Thursday, April 17, 2014

TV Matchup #HAWMC

Think of a TV show that compares to your life. What is it? Who would you be, who would your friends and family be? I'm horrible at these because I don't watch enough TV. I've been compared to Grace from Will and Grace (my roomie Mike was Will). And friends in Seattle all said I reminded them of Ed from Northern Exposure (rather than he reminded them of me, specifically, they always noted for some reason! Lol) But otherwise, I don't watch TV enough to know to write this blog post!

So if you'll excuse me, I think I'm gonna pass on today, and pick up with #HAWMC tomorrow! (Maybe go watch some TV! Lol)

Wednesday, April 16, 2014

Wordless Wednesday #HAWMC


This picture comes from the #invisible #disabilities banquet from last year (http://InvisibleDisabilities.org). I didn't know it at the time, but Sherri, wife of founder Wayne Connell, is the one who came up with the term "Invisible Illness" (and they have the documents to prove it too!) and I was lucky enough to be seated with Sherri's mom at the banquet! It was a marvelous evening, and I was so delighted to be able to attend.

It amazes me how many people are involved in this community who you would never think of as sick. Take for example one of the 2013 Award recipients: Kevin Sorbo, or as you probably knew him, TV's Hercules.that's right, the guy who played the strongest hero-of-old has a chronic illness, and one that would qualify him for disability, based on his descriptions of how they had to manage symptoms on the set. (Yes, he was ill during the shooting of that series... You didn't realize he really was Hercules, but for totally different reasons!)

And that's the thing, most of my employers were willing to work around my health issues. I was sick a lot longer than my disability date tells. For the year prior, I was working through migraines and sudden weight loss that left me too dizzy to climb stairs. I wasn't coming in to work on a set schedule, but then my boss was showing up later than me! So it was all good... Until my disease crossed the line and I couldn't even work under those conditions.

If I'm honest, much of my anxiety and discomfort comes from the fact that my disease is invisible. On the one hand, it's a plain advantage because I don't get judged as less capable just by the way I look. On the down side, the expectation is that I am just as capable as anyone else, and I'm not. But I have no way of proving that to anyone else.

So to me, I've already pissed you off... You just don't know it yet, and I can't handle knowing I'm eventually going to let you down bad enough to warrant you yelling and/or judging me as unwanted (even if that never actually happens). That anticipation right there makes me neurotic and in "people-pleasing" mode, that all of the therapy I've been through has been wasted money. And they don't made SSRI that strong! Lol

I have to thank InvisibleDisabilities.org, because it's through their continued work that I am able to be less neurotic about my disease. Because they are spreading awareness of what it means to look good, and still be chronically ill. They've worked with the government, they've done outreach and awareness campaigns... They've really done a tremendous amount for our community. Go pick up one of their glow-in-the-dark (I *love* that!) awareness bands and the booklet: But you LOOK Good! I believe purchases are tax deductible (in the States).

Thank you so much to Wayne, Sherri, and their families for their dedication to this cause!


*(Edited to add:) To be fair, having to "prove" I'm worthy of being called "sick" is directly related to a trauma I had to endure --- I did not have adequate pain contol for 3 of the 4.5 years that I had my migraine. So there is psychological damage there... I think many of us with invisible disabilities can relate to that in some sense. I'm not sure what to do about it though, so I'm open to suggestion...

Tuesday, April 15, 2014

Tag line #HAWMC

Today's challenge: come up with a tag line, & make it catchy. The name speaks for itself: Make This Look Awesome. I chose that name because it was a snappy answer to the frequent "you don't look that sick!" Why thank you! I do make this look awesome don't I? Because of course, we can't judge a person's problems just by looking at them. We have these things called diagnostic tests because we know you can't diagnose just by looking. Oh sure, there are a lot of obvious and apparent causes, but most of what's going on with us humans is going on inside in a world hidden from view. Thank goodness too! I don't want to watch my stomach digest food. It was pretty going into my mouth. That's how I'll remember it!

Make this look awesome... Like the Missouri great, Mark Twain wrote, if you can make it seem like it's better than the best, then folks will pay money to join in.

The truth is, when symptoms are managed, people with a chronic illness are no less happy than healthy people, it's a scientific fact. Which is good news, because chronic illness is unavoidable as we grow older. 96% of seniors have one chronic illness! But there's one key little word in that study that makes all the difference in quality of life: managed. If the symptoms are not managed... Life, the experience of it and participation in it, can be a living hell.

Make this look awesome! It's a battle-cry in defiance of that hell. Oh, sure, we may get sucked down in it, but we fight, and we don't let hell defeat us! Because no matter what pain my disease decides to put me through, if I can just stick the landing, I'm good. We all go through hell, and the world throws the most miserable of circumstances at us. The pain can be brutal, soul-stealing, and terrifying... But ride it through to the other side and there we are: triumphant, radiant, awesome!

It's been 12 years since this whole journey began. I didn't want to be a part of this world. I fought against joining its ranks. But since I'm here, I'll do everything I can to empower my fellow survivors. It's especially difficult for those who once knew what it was like to be on top of there game, able to manage life's difficulties with ease. If I were my mother, I'd have two daughters and three mortgages under my belt by now. My oldest would be 12 in her first year of Junior High.

As it is on my worst days, I feel no better than a 12-year-old, over-dramatic, and desperate for attention! If I were only short enough, I'd dress as a Japanese Goth Lolita. Would you like to hear some of my poetry? On my good days, I'm still that powerful, go-getting woman, with all the skills and wisdom that decades provide. I don't have the Three M's (mortgage, marriage, mommy), but that also means I have the freedom to do whatever I want with my life, and I am by no means done.

Make this look awesome! It's my mantra to live up to, my brand by which I must stand, and how I remember each day to try my best, regardless of what I might face... Make this look awesome! Because if there's no one else, I at least am watching me, and I want to treat myself with the respect I deserve.

Make this look awesome... Putting a positive spin on chronic illness.

What's yours?

Monday, April 14, 2014

Well that's just Crazy!! #HAWMC

What's the craziest thing you've heard about your disease? That's easy: "I'm afraid if I sleep with you, I'll catch your migraines." Yes! The award goes to my ex-husband in the second year of our marriage. It didn't last much longer than that.

When I heard it, I literally had to repeat it back to him. "Let me get this straight..." (If I start a sentence like that, it's over.) "You're afraid that if you sleep" (I made a gesture to my pelvis) "with me" (once more for emphasis) "you're going to catch my migraines??" (Hands on my head so even a child could understand...) And he, with all the innocent earnestness he could muster, said:

Yes.

As if he's just admitted to shooting my dog in a hunting accident.

I was so shocked it was just a beat, but the silence between that and what happened next was also like an eternity. He actually wanted me to believe that. Regardless of whether or not he believed it (which I found highly unlikely), he wanted me to believe it! otherwise he wouldn't have said it. In that pause, all his hopes were riding on me believing that.

I burst out laughing.

He was clearly crushed, and hung his head.

I laughed even harder.

Between breaths, I was saying it again. "If you sleep" *laughter* *gasp* "with me" *laughter**gasp* "catch my migraines??" Ahahahahaha! "You're kidding me right?" *laughgasp* "It doesn't reach that far!!!" Ahahahahahaha!

He rolled over. I left the room.

That was his reason for not sleeping with me for almost a year.

The following month, I filed for divorce.

Favorite Things #HAWMC [LATE]

Today is my list of favorite things... And I've had a surprising amount of difficulty writing this one today. You would this this one would be simple--- everyone has a list of favorite things, right? Or at least everyone will have fun thinking about what are the things that are favorite to them, right? But you see, it's not so much like my mind is a dark alley and you're going to get mugged, more like my mind is that bad part of town where they may not find your body.

I know that someday, big wind come, take this all away. That was the wisdom of an old Hawaiian woman after surviving a horrible hurricane that basically took everything she had, except her life. But she always had a smile, always was quick to laugh. That her life had been shredded was no big deal to her. When asked what her secret was, she answered, Someday, Big Wind come... Take this All away.

Ya know how I finally got pain control? I had spend years going through expensive elaborate nerve conduction tests, MRIs, PET scans, CT scans, bionic devices, the works! All to try and figure out why I was in so much pain. I finally got the right diagnosis and the right medication from a simple pin. A PIN!! You mean after all those tests, all those years spent suffering and on disability, all my problems are solved by a pin?!

I was so angry, SO angry to have it turn out to be that simple. But you can't stay angry once you've got pain control because you're free. It's not worth it to stay angry because this is what you've been waiting for. You've wanted to be able to go all this time, so GO! And I went...

But then this weird fatigue started up. Fatigue immune to caffeine in all it's many forms, fatigue immune to sleep. My dentist commented on my teeth, and I was hospitalized for low potassium, when that's not normal for adrenal disease. Run the tests with an endocrinologist and my GFR came back showing Stage 3a Chronic Kidney Disease. Well, now... That explains the fatigue & the rest!

Now I'm haunted by all the what-ifs... What if they had medicated me sooner. What if I'd been able to work these past 6 years, instead of crippled by symptoms? What if I never had to leave Seattle?

I have to remember: some day big wind come, take it all away. This world is not about what we get to keep. Because we don't get to keep a thing in the end. Do I love my things? Sure! As much if not more than the day I got them. I'm sentimental like that. But someday, big wind come....

I cannot let my love turn into endless grief. I cannot let my anger keep me in the past. When I am free, I must move on as fast as I can. What-ifs never help me. Getting up and getting over it does.

My favorite things? Whatever is currently with me. Nothing more, nothing less. :)

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! ;)

Date Night #HAWMC

I'm supposed to post on #dating & #chronic #illness, but to be honest, I have no clue! My marriage and divorce were both largely due to my chronic illness, and I haven't been able to date since. I didn't really know how in the first place, and now I'm sure I'm clueless. So you don't want my advice! LOL


Thursday, April 10, 2014

And the Winner is... #HAWMC

Today, Ladies and Gentleman, is a prodigious day. I have, against the better judgement of my peers and the wisdoms of the ages, been awarded winner! Ed, tell me what I've won! No seriously, what have I won, because as far as I knew I was only in the running for "crankiest neighbor" and "worst friend ever..."! At least, that's how my acceptance speach would start if I were writing it tomorrow. Honestly, though, I don't like fantasizing about such things. Not because of fear I'll jinx it, though that is part of it... No, my problem is when I get to feeling like this, it's really difficult for me to imagine a time when I'll feel good again. I can't imagine being happy like that right now. I know I was happy on Sunday, I remember that fact. But I can't recall how it felt Right now, I hurt, and that's miserable and scary. Miserable, because I can remember all the times I've felt like crap right now... That's easy to imagine! And scary, because some of this pain is new and new is never good.

According to my counselor, this difficulty in recalling the good times when we feel bad is totally normal. It's a survival mechanism because obviously the last time we felt like this we survived, so let's make sure we remember all those times again so we can get through this next round of it, your brain would say, if it could talk objectively about its own processes. It doesn't matter that all those memories are nightmares, we obviously knew what we were doing, so let's make sure that's all we can think about until we feel better. Well, don't you think it might help if I could think of feeling better so I could feel better? I would ask, if I could talk to my brain... Nah! It would retort, you don't really want to think of something else. You only just just learned how in the last 50,000 years or so. That "feeling" part? That's a much older part of your brain, so it wins all arguments, even illogical ones.

Great... I even lose arguments with myself!

Seriously though, it is difficult to imagine anything good happening to me when I'm in the middle of hosting a pain parade through my cranium. I know I'd be able to play along with today's writing assignment if I weren't praying for my own swift demise (just make it STOP!). It would actually be a lot of fun to imagine just how'd I'd earned something like that. I could really challenge myself to say that I could only win based on something that I am NOT know for at all right now, and see if that helps me imagine new and fun things I could try in the future. The very process of figuring all that out would make me hopeful under normal circumstances.

Under chronic-illness circumstances, all it does is make me ask myself why I screwed up that one time I was nominated, and why does my disease have to steal everything positive from my life? All I had to do was send in an email and a URL. How hard is that? Apparently very... Who knew? But that's the kind of awful stuff my brain will lock onto when I feel physically bad. As if feeling physically like crap isn't enough, I also have to convince myself that I am crap, and this is probably all my fault just because it's happening to me. Of course I have my own brain to thank for this line of thinking, which really makes me wonder if my whole body isn't out to get me.

And the winner for Most Effective Use of Self-Sabotage goes to.... Pam's Body!

Thank you everyone! Good evening, and thank you for coming out. It been such a privilege to work with such an amazing group of organs. Skin, you're always overlooked even though you're the largest organ. You know the levels of pain this project required could not have been possible without you. Nervous System, always the life of the party, your antics really put us over the top this year. Your lightning fast ability to produce special effects is so amazing, it stopped me in my tracks! Endocrine System, your vast hormonal depths are still a mystery in many ways. Your contributions, partnering up with the brain for pituitary disease is legendary, we couldn't have done all this without you! Finally, Brain.... Brain... What can I say? You are the brains of this organization! Seriously, though, your ability to cause anguish is without par. Even the kidney stones are jealous, can you believe it? Do you know how hard it is to impress a stone? And beyond that, you added a deep psychological anguish that showed your true range as an actor. We were on the edge of our seats for, "I am Worthless Because I'm Worth Less," and who can forget how you opened our hearts with, "I'm Single & Deserve It"? My favorite is still, "You Hurt Because God Hates You," but I'm sentimental like that. Thank you again, everyone! As Pam's Body, I cannot tell you how much this award means to me!

Now that I could totally see!

Wednesday, April 9, 2014

Wordless Wednesday 2 #HAWMC

I can't do it. I'm a writer for goodness sake. I write! So these "wordless Wednesday" assignments are knocking me for a loop. I'd rather do the 1,000 words. You want to start counting?

I felt so helpless today. I think that's one of the most frightening aspects of many chronic diseases: the total lack of control over the whole situation. Now, I know there are some people who have been able to rise up like fierce warriors and meet there disease head-on, and they're able to wrestle their disease, through lifestyle change, whatever, back into a corner where it behaves itself. Not so with my disease, and not so with my friend, who is going through such awful pain she can't keep food down.

I've been there--- in a world where there is so much pain, there is only obedience to the symptoms and praying until is passes or until you're so exhausted even the pain can't keep you awake. It's horrific what some people must endure, and our helplessness makes it worse. I want to think of myself as a competent, capable woman. But that's difficult to do when symptoms have us so at their mercy, we are rendered as helpless as infants. That's not a reinforcement that helps a person feel good about themselves, physically or psychologically.

What is fascinating to me is how much different of a person I might be, if I wasn't constantly made to second guess myself all the time. I saw it in another friend last night. He was in a bad mood and I asked if I could let him go and he said yes & apologized pre-emptively, something that I do all the time, because I am so sure that I am disappointing others with my shortcomings. But the truth was, my leaving had nothing to do with him... and suddenly I saw myself and every time I'd apologized ahead of time. Suddenly what my friends had been telling me became clear:

1. My limitations don't matter. We can find a way to make it work.
All humans have limits. We're used to working within limits all the time. We have lightbulbs for when it gets too dark to see, we have cars for hauling us around at speeds that are not natural for us, and we are communicating across the world in near-real time. Why are limitations something to be upset about, even if mine are different & unusual? Being human is all about limits.

2. When I apologize ahead of time, I have forced the situation to be something to be sorry about, when it may all be just fine.
Who am I to decide this is bad? I haven't wronged anyone, so what am I apologizing for, me & my nature? Well, that's a quick road to feeling bad about myself all the time.

3. I'm not unique in screwing up, whether it's from symptoms or circumstances. Just because I feel awful and have awful things happening to me doesn't mean I am awful. Feelings are not facts.

4. No one likes to see their friends suffer. But that doesn't mean we know what to say or do about it, especially if we can't understand what they're going through. It doesn't feel good to feel powerless to help... But people should know that when we're in suffering like that, we know our friends can't really help. Just saying that you hope we feel better soon or you hope the symptoms ease up enough so we can smile again.... Sentiments like this can mean the world. It reminds us there are folks rooting for us to get through, waiting for us on the other side of the suffering.

5. Being on the losing end of a battle with symptoms and simple tasks like holding a spatula can make me forget, quite easily, about my remaining strengths and skills. It's difficult to believe I'm still capable of greatness when the greatest thing I did today was lose in a most spectacular fashion... That's why it's so important to have those reminders, and get those reminders from friends & family, about the things we still can do well, and are still appreciated for, disease or no.

I should go now, as I keep nodding off....

Tuesday, April 8, 2014

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!