Hidradenitis suppurativa or HS

[Omutb]

The bonus I found out is I will qualify for Medicare too!

A definate bonus indeed.

The US health care system has to be the worlds biggest joke at times, on one hand saying you have "the best health care" whilst forgetting to mention "as long as you can pay for it".

[Xaun]

For what are we without them?

Sad pandas with no pie!! ;<

*hugs* Here's hoping the best possible situation can turn out for you Xaun

*crosses fingerses an toeses*

A definate bonus indeed.

The US health care system has to be the worlds biggest joke at times, on one hand saying you have "the best health care" whilst forgetting to mention "as long as you can pay for it".

Thankfully it seems that while doctors as a whole are relatively in the dark about this disease it has been made an issue to the Government which in turns means I don't have to reinvent the wheel to get accepted. This still doesn't mean it's easy to get in or timely.. but I can at least apply in about a month when the first round of paper work arrives. Till then /me goes in to dollar uber stretch mode...

Once I get accepted to Disability then its right to Medicare/Medicade and see what can be covered. My ex has lived with lupus for over a decade as well. She was a sweet heart and took years to get a good doc that could help her. It took her over a year to get accepted in to Disability, but the nature of Lupus compared to HS tho is that mine I guess is easier to category regardless of how rare or debilitating. Ironic part is I know what the support role is for someone with a lifelong disease.. I was with her for 6+ years. I guess I paid my luck forward... I hope

[Exachix]

=(. Xaun, I wish you luck and hope that you become well again.

[Jenshiye]

Suffering is similar to death in a way. We appreciate it more what it passes and are thankful we do not have the same affliction, appreciating good health, not just the absence of disease.

My thoughts are with you.

[enigmatia]

*hugs and good thoughts* You know you have my support Xaun.. All I can say here is that there are many who care, who will be there and to utilize that.. support from friends sometimes can be the deciding factor in whether it is worth getting out of bed on a 'bad day' or saying screw it and trying to sleep through the pain. Keep your chin up

[Xaun]

*hugs and good thoughts* You know you have my support Xaun.. All I can say here is that there are many who care, who will be there and to utilize that.. support from friends sometimes can be the deciding factor in whether it is worth getting out of bed on a 'bad day' or saying screw it and trying to sleep through the pain. Keep your chin up

Thanks hun and you too! *hugs* And that is too too true..

[Jenshiye]

Good that you have them as Enig said, they can be a deciding factor. Try and keep it internally motivated though.

A list of the things you like and want to do might help ... other than that I am not sure.

How have you been feeling lately? Is it a relief now that you fully understand what you are dealing with and have ways of handling it?

[dantesho]

Dear Xaun,

I am very sorry to hear of your disease. And oh my god, that video shocked me.

Best regards,
Duck.

[Xaun]

Dear Xaun,

I am very sorry to hear of your disease. And oh my god, that video shocked me.

Best regards,
Duck.

Thanks.. it has been one of the roughest weeks I can remember.. it just keeps getting worse

[Windguaerd]

God, I've just learn of this by browsing these forums after month of being inactive (I was homeless for 6 months).

Now I'm slowly getting back into the game, and I learn that one of the people I respected in the game is ill.

Very sad night for me. Xaun, I loved your art and I think before I left I even asked for you to make a portrait of Windguaerd & Windkeeper.

Hang in there bud, you're strong and you ain't alone.

[motaso]

hope God give u the strength to pass this just keep the smile and the positive attitude they are ur weapons against it .

[Xaun]

Thanks for the positive vibes.. was nice finding this after getting on my feet again.. And welcome back Windkeep!

[BIGMANFORCE]

Hug your jesus nano, you'll be fine.

bump that

[Xaun]

This morning I awoke with a new area being affected.. I cannot believe this.. I didn't notice it at first.. mild itch.. then the lump started forming.. I've been a regular pot smoker as a result of the pain I live with on a regular basis as it seems everything doctors prescribe make me feel even worse to feel anything better.. I've not had pot for several days just due to circumstances and then this happens.. makes me even more convinced that it has been helping if nothing more than just to slow it's advance along with the reduction of inflammation and minor pain relief.. I keep trying to find more studies on any type of drug or treatment that can help this. I really don't know much to say on it other than to quote a few testimonials of those whom also have this...

Cannabis and Hidradenitis Suppurativa

* From: "I.N. Galidakis" <morpheus@xxxxxxxxxxxx>
* Date: Mon, 24 Mar 2008 12:13:14 +0200

This is not a scientific study perse, rather more like a personal observation,
after decades of suffering and pain, from age 25 till 42.

I suffer from a very painful disease, called hidradenitis suppurativa.

Very little is known about the causes of this disease and at present it is
incurable. This is the kind of disease you don't want to wish on your worst
enemy:

http://www.google.com/search?hl=en&q...is+suppurativa

I have gone to all sorts of doctors, and only one surgeon who performed my gall
bladder surgery knew about a very strong antibiotic (Dalacin) which causes a
slight improvement in some cases (not all).

The problem with Dalacin is that it works only for 6-8 months causing the
disease to subside for the aforementioned period, but after that the disease
reappears and the patient needs stronger doses of Dalacin, because the immune
system adapts to the antibiotic.

I tried it and had some promising results, but the doses required after three
applications (total 24 months) were huge.

After the third application of Dalacin, I restarted smoking some moderate
amounts of Cannabis, around 3-4 times a week.

The results have been tremendous: The disease has subsided the last year (one
year after the last application of Dalacin) and for the first time in my last 20
years I have been free of pain.

This is either a direct miracle from God or a Cannabis cure. I am not one of
God's favorites, so I tend to believe the second.

If anyone out there suffers from this bitch of a disease, consider asking your
doctor for a Cannabis prescription. You'd be amazed at the results.
--
I.N. Galidakis

is there time? how much time is this going to take???
i'm sick, i have a disease that's rare, an orphan disease, a killer,
crippler disease that has for ten years and some put me in a world of
pain! it's not going away! it's getting worse! and no one is
researching my disease! no one can tell me how to treat it, there's no
cure in sight... no one famous or important is calling for research,
nothing! nobody even knows the name of my disease! i can't even
remember it, it's so obscure. in my own extensive research into
the championing of lost causes, i have personally hit on a regimen
that at least eases my pain, that actually gives me my
mind back, and my ability to focus, and to employ perspective, and
humor, and even some hope, and some wisdom, i daresay, to my
predicament. part one of the regimen involves prayer, or meditation,
you know, mindfulness, awareness, presence in the moment, just being,
acceptance, nonattachment, breathing in and out slowly, peace...


part two is medication... ooh... you would not believe the gobs and
globs of ooky ooky pills and meds that have been thrown at me by real,
medical doctors for this... everything that's the latest, the newest,
the most modern approach to the management of- nope- not the disease,
i've told you already, there's nothing for it... but the good doctors
are compassionate... they want to manage my pain, at least they tell
me these nice little pills are going to alleviate at least some of my
pesky symptoms so i won't hardlyeven notice my disease... i won't
freak out because there are anti- anxiety pills i can take...oops but
watch out, not too many they can be habit forming you know... and pain
pills... don't take too many, you'll get ulcers, but then again, don't
wait til the pain gets outrageous cause then the pain meds don't work
all that well...
anti depressants... well, taking them may be associated with thoughts
of suicide and liver damage, but what the heck... who wants to be
depressed? five years after i started taking antidepressants several
thousand of my fellow serazone users got involved in a class action
suit and no doubt they are extremely depressed about the irrevocable
damage to their vital organs... so.... no no no no i don't take pills
no mo....


raise your hand if you can guess the name of my medicine of choice?
the gentlest, oldest natural remedy of choice for what ails me? say it
with me...
MARRY! WANNA?


can we? how long? i'm sick... and i'm tired of waiting for me ganja.
i'm tired of being marginalised and laughed at and made into a cheech
and chong because i take a stand for the end of a law that oppresses
me and millions of other people.


How many of you believe there's valid medical uses for marijuana...
have you talked to anyone with ms lately, or who's dying of cancer or
AIDS? Or who lives with chronic pain 24 /7?
And how many of you are convinced that there's another piece of this
puzzle... you know the little problem we've just started to notice
we're having with pollution and global warming, the need we have for
fast, easy to grow biofuels that could save all the struggling family
farms, and maybe the planet, before its too late???
ARE YOU LISTENING?


DO YOU FEEL ME< OFFICER SHERPA? DO YOU HEAR ME< LEGISLATORS?
ARe you awake and aware fellow citizens?


LEGALISE IT! DECRIM IN 2008! GET THE U*MASS MEDICAL RESEARCH UP AND
RUNNING! FREE THE MARIJUANA PRISONERS! FREE THE MARIJUANA!


I don't know if this will help with your speech much, but here's a bit
of my own history with pot. At 7 years of age I developed asthma and
lived with it through out my childhood. At 15 my older brothers
turned me on and on one occasion while at my oldest brothers place I
became stoved-up. With an asthma attack coming on and I had forgotten
to bring my medication, my brother hands me a joint and tells me to
smoke the whole thing by myself, which I cheerfully abliged. Some
time later on after I had finished the joint, my brother asks how I'm
doing, with regard to the attack. And I had forgotten all about it
till he mentioned it. The asthma attack had past. I'm not suggesting
anyone with asthma should do the same, I'm just telling my experience.
Anyhow I had a real tough time through my teens knowing that pot
relieves my asthma, but its illegal. What did become evident is that
it would also cause an attack if I over did it. So marijuana became a
true medicine for me. It never failed to relieve an attack if it
wasn't the cause. I've not had an attack for over 10 years now so
maybe I've out-grown it, but my doctor says I'm still clinically
asthmatic. If I should ever experience an asthma attack again you can
rest assured I will get me some pot and take care of business myself.
The medication I was prescribed didn't always work, so what's the
point. I can honestly say "marijuana never failed me".

Chuck

PS Looking back I believe I was blessed, with the knowlegde of truth.- Hide quoted text -

- Show quoted text -


It's not for everyone, but the hard fact that marijuana does do a lot
of folks good is suppressed, by the drug companys because it will
effect their profits, and by alchohol barons for the same reason.
I'd focus at least part of the speech on other uses for hemp,
clothing, paper (naturally acid free), fodder for livestock,
protection against erosion, and scientists in Japan have come up with
a way to make 2X4s out of it, to name a few.
"News is something which sombody wants suppressed all the rest is
advertizing." - William Randolph Herst [ironically, since it was his
propaganda that helped make hemp illegal in this country in the first
place]
NEWS ITEM: an archiological dig at Mt.Vernon has uncovered
Washington's whiskey still. The factory put out about 11,000 gallons
of whiskey a year.

I hated history in school.

Sanity R.E.

1 litre of tears

* From: angself <angself@xxxxxxxxx>
* Date: Mon, 3 Dec 2007 09:18:31 -0800 (PST)

I am a huge anime and live japanese drama tv fan. My hubby and I
download fansubs that come out, before they get licensed, with
torrents and such. Hey I'm 27 still young!! he's 26 lol he's just a
kid still..

anyway There was one called 1 litre of tears look this up on
wikipedia... to anyone suffering from any illness the story can be so
uplifting, encouraging... and teach us all some important lessons...

I'm still young and since a lot of you are old bags... just kidding...
you probably already know these things...

Even though I have an incurable disease that could at anytime attack
any part of my body and be deadly... so far I have not encountered any
real life threatening things yet... at least if so they are unknown to
me yet...

I watched this series thinking it was just a regular drama about a
girl with an incurable disease as a lot of the japanese live tv has in
it... this one was based on a true story about a girl who gets
spinalcerebral something or another... basically a disease that
affects the autonomous and your cerebellum or cerebral... where the
nerves basically stop working in a manner that they dissolve etc... it
starts with problems like dropping things poor depth perception
difficulty writing loss of body control and slowed speech to loss of
speech poor swallowing etc... they basically loose abilities one at a
time until they become bedridden and eventually die... the disease is
supposed to be a slow progressing one but it wasn't for her. When she
turns 15 she is an active basketball player but starts having the
symptoms and within 1 year has need of use of a wheelchair. But when
they find out about it the doctor asks her to keep a diary of
symptoms... but her diaries become more of a story about what happens
to her throughout it all... and at a point where she is unable to do
most anything she can still write. Her diaries were published... ah I
forgot the really depressing thing about this disease is that while
the body no longer works the brain is fully functional in the mental
process etc... so the person can read and be a genius but egads...
which is why she writes as much as she can until she can no longer do
it...

But what I learned from watching this is an important lesson that I've
needed to learn...

pain does not mean impending death, instead it means I'm still alive..

if walking is painful... am I still walking?
if breathing hurts ... have I stopped breathing...
if my ribs ache does this not mean that they are still existent?

All this time I've seen my pain and disease as impending death as my
mother died when I was 15... so I keep thinking it will happen to me
to she was 36. my older brother died at 36 my aunt died at 42 my
grandfather died at 44 my great grandfather died before 50... my best
friend died at 12. All of these cancer lukemia heart disease stroke
all of these sudden and past the point of recovery...

I'm tired of seeing doctors who don't want to take my folder home and
do research...

I've been dropping things lately... loosing my balance... having
memory lapses... my vision is now as bad as it was wearing the glasses
that gave me perfect site last year... when I move my eyes it gives mt
a numbing vibrating tingling sensation in my arms neck face tongue and
heart... now when I breath deep instead of costochondritis pain it is
a dry pain... is the chronic bronchitis turnign asthmatic again...

but don't all these things mean that I'm still alive?

I don't want to die... i don't fear the relief of death or the pain
before it or going to heaven... but I of course don't want to loose my
prescious children not yet... so I'm still alive... I'm not going to
look at all these things as though they are clues to my impending
death... but clues to the fact that i'm still here... when I can't
feel the pain anymore then I know I will have lost..

isn't that correct?

So far this really hasn't been a battle with the doctors like I
thought... but a battle of my own resolve...

but for now I am going to war

Many people die in wars... some come out with missing limbs... or
terrible memories... but some come out with courage and they made
it... even the ones who have injuries they made it right....

as long as I have breath that is painful or not I will not waste a
single bit of pain anymore.

I just won the first battle with myself
and the second with my mental illnesses
now my body is declaring a new battle... but isn't it also declaring
that I'm still here?

What is my next step... who can answer that... what doctor to see...
one who will listen and connect the dots... someone who will realize
I'm intelligent and I don't mind doing my own research if necessary
and not condemn me for that... I've had to many near misses due to
misdiagnoses and ignorance... does this word come from the word
ignore? I think surely it does.

I have 3 years of college ... but divide that with prepharm, art,
english, music, and general studies... lol still going back I think
these things and classes were just preparation... I am strong when it
come to words... maybe I can change things... maybe not... They say
you can only control what you do not others... but surely my changes
will change others eh?

[Xaun]

A few of the "options" if you call them that to guinea pig myself with to try to deal with it.. but somedays I feel like I am on a moebius loop... Not sure about this Gluten thing and ozone treatments sound about as bad or dangerous as anything else people have mentioned and the one thing that I know actually helps to relieve my pain is illegal.. but anything that might help I am not taking for granted.. just wish I didn't feel like everything mentioned is just another snake oil remedy..

> Here is some information regarding Ozone Therapy. As you will see
as your read this, there are states where doctors can give Ozone
treatments. If you do a internet search for Ozone therapy, you will
find a lot of information to read regarding the pros and cons of the
treatment.
> "Some people, including a number of doctorsand biochemists, believe
ozonehas remarkable healing properties. Others have argued that it is
nonscientific and has no proven benefits. For many years ozone's
medical value or non-value has been the subject of controversial and
emotional debate.
> Therapeutic use of ozone is not endorsed by health authorities or
medical associations in any English speaking country, and most US
states prohibit the marketing of ozone generators, its medical use,
and even research and clinical trials of ozone therapy, so that
doctors risk losing their medical licenses by administering or
prescribing ozone therapies. There is anecdotal evidenceof ozone
therapy having caused remission in a variety of diseases,but only a
few of these life saving administrations have been verified.
> In the USA, recently passed Alternative Therapy Legislation has
made ozone therapy an option for patients in some states. In Alaska,
Arizona, Colorado, Georgia, Minnesota, New York, North Carolina,
Ohio, Oklahoma, Oregon, South Carolina, and Washington Physicians can
legally use ozone treatments in their practice without fear of
prosecution.
> Contra Applications of ozone, the European Cooperation of Medical
Ozone Societies, warns that direct intravenous injections of
ozone/oxygen gas should not be practiced due to the possible risk of
air embolism; at least one death in the USA has been attributed to
such an embolism occurring during autohemotransfusion (O3-AHT) for
psoriasis. Therapists also take all precautions to avoid the patient
and themselves inhaling concentrated ozone gas."
> While it looks promising in a lot of ways, I think that you might
want to do a lot of research before committing to undertaking a
treatment like this. It sounds like there has not been a lot of
testing to determine what the long term effects might be as, it
seems, that Ozone may have some other detrimental effects, It seems
that a lot of medical people agree that Ozone can have a positive
effect on wound care and many diseases but they are unsure of the
levels that can be used before it becomes toxic to other parts of the
body. It will be great if something like Ozone Therapy can cure HS
as well as many other things but I thing that a complete
investigation as to the possible side effects should be discussed so
you would know what you are getting into.

Purpose
Gluten is the protein part of wheat, rye, barley, and other related grains. Some people cannot tolerate gluten when it comes in contact with the small intestine. This condition is known as celiac disease (sometimes called non-tropical sprue or gluten sensitive enteropathy). There is also evidence that a skin disorder called dermatitis herpetiformis is associated with gluten intolerance.

In patients with celiac disease, gluten injures the lining of the small intestine. This injury results in weight loss, bloating, diarrhea, gas, abdominal cramps, or vitamin and mineral deficiencies. When patients totally eliminate gluten from the diet, the lining of the intestine has a chance to heal.

Removing gluten from the diet is not easy. Grains are used in the preparation of many foods. It is often hard to tell by an ingredient's name what may be in it, so it is easy to eat gluten without even knowing it. However, staying on a strict gluten-free diet can dramatically improve the patient's condition. Since it is necessary to remain on the gluten-free diet throughout life, it will be helpful to review it with a registered dietitian.

Oats is a grain the merits special attention. Oats are believed safe in patients with celiac disease although this was not always the case. The problem with oat products is not the grain but rather the manufacturing process. When oats are processed in the same facilities as wheat, contamination can occur even with the best cleaning protocol. Oat products can now be found that are not cross contaminated. These can be tried after an initial period of 6 months to see if they can be tolerated. Most, but not all patients can tolerate pure oat products.

Nutrition Facts
Depending on the foods selected, the gluten-free diet can meet the Dietary Reference Intakes (DRI's) of the Institute of Medicine.

The person who prepares the patient's food must fully understand the gluten-free diet. Read food labels carefully.

* Do not eat anything that contains the following grains: wheat, rye, and barley.
* The following can be eaten in any amount: corn, potato, rice, soybeans, tapioca, arrowroot, carob, buckwheat, millet, amaranth and quinoa.
* Distilled white vinegar does not contain gluten.
* Malt vinegar does contain gluten.

Grains are used in the processing of many ingredients, so it will be necessary to seek out hidden gluten. The following terms found in food labels may mean that there is gluten in the product.

* Hydrolyzed Vegetable Protein (HVP), unless made from soy or corn
* Flour or Cereal products, unless made with pure rice flour, corn flour, potato flour, or soy flour
* Vegetable Protein unless made from soy or corn
* Malt or Malt Flavoring unless derived from corn
* Modified Starch or Modified Food Starch unless arrowroot, corn, potato, tapioca, waxy maize, or maize is used
* Vegetable Gum unless vegetable gums are carob bean gum, locust bean gum, cellulose gum, guar gum, gum arabic, gum aracia, gum tragacanth, xanthan gum, or vegetable starch
* Soy Sauce or Soy Sauce Solids unless you know they do not contain wheat

Any of the following words on food labels usually means that a grain containing gluten has been used

* stabilizer
* starch
* flavoring
* emulsifier
* hydrolyzed plant protein

[Xaun]

On another more positive tune.. I can say I got a bit of good news today.. I was contacted by a former student of mine who is the lead News Anchor for Channel 12 in my area informed me that a position at the station had opened in my particular areas of expertise.. and that *crosses fingers* I stand a good chance of getting the job based on my qualifications.. I am just hoping that my HS does not in some way prevent me for performing the job or cause me to be overlooked at the last second because of how it affects me.

Wish me luck.. because if I land this job I might be able to afford to do somethings that were previously out of reach for me to improve my situation due to finances..

Here's to hoping for a ray of light in this dark tunnel..

[Firestorm518]

Good luck!

[Jenshiye]

Good luck!

(I used to buy pot for a friend with MS, actually got them on to it and they were lucky enough to go into remission for a few years. The doctor unofficially prescribed it as in that country it is illegal even medicinally.)

[Spart]

On another more positive tune.. I can say I got a bit of good news today.. I was contacted by a former student of mine who is the lead News Anchor for Channel 12 in my area informed me that a position at the station had opened in my particular areas of expertise.. and that *crosses fingers* I stand a good chance of getting the job based on my qualifications.. I am just hoping that my HS does not in some way prevent me for performing the job or cause me to be overlooked at the last second because of how it affects me.

Wish me luck.. because if I land this job I might be able to afford to do somethings that were previously out of reach for me to improve my situation due to finances..

Here's to hoping for a ray of light in this dark tunnel..

Good luck Xaun

[Xaun]

Good luck Xaun

lol you need to fix your siggy... TR - lvl 50 Grenedier and President of AK Tabula Rasa edition lol..