cindys601
04-28-2008, 10:47 PM
Hello my Ms friends~
Its been a long while since I posted because I have been on a roller coaster ride with my health along with so many others out here.
I began my journey here when dr's thought what I was dealing with was MS. Here I found so many compassionate people who opened their hearts and my eyes to an exceptance of a differant life.
Here I learned that although an illness is a part of all of our lives, we continue on, just on a different path. As my body weakened, you all gave me a sense of peace within myself. When I should have been afraid, you all taught me courage!! You all made me see that stress is something to avoid and there is no room in our lives for it. And I had a cyber world of friends here that you can not find in the "real" world!!
Through all of the stregnth i recieved from you, my friends, I pushed on. When Dr's gave up hope on finding an answer, it was your encouagement that pushed me through it all and in the end, I did find my answers.
It saddens me that I can't be here with all of you in the MS friend club anymore. Though my symptoms are so close to all of yours, my diagnosis is a different one. I have been diagnosed with a brain disorder called Arnold Chiari Malformation. Surgery will be in my near future to alieviate my symptoms but, just like MS, there is no cure.
I hope that my post can remain on this site for others that are searching for answers as well. And I hope that you all continue with the great work you do everyday to help all of us newbies through our fears and the long journey of hopelessness we feel when no one else seems to care.
I have started walking a different path in life because of all of you here. I am letting go of my buisiness and taking care of myself 1st. Never done that in my life but all of your words ring in my ears on a daily basis!! LOL. I'm going to take time to enjoy life, spend time with my family and just smell the roses!!
Life is precious, love is important and happiness is a must!! I have found my peace in my world!! Thanks to all of you!! I am forever grateful!!
I think of you all often and the struggles you all endure on a daily basis. Just remember to hold your heads high because you all need to be proud of all you do to touch the lives of others!!
I hope everones feeling well tonight!!:angel: My angels on my shoulder through all of this!!
Take care~ Cindy
Its been a long while since I posted because I have been on a roller coaster ride with my health along with so many others out here.
I began my journey here when dr's thought what I was dealing with was MS. Here I found so many compassionate people who opened their hearts and my eyes to an exceptance of a differant life.
Here I learned that although an illness is a part of all of our lives, we continue on, just on a different path. As my body weakened, you all gave me a sense of peace within myself. When I should have been afraid, you all taught me courage!! You all made me see that stress is something to avoid and there is no room in our lives for it. And I had a cyber world of friends here that you can not find in the "real" world!!
Through all of the stregnth i recieved from you, my friends, I pushed on. When Dr's gave up hope on finding an answer, it was your encouagement that pushed me through it all and in the end, I did find my answers.
It saddens me that I can't be here with all of you in the MS friend club anymore. Though my symptoms are so close to all of yours, my diagnosis is a different one. I have been diagnosed with a brain disorder called Arnold Chiari Malformation. Surgery will be in my near future to alieviate my symptoms but, just like MS, there is no cure.
I hope that my post can remain on this site for others that are searching for answers as well. And I hope that you all continue with the great work you do everyday to help all of us newbies through our fears and the long journey of hopelessness we feel when no one else seems to care.
I have started walking a different path in life because of all of you here. I am letting go of my buisiness and taking care of myself 1st. Never done that in my life but all of your words ring in my ears on a daily basis!! LOL. I'm going to take time to enjoy life, spend time with my family and just smell the roses!!
Life is precious, love is important and happiness is a must!! I have found my peace in my world!! Thanks to all of you!! I am forever grateful!!
I think of you all often and the struggles you all endure on a daily basis. Just remember to hold your heads high because you all need to be proud of all you do to touch the lives of others!!
I hope everones feeling well tonight!!:angel: My angels on my shoulder through all of this!!
Take care~ Cindy
Sponsor
Nenu
04-28-2008, 11:06 PM
What a great post! Glad you got your answers :) Sorry to hear you'll be having surgery, but I do hope that will alleviate some of the troubles. I'm unfamiliar with your diagnosed illness, so I have some reading to do.
While it's not MS (thankfully), I can honestly say you can still be a part of the family here. We're here for support, and that's what is important, not the final diagnosis. :)
Best of luck to you!
While it's not MS (thankfully), I can honestly say you can still be a part of the family here. We're here for support, and that's what is important, not the final diagnosis. :)
Best of luck to you!
Bearygood
04-28-2008, 11:35 PM
Ah, Cindy!! So good to hear from you and I am glad you finally got answers!! I am a little familiar with Chiari Malformation from other people who were in exactly the same situation as you, who thought perhaps they had MS. FYI, there are some recent posts about Chiari on the Brain & Nervous System board here.
I wish you the best of luck, Cindy. Please let us know how your surgery goes and how you're doing. I'm with Nenu -- even though you don't have MS, you're still part of the "family" here. Don't be a stranger. :)
May the :angel:s be with you!
I wish you the best of luck, Cindy. Please let us know how your surgery goes and how you're doing. I'm with Nenu -- even though you don't have MS, you're still part of the "family" here. Don't be a stranger. :)
May the :angel:s be with you!
MSJayhawk
04-29-2008, 12:02 AM
Though not the diagnosis anyone would hope for, you now have a light at the end of your darkness. How about an honorary MS family membership!
I will remember you in prayers and lift up your surgeon so that their hands might be guided skillfully. May God bless you on the path that you will travel.
I will remember you in prayers and lift up your surgeon so that their hands might be guided skillfully. May God bless you on the path that you will travel.
cindys601
04-29-2008, 12:21 AM
Wow, I have really missed you all so much!! Its been so crazy and hectic trying to put the pieces to the puzzle together that I have been away for so long. But this is one place unlike no other!!
I've had to dedicate my time researching for myself and yes, Msjayhawk, its nice to see the light at the end of the tunnel!! And I'd be honored to be part of your ms "family" LOL
Bearygood, Its great to hear from you once again. I missed sharing your knowledge of so many things and hope to catch up with all the posts I've missed.
Nenu, thanks so much for your warm welcome!!
now that life will be at a much "slower" pace, I look forward to being back here with all the inspiration all of you have to offer!! ~ Cindy
I've had to dedicate my time researching for myself and yes, Msjayhawk, its nice to see the light at the end of the tunnel!! And I'd be honored to be part of your ms "family" LOL
Bearygood, Its great to hear from you once again. I missed sharing your knowledge of so many things and hope to catch up with all the posts I've missed.
Nenu, thanks so much for your warm welcome!!
now that life will be at a much "slower" pace, I look forward to being back here with all the inspiration all of you have to offer!! ~ Cindy
MSNik
04-29-2008, 08:34 AM
Cindy, Cindy, Cindy....long lost friend. Im so happy to hear from you, even if the dx isnt MS, please do drop by and let us know how you are from time to time. Your post was lovely..it made me feel warm and fuzzy and thats hard to do this early in the morning. Thank you for starting out my day as you did.
Its amazing that chiari was the answer....people have asked me numerous times about the disease and although I know the basics, its becoming something I am reading more and more about. Ill have to go check out that board and learn from you and others what I need to know.
Wishing you well with your upcoming surgery- and please, do drop us a line from time to time...your always welcome here, Cindy.
Hugs
Nikki
Its amazing that chiari was the answer....people have asked me numerous times about the disease and although I know the basics, its becoming something I am reading more and more about. Ill have to go check out that board and learn from you and others what I need to know.
Wishing you well with your upcoming surgery- and please, do drop us a line from time to time...your always welcome here, Cindy.
Hugs
Nikki
cindys601
04-29-2008, 06:14 PM
Hi Nikki~
Great stopping by and hearing your always cheerful posts!! Glad your morning started with a good feeling today!! LOL
I hope things are going well for you. Did you change jobs yet? Its been THAT long. I have missed you all so much but just taking time out to read and post has been difficult. I have been on a downhill slide these past few months. When I'm not working, I'm sleeping to get relief. What a life!! LOL
I've told my parents I'm done the end of the month with the buisiness, which is tomorrow. But theyre in denial and my mom thinks if I take some tylenol, I'll feel better. Funny!! Hopefully they'll be able to grasp things soon...;)
Cindy
Great stopping by and hearing your always cheerful posts!! Glad your morning started with a good feeling today!! LOL
I hope things are going well for you. Did you change jobs yet? Its been THAT long. I have missed you all so much but just taking time out to read and post has been difficult. I have been on a downhill slide these past few months. When I'm not working, I'm sleeping to get relief. What a life!! LOL
I've told my parents I'm done the end of the month with the buisiness, which is tomorrow. But theyre in denial and my mom thinks if I take some tylenol, I'll feel better. Funny!! Hopefully they'll be able to grasp things soon...;)
Cindy
Pens'nChalk
04-29-2008, 07:56 PM
Welcome back, Cindy,
Sending prayers for your successful surgery, and prayers of thanks for your kind and generous nature here on the boards and out there in the world. You are a special person who has given as much as anyone. Wishing you a peaceful path, and watching for your continued comments and contributions here ... once family, always family. Bless you:angel:
Sending prayers for your successful surgery, and prayers of thanks for your kind and generous nature here on the boards and out there in the world. You are a special person who has given as much as anyone. Wishing you a peaceful path, and watching for your continued comments and contributions here ... once family, always family. Bless you:angel:
MSNik
04-29-2008, 07:59 PM
Oh Cindy...still? Your mom is in denial? Wow. How is the business going? Youve got to have found help or something by now...are you still trying to do this all on your own? Is your husband/ family helping you at all?
No, I havent changed jobs..just attitudes! Ive really tried hard to not let it get to me. It still does most of the time, but im trying to just accept it and remember its the paycheck which counts...things havent been great at home (nothing new there) and Im trying very hard to keep the peace, which means keeping my job...and my sanity..some things never change.
Ive been fairly healthy overall. Thats whats most important. No real breakdowns on the healthfront..just some old problems which will probably never go away. I have an appt with my Neuro-Opth next week to find out how my ON has healed, or if it has...Neuro appt went well today...so overall, Im hanging in there. I wish the very best for you...and your family. Please do keep in touch. Let us know what the life of Chiari is like..
Nikki
No, I havent changed jobs..just attitudes! Ive really tried hard to not let it get to me. It still does most of the time, but im trying to just accept it and remember its the paycheck which counts...things havent been great at home (nothing new there) and Im trying very hard to keep the peace, which means keeping my job...and my sanity..some things never change.
Ive been fairly healthy overall. Thats whats most important. No real breakdowns on the healthfront..just some old problems which will probably never go away. I have an appt with my Neuro-Opth next week to find out how my ON has healed, or if it has...Neuro appt went well today...so overall, Im hanging in there. I wish the very best for you...and your family. Please do keep in touch. Let us know what the life of Chiari is like..
Nikki
cindys601
04-29-2008, 09:13 PM
Hi Pens'nchalk~
This board is like no other out there and I've visited many in my search for answers and a diognosis. Here, there is such a connection between all of you and I have never been anywhere in my life where I've fealt the compassion and friendship that everyone here shares. It definately feels like "family"!! Thanks so much for your kind words and the welcome back!!
And Nikki~
Somethings just never change in life, thats for sure. But I do believe we are the ones that accept and let that happen. I am learning to think of ME 1st and that is definately not in my nature but for the present, its a must!!
I've told my parents its over with the buisiness but I'm still there and its rough going. My wonderful hubby helps on his days off and my kids too but my parents are getting so comfortable with the kids helping, my dad said when I'm gone, he'll pay my daughter $10 to serve supper for all the guys. Not that its hard work but to be tied down 7 days a week, 365 days a year isn't fair to expect a 16 year old to be tied down to that kind of commitment. So I've kept the kids away for that reason, though I desperately need they're help!!
I feel bad for my mom because if you remember, her health isn't good and she has dementia but my dad isn't willing to give up his lucritive income and she is telling me daily she doesn't want to be stuck with this. But she'll do it for him. I told her that I feel bad for her but I can't let her be my 1st concern. I have to look out for myself. And I'm in a rough way. So I've been networking to find someone to replace me. The guilt monkey is still on my back so hopefully, if I can find outside help, I'll feal better about all of this.
And for you, Nikki, i'm so sorry to hear things haven't changed so much on the homefront. Dealing with an illness and the worry of making a paycheck is just alot to endure!! Did you get a chance to go on vacation this year? Taking time to relax is a must. Make sure you do that for yourself!!
Its great to hear your health is good and no major relapses!! Thats wonderful news.
I'm waiting to scedule my 1st surgery, to dether my spinal cord. Its pulling my brain downward and I have very little CFS flow behind my brainstem. Hopefully this will alieviate some of the lower extremity issues. But, its not a cure and I've excepted that. Just taking one step at a time. MS and Chiari are so similiar in alot of ways. Not only are the symptoms alot alike but its all about changing your lifestyle and adapting to new ways. Learning to adapt and overcome...
I'll let you know my progress along the way.
Take care
Cindy
This board is like no other out there and I've visited many in my search for answers and a diognosis. Here, there is such a connection between all of you and I have never been anywhere in my life where I've fealt the compassion and friendship that everyone here shares. It definately feels like "family"!! Thanks so much for your kind words and the welcome back!!
And Nikki~
Somethings just never change in life, thats for sure. But I do believe we are the ones that accept and let that happen. I am learning to think of ME 1st and that is definately not in my nature but for the present, its a must!!
I've told my parents its over with the buisiness but I'm still there and its rough going. My wonderful hubby helps on his days off and my kids too but my parents are getting so comfortable with the kids helping, my dad said when I'm gone, he'll pay my daughter $10 to serve supper for all the guys. Not that its hard work but to be tied down 7 days a week, 365 days a year isn't fair to expect a 16 year old to be tied down to that kind of commitment. So I've kept the kids away for that reason, though I desperately need they're help!!
I feel bad for my mom because if you remember, her health isn't good and she has dementia but my dad isn't willing to give up his lucritive income and she is telling me daily she doesn't want to be stuck with this. But she'll do it for him. I told her that I feel bad for her but I can't let her be my 1st concern. I have to look out for myself. And I'm in a rough way. So I've been networking to find someone to replace me. The guilt monkey is still on my back so hopefully, if I can find outside help, I'll feal better about all of this.
And for you, Nikki, i'm so sorry to hear things haven't changed so much on the homefront. Dealing with an illness and the worry of making a paycheck is just alot to endure!! Did you get a chance to go on vacation this year? Taking time to relax is a must. Make sure you do that for yourself!!
Its great to hear your health is good and no major relapses!! Thats wonderful news.
I'm waiting to scedule my 1st surgery, to dether my spinal cord. Its pulling my brain downward and I have very little CFS flow behind my brainstem. Hopefully this will alieviate some of the lower extremity issues. But, its not a cure and I've excepted that. Just taking one step at a time. MS and Chiari are so similiar in alot of ways. Not only are the symptoms alot alike but its all about changing your lifestyle and adapting to new ways. Learning to adapt and overcome...
I'll let you know my progress along the way.
Take care
Cindy
MSNik
04-29-2008, 10:26 PM
Prayers to you brave lady....please DO keep us posted on your progress. You have alot of friends here, Cindy..and youve been missed.
Yes, I did manage to sneak in a week in Mexico again this year- just recently, about 3 weeks ago, we returned. IT was okay, but honestly, traveling is alot of headaches..next year I think Ill stay home, shut off the phones and keep the blinds closed! I really need to catch up with old friends and people I havent had time to see in the past 2 years while dealing with so much health stuff....Im sorry to hear that the businesss is still tying you down so much. Those vets dont know how good they have it...neither does your mom. Bless you, Cindy, for all you do. Youre amazing.
big hugs,
Nikki
Yes, I did manage to sneak in a week in Mexico again this year- just recently, about 3 weeks ago, we returned. IT was okay, but honestly, traveling is alot of headaches..next year I think Ill stay home, shut off the phones and keep the blinds closed! I really need to catch up with old friends and people I havent had time to see in the past 2 years while dealing with so much health stuff....Im sorry to hear that the businesss is still tying you down so much. Those vets dont know how good they have it...neither does your mom. Bless you, Cindy, for all you do. Youre amazing.
big hugs,
Nikki
Nenu
04-29-2008, 10:29 PM
Agree Nikki. Even though it's not MS, since a lot of us here are pretty 'health conscious', we're equally as interested in hearing about your progress and what your procedure and recovery will involve. And of course about your daily life :)
Bearygood
04-29-2008, 10:36 PM
Cindy, I know this isn't easy but you sound in a good, calm place and for that I'm glad. You'd BETTER not be a stranger! I really hope you keep us posted on how you're doing! You've been a complete joy to have on here. :)