Sunday, May 22, 2011

A Letter To People Without Chronic Pain

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand... These are the things that I would like you to understand about me before you judge me...

Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me-- stuck inside this body. I still worry about school, my family, my friends, and most of the time - I'd still like to hear you talk about yours, too.

Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!¨ I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.

Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "concentrating", "being sociable" and so on ... it applies to everything. That's what chronic pain does to you.

Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "But you did it before!" or Oh, come on, I know you can do this!" If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are--to be physically able to do all of the things that you can do.

Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it¨ may frustrate me to tears, and is not correct if I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctor and I am doing what I am supposed to do. Another statement that hurts is, "You just need to push yourself more, try harder..." Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now - it can't be put off or forgotten just because I'm somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

In many ways I depend on you - people who are not sick. I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I have asked a lot from you, and I do thank you for listening. It really does mean a lot.


Friday, May 13, 2011

Updated images

I have decided to post images of where I am right now and update those images to see if progress has been made. I will not post all the areas affected as some are rather personal considering my labia are heavily infected. What I do post here should be enough to give you an idea. Please remember no matter how bad these images look to you there are people out there with this disease who are 10 times worse that I am.  The only other option I have open to me is surgical. I've seen pictures of the scars and disfigurement left behind after the surgeries if at all possible I would want to avoid this.

Now for the images:

Left Armpit

Right Armpit

top of right breast above the nipple

underside left breast - this area has been healing really well compared to how it was last year

underside of right breast - also healing quite well since last year

front groin area - this area is getting worse all the time and is the reason why I have trouble walking. The lump area is over 4 inches across and hurts like hell. New areas are forming around it. Last year there was only a few lumps.

When I mention last year that is when my last set of pictures were taken. There is a topic on my blog. look to the left where my links are and you will see one that says My HS Story that link will lead you to the previous pictures. Most areas have healed somewhat from last year except my groin and left underarm and now my right underarm is getting bad again.

HS Awareness Purple Ribbon Campaign

Hello there! I’m Teri Korri, and, I’m your neighbour. First of all, thank you for taking time to read this. For 13 years, I have suffered from a very rare auto immune condition named Hidradenitis Suppurativa, otherwise known as HS. Please read below.

WHAT IS HIDRADENITIS SUPPURATIVA?... (HS), also known as 'Acne Inversa', is a physically, psychologically, and socially disabling disease affecting inverse areas of the body (those places where there is skin-to-skin contact - armpits, groin, breasts, etc.), and where apocrine glands and hair follicles are found. It is non-contagious and recurrent; typically manifesting as a progression from single boil-like, pus-filled abscesses, or hard sebaceous lumps, to painful, deep-seated, often inflamed clusters of lesions with chronic seepage involving significant scarring. Abscesses may be as large as baseballs, are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation, culminating in drainage, often leaving open wounds that will not heal. These "flare-ups" are often triggered by stress, hormonal changes, or humid heat. Drainage of the lumps provides some relief from severe, often debilitating, pressure pain; however, pain occurs 24 hours a day, 7 days a week for HS sufferers during flare-ups, and is difficult to manage. Persistent lesions may lead to the formation of sinus tracts, or tunnels connecting the abscesses under the skin. At this stage, complete healing is usually not possible, and progression of the disease in the area is inevitable. Occurrences of bacterial infections and cellulites are likely at these sites. Fever and fatigue caused by acute inflammation and the physical restrictions caused by pain and skin deformation, people often cannot work, drive, exercise or even perform day-to-day tasks, and are ashamed to go out in public. HS sufferers may go through severe bouts of depression, avoid public and inter-personal contact, become sedentary and often overweight. HS typically goes undiagnosed for years because patients are ashamed to speak with anyone. When they do see a doctor, the disease is frequently misdiagnosed. Only relatively few physicians are able to recognize it and even when they do, suggested treatments are often ineffective, temporary and sometimes even harmful. There is no known cure or any consistently effective treatment. In advanced, chronic cases, surgery is often the choice, but recurrences of HS are not uncommon. Historically, HS has been considered a rare disorder, because it is difficult to accurately estimate the number of HS victims; they conceal their condition, even from friends and close relatives. Estimates, however, indicate at least 1 million - potentially up to 12 million - Hidradenitis Suppurativa sufferers in the United States alone!

So now that you have read a brief description of what HS is, you may understand why not many people have ever heard of HS. Having been a victim of HS for 13 years, I am tired of being told there is no hope, that no research is being done because it is not considered profitable enough. It is my hope to begin to spread the word about HS with one person, one neighbourhood at a time. In an effort to raise awareness for HS, I have taken this task upon myself, with your help of course..…..the task is easy, the rewards will be huge. Purple signifies the color for auto immune diseases. All I ask that you do is simply tie a ribbon around something in your yard. A tree, a mailbox, a light post, anything in your yard that will make the ribbon visible from the street. I ask that you leave this ribbon up for at least two weeks and at the end of that time, pass on this information, to a family member, a co-worker, or a friend, a church member …basically anyone. Chances are that besides myself, you actually are acquainted with someone who has HS but has never disclosed this information to you due to the overall embarrassing nature of the disease. Chances are that if half of you do pass this on, someone who has or knows someone with HS will receive this. So… on that note, I am asking for your help in helping me to get the word out and help raise awareness for this “hidden” debilitating illness, HS…“The hidden disease“. There are so many who suffer in silence and I feel I need to help to change that. This is for now, the only way I can begin to undertake this task. To those of you on Facebook please consider changing your profile image to a purple ribbon and directing people who ask you questions to this note.

I really want to thank you for your time and for your participation in my efforts to bring this to light so that more people know that we are here and just want to be heard so that one day, we may find a cure, or even a suitable treatment. I appreciate your support more than you can imagine. Doing such a small thing can possibly help millions world wide.

For more information on HS please visit my blog at for the my story with images

Again, I thank you from the very bottom of my heart. This campaign originally started by Dale Rickwood 

Thursday, May 12, 2011

Awareness campaign

There is a campaign on Facebook to help raise awareness of Hidradenitis Suppurativa
and here
and here
and here

If you have a Facebook account go read one of these links and hit like. Let's get the word out!!!! Also the woman who started all this, Dale Rickwood has managed to get some press for the event. ABC news video

News article

Finally there is an online petition with currently over 10,000 signatures. Please sign it to help us find a cure.