Udate of another mother... LOL

[barb dwyer]

Hi!

I posted what's been heppening to/for me over in F&F ...

But I hung out here so much
I wanted to update y'all on the pain game as well.

Recently
I started having these ... episodes.

I'd get this horriffic pain in my neck
it'd go way up into my sinuses
roaring in my ears
then all the way down most of my shoulder and back.

The pain would get so bad - I'd throw up.

Then - after throwing up for a bit
(almost never anything other than acid)

it'd leave off.

And I'd be sore, but better.

The doctor does yet ANOTHER blood test
and I came back with this ungogly high red cell count.

Hereditary Polycythecemia (sp?)

too much blood.
too red
too thick.

Now, I'm going to school on one steep freaking campus.

'So The first week - was a mother.
no.
Not a mother.
It was a MUH-THAH !!!

I seriously wondered
if I was going to make it through the day.

End of the first week -
we discover I'm allergic to the patch.
And to synthetic nicotine.

Got the circular burn marks to prove it.

So -

I stopped ALL other medications

only tramadol.
that's it.

The treatemtn for this condition
is bloodletting.

So I go and have a pint of blood taken
once a month.
Sometimes twice or every four weeks if needed.

According to what I've read about it -
there's a good possibility
that the incredible joint pain and other bone related pain
will let up
when my blood gets down to a normal level.
But it's going to take 3-4 treatments before I see any substantial difference.

SO!

I leave an hour early for class.
I walk slowly up the million steps
that lead from one parking tier to the other.

The campus is LITERALLY carved out of the side of a mountain.

I have all but one of my classes in one building.

I spaced my classes to give me a couple of hours between in case I feel an 'episode' coming on.

I'm in terror of it happening when I'm there.
So far - it's only hit twice in the last two weeks -
and I was home both times.

I think it's from WAAAYYYY overdoing it.

And when I pace myself - it seems to be okay.

This week -
the stairs and the walk were far easier.
I don't know if I'm adjusting
or if it's just the allergic drugs wearing off.

I woke up queasy today tho
and was queasy through my entire class
(I've only got one class on Friday)
so I came home and took a nap.

nap hell - I slept five hours!

I'm forcing water
(I've a life history of hating water)
I only carry the minimum in my backpack to classes
and I force myself to go to bed early.

Set the alarm -
get up almost three hours early for first class.
give it time to hit if it's going to.
I know the moment I wake up if it's going to.

so there you have it.

I want this school thing.
I want it like nothing I've wanted in a very long time.

The pain (right now) is about the same
as ever.
We had a cold snap this week
and it got pretty hairy for a couple of days.
In fact - that was one of the 'episodes'.
Had a hell of a time taking notes.. hand was quite stiff....
But I managed.

Anyhow - I know there's folks on here who keep up with each other
and I'd be remiss if I didn't come and give my regards!!!

Thanks for everything!

[DesertEyes]

Hey there Barb ((((( hugs )))))

Wow, that pain in your neck and head and shoulder and back sounds _awful_ !!! If it makes you throw up I give it an 11 on a scale of 1 thru 10. yeah, I know that kind of pain, so have a very gentle (((( hug ))))

I'm glad the docs know what it is, and the treatment is so simple. I dunno about you but I'm way tired of meds and surgeries and tests. I'd be _so_ happy if all they had to do was suck some blood outta me.

Hey, crazy idea, is it just bloodletting they do or can you go and _donate_ your blood?

And about that steep campus with the stairs, don't they have to provide ramps and elevators for folks in wheel-chairs? Can you get a handicap letter from your doc? Over here the community college has a security department and they scoot around in these glorified golf carts, and if you have a handicap pass they'll give you a ride. Dunno if they have that over there, just an idea.

* full of ideas today, can you tell ? *

Allegic to the nicotine patch too? Dang, girl, you've had one nasty couple a weeks !!!

I'm keeping you in my prayers, that the blood letting will help with all the other pain you're dealing with. That would really be awesome. And I'm praying you hang in there and make it thru school, cuz you've _earned_ it

Mike (((( gentle hugs ))))

[barb dwyer]

Hiya {{{Mike}}}

The blood thing - yes I CAN donate it -=
with a note from the doc saying it's okay to do every thirty or less days

there's a blood processing thingy place
(I don't EVEN want to know)
thatr is DELIGHTED that I have this condition
because they take blood apart and need red cells.

I tole 'em they could have some fat t-cell too if they
waant to give me the plastic surgery to get it - LMAO

Anyhow -
I couldn't donate because of the vaccinations
I had to get (again) to meet the requirements of the school.
But this go around - I can.

Im so STOKED to see if it makes the pain go down!

[barb dwyer]

There were days though
that I wasn't sure I was going to make it
from one meeting and form filling out session
'to the other.

I thought
oh man if I have to do anything other than just sit and breathe I'm done for.

Luckily it worked out.

But it was a rough ticket for sure.

About the handicapped parking -
I don't know what accommodations can be made.

Ther'es only two spots at the building.
I'm told it's a fight every day for them.

So I don't know yet what's going to be the best thing for me there.

I made the joke though -=
hells bells - this is an ENGINEERING COLLEGE
get out there and ENGINEER something for craps sake!

lol!