Before I got to this comment I said to my self two. Things!!! Women are so emotional lol and if No one went out on a limb to throw out an opinion that wasnt a typical " sugar coated answer", which is so nice to hear that ppl love and care and support u… But it we never heard another way to look at something… Well we would never learn! Sometimes u have to take a step back form the norm and embrace something that is different to totally get a grasp of something!!! I love controversy (as long as between mature adults) like this bc I learn!!! The most important thing is to live life w no regrets and if u r doing that well then yr ok!!! Also I think that u can’t accept everything… Me I haven’t accepted my chiari at all but I’m ok w it bc I have embraced it and am challenging IT everyday!!! Bc to me acceptance means I have to come to terms w it "do what I’m told " bc now I have a condition… Nope not me I iglnowledge what I can and cant do then try to find a way to do safely what I shouldn’t b doing!!! Bc I define who I am and what I do!!! Lol keep up the loving conflict!!! It doesn’t mean anyhatm!!! And those it does offend should try to look from different point of views u might learn something new!!! Hugs. Abbey
Julie said:
Oh Lori…I can SO relate to the steroids side effects. They are just horrible. HORRIBLE. How long do you have to take them?
I honestly was just sharing my opinion and trying to contribute to the conversation in how I’ve dealed with things. I have apparantly offended. I did not direct anything at anyone. I’m terribly sorry.
Wouldn’t this world be a terribly boring place if we all were exactly the same? LOL
I might be the only one who LOVES the steroids!!! I have to go on them a few times a year for asthma and they pump me full of energy! For a little while I do not feel exhausted all day! They also make me somewhat manic and happy to the point of getting on my families nerves. I get all the kids moving and cleaning up in an upbeat annoyingly pleasant way!
As far as acceptance...I don't think I have. I still cannot look into the future and accept feeling like this forever. If surgery is something in my future I am holding out hope for relief. I take advantage of the "good" days and the "bad " days still make me angry or sad. I think if it was just me who this affected I'd have an easier time, but I feel like my husband and kids were given a raw deal. I am not the mom to my two little ones that I was to my older children. There aren't as many walks, or playtime on the floor, or even book reading because of the problems Chiari causes sometimes with my eyes. I often have to put the tv on for my four year old because I just HAVE to sleep for a little while. I need more of a nap then my one year old sometimes!
Julie, I loved your "why not me statement" . I say that all the time. I have seen people much better than me go through so much worse than what I am going through. I used to spend all my time talking about this, but I have realized that people get tired of hearing it. I want to give my family a happy life and I have realized that bringing this up all the time causes them to be stressed...not because they don't care but because they DO care and are afraid of something happening to me.
When I have really "bad " days I get angry...wait for them to pass(sometimes fearing they won't but they always do)...and try to live the best I can on less symptomatic days. My main struggle comes from the feeling as I said before that I am failing my family. We had to go recently to our children's school and tell them about my condition because I sometimes just can't be involved in their schoolwork as much as I should be or used to be. This has been a turbulent year for them and I have seen their grades slip...not terribly...but with my preoccupation with my illness and the recent death of my mom and my dad's failing health who lives with me...they have certainly been affected. My husband who works very long hours and still comes home and helps me has had to bear more than he is used to. I have for the last almost twenty years handled the house, cooking, kids, etc. He is not used to homework or giving baths and changing diapers or even handling dinner sometimes. He does it all without a complaint but I can see the stress taking a toll on him too.
I guess I will eventually have to "accept" this. I know God does everything for the good of those who love Him. I am hoping that my faith in Him gets me to a place where I can say " thank you, God, for Chiari. I want to see the good he wants to come out of this. I just don't ever want to let Him down because this has surely caused me to sometimes let my faith falter. I NEVER want to let this affect my relationship with God unless it is to make it stronger.
It takes all kinds to make the World go round. We are lucky to have a common bond here and are able to share our opinions freely. I would hope that we can all learn from eachother, take a walk in each others shoes. Just remember there are way more people in the World that don't get what we are going through or even worse mock us and call us hypocondriacts, or crazy while they roll their eyes and go on with their normal lives. If we can't be here for eachother, for an outlet and for support from fellow sufferers, then who can really be there for us. You may have people that are there for you and say the feel for you, but do they really? I can say that I do feel for you who suffer from the known and unknownand we are all free to speak our minds, but just remember we are all here for the same reason. Compassion for our fellow human beings. I am here for all of you as you have been here for me. I can truely say that YOU undoubtly KNOW what I have, am and will go through (depending at what point of the process you are in). Lets just keep in mind we are here to support and educate eachother and I promise that is my full intentions.
Again with my rambling, but I do truely love my Chiai Family and just wanted to let you all know that.
I am doing well. Learning my body and brain are still not in sync, but there is so much that I want and feel like I should be able to do...and then I pay for it. I just wish that I could get comfortable. I can't stand or sit for too long, because either my back of my head, neck and shoulders start to hurt. I just am hoping it is all part of the recovery process, because other than that my head feels great, but my body just doesn't seem to want to catch up yet. It has probabally been through too much and is just not ready for the energy my brain says it has. How are you doing? I hope you are well. I can say that through all of this I have learned to look at life in a VERY different way. Some people think I am off my rocker with all of my "Peace, Love and Happiness" stuff, but truely I am greatful for all the things that Chiari has given and tought me. I am sure this is just the tip of the iceburg. Take care and know I am here for you if you should need anything. Many Blessings and Love to You,
Crystal lori said:
Crystal:
That was a great post....thank you 100% agree.....How are you feeling??????
Take it easy, listen to your body...rest when you need to...you are doing great it seems!!!
Ya know, you bring up a good point when you said"Peace, Love and Happiness" has brought you...I totally get where you are coming from....I have learned so very much through this journey....have met some wonderful people...found out my life long friends will always be there for me.....meeting new folks , like yourself....without Chiari I would not know you...so yes, I too, think there are positives in everything....I must say though, i have met some real quackie docs during this long journey and some nurses who need to find another career!!!LOL....I have learned to take the good with the bad...my condition does effect my family and I have to try to deal with it one day at a time...My hubby and i had a wonderful talk this am......cleared the air so to speak..b/c Chiari and its effects doesn't only effect the suffers ..it effects those around them.
Recovery does take a lot of time. It took about five months before I woke up one day and felt "well". I was anxious to get on with things, but the body didn't cooperate for quite awhile. I actually found myself wanting to get up and do housework.....can you imagine that! I was bored, but if I was up and about too much, it affected me negatively. I still, nine months later, will sometimes experience some pain if I put stress on my neck and especially my back where the two bones were harvested. I can't stay on the computer for too long or I know I will hurt and be a little stiff. Hopefully, you will have time to do a lot of resting.....that's what the body needs to heal. It has continued to get better for me as time goes on......I hope it will for you too.
Hugs
Shirley
Crystal said:
Lori,
I am doing well. Learning my body and brain are still not in sync, but there is so much that I want and feel like I should be able to do...and then I pay for it. I just wish that I could get comfortable. I can't stand or sit for too long, because either my back of my head, neck and shoulders start to hurt. I just am hoping it is all part of the recovery process, because other than that my head feels great, but my body just doesn't seem to want to catch up yet. It has probabally been through too much and is just not ready for the energy my brain says it has. How are you doing? I hope you are well. I can say that through all of this I have learned to look at life in a VERY different way. Some people think I am off my rocker with all of my "Peace, Love and Happiness" stuff, but truely I am greatful for all the things that Chiari has given and tought me. I am sure this is just the tip of the iceburg. Take care and know I am here for you if you should need anything. Many Blessings and Love to You,
Crystal lori said:
Crystal:
That was a great post....thank you 100% agree.....How are you feeling??????