When things go wrong, as they sometimes will,
When the road you're trudging seems all uphill,
When the funds are low, and the debts are high,
And you want to smile, but you have to sigh,
When caring is pressing you down a bit,
Rest if you must, but don't you quit.
Life is strange with it's twists and turns,
As everyone of us sometimes learns,
And many a failure turns about,
When he might have won had he stuck it out;
Don't give up though the pace seems slow,
you may succeed with another go.
Success is failure turned inside out,
The silver tint of the cloud of doubt,
And you can never tell how close you are,
It may be near when it seems so far;
So stick to the fight when you're hardest hit,
It's when things seem worst
That you must not quit.
Author unknown
Monday, August 31, 2009
Friday, August 28, 2009
WAKE UP CALL
I really do trust people it has been one of my many downfalls.
Because I have real faith in mankind. I am also a Virgo, that should say it all.
However, saying this I also believe that everyone else cares as much as I do.
pphhhhhtttttt, not. Maybe about themselves. I was reminded of this lately as my
neurosurgeon's office failed to mention to me, that they had delayed my brain/decompression surgery. What?!!!! They didn't even bother to let me know, a few days bwfore my surgery,I called to see if there were any blood tests I needed to get before hand. The receptionist is like surgery? for what? I wanted to slap someone.!!!! I said when was I going to be told? My family took off work to be there!
I guess I always try to put myself in another person's shoes. But not everyone does that, but common sense would give a phone call to the patient. Also you don't make a patient wait for 3 1/2 weeks then tell them a few days before. Now my pcp doc who really is great guy started me on Diamox for the pressure in my head and the swelling of my tissues today.My new surgery date will be on september 21, at least that's what they said this time. But I AM STILL HERE and we will see what happens!
Have any of you gone through anything like this? want to share?
lol
Suzanne
Because I have real faith in mankind. I am also a Virgo, that should say it all.
However, saying this I also believe that everyone else cares as much as I do.
pphhhhhtttttt, not. Maybe about themselves. I was reminded of this lately as my
neurosurgeon's office failed to mention to me, that they had delayed my brain/decompression surgery. What?!!!! They didn't even bother to let me know, a few days bwfore my surgery,I called to see if there were any blood tests I needed to get before hand. The receptionist is like surgery? for what? I wanted to slap someone.!!!! I said when was I going to be told? My family took off work to be there!
I guess I always try to put myself in another person's shoes. But not everyone does that, but common sense would give a phone call to the patient. Also you don't make a patient wait for 3 1/2 weeks then tell them a few days before. Now my pcp doc who really is great guy started me on Diamox for the pressure in my head and the swelling of my tissues today.My new surgery date will be on september 21, at least that's what they said this time. But I AM STILL HERE and we will see what happens!
Have any of you gone through anything like this? want to share?
lol
Suzanne
Wednesday, August 19, 2009
joyfulme39@aol.com
joyfulme39@aol.comHi, I have been going trhought the same thing, but I kept falling to the left, they told me it was related to my chiari. SO I hope I am not putting my faith in something that might not be fixed after surgery, I tend to think it will
countdown to surgery
As the day get closer I have to wonder am I going to be able to handle this as well as most of my fellow bloggers, on this site as well as other sites I get on to. One teally good site is medhelp as they have really good information ans have both patients and professionals to guide you,I am scared as each day gets closer and yet a strange calmness has come over me that I have to attribute to my friends and they knot who they are. I have 7 days to surgery.Can I do this? Do I really have any choice? The tonsils are pressing on my spinal cord and blocking the flow.
Suzanne
Suzanne
Tuesday, August 18, 2009
chiari 1 malformation
Definition of Chiari
A serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine, and disrupting the normal flow of cerebrospinal fluid (csf) aslo known as arnold chiari, ACM, ACM1, ACM11,CM
About 1 in 1000 people are affected by this disease.
Symptoms include:Many different symptoms, and effects people different. Most common is severe headaches, made worse by couphing, sneezing etc. other symptoms include balance problems, vision problems, autonomic dysfuction, also size of malformation,
eventually causing paralysis if not taken care of ...depending on the size of the malformation,etc.Headache seem to start in the back of head.Balance issues can occur, vision disturbances, sensitivity of light,trouble gagging, ar choking.
Diagnosis includes mri's, etc, they can develop a fuid filled cyst in the spinal cord, this is known as syringomyelia. Treatment depends on many things the sixe of the chiari, any other symptoms,How severe the symptoms are, etc. Decompression surgery is performed by a neurosurgeon.The goal is to make room for around the cerebellum by removing part of theskull and spine. We are a long way to finding a cure and research is being done everyday and funding for this is limited, more and more people are being diagnosed with this crippling disorder, young and old and inbetween. You can donate money or your time to help fight this battle with us .
Bills are trying to get passed in humane treatment of the critically ill.
A serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine, and disrupting the normal flow of cerebrospinal fluid (csf) aslo known as arnold chiari, ACM, ACM1, ACM11,CM
About 1 in 1000 people are affected by this disease.
Symptoms include:Many different symptoms, and effects people different. Most common is severe headaches, made worse by couphing, sneezing etc. other symptoms include balance problems, vision problems, autonomic dysfuction, also size of malformation,
eventually causing paralysis if not taken care of ...depending on the size of the malformation,etc.Headache seem to start in the back of head.Balance issues can occur, vision disturbances, sensitivity of light,trouble gagging, ar choking.
Diagnosis includes mri's, etc, they can develop a fuid filled cyst in the spinal cord, this is known as syringomyelia. Treatment depends on many things the sixe of the chiari, any other symptoms,How severe the symptoms are, etc. Decompression surgery is performed by a neurosurgeon.The goal is to make room for around the cerebellum by removing part of theskull and spine. We are a long way to finding a cure and research is being done everyday and funding for this is limited, more and more people are being diagnosed with this crippling disorder, young and old and inbetween. You can donate money or your time to help fight this battle with us .
Bills are trying to get passed in humane treatment of the critically ill.
Monday, August 10, 2009
LIST OF WEBSITES TO HELP YOU GET ANSWERS
chiariconnectioninternational.com
utahchiariconnection.com
medhelp.com then got to chiari join this community of discussions,etc
I am sure there are quite a few websites, let us know of them only if they are helpful and full of good information we can rely on, many of these are both medical professionals, as well as chiarians, that can tell from there own experiences, they may not be the same as your experiences, but helpful just the same.Please feel free to contact me anytime I would love to listen.I will take the time to tell you about some of my experiences as soon as I get to it.All this is new to me too.
Suzanne
I will be adding to the list of websites that I have found to be helpful, soon.
utahchiariconnection.com
medhelp.com then got to chiari join this community of discussions,etc
I am sure there are quite a few websites, let us know of them only if they are helpful and full of good information we can rely on, many of these are both medical professionals, as well as chiarians, that can tell from there own experiences, they may not be the same as your experiences, but helpful just the same.Please feel free to contact me anytime I would love to listen.I will take the time to tell you about some of my experiences as soon as I get to it.All this is new to me too.
Suzanne
I will be adding to the list of websites that I have found to be helpful, soon.
Don't let chiari get you down/Let others help/help others
There are many people who would like to help those who have chiari 1 malformation. We stick together, and would like to start support group in utah, area, we want to have a chairiwalk in september, also there is a very wonderful lady who is trying to get some laws passed for those who can't seem to get help with medical care ,Kelly.If you have chiari or a loved one with this disease young or old, please join our cause. Sometimes even just talking with someone who has been through some of the same symptoms, or feelings,this can help you tremendously , I would know,this chiari site has helped me so much. also a few other sites to give you as much information as to what you can expect. These few tools in your hand can prepare you, yes it's scary and some of the information may not pertain to you, but do something anything to help you, your family and even others, helps you at the same time.
Much Love,
Suzanne
Much Love,
Suzanne
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