Into the LIght of the Day...

Dear Dercum's Disease, or should I call you by your other name? Adiposis Dolorosa....

For a number of years now, you have taken up residence in my body. I don't know why. Why did you choose me? What makes me a good host for you? You must have some way of overcoming my desires, hopes, thoughts. Because I did not invite you (at least on this plane of existence), nor am I wanting you to continue to stay. But you do...you bastard.

Because of you, I have lost my ability to go out and make a living. Although having enough money to live on would be a nice thing..it really isn't even about the money that makes me want to choke you. It is that you stole the way I had a reason to live. I felt good about myself when I was working with people. Both my clients and my co-workers. I felt like I was making a difference, or at least attempting to. I worked with adolescents and their families. I used to say jokingly, when my job got a little hard..."Well, off to change the world, one kid at a time".....but in my heart and soul, I hoped that this was true. I hoped that by working with any of the people I have worked with over the years, that this was my way to make a positive mark on our world. It was my way of hopefully working toward a kinder and gentler nation. But, then you came into my life, and I began to watch that slowly go away. In fact, it was slowly...so much so that in the beginning, I didn't realize it was you. You were there, silently taking over. My brain was not able to comprehend the way that you came unbidden and started killing me slowly. But there you were, you won.

At first, I tried to hide you. I tried to work and not pay attention to the pain. I tried to cover up that I was not able to concentrate, to make decisions. Partly you accomplished through the pain levels that were starting to make moving through this life difficult, but you also started messing with my mind. Subtly, but I noticed. It caused your friend fear to circle me constantly. My shiny aura was turning dark, and people were noticing. I don't think they understood that it was you that was changing me. Heck, I am not sure I was was aware that it was you....but nevertheless, you won. My coworkers, who were my friends, all started leaving me, as you....you are like an abusive lover...you want me all to yourself. So you made me say things, and do things that were not my personality, but people didn't understand that. They just said..."what is wrong with you" mostly to themselves....they thought I was changing. I was, into what you wanted.

Then, after you accomplished having me to yourself, you decide that you will also take away everything that I like to do. You are very mean. You have these ways of making me seem like I am a bad person, or non compliant. The doctors tell me that exercise is good for me....well, aren't you the cheeky one to make exercise be part of what makes me worse. So, my walks in the woods, my goals to hike the Appalachian Trail evaporated into a distant desire. I like to play music, you make that hurt too much. I like to paint, to draw, to do pottery, weave beads, make jewelry....I have lots of things I like to do, I am lucky that way....I used to say "I never get bored"...well, you have certainly seen to it that I can't do any of that anymore. I try to adapt, to get around your ways to shut me down.....but you seem to find ways to end everything I hold dear. (But, I don't give up, I keep finding ways....but I am not going to say that out loud, as I know you are just waiting to see what you can do to me next!)

So, my friends are gone, my hobbies are gone, my ability to take care of myself financially are gone, my ability to take care of myself in many ways are gone.....and it is all your fault. I hate you.

The other really amazing thing you do, is make people think that all this is my fault. You figured out how to take all this away from me, but what you kept intact......the way I look. In fact, you don't make me gaunt and sickly looking, you make me fat. No one believes that you can become fat without overeating, so everyone thinks that I am just lazy and don't know good nutrition. So this also makes me a liar in other's eyes. You have set it up so that no one sees you, they only see what you have manipulated.

I have learned how to work with you. I no longer cry tears of anger, and sadness that you have entered my life. I try to let people know that you are responsible for my current condition...I am outing you! I know others who don't want to let people know that you are trying to ruin their lives, and that is ok, but I have decided that I am telling as many people as I can about you. You have hidden far too many years. So long in fact that people think you are rare.

Here is what I want. I am telling people about you so that you can no longer hide. I am hoping that people will realize that you are just as bad as AIDS, heart disease, or Diabetes. People think I am just wanting to take pain killers to become non-functional and watch TV all day....really? Have I ever done that in my life???? I have worked, sometimes 2 and 3 jobs at a time. I have worked hard, and I have played hard. I enjoyed so many things, I had many interests and dreams....I had places to go, and people to meet. I was a kind of gypsy, I have always enjoyed travel and learning new cultures. You have taken that away, and I want people to know it is you...it is not me being lazy. And then the ultimate that people, including me, don't want to know or think about......you are a killer. You don't just stop at giving your victims pain, and fatigue, and weakness, and weight gain, and a host of other symptoms...nope...you kill. So, I am confused why people do not take you more seriously.

I am hoping that people read this, and realize that to end your grasp over me, to make you go away, there has to be research into how to do this. Because, as I have already said, you are good at hiding. But, we have at least one person who has dedicated her life to finding a way to eradicate you off the face of this Earth! She is hero to many of us. She is Doctor Karen Herbst. We are hoping that people will understand that I want this pain to end. I want all the medication that I am on, including the narcotics, to be a thing I can talk about in the past. That is now where my dreams go. I dream that one day, people will take you seriously, they will help Dr Herbst by sending her money to continue her research.

Please, those of you who may read this, I am asking for your help. I hope this doesn't make you mad. But those of us with this illness, this intruder into our lives, need your help. We are weak, in pain, fatigued beyond comprehension. We do what we can, but we would like you to help us get our dreams back. You can do this by sending money into the Fat Disorders Research Society (google them for info on how to donate), you can offer to help us out around the house, or by doing errands. You can also help by listening to us without judgment. If we tell you we use narcotics for pain, please....we don't need lectures about addiction, or your hand held out because you want us to share. If we tell you we can't come over to your party, please don't take that personal, we really want to be there and it makes us mad that we can no longer do things that are fun and to others are relaxing. Please also realize that this illness is real, and it is serious. It is progressing and prognosis can be death if a lipoma affects the lungs or heart. Your support to help us become warriors not worriers against this illness is what we want.

I began this blog writing to the illness that has invaded my body, and ended it with an appeal to readers of this blog (hopefully there may be a few! LOL) I am hoping that both of you are listening. And, if you could do me a big favor.....I would love if you could ask your friends, colleagues, family members to read this. I want awareness of this illness to come into the light of day. Namaste my readers.....I hope your dreams come true!