Yesterday

[Guest guest]

Sunday afternoon, we went to the opera. Loved it, but I noticed during the

second act that I was holding my left shoulder in place, and it hurt to move. At

all. Fortunately, there was a lot of applause, during which I could slowly

unfold...and there's not enough handicapped parking, so there was a long haul to

the car.

I really hate it when it hurts to lie down for the night.

I left home at 7:30 Monday morning. The clinic pharmacy pickup window opened

30 minutes late for no reason, and my prescriptions were wrong -- how does a

licensed pharmacy get refills wrong? I spent 20 minutes standing up because

they left me alone without bothering to tell me what was going on.

I decided to get the car inspected on my way home because I had to get to the

hospital pharmacy today; I thought it would be quick, as I spent $1,000+ two

weeks ago to get it in shape. It didn't pass the idle emission testing,

costing me 45 minutes in a plastic gas station chair and $40. I drove it to my

shop,

primarily on fumes of determination...a good 20 minutes of more driving. My

left shoulder by then had been out of place for about 2 hours, and my feet were

dragging when I walked...

Because I was too pain distracted to clearly tell the cab driver how to get

me home (I think cab drivers should be able to find major streets and freeways

on their own -- isn't that part of the job?), he took me first far south and

then west of my apartment for an additional $7 of fare. I came out of my

distraction though, when he braked from 70 to a stop so suddenly my head nearly

hit

the seat rest in front of me, and I realized we were about to head out of town

instead of toward it. I spent the rest of trip incredibly tense and braced

for collision. As angry as I was, I couldn't bring myself to not tip him -- he

got what I hoped he would consider insulting. Literally taken for a ride. And

I've lived here over 20 years. I hate to think of the Superbowl tourists.

I then discovered I had left my keys somewhere, I had no way in to my cats or

to my couch, and it was almost 10, time for my pain medications. Of course,

my emergency meds were...attached to the keyring. After beating myself up for a

bit (how stupid can I be?), I walked to the nearest pay phone and called one

of my two friends. He didn't have a car and couldn't help. So I called the

other friend (since I left theater, I don't have much of a social life). He

called the mechanic who found my keys. He said he would get a cab and get me in,

but it would be a while and it was " my decision " . Why is it always that?

Me: Sorry I'm stupid enough to get myself in trouble. Can you help?

Others: Sure, I'd be glad to help -- I'll drop all these things I'm doing and

come help.

Me: Sure that's not too much trouble?

Others: No, I'll do it if you want me to. It's your decision.

And most times, I can't bring myself to. I couldn't yesterday -- no matter

how tired I was, wasn't it more stupidity to have someone else take a cab when I

was going to have to anyway? So I called a cab again. It took this driver

LESS than the usual amount of time, and he made the round trip without sudden

stops or swerves.

When I finally made it home -- after more than three hours of tension and

physical demands I shouldn't have made -- I was walking about as slowly as I

ever

had. I was so tense I couldn't seem to let myself fall asleep -- course, it

could also have been the gymnasium that's being built a block away.

And this morning as soon as I dropped at the bus stop, I had to get

new prescriptions to the psychiatric pharmacy, a nice 40 minute rush hour drive

just to get there. I am so tired I didn't sleep well, my ankles refuse to

keep me upright without argument, and how did I dislocate a thumb while putting

on my support gloves so I could type long enough to write this scream...but

after over $80 in cab fares yesterday, I wasn't about to give them more.

BTW, we go to Magic Flute next Sunday, during the Superbowl here. Not being a

sports fan, I didn't put the dates together until last month. The opera's

recommendation is that we show up two hours early, because the garage will open

to the public over an hour before curtain. So I get to not be able to rest

while waiting to sit through an opera I love, but have to admit is far from

short.

And afterward, hope we can manage to find a route home. Although I've said

several times it's more than I want to endure, it's too late to find seats in

another performance because it's the most popular production this season -- and

I would be the one who would have to make the arrangements and take the

tickets to the box office...I couldn't bring myself to just ask outright,

because

I'm not working and what else do I have to do, anyway? I've accepted that I

can't really work anymore, but It still doesn't make sense to me that I can't

even

manage my home capably.

I can't seem to keep up with entropy, I don't know how to get ahead of the

chaos when I can barely manage to keep myself washed and fed, or even just sit

still. I keep making the effort, but believe me, just showing up isn't enough

after a while. My good days are the ones when I can manage to blissfully ignore

the fact I'm losing ground.

OK, that's enough. I probably shouldn't post this, except that I know that

this will at least be heard, which is more than I can say of most of my days.

Thanks for listening.

[Guest guest]

Wow, Mark. Sounds like the day from h***.

All I can tell you is that mom and I sat through a concert on Sunday night.

Everyone else stood during several songs, but we got to watch the backsides

of two rows of people in the balcony wiggling and dancing at eye level. Mom

is 4' 10 " and her knees were hurting because the seats don't let her legs

reach the floor. I tried standing during the first song, and my hip was

shifting in and out constantly, so I gave up. Fortunately, the people in

front of us were sitting more than most people in their row, so we didn't

have too much time " butt-watching " .

I also noticed my left shoulder were bothering me from trying to keep my

arms tucked in and not touch the man sitting next to me in the crowded

seating. Then there was no leg room because the rows are all too close

together so they can sell more seats. They expanded the leg room down on

the main floor, but not the " cheap seats " and the " cheap seats " were over

$84 plus TicketMaster's outrageous fees on top of that. When I pay that

kind of money, I don't want to be treated like a sardine.

I sympathize with the whole insurance hassle. Went through that BS

yesterday too. I took yesterday off from work to spend the day getting my

annual physical and then my eye exam. I started by NOT having breakfast so

I could do a fasting blood test. I drank a whole water bottle because the

nurses always have trouble drawing my blood and they insist I drink a lot of

water before blood tests. So, I finished the water just in time for the

doctor to come in for the physical. That is probably the worst possible

time for a woman to have to pee!!! After the physical, they sent me off for

blood work and a urinalysis. Next year, I shall insist they do the urine

sample and blood work FIRST and then they can do the poke and prod.

Thankfully, the water bottle did its job because I was able to fill the cup

and the nurse only had to stick me once to get the blood drawn. The last 3

times I had to do blood work, it took multiple attempts and resulted in 3-4

bruises each time.

So, after the physical, I went home to get breakfast. Sherlock did not

greet me at the door like he normally does and when I came in the house I

heard him whining. He was in the living room attempting to stand, but his

knee hurt too much and he couldn't get up. I got him some aspirin and his

glucosamine pills, but we were out of hot dogs and the cheese is much easier

for him to spit the pills out. He ended up with more cheese than I

anticipated giving him, but he did eventually eat both pills.

By the time I was done with the dog and breakfast, I had to leave for my

appointment. I'd intended to make stops along the way, but ended up leaving

later than planned. Did manage to get there early enough to hit the bank

though.

The eye appointment was good. They had a different opthamologist this time

and he was fantastic! He looked up EDS and checked for every possible EDS

complication my eyes could have. The good news is that I do not have any of

the eye problems associated with EDS, but he wants me to have my eyes

checked annually because of both EDS and a family history of eye problems

(blood clots, macular degeneration, and cataracts). Of course, my husband's

company won't pay for annual eye exams.

The eye doc did find one strange thing with my eyes. I have malinsertion

syndrome of the optic nerve. He said it's nothing to worry about, it is

just odd. Basically, the optic nerve is plugged into the back of they eye

at an angle. He said it is typical to have malinsertion syndrome in both

eyes or not at all. It is rare to have it in one eye and not the other.

When it is only in one eye, then they look for other systemic causes for the

defect. In my case, he believes that EDS is the cause of the malinsertion

and is not worried about it. Malinsertion by itself isn't a problem and

doesn't cause symptoms, but when it is only in one eye, it is usually an

indication that there is something else that went wrong at birth. So, I'm

odd - we already knew that anyway.

I had to have my eyes dilated for all that testing. That made it real " fun "

to drive home. Fortunately, it was overcast. I managed to stop at the

library with my funky plastic sunvisor inserts to pick up a couple of books

for my research paper. By the time I got done, I really didn't feel up to

driving to the pharmacy. Went home and waited for mom to drive me, but she

was taking a nap to recover from the rock concert. By the time she was

awake, I was asleep and the dog was using me as a pillow.

When we were both awake, she drove me to the pharmacy. Had to wait 30

minutes to fill the new Rx, so we did grocery shopping. My eyes were

burning and I felt awful. Mom took the groceries to the car while I got in

line at the pharmacy to pick up the new Rx. They handed me my thyroid

medicine and not the new Seasonale. I asked about the Seasonale, and they

said they had to call the doctor because he wrote the Rx wrong.

Understandable, the doc didn't even know about Seasonale until I told him I

wanted it. Should have printed the prescribing info from the website for

him. The pharmacy said it could be 2 days before they got an answer, but I

ran out of the drug the Seasonale replaced Saturday. I could fill my old

Rx, but it would mean the insurance wouldn't pay for the Seasonale for 3

weeks. I asked if they would call me, and the pharmacy assistant said they

would " try " but if I didn't answer the phone when they called, they would

not leave a message. GRR!

So, home we go. Just as we sat down to dinner, the phone rang. The other

pharmacy assistant called to say I could get my Rx. We finished dinner and

I waited for someone to drive me over to pick up the Rx. As we are getting

ready to leave, the first pharmacy tech called again to tell me to come get

my drugs. So, we went over and picked them up around 7:30 pm. And here's

the really annoying news - my insurance only pays a small amount for this

new drug and my co-pay was $105 compared to $15 for the old drug.

Fortunately, this Rx is 84 pays compared to only 21 days, so I am only

paying $45 more than I would otherwise and I only have to pick this one up

every 3 months instead of every 3 weeks.

Well, Mark, I hadn't intended this to be so long. But I hope it helps you

feel like you aren't alone.

-Barb