Sorry it's been so long

Hey all-

As I said sorry I haven't been on - I really haven't been to too many of my sites since my surgery - I am 6 mos post-op and I am STILL recovering. I do talk to a lady who has had the surgery as well as a host of other surgeries revolving around Chiari and she always is reminding me this is my "new normal' - but at times it's hard to believe I would actually get something that would leave me like this. Added to that, is the frustration that no one really knows about it, and all the mis-information, and the fact people expect you should be back to normal after having the surgery. I have to admit that I myself thought I would be back to some sort of normalcy, even after reading so many stories, and I actually thought people were just trying to get attention or just wanted to be on pills or disability. Maybe this is what I get.

Anyway, I am trying to at least learn how to live with the way I am now, learning that I will not have the energy I once had, that having a headache daily is just the way it is. I am thankful that I at least do have a pain doctor, but it is a slippery slope as I once had a pain pill addiction. Not that I take it to get high - I don't - my slippery slope is trying to fight my pain. Isn't that just a cruel twist? And even when I do take extra - my pain is still there - and I wonder if I will ever see a pain-free day. Most of the time my lack of energy comes from being in pain and the constant battle with my body.

There is a post on here from a lady saying there is no true Chiari expert - I had my surgery done by an "expert" - he was done with me as soon as my surgery was over.

My story is different in the fact I HAD to get the surgery as my brain was pushing against the bone so much it almost killed me one night laying in bed - so at least I am not dealing with the let down of not having all of my symptoms relieved by the surgery. I am just glad to be alive and not paralyzed and as the pain doctor put it.

I am SO SO sorry to the ones who are going through this with no support -- my family fully expects me to be back the way I was, but my husband understands and he supports me (ususally - at times he does get frustrated - rightfully- with the way I can't do things anymore) but, he isn't telling me I am just making it up or whatever. To those of you that get no support - you are even stronger than the rest of us for fighting this battle alone - and my heart goes out to you.

There really wasn't a point to this post other than to talk LOL and to show I wasn't one who gets the surgery and just quits coming back - I just haven't been able to. There are some positives in my life - my honey and I have been together for 13 years - and the way he took care of me made me see I did want to marry him, so we will be getting married on our 14 yr anniversary of meeting. Oh so that's another reason - usually when I am on the computer I am looking at wedding stuff :) - another thing is I realized I wanted to go back to school, being able to think clearly made me WANT to learn - I took being able to comprehend things for granted, then when I couldn't anymore it was very heartbreaking. I am going to become an Esthetician, and yea that's not a huge undertaking, it is my passion, and I have to do what I love. Another thing is the first time I had a facial I remember thinking that kind of relaxation and feeling good shouldn't only be for people with money, so I hope to one day be ble to do services for people that really deserve it with out accepting payment.

To those of you just starting this journey, it is a new way of living, but it can be done. I believe if you can let go of being the way you were, you can start to learn of to live with how you are.

Good to be back - and it's nice to see so many new people!

Carla- Thank you for your response - I appreciate hearing from people who are so long out from surgery - although it IS hard to accept not being the way we were, it helps to know I am not being a big wimp about all of this. And too people like you who have been through SO much - I am so sorry - my herniation was only 15 - it jumed though from 11 to 15 in about 6 mos - and I only had C-1 removed -I guess I had it when I was young ( I have scoliosis) but at the time they chose not to do anything about it and also I had a shunt put in to drain a cyst that was on my spinal cord, and also correct the scoliosis. I guess I thought I had left it all behind me then all of a sudden one day my head started hurting and never stopped - but I do thank you for letting me see like I said I am not a big baby. Thank you for telling me about your twitching - I do that now and it’s so weird! I NEVER did it beofre surgery - have you ever gotten an explanation for why it happens? I understand the nerve pain - and I hear you on the stomach problems - even though I am only on those two medications as I said in the past I took alot of pills and I used to drink stupid amounts of 150proof alcohol so my stomach now just really isn’t tolerating it. I do thank you for sharing with me and I look forward to talking with you too! Prayers for a comfortable night )