Sunday, June 3, 2012

Suffering In Silence......With a Smile!!!

Hey everyone!!! Welcome back to Kayz Korner!!! I'm back with my weekly insight into my life and dealing with a terminal condition. What's so funny is that I actually kinda sort of wrote Oprah this past week. I think I'm getting desperate. LOL!!! It's hard for people to understand exactly what you going through when there is a lack of information out there. I have been researching this condition for years and it's the same information on every website. I go to my doctor's office and they tell me the same stuff that I've read myself. I'm a Google and Bing nerd and if the info is out there to be found on the net, I can find it. But sadly, there is not much information out there. I live in Georgia and the closest specialist I have heard of is at the University of Miami. So what did I do, I wrote a letter.......and heard nothing back! Guess I'd have to be Oprah to get the kind of help that I'm looking for. So anyway, as I sit and wait for some celebrity to take an interest in my condition and get it some recognition, I am of course stuck at home or stuck going to visit my doctor for what feels like no reason at all!!! This is draining. I have 3....yes I said 3 doc appointments next week. A psychologist, a pain management clinic, and a dermatologist. This makes me sick. I'm not one of those people who likes to talk to everyone about how I feel. Especially a stranger. Like I said in my last post, I'm more of the suffer in silence type of person. As long as I'm not in too much pain, I will sit there with a smile and know one will ever know that there is something wrong with me. How can I possibly get pass this point. I mean I've been this way forever. My outlet has been writing or music. That always makes me feel better......or at least I can ignore it. And then on top of having to talk to someone, now I gotta go let someone tell me how to manage this pain!?! (@_@)........I am not a fan. No one knows how to deal with this pain and in reality there is no real way to deal when my cysts hit. They come just as fast as they go. I have between 3-5 of the most gut wrenching days of pain and then it's just gone and I'm left dealing with the aftermath. I'm never 100% and I've accepted that. I push past it and prepare for the next time. Is this really any kind of way to live life. Could you imagine not being able to workout or because you went to the club with your friends and worked up a sweat, that you would be in the hospital the next day. Things that I used to take for granted. People ask me why I always walk around with a smile.......because I can't get too stressed or I'll again be preparing myself to go to the hospital. It's a frustrating process. But then I look at what I have accomplished in my life. My last doctor's visit, I saw a new doctor. I told her that I had a 3 year old little girl and she was floored. Why!?! Because my body was and still is making it very difficult for me to conceive. I don't know if I'll ever be able to conceive again, but I did it! I couldn't believe what she was saying to me. Thinking about it now, kinda makes me want to cry, but I tell you what......through this entire process, I continue to grow stronger and stronger and no matter what, I will get the message out about this condition!!! Thanks for coming to Kayz Korner and please continue to spread the word !!! See you next time!!!

Monday, May 28, 2012

My Secret Society

Hi everyone. This is my first official blog!!! I like talk about everything from health and beauty to entertainment and politics. I'll give my advice on how I feel about certain issues and look forward to hearing feedback from anyone that wants to share their feelings. Let me tell you a little about me first, my name is Kay and I'm a 29 year old single mom born and raised in Atlanta, Ga. I joined the Navy and served 4 years out in Cali. Met some really great people and learned a lot and had some great experiences out there. I also had a life-altering change while serving my country. I was diagnosed with a skin condition called Hidradenitis Suppurativa, or acne inversa. Doesn't sound bad, but little did I know, I was in for a rude awakening. In the 9 years of having this condition, my doctors are almost at the same place they were when I was first diagnosed. I have had 7 surgical procedures and have been hospitalized a countless number of times. So, I started to do my own research and have found that there is very little information on this condition. No one knows exactly what causes it or how to cure it. So I went into depression mode because this condition and all my surgeries and flare-ups has left me permanently scarred. I would go out and have fun and always  have a smile on my face and be the life of the party (because that's my personality), but behind closed doors, I was going through so much pain and agony. Very few of my friends and even less of my family new exactly what I was going through on the inside. So, in this new age of technology and with so many people blogging about everything, I figured I would give this a shot. There are millions of people who have this condition and they continue to suffer in silence or they don't know that they have it because they are too ashamed to speak with their doctor or someone about it. Well I am here to save the day. Anyone, anywhere, anytime, I want to make myself available to you. No matter who it is or what you are going through. And it doesn't just have to be about the same condition that I have, but sometimes it is good to just be able to write and know that someone is listening......even if it's just one person. I've always believed that one voice can start a wave and change a pattern that can change the world. Until next time........this is Kay.......thanks for sitting in Kayz Korner.......TTYL