Getting myself together and back on track

Good Morning everyone! I hope this beautiful, sunny day finds you well:) I'm working hard on having a positive attitude and moving foward towards feeling as well as possible.

I had my MRI's done on Wednesday and go back to the NS on 5/23 to see what he thinks my treatment plan should be. After my NL cancelled to two appointments I had with him, my primary has referred me to a new one. It amazes me that you don't get to talk to a human being when you try to get an appointment. I had to leave a message and they will get back to me...not a comforting situation LOL As far as my gastro problems go, all of the biopsies came back negative for cancer so I am relieved and feeling very blessed about that! My meeting with the surgeon for that last Thursday was very uninformative, he asked me what the gastroenterologist wanted him to do...again not very comforting! He's reviewing my chart and test results from the hospital stay, consulting with the gastro dr and will get back to me.

So, my goal for today and each and everyday is to just do me....take the best care of my self as possible, stay on track of doing all that I can to have good quality of life and being happy. Those are the things that are in my control right now....attitude, feelings, my happiness....I need to look inside myself and to God for my strength, courage and faith that I can cope with this new life. I've read so many life stories of you all and I know that while I may have alot going on right now, if you can all cope with this, than I can as well:) Thanks so much for letting me "talk" it all out here. It helps so much to know that I'm not crazy, dippy or goofy as one co-worker recently replied upon hearing I had Chiari. Sometimes I feel so very sad that I can't make people understand what it like to walk around with this in my head.

I think my husband is just in complete denial about it. He doesn't want his life to change...he wants me to just be better and resume life as it was before. I just think that I have to stop worrying about even his needs and just try to do my best to care for myself right now. It's hard because I have all of these invisible chronic illnesses going on,...and everyone says "you look great- you're better now right"...NOT REALLY!

So sorry for rambling on....just really need to get it out of my head. Does anyone else have trouble trying to get close family members to understand them? It makes me sad that he just wants to ignore the whole health situation I'm going through. I'm thinking about seeing a therapist who deals with invisiable disabilities just for my own piece of mind.


I look great too so I hear. People are very uninformed about CM. They don't quite understand that everything is controlled by what comes out of the hole in our heads. I'm done trying to explain things. We have to validate ourselves and not rely on others. We know how we feel. I don't feel the need to let others feelings control mine anymore. Control what you can. Eat well, exercise if you can. Do what brings you joy. Take rests when you can. There are books on CM for families to read for information. This forum has been a life-saver for me. I can empathize with all. We get stonger in numbers everyday. There is loss with CM. I was healthy, active, full of energy, then, just Bam! I might have been hit over the head with a sledge hammer. There are stages of grief with all losses and everyone experiences them. We are in this together. Take care. God Bless.

Thank you so much for your support and encouragement....I do think my husband is scared and in denial right now. I've had some time to try to come to terms with it and I guess I need to give him space and time to accept and deal with it in his own way. I appreciate the fact that you are all here, sharing and learning and encouraging as we go. It will get better, maybe easier for me, us as we go.


We all know how hard it is to explain to our family and friends how we can look healthy but feel so awful. I haven't figured out how to put a link up on here. (never works for me) but one of the members Bearly Burnt has a great blog and she posted a "Letter to Normals" that blew me away. I could cut and past but would rather direct you to her blog because it's great Web Address is.... Also look up Spoon Theory. Bearly has a link to it too. ...Wendy

I love that you said, "just do me"! That is one great attitude. Just take care of yourself! One day, I hope, everyone will know about Chiari and understand a little more but until then keep just doing you!!!!!!! Feel good! xoxoxo