Intersections

Some editions of the Disability Blog Carnival have talked about intersections. The intersection between disability and feminism or religion for example. I've always had a hard time with these and usually skip those.

But today, today I learned something about the intersection of bipolar and CP that is invaluable to me. I shouldn't go to the gym when I'm manic. But of course I wasn't manic in the least this morning. I got home though and the first thought that came into my head was "I feel like death." Not anywhere near the way I felt like death here, but on that spectrum. I haven't slept in 2 days. And even before then I was sleeping enough but it wasn't quality sleep. I was tired but AWAKE! A feeling I HATE! And when I got home I was both more revved up and more worn out. OOPS...

I've realized that there's a delicate balance of energy expenditure when you have CP. Don't use enough and you won't get good quality sleep. You also won't produce enough serotonin. Your body wasn't meant to be sedentary. Use too much and you'll be nonfunctional. Yes this is true for any human being, but for us spazes the tipping point is more sensitive, the balance more precarious. Ok, not new news, but manic episodes can be like bowling balls, and I realized today that I should try very hard not to nudge the ball towards the pins. A spaz does not fall down gracefully, but rather with a thud :-D

My lack of sleep will gently nudge that ball. Each morning I wake up early pushes the ball closer and closer to the pins. So why tempt things? Why expend any more energy then I have to? As much as I need to go to the gym, my personal trainer appointment was probably a bad idea. As much as I need to keep moving (if I wasn't typing I'd be fidgeting), I need to try to keep still. I need to counterbalance the lack of sleep. Slow down the ball, not speed it up.

~~~~~~~~~~~~~~

I had put in a call to my latest psychiatrist yesterday to discuss something different, but of course said, "I'm going away on Friday and I'm manic. what do I do?" instead.

"When did this start? I just saw you."

"Today," I simply answered. I wanted her to think I woke up this way, not that it started 3hrs before she called. I needed her take me seriously.

But she didn't take me seriously. Not enough time. "How do you know?"

How do I articulate it within a 7min phone call, most of which was spent telling her why she can't prescribe anything a psychiatrist would prescribe as the 1st line of defense. Tried them. Don't work. It's taken me well over an hour to write this post; to gather my thoughts.

All I could think of was "I feel like I was run over by a truck." I told her I didn't sleep for the past 2 days (me get up at 6:45? SCARY) and that I know I won't sleep tonight as I have too much energy. She wasn't any help to me because she doesn't understand the intersection of CP and bipolar. She doesn't understand the presentation of my atypical manic episodes and panic attacks. Heck I did say I was irritable for no reason the other day, didn't I? Although I really don't think this is what that stemmed from.

All I have to say to my shrink is "I feel like I was run over by a truck," and somehow she understands. She doesn't even have to say anything. Just a look. A look that says, Uh Huh. Add in 6:45am for good measure, and she'll say "you're probably right."

But my psychiatrist is the 4th psychiatrist who's told me that 6.5hrs of sleep sounded like enough sleep to her. She's the 4th psychiatrist to not understand that when I say that I need 9-10hrs of sleep I mean I need 9-10hrs of sleep a night. She's the 4th psychiatrist to apparently not have any training in chronic fatigue. Does she need to see me a mess to really understand?

I had 1 pdoc who still didn't understand. The pins were down, but the balls kept coming 1 after another without stopping. Couldn't get even 1 pin set up because they were coming so fast I had to keep my hand out of the way! Still she'd just throw up her hands, blame it on me. Blame me for trying to stop the balls using anything I could think up.

I'm trying to be proactive this time. Catch it before the 1st ball has started rolling. Right now it's just about to drop to the ground. Do something to stop it now! To put it back on the shelf, not down the lane.

So how do I know?

Well, I'm generally annoying when I'm manic, and after not being able to stop talking for the previous hour, and suddenly finding my mind racing about nothing in particular, no racing thoughts, just pent up mental energy, my brain screaming "DO SOMETHING!" I put the 2 together immediately and said to myself, OMG I'm manic! Make it stop now! Just those 2 things were enough, combined with the lack of sleep. Add in some long rambling emails within the last couple of days, and the length of this blog post (taken be about 2hrs to do) and you have the cherry on top!

Now is not a good time. Maybe later? After the 9 days straight where I have to be able to sit through meetings or airplane rides without constantly interrupting people, which I do all the time when I'm manic. OK? Can you do that for me brain? Pretty PLEEZZZE?

I Wish

Most of the time I like the fact that I'm crazy. I may quibble over the labels in my head -- am I really bipolar, or am I just depressed? Is my anxiety a seperate thing all together, or a package deal? -- but I generally like myself. Or at least I generally accept myself. That's not to say I don't set goals, don't want to be a better person, but I've always been at peace with my disabilities. Ask me as a kid if I could take a pill that'd cure my CP would I? And I don't think I've ever in my life said yes. I've been asked this question many times.

I've never said either out loud or in my head that I didn't want to have CP anymore. Maybe I wished I could do things like jump rope, but that's not the same thing. If someone told me I'd have to give up my disability to do it, I'm almost certain I would have said no. Correct me if I'm wrong, but I must have been 6 at the time. Somehow I've always known I'm a package deal.

What's this got to do with being crazy? Well sometimes I get so consumed by crazy, that I let out a sigh and/or an ARGH or a GAAAAHHHHH!!! in my head. Sometimes I say "Why do I have to be this crazy? I HATE BEING CRAZY!"

And then a half-second later I say "Don't say that! You don't hate being crazy!" Please tell me I'm not the only person that talks to herself in her head in the 3rd person...

What sparked this post was I was wondering to myself, why do I chastise myself? Who cares if I decide I hate being crazy? Why do I care? Because if I do truly hate being crazy, then I hate being me, and that's the worst thing to hate. I guess I somehow knew that when I was 6.

So then what do I hate? I hate being consumed by crazy. I hate when my crazy becomes overwhelming. I hate that my crazy holds me back from doing what I want to do, while at the same time I do realize the opportunities it's giving me.

I'm at odds as to whether this is ok. Whether hating these things is the same or different then hating the crazy in and of itself. They're not concrete things to hate like jump ropes. If it is the same thing as hating my crazy, then it's not ok. It's not ok to hate yourself. You're stuck with yourself 24/7.

Is it wrong that I wish my life wasn't so hard, so frustrating, because of my crazy? I don't know, but I do.

I Love Using the Internet for Good

Right now, I'm irritable. I'm in one of those moods where it's everything and nothing. It's things I've complained about here before, and things I won't bother complaining about. I'm Just IRRITABLE! I'd blame it on the mood disorder, but you can't blame bipolar for everything. I think I'l have to blame "human being disorder."

Anyway, one of my new favorite things I discovered a few months ago is using the internet for peer support. And you're probably gonna say, "That's not new, such and such has had a website for 15 years!" But I argue there's a big difference in the value of support from people you actually know.

Where else is there to go for peer support in the wee hours of the night besides facebook? It's using the internet for good.

My November 10th status update from 1am when I couldn't sleep says "anxiety is worse then depression, but better then mania. Discuss." I'm glad I no longer remember what made me so anxious, but I tagged the first 10 people I could think of who identify as crazy and managed to start a meaningful discussion within 6mins.

Then there's my Oct 21st status from 12:17am "has a sudden fear of having a panic attack while I'm sleeping tonight. Not a completely irrational fear as I've had them before. Coping strategies anyone?" I didn't even think to tag people that time, and I still got a response in 2mins. About 25mins later, someone posted an idea I'd used successfully many, many times before, which has always worked. Don't know why I hadn't thought of it first, but I was able to sleep that night.

So I've decided to take this to my blog. What are some things you do when you're irritable that tend to help snap you out of it? Writing this is helping me!

and a very important PS -- I very rarely actually look at other people's FB pages as it fuels unwanted obsessive behaviors, but if you tag me in a status update in this genre, I'll be sure to add my 2 cents!

6 Questions on Passion

I've wished in the last year that I'd taken some time to be reflective / introspective about my life and after spotting this meme on Jay's blog I decided to take the opportunity.

What puts a smile on your face?

Following what makes you truly happy is a wonderful way to figuring out what you were put on Earth for. Think about something that you do or that perhaps you used to do that brings you total happiness!

Furry creatures like dogs, cats and horses, NOT mice or squrils or things like that. 18 months ago I was visiting my brother all the way in California and one of his cats curled up on the right side pillow and another curled up behind my bent knees. I tend to toss back and forth and sleep diagional so it was hard to get a deep sleep while trying not to disturb them, but they put me completely at peace. It's also hard to be at a barn with all the dogs and ponies without being as mobile (and short) as I was when I was a tween. It's hard for me to bend over to pet dogs, and it bothers me that over the years I made a consious decision to make my balance worse. I've been longing to bury my head in my ponies neck, but I've been too afraid s/he'll move and I'll fall over. I wish I didn't always feel like I have to keep my distance these days.

What do you find easy?

What we find easy for us to do, will be related to what we are passionate about. It’s very hard to hate something that is very easy for us!

Information and referal. I always pay attention when people mention resources and love, love, LOVE when I can hook someone up with agencies/services that solve their problems and improve their lives.

What sparks your creativity?

Think about something in your life where you seem to always expand its horizon, always coming up with new, fun, and exciting ideas relating to that subject. Whatever makes you creative is something that you are passionate about.

I haven't been super creative in years, since the last time I had an extended hypomanic episode :( It's sad because creativity is one of the things I value the most.

What do you like to talk about?

Most of the time, we aren’t aware of this. A good way to figure this out properly, is to ask your friends. Ask them what they believe you like to talk about the most, what topic makes your eyes brighten up, and changes your entire behaviour.

I like to complain about the injustuces in my world. The lack of housing vouchers, people like nursing facility social workers who purposely hide community resources, lack of knoweldge of affordable health care, for example. When I'm at On Our Own I frequently talk about depression, whether it's the things I'm not doing like dishes, or the things I am doing, like horseback riding and personal trainer appointments, or the rush I get from activism.

What makes you unafraid of failure?

When you do what you are passionate about, you have total confidence in your abilities. This makes you not worry about failing, because in your mind, how can you fail when you do what you love?

I'm always affraid of failing because I've failed so much in my life that I mostly expect to fail. Sometimes though I purposely go into something with very low expectations, like bowling, or horseback riding. I can't fail when I have realistic expectations.

What would you regret not having tried?

If you were at the end of your life, what would you regret not having pursued? What would you have liked to do, that you didn’t get a chance to?

I deeply regret not going back to school and not having been able to finish my degree when I was so close to being done. I wish I wasn't taking an extended break.

Communication, or, How People See You

So yesterday I attempted to discuss my communication difficulties with my shrink, however I did a crappy job of conveying what it was I wanted help trying to improve, because I have communication difficulties.

So then today I went to OOO, and I was like, well ok, I have to come up with something to talk about, so i might as well ask people how to rephrase what it was I had been trying to say. Except I'm afraid I didn't make much sense as I was kind of tongue tied and tripping over my words.

The thing I'm worst at ... well the thing I'm 2nd worst at, besides cleaning, is communication.

After which 2 people, one who has known me maybe 3 months give or take, the other though has known me about 2.5 years, both told me how great they thought I was at communicating. Well ooook.... my entire family will strongly disagree with you, but ooook...

Sometimes I wonder what people use as the basis for impressions, because I just don't get where this one came from!

Happy New Year!

I'm a Work in Progress: Work, School, & All That Jazz

I work for a non-profit organization that has 5 different locations. I currently work 2 days at 1 location and I'm on call a third evening a week at another which is much closer to my house. Between all of our locations we're open 6 days a week, but the most any one center is open is 4 days. I heard through the rumor mill that my location would be getting a grant to expand and offer more services, and we would be open more days. Yesterday it was confirmed by our executive director that my location would be open 7 days a week, meaning that current employees should be getting more hours and maybe some on call employees from other centers would get permanent hours. Although he wouldn't say anything specific other then that the expansion will begin in February.

This is really exciting news as another shift means a 50% pay increase which will allow me to be more financially independent, feel more like an adult. They're also the perfect hours for me. I don't have to be at work until 1pm, don't have to leave until 11:45am (to get somewhere 30mins away, paratransit, ARGH!), so I have my alarm set for 10am. It gives me an "excuse" for my chronic fatigue to not be perceived as laziness. "I'm never up that early, I work off hours."

I've also for the last 7.5 years wondered how I'm supposed to work enough to be completely financially independent and still have time to do the things that will keep me mentally and physically able to work. Right now I work Fri/Sat. If I can manage to work Thurs/Fri/Sat or Thurs/Fri/Sat/Sun this would allow me three weekdays for horseback riding, massage appointments, shrink appointments, and personal trainer time AND allow me to pay for them. I also have some meetings related to long term care reform that are conveniently held on my off days. Working weekend afternoon/evenings -- MY DREAM JOB!

I wouldn't mind mornings if they weren't so early in the day!

The problem? I want to work & be more financially sufficient but I also want to go back to school and finish my degree. I can't imagine fitting horseback riding, massage appointments, shrink appointments, personal trainer time AND working 24-35hrs/week, plus keeping up with my advocacy work, even if I take 1 class. I can't see fitting in a class with my current schedule without it being a once a week class. Maybe I could fit in a Mon/Wednes late afternoon class or a Tues/Thurs morning class? But when would I have time to do my homework? Would I have to wake up at 7:30am everyday to study for 2 or 3hrs? Would I have to go to the gym from 8-9pm? Would I collapse from exhaustion from constantly running around and getting a 1hr sleep deficit everyday? Because then I physically wouldn't be able to read, study. So would I have to quit working when I decide to go back to school? Then how do I pay for my horseback riding lessons, massage appointments, shrink appointments, and personal trainer time -- the supports that will keep me in school?

Such are the dilemas of life...

Judgement

It's the end of the year. My insurance has an out of pocket maximum, after which point you no longer have copays for visits of any sort or medications. I received a $13,000 powerchair at the end of April, and unlike last year when we met the cap in Dec, this year all of a sudden in the beginning of July my whole family got practically free healthcare. We still had to pay the monthly premium, but we all began thinking up ways to capitalize on this. I continued to go to physical therapy past the point where it was useful, because it was free and a trainer costs $. After 6 or 7 years of talking myself out of getting new AFOs, because most years I've worn them less then half a dozen times, so what's the point, I got casted for a new pair last week, just under the wire. I also decided to try out a new primary care physician, since it'd been 14mos since my last physical, even though the plan had been to wait until April. I also managed by fate to get my annual follow up with my physiatrist moved from January to December.

Oddly both of those appointments, although not originally scheduled this way, ended up being yesterday. I really like my new primary care physician (PC), and even though I never plan on seeing her because I am the healthiest person I know, it's nice to know that I found someone I am comfortable with. Although I noticed slight judgement in her voice. If both of those appointments hadn't ended up on the same day I wouldn't have noticed the same judgement from my physiatrist, whom I have seen just over half my life.

PC doc who saw me walking down the hall, came in and almost immediately said "the baclofen & valium are for muscle spasms from cerebral palsy?" which wasn't noted on my paperwork because there wasn't a line next to "other."

"yes."

"What's the lamictal for?" I was a little surprised she didn't ask me if I had seizures, as 1 in 3 people with CP do. Maybe that was on the list and I didn't check it

"bipolar." That wasn't listed on the form either, so I had checked both depression and anxiety instead.

The next question she asked me was who my psychiatrist is, and then she asked me how I was doing in respect to that. My physiatrist asked me the same question although the conversation went like this. "J. M---. I have a new one again and I don't like her all that much either." And I got a look, which was fine then, but not the next one, when she asked me how I was doing. Actually, it was really the tone in her voice when she asked me. She has every right to give me all the looks she wants. I didn't name this blog "Uppity Crip" for nothing. She knows half the time she tells me not to do something I do it anyway. Flashback to my Aug appt: "You really should have consulted me before you did that." "I did. I didn't like your answer." :-)

Anyway, the tone in her voice was the same tone I'd gotten that morning. It was as if to say that I'm not capable of doing what I should be doing, that I don't know. It was as if to say that people with this diagnosis don't have the capacity to make responsible, smart decisions. That we're all a mess 100% of the time. PC doc doesn't have a right to make that judgement. The other one knows just how much of a mess I've been over the years, but I'd still like some credit.

I mentioned this to my shrink this afternoon in less words, and she gave me a look. It was a different look. It maybe had a hint of exasperation. So I replied with "I know what I should be doing..." Infer from that what you will, but I do try.

This isn't enough to send me looking for another PC doc, because it was a tone of concern from both of them, not a tone of fear. Not a tone of "all people with this diagnosis are violent," but to me it was still a tone of well meaning prejudice.

Well meaning prejudice, you ask? How can there be such a thing as a well meaning prejudice? Well meaning prejudices are "permissible prejudices," statements or thoughts that are so ingrained in society that they are taken for granted as truth. Mary Johnson does a fantastic job of discussing permissible prejudices as they relate to disability in her book Disability Awareness -- Do it Right! The inferiority of black people used to be a permissible prejudice. Now even racists know that society frowns upon them even if they don't give a damn about it. See this page for the definition of a permissible prejudice as it relates to homophobia. In my google search I noticed people referring to homophobia as the last permissible prejudice. What about prejudices against fat people? What about ableism, which encompasses every disability, including this one? I beg to differ with that blanket statement.

It rubbed me the wrong way, being judged by smart people who I'd hope would know better. But if they really don't know better, if they had no clue they were giving off a vibe, is it really right for me to judge them for judging me? It's what I'm trying to figure out, but I so far have no conclusion. Because if you really know me and you judge me on the basis of me being me, you might be right, even if it doesn't feel good.

Never in my Life did I Think This Would Come Out of My Mouth

"I like you a lot when you're sober."

Although I never thought I'd be working with homeless people. Life is full of surprises.

You Know You Have CP When... Or, I feel like a Masochist, but It's Like Giving Spinach to Popeye

I was getting another massage this morning, as I haven't been since the last time, and right after I got on the table I looked at her and said "I feel like such a masochist." Now who would ever say that?

For those of you who are maybe reading my blog for the first time, I have cerebral palsy, and CP is, among other things, a chronic pain condition. At 26 I know my pain triggers. I'd be worried if I didn't. And lately I've been beating up my body over and over and over again. And I'm going to keep beating up my body over and over and over again because it's more then fun.

It started last Sunday when I sat and wrote the entire November Freedom Flyer (to be posted here soon) in one sitting. I know better then that. But I took some drugs and I felt better enough. Then on Thursday I sat my butt in my chair a little after 8am and I didn't get out of it until I don't remember, but it was after 11pm. I had a meeting from 11-3 in DC for Caring Across Generations and then I hopped on the bus straight from the train, and went straight off to Occupy Baltimore. 15hrs and well, I did get up to pee twice during that time, but can you say back pain?

According to the dictionary that is built into my MacBook, besides the sexual connotation, masochism

"(in general use) [means] the enjoyment of what appears to be painful or tiresome : isn't there some masochism involved in taking on this kind of project?

Occupy Baltimore is both painful and tiresome (because paratransit keeps taking well over an hr to get me home at night and then I have to get up the next morning to go to work) and incredibly enjoyable. I've gone 3 times in 3 weeks and I was planning on going today and tomorrow and Thursday. But I didn't make it today because I chose to enjoy a nap instead.

The thing is, this past Thursday I didn't dress as warm as the week before, and it was cold, and my legs went into continual spasming (more like a shiver, CP style) and my whole body hurt, and I have this thing where when I'm sitting in my chair my feet can stay on my foot plate, but when I'm rolling at least the right one is up in the air. It has to do with my quads. In the winter it's both of them, straight out, knees locked. I almost got foot restraints for my new chair, but was talked out of it by the manufacturers rep. Well since I've been a chair user I can't ever remember staying outside for 4+ hrs in weather this cold. Apparently by the end of the night I had turned into such an ice cube that my feet might as well have been superglued to my footplate. I couldn't move a thing.

I woke up the next morning to go to work, and unfortunately a person has to move their arms in order to get out of bed. OOOWWWW! My biceps are sore! And my back is sore. And my neck is sore. And, well my legs aren't so bad, but EVERYTHING is sore!!! "Dress warmer next week," I say. Not, "What am I doing to myself? I should stop."

So yesterday I think "Why am I bothering to get a massage? She'll make it all better, but I'm going riding and then I'm coming home and showering and running 2 errands, and then I'm going back to Occupied until 10pm. And Tuesday and Thursday." There's no point. But of course there's a point.

This morning I wake up and realize I've reached the limit of how many nights in a row I can take my muscle relaxant. It causes horrible side effects and I have to take it sparingly. So almost right after, I go into her office and say "I feel like such a masochist," because I have to make the choice between continual pain or waking up a crying non-functional mess, but I can't quit Occupied. I can't quit Occupied because Occupied to Cheryl is like spinach to Popeye.

Occupied makes me feel alive. I often say that ADAPT national actions are the best anti-depressant I've ever been on. Well Occupied is like a booster shot of AWESOMENESS every single week. Occupied is a place where I can be myself, and yes there are other places I go where I can be myself, but not places that are buzzing with positive energy. Not places that are buzzing with change. Not places where everyone is filled with passion. I can't help but feed off of that, and once a week is way better then twice a year.

Since I've started going to Occupied I'm more functional, more stable, more focused then I've been in a long time. I'm more of the me I want to be and less of the me nobody likes, plus I'm now the proud owner of a pair of ear muffs. So I'm a masochist. Masochism is fun :)

URGENT ACTION Needed to Protect Medicaid Covered Services for PWDs!

Dear Advocates:

Please take a moment to read this message and act quickly to help prevent people with disabilities from potentially losing access to the long-term services and supports they need to live and work in their communities. It will only take a few minutes of your time. We must act no later than Monday, October 31 by 4:00 pm.

A proposed rule for the Affordable Care Act (the federal health insurance reform law), if enacted, could cause some people with disabilities to lose eligibility for some services that enable them to live and work in the community and not live in institutions. Examples of services that could be impacted for specific individuals, based on the new eligibility rules, include those provided through Medicaid Home and Community Based Services Waivers such as attendant services and supported employment.

The proposed rule could result in many people with disabilities being enrolled in a new Medicaid group – the Adult Group – starting in 2014, because of the new eligibility rules. The new group provides more limited coverage – called “Essential Benefits” - than Medicaid groups that now serve many people with disabilities. The rules could prevent many people from enrolling in other Medicaid groups, including the Medicaid Buy-In (the Employed Individuals with Disabilities (EID) Program in Maryland) and Medicaid Home and Community Based Services (1915c) waivers. The proposed rule needs to be changed to ensure that individuals with disabilities don’t lose services they currently receive, especially those enrolled in Medicaid waivers. For example, many unmarried individuals with taxable income under $1,252/month would be enrolled in the Adult Group and not receive some long-term services and supports.

The federal Centers for Medicare and Medicaid Services (CMS) is accepting public comment on the rule. If CMS receives enough comments suggesting a rule change, the agency MAY modify the rule. You can submit comments by using the following link: http://www.regulations.gov/#!submitComment;D=CMS-2011-0139-0002. Simply enter your name, agency (if any) and comments. Please feel free to paste the following comment, or to submit your own:

“People with disabilities who would be eligible for the Adult Group need to keep access to long-term services and supports in the community that the Adult Group is not likely to provide. Please ensure that people with disabilities can retain eligibility for services they now receive through other Medicaid groups, including Home and Community Based Services Waivers and Medicaid Buy-In Programs. A revised rule should ensure that (1) people are asked whether they have disabilities and need long-term services and supports when they apply for Medicaid and (2) people with disabilities either be exempt from the Adult Group if they need long-term services and supports they can get through other Medicaid groups, or get access to additional long-term services if they enroll in the Adult Group and have or acquire disabilities that require these services. People with disabilities who are eligible for the Adult Group, but not for other Medicaid groups, should still be able to enroll in the Adult Group.”

You Know You Have CP When...

So I was getting a massage this morning, which is a regular thing now that I've found steady (part-time) employment. Something I'm insecure about, only because I feel like most people don't understand that I've lived with a chronic pain condition my whole life, and if I mention it I feel like they'll delegate me to the category of "spoiled," which is not what this is about.

But that's neither here nor there. I'm probably in the minority of massage goers in that I can't imagine myself ever falling asleep. I find myself too interesting, I guess you could say. I like to pay attention to what hurts how much. It's useful to know. If a problem area hasn't been bothering me and it hurts less then usual, it's nice confirmation. If it hurts just as much, I wonder what's going on. I also think I'm in the minority of massage goers in that even as a kid I paid attention to orthopedists and physical therapists, and I took anatomy and physiology both senior year of high school and sophomore year of college, so I have a decent understanding of what muscles are where. I generally know what she's working on, even if I don't remember the names of 100% of the muscles.

Often, like this morning, when something is particularly painful, I'll go "What's that?" I couldn't quite tell if she was working on my lower back or the top of my pelvis, which is kind of the same thing, but it was something she hadn't worked on before. I could tell she was right at the insertion point of whatever it was.

To get to the punch line of this story, she says "your glutes and your hip rotators." And the only thing I could think of in my head was "If this hurts that much, I've gotta have a firm ass. At least I won't be like 80 years old and have a saggy butt. Score one for spasticity!"

LOL...

I Take Responsibility (a Repost)

Originally published Feb 2010, I hope the links still work. Something I found today and really needed to be reminded of.

Thanks Beth for pointing me to two GREAT articles recently, one of which I will just mention briefly. Debate Over Cognitive, Traditional Mental Health Therapy from the LA Times touches on whether or not therapists should be designing treatment plans within the context of the medical model. But it is the other article, or rather part of it, that is really the focus of this post. The Americanization of Mental Illness from the New York Times also focuses on the medical model, but more extensively.

I'm not going to sum up the entire article as it is super long (totally worth reading the whole thing though) but I am going to pull out two parts. The discussion on the stigma of viewing mental "illness" within the framework of the medical model ("brain-disease"), as "... an illness like any other" (quote from page 3), something purely with a biochemical origin, versus as something originating from situational triggers ("psycho-social") is primarily located on page four. I'm not going to comment on this section anymore except to say GO READ THIS NOW (I'll wait) because I feel like I'd be repeating myself ad nauseam -- especially lately -- as well as because the opinion is substantiated by scientific studies and isn't just my verbal diarrhea.

There is this one quote from page 3 though that really stuck with me and that I will comment on fully.

"Mental illnesses, it was suggested, should be treated like 'brain diseases' over which the patient has little choice or responsibility." emphasis mine

Little choice or responsibility. Wha? Huh? Seriously? I didn't have little choice over whether or not to be bipolar, I had NO choice. It's not like I woke up one day and said "Gee I think I want to have a major mood disorder." I didn't know until high school that my dad is bipolar and this runs rampant in that side of my family. I just drew the short genetic straw so to speak.

[image description: tiles made by elementary school students in CA (found by google images) surround and illustrate the word Responsibility]

However, I DO have full responsibility over what I do with this information.

I AM responsible for the choices I make, although I often do not practice what I preach.

I AM responsible for the decision to take my medication or not, to go to my support group / therapy / medication appointments or not, to go to the gym or not.

I am NOT responsible for the fact that I will have repeated bouts of depression for the rest of my life.

I am NOT responsible for my panic attacks, especially when I have the ones that start in my sleep.

But, I AM responsible for how I decide to handle this, how / when / if I get control over the episode or if I decide to relinquish my power to my states indefinitely.

Little responsibility? How is that little responsibility? That is BIG responsibility.

I Made a Difference (A Disability Awareness Month Post)

Yesterday afternoon I was somehow drawn to point my web browser here. I don't know why I would do something so torturous to myself but I did. If you go way down on the page it says

[the powerpoint slide, right, says "Disability & The Human Service Worker October 24th 2007"

The department collaborates with community agencies to sponsor workshops and professional and family education. Annual events include a Disability Awareness Workshop [emphasis mine] a Supervisor Training Workshop, and a workshop in partnership with The Leukemia and Lymphoma Society on relevant issues for families living with childhood cancer.

So of course I was drawn to click on the link below that, which leads to a page that has a whole blurb on the workshop:

Disability Awareness Workshop

This workshop is held each October [for national disability awareness month] and is designed to raise student awareness and understanding of individuals with disabilities. In addition, participants are informed about available resources and potential careers. In 2010, over 180 undergraduate students, faculty and community professionals attended. The 2011 Workshop will be held on Wednesday, October 26. This year's featured speaker is Alison Malmon, founder and executive director of Active Minds. This nonprofit organization develops and supports student-run chapters at colleges and universities in order to educate students and raise awareness of mental-health issues.

If you click on the tags "independent study" and "workshop planning" below, you'll note that this workshop was my baby. I initiated it a week before Thanksgiving 2006. It took until March until I found out I was approved to do it. I waited four long agonizing months, and then spent 7 more agonizing months planning it. It was arguably the most difficult thing I've ever done in my life. I spent most of those 7 months running around like a chicken with its head cut off. But it was worth it. It was phenomenal.

[The 2007 student panel. Please don't ask me why there are no men there. ARGH!]

This is something I wanted to work and be so successful that it would continue, and clearly it has. On the feedback sheets I got comments such as:

"I feel this seminar has changes my outlook on my field in family studies"

"it is critical that the public be made more aware of workshops like this one. I would suggest that professionals spread the word in some way perhaps and evening at a religious institution (church, synagogue, etc.), a fraternal organizations, etc."

"very nice idea! I really enjoyed myself! Even if you are not going to be working with people with disabilities it is beneficial to be informed about society and life"

Looking at MY WORKSHOP (for it will always be my workshop) placed so prominently on the department's website makes me feel good, of course, but it also makes me feel horrible. It makes me feel horrible because I have done nothing with my life since then. My life is one giant pit of nothingness. A person who can change the world like that, that person should...

I stopped myself from finishing that sentence. It won'tever do me any good to finish it. Instead of dwelling on what I should have accomplished since then, I thought about what I did accomplish. I singlehandedly, just by getting mad one day (that post gives a good breakdown the workshop) and deciding to fill a hole in the instruction of many students who will go on to become professionals working with disabled individuals, changed the lives of thousands of people.

2011 will be the 5th annual (!!!!!!!) Disability & The Human Service Worker workshop, and I imagine by the end of this month about 700 students and professionals will have attended the 3hr workshop at least once. If it still does what it's supposed to, if the workshop still brings a lifespan multidimensional view to disability, if it still focuses on peers in a way that a clear connection is made between disability and the audience's (majority 18-23 year olds) life; if people still learn that disability is not a tragedy, that it is many things, least of which is a diagnosis; if people still learn to look at the individual first and what that individual can offer, instead of the narrow view of disability many had before, imagine what kind of impact that can have.

[right, a crowd shot of the 2007 workshop]

Whether or not you chose to work in a clear cut disability related job, disability is everywhere. Imagine just how many clients each of those individuals will come in contact with over the 40 years they will be working, and how differently they will interact with those clients and their families. The positive impact of a three hour workshop won't last for all 700 people, I'm not delusional (It clearly didn't make much or any of an impact for some that were already professionals [and that's just one example of their horribleness, check out some more]) but even if it has made a lasting impact for just 100 people, look at what an impact I made on the world. Look at what an impact just 1 person can make on the world.

When I look back at myself at that time I do so with a large degree of detachment. I don't see me at all (although clearly I'm the one in the pony tail in that second picture), and I can't figure out what being possessed me. I don't see myself as someone who can execute small things, like hygiene and basic cleaning. Forget about changing the lives of thousands. Who me? NAH! You're delusional. Not me! But clearly I did -- it's right there on the website.

And if I did it once, I can do it again. Even if I am a few years rusty. It's not about what a person should have done, it's about what a person can do. And clearly I can do. Even though most of the time I think I can't. I need to remember what I did, and stop focusing on all I didn't.

"One person can make a difference. And everyone should try." ~JFK

Star Stickers: A Winning Strategy!

I say this now, ask me in a few months...

Last fall/winter I quit all my meds for 6mos. Don't ask me why. Since then it's been a bit of a struggle. Mid May to mid June was abysmal, but from mid June to mid July I can tell you I took one of my meds 80% of the time. Fantastic for me & even my shrink agrees, although the new psychiatrist wasn't so pleased. The other med I've never restarted. Anyway, it's becoming harder to remember how many pills I've actually taken as I've been increasingly running over them. It's a good thing I built up some reserve over the time I wasn't taking it, but the issue is I can't just look at the sleeve and count them.

Back the very end of June I bought a planner. Now sometimes I buy them and sometimes I don't, because I never use them. When you have executive functioning issues, every shrink will repeatedly tell you to use one, but as far as I was concerned, I'd just sit there and roll my eyes. Not my thing. But the thing is that from June-August my horseback riding lessons were few and far between, and my PT appt times are sporadic. Then there've been the Care Congress, more CAG commitments, a few work trainings, "medicaid cost containment" public hearings, MFP subgroup meetings, frequent conference calls, and a botox appt thrown in the mix. I have a history of knowing and remembering exactly when thing A is and knowing and remembering exactly when thing B is, but not realizing until the last second that they are at the same time, and my trainer was doing me a favor and dragging her kids along with her to the barn. The last thing I wanted to do was double book her! Hence the planner...

My shrink, who at this point has known me 4 years, was practically speechless when I showed this planner to her with things written in it. The fact that there's more and more in there, I mean, you should just see the look on her face!

Back to the meds and not knowing when I've taken them, I think you see the connection between that and a planner and the title of this post. She went out of town and my appointments were 2 weeks apart. One of the first things she asked me was "are you still taking your meds?" I looked at her and said "Eh." "How much," she asked. "I have absolutely no idea," I replied, "this time I didn't start with a full pack. But I'm sure it's less then 80%"

I have in the past had a thing for stickers. In my apt I have unopened packs of pony stickers and "Incredibles" stickers that say things like "Good Job!", "Way to go!", and "You're INCREDIBLE!" The thing is that my planner is on the smaller side, as you can see, and they're all too big. So I said to her last week, "You know those gold star stickers, the ones that come in the packs with the silver ones and whatever? As long as I'm actually using this planner, I might as well go buy those [see right]. I just can't seem to get motivated enough to actually go get them."

That's a really good idea!" she said. Now that look of shock and the sound of utter amazement that an idea such as this would ever come out of my mouth, I don't know if I've ever seen that. "Plus, you're giving yourself a gold star for taking them!" OK, *eye roll*, cheezy!

A few hours ago I finally made it to a store that carries them to buy some. FYI, neither CVS nor Safeway carry them. As I can only remember as far back as Aug 20, that's where they start. The stars were $1.68 for a pack of 715 in 5 colors and the neon dots were $1.88 for a pack of 475 in 4 colors. I couldn't decide what I wanted, so I just bought both. That's over a years worth of stickers for $3.56 +tax

Realistically I don't think they'll motivate me into better compliance then say 85%, but they'll give me a nice picture of things that is nice to have. Everyone is always so concerned about my levels. I'm using 3 colors, pink dots for my mood stabilizer, gold stars for exercising (ok, I'm not gonna lie, they do make me smile!), and green stars for my antidepressent. Note above that there are no green stars :( It's too much of a time sensitive med and I'm just not getting it. This is a very accessible strategy, as it doesn't cost much, and even blind people can feel the stickers different shapes. All I have to do is dig up a paperclip and secure them to the front of my planner.

Like I said though, ask me in a few months if I even have a clue where my sticker packs are. My strategies tend to fizzle. If I don't I'll dig them up and mail the leftovers to you for free.