Hi, I just joined this group a few days ago. My sister told me today that if I didn’t frown, my head would feel better. Seriously?! If only it were that easy. I try really hard to have a positive attitude, but sometimes it’s just not possible with the pain that we all have to deal with. My pain/symptoms started after I was rearended while on my way to work on 7/3/07. I was diagnosed with Chiari and Syringomyelia about a year ago. My symptoms have worsened at an alarming rate the last couple months. My hours were just cut at work, because my boss could tell that the pain was becoming too much. I’m lucky to have an employer that actually cares about me. So, my main responsibility right now is to do what I can to feel better. I’m in the process of trying to get in with Dr. Ellenbogen, who is a Chiari specialist up in Seattle. I’m frustrated, like most of you are, with my family’s reaction to all of this. In the past, they have said that I’m the strong one and that I have a high tolerance for pain. Lately, they seem to have forgotten this and treat me like I’m exaggerating the pain. The funny thing is, my sister was more dramatic about her arm being sore after her flu shot than I am with all my pain. Seriously?! She has NO idea what I deal with on a daily basis. I wouldn’t wish this on any one, but sometimes I wish she could walk a day in my shoes. Thanks for letting me vent a little. I hope you are all having as good of a day as possible:)
hi i'm sorry your sister is being like that- on here there is some great resources for talking to family about chiari. sometimes the hardest people to understand what we are going through are our family memebers, they dont understand it not because they dont want to but because they can not possibly wrap their heads around the idea that so many different symptoms can happen in such a short period of time and be so life changing and painful and so (what seems to us) perminant, although not perminant but constant.
As you can tell there are lots of great people here who are willing to share their knowledge,tips, and most of all support. Hugs to you
Thank you Lisa W:) I know my family is having a hard time with this too. Partly, because I was the “strong one” and I did hold my family together through some pretty hard times. I need to realize that just because I can’t be my family’s rock anymore, doesn’t mean anyone else is going to take on that role for me. I’m lucky to have a couple really good friends that do a good job at being there for me and now I have this group too:) I did send a link to the “spoon theory” to my mom and sister and that seems to have helped a little. I just need them to understand that I would rather “me” be the “old me” too!
so sorry you are going thru this....people so full of useless advice , i have found...lol....give me a break..don't frown and all will be good...no one know what you are going through...but here..on our site..we get it.....
i am typing w/1 hand again..b/c of my balace issues...i fell again.....family is 'done with it'...trustath me when i tell you...they don't have too much empathy these days...lol
Awe…Lori, thank you for responding even when you only have the use of one hand:) I wish I could give you a hug. I’ve fallen twice in the last week and twisted my ankle on top of everything else. So, I understand your frustration. I wish our families would “get it” but at least we have each other. I get a lot of useless advice from friends and family. I wanted to tell her that I’m frowning BECAUSE of my head hurting, but I bit my tongue. I’m currently having to live with my mom, sister, her husband, and their kids. So, I have to bite my tongue a lot to ensure a fairly non-dramatic household. I had to move in with my mom when my PIP ran out and the medical bills became more than I could handle. The funny thing is…my sister just came down with the Cold that I’ve been trying to get over and here I am trying to take care of her! I made her some tea & food and helped take care of my 18 month niece, which I really shouldn’t be doing. Why am I doing this? Oh well, I would rather be the kind of person that helps when I shouldn’t than be like her. Plus, my niece is adorable and is, without a doubt, the highlight of my day:) I hope your arm/hand get better soon!
I'm new to the group and also waiting to see Dr. Ellenbogen. I was told that I had a Chiari two years ago, but the neuro that saw it assured me that it couldn't possibly be causing me any trouble and that it was a "normal abnormality". I'm sorry that you aren't getting the support that you need from your family. I hope that you get in with the Dr. soon and start getting some relief.
Thank you Melinda:) Yeah, the Neurosurgeon that diagnosed my Chiari and Syringomyelia about a year ago didn’t seem very concerned either. He just wanted to wait and reevaluate in 2 years. Needless to say, I’ve gotten worse since then. His attitude at least forced me to start doing my own research, which is how I found Dr. Ellenbogen. If I’m going to have brain/skull surgery, I want one of the best! I hope to get the technicalities w/ referrals and such taken care of soon, so I can see him A.S.A.P. I hope you get in soon also:)
Families are crazy sometimes! This made me laugh - stop frowning! I wish it were that simple, don't you? I hope that you are not letting their comments get to you. You (and all of us) know your pain is real. They are right about one thing - you are STRONG! All Chiarians are!
Thank you Carla Jo:) You are right…families are crazy sometimes. My sister thinks that just being positive will solve everything. Don’t get me wrong…I agree that a positive attitude can CONTRIBUTE to everything working out, but just putting a smile on your face won’t solve all of your problems. My sisters answer to everything is…things have a way of just working themselves out. My sister has never had to deal with anything. She was the “baby” and has always been treated as such. My mom has been bailing her out her entire life. My mom basically graduated high school for her. My mom has paid some, if not all, of my sister’s bills her entire life. My mom is currently supporting my sister and her family. Up until 6 months ago, it was just my sister and my niece. Now, it’s my sister, her new husband, his daughter, and their baby on the way. So, if I were her I would probably believe that “everything works itself out,” because for her it always has. I’m proud of the fact that I have ALWAYS paid my own bills and dealt with my own responsibilities, even through all of this…so far anyway. So, my point is, I take my sister’s so called words of wisdom (LOL) with a grain of salt. If and when it does get to me, it’s nice to know I have people that understand and who can help put things into perspective…or just have a good laugh:)
checking in on ya crystal....any more words from the wise to you??lol
you better be proud of yourself...taking care of things by yourself...being responsible....I have a person in my life that always says..'i'll all work out'....what the heck does that mean??? my motto is pray to Heaven ..but row to shore.....usually, w/o action ..nothing happens!
so...sometimes..i guess we just have to grin and bear their stupidity.....lol
I hope you and everyone here had a good Thanksgiving:) I was spared any words of wisdom today…lol:) That was definitely something I was thankful for!
I like your motto. I wish a certain someone would understand that taking action is an important part of resolving problems. Things don’t just work themselves out…People need to WORK things out.