I'm so glad that we opened the forum, and you guys are registering. I wasn't able to post over at MSN the last few months (MSN wasn't letting me
), so I was feeling really left out!
Anyway, some of you may remember/know me, some of you may not, so here is my little (but long lol) introduction!
I'm 29 years old, and live in New York. I was diagnosed with Cooley's Anemia at 9 months old, and started to receive blood transfusions at that time, and have been ever since. I receive 2 units of packed washed cells, every 2 weeks, and use Desferal every night (try to, anyway
).
I've had lots of stuff happen to me over the years, and lost a few organs lol, but I'm doing ok right now.
I'm sure you'll be hearing a lot about my unfortunate mishaps, but if at any time, you'd like to know something about me, please do not hesitate to ask me! I'm a very open person, and will tell you pretty much anything. I love helping people, and also love using my horrible experiences to my advantage by helping others who may end up in (or have been in) the same situations. I also have a huge sense of humor, so you will never offend me with your questions.
When I was 22 years old, I became really fed up with doctors and nurses treating me and others like pieces of junk, so I started taking classes toward my nursing degree. I figured that if I became an RN, I would be able to treat patients better than I had ever been treated. I also figured I'd learn more about things, so I can manage my own health better, by understanding illnesses, and how doctors speak (their medical language), and also maybe get some respect by the medical staff for once, which I have now. I was sick of being treated like a baby who didn't know what I was talking about, so now when I come in contact with any type of medical staff, they know that I'm educated and know that they cannot fool me. It's really sad, the things you need to do in this world to take matters into your own hands, when doctors won't listen or treat you for something.
So anyway, I continued on, and got accepted to nursing school. In 2004, I obtained my LPN (License Practical Nursing) license, and then when I graduated nursing school in May 2005, I sat for my RN (Registered Nursing) state boards and received my RN license in July 05. I'm now taking classes toward my Forensic Nursing certification, which I am almost done with (one more class), and I'm also taking classes for my Masters degree in Nursing. I'm not sure whether I want to be a Forensic Nurse Practitioner, or a Pediatric Nurse Practitioner yet, but I still have time to decide while I'm taking my classes. I've always loved Forensics, since I was a little girl, and when I found out they opened up the field of "Forensic Nursing" I couldn't wait to get my RN license so I could apply for the program.
I'm having a lot of insurance problems right now, so I actually have my job on hold, until I fix them. I have the position for pediatric home care, but the coverage that they want to give me will not cover the expenses of my blood transfusions and desferal, so I am trying to get things under control. I cannot stand the government we have.
I took this particular job, because it wouldn't have me standing on my feet for 14 hours a day, and would be really flexible, so I'm really trying to get this insurance problem under control.
I'm also very involved with the Cooley's Anemia Foundation in New York, and became the Suffolk Chapter's Patient Services Coordinator in 2001. I'm strictly on a volunteer basis, because I refused to have the Foundation that works hard to help people with the disorder that I have, pay me money that people have donated for us. I work for them from home, but I go into the office if needed. So, I should probably tell you guys, that if you happen to call the Foundation and ask for me, I won't be there.
If you need to contact me for something, you can do so by private message or email, and I'll point you in the right direction. The best people to contact would be National Cooley's Anemia Foundation, though, because they help Thals all over the world, and our Chapter here in Suffolk only handles Suffolk's patients. I am always in contact with National, though, so I will always try to help somehow if you cannot get it from them yourself.
I knew Lisa personally, and know what a wonderful person she was, so I am extremely happy to be able to help Andy carry on her legacy. I also want to see our members happy, as does Andy, so we have been trying to perfect this site for all of you, to give us all a way to communicate better. I'm very happy with the way things turned out, and I hope that we can eventually get everyone here, so we can make this place our home. Andy and I are still perfecting things, and we'll be adding things as we go along. If any of you have any suggestions about the forum or anything, please do not hesitate to contact us and let us know. You are just as much part of this forum as Andy and I are, and without you guys, this forum would be non-existent. So please, voice your opinions.
I'm looking forward to posting with you all, and getting to know you all better.
By the way, if you see a guy named "Richard" running around here, that is my boyfriend of almost 5 years. We have known each other for 12 years now, and he's an awesome guy. I'm sure you guys will like him.
Sorry this post was so long.
