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Thread: Hidradenitis suppurativa or HS

  1. #81
    Quote Originally Posted by Xaun View Post
    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".
    Omutb - President - Ring of Destruction

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  2. #82
    Quote Originally Posted by Jenshai View Post
    For what are we without them?
    Sad pandas with no pie!! ;<

    Quote Originally Posted by Spartanx9 View Post
    *hugs* Here's hoping the best possible situation can turn out for you Xaun
    *crosses fingerses an toeses*

    Quote Originally Posted by Omutb View Post
    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
    Last edited by Xaun; Mar 16th, 2008 at 08:33:07.

  3. #83
    =(. Xaun, I wish you luck and hope that you become well again.
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  4. #84
    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.

  5. #85
    *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
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  6. #86
    Quote Originally Posted by enigmatic View Post
    *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..

  7. #87
    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?

  8. #88
    Dear Xaun,

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

    Best regards,
    main characters on RK1: Kingduck138 220 Engi Mongoose135 170 Agent Nnivekccub 165 Engi Kingduck135 170 Soldier Mongoose831 160 Agent Healdocheal 150 Doc Atroxshade 130 Shade Nanottwink 130 NT Mongoose144 125 Agent Ducktroxjr 117 Fixer Eternalguard 65 Enf Boringname 61 Fixer Kingduck139 60 Eng Atheist 60 MA Mongoose142 30 DocMongoose138 15 Agent Mongoose141 21 Agent

  9. #89
    Quote Originally Posted by KingDuck View Post
    Dear Xaun,

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

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

  10. #90
    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.
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  11. #91
    hope God give u the strength to pass this just keep the smile and the positive attitude they are ur weapons against it .

  12. #92
    Thanks for the positive vibes.. was nice finding this after getting on my feet again.. And welcome back Windkeep!

  13. #93
    Quote Originally Posted by Hacre View Post
    Hug your jesus nano, you'll be fine.
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  14. #94
    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

    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...

    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 awake and aware fellow citizens?


    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".


    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
    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

    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?
    Last edited by Xaun; Jul 25th, 2008 at 05:51:08.

  15. #95
    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
    > "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
    > 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.
    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
    Last edited by Xaun; Jul 25th, 2008 at 05:50:00.

  16. #96
    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..

  17. #97
    Good luck!

  18. #98
    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.)

  19. #99
    Quote Originally Posted by Xaun View Post
    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
    Spartanx9 220/25/70 -Inactive
    [TR]Zuka Zamamee level 50 Grenadier, Executive of Aethyr Knights, Pegasus Server. -Long Live TR-

    Silirrion:I was a gimp

    I stand alone on the road to hell.

  20. #100
    Quote Originally Posted by Spartanx9 View Post
    Good luck Xaun
    lol you need to fix your siggy... TR - lvl 50 Grenedier and President of AK Tabula Rasa edition lol..

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