Showing posts with label self image. Show all posts
Showing posts with label self image. Show all posts

Sunday, April 27, 2014

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!

Saturday, April 12, 2014

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! ;)

Wednesday, May 1, 2013

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
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.]

Tuesday, February 26, 2013

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. ;)

Tuesday, November 27, 2012

Stop Negative Thoughts

Before I started therapy, my mother used to live in my head. She'd watch everything I did, and provided a constant stream of negative feedback. If I did something wrong, she'd yell at me and let me know how stupid I was for not seeing these consequences ahead of time. If something was wrong, she'd explain to me how it was all my fault, and that this was evidence of how rotten I was. If it wasn't my mother, it was my grandmother ("You dummy!") or my father ("Goddamnit, get your $#!+ together!"). They would scream at me, in my head, all day long, and then made sure to take a thorough inventory of everything I'd screwed up, and tell me all about it as I was trying to fall asleep. It was a brutal mental onslaught. And no matter how much I screamed back at them (in my head), I couldn't get them to shut up.

Finally, I asked my counselor: "How do I get that voice in my head to shut the f**k up?" (I had an awesome relationship with my counselor.)

"I'm so glad you asked," she said smiling. "Most people don't have the courage to admit they have that voice---or voices---in their head. They think it makes them crazy. But that's perfectly normal. Would you like to do some EMDR* on it?"

"Yeah! That's be great."

EMDR, for Eye-Movement Desensitization Reprocessing, is a type of therapy that allows the patient to detach from emotionally-charged memories, and look at them from a less personal point of view. And my counselor had special training for trauma recovery designed in Seattle. And she knew what was coming, because it was something true of all people...

What I discovered was, it wasn't my mother, or my grandmother, or my father yelling at me. It was ME. It was my inner child, scared and insecure, who had put on Masks of Authority to appear like my mother, etc., so that I would pay attention and be careful. It was actually a perverse form of self-love, where I was trying to protect myself, by getting mad at myself. When I was screaming back at myself, all I was doing was yelling at my most vulnerable self.

So, instead of fighting fire with fire, my counselor gave me a new thing to say:

Hi, I understand that you are trying to protect me, but this is not helpful right now. If you could leave me alone for a little, I'd be able to concentrate on this more, and be more careful. So, could you please be quiet for a little while? I appreciate your trying to help, but I'm okay right now. Thank you.

Later that night as I was setting about some chore, the Voice started up with it's barrage of negative commentary. I stopped and recited what my counselor told me. And, like magic, the voice went away! A sense of lightness came over me, and I was able to complete my chore in peace. I even did a really good and thorough job. So I stopped again and told my inner child:

See? Everything worked out! You don't have to yell and scream at me for things to work out. It's okay. I've got this managed.

Since then, that voice is mostly gone. Oh, sure, it pops up every now and again, but I just remind it of what I told it the first time, and it goes away again. I am, for the most part, left at peace. And it's a beautiful thing.

Try it! Share your result here!

Monday, August 27, 2012

Nervous working...

I'm nervous my co-workers think I'm lazy...I know my co-workers probably think that I'm lazy. I don't roll into work until 9:30 sometimes. I take flex days where I work 4-day weeks or half-days sometimes. But what they don't know is my mornings are explosive sometimes. I may roll in at 9:30, but I've been up since 6am. I've just been trying to get myself right so I can handle my workday.

I have to take pills to keep me alive. These must be taken in the morning. I wake with nausea, every day (part of the nerve damage). I still have to keep the pills down. So first, the nausea must be managed, and there's no telling how long that's going to take. It could be fifteen minutes... It could be an hour. Or two. I've learned to wake up early and give myself a lot of wiggle room. Right now, I'm taking time out---every few minutes writing a few words---as I try to manage this migraine that decided to upset plans this morning. Oh yes, beyond the usual monkey wrench, there's also the occasional uber-monkey-wrench. There is no negotiating with a disease.

So I have to start waking up earlier and going to bed earlier. I've made a new resolution to go to bed at 8:30pm and asleep by nine, so that I can wake up comfortably after a solid night's sleep at 5:00 in the morning. That should give me enough time to wrestle with my illness and still make it into work at a decent hour.

Today, however, is not that day! lol (*ow* migraine!)

I'm just glad that my work is solid enough that they're willing to be flexible with me. I am very fortunate, and very grateful. It was this flexibility that allowed me to work, even while technically disabled, before the Great Migraine incapacitated me. It's what's going to allow me to work now, even though I'm still technically disabled (I can't meet a 9-5/M-F schedule, there's no training or work aids that would allow me to do so, either). But I know that from the outside, this all looks like I'm just able to come and go as I please, and work easy. No one can see that I'm coming and going as my disease dictates, and that I have a second full-time job managing this beast.

As a result, I must be very careful never to take advantage of this situation for personal want. Their generosity and trust, beyond what they pay me for my work, is making this all possible. It's not right to abuse that. So I do my best to act in a state of gratitude at work. I remind myself several times a day: "We're all so lucky to be here..." This helps me stay upbeat (but not overly chipper) even on tough assignments. It allows me the emotional fortitude I need to look at a problem and go, "We'll figure it out, don't worry," rather than any number of negative responses. And I hope that makes up the difference that I can't keep a good schedule.

But of course, I still worry that they're not going to be happy about my irregular hours. What I should probably do is relax, because nervousness is not going to help the situation. Here's the self-talk I'm going to try to practice to see if I can't settle into the grove of things...
They like you. They told you as much. You're doing good work. It was a two month contract, and they're keeping you on indefinitely. It's more than you wanted. Don't let that frighten you. It means you can relax, that what you've been doing so far, they wholeheartedly approve. Breathe. You've done great, kid! You know what they expect, and you know you can deliver. Don't worry about when---they don't! Just do it well like you have been. Go get 'em, tiger!


Ah, yes... that feels better. What self-talk do you use?

Tuesday, July 10, 2012

[THP] 20 Minutes of Happy Memories...

As part of my phase in to This Happiness Project, This week, I'm starting the exercise of blogging for 20 minutes on a positive experience, past or present. The idea is that by activating those neural pathways, I will strengthen my ability to recall happy things, even in times of stress and sadness. I'm going to be trying this for 2 months (along with my usual MTLA posts). What's two months to try out a theory, right? The scary thing is, I'm actually really, really bad at this!

Let me just try to start by listing times that I know I've been happy, rather than pulling up specific occurrences. I've been happy: dancing, painting, figuring things out, coming up with a delicious turn of phrase, learning, spending time with my friends debating or enjoying the outdoors, learning about new people... My life has not been a lot of that until recently. I've had ten years of my life not being that. Let me shake off the cobwebs here!

I had a great night Monday night. I went out with a friend with drinks where we were able to share some deep, meaningful conversation, have some great laughs at our own expense, and marvel at the wonder of the Universe. I always love conversations like that, and I'd like to think I'm spoiled by the number I've been able to have in my life. It's conversations like that, that renew my charge forward. I got a great line too: "I don't know whether to thank you, or smack you, for being so right." What can I say? I recognize my kind...

We completely lost track of time. That's how good the conversation was. It was supposed to be drinks to beat rush hour and it turned into, "I needed to be home in bed a half hour ago!" We noticed it got dark, and then kinda forgot about it, until: Oops! Still, he's got a new book for me to read, and it's one whose principles seem to actually work... and it's an ebook no less... Pretty spectacular. I enjoyed my energy drinks, he had his Guinness, I ordered some steak and fries. We talked about the behavior of people and positive attitude training, and how hard it is! Oy, this is a lot of work. But when you see it pay off so quickly, it's like ...man! Give me more of that!

If I miss a day, I know from past experience that the best thing to do is don't think two things about it, but apply yourself next the next day. New habits are difficult, and this is about progress, not perfection. This is about happiness, not getting things right. This is about enjoying this and not beating myself up, but going, "Yup. Happens to the best of us. Keep going. It will become habit soon enough." Everything has a learning curve, even if the instructions are understood. If we do everything right, all we're doing is going through the motions. It's only in recovery that we learn how this stuff is really done.

I had to start my 20 minutes over because I became a Negative Noodlehead two days running. I was ready for a fight, a struggle. I wasn't ready to relax and remember happiness. But I've started over until I was able to think of something, even if it was just Monday, and get some positive experience down on paper. Yes, I am coming out of a dark time. There were moments of brightness in it, but the daily pain would steal the enjoyment away, much like a screaming child can make an otherwise enjoyable plane flight a living hell. (My sympathies to parents who travel!)

I had happiness before then, but that's trying to remember a time before I got sick, and all I end up doing is seeing the sickness pop up in my memory, so I'm going to try for more recent times when the illness was there, but managed. That's only been a few months, but I've been able to go camping since then and even rode a dirt bike! I can tell about that next time. My 20 minutes are past up!

Thursday, July 5, 2012

[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!


Next up... What's My Mountain?

Saturday, June 9, 2012

#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."

Saturday, March 31, 2012

How to be happy being broken...

There is no way to insulate ourselves from mistakes. You can memorize everything, you can graduate magna cum laude, and get more degrees than a thermometer... You will still make mistakes. No one is immune. There is no vaccination. There is no pill to make you perfect. Stand up, and know that you are enough anyway. There is no formula for a perfect life. In fact, did you know that there are two types of happiness?! (You do, but you probably weren't even aware of it.) And most of how we go about happiness is all wrong. We go for happiness-in-the-moment, when we should be going for happiness-in-the-memory.

What's amazing (they've measured this), is that my happiness-in-the-moment can be greater, but it's my happiness-in-the-memory that is more important to my overall sense of well-being. That is, I can go through a terrible experience, but if I'm able to remember it in a positive way, it gives the whole experience a feeling of happiness. And it's this memory of happiness that is more important to how I rate my whole life as whether it's happy or not. Conversely, we can be happy for something in the moment, but if we don't remember it in a happy way, it can spoil the whole experience. We know this already. We have a phrases for it: "buyer's remorse." ... "the Honeymoon period" ... "it seemed like a good idea at the time." I can be absolutely thrilled in the moment, but if I remember it in a negative light, all that momentary joy is meaningless. And we can be enjoying and experience and having a grand old time, but if it's ruined at the last second, the whole experience gets ruined. We were happy for 99% of the event. But that 1%, because it was the last one percent, makes or breaks all of it.

Isn't it funny how our minds work? Here's the guy who did the science behind it:



There was a skiing trip that my family got to take one year where everything went wrong. Our plane was delayed by several hours so we didn't get on the ground until around midnight. We were all kids at the time, so we were exhausted. When we finally piled into the rental car, the first one wouldn't start. So we piled everything out, put it in the next rental car, only to discover once we'd left the lot (of course), that the gas gauge didn't work. Third rental car, and we're finally on our way, only to then go through so many other mistakes and injustices on the trip (the hot water heater in our unit self-destructed, the replacement unit they gave us the front door wouldn't close...) that it just got funny. It was so absurd, and so much went wrong that we ended up laughing about the whole thing by the end. It was something out of National Lampoon's Family Vacation. And even though it was the vacation from hell, we still laugh about it to this day. At the time we were miserable. We've been happy about it ever since.

I hold the power to be happy about all my memories, if I want. There are certainly some bad memories that should probably stay bad. Hot does still mean hot, and fire burns... But even if the experience was terrible, I don't have to remember the experience terribly. College was an awfully hard experience for me, constantly filled with stress, financial worry, poor health and near-constant performance anxiety. But I got through. And I can look back on that whole experience proudly, even if I was a wreck at the time. Same goes for my health experiences. They're awful to go through! But when I triumph on the other side, I can look back and be proud of myself for going through all that. I have very visible, bright, white scars on my face from battling MRSA (it nearly killed me). But I never hide those scars with make-up. You should know I went through battle. I'm proud I survived. The scars tell that tale.

I can even help write this story of happiness ahead of time. I can look at my life and imagine, "Now, when I look back on this time, what am I going to be grateful for?" Thinking of my life in those terms, I can set myself up for happiness in the future, and experience a taste of it now. For me, even though I'm desperately trying to get back to a "normal" life, I am going to look back on this time and be grateful for all the research I was able to do. I've had the opportunity to let my curiosity wander and chase after what it finds fascinating, and I have found some amazing things (including the video above). Since I now know the memory is more important than the experience, I can see my life for how I will remember it, and then the experience of it isn't so difficult. Right now, this moment can be broken all it wants, if I can remember it happily, that's what counts. I can be broken in many ways, but if I remember me happily, that's what matters.

How are you going to remember your today, tomorrow?

Tuesday, March 27, 2012

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!

Tuesday, March 20, 2012

How to fake having a real life


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

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

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

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

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

Enjoy the party!

Thursday, March 15, 2012

There is no Over, only Through

For the folks who aren’t chronically ill, think of every time you’ve been injured or severely sick. Perhaps a broken bone or pneumonia landed you in the hospital once. There were doctors and medications and instructions. You did everything they asked, all the while upset that you had to deal with this (rightly so) and wondering, “When, oh, when does it get to be OVER?!” Imagine that time. Remember being stuck in it, and all the things you couldn’t do, all the help you had to ask for, how much of an inconvenience it all was, how people had to be patient with you…

Now imagine all that, but knowing that it’s never going to be “over.” It’s never going to get better. That your body will only get worse given time. Those crutches are staying. Those medications are part of your life now. The doctors and staff at the ER will know more about your life than your hairdresser. You’ll actually hear those terms enough times to know how to pronounce them. People will stop being patient and wonder why you haven’t learned to live with it yet, even though the symptoms feel as fresh as day one, every time. Vomiting always feels like vomiting. Kidney stones always feel like kidney stones. What we do get better at, in the long run, is getting angry at it.

Our disease (literally dis-ease) is something we hate about our life. It’s like being shackled to a monster. We have to drag this ugly, demanding thing around with us every where we go! It’s never not there. We can sometimes forget for a little while (#epicwinning), but it always comes back. We hate it about our lives, and we hate it about ourselves. Even though the disease may be the responsible party, we, the person, have to take responsibility for it. “I’m sorry, I tripped over my disease. I’m sorry, my disease is throwing a tantrum. I’m sorry, my disease is a jerk and won’t let me come out to play…” Pretty soon, I feel like the jerk having to explain all the time…

But it’s really, really dangerous to look at my disease this way. Pretty soon, I’m hating me. And that’s the least constructive place I can be.

My neighbor is involved in mix martial arts and she has inspired me. She's a cute little thing and you never would guess she could kick your butt. I was looking at some of her videos from a recent tournament. How those ladies compete is not a natural way to move. Watching the competition videos with her she would point out her mistakes, "now if I was paying attention there, she wouldn't have gotten me into that lock...". After the tournament, she had mean bruises and a few nasty bumps on her head. But these injuries didn't make her a victim. They made her a bad-ass.

Pain and suffering isn't always a negative thing. If it is pain and suffering we have chosen to accept (as, say, a means to an end) then we're a lot less likely to feel tragic about it. It's part of the process, right? Just the price of admission... We all understand that good things generally have a price tag stuck on 'em in some way. Whether it's enduring hundreds of class-hours for a degree, or working your way up the ranks in the military, or meticulously watching your weight to look good for your 20th high school reunion, we understand pain is a part of life. So isn't it reasonable, then, to say that the pain and suffering of my disease is no different? Pain is pain. It's the same nervous system. It's the same brain activity. So why would the bumps and bruises I get from one activity could be seen as triumphant, and the bumps and bruises of another activity seen as evidence of loss? They get you the same funny looks at first... "What the hell happened to you?!"

I have a scar through my eyebrow from a freak croquet accident (a long story for another day). The doctor who stitched me up told me to tell everyone I was on a secret German fencing team, and to graduate, everyone must leave with a scar. This one is mine. A scar on a woman's face on its own could be something to really be ashamed of, but add the cool story and it becomes mysterious and romantic...

Part of the problem is the frustration. I used to be able to walk just fine, thank you very much. I could leave my car at home, walk 5 miles, go shopping, and walk home again... just because it was a nice day. Now I have to hope that a nice day outside coincides with a nice day inside my body so that I can enjoy the day! And I have to drive. And sitting for most of the time is mandatory. Bah!! That certainly takes the fun out!

I can compare my life now to the life I knew before I got sick, and it will fall short in a lot of ways. My dreams at night tease me with visions of a body that follows my commands, instead of commands me about... I can dwell on all of that and be miserable.

Or, I can envision that I am on a quest to earn my black-belt in illness arts... That the bumps and bruises are testimony to learning process and something to be honored by rather than ashamed of. Yes, I am dealing with a storm of invisible problems that makes it difficult for other people to have sympathy for me. But I don't look sick? Thank you! I was hoping it wasn't immediately obvious. Just because other people have difficulty recognizing my problems and accomplishments, does that mean I should devalue my efforts too? Absolutely not.

I may not be able to get over this. But I can find a way through despite it. I don't have to find the light at the end of the tunnel. I can BE the light instead.

Tuesday, March 13, 2012

When the cards are stacked against you... Reshuffle

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

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

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

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

How the heck did that happen?

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

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

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

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

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

That leaves me with only one answer.

FORGIVENESS


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

Deal the cards. Let's play...

Wednesday, March 7, 2012

Batmanning for health?

You may be familiar with the internet phenomenon "planking" where people take strange pictures of themselves acting like planks. Well, someone got the bright idea to up the ante and they called it "Batmanning": hanging by your feet like you're a bat. My doctors have now prescribed this for my kidney stones. However, I don't have to go to strange places and take pictures of it, but they want me hanging upside-down! Apparently I haven't been doing enough head-stands in my workout... Why they didn't cover that in grade school P.E., I don't know. I think I should write my congressman.

All kidding aside, they really do want me to do upside-down exercises. Here's an illustration of a kidney. The tube that enters the kidney is the ureter. It divides into branches, and two of them you'll notice point downwards. That's where my kidney stones like to form, just like this poor fellow in the picture. And like babies, kidney stones like to move around, flip over, and all sorts of other fun stuff, which in turn causes pain. They are far from smooth, like the one pictured here. No... these stones are sharp little buggers.

My kidney stones are calcium oxalate. But their either di- or mono- and we're not sure which. Since they've now been pulverized into itty-bitty pieces, I can safely pass them without pain, we can collect them, have them looked at in the lab, and then see if there's anything we can do to keep this from happening again. Below is a picture of a calcium oxalate stone. This one is 20mm wide (2 cm). I had two that were 7mm each. Larger than 5mm and the body can't pass them on its own.


How would you like one of these inside of you?

I'm supposed to drink a liter of water, wait a half an hour, hang upside-down for 30 minutes, three times a day. I have trouble remembering how to eat three times a day! So I'm going to rig my bed to be at a slant (another option), but that runs the risk of causing a headache in my sleep. Sometimes there are no good choices, only choices. lol

So more home medical care, including one crazy internet fad, keep up with my water with a dash of lemon (for the electrolytes), and back to the doctor once the analysis is done. The GOOD news is, all the other stuff I was putting on hole (botox for my migraines, a new health shake) I'm now free to get back to. I've decided to put a positive spin on this whole thing by declaring: "I'm magical! I can make rocks with my body!!!" lol

Make it look awesome, baby... make it look awesome. :^D

[Edited to add] No I don't think it helped. The main thing anyone needs to do is drink lots of pro-kidney beverages.

Tuesday, March 6, 2012

When everything falls down, it's an opportunity to rebuild

Ishvari - the Hindu Goddess of Never Not Broken
This one is kind of long, bear with me... I've noticed a lot, with myself, with the people I've counseled, that we have a tendency to rush through solving uncomfortable problems. It's not just habit... We came to this process for a reason. It makes for a quick resolution so our lives don't have to be interrupted horribly. We tend to forget, however, what we're feeling in the first place. We simply say, "I'm feeling X. X is bad. I need to stop feeling X." Wham, bam, problem solved, right? Except that we've forgotten one key step (and I forget this all the time too...). We forget to check to see if the feelings are reasonable, if they're warranted, if it's not just the feeling we need to solve but that there's a larger problem going on. "I'm feeling pain. Pain is bad. I need to stop feeling pain." This can quickly turn into managing a symptom while a larger problem (the one causing the symptom) festers and grows into a crisis. This is true for both physical and emotional feelings.

The one where this stands out the most is fear. "I'm terrified. Terrified is bad. I need to stop feeling terrified." Sure. I agree. But let's also stop a minute, after the terror has been addressed, and look at what got us there in the first place. What caused the feelings of terror? It may be perfectly reasonable. They may not be constructive feelings right now, but we didn't get to this line of thinking because we were delusional. We got there because we've had bad experiences in the past, and this one is starting to look just like that one, and OH MY GOD GET ME OUTTA HERE!!! WE'RE ALL GONNA DIE!!! This is usually diagnosed as Post Traumatic Stress Disorder (PTSD). They call it a disorder, which by their book is true. But that doesn't mean it's bad. We obviously survived that god-awful situation that made us twitchy. We did something right... Is that really a disorder or the voice of experience? So who am I to say that you're not exactly right that this situation looks like it's heading that way? But is that actually where it's heading? Are we sure?

If we drop a brick from a 60-story building, does it necessarily hit the ground? No. It may hit a balcony on the 32nd floor. Someone could stick their head out the window at just the wrong time. It could land on a truck driving past before it hits the ground. Just because the brick is falling, doesn't mean it hits the ground. Just because I know it could go hell-fire-fury bad, that doesn't mean it must go that way. And even though I see the possibility and the possibility terrifies me, I need to remember that I'm not going into this, without experience and wisdom. I'm a medical veteran. Some folks are actual veterans. We've been the dark places, have been broken to serve a horrible necessity, and come back to try to fit ourselves back into normal society, where people can't even imagine what we've seen. That's lonely. But you're not alone. You're elite.

Much of the problem I see is that we don't always recognize our successes. We take our successes for granted: why keep working on it if it worked? On to the next one. We remember the failures: if we're going to avoid it in the future, we've got to beat ourselves up right good so this never happens again.... That can easily lead to a lot of sleepless nights and poor self-esteem, quickly. Mommy clapped and cheered the first time we tied our shoes. We were so proud. Do we still clap and cheer each time successfully tie our shoes? No... we've got this one in the bag. We're an old hat at it. No need for praise, I know I'm a champion shoe-tier. It's when I'm not sure of my skills that I want the reassurance and the recognition.

I don't want you to hear, "I'm sick! I'm sick! I'm sick!" all the time. I want you to hear, "I'm dealing with something new and scary that even my doctor, the professional, can't tell me about very well... I'm scouring the internet because no one can tell me what's going to happen to me, and everything I thought about the world has been turned upside-down!" But that's a mouthful, and it took me over a decade of research to realize that's what I've been trying to say this whole time!

And though it may be silly, I've taken to rewarding myself, like I was when I was a child, when I'm able to do things that I normally can't do because of my illness. I'll clap and cheer, by god. Yes, I was an old pro at that... under healthy body conditions. But now I'm going at this on the expert difficulty levels, so there's going to be a learning curve again. Things aren't going to come as easily. It's going to take more work for less payoff. In some cases, I'm going to have to come up with an entirely different game plan, test it out, and find what works by trial and error. So it's doubly important that I recognize what an achievement it is. It looks the same as the million other times I've done it, but the experience is not the same. Getting through it wisely is what makes me mighty.

Comparing me to a healthy person just isn't fair. To the healthy person! Sure my young friends can run around and hike and zip and play on the mountainside. But they crash for naps afterwards, while I paced myself and could enjoy the whole day. I'm also an expert at functioning when I feel like crap. Their first instinct is to fall out. Mine is, "yeah... what else is new?" So as they sleep, I'm able to have the place all to myself. It goes back to the old Einstein quote: "Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid."

Sure, based against most human activities, I'm no good at those. But put me in my element, and just watch me soar. I never lose my abilities to handle a crisis or keep going when it gets tough. They sleep most of the time, because "my element" are moments that don't come often, and thank goodness for that. I wouldn't want everyone living in my element. That's just too rough. If my being sick means someone else doesn't have to go through this, I'll take one for the team, no problem.

Too often I think we forget this big picture. We forget that it's reasonable to feel scared and abandoned and inconsolable and all that... Just because we'd rather not have those feelings doesn't mean they're always something to be avoided. Sometimes they're things we need to embrace as part of the process. They're important feelings, and they're uncomfortable so we'll take notice of them! But these bad feelings don't have to be the end of the story. They can be a simple chapter in a long book that ultimately ends up well.

All heroes go through hard times. But because we're the audience, it's easy to say, "Hang in there! you can do this! Success is right around the corner!!" But we're not in it. We're on the outside. It's a different story when we're trying to be the hero, and it all looks lost. It's easy to lose heart in the fight. Because some days it difficult to tell if we're in a tale or triumph, or a tale of tragedy.

It's okay to feel scared, hopeless, abandoned, etc. It might not be fun, but it doesn't mean eminent death (I hope!!). What we can do is slow down and take a look at the feelings. What started me feeling this way? Why am I anticipating that it's going to be like I'm imagining? Where's my evidence? Okay, which of those pieces of evidence are valid, and which are not? Which are pieces of evidence that could possibly mean more that one thing, that I need to watch and get more information on? What could possibly change to steer this situation in a new direction? Can I make adjustments to help the situation have a more positive outcome than the time that scared the bejeezus out of me? What are my options here?

What we may find is that we're absolutely right! We have been abandoned. It is a hopeless situation. We are scared out of our minds with good reason. But that doesn't have to stop us. So we've been abandoned. That doesn't make us unworthy or unlovable. So it's hopeless. That doesn't mean we don't give it our best shot anyway! So we're scared out of our minds. It's SCARY. You're having a human reaction. That's normal and okay. It's what you do with that, that counts.

The abandonment may have had nothing to do with us at all! Sometimes it happens, and it's sad. The one the you wanted with all your heart may have abandoned you, but they may not have been able to see a good thing when they had it. And if they can't appreciate you, why bother? The abandonment may have been a gift. Or the abandonment may be temporary: the other person needs their space because they're overwhelmed and they need to leave. Sure it hurts. Absolutely. But we keep ourselves. We can help that hurt go away. We can give to ourselves what we wanted them to give to us, and in that way we're able to get our needs met enough. Abandonment comes in all forms. Whatever the form, the answer is the same: Use that time to nurture ourselves so that we can be ready, whatever the future brings. Yes, we're lonely, but we can remind ourselves what we love about ourselves, and in that way remember why we're worth being kind towards.

We may find ourselves in a hopeless situation. There are plenty of medical mysteries that baffle doctors and end up as tragic tales of suffering and death. If you were sick with one of these diseases and not depressed, I would wonder what's wrong with you. It's normal to feel upset about being sick!! Good lord, you "normal" people have no idea how much you whine when you get sick. You think we whine? Dear lord... If I had a tape recorder, you'd sing a different tune! Lol. I see it in my Facebook news updates. The chronic illness folks only complain when it hits epic levels. Healthy people complain at the first sign of symptoms. "Sniffles and sore throat. Oh, man, I hope this is just seasonal and I'm not getting a cold." Compared to, "Had to go to the ER again last night. Thankfully it was only a 4 hour visit." It's two completely different worlds. You can't compare the two situations or even call them similar. So we shouldn't berate ourselves, on either side. Don't judge a fish on it's ability to climb a tree.

We may find ourselves inconsolable. That's okay too. There is something to be said for allowing ourselves a complete and total breakdown. Sometimes, we just hit our limit and have to stop and rest. When we do, all the emotions that we've been pushing aside because we've been trying to Get Stuff Done, come rushing to the surface. We break down. We feel weak and vulnerable. We may feel, because of all this, that we've failed or we're not up to the task. This isn't necessarily true. It may just be that we've hit our limit and need to rest. We need to take a break and concentrate on something else for a little while, because we're frustrated, feeling hopeless and trapped, and it's driving us crazy. None of that means we're weak or inadequate. No one can stand on the shore and hold back the tide. If you judge a fish be their ability to climb a tree... It means we're human animals and we just found our threshold! Like the govenor on a car engine, we can press the gas all we like... the car is not going to go faster. It's okay to allow ourselves time to stop, rest, think things over without pressure, and try again later. Life and love are marathons to be endured, not a race to be won.

Too often, I feel, we find ourselves in these situations where we're overwhelmed and trapped, where we've run into some life problem that no one could handle but we have to anyway... and we end up feeling miserable at ourselves. The situation was traumatic. So our brain holds on to it, ruminating and going over the scenarios again and again in an effort to try and keep us safe. It's obnoxious at best, and life-crippling at worst. We need to protect ourselves from that ever happening again!!! And because we felt couldn't protect ourselves, couldn't protect our friends and family, we end up feeling like we don't deserve to live. We feel like a failure as a human being. We feel like because we didn't feel brave, strong, or powerful, that we can't handle it it if happens again. This isn't true.

Just as bones can be set, mended, and made strong again, so can our sense of self. We will never again be the person we once were (neither are bones after they're broken), but that's okay. We made it through. That situation wasn't the end of us. And that situation may define us, but we get to choose the definition. Broken? Sure. I'm never not broken. But there's a Goddess of "Never not broken" and she seems pretty cool to me. She rides the back of a crocodile, and she is a warrior goddess. Like the line from the Modest Mouse song, Dashboard, "Oh, it should have been, could have been worse than it had even gone...". The things that I have been through should have ended me. But they didn't end all of me. This is an chance to create a new me that's more of what I like and less of what I don't like. When everything falls down, it's an opportunity to rebuild.

Tuesday, February 28, 2012

Faith in sickness and pain

When we talk about faith, it doesn't have to be about the divine. Regardless of what faith your are, or if you have no religious faith at all, a chronic illness can really test your beliefs. I'm on the fence as to whether there is a God, or gods, or whatever. But that doesn't mean that I have a lack of faith. Faith is still fundamental to human existence. I see faith as the absolute confidence that something is true, even if it hasn't come to be yet. Faith to me doesn't even have to be spiritual. It can be faith that the electricity will work (the bill is paid). All types of faiths get challenged in sickness and pain, and there are several ways to respond. I choose to respond in the way that best benefits the situation.

I have faith in humanity, and faith that people are basically good. Do I know that stranger is good? No... But I believe they are until they give me proof otherwise. If that stranger proves to be shifty, I have all sorts of countermeasures I can use to protect myself. However, when it comes to my faith in my friends, I get evidence that could be seen as "otherwise." Getting sick isolates me from other people and makes it difficult for people to want to visit me. We have a strange aversion to illness and injury as a species. I've seen it happen to myself, to friends of mine, and in other cultures. Sickness and injury, at a primal, subconscious level, are a sign of weakness and something to be avoided. Going really, really primal, it means that you're likely to be picked off by the wolves. Other people will stay away because of that, and not realize they're doing it for that reason. That can really test my faith that people are basically good. We would all like to think that if we got sick or ill, people would rally around us, tend to us, makes us better and bring us back into the fold. But generally, that's not how it happens. I know there is the urge in me, if I can get better/when I do get better, to just leave this all behind and never talk about it again. Go back to "normal" and leave this in the past. I doubt I'll do that (I know too much to forsake those I'd leave behind), but the urge is there. So in this case, my faith is convenient and sometimes contrary to evidence. I will lose faith in that stranger the moment they make a untoward movement. I will keep faith in my friends even with evidence to the contrary, because I prefer keeping my friends.

My faith can be faith that my body will be in similar condition tomorrow as it is today. It can be faith that the floor will be there when I put my foot down. It can be faith that what I'm feeling is real. All of this gets thrown on its head in sickness and injury. Where I think the floor is may not actually be where the floor is. What I'm feeling, whether physically or emotionally, may be a complete fabrication of my nervous system and have nothing to do with reality. And when I wake up in the morning, it may be in a condition that takes me completely by surprise. It's very difficult to wake up and immediately be able to tend to some dire bodily need. And by dire, I mean things like vomiting, severe pain, and what I affectionately call the "splodie butt." But I have faith that my body will work anyway, because it's useless to stay up worrying---which will make me sick---over the possibility that I might be sick. I have no faith in my feelings. I always doubt them and test them against reality. I have neuropathy and PTSD. I know my feelings and sensations are often wrong. I have faith that the floor will be there. I'm not always right, but I'm good at managing the fallout when I'm wrong, so I don't mind keeping that faith.

I have faith that time will eventually change things for the better. Does that mean I'll survive long enough to see that goodness? No... But I believe it could be right around the corner. That's good enough. However, when things start changing from bad to worse, this really comes under fire. At some point, everyone starts to wonder, "Just how long can this go on? What did I do to deserve this?" Limits are strained, broken, or downright obliterated. That can easily be seen as evidence that things are not going to get better soon enough. But I've got to hold on to that faith anyway because the alternative is worthless. I want to be someone who fights until I'm absolutely overwhelmed. I've been at that point where I was so sick I didn't know what was going on, and a team of doctors was fighting to keep me alive. I have sworn to myself that no one is going to be able to say I gave up easy. If my death is anything, I want it to be respectable. And I have faith that I can keep that promise to myself. Is that true? Who knows!? And it doesn't matter. The faith is what's important.

Do I have faith in a benevolent spirit that has some concept of sin and holiness? I don't know that that's true. I do, however, have faith in mystery. Some things work out and we have no idea why. Some things don't work or work only sometimes and we don't know why. There are some things that only work when we're not looking at them and we don't know why. I have faith that there are bigger and stranger things out there than my little mind can comprehend. Could that include a benevolent spirit that has some concept of sin and holiness that is watching over me? Sure! But does it matter? If it matters to you that you go to Church/Synagogue/Mosque, then it matters to you and that's good enough. Me, some days the ritual of prayers helps. Other days, I think if there is such a Higher Power, we're going to go a few rounds before this is all over (so it's more comforting at such times to think such a being is impossible). Some days I think this is all there is. Some days, it's downright spooky. Here, my faith is complicated, complex, and I'm not even sure I understand it myself!

So faith can take many forms, it can wax and wane, and it can be clear as mud sometimes. It's still a human activity that we all engage in. It can be mundane or divine, metaphysical or physical, and everything in between. Injury and illness, pain and sickness, will test faith in a number of ways. We struggle to hold on. Sometimes, we find we have to let go. But I try to do so in ways that enhance the situation rather than make it worse. Sure, that means biting the bullet or dealing with upsets, but that's life, right? We pick ourselves up, have faith in a number of ways, and keep going. How's your faith today?