was normal, even sleeping on a mattress). I was able to go sight-seeing, and then I was able to drive us home, which in itself is unreal. Usually the vibrations of the car set my nervous system on fire. If I'm driving, I also get the vibrations through the steering wheel, to one of my hot-zones: my hands. When I lived in Seattle, had a 4-hour drive (behind the wheel) landed me in the ER. I generally don't road trip unless I have to. This time, the travel was enjoyable.

My head is just spinning with all the possibilities. Life has opened up to me. My body still needs time to recover, but if I am steady with my physical therapy, this should happen. With time, I could potentially return to work. I'm practicing by increasing my workload at home, and my house has never been this clean! I have everything organized for the book, and I should be able to start a normal (rather than haphazard) writing schedule again. It has been ten years since I have been able to be this consistently productive. It feels SO good!!! I am able to be responsible like never before. It is such a comfort to my soul.

I want to throw a party... I'M BACK, BABY!!!

But most of all, I get to tell myself: I was right all along. It wasn't that I was lazy, or that I didn't want to work, or that I was afraid, or that I was being unreasonable. It wasn't any ulterior motive at all. It was just that I was in pain. REAL, physical, biological in nature, pain. I wasn't making excuses, or having delusions of illness. I wasn't malingering. It was absolutely real, and the moment we got me the right medication, I got BETTER. And it wasn't me drug-seeking, because the medication that works, has absolutely no high!!

At my party, I'm going to have a big ole serving of crow, for all my haters and non-believers. I'm also going to do the "I told you so" dance. ;^D

Life is sweet again.

Happiness in chronic illness is possible, but essential to that happiness is management of symptoms. If the symptoms are managed, you can learn to live with disease as though it's not there. However, if the symptoms are not managed, then at any moment, without warning, my awareness can be ripped from whatever situation I was dealing with, to the necessity of dealing with a symptom. Disease interrupts anything and everything. It does not care about sleep. It does not care about manners. It does not care about embarrassment. It does not care about safety or responsibility. It does not care. And it, by necessity, makes me not care, too. But it's the disease, not me. It is a world of chaos and vicious whim. Happiness is very difficult to find there. Manage those symptoms, and I am in a different world. The difference is heaven and hell.

The key to walking through hell is: don't stop.

#HAWMC - I learned it the hard way...

"It's not the mistakes we make that matters.
It's out recovery from them that counts."
-Deng Xiaoping

Some of the beliefs we hold play a significant role in our lives today because we learned them the hard way. According to human nature, we will make mistakes throughout our lifetime. However, more important than the mistake itself is what we do when we realize we have stumbled. Sometimes, it is tough to address our slip-ups and move ahead. But it’s necessary in life. So for today’s prompt – what’s a lesson you learned the hard way?

I tell ya... some days it seems like I've learned everything the hard way. I never was someone to take anyone's advice---I wanted to sum up a situation myself and come to my own conclusions, thank you very much. I wasn't going to let anyone do my thinking for me. Of course this has led to many a situation where I walked away, more than a little embarrassed, going, "Oh... that's why they say that's a bad idea. Right! Totally got that now." But I still wouldn't trade a lot of my first-hand knowledge. There's learning you get from experience, that no amount of advice can teach.

Question is, is it worth the cost of learning it? The toothpaste can't be put back into the tube, once it's squeezed out. Some things cannot be undone. Some things cannot be unlearnt. There are always consequences, seen and unseen. There are quite a few things where I think... "Ooo... I really didn't need to make that mistake. Yie." But, ya know... it's the recovery from it that counts. Everyone makes mistakes. That's what makes us human. Machines are about perfect. I am not supposed to be a machine. Mistakes are going to happen. A lot. Little ones and big ones. So what? They're not important. What's important is to keep striving despite them.

I've learned the hard way how to read the signs of my symptoms, and how to manage those symptoms. There was no other way to learn but the hard way. They don't give classes on how to successfully manage a chronic illness. No one majors in "how to be sick." These were very personal life-lessons I had to learn on my own. No one else lives in my body but me. How do you teach a feeling? Yet it's in learning those feelings that I can predict what I need so that my disease-caused mistakes are fewer and farther between. I think after my work of 10 years, I'm starting to finally get a handle on how to manage this new, strange machinery, that is my messed-up body. We'll see.

Time will tell.

Responsibility and self esteem

Pushing the Limits, bronze sculpture by Gregory Reade

As I've slowly begun to strengthen, as a result of physical therapy, I've noticed my mood increase considerably. But it's not from the physical therapy, itself, per se. It's because I'm able to do the little things again. You might be amazed by these little things that make me so head-spinningly proud; they're very mundane. But they're things I can do that allow me to be more responsible towards myself. THAT is what's helping my mood. I'm able to do simple things that are a little more responsible, and each time I'm able to add a "good deed", my self-esteem grows.

I have enough energy to fix a meal and put the dishes away afterwards! I can also do a little spot cleaning, so that you'd never know something was cooked there. I can make meals from (relative) scratch. But for years I had to rely on microwave food because it hurt to stand that long. The bottom of my feet would catch on fire withing minutes. I even kept a chair by the microwave so I could rest. Now I can stand long enough to brown meat, make my sauce, finish the pasta and combine it all together. I don't have to rely on frozen food. That's HUGE, and probably a lot better for me nutritionally.

My car is clean. Before now, it was too much to ask me to bring the mail in with me when I left the car. It was too much to ask after being out and about. Whenever I was getting home, I was always near exhaustion or in pain. Maintaining a clean car doesn't fall high on the priority list. Open mail and magazines piled in the passenger and back seats. About a month ago, when it first started getting nice, I was able to clean out snow-drifts of paper. These days when I get home, I don't have all that pain. It's no problem to grab a few extra things on my way inside and maintain the cleanliness of my car. My hands aren't on fire or aching from the micro-vibrations in holding a steering wheel. Beauty!

Best of all, I'm pacing myself well enough that I haven't reaped enormous costs on the other side! Talk about being responsible! You mean I may actually have a handle on this bag o' bones? You mean maybe I've learned how to read these wacko, random symptoms well enough? Have I really learned how to recognize when I need to rest and when I can push it, so that I can make improvements to body? Wow. Wouldn't that be awesome? Sure, I could push my limits before, but there was always hell to pay on the other side. When we're in the grips of chronic illness, anything we do is robbing Peter to pay Paul, and Paul takes his interest in pain. But now, it seems that grip is loosening on me. Now I push a little, ease off when I notice the fatigue creeping in, I'm able to keep myself uninjured. It's sad that my body is such a dangerous place, but when was the world safe? Perhaps I'm learning to manage anyway, and these exercises will give we more wiggle room moving forward!

I do hope this trend continues. I hope it's not a fluke of the incredibly dry weather we've been having. I hope I'm actually getting better at these things. Because each time I'm able to do one of these little responsible things, a little voice chimes in my head, "Oh, look at what a good girl you're being! You're making a meal like a really-real adult!" or "Wow, look at that, girlfriend! You've kept your car clean for a month now! Fierce!" or as I got to tweet earlier: "#PhysicalTherapy went well today! I got to #levelup & I'm now doing more difficult exercises. Woot! #IamMighty Need a nap low. Lol" You know I'll be prancing like a peacock when I can actually hang my clothes up, rather than just moving them from the clean basket to the dirty basket!

And you may have noticed it, but I didn't talk about this improvement for a month. I didn't want to jinx it. There are so many failures---of drugs, of therapies, of professionals, of ourselves---that we encounter as the chronically ill, that it can be really difficult to believe in something. However, I must admit that my life has improved, maybe not dramatically, but certainly fundamentally. I've been able to do so many of the little things I usually just ignore, guiltily. Now that I can do them again, it's like a weight has lifted. I'm being responsible, things look better, order has been restored where there was once chaos.

Let there be more of this, please!