there is a lasiness if not predudice in the medical
community. it takes a little work to look past the CP
and check out what is really going on. i had a common
ailment that finally was corected by surgery. but, you
know it took going to three doctors before a simple
x-ray was done and the problem diagnosed. it is just
so easy to say, well you got CP. as if that meant you
could not be ill with something else or that you could
not be injured. it is as logical as saying, you can't
have been hurt by being hit by that train, you got CP.
but the docs do that all the time. and many times it
denies us justice.

--- Tamar Raine <[log in to unmask]> wrote:

> CJ... wow, that's a real shame about the door and
> your knee. I would think
> that your previous doc would confirm that you used
> to be ambulatory, and
> thus have something to compare your current
> situationn..  I hope you do sue
> the college! And of course I hope and pray all goes
> well in surgery!
>
> And, happy birthday!
>
> Hugs, mag
>
> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
> Please ask your Congressperson to vote FOR the
> MICASSA bill, this
> will allow medicaid funds to pay for community
> supports
> instead of isolating the person in a nursing home or
> institution.
> HR 910 is the bill number
> Senate version of MiCASSA (S 401).
>
> Oakland Mayor's Commission on People with
> disabilities
> ~Tamar Mag Raine~
> [log in to unmask]
> IM: tamarmag48
> Yahoo IM Tamarmag56
>
>
> > [Original Message]
> > From: <[log in to unmask]>
> > To: <[log in to unmask]>
> > Date: 4/28/2005 3:44:55 PM
> > Subject: The big update ~CJ
> >
> > Hiya,
> >       I'mmmmm baaaaaaaack. Aren't you  thrilled?
> I've had a lot of big
> stuff
> > going on lately thus the update. I know  there
> have been a lot of emails
> and
> > atempted phone calls from people wondering  if I'd
> fallen off the face of
> the
> > earth.
> >
> > Unfortunately, I've hit an unusally rough patch
> the past few  months.
> While
> > I've always been convinced that April is a black
> whole, things  have been
> > actually going down hill since Feb. Because of all
> the health issues
> I've pretty
> > much failed my school semester and will have to
> repeat it. I've also  had
> to
> > stop with the volunteering and mentoring programs
> for now.
> >
> > I continue to sturggle greatly with headaches and
> have been in and  out of
> > the ER more often. Along with constant dizzy
> spells which make it hard to
> focus
> > on anything. A few weeks ago we went to my
> allergist and found out that
> > because of my severe allergies, to everything
> green or even slightly
> spring
> > related, I am only breathing at 70% of my total
> lung compacity, which
> totally
> > explains the constant dizzy, falling down thing.
> So we had to start meds
> for  that
> > and fight to get the meds covered because medicaid
> and medicare are really
> > really bad about covering prescriptions. So,
> obviously everything is
> taking
> > more  time to get started.
> >
> > For those who don't remember, in Jan. 2004 I
> suffered a major knee
> injury on
> > my college campus. I got my left leg caught trying
> to get my  wheelchair
> > through a non automatic door and ended up tearing
> my knee. We have  been
> trying to
> > sue the college for not following ADA law in
> regards to having  enough
> > accessiblle entrances.  For that purpose we've
> been  fighting to locate a
> doctor who
> > would treat me. Most orthopedists wouldn't treat
> the knee injury because
> > they wanted to blame it on my Cereral Palsy. As a
> result I basically
> lost my
> > mobilty and have become 95% wheelchair bound. We
> also  had to drop the
> lawsuit
> > because we couldn't get a doctor to say that the
> tear in  my knee was not
> a
> > result of cerebral palsy. I literally called all
> over the  country to
> find a
> > doctor who sess Cerebral palsy patients as adults.
> There are  sooooo few
> as it is
> > still largely mislabled as a pediatric condition.
> >
> > Anyway we finally found a fantastic doctor and saw
> him a week  or so
> ago.. He
> > did confirm that my knee was torn as a result of
> the door injury.  That it
> > has nothing to do with my cerebral palsy and that
> my fuction tests are
> > decreased to the point of almost zero function on
> my left leg. This is
> great  news for
> > going forward with the lawsuit. The bad news is, I
> now need major knee
> > surgery to help keep my knee from collapsing
> whenever I stand. They will
> take my
> > outer knee muscle, stretch it so it's pulled tight
> over the bone. Then
> take
> > donor tissue, and wrap it around the muscle tight
> to re-inforce it and
> then
> > screw it to my bone with 2 metal screws. It's a
> pretty big deal. They
> doctor
> > said 3-6 months of rehab PT again everyday,
> casting, leg bracing, and
> pain
> > management. We're not sure what the end result
> will be because the tear
> has  healed
> > incorrectly. We just have to pray that I can
> regain my mobility. Our
> house
> > is not by any means accessible and if I became
> totally  wheelchair bound
> there
> > is no way my mom or anyone could take care of me
> here.  The knee surgery
> is
> > now scheduled for May 16th and will of course
> require a  hospital stay.
> Knee
> > surgery means no summer classes and no  trip for
> my oxygen therapy in May
> as we
> > had hoped.
> >
> > I also went to see a new ENT doctor because of all
> the breathing  issues
> I've
> > been having. I've basically been on antibiotics
> non stop for 2  months
> now.
> > It turns out that they need to do a sinus
> reconstruction on me. So  more
> > surgery. We scheduled that for May 2nd. I'm not to
> thrilled about the
> date  since
> > that's the day we found out about my father's
> death, but I'm  trying not
> to
> > believe in bad omens.
> >
> > I really just need to stay positive and pray a lot
> about all  of this. The
> > main scary thing is that I don't handle anesthesia
> well. Everytime  I have
> > surgery they have trouble bringing me out. When I
> was 7 I slept for 48
> hrs. At 12.
> > I didn't come out  for 16 hrs, and when I had my
> last surgery I  coded on
> the
> > table and was legally dead for 2 mins. Still I
> know these surgeries  have
> to
> > be done.. and soon with all the medicaid/Medicare
> cuts. It's jut going
> to be
> > a pretty painful spring and summer.  I know I'll
> be fine and get  through
> it,
> > it's just a little daunting at the moment.
>
=== message truncated ===


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