I'm sorry I have brain damage. You have to find humor where there is none.I want to thank everyone for talking about their condition on here Im up till 3 or 4 in the am reading post. It is helping me prepare for my operation.I'm packed for a 5 day stay.I put all the stuff that was suggested in there.Especially the eye cover. I dont want people watching me sleep.I have a painting to do but have pushed it aside and am pulling weeds in the yard.I am at 115 now and not much mussel left so that is how I am manageing to keep them.My gardening and list of daily chores. I can hardly walk talk and every move I make is painful 24-7 .I will try anything for relief at this point.Is anyone eles expierianceing the Oboma care 21 day wait for approvals that are So far this has been the caseover1000 $$$ from there insureance companys ? Or are you getting right in.So far this has been the case.
Quite literally - I FEEL YOUR PAIN! This 24/7 headache that is unstopped by any amount of drugs - that's gotta go! But I totally agree with you about the humor... you have to laugh, even though it hurts.
I feel especially sorry for my fellow Chiarians living in America, though. Its not enough that you all have to deal with this condition but then to read about some of the run around you all go through with insurance companies and healthcare reforms... must be a nightmare. I live in Canada. I'm not bragging, we have our own headaches with medicare, and procedures and surgery tend to take a little longer to get. But I do feel that we have it a little easier and cheaper.
Where did you find suggestions for what to pack for your hospital stay? I'm waiting for my surgery date, but it should be coming up soon. A heads up for preparation sake would be awesome!
I was reading through a disscussion somewhere in there.I never really thought about it till I read it.LOL It got me to packing. I cant rember where in there or what all it said.But it did say you could have you own PJs if it had a button up front and sweats. I was able to treat myself to a new set of jo boxer PJs with a pajama bottom.It said it was because you have to cheak out with PT to see if you can get around on yor own. Im on medicare and I guess it takes longer for approvals.21 days for my app 21days till my mri approval now Im waiting for the operation approval.I was only wondering if I would wait 21 days for that. We were at a rest stop walking the dog.There was a guy selling coffee there.I started converseing with him hoping I wouldnt mess up. I was laughing the hole while thinking,Gosh!" I hurt especially to laugh". I told him I was losing my mind.He said oh so am I and showed me this figure wearing a dunce hat holding a sign saying I'm losing my mind So buy this time the tears were rolling I said so am I they are going to pop my cap and give my brain more room.Then sit it in a sling and sew it up He was just staring at me like maybe I had gone nuts and was glad to see I was being accompanyied by someone.He really would have flipped if I got in an drove.I would have but didnt want to have a migraine from all the laughing .I told him I have a Chiari 1 malformation.I was born with it.I told him to have a nice day. He said well its good that you can laugh about it .I said what else can you do???You all have a good evening. You think I jump around here in conversation. You should try talking to me.Ill say stuff out of know where and no tellin whats going to come out Boy!!I sure do need help. It looks like it might get a whole hell of alot worse befor it gets better.Once your cut thats it.You get to live with the results I know I have been there several times I'm living with another desise call Adhisive Arachnoiditis.That is another reason why my surgen waited so long She thought it was that too.More so than the Chiari. The Chiari progressed beyond the arachnoiditis. LOL No!!!Its not battel star galactica It me batteling my deaseses.
DizzyE said:
Quite literally - I FEEL YOUR PAIN! This 24/7 headache that is unstopped by any amount of drugs - that's gotta go! But I totally agree with you about the humor... you have to laugh, even though it hurts.
I feel especially sorry for my fellow Chiarians living in America, though. Its not enough that you all have to deal with this condition but then to read about some of the run around you all go through with insurance companies and healthcare reforms... must be a nightmare. I live in Canada. I'm not bragging, we have our own headaches with medicare, and procedures and surgery tend to take a little longer to get. But I do feel that we have it a little easier and cheaper.
Where did you find suggestions for what to pack for your hospital stay? I'm waiting for my surgery date, but it should be coming up soon. A heads up for preparation sake would be awesome!
Hi..
When is your surgery????
I have been waiting since October for the insurance to approve the surgery. I finally have a date... May 22 !!! I am ready and scared at the same time. I had the VP shunt placement in 2005 but, this is a whole different ballgame!!!