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Medical Forum / Diseases and Disorders / Lupus / December 2006

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Herbal Frustration

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SuperLupus@gmail.com - 01 Dec 2006 20:05 GMT
This was origionally my blog, but thought it might be an appropriate
time to post here too. Hope some of the Lupies here can relate to my
frustration and know that you aren't in this one alone.

Thanks, Tara
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
Herbal Frustration

Can't prove it, but I think it might be happening. I think as people
are released from mental institutions they are handed a laptop. They
are then directed to come up with the kookiest psuedo-cures to bother
disabled people with. Doesn't matter, herbs, lights, mushrooms, colon
cleanse, rockin' special jewelry, and my fave-- lots of prayers. Then
they should persistently post these falsities, directed at people who
suffer and dream of cures.

I'm tired and frustrated that [ignorant] people try to equate
Systemic Lupus Erythematosis with their own bout with depression.
Chronic fatigue, Fibromyalgia, depression, Irritable bowel syndrome,
Notice none of these are the same. They all have different catalysts,
different symptoms, different treatments. Never, as a layperson, should
you think that my diagnosis of Lupus would ever be comparable to your
diagnosis of depression. Quite frankly your depression is yours to deal
with. It has never attacked your kidneys or central nervous system or
pulmonary function. You don't have a medical leg to stand on with me.

Call me when your doctors have no clue how to bring your blood levels
back to high enough numbers to sustain life. Call me when your own
veins leak fluid because your kidneys are dying. Call me when your
doctors tell you that your muscles are too weak to help you breathe
properly. When your hair falls out, you drop 14 lbs in a week, your
knuckles are too swollen to hold a glass of water, mysterious fevers
hold you in your own prison, rashes eat your skin and make you burn,
you can't go out in the sun, or well lit stores- yeah call me.

Imagine this: 7 minutes in sunlight, you collapse with exhaustion. Just
then you notice the rash spreading like spider webs across your chest,
they feel warm at first but as they turn to purple they sting and crawl
with pain. You realise they are covering your once precious face,
turning you into a monster. Your eyes go dry and you joints clench down
turning you into an arthritic stone. Little bubbles cover your skin.
They look like rain drops, but it's really coming from inside. Your
body is reacting to the sunlight like its an allergen. You feel it
draining you and killing you, you're rotting inside. Sounds dramatic,
but the course of this whole progression for me is only about 15
minutes.

Now tell me, which stone should I hold to cure me. Which herb should I
boil and rub on my pain. Is there a magic potion I can drink and
somehow change my genes? I can pinpoint the genetic line that my Lupus
took to afflict me. If I eat your wonder diet will it also cleanse the
whole line of ancestors who unwittingly passed down my probability for
getting Lupus? I don't think so.
Candi Bowen - 01 Dec 2006 21:50 GMT
Hear hear! Oh, by the way, the spider webs are livido reticularis. I get
them on my chest, thighs, etc, from cold or exposure to sunlight.

Candi

PS: Coltsfoot REALLY truly works for lung problems. No, I don't sell it, you
can't even buy it in the US because the FDA banned it because it works. I
grow my own, thank you. Other than Coltsfoot, everything else is bogus & can
make you worse.

> This was origionally my blog, but thought it might be an appropriate
> time to post here too. Hope some of the Lupies here can relate to my
[quoted text clipped - 49 lines]
> whole line of ancestors who unwittingly passed down my probability for
> getting Lupus? I don't think so.
pokitoapoko - 04 Dec 2006 22:32 GMT
I was 19 when this madness started, I had kidneys (my kidneys were so
painful) and  liver complications ,I also had painful arthritis,
leaking gut, blood problems, intestinal bleeding, stomach ulcers,
Candida infection, sinus infection, stomach infection, swollen lymph
glands specially in my neck (this are so painful)  so I gave up , I
didn't want to do anything , I didnt want to take any more drugs, I
didn't want to eat, I just wanted to rest and be in peace, but bro i
had so many dreams,  I still have them and I still think I am going to
accomplish them. So after days of eating a small meal just one time a
day and drinking maybe some water I thought I was going to die, but my
frustration made me feel so mad. I was mad with my body , I was mad
with the doctors, I was mad with people that don't understand how sad
and  how painful is this, I was envious of healthy people of my age, of
my friends, of my family.  So I used all that energy to fight against
all this , I hated my body, i hated how my body made me feel so sick so
depressed and so helpless, I refused to be depressed(I assumed
depression was a symptom) and I was refusing to feel sick. This was not
easy but i was so mad even though i had such a high fever , my brain
was fuzzy and my eyes were blurry, I was refusing it , I refused to
die, I refused to give up my dreams , I refused to lose against
whatever this is :MS , fibromyalgia, wegeners, etc. My parents
contacted a guy from a Christian church (he was a priest) to talked to
me about god since I was going to die. I went to his place every other
day. I wasn't felling well but i went there. He did so much for me,
He thought me about god in a different way (these people have a unique
way of talking about god; they understand that we are in this life to
serve our creators, they have different kind of ambitions for their
lives). He had a friend that did holistic medicine to me, he was also a
chiropractor, He did all that for free, I went there every other day.
It took 2 weeks to see improvement; I felt my body was less heavy. If I
was going to die I was going to do it feeling better or at least in
peace. I didn't die though, I might not be cured but I think you are
going to have to read my bad English for at least 40 years more HEHE.

Everyday I pray god I feel better the next day, everyday I pray for
those who suffer, for those who are in hell and feel their body is
falling in pieces, for them to give them hope I am alive and I am not
going to die, everyday I will look for a ray of light till i get cured.
I am fighting and I am going to win.

I want you to know that i stopped the drugs cause I was gonna die
anyways and I felt very bad and intoxicated .My liver had serious
complications So there was no point to stick on all those drugs
cocktails and injections , I was gonna die , there was really no point
.

I am with you. I've been there, and i got worst with time. , my body
was out of control and drugs stopped working, but when everything. is
lost there is always a way, there is always a light giving hope. That
light is god, Share with him your frustrations , he will do something ,
he will get you somewhere, he will get you close to the right people ,
to the right doctors, to the right friends.  Never give up my friend,
never give up even if it is because you feel frustrated, insult your
disease, refuse it, and fight it.  No dejes que se apague la luz de tu
vida.

God blesses all of you

> Hear hear! Oh, by the way, the spider webs are livido reticularis. I get
> them on my chest, thighs, etc, from cold or exposure to sunlight.
[quoted text clipped - 59 lines]
> > whole line of ancestors who unwittingly passed down my probability for
> > getting Lupus? I don't think so.
Jason Johnson - 05 Dec 2006 02:38 GMT
I was 19 when this madness started, I had kidneys (my kidneys were so
painful) and  liver complications ,I also had painful arthritis,
leaking gut, blood problems, intestinal bleeding, stomach ulcers,
Candida infection, sinus infection, stomach infection, swollen lymph
glands specially in my neck (this are so painful)  so I gave up , I
didn't want to do anything , I didnt want to take any more drugs, I
didn't want to eat, I just wanted to rest and be in peace, but bro i
had so many dreams,  I still have them and I still think I am going to
accomplish them. So after days of eating a small meal just one time a
day and drinking maybe some water I thought I was going to die, but my
frustration made me feel so mad. I was mad with my body , I was mad
with the doctors, I was mad with people that don't understand how sad
and  how painful is this, I was envious of healthy people of my age, of
my friends, of my family.  So I used all that energy to fight against
all this , I hated my body, i hated how my body made me feel so sick so
depressed and so helpless, I refused to be depressed(I assumed
depression was a symptom) and I was refusing to feel sick. This was not
easy but i was so mad even though i had such a high fever , my brain
was fuzzy and my eyes were blurry, I was refusing it , I refused to
die, I refused to give up my dreams , I refused to lose against
whatever this is :MS , fibromyalgia, wegeners, etc. My parents
contacted a guy from a Christian church (he was a priest) to talked to
me about god since I was going to die. I went to his place every other
day. I wasn't felling well but i went there. He did so much for me,
He thought me about god in a different way (these people have a unique
way of talking about god; they understand that we are in this life to
serve our creators, they have different kind of ambitions for their
lives). He had a friend that did holistic medicine to me, he was also a
chiropractor, He did all that for free, I went there every other day.
It took 2 weeks to see improvement; I felt my body was less heavy. If I
was going to die I was going to do it feeling better or at least in
peace. I didn't die though, I might not be cured but I think you are
going to have to read my bad English for at least 40 years more HEHE.

Everyday I pray god I feel better the next day, everyday I pray for
those who suffer, for those who are in hell and feel their body is
falling in pieces, for them to give them hope I am alive and I am not
going to die, everyday I will look for a ray of light till i get cured.
I am fighting and I am going to win.

I want you to know that i stopped the drugs cause I was gonna die
anyways and I felt very bad and intoxicated .My liver had serious
complications So there was no point to stick on all those drugs
cocktails and injections , I was gonna die , there was really no point
.

I am with you. I've been there, and i got worst with time. , my body
was out of control and drugs stopped working, but when everything. is
lost there is always a way, there is always a light giving hope. That
light is god, Share with him your frustrations , he will do something ,
he will get you somewhere, he will get you close to the right people ,
to the right doctors, to the right friends.  Never give up my friend,
never give up even if it is because you feel frustrated, insult your
disease, refuse it, and fight it.  No dejes que se apague la luz de tu
vida.

God blesses all of you

> Hear hear! Oh, by the way, the spider webs are livido reticularis. I get
> them on my chest, thighs, etc, from cold or exposure to sunlight.
[quoted text clipped - 61 lines]
> > whole line of ancestors who unwittingly passed down my probability for
> > getting Lupus? I don't think so.

~~~~~~~~~~~~~~~~~~~

My prayers are with you. Get close to God and God will get close to you.

Jason

~~~~~~~~~~~~~~~~~~~~~~~~
 
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