LENS and Life, week of 5/31/16

No sites yet this week, but we'll probably do at least one this week.  I think we can safely say my little experiment failed.  I don't feel any better at remembering things, but I did have a couple days of very impressive mood swings.  By "impressive," I mean in private, I spent about a quarter of the day crying.  I run out of salts for tears pretty quick, so I got a nice headache to go with my tears, too.

I'm not entirely sure the underlying reasons for that.  Could be depression over the weight situation and the lack of easy answers.  Could be biological imbalances, because my diet hasn't been the best and that does tend to screw with me.  The whole "you are what you eat" holds true for me to a degree.  If I eat healthier food, I'm more emotionally stable and less anxious.  Unfortunately, you can't buy quick and easy healthy food, you have to make it.  And that's hard if you're already struggling to say, brush your teeth, or eat at all, or go outside.

I have a friend that suffers some of the same problems, and he and I once talked about this.  See, one of the new crazes in nutrition is powdered, or liquid, nutrition.  He knows he doesn't eat a lot of good food, as he has trouble eating leafy greens before they go bad in his refrigerator.  So, mostly, he doesn't.  But he knows that's shorting him valuable nutrition, so his solution for times when he's just not able to cook was to make use of things like Soylent.  This, again, is basically a meal-replacement.  He made the meal replacement powder into a cookie, and had that instead of lunch.

I was somewhat concerned, because as someone who suffers similar problems, I'd already asked my doctor about meal-replacements and she was...  vastly unsupportive, shall we say.  She does not at all recommend them.  The body isn't meant to get its nutrition that way, and people who are tube-fed in hospitals and such, they survive, but they don't look good or healthy.  It's complicated, but basically she was not even slightly in favor of meal-replacement things.

But after I told my friend about that, he responded that asking him to make healthy, balanced meals was kind of like asking someone with broken legs why they weren't walking around like everyone else.  Or, as he phrased it, "Why aren't you walking on non-broken legs?!"

I suspect I'm a little better off than that, but it definitely takes a lot of mental and emotional effort to get prepared and able to make a recipe I'm not familiar with.  Which, given my inexperience, is most of them.  I did make a chicken pot pie with whole grain crust yesterday, though, so it's clearly not impossible. 

Article: Equal Marriage for Most (But Not All)

http://www.dominickevans.com/2015/06/some-people-with-disabilities-are-prevented-from-getting-married-and-heres-why/

Seems even in this age of equal marriage, we still don't truly have equal marriage.  This is an aspect of Medicaid that didn't even occur to me, but in truth makes perfect sense.  For people like the author, who need 24 hour care to live and thrive, losing that care is impossible.  As it stands, Medicaid is the only insurance entity that allows and funds sufficient care for people like this author, or even for the subject of last week's article.

Let me repeat that: Medicaid is the only insurance, public or private, that pays for sufficient care for many disabled people.  Doesn't that strike you as problematic?  We don't need more impoverished people, but we're artificially forcing disabled people to become poor because they need Medicaid, and Medicaid requires you be poor. 

We are quite literally requiring intelligent, willing workers with handicaps to impoverish themselves and vastly limit their work options so they can survive.  No wonder the author is frustrated. 

I am fortunate.  I don't need physical assistance as much as I need mental, emotional, and dietary help.  And in the forseeable future, my spouse-to-be will be able to support us both, even if I never manage to do anything that makes a cent again.  (I fondly hope this won't be the case... I'm a modern feminist; I feel useless by comparison, and feeling useless is never good for one's health or welfare.)  I think, however, it's safe to say that at least a couple of the people I now work with on the Michigan Board of Self-Advocates fall into the same category as the author- effectively unable to get married.

Because really, how can you choose marriage over food and shelter?  I'm really beginning to sympathize with Bernie Sanders' Medicare for everyone campaign.  Even though I know it's about as likely to get through Congress as a snowflake is to survive on the surface of the sun. 

It's not right that a newlywed should be considered a financial burden on their spouse.  Not in this age of part time work, no benefits, and no pensions.  We are failing the able-bodied, undiagnosed workforce with just those things, but to then expect them to work all that time and also be the onhand care for their spouses is entirely unreasonable. 

It's precisely issues like this that I must understand, as an advocate. But I'd be a poor advocate if I kept them to myself. 

LENS and Life, week of 5/24/16

No sites again this week, but many blood tests did certainly ensue.

My uneducated eyes, given the averages and my scores, tell me I should be taking the vitamin D supplement I have every day instead of every day in winter.  So I've started doing that.  I really don't notice a difference, which annoys me.  Perhaps I need to be taking two a day?  But each one is supposed to be 500% of what you need, so that seems unlikely.  I'll be discussing my results with my primary care person in a couple days, and he'll probably tell me to take more vitamin D as well.

Beyond that I can't tell if there's anything impressively wrong with me.  Which is worrying, because if there isn't, I don't see a clear next step.  And I'm pretty sure my PCP is going to say, "well, a few imbalances here but you're basically fine, now about all the exercise I recommended?"  That's understandable, and exercise is in fact an excellent way to speed up your metabolism and feel better, but I don't have 6 days a week to devote to it right now, or anytime in the foreseeable future.  I say 6 days a week, because I have exactly one recollection of actually losing weight: in college, I was taking a weight training class and a jogging class.  I had buffet meals available to me 7 days a week.  I ate (big) salads for two meals a day, and exercised for an hour and more, 6 days a week, rotating between aerobic exercise and anerobic (weight lifting, muscle-building machines).  I was able to do my homework while exercising, which is how I didn't fail all my classes in the process of spending so much time at the gym. 

Under that immensely strict regimen for four months or so, I lost weight.  It wasn't a lot, but it was enough to go down a couple pants-sizes.  Unfortunately, I'm an adult now.  I have to cook my own meals.  There isn't a gym in a five minute walk from where I live.  I have responsibilities and a career to focus on, and little work that could be done while lifting weights or peddling a stationary bicycle.  Short of becoming super-rich, these things aren't going to change.  Thus, replicating my past success isn't possible.

Which leaves me stuck gaining more and more weight.  Did you know there's sensations involved with carrying more weight?  Because you start to get more folds around your middle, and your arms and legs smush more when you sit or lie down.  I have those, but there's also the sensation of folds in my neck.  It's not quite accurate, if I touch the skin there, but it's uncomfortable enough to disrupt my attempts to go to sleep.

I know most people want a quick and easy want to lose weight, like a simple pill once per day or something.  I would like that as well, not merely for vanity's sake but because if I gain any more weight those sensations will increase and I'll start gaining more weight around the middle.  Mostly my protective blubber (how I refer to my excess fat) gathers around my thighs, which is a healthier place to have weight.  But around the middle, it can shorten your lifespan by putting extra weight on your organs.  I was hoping the blood tests will show something obvious, but it doesn't seem like anything is terribly off-kilter... I guess we'll see.  I have an appointment this Thursday with my PCP, and another on the 1st with the LENS-doctor. 

Article: How Medicaid Forces Families to Stay Poor

http://www.vox.com/2014/12/9/7319477/medicaid-disability

This is the story of a family from California, but all Medicaid programs in all states are means-tested, which is to say, you can't have coverage if you make over a certain amount per month, or have a certain amount in assets.   This makes sense in theory, since after a certain amount of income and assets, you should have insurance through your job or at least be able to afford your own plan privately.  Unfortunately, in present times that is often not possible.  Insurance has gotten more and more expensive, and fewer and fewer jobs are required to provide it.  In addition, the requirements for Medicaid haven't scaled much with inflation over the years. 

With the mandate for health insurance, people are opting for catastrophic coverage only, or as cheap of insurance as they can get.  If you consider the point of health insurance- to make preventative care accessible and affordable and a protection against huge medical expenses like Marcella's in the story- this makes no sense.  Some people, like myself, make so little money anyway that we qualify for Medicaid without having to jump through any income-related hoops.  But if I were to get a higher paying job, or somehow make it big in the autism-speaking world, my income would be carefully scrutinized, the same as Brian's. 

The article comments: "American social assistance programs are stingy and difficult to access because of an age-old suspicion of the poor. They are designed to be less attractive than work. One problem is that they are so miserly as to be impossible to live on."  It also points out that the disabled population is folded into "the poor" population, despite having very different needs.  Thus making the disabled "the poor" as well as disabled.  In the article, Marcella needed a wheelchair-capable van to get anywhere, but with the assets and income limit, making payments on one was very difficult. 

That's immediate thinking.  The article also details, then summarizes, their future prospects: "In sum, they are barred from doing many of the things middle-class families are constantly advised to do: Save for retirement. Save for emergencies. Take advantage of tax-free college savings plans. Just $3,150 in total assets — that's it."  In addition, their child will inherit nothing when they die- the state will take everything as reimbursement for the Medicaid expenses. 

Does this system seem hilariously flawed to you yet?  

LENS and Life, week of 5/16/16

No sites this week, or for the next couple weeks.  I mentioned my deteriorating memory to my LENS-doctor, and my concerns about it being related to LENS.  Her response was this: "it shouldn't be based on my experience with other people, but we can stop for a bit and see if you notice any differences."  So we'll see.  I don't feel particularly better or worse yet, except for the next thing I'm mentioning here: blood tests.

I finally got my butt in gear and got scheduled for an appointment.  My primary care provider (not physician, because he doesn't have a doctorate) is a pretty cool guy, but he did initially balk at the laundry list of blood tests I wanted.  That's maybe not surprising, since I doubt people usually come in with entire lists of blood tests they want.  But he accepted my request after some discussion.  He even gave me a new phrase, accidentally: "loaded for bear."  In US history, on the Oregon Trail or other trails heading west, you would bring a certain amount of bullets and gunpowder to go hunting for food.  If, however, you knew you were in bear country, you would bring a lot more bullets and a lot more powder, to give your gun more "oomph."  So in the modern usage, you came prepared for trouble. 

I actually thought good and hard about that afterwards.  I kind of feel like I come "loaded for bear" to life.  He's just the first to comment on it in that way.  Life hasn't precisely been polite to me, after all.  It handed me a developmental disability from birth and then proceeded to bully me for it. Then it demanded more and more of me as the years have gone by, school got harder and harder, and then didn't prepare me for real life.  Seriously, unless you work in a school, you never get summer vacation in real life.  If that's not an argument for year-round schooling, I don't know what is.  School is supposed to teach you what you'll need for being an adult.  But it doesn't teach you how to balance a checkbook, how to register to vote, how to invest your money, how to dress and act at an interview...  But I still know how to calculate the area inside a triangle, which I've had to use so many times since passing geometry!  (hint: I haven't.  Not even ONCE.  Have a video on this topic)

Uff.  I don't think my memory has improved yet.  I'm late for my dentist appointment.  Sorry for the short entry.  Will do better next week!

The Training: a Day and a Half in Lansing

I survived Lansing and the Developmental Disabilities Self Advocate Board training.  Barely.  It was both better than I'd hoped and worse than I'd feared.  The better part was that the atmosphere was very supportive, and the schedule less a corporate training day and more a "we're here to teach you stuff, but you're allowed to get up, use the bathroom, etc. as you need."  The staff and the other members of the board (only 13 members total, so 12 other people plus staff), were very positive, helpful people.

The staff had provided catered lunch (including, at every meal, a vegetarian option for me), but also snacks ranging from fruit to chips to candy.  Very generous and thoughtful of them.  I definitely anxiety-snacked, unfortunately, but that was much more pleasant than being stuck in my chair trying to take notes for 8 hours (giving you the stink-eye here, college). 

The worse was that I'd forgotten how much people like to talk, and how often they're not very good at getting to a point.  Especially people that aren't very aware of how introverted people like me work.  I became exhausted within 3 hours, and remained that way for the rest of the 9 hours of work.  I say 9 hours because the sleep I got at the hotel was very insufficient to recovering my energy.

So the very first thing: I was, so far as I could tell, the only autistic person on the board.  There were a lot of people with cerebral palsy, some of whom were very difficult to understand.  (Mind you, they were all very nice people, but I'm not used to deciphering that style of speech.)  My roommate for the hotel room was blind, and with a service dog.  There were people in wheelchairs and electric scooters.  It was a bit dizzying.  Worse, about half of them already seemed to know each other.

The material they were trying to teach us was the basics of what a board is, what it does, some methods it can use to do its job, etc.  The staffers seemed very earnest in getting us to understand those things, which was fine.  The presentations and lectures weren't fancy, but they didn't really need to be.  What got to me was that people kept getting off track, or wanting to just talk about themselves.  And you could lose the conversation for at least 5 minutes while that happened.  We did end up setting some ground rules ("guidelines") for the board, which included words not to say.  "Retard" and "client" among them.

I'd heard and already knew not to say "retard" because obviously people with developmental disabilities are going to find it offensive if you slur them that way.  For the same reason, you don't call any African American person "nigger" unless they've said it's okay.  Or unless you're horribly racist, I guess.

But "client" was a new one.  My context for "client" was in psychology, where it was a nicer, more empowering word to use than "patient."  So needless to say, I was surprised to find it was now a dirty word.  Turns out people are very touchy about the tendency of medical professionals to believe they know better than the disabled person.  As if being a medical professional somehow let you know more about what it's like to be disabled than the actual disabled person.  Apparently sufficient numbers of disabled people have felt that exact situation occurred, linked with the word "client."  So that's why it was a banned word.  Just goes to show how language evolves.

Other highlights of the day include me nearly having a meltdown, only to be saved by my roommate and her dog.  We'd been sitting for about 6 hours (with a break for lunch), and I was just about to snap and either burst into tears or start strangling the next person to go off topic.  Then she calmly informed the room that her dog needed a bathroom break, and as soon as it was agreed to take a break, I all but bolted out of the room and to a far corner away from everyone and everyone's sight.  I spent the entire break there, listening to music on my headphones and trying to photosynthesize energy by staring outside into the sunshine and blue skies. It didn't work, but the pressure in my head did abate somewhat by the time I was forced to return.

There was also the optional evening activity, which the organizers let the board members decide on.  I, personally, couldn't imagine trying to be social after doing that entire day.  But they had handed me a ticket for a single free alcoholic drink, so I grabbed that before hiding in my hotel room. Not sure if it was the drink, the fact that I was able to chat with Chris via text unhindered, or the quiet, but I definitely felt much better being in my hotel room than out and about.  I wasn't entirely alone; my roommate and her service dog had also retreated to the relative safety of the room.  But she wasn't a bother at all, so it was much more pleasant than I'd expected. 

I slept uneasily, in a new place and a new bed with dog sounds.  It's not that the dog was loud, because she wasn't.  My hearing is just that sensitive.  Fortunately for my sanity, my roommate woke before I did so I didn't have to feel awkward about my alarm going off and waking us both for breakfast.  The breakfast at the hotel was sadly limited, but at least there was something. 

The rest of that second day kind of blurs together for me, but I definitely recall entirely running out of patience for all digressions from the matter at hand.  So I guess patience is something I'm going to have to keep working on...

The other thing that sticks out was how little I know about other developmental disabilities.  For instance, cerebral palsy can put you in a wheelchair.  I'm familiar with wheelchair ramps, because stairs are a headache for wheelchair-bound people.  But it didn't occur to me that carpet types might make a difference to how inclusive a place is.  The thicker, fluffier, and more friction-y the carpet, the more annoying it is to move a wheelchair over.  If you're getting around using your arms, and your arms get tired from having to fight friction for every inch, you're kinda out of luck.  Unless you want to ask for help, which people with disabilities can be touchy about.

Also, blindness comes in a variety of types.  You can be legally blind without being totally blind, so you can see, but everything is so blurry and horrible that you will never be allowed to drive.  You can, however, still use a smartphone.  Especially if the smartphone's text size can be increased to 18 point font.  I saw a lot of 18 point font at the training, in fact.  My roommate wasn't the only one to be more comfortable with large font, so basically every piece of paper we had was in large font.  Except for the government forms.  Which I presume are invalid unless printed just right.  Because it's the government. 

After all the things had been said and done, about half the people beat a hasty retreat.  I guess I wasn't the only one exhausted by the trip.  I stuck around long enough to say goodbye to a few people, then followed suit.  It was a long hour back, and I was useless for the rest of the day.  But thankfully then it was the weekend, and Chris was home, so we had a nice day in. 

LENS and Life, week of 5/10/16

One site last week, no sites yet this week. 

I started writing about my trip to Lansing last Thursday and Friday, but after several hours and a lot of paragraphs, I realized I was writing a Friday entry, not a LENS and Life entry.  So I'll have to find something else to write about for today. 

I'm trying to be a little more social despite my stress and worry.  That's rather difficult, but it's gotten a little easier since a friend of mine from college got back from Thailand.  She's pretty easy to get along with, and since she likes anime, Chris and I have been having her over to watch a couple shows we like.  In addition to the hang out time, it's been an excuse to have food of some kind planned. 

I'd been trying to do meal plans, but sometimes it's really hard to juggle "what haven't we eaten yet?" with leftovers.  In addition, I've really, really been dropping the ball on grocery shopping.  We'll go to cook something I'd swear we have all the ingredients for, but then we're missing at least two essential ones because I didn't actually check. 

Speaking of my deteriorating memory...  I need to get a doctor's appointment at my not-LENS, regular doctor.  My LENS-doctor has asked I get a series of blood tests, so we can try to figure out why I'm still really not losing weight, and indeed why I can't lose weight merely by counting calories and exercising.  Apparently that does, by itself, actually speak for a gland-issue.  The low-sugar diet I've been trying has only limited results, which is depressing.  So other than acquiring my mother's accidental solution, and then having to avoid many kinds of foods for years, I'm stuck being overweight.  Unless we can figure out something with my glands or other innards.  Here's hoping. 

In happier news, a couple days ago I got to go to the symphony!  A friend of mine managed to get tickets through his volunteer-work place, and like a generous person, he invited Chris and me along.  So we got to hear about two and a half hours of live music, themed around the composer John Williams.  If you're not familiar with the name, he did music for movies such as Star Wars, Harry Potter, Superman, Indiana Jones, Schindler's List, and Memoirs of a Geisha.  Needless to say, he's a pretty good composer.  The orchestra was in fine form, so it was an excellent experience. 

It was made more excellent by the appearance of the 501st Legion.  In very brief: people that dress up as Imperial Stormtroopers and other Imperial characters from Star Wars, for charity and other nonprofit causes.  These folks put absolutely backbreaking work into their costumes, and I am terribly impressed with their dedication and generosity.  So five of those hardworking souls came out for this concert, including a fully-specced Darth Vader.  Right down to the breathing noises, little flashy lights on the torso thing, and everything.  People loved it, and there were tons of pictures taken with him and the other outfits.  My Star Wars-fu is lacking, but Chris said there was a Scout Trooper and a TIE Fighter pilot in attendance.  The concert actually worked the 501st Legion members into the concert, by having the conductor "forget" his music for the Imperial March (Darth Vader's Theme).  So Darth Vader himself walked on stage, handed him the music, and force-choked him a bit for his forgetfulness.  But not fatally!  It was pretty entertaining. 

Despite my earplugs, I did manage to get a nasty headache by the end of it.  The music was pretty loud.  I could feel the pain spiking and pulsing with the high notes and flourishes in the last song. Thankfully it went away once I got out of the performance hall and outside.  I should've offered everyone earplugs.  Normally it's just me that needs them at movies or other occasions, but one of the other people we went with might've needed them too.  And this was definitely louder than usual, since Chris took a pair of earplugs as well.  Oh well.  Live and learn. 

In all, it was a pretty decent weekend. 

Article: What Not to Say a Crisis

http://www.northtexasumc.org/north-texas-conference-news/how-not-to-say-the-wrong-thing-in-death-illness-divorce-and-other-crises

This struck me as both simple and useful.  As I understand it, it's often difficult even for neurotypical people to know what to say in a crisis.  With a crisis on the horizon for my family (impending death of my dad's mother), this seems extra relevant.

As that particular situation goes, I'm on one of the more outer rings, and so my primary focus will be comfort.  I love my grandma, but in truth I don't know her very well.  This is a side effect of the distance that plagues both sides of the family.  I generally only saw my grandparents, uncles, and aunts once a year.  As a child that disliked social interaction immensely, the opportunities for bonding were even fewer.

My father, on the other hand, will lose his mother.  She was, in the past, a vivacious hostess, happy to have company and make tons of food that everyone would like.  She regularly had guests and made them feel welcome and appreciated.  Even now, after years of painful knees, dislocated shoulders, and other assorted health problems, she is a warm and caring individual.  So to him, a great loss.  Expected, perhaps, after years of aging and becoming bedbound.  But painful, as I'm sure the passing of my own mother will be to me.

The other thing I wanted to highlight is that this concentric circles model (Comfort IN, Dump OUT) makes perfect sense from a logical point of view.  The person having the crisis is most affected by it, and as such should reasonably be able to say whatever (but hopefully nothing hurtful).  The person closest to the person-in-crisis is the second-most affected by it, and as such definitely needs support from as many people as possible.  But even that need for support shouldn't allow them to undermine the support from the person-in-crisis.

As you travel further out in the rings, the crisis affects the person less and less, and it makes sense that they should be focusing on comforting those more affected, rather than complaining about this crisis that doesn't affect them very much.

I think the only issue I have with the model is that can be kind of subjective who goes in the closest rings, especially if the crisis affects a lot of people.  In the case of my grandmother's incoming death, I can ascertain that I am going to be an outer ring, and should focus on comforting pretty much anyone else who comes to the funeral.  But what if I was my dad?  Would it be okay to complain to my uncle, his brother?  Or to my cousin, his niece?  It gets tricky.  Perhaps the problem is that I'm not familiar enough with the family ties and bonds to say, and my dad will have no problems ascertaining the best course of action.

For me, though?  I suppose if I were my dad, I'd try to err on the side of comfort.  I'd probably complain to my mother, his wife, but that'd be about it.  That honestly seems like the safest course of action.  Though, it's emotions.  It's often very difficult to think through emotions logically and quietly, especially if they're strong ones.  Which is probably why the folks in the beginning of the article made the mistakes they did. 

LENS and Life, week of 5/3/16

One site last week.  I spent the majority of the appointment kvetching about things that upset and bothered me, but I did notice the LENS made me very sleepy.  As in, I couldn't stop yawning for about 15 minutes.  It was pretty silly.  In most cases, that's about the most dramatic side effects I get, thankfully.

Last weekend Chris and I drove across the state to a suburb of Detroit (2.5 hours in normal traffic) to see my grandma (Dad's mom, not Mom's mom who just had the birthday celebrations).  She's... on her way out.  We're not really sure how long, but the doctors apparently thought not too long.  So we went to visit her, lest we not see her again.  In truth, I don't have a lot of memories of her when she was much younger, but other than my uncle who lives right nearby, I'm locationally the closest of my family.  And of all of us, I'm basically the only one who can make a day trip of visiting.

It's kind of hard to see someone you love that close to death.  As people age, stuff in their bodies just kind've shuts down, a little at a time.  Though as my knees prove, you needn't be in the 40+ club.  I've had painful knees since I was a pre-teen.  I think the doctors said it was just growing pains, but it never really went away.  At least you can't hear my ankles clicking all the way up and down the stairs anymore.

In any case, my grandma was having a fairly good day when we visited.  She held a conversation pretty well, and enjoyed the flowers we'd brought her.  She likes white roses, so we figured those would be a nice addition to her room.  I'd also brought some crafting supplies; I've been procrastinating on trying to make stems for the origami flowers at my wedding.  And I figured that'd be more interesting to watch than me staring at my tablet (reading manga).  So I brought a large spool of wire, wire cutters, origami paper, and floral tape.  The first few flowers were unspeakably clumsy, but I think I have a better idea of what to do now.  Alas, I have no pictures to show, because my grandma liked the flowers so much, I left them there for her.  The roses we brought will wilt and die in a week or so, but the origami flowers will last quite awhile longer.

In a couple days, I have to travel again.  This time to Lansing, for an overnight stay.  I was recently accepted as a board member of a self advocate group, and it looks like they're going to train us and get us acquainted.  I'm understandably kind of nervous.  I have no idea how many people ended up on the board, and I'll be sharing a room (which I dislike doing).  In addition, the training will take basically an entire day and a half.  That's an awful lot of people time, which seems odd given that everyone on the board is disabled in some fashion.  It seems strange to expect us to survive an 8 hour day full of strangers, sleep in a strange place, and then do another 4 hours...  But maybe it won't be quite that harsh.

I'm worried, but there's not much I can do about it.  Maybe I'll learn some useful things there, and the training will be relatively relaxed despite the apparent schedule.