Well its almost time!!! Check in at 5:30 Surgery at 7:30am. Cant sleep just keep thinking about it all. Still a little nervous but much better than it has been. Really missing my babies tonight!!!
And thank you to everyone for the prayers and being there for me through all this!!
Special Thank you to:
Cory, Kenna, Colby & Kyle For being the best kids a mother could ask for yall are so strong and understanding!! I LOVE YOU GUYS!!!!
Kurt, the best hubby in the world you are my rock you have been awesome through all this when i was down we prayed, When i was bored you kept me company, and through all this pain you know just how to comfort me, You always know how to lift me up and I LOVE YOU SOOOO MUCH!!
Charlyn, You are the best mom ever thank you for not giving up on me and helping me through all this even when i would get so frustrated you stayed calm and got me the help i needed, I cant thank you enough for everything you have done!!
Dad thanks for listing to me and praying with me I Love You!!!
To my awesome brothers, sisters, in -Laws and friends, Thank yall for everything from helping with the kids, the meals, the clean house and just being there to listen, I know you all have taken time from your own family and for all this i owe yall the world!! I Love You All Greatly!!
Sorry is i didn't name you directly but my list is so long and and I'm so grateful to have such wonderful support, Because with out all of you i would have been lost. oxox
Goodnight i will keep everyone posted!!!
~*Chelsea*~
Monday, August 15, 2011
Monday, August 8, 2011
One Week Till Surgery!!!
Ok so one week left nerves have settled and feeling pretty good about the surgery now. Ready for the 16th to get here and i can be on my way to feeling somewhat normal again. Kids are doing good and trying to spend time with them befor they head out on there trips with family.
A Chiarians Creed
Cool video
http://www.youtube.com/watch?v=hRPrMsAVoLQ
A Chiarians Creed
I promise to accept the fact that I have Chiari Malformation, a neurological disorder which will limit my abilities in my every day life.
While I will always have Chiari, some days will be good, and some days will be bad.I will be thankful for the good days and try to make the most of them. When I am having a bad day, I will try to remember that most likely it will not last.
When I'm having a bad day, I will listen to my body, and get the rest I need. I will let my family know that I am not feeling well, because they can not read my mind.
I will not feel guilty about resting, because I will eventually begin to feel better, and in the long run, it will also benefit my family. They will not become malnourished if they eat peanut butter and jelly sandwiches for dinner.
I will not feel guilty or worry about the work that is not getting done while I am resting. The world will not fall apart without me, even though it looks like it already has.
I will not let anyone else make me feel guilty for taking out for myself. They will never understand exactly what I am experiencing, the pain that I feel, the exhaustion that I feel.
They will never understand the fear that I feel when my symptoms creep up on me, and land me flat on my back.
I promise not to feel sorry for myself when I am feeling bad because there are alot of people out there who are in worse shape than I am. I will not be sorry for what I don't have, but be thankful for what I do have.
I promise to learn a lesson from my illness, which is not to take life for granted. I will try to enjoy every moment that was given to me, and be thankful for the times that I can smile and laugh.
I will try to help others who also suffer from my condition. There are many confused and frieghtened people who need to hear comforting words from someone who has been there. There are many people who need me to take his or her hand, and be pointed the right direction.
Lastly, I will not ask, "Why Me?" While Chiari has weakened my body, it has strengthened my heart, my soul, and my spirit.
Shiela Reilly
Cool video
http://www.youtube.com/watch?v=hRPrMsAVoLQ
Sunday, August 7, 2011
Whats Been Going On?
Whats been going on? Well its been a crazy two weeks I've had my bad days and my ok days. And always looking for a great day! And the closes i got to that was this weekend when family was here even though i was hurting pretty bad and it was loud at times it was still nice to see everyone. And so now I'm just ready for the surgery to be done and over with yet i have been very nervous about it and have even had some crazy thoughts about it. I have gone as far as voicing my opinion on what i want for my children. And yes i know this sounds very crazy and NO i have not lost it, My husband and I have prayed about it and i know deep down everything is going to be ok because the lord is with me. But i have had alot of time to lay here and think about things which i come to realize is not a good thing. And like i have told my family we all take things for granite, me being the 1st to admit it I never once have stopped to think about something like this even all that my family has been through we have always moved forward and never looked back. But i come to realize in all of this we never know when, where, or what time the lord is going to call us home. My family has been soooo supportive of me talking about it and they have all been great listeners. With this being said since i have talked to them I'm better now and don't even think about it much.
So now its about a week away till surgery and all my kiddos have made it home from there vacations with family I'm going to spend lots of time with them and slowly work on getting them packed back up for there next adventure.
A special thanks to all my family for all the help and support through all this and keeping my kids busy and occupied love you all and hope you have a good week.
~*Chelsea*~
So now its about a week away till surgery and all my kiddos have made it home from there vacations with family I'm going to spend lots of time with them and slowly work on getting them packed back up for there next adventure.
A special thanks to all my family for all the help and support through all this and keeping my kids busy and occupied love you all and hope you have a good week.
~*Chelsea*~
Friday, July 22, 2011
When it all started
Chiari is a life changing illness!!!
I have had headaches for over a year now but nothing i couldn't handle. My life changed in May when i started getting a headache like no other, then started vomiting , my vision got blurry in my left eye, got dizzy and had no clue what the heck was wrong with me. Few days passed with my symptoms only getting worse at this point the left side of my body was numb. After 2 ER visits and being admitted to the hospital, Dr. searching for brain tumors and aneurysms still no answers. Went to a migraine Dr. he gave me a handful of meds that did not work. ( By this point I'm beginning to think i was crazy) Next i go to a neurologist he says he has no idea whats wrong with me but he will try to figure it out he ran test looking for brain tumors and aneurysms again,( Now not only do i feel like I'm going crazy But i feel so alone nobody truly understands how i feel) And there it was CHIARI MALFORMATION TYPE 1. Neither of us knowing alot about it, I agreed to do a occipital nerve block, which may help for some people but for me it only made thing worse. Next i went to a neurosurgeon that specializes in cm1 he was awesome FINALLY someone who knows and understands how i feel!! But he believes there is more than that wrong, Oh no here we go again more test, So he sends me to another Dr. to check for a Pseudotumor cerebri (SOO-doh-too-mur SER-uh-bry) I did the test for this and was cleared i don't have it. So then i go back to my NS and he goes over everything again and says that i have cm1 with the start of a syrinx, and possibly Low-pressure hydrocephalus. REALLY!?!? What the heck just happened? Is he serious? I didn't come back for more bad and crazy news i just wanted to know how to get better and get my life back ( at this point I'm thinking hes not so awesome) So then i asked what happen why all of this now why only a few days after i turn 30 did my awesome world go to poop, Not many answers cause they don't know a whole lot about about it beside what they believe is that i have had this all my life and that my symptoms started because my brain settled. WOW!! Not really the answer i was looking for. So now your probably wondering why i have not hit the door running from this guy and the answer is 1. If you are a chiarian you would know we don't run any where because it hurts to bad and 2. In Tx we don't have many doctors around here that know much about this, and its not that i didn't believe him cause i did and he explained it very well its that i didn't want to here all that, it was alot to take in at the time. So now I am scheduled for Aug.16 to have Brain surgery (suboccipital craniectomy with c1-c2 laminectomy chiari decompression) and at that time they will check for Low-pressure hydrocephalus and if i have it they will put in a shunt. (more news i didn't want to hear). So before long i will be a zipperhead and not looking forward to it, just looking forward to living life again outside my room.
Before i end for the night i do want to explain the rest of my life since all this started just so other people out there with chiari know they are not alone because there is not alot of info, And no not everyone is going to have the same symptoms or all of them and no i have not dealt with it for years like alot of people but these few months have seemed like a life time to me. Since May i have lived in my bed with horrible head pain mine is severe pressure, ( sneezing, bending over and straining only make it all worse) i am dizzy all the time, my left eye goes blurry and i have even lose my sight at times, First i started going numb on my left side and recently my right side started, I have a horrible pain in my neck and shoulders, When my hands and feet aren't numb it feels like huge ants eating my flesh away. Noise bothers me and if more than one person is talking to me i cant understand them cause it all runs together and sounds like they are all under water talking, and in a house with 5 kids its pretty crazy hearing this sound all the time. I have managed to get this far with my awesome family and friends by my side i truly owe them the world. And thanks to EVERYONE for all the prayers because even though we don't understand it GOD does have a purpose and a plan for us and i truly believe this.
I have had headaches for over a year now but nothing i couldn't handle. My life changed in May when i started getting a headache like no other, then started vomiting , my vision got blurry in my left eye, got dizzy and had no clue what the heck was wrong with me. Few days passed with my symptoms only getting worse at this point the left side of my body was numb. After 2 ER visits and being admitted to the hospital, Dr. searching for brain tumors and aneurysms still no answers. Went to a migraine Dr. he gave me a handful of meds that did not work. ( By this point I'm beginning to think i was crazy) Next i go to a neurologist he says he has no idea whats wrong with me but he will try to figure it out he ran test looking for brain tumors and aneurysms again,( Now not only do i feel like I'm going crazy But i feel so alone nobody truly understands how i feel) And there it was CHIARI MALFORMATION TYPE 1. Neither of us knowing alot about it, I agreed to do a occipital nerve block, which may help for some people but for me it only made thing worse. Next i went to a neurosurgeon that specializes in cm1 he was awesome FINALLY someone who knows and understands how i feel!! But he believes there is more than that wrong, Oh no here we go again more test, So he sends me to another Dr. to check for a Pseudotumor cerebri (SOO-doh-too-mur SER-uh-bry) I did the test for this and was cleared i don't have it. So then i go back to my NS and he goes over everything again and says that i have cm1 with the start of a syrinx, and possibly Low-pressure hydrocephalus. REALLY!?!? What the heck just happened? Is he serious? I didn't come back for more bad and crazy news i just wanted to know how to get better and get my life back ( at this point I'm thinking hes not so awesome) So then i asked what happen why all of this now why only a few days after i turn 30 did my awesome world go to poop, Not many answers cause they don't know a whole lot about about it beside what they believe is that i have had this all my life and that my symptoms started because my brain settled. WOW!! Not really the answer i was looking for. So now your probably wondering why i have not hit the door running from this guy and the answer is 1. If you are a chiarian you would know we don't run any where because it hurts to bad and 2. In Tx we don't have many doctors around here that know much about this, and its not that i didn't believe him cause i did and he explained it very well its that i didn't want to here all that, it was alot to take in at the time. So now I am scheduled for Aug.16 to have Brain surgery (suboccipital craniectomy with c1-c2 laminectomy chiari decompression) and at that time they will check for Low-pressure hydrocephalus and if i have it they will put in a shunt. (more news i didn't want to hear). So before long i will be a zipperhead and not looking forward to it, just looking forward to living life again outside my room.
Before i end for the night i do want to explain the rest of my life since all this started just so other people out there with chiari know they are not alone because there is not alot of info, And no not everyone is going to have the same symptoms or all of them and no i have not dealt with it for years like alot of people but these few months have seemed like a life time to me. Since May i have lived in my bed with horrible head pain mine is severe pressure, ( sneezing, bending over and straining only make it all worse) i am dizzy all the time, my left eye goes blurry and i have even lose my sight at times, First i started going numb on my left side and recently my right side started, I have a horrible pain in my neck and shoulders, When my hands and feet aren't numb it feels like huge ants eating my flesh away. Noise bothers me and if more than one person is talking to me i cant understand them cause it all runs together and sounds like they are all under water talking, and in a house with 5 kids its pretty crazy hearing this sound all the time. I have managed to get this far with my awesome family and friends by my side i truly owe them the world. And thanks to EVERYONE for all the prayers because even though we don't understand it GOD does have a purpose and a plan for us and i truly believe this.
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