My family by choice: they get it

June 10, 2012

We were all born into a family.  Everyone’s family is different.  Some people grew up with their family, some didn’t, but either way, we didn’t get to choose them.

On the other hand, there are some families you actually can choose.  These are friends who are beyond friends.  These are the friends who you may talk to every day, or maybe you don’t talk to them for a few years, but whenever you do talk, it feels like no time has passed at all.  These are the friends who you can share almost anything with.  They are there for you no matter what, and you are there for them no matter what.  They are your family by choice, a term that I actually got from one of these friends of mine.

I have talked about close friends on this blog many times before, but this weekend was extra special.

This was a really shitty week.  We had a lot of cloudy, rainy days, which wasn’t helping my seasonal affective disorder.  On the fourth cloudy day in a row, I found out that my long term disability claim was denied.  I gained 2 pounds in 2 days and felt bloated, which made me question if the gluten-free diet was no longer working.  It was Pride week, and I knew I wouldn’t have the energy to do everything I wanted to do.  I was invited to a wedding, and knew I wouldn’t have the energy to go to both the ceremony and the reception.  And to top it all off, it was my birthday, which made me think over and over about my shitty health and about what the future holds in store.  I still don’t know how I made it through all that.

As if that wasn’t enough, a friend announced that she was coming to town this weekend.  I’d known she would be coming at some point, but they hadn’t set a date until just a couple of weeks ago.  This was really lousy timing for me, but we hadn’t seen each other since last fall, and she’s one of the afore-mentioned close friends, so I wanted to be sure and see her.  It was decided that everyone would get together Saturday night at one person’s house, and I would do my best to get there after the wedding.  There’s never any need for us to do anything fancy – we just get in a room together and the entertainment takes care of itself.

The wedding was tough.  When I got the main course and had trouble lifting the knife to cut my chicken, I knew it was time to go home.  I hated to leave so early, but I just couldn’t take it anymore.  I was thoroughly exhausted.  Just making small talk with a bunch of strangers was enough to thoroughly wear me out.  I wanted to head home, but I didn’t want to miss out on seeing my friends, so I went to see my friends.  For any other people I wouldn’t have gone, but these women are different.  We’ve be friends for more than 20 years.  We’ve been through first dates, first kisses, fighting parents, fights with siblings, junior high, high school, learning to drive, having sex, college, grad school, first jobs, many jobs, deaths of loved ones, illnesses, marriages, having children, buying homes, and everything else you would expect to experience between 3rd grade and your mid-30s.  Like I said: family by choice.  My point is that these are the only friends who I let myself feel like crap in front of.  They understand and they don’t judge.  I don’t have to hide from them.

There were 6 of us there, plus two husbands who popped in occasionally but mostly stayed in the other room watching a ball game.  They’ve known us long enough to know we need our space to be utterly immature.  For some reason our maturity level drops down to adolescent level when we’re together, so maybe they were actually hiding from us.

It was the best time I’d had in ages.  I was exhausted, and I knew I’d feel crappy the next day (I was right) but it was worth every second.  It turns out, in addition to getting everyone together, it was also a birthday celebration for me!  A second friend also came from out of town!  They’d apparently been planning this for over a month.  It was perfect and simple and a wonderful treat.  I didn’t tell them that I didn’t want to focus on my birthday this year, but I guess they figured it out anyway.  We talked and laughed and had a marvelous time, and then they sang me happy birthday and brought out the decadent gluten-free chocolate cake (above) and the homemade (!) ice cream.  It was perfect.  I hadn’t laughed like that in ages.

Now remember, I was coming from the wedding, which I left because I felt lousy.  At the get together, no one commented on my looks for good or bad (other than my newly dyed hair, of course), and no one talked about my health.  One friend asked about the insurance issue, but asked it as “Can I ask about it?”  I said I didn’t want to talk about it and she dropped it, just like that.  Fantastic.  They must have known more than I said, because they fetched me water and kept offering to get me things, which they don’t usually do.  The truth was that I felt really dizzy most of the time, and was glad not to walk around much.  I mostly sat in a chair and talked, and when I needed to, I rested my head on the table.  And no one said a single word.  Perfect.

I went home that night tired, dizzy, achy, and so so happy.  I was lucky beyond lucky to find these women early in my life, and I never take them for granted.  We have always been there for each other, and I hope that we always will be.  I couldn’t have chosen a better family.


And the verdict is in: they’re calling me a liar

June 6, 2012

You’d think by now I’d be used to having people call me a liar, but somehow it’s still upsetting me.  Of course, they don’t actually use that word, but it’s the same message anyway.

Yesterday I got the official word that my claim for long term disability insurance was denied.  According to them, there’s nothing in my record to suggest that I can’t work at my old job.  Maybe they want a blood test to prove fatigue?  Great, invent one and I’ll happily take it!  Otherwise, fuck off.

When the symptoms first began I was a kid, and some people suggested that I was making it up to get attention.  Then there were others who believed that I really thought I was in pain, but that the pain wasn’t real, so they suggested I see a psychologist.  That was only barely an improvement, but at least they believed that I meant it.

Over the years I have had to plead my case to many people.  If I had something easily recognizable and definitely diagnosable, like cancer, there wouldn’t be an issue.  People would offer sympathy and would try to help.  If I’d been in a car crash, with the accompanying photos and x-rays and whatnot, they wouldn’t question it.  But I have invisible illnesses, hard to define, hard to diagnose, with symptoms that vary from person to person, and that vary for a given person from day to day.  So the easiest thing?  Say it’s not real and enjoy living in denial.  That’s great for them, but it doesn’t do me a damn bit of good.

To add insult to injury, every time I have to plead my case, I have to focus even more on the most negative thing in my life.  It isn’t enough that I have to live with this shit, think about it constantly, rearrange my life for it repeatedly, and give up my dreams for it, apparently it’s also necessary that I relive the worst of it just to convince some asshole that they really must pay me the money that they owe me.  Signing up for the insurance policy and paying the premiums guarantees a right to file a claim; it doesn’t for a second mean that the claim will be approved.  So how do I prove that I was so exhausted when I stopped working, I had to take a break and lie down to rest in the middle of getting dressed each morning?

I realized a few weeks ago that the claim would probably be denied, and mentally I was ready for it, but I guess that emotionally I hadn’t prepared.  Mentally I figured out what I would need to do to appeal the decision.  Emotionally, I didn’t realize how strongly I would react to being called a liar again.  Again.  Always, over and over, year after year, decade after decade, people would rather believe that I’m lying or confused than believe the truth: that this could just as easily happen to them, too.

Of course in this case, it’s probably just as much about the money.


Stairway success

June 4, 2012

As I carefully avoid gluten and dutifully do my physical therapy exercises, not to mention generally taking care of my body, I’m trying to be aware of the small improvements.  I’d love to wake up tomorrow and feel fantastic, but I know that won’t happen, so I want to be realistic about small wins.

Today’s small win is against my staircase.  I live on the third floor of my apartment building.  I only considered a third floor apartment because there was an elevator in the building.  Of course, when the elevator breaks down (which happens more than you’d think) then I have to take the stairs.

My knees started to bother me on stairs and hills many years ago, probably around 1999.  Earlier that year I’d climbed the stairs up La Sagrada Familia in Barcelona – I later discovered it was about 450 stairs.  By the next year, a single flight was incredibly painful.  As I’ve been strengthening my muscles, I’ve hoped to be able to climb more stairs without feeling like my knees are filled with jelly.

The goal was never to climb 450 stairs again.  I mean, I wouldn’t complain if I had that option, but again, I’m trying to be realistic.  I figured that if I could climb the stairs to my third floor without any pain, that would be amazing.  I have been working on this for a while now.  I won’t say that it’s completely painless, and I don’t even try it when I’m carrying anything heavy, but when I reach my floor, I can actually walk down the hall without limping, and within a few minutes the aches are gone!  Even better, I can get to the third floor without that jelly feeling!  And for the first time in the 6 years that I’ve lived here, I can now climb all the way from the 1st floor to the 3rd without having to stop and rest on the way up!!

I’m not running up 5 flights of stairs, I’m not looking for stairs instead of elevators everyplace I go, and I’m not choosing the stairs when I’m carrying extra weight, but for me, this is a WIN!


6 consecutive days of physical therapy!

June 3, 2012

I’ll admit there were times I just “didn’t feel like” doing my exercises.  And yes, there were days when I legitimately felt like shit.  And sure, there were days when I felt lousy and probably could have pushed myself to do PT, but moving really was tough.  Of course, there were also the days that I “meant” to do it, but somehow never got around to it.

And then there’s today.

When I started going to physical therapy a few months ago, I decided to make more of an effort this time around.  I printed out a calendar from the web, and I bought stickers.  Just like when I was a kid, I got a sticker every time I did something.  In this case the reward isn’t some toy, it’s my health.  It’s easy to forget that, of course, because the reward isn’t immediate, but the truth is, I’m starting to feel the PT working.

I’ve been pretty good about doing the exercises at home on the days I feel well.  Sure, I’ve skipped a day here or there, but doesn’t everyone?  But yesterday I looked at the calendar week by week, and noticed that I mostly do the exercises 2 or 3 times a week, sometimes 4, and that just isn’t good enough!  I also noticed that I was already doing really well, so that pushed me to keep going.

And then there was today.

Today is the kind of day when I would normally have skipped PT.  I left the house a bit earlier than usual.  I had a busy afternoon.  I was busy and productive at home.  I forgot about the exercises.  Then I was having dinner and I had to digest.  But I pushed through, and at 9pm, I did it!  I broke my own record and did PT exercises for the 6th day in a row!

Now the pressure’s on.

I’m writing this in a public place so that maybe I’ll feel even more motivation to keep going.  I’ll give myself days off when I legitimately don’t feel up to PT, but otherwise, I’m pushing through.  Wouldn’t it be amazing if I could do PT tomorrow and complete and entire week?!

So not only is my posture getting better and my muscles getting stronger, but I’m feeling damn proud of myself, too.  Woo hoo!


The best suggestion I ever got

June 2, 2012

“Have you tried magnetic therapy?”  “My friend had luck with acupuncture.”  “I perform reiki and it could help you.”  “My sister’s boyfriend’s cousin’s roommate’s father’s boss has the best doctor.”

Ok, the last one I made up, but let’s face it, we’ve all heard something like that, right?  Friends, family, acquaintances, coworkers, and absolute strangers have all felt the need to give me advice on how to “fix” my health problems.  Everyone has an idea and they feel the strong need to share it.  I guess it hasn’t occurred to them that after 20 years, I’ve heard it all.  It also doesn’t occur to them that what they’re suggesting might be completely ridiculous.

Tonight I was at a gathering with people I didn’t know.  We had just met for the first time, but in talking about jobs, I mentioned that I wasn’t working due to health stuff.  Later, when I was speaking one-on-one with someone, I referred again to my health problems.  He asked if I’d heard of PatientsLikeMe.  This was awesome!  Let me explain….

First, PatientsLikeMe is actually useful.  If I hadn’t heard of it I might have blown off the suggestion only because I get so many.  But I knew of this site already so I knew how great they are.  Second, he made it clear that he personally knew about this site, and he wasn’t suggesting it just because he “heard” it was good.  Third, he was suggesting a way to find community.  He was not suggesting a treatment.  And finally, he was clearly trying to offer something that he honestly felt was useful because he cared.  I think that many people do want to help, but many more want to feel useful and knowledgeable and giving advice accomplishes this.  This guy wasn’t looking to feel good about himself by helping; he just wanted to help.

So for all of these reasons, this guy rocks.  I told him how awesome that was, and explained the kind of “advice” I usually get and he was appalled.  I just hope he can teach others how to be more helpful by not trying so hard to help.

Now I just need to come up with a good way to repel intrusive strangers……


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