HELL ON EARTH, THE WORST TEN DISEASES started off as a lark out of
curiosity, but has evolved into a list that may help many people and their
causes. The original question was: what do people think are the worst ten
diseases in terms of pain, suffering, and chronicity. I am trying to add
a vignette to each
disease, an e-mail contact if someone is willing to be one, an internet
newsgroup, and a foundation for help and support. The diseases are not in
order, and the list is expanding beyond ten. Send me vignettes, e-mail
contacts, newsgroups, and foundations if you have them. I will try to
always end the tragic list with some humor that has been contributed.
CLUSTER HEADACHES
"Shortly after my 29th birthday, I was at work and I began to get a pain
behind my right eye. It was as if a red-hot steel rod was being driven
through my eye from the inside. My eye became red, and tearing as though
a faucet had been turned on. My eyelid drooped, and the right side of my
nose ran to keep up with the right eye's tearing. I became hypersensitive
to light and to odors. Both just increased the level of pain in my head
off the scale. I didn't
know what was happening to me. Was I having a stroke? Did an aneurism
burst inside my brain? I have had occasional migraine headaches in the
past, horrible in their own way, but this was not the same. My migraines
were pounding headaches, pulsing with each and every heart beat.
I went to my family practice doctor. He diagnosed this as a cluster
headache
attack. He gave me a narcotic injection of Demerol and Phenergan to
counteract the pain in my head. It had very little effect. Two and one
half hours after it began, and just as suddenly, it ended. I was
exhausted and allowed a colleague to take me home and go to sleep. I went
to the local hospital and had a CAT scan. It proved to be normal. I went
to the first of several neurologists. He concurred with the family
practice doctor's diagnosis. He put me on a beta blocker to try to
prevent these headaches. That didn't work. In fact, I have been on so
many categories of medications, it's difficult to remember. Some of those
include: lithium, ergots, NSAIDS, beta blockers, calcium channel
blockers, tricyclic antidepressants, antihistamines, histamine
antagonists, serotonin reuptake inhibitors, tranquilizers, topical
anesthetics, histamine desensitization therapy, lidocaine infusion IV
therapy. Most of these treatments were tried alone and in combination. I
have been to chiropractors, biofeedback training, therapists,
acupuncturists and nutritionists. None of the above were of any use and
some of them made me ill.
There are two treatments that are useful to abort the attacks, oxygen
inhalation and a relatively new migraine medication called Imitrex. When
I
feel an attack coming on, I breathe pure oxygen by mask. About half the
time, in 5 minutes, the headache just stops. The other half of the time,
it just gets worse. Pure oxygen is a mild vasoconstrictor shrinking the
swollen {*filter*} vessels in my head. When this fails I can use Imitrex.
This
is an injectable medication, so relief involves injecting this medication
into my thigh.Imitrex has a couple of shortcomings. I can only use it
twice in 24 hours,
whereas I can have 6 cluster headaches in that period of time. I am only
permitted to use this medication 5-7 times per week, often times far fewer
than I need it. It also costs about $33 a dose. Very quickly that
becomes
extremely expensive. Since that first headache over eight years ago, I
have not gone more than three days between them. Most days I have one to
three headaches. When the oxygen fails and I have used my allotment of
Imitrex, I just go through hell, pace, curse, yell and suffer. Often
these
headaches occur after falling asleep. It takes a few minutes to wake up
enough to know what is going on. I have wondered if the roof fell down on
my head, or if I had been shot because of the pain. Everywhere I go, I
must bring oxygen and Imitrex."
see: ACHE in New Jersey and National Headache Foundation in Chicago.
DOCTOR INCOMPETENTUS
"In my opinion the worst disease, illness or condition is a bad or
unsympathetic doctor. I had a ruptured disk 10 years ago and was in and
out of hospital for six months before I was told that I needed an
operation to fix the injury. During that six months I was told, on
numerous occasions, that it was all my fault and I did not want to get
better (I must have wanted the {*filter*}ion to morphine). When
"they" decided that I needed the operation they said that the condition of
my back was so bad that if I moved in the wrong way or sneezed I might
paralize myself. They were BAD doctors. Recently I re-injured the same
area. This current injury is not quite as bad as the first injury but if
has taken only a couple of weeks to heal. I believe that this is because
my current doctor believes what I say and
has not once told me that I am not in pain and unable to feel pin {*filter*}s
etc. BTW I have kidney dammage after the first injury that is probebly a
result of being left for three days with no bladder function before the
doctors inserted a cathater. They sais that the proof that I did not want
to improve was that I was
prepared to have a cathater instead of improving. The crazy part is that
I had no feeling from my waist down so a cathater insertion was not
painfull. Had I had a choice I would have changed doctors but I lived in
a small town and there were only a few doctors and one small hospital with
one general surgon and no resident orthopedic surgons (they were 200
kilometes away).
I cannot imagine any chronic, serious, terminal etc condition that is not
made substantiallt better with the help and caring of a good doctor or
that is not made worst by a bad or uncaring one.
EPIDERMOLYSIS BULLOSA
"One of the most sad diseases that I have seen was Epidermolysis Bullosa
Dystrophica. IMO this is one of the worst subtypes of Epidermolysis
Bullosa. Thesepatients have a defect in the anchoring fibers which bind
the ba{*filter*}t
membrane of the dermis (i.e., the stuff that hold their skin one). If I
remember they lack the gene for type VII collagen. The condition is seen
in little kids. Their skin just falls off with very minor trama and they
have ulcers present throughout their life. This all results in "mitten"
deformities of the hand, as the skin of the fingers slides off and then
heals in such a way that the digits scar together. Most of these people
die of squamous cell carcinoma at a early age. All very sad stuff. I
think that their is an organization that helps people
with this disease."
MASTODYNIA OR CYCLICAL {*filter*} PAIN
I have an affliction which though not life-threatening is
certainly destructive to the quality of my life. It is called
"mastodynia" or cyclical {*filter*} pain. For at least three weeks out of
every month (now more like 27 days out of 30) both my {*filter*}s swell up and
hurt intensely. I can't move my upper body without hurting. Any pressure
even slight is painful, but if I don't wear a bra it still hurts just as
bad, perhaps worse. I have thrown all sorts of medications at it but
right now it is out of control. The only things which work are {*filter*}
which lower the amount of estrogen in my body. I would have an
ovariectomy happily if I could. The pain never stops; it feels like my
{*filter*}s are sponges filled with burning acid. I get very short-term
relief from NSAIDs like Nalfon and Naproxen. I've had this all my mature
life and it gets worse every year.
This is a really rare condition; in my case it could be
hereditary, as my mother reported episodes of it, but hardly as severe as
mine. The condition is so rare that no doctor I have seen for it has ever
seen a case, though it is documented.
Because the pain is in my tits, it isn't exactly noble suffering,
given that{*filter*}are such entertaining objects in our culture.
DEPRESSION
I was diagnosed as manic deprssive in 1978, 27 years ago. It is likely I
was manic depressive since birth, 49 years ago. I have experienced the
problems described above on a daily basis, living in either in a depressed
stated or a manic state for almost all that time. Like that of other manic
depressives, my life has been lived on a roller coaster, constantly either
rushing up or down, but never at rest.A mood disorder characterized by
large-amplitude mood swings, from severe elation to sever depression.
Suffers alternate between exorbitant highs and crash test dummy lows.
In a manic phase, some manic depressives have delusions of grandure. The
manic-depressive in his or her manic phase is the person who gave mental
illness a bad name; they are the people who think they are Napoleon, or,
in the case of one Toronto newspaper reporter, that she was the publisher
of the paper. Most manic depressives never experience true mania, thank
goodness. They explore the finges of mania in a state called hypomania. A
hypomanic is one who spends the family nest egg on a trip to Bermuda with
30 friends. A hypomanic is also someone who may be so irritable that he or
she blows away career, family, and personal contacts with a few ill-chosen
words.
In the depressive stage of the disease, the manic depressive experiences
all the symptoms of severe clinical depression: cooking.net">food loses its taste,
sex is unimportant, music and art is meaningless, nothing is enjoyable.
Whether manic or depressed, the manic depressive has trouble handling
money. In the manic stage, money is spent freely because the manic
depressive is in an expansive mood. In the depressive state, the
manic depressive doesn't care much what happens after the money is spent.
Personal relationships suffer. The manic is often over-sexed and seeks
out new partners at the expense of old relationships, those with
wives or
...
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HELL ON EARTH - THE TEN WORST DISEASES