Cheryl N. - Florida

Information, Communication and Support are the keys.

Information is essential in knowing what you are up against in any problem, but it is so very, very important in the case of a rare disease. Information can not only be found in all of our databases and files, but just put out a thought or question on our boards and you will not believe the amount of people that will help you do research. It is unbelievable, you do not have to even do the search yourself, and you can just read. Everyone here that finds current information tries to make sure all others know about it.  But no matter how much information on AVN I find, Marie finds, Greg, Mark, Linda, Karen, Sara, Barbara, etc. (you get the idea here) I know this site is so much more than just information. The communication and support of this group is what I value the most.

1. Knowing there are really other souls out there that have gone through what you are going through. Current members know how they felt, the days when you knew you were all alone; when you heard that you had avascular necrosis or osteonecrosis; when there was no one who could answer things; when others just did not understand why you were so upset. Okay I know our families and friends tried to comprehend, but they can not feel the pain, the hopelessness of the "rare" disease that kills our bones, "Wow" did you hear what I said, "this disease kills our bones" and "there is no cure" that was scary, I mean really scary. We have tried to be calm, we tried and we tried to be a good patient, but we were very, very scared. A search engine brought me to this site, I found people, I found friends, I found hope and I remember thinking, if these other people made it and are coping, then I know I can.
2. Finding out how they managed, what they told their Doctors, how long it takes to go through procedures, their facts of their surgeries, their lives and how they are better now, or that AVN came back, but no big deal, they are having preventive stem cell treatment in their CD, and on and on and on... Some of the people I have read about, emailed, or spoke to on the chat line, have made me feel so much better about what to expect, why you need to work so hard at rehab. I had ammo for my surgeon and knew things to ask. Each and every occurrence allowed me to learn something new from others.
3. Knowing this pain was not in "your head" as I and many others have been told by some of the wonderful Ortho's that have no idea what they are doing. What is worse?? Hearing that others have been told "they are too young" for a joint replacement. What are they to young for what? Are they too young for "No Pain", getting their life's back, not just surviving. Shouldn't we get the right to decide if I need to make decisions and about coping with joint replacement, coping with a joint that should have been replaced? Instead of having doctors say wait till next year and we will see if it has collapsed.
4. Having other complications that affect AVN and how others have handled the problems, sometimes they apply and sometimes you just can't image how someone could go through what they have had to face. Could some of the sister illness also be a cause of other blood disorders or fat necrosis? We have educated ourselves to start asking more questions, questions that need to be asked to scientist and specialist. To Dare-Devil Doctors that will take the answer of "no cure" as an insult.
5. Most importantly to me, having that "hand held" by others, whether it has been by phone, email, chat line, or IM. My rehab and surgery was much easier, because I knew YOU, ALL OF YOU were there for ME. No you were not someone I would know by face, and even by voice, but I know those prayers, thoughts and hugs were true. We ache and cry for each other. We are very special people. I think somewhere in the "BIG PLAN OF LIFE" we needed to meet each other. I am so glad I have gotten to meet everyone one of you. Each of you that post or speak on the chat line gives us something to think about, something to be grateful for and something to hope for. I look forward to refreshing my computer and seeing who has stopped by, who is new, who has the time that day to answer another's post, but I am most grateful for not being alone. Thank you for being here. Hugs from South Florida, Cheryl