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.


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……


Enduring their sadness

May 19, 2012

I love that people care enough that they want me to get better.  I just wish they’d stop asking me how I’m doing.

Last fall I wrote about how difficult it is to reassure people, but yesterday brought it all crashing back harder than ever.  People ask how I am and they want so badly to hear that I’m doing better.  I’ve had to ask people to stop asking.  I know it’s hard for them, but it’s a lot harder for me.  Thankfully, they’ve all been respectful of that so far.

Unfortunately, that doesn’t work for everyone, especially my grandparents.  There are two reasons why it’s especially hard with my grandparents.  For one thing, their memories aren’t great these days, so they’ll ask me how I am, forgetting that we just had that same conversation the day before.  I’ve asked them to back off, and they did for a while, but then they forgot.  This is not their fault.  But it’s still difficult.

The other problem is that their health isn’t great.  I know that a big part of it is that they want to see me improve before they die, which could be soon.  It used to be that they wanted to see me married while they were still around.  Thankfully, they’ve adjusted their expectations of that (though I’m sure they’d still be thrilled to see me married, just like I’ll be devastated if my future spouse never meets them.)  The hard part of this is that they are being so selfless.  They want to help me and are frustrated that they can’t.  There is nothing they can do now, but they still want to know that I will be ok in the long run.  I want desperately to assure them that I’ll be fine, but I just can’t do that.  I’ve thought about faking a fiance.  I could probably manage that, actually.  But I can’t fake my health.  There is just no way I can pretend to be healthy.

So yesterday was another hard day.  Again, they asked how I was doing.  Again, they were disappointed that I’m not all better.  Again, they talked about me going back to work and again, I had to explain that I can’t do that right now.  Again, I avoided the obvious, that I may never improve.  I came home wanting to cry.  Just writing this I’m getting tears in my eyes, something that almost never happens.  It is so hard to see the people I love hurting.  I wish I could get better for them, but of course, if I knew of some miracle cure, I’d have done it already.

There’s really no choice.  I will keep plodding along with the various treatment options that I’m finding.  I will continue to research doctors and other medical practitioners, medications and diets and other treatments.  I hope that sooner or later something will work.  In the meantime, I will have to continue to tell people that I am not better.  And I will have to continue to endure their sadness.


My hero: mom

May 15, 2012

My mother has been my greatest supporter.  Mother’s Day was a few days ago, but as I wrote then, it was a bit hectic, so I’m writing about my mom now.  Of course, I really don’t need a special day to write about her; she’s amazing all year round.

My symptoms started when I was 12, so my parents were of course a huge part of things.  My mother took me to every medical
appointment, held me when I was scared, and helped me in every way she could.  When I couldn’t hold a knife, she cut my meat for me (and wow did I hate that; what teenager wants their mother cutting their meat?)  She let me yell at her when I was upset and angry.  I’ve taken a lot of emotions out on her over the years.

When all the doctors were saying they couldn’t help me, she pushed for me to see someone new.  When the doctors, and even relatives and friends, said that my symptoms were all in my head, she never believed it.  After a while, even I started to wonder if I was just making it up, but I never saw her doubt that my pain was real.  It was 11 long years before a blood test finally confirmed that the pain wasn’t a figment of my imagination, and she never showed the slightest doubt in all that time.

Even now, as my mother is getting ready to retire and move on to new adventures, she is always thinking of me.  I know that mothers always think of their children, but it’s more than that.  She checks on me, asks about my health, and still lets me lean on her when I am scared, confused, or just need someone to listen.  She advises me and supports me, even when she doesn’t agree with my approach.

My mother is smart, strong, and beautiful both inside and out.  She is the most spectacular person I know.  I am thankful for her every day.

Who supports you?  Who do you admire?  Feel free to brag about them in the comments.