Hi Everyone!! I am new to this site and looking around it seems so awesome to find a bunch of strong positive people who not only understand you but also support you! Thanks for accepting me!
My name is Niki. I am from upstate NY. I've been going through testing for all my symptoms for about 4 years. I FINALLY got the diagnosis a couple of months ago. I feel alittle relieved that there is a name for this and that I'm not really crazy! :)
Now that I know though, I have to say I'm mad as hell! I miss who I was and am not really so impressed with this 'new' me. So I've decided to take my health in my own hands and am researching and learning and am going to do what I feel is right to live my life to the fullest possible. I don't know if diet/lifestyle changes and vitamins will do me any good, but it won't hurt to try right? :)
I haven't told many people about my diagnosis. I guess I'm still trying to figure out if I should. I try to keep a positive outlook as much as possible otherwise I'd go crazy! :)
I'm so glad I found such a wonderful community to belong to! I look forward to getting to know you!
Niki,
You have such a great attitude and that is going to help you with learning to cope with the pain. I believe you feel the same way most of us feel, angry. If you find anything that help please let the rest of us know.
Thanks,
Stacey
I do have a great doctor right now. The only thing we don't really agree on is the pain meds so far. She doesn't like to prescribe them (which I understand) however sometimes (most times) Tylenol just doesn't cut it.
The thing that makes me really angry is I don't feel like a good parent most of the time. My kids are 9 years apart and when my son was young I was coaching and in the PTA and running all over the place. Now that my daughter is involved in these things, it's a chore sometimes getting her there. :(( My guilt over that is huge!
I look forward to getting to know everyone and learning!
hi nike. . you have a lovely spirit. .. welcome to this group of lovely people. i hope to chat with you soon in the chat room too. love and hugs your way.
Hi Niki, I am also fairly new to this site and so happy that I found it. Welcome!
I am happy that I found somewhere that I can be 100% honest and not have to worry about the negative comments. I know that my family and friends mean well but their comments can be frustrating and hurtful at times. The only reason I did not make it known to everyone in the beginning is because I needed time to come to terms with it and learn how to process all of the information. I slowly started letting people in and sometime they get it and sometimes they don't. I took my mom to my doctor with me so she could hear first hand what my doctor had to say. It helped her to understand more of what is going on.
I have tried multiple combinations of medications. I tried to do my own research on those medications and treatments. I changed my diet but most of all I changed my attitude. I stay positive and let go of the negative feelings and thoughts when they attempt to creep back in. I am already in pain so holding onto anger, frustration, guilt, will only make it worse.
Again, welcome, and I look forward to hearing from you.
Hi! Keep up,that positive attitude, you seem so upbeat. I think that positive ness is a great approach in this awful road we’ve been delt.
I am too mad!!! Mad that I hurt. Mad I can’t get up right now and clean the kitchen or run the vacuum. Mad I’m to tired to do my college assignment, mad it can’t think straight and I get foggy.
I understand how you’re feeling, and well you found the best place to come. This group is awesome, and I have read so many helpful,discussions and comments, and I’m so glad to have found it too.