Offline IMLast updated Sun Apr 09, 2006 Member since April 2006
MY BLOGROLL
Oprah - why have you looked beyond me? Ignored me? Not been willing to help with something as simple as a MENTION of my disease on your TV show? Am I really that unimportant? Reply
Let the rant begin... Full Post View | List View
America's talk show "godess" has been contacted numerous times by HS sufferers, so why does she continue to ignore us?
- Yet another day in paradise
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Dear Oprah:
Today I am flaring. What does that mean, you ask? Well basically, it means that many of these little "aliens" have decided to attack my body all at the same time. I had a stressful day yesterday, and I am sure that the stress from yesterday is the cause of my flare today. It's funny how it works actually. Something stressful happens in my life, and the stress of the event isn't the only thing that I have to think of. Nope. I get to worry about the impending doom that that one little stressful event will cause.
Flares are fun, Oprah. And by fun, I mean TORTURE. As I write this here letter to you, I am wearing nothing more than a tee shirt. Why? Because the pain of putting anything else on would be unbearable. Since I can't put anything else on, that means that today is an "in the house" day. If I can't wear clothes, then I can't go out. Can't run to the dry cleaners; can't run to the market to buy something for dinner tonight; can't run to the bank to make that deposit to ensure that the check I wrote clears. Nope. Can't do it. Not today. Probably won't be able to do it tomorrow either. But hey, this is my life and my problem. The problem you have absolutely no interest in hearing about.
My physical pain is unbearable most days. If I move the wrong way or accidentally bump one of the aliens, the tears from the excrutiating pain are almost impossible to hold back. But what is a grown woman supposed to do? I can't always hide the pain I am in, as it reads like a book on my face. So the only thing I can do is lock myself away in my house - hoping and praying that tomorrow will be a better day.
I wouldn't wish this disease on my worst enemy - that's how horrible it really is. My life is an endless cycle of pain and despair. Over 1/2 of my life has been plagued by this hideousness, and there is not a single thing I can do about it. It really gives me a lot to look forward to in life, seeing as I can no longer work, cannot leave the house most days and have no desire to go out and about. My life is so limited that it almost isn't worth living.
But why DO I go on? Why do I endure the torture that each day brings? I will tell you why. Because despite all of the pain, the anguish, the hideousness of my body - I haven't given up hope. It is a battle to hang on, but I refuse to let this stupid disease win. I am stronger than that. I am fighting each and every day of my life. Fighting for awareness of this horrible disease. Fighting with my own demons that call to me and bring me down. Fighting with the pain that limits me in so many ways.
Yes, I suffer, as do others. But I would rather reach out my hand to others who suffer, and give them all of the comfort and support that I can, rather than just wallow away in my own self pity. My life has little purpose since this disease took over my body, but the small purpose it does has is enough to keep me going.
Thursday April 13, 2006 - 03:27pm (EDT) Permanent Link | 2 Comments - Have you ever had a boil?
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Dear Oprah:
I am feeling especially miserable today. I did not sleep well last night, because no matter how much I tossed and turned and turned and tossed, I could not find a comfortable position. Due to my lack of sleep, I know that today is not going to be a good day.
Well my sleepless night left plenty of time for thinking, and so I thought I would ask you a question: Oprah, have you ever had a boil? You know what I am talking about - the large painful blistery type things filled with pus, that are usually caused by localized staph or strep... Well, as most of common America has had one - or knows someone who has, I will assume you know what I am talking about.
When you get a boil, what do you do? You bitch and moan for a few days until it goes away... or you rush off to your private doctor and he lances it and gives you a prescription for antibiotics and after a few days of bitching about it to your friends and family... telling them how painful it was, etc. - it is over and done with and you go on with your life.
Well, now I am going to tell you a little bit about my disease. I know that the emails that were sent to you were jamb-packed with information, but I am guessing that you never even saw any of those emails, because only a heartless "humanitarian" would ignore such desperate pleas from people who are in so much constant pain...
My disease started with one "boil". It appeared on my right buttcheek when I was barely 13 years old. Of course my mother took me to our family doctor and it was lanced, I was given antibiotics and sent on my way. After the "boil" went away, I never thought of it again, until.... I got another "boil" in a different spot on the same buttcheek. "Oh my God! What have I done!?!" I thought to myself. "I must have gotten 'something' from that one time I slipped and ended up accidentally sitting on a public toilet seat! Oh, my mother warned me that this would happen... it's all my fault."
I had heard my mother say something about herpes that day we went to the doctor, and I, in my infinite wisdom of 13 years, just KNEW that that's what I had. I was so afraid of what people would think - especially my overly-Catholic mother who often jumped to conclusions. I knew that I couldn't tell her, or anyone else and that is when my web of secrets and lies to keep my secret began.
For the next 10 years I kept my "secret thing" hidden from everyone. For the next 10 years my "boils" continued to spread - first taking over my entire buttocks, then moving on to my inner thighs, my groin, and my stomach. The more "boils" I got, the more scars they would leave and the harder it was to hide. I had to stop wearing shorts, stop swimming and stop playing sports that I had always loved to play. I couldn't risk someone seeing this hideous "thing" that plagued my body and shorts and bathing suits certainly didn't hide it. I made up excuse after excuse as to why I no longer "wanted" to do the things that I had once loved. This disease that I had became an all-consuming part of my life.
I hated having to hide. I hated not being able to enjoy things anymore. I hated it!
This is not even the tip of the iceburg, but merely a little glimpse into the beginning of my life with HS.
Tuesday April 11, 2006 - 08:57am (EDT) Permanent Link | 0 Comments - Just tell me WHY
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Dear Oprah:
While growing up, I tuned into your show every day. I was a loyal viewer for most of my formative years. I often thought about writing in to you at different points in my life, hoping you could help me. I never did pick up that pen or send in that email, as I did not think that my "story" was justified in taking up your producers' time. I have never been a selfish person, and I thought that someone else might be able to benefit from your help more than I could.
I have grown up quite a bit since my silly childish days of wishing I could be on the Oprah show - just to be on TV. But since those days I have found a serious reason as to why I legitimately should be on your show. I have contacted you about this many a time, and have not received so much as a form reply email back from you, your producers, or anyone else at Harpo.
Oprah, I have written to you time and time again about my hideous disease called Hidradenitis Suppurativa. As a matter of fact, many other people who suffer from this disease have also written to you and as far as I have heard, not a single ONE of them has received a reply. Do you often receive mass emails/letters/communications about a serious topic that affects so many people and then choose to ignore it - as if it weren't even there?
We are not asking you for money Oprah, not one person has asked for a donation - despite the fact that a good number of people with this disease are living of very fixed incomes, disability or are unemployed, like myself. The goood Lord knows that you make more than enough money that if you were to throw us a few bucks you wouldn't miss it, but that is not the reason for us writing to you.
Oprah, all we (as members of the HS community) have ever asked of you is to live up to the name that you have made for yourself. You make yourself out to be such a caring, wonderful person - yet when so many people write to you out of desperation, you turn the other way? All we have ever asked of you is to MENTION our disease on your show. Mention that it is the "Hidden Disease" - tell the viewers at home about how this horrible disease wrecks our bodies - making it nearly impossible for us to function in any type of normal activities. Mention to the viewers that most people are ashamed to mention this disease to their doctors or close friends and family members - because they are ashamed. Let the viewers know that although there is not cure for this disease, they are not the only ones who have it (as so many of us thought before we found each other). Let them know that there is a community of people out there who suffer the same as they do. Who suffer knowing how difficult it is to get anyone to listen to us.
This is not an easy disease to cope with, and one of the most frustrating parts of this disease is realizing that no one is willing to help us. There is very little research being done in this country - why? Because the disease is practically unheard of. It remains this way because we can not find anyone with a big enough voice (such as yourself) to take a few minutes out of her life to mention this disease to the huge platform of people that tune into your show everyday.
Is there something that we are missing? Is there something more we need to do to get the help we so desperately need from you? Would me promising to name my first-born child after you persuade you to help us? If that's what it will take, then that is what I will do. I am desperate Oprah - the people who suffer from this disease are desperate. We need someone on our side - someone to be our VOICE - if even only for a 15 minute segment on a TV show - 15 minutes is better than nothing and at this point, we'd take anything that we could get - because something is better than nothing.
I just want to know why we have been ignored? Why, if so many people wrote about the same exact topic - and if you are so concerned about making the women of America aware of the issues that they must deal with in life - why have you just chosen to ignore our pleas?
Once upon a time I thought that you were the most caring person in the world. Now, after seeing email after email go without a reply, I have had to change my mind. Sure, you do help a lot of people. I realize this and commend you for the work that you do with the Angel Network and the various other projects you have taken under your wing. But what about those who suffer in your own back yard? Why do you choose to overlook them?
I never asked to have this disease. I didn't do anything to bring this disease upon myself. I merely suffer. I suffered in silence for the first 10 years of my life with this disease, because I thought I was the only one who had it. I thought that I had an STD. I thought that I was a leper and would be shipped off to an island if ANYONE ever found out about it. I have suffered miserably - and even worse - I have suffered alone.
There are two kinds of pain associated with this disease. There is the physical pain which is painful beyond your imagination. Imagine hurting so much that you cannot even put clothes on some days. The physical pain is wretched - but the emotional pain of this disease is even worse. Because our sense of normalcy is gone, so is our motivation to be normal. If it hurts to put clothes on, or to walk, or to move, then why not just lay on the couch all day?
Oprah, I wouldn't wish this disease on my worst enemy - that's how horrific it is. If you wish to find out more about Hidradenitis Suppurativa, please visit one of the following websites:
http://www.hs-foundation.org
http://www.hs-usa.org
I know that writing to you here isn't going to get us the help that we need. I just don't know what else to do. We've sent countless emails and have yet to get a response. So perhaps just venting about it will help ME to deal with your lack of compassion and willingness to help out those who suffer...
Sunday April 9, 2006 - 08:45pm (EDT) Permanent Link | 3 Comments
