(I'VE POSTED TWO PHOTOS OF HOW I USED TO LOOK! I MISS ME!)
I just finished writing to ABC's Ex-Wives Club, since Extreme Makeover
no longer seems to provide help. I can't retype it all again; I'm
still in tears from the first round. This is my story, as told to
Ex-Wives Club producers:
I had heard that
Extreme Makeover
was airing again, truthfully, but that doesn't seem to be the case,
according to the ABC web site. I hope that you will read this,
though, and consider helping me. Before hearing that
Extreme Makeover was helping people regain their lives again, I still had considered applying to
Ex-Wives Club. As I stated in my subject line, I truly am an ex-
everything.
I am an ex-wife, an ex-girlfriend, an ex-daughter, an ex-sister, an
ex-aunt, an ex-lifelong-skinny-girl, an ex-healthy-person, and I
feel
like an ex-human -- but I can't do anything about any of it. I
don't have the money, I don't have the equipment (I don't even have
teeth I can use!), and I don't have a way out of the house to try to do much at all.
I'm not clinically depressed, but I do have severe situational depression, and if I "woke up dead" tomorrow, it would
not
be a bad thing. I used to be afraid of death. I'm not
anymore. I feel like I have no future. I firmly believe
that anyone in my situation would feel exactly the same. I do see
a psychiatrist, both for lifelong panic disorder and for the
situational depression, but while I remain on anxiety medication, Dr. I
has never prescribed an antidepressant for me. I am
handling -- everything -- as well as can possibly be expected, and an
antidepressant is unlikely to be helpful. Nothing is likely to be
helpful, and nobody is likely to be helpful. I have contacted
various people, various charities, and even various churches (the
latter, for prayer and guidance only), and have been ignored. By
all parties! Yes, even by the churches. That's probably
surprising to you; I am
still surprised by that as well.
Here is my story: I was divorced from my singer/songwriter
husband in 1991. (He and I had no children.) That was also
the year that he had an album released by Sony/EPIC AND remarried as
well! I received little to nothing in the divorce. Also
that year, I admitted myself to a hospital geared toward helping
patients with agoraphobia, which I had at the time. After six
weeks inpatient, I left the hospital free of the agoraphobia and the
majority of the anxiety. I did a number of TV news interviews and
medical segments, spoke at conventions, and led self-help groups.
I was not overweight, but in late 1996 (not long after my ex-husband
died of cancer), I started a diet and exercise program, and at age 34,
went from a size 7 to a size three. Through a mutual friend, I
met a very nice guy named Bob and moved in with him in 1997, just
before my fibromyalgia and chronic myofascial pain became so severe
that I was barely functional. I was in pain, in tears and
exhausted before I even made it through each morning! Bob
convinced me to quit my job, and promised that he'd take care of
me. He has, as best he can, even though we are no longer
romantically involved. He is, basically, the only friend I have
left anymore. He is the only "family" I have left anymore.
I had to
FIGHT to get Social Security disability, but eventually, I got it. I've had to
FIGHT
for medical care (under Medicare/Medicaid), and sometimes I've received
it, and sometimes -- I've hit nothing but years of negatives and dead
ends.
Beginning in 1998, when it became obvious that my TMJD (temperomandibular disorder) was
more than
severe,
I had a second and then a third surgery in an attempt to lessen the
pain, to stop my jaws from locking, and to make eating less of an
ordeal. The surgeries were progressively invasive, and the third
surgery involved titanium implants on both sides of my jaw.
Bob was my rock, and stayed by my side throughout the surgeries.
(My "family of origin" were as unhelpful as they could get away
with. They had never believed that I was in any significant pain
from anything, and accused me of being a "malingerer," a
"hypochondriac," a "junkie," and a "drug-seeker." Their beliefs
have never changed.) In spite of those surgeries (or perhaps
partially because of them?), my lifelong chronic headaches worsened,
and my bodywide chronic pain became more than unbearable. I spent
every day in a fetal position in my bed, in agony and in tears -- even
though crying worsened my headaches. Local physicians were of no
help whatsoever, my medical files were tainted (my mother was an
emergency room RN) with notations of my being a "drug-seeker," and the
only relief I had from agonizing 24/7 bodywide pain was wine. I
would allow myself to have enough wine to kill the pain and knock me
out four nights per week. The rest of the time, I had to "deal
with it."
I was becoming more and more suicidal by
late 1998, and finally begged an "Internet friend," author Dr. Devin
Starlanyl (and fellow sufferer of fibromyalgia and chronic myofascial
pain) for a referral to a pain management specialist
ANYWHERE NEAR ME.
She referred me to Dr. B, two states away, who is also a specialist in
fibromyalgia and chronic myofascial pain and related disorders.
Bob drove me to my initial consultation with Dr. B in October of
1998. Dr. B was amazing. Not only did he
believe
me, but without my telling him, he was able to tell me where I hurt the
most! I was so relieved not to be belittled, disbelieved, and put
down that I sobbed uncontrollably. Bob drives me to see Dr. B on
a monthly basis now. He used to see me every three months, but
thanks to the DEA's "War on Pain Patients and Pain Management Doctors,"
he's had to increase our visits to once a month. My pain is
better now. (It's not gone -- not by a long shot. But it's
far more bearable.) Plus, with Dr. B's help, I quit smoking
(after 25 years) on January 26, 2002. I also eat healthier,
although it's extremely difficult, for reasons I'll get into in a
moment. My mother, the RN (and recently ordained Methodist
minister, which is too strange for words) despises Dr. B, having never
met him, because he "gives me drugs." Since the rest of my
"family" listen to her, they all believe as she does. None of
them are grateful to him, or happy for me, that I no longer want to
give up, curl up, and die from the pain alone! They also
despise Bob for taking me to Dr. B!
In early 2000, I had
a consultation with a nationally-known, prominently-featured
neurosurgeon, Dr. R (also out of state), and was diagnosed with
Arnold-Chiari malformation. After decades of debilitating
headaches, and accompanying nausea, that NO ONE believed I had, I
suddenly had a reason for
ALL of it! I had an
actual diagnosis, based on a neurological exam and MRIs! I had
more tests, which indicated more related medical problems and
diagnoses, and the recommended course of treatment was surgery.
Brain surgery. I was scared to death, but I had the
surgery. During that surgery, once the neurosurgeon placed his
scalpel to my dura, years of backed-up cerebrospinal fluid (CSF) shot
out of my head, splattered the O.R. staff, and then hit the wall!
(I'd think THAT would cause some nasty headaches.) Did I receive
an apology, from anyone, for decades of disbelief, accusations, and
name-calling? Absolutely not. And although it was made
perfectly clear that the surgery was to halt further degeneration and
would not reverse damage already done, my "family" expected me to be
completely pain-free and "all better!" When I wasn't, they (my
mother, and then on down the line) became even angrier. My
constant companion and best friend of 14 years, my basset hound
Priscilla (my now late husband, Keith, gave her to me for a wedding
present), had died after I had that surgery, which traumatized me even
further. Even though I was not ready for another basset hound,
and told everyone so, my mother persisted and drove Bob and me to a
basset hound breeder to see a new litter of puppies. I'm a dog
person, and especially a basset hound person, and when I saw those
pups, I melted. We left with one I'd fallen in love with, but I
couldn't bring her home -- and my mother knew that! I'm involved
in basset rescue, and had rescued a pup that had turned out to have
parvo, and she had died from it, despite the best in vet care and
surgeries for complications. The parvo virus remains alive and
active for two years, so until Piper (the new pup) had had her shots
and was immune, I couldn't bring her here. She stayed with my
parents, but my mother demanded that I be there (on the other side of
town) first thing every morning to take care of her, so my mother could
sleep. I was still recuperating from the brain surgery, and
should
have been in bed. Instead, I was caring for a new puppy and my
mother's two dogs. It took its toll. After about six weeks,
I lost my balance on the way to the car and tumbled down their gravel
driveway, smacking my head along the way. My Chiari symptoms
returned with a vengeance.
I returned to Dr. R, had
more tests and MRIs, and was told that I needed another surgery.
However, due to genetics and side effects from medication and grinding
and clenching my teeth (TMJD-related), my teeth had lost all of their
enamel and had started crumbling apart, and my mouth was teeming with
infection. I couldn't undergo more brain surgery until that was
remedied. Somehow. But I had no -- and I mean "ZERO" -- dental
insurance that would cover what needed to be done. I lived with
crumbling teeth and severe infection in my mouth for over a year (my
parents and sisters refused to help, and Bob couldn't afford it), and
by the time I saw someone, it was recommended that ALL of my teeth be
surgically removed. I would need dentures, which Bob and I
couldn't afford, and my "family" also refused to help me with, so it
was put off until Bob could save the money, or receive a loan, for
everything. In late 2001, my teeth were surgically removed in a
hospital, and I received "immediate dentures." I wasn't even 40
years old yet. My gums took forever to heal, trying to wear the
dentures was more than painful, and I couldn't have felt more
unattractive if I tried. The dentures never did fit correctly, I
tried every paste and reline-in-a-tube and temporary fix known to man,
and they still didn't fit. I sometimes wore them for looks only
(eating with them has never happened), but it took massive amounts of
denture gel to hold them in, and my top denture habitually pulled off
all the skin from the roof of my mouth upon removal, which caused
unbelievable bleeding! I've had the dentures permanently relined
twice now (Bob paid for both relinings), and they still have NEVER
fit. I've found a hard-to-obtain denture paste to hold them on
for looks only (still!) that doesn't cause the skin on the roof of my
mouth to be yanked off and bleed like crazy. However, I can wear
them only for short periods of time; otherwise, it aggravates my TMJD
and my headaches, and I become more miserable than usual. Which is
saying something!
In late 2002, I had the second Chiari
surgery. It was a gigantic mess. Dr. R had nicked a nerve,
which caused my chronic pain to worsen more than I had thought
possible. But the first problem was my being released without
understanding my medication dosage schedule (a P.A. had rattled it off
to me when Bob was getting the car), and without my being ready to be
released. I could tell there was something wrong. Bob and I
stayed with my best friend in Asheville (she and I have also since lost
touch), waiting for me to feel better, but it never happened. Bob
had to get back to work, and back to caring for his ailing and aging
mother, so Bob drove from Asheville to Nashville while I threw up in a
plastic hospital bag the entire trip. I tried to tell everyone
that something was wrong, but I was accused of over-worrying, and
everyone insisted that I was "mending normally." There were about
three local ER visits where I received a TON of corticosteroids, which
I don't respond well to. Then one morning I woke up and Bob
wasn't upstairs, so I tried to use the phone to call his cell. I
couldn't remember how to use it! I then tried to use my cell
phone. Same problem. I then tried to place a call using the
TV remote! Bob came upstairs, and I flipped out on him. I tried
to explain the problem, but my speech was -- impossible to
understand. I couldn't get words out of my mouth to save my
life! I was scared to death. Bob was scared to death.
So he drove me to my parents' house! (My mother IS an RN, after
all.) But she spent all of that day trying to get me admitted
into detox! No one would take me, because my problem was
MEDICAL! But she tried every connection she had to get me into
detox that day! Instead, I languished in a guest room in their
house, ignored and even yelled at, for some period of time. I
can't recall; I was not "all there." Eventually, Bob picked me up
and took me back to Dr. R. One of his P.A.s immediately took me
into an exam room and started squeezing pus out of my surgical
site. I remember THAT because it HURT! Then I was
re-admitted to the hospital there in NC. I don't remember much
after that except for hallucinating. My infection had spread from
the incision site to the brain and then became systemic. But no
one had believed me when I told them something was wrong.
Long-distance calls had been made, at my insistence, from my mother to
Dr. R, and everyone said all was "normal." I knew better, for all
the good it did me. I have no clue how long I was there, but I do know
that Dr. R lost his medical license in the month following my second
brain surgery. Legal action is still pending, in my case and
cases brought by many former Dr. R patients. My attorney alone
has about 25 of us.
Since I cannot drive (neurological
problems, pain, and medications), I depend on Bob to take me anywhere I
need to go. I live in my bed, out of necessity. I might be
able to do more, but I don't know, since I need to be supervised and
Bob doesn't have the time. In early 2003, I cut off all ties --
such as they were -- from my "family." My psychologist
more
than supports this. (I haven't even begun to get into how I was
mistreated, used, and ripped off by my supposed "family.") I am
completely alone, and have no possible means of meeting anyone new at
all. I am so far beyond lonely that a new word needs to be coined
to describe how I feel and how I am. I've tried meeting people
via the Internet, and it has never had a favorable outcome. I
"met" two guys; one used me as a bank, despite my being broke and
living on disability. The other was verbally and emotionally
abusive. The second guy, when I broke up with him, told me that I
would NEVER find anyone to love me because I am "ugly, fat, toothless,
and never leave the house." I
have gained
weight. I now have 1 1/2 "outdoors outfits" (one pair of sweat
pants, one sweatshirt, and one short-sleeved gray shirt) that fits, and
it's falling apart now. I am now in my 40s, and can't do "normal"
exercises, so I can't fit into my size 3, 5, or even 7 clothes.
(I live in pajamas, which also are falling apart.) I can't
possibly afford new clothes. Bob is always after me to get rid of
my old clothes, but I can't do it. I keep thinking I'll be able
to wear them again. (They're all "classics," as I never indulged
in "trends.") But in order to diet, I need to be able to eat
properly, which I cannot do without teeth. I can only eat soft, creamy
foods. How many of those are low-calorie and healthy? Can
you think of any? I can't either. My hair is a nasty mess,
and I can't afford to have anything done to it. I've tried
coloring and cutting it myself, but it's been a disaster. I
posted a semi-recent photo on dating sites, and have only been rejected
time after time after time. I have no one, really, so I almost
welcome junk mail and junk email. I couldn't talk with new
friends or -- heaven forbid, a "boyfriend" -- on the phone because I'm
too difficult to understand without teeth. I go days at a time
without speaking at all, because there is no reason for me
to speak.
When I was younger and healthier, I spent a lot of my time helping
abandoned animals, people with panic disorder and agoraphobia, chronic
pain, and even botched brain surgeries. I still do what I can
over the Internet. But no one -- NO ONE -- has any time or
inclination to help me. I don't understand. I don't
understand why even CHURCHES can't return an email or a phone
message! What happened to karma? (My parents have paid for
an addition to their lake house, Cadillacs, and extensive work in their
backyard, including a large jacuzzi.) I am miserable, I am
sub-human, and I need help! I have no desire to live like
this! WOULD YOU??
I want to be optimistic and believe
that I'll hear back from you, with a favorable reply, but -- please
forgive me -- it hurts to believe anymore. It hurts to trust
anymore. It hurts to live anymore.
Hi! I want to be your friend! I do care about you! God loves you! You do not need a Preacher to be able to talk to God! He loves you because you are you! God is our friend! He cares about how we feel! I am also on myspace alot if you need to reach me and I'm not here that is where I'll be! At myspace you have to know my email address: (which is) madonnabutterfly@bellsouth.net
