recipe

Archive for February, 2013

Feb
04
2013

Two can keep a secret if one of them is dead.

Since my daughter Hannah’s public confession a few days ago I have
thought a lot about a couple of secrets I have been keeping mostly to
myself.  I have told family of course, and a few people but not very
many.  Her main reason for telling of her Generalized Anxiety
Disorder, Agoraphobia, Obsessive-Compulsive Disorder, and a mild
cyclical depression, was to afford people who care about her to know
and also to show solidarity with others suffering some mental illness
and maybe feel a little less isolated or ashamed. For there is nothing
to be ashamed of.  No one I know embraces her “crazy” any better than
Hannah.  But to embrace it helps her to get through those very tough
times and appreciate the very good times. We should all be so brave.
Everyone we meet is fighting some battle.

Oddly I never ever found it hard to tell people I suffered from
depression.  Partially because most of the time I was completely
functional.  But my new diagnoses haven’t been so easy to admit to.  I
don’t want to embrace them.  I want them to go away.  But they are not
going to. They are chronic.  They are debilitating. They are
incurable. And they decided to come to the party together so that made
the initial diagnosis harder and frankly harder to accept.  That and
the fact that I hate having to say “if I feel like it”.  But that is
at the end of almost every plan I have made in the past year.  But I
only realized that thinking back and trying to figure out when all
this started.  That is the first thing a doctor asks you know – “how
long have you had this pain” – and when you can’t remember…well that
is never a good sign. Or “when did your hands start swelling?” -a year
ago or more – “AND YOU ARE JUST NOW HERE?”.  Yep, I wanted to be sure
it was worth coming to the doctor with it.  It was. And it’s not like
I won’t go to the doctor and have things that are bothering me
removed.  Female Trouble??? Take that out.  Gall Bladder Pain? Take it
out, now!  But you know, in the back of my mind I knew this was more
serious.  This wasn’t something that could be removed.  I wasn’t even
sure it could be helped.  And I am still not.

I went to my family doctor first.  He took one look at my hands and
said “Well, that  doesn’t look good.”  No kidding. He then told me he
wanted me to see a specialist.  So I left with a prescription for
somepain meds to get me through what I thought might be a hard trip to
Canada to see Hannah in November because no only were my hands
wretched but I was having pains all over my body that I had absolutely
no explanation for.  Well boy was I wrong.  Hard doesn’t even begin to
describe it.  But I made it.  Even though at times I wondered if I
would.  It was all worth it, getting to see our Hannah.  But the pain
meds were like eating Skittles.  Even when I ignored all good sense
and mixed them with a little alcohol. Little to no relief. I have
never in my life looked forward to a doctor’s appt like I did the one
coming up with the rheumatologist.

After many vials of blood results were mixed.  There are some things
that bloodwork will not rule in or out. Sadly.  Then came the words I
had dreaded.  ”Susan, you have Rheumatoid Arthritis and Fibromyalgia.”
Then this is how the next 30 minutes went:

REALLLLLY??? Well Doc, that would just be swell, if Fibromyalgia was
real.  But you see, that is what YOU DOCTORS tell women my age because
you don’t want to keep looking for what is hurting us.  Or you don’t
believe we are hurting.  Or you think we are hypochondriacs.  Or
crazy.  I have seen all the commercials.  With WOMEN MY AGE,
complaining about this or that.  And yes, I have those symptoms but if
Fibromyalgia were real, then wouldn’t it affect other people besides
menopausal aged women? Huh? Wouldn’t it? Don’t have answer for that do
you???

But he did.  He did have a lot of answers.

Fibromyalgia affects people of all ages.  Both male and female.
Females are probably more often diagnosed because they are more likely
to go to the doctor.  Crazy and fibromyalgia are not mutually
exclusive but not necessarily inclusive either (he says with a bit ofa
smirk) – ahhh he DOES have a sense of humor.  Thank The Buddha!

Did I ever suffer from malaise? I don’t know. What do you mean by “malaise” doc?

A feeling of general discomfort or uneasiness, of being “out of sorts”.

How about brain fog?  Unable to think clearly, forget what you are
saying?  Just feeling…well…foggy?

OH YES. Every day. Almost. Some days I just can’t do anything.
But I really think it is laziness.  Or age.  Or occasional depression.
I mean, I don’t *think* it’s normal to take 2-3 naps a day, but I
haven’t really asked anyone else.  OH?  that’s NOT normal?  Well, I
suppose I should mention the pain I have between my left boob and my
collarbone.  Yeah, almost all the time. Yeah, it hurts all the way
through to the corresponding spot on my back under my shoulder blade.
I mean it hurts often enough, if it stops hurting I notice that.
Sometimes on both sides, same place, so I figured it wasn’t a
heartattack and I have had my mammogram so I figured it wasn’t breast
cancer.  Besides as long as it has been hurting, I think I would have
had other symptoms if it were anything serious.

Oh and sometimes I have sharp pains in that area and at the same time
my left middle finger trembles.  Weird huh?  And sometimes I have
sharp almost bring me to my knees pains in my hips, knees, elbows, and
I have this weird sharp pain that stabs me in my neck sometimes.

OKAY!! Yes, right there. AND THERE. AND THERE.  If you touch that
again, I am going to smack you!!! I have never hit a doctor but I
will!

“Now, Mrs. Dahlem, is Fibromyalgia real?”

I guess until you come up with something else it is.  Got anything for it?

“As a matter of fact, there is. Gabapentin.”

What a wonderful, wonderful medicine.  Thank you Gabapentin.  I still
have pain every day.  I still have days that are pretty rough.  But
for the most part, I don’t have the severe pain that makes me go in
the bathroom and cry. And I don’t think I am losing my mind and making
things up. And the brain fog is much better.  And as it turns out,
compared to Jerry Dahlem, I am lazy but compared to the general
public, I am most certainly not.  That will have to be good enough.
And Karma, oh Karma, I promise not to make fun of a disease ever
again.  Not even a weird one like Fibromyalgia.

Oh crap.  Rheumetoid Arthritis! I almost forgot that doc when you
started poking me and I wanted to slap you. What can you give me for
that?  Oh.  You have got to be kidding me.  CHEMOTHERAPY!?  I don’t
think so.  I like my hair.  I like my skin tone.  I like the sunshine.
I DON’T like to puke. OHHH a low dose? We’ll see.  Let me go home and
read about it and I will let you know if I decide to take it.  I
realize you are the doctor and went to school for like 50 years (even
though you are MAYBE 35) but it is my RA, so I have decide.

BTW Doc, is the RA the reason I wanted to jump out of a perfectly good
plane (without a parachute) in mid-air from pain? “No, likely that was
the Fibromyalgia.”  Great.  Just great.

In the end I decided to take the methotrexate (chemo drug) and haven’t
had any ill effects except I promptly got the flu and insist on
blaming my immune system being compromised since I have never had it
before.  So, I suppose not taking it two weeks, I am starting over and
since it takes 8-12 weeks to see any results, will just wait and see.

So there you have it.  I didn’t stop decorating cookies and cakes
because I got tired of it.  My hands got tired of it. They ultimately
decide everyday what I can and cannot do.  When you see me in town and
my hair looks like it was put on with a blowgun, I couldn’t hold the
comb long enough to get it under control and I am not ready to ask for
that kind of help. It’s bad enough I have to get Ben to go with me to
pick up heavy things and drive sometimes. If I have on sweatpants
(yeah, I have talked about people who wear sweatpants to town) and
t-shirt, I couldn’t button my jeans or raise my arms over my head to
put on a dress. If I have on gloves,they are not a fashion statement,
they are compression gloves, I paid $35 for them and even if they
don’t help much, I have to try.  Make up was never anything I cared
about, thankfully, because the Gabapentin makes my vision blurry so
there is no telling how that might turn out ;)

RA? check
Fibromyalgia? check
Crazy? ummmm not my call
Bad Attitude about all of it?  check and CHECK
Going to get thru it?  Absolutely.  What choice do I have?

AND before you think I don’t realize this, YES, it all could be so much worse.