What i hate and what i am thankful for this holiday season (and everyday)

General General TN & GPN (Old Site)
1


I hate that I will lose my mother very soon, I am thankful for the lifetime of love, nurturing, advice, teaching, comforting, friend, positive attitude, looking out for the underdog, strength, and being one of my heroes. I am thankful for the doctors, nurses, and home care and hospice angels that have helped her (and her family) in her journey.
I mention my mother not to get sympathy for myself, but to help explain where my attitude and thought process originates from.


I HATE THAT I HAVE TN!
I am thankful for the medical help, modern, ancient, and alternative means that has given me some relief.


I HATE THAT I HAVE TN! The “invisible disease”.
I am thankful for my friends and family that supports me, sometimes being overprotective because they saw me when TN was attacking at it’s worse.


I HATE THAT I HAVE TN!
I am thankful that the beast has been beaten back for the most part, and I can function somewhat “normally” in front of people that don’t know me.


I HATE THAT I HAVE TN!
I am thankful for this website that has given myself and so many others both support and education. I am thankful for the members that have tirelessly given of themselves to help others. I am thankful that I have been able to help welcome new members to this site.


I HATE THAT I HAVE TN! That there is no miracle cure.
I am thankful that some of us find relief whether it is from surgery, medicine or other means even though we might not understand how it works.


I HATE THAT I HAVE TN! That it has fundamentally changed my life.
I am thankful that it has made me realize that even changed my life can be positive.


I HATE THAT I HAVE TN! That it takes me a lot longer to do things than before.
I am thankful that I can still do things.

I HATE THAT I HAVE TN! That I have lost my short term memory and comprehension.

I am thankful for the patience that my family and friends have when I have a hard time with the memory and comprehesion problems.

I HATE THAT I HAVE TN!

I am thankful for our troops both past and present and pray that the ones in harm’s way come home safe and whole both mentally and physically.


So this brings me back to why I mentioned my mother. She instilled in me that there is always a light at the end of the tunnel, even though sometimes it is hard to see. When I am having a pity party I can hear her tell me to be positive whether she is around me or not, I have a positive attitude because of her and it is good medicine. It has helped me battle this monster and all the adversaries in life.

If anyone would like to add to the list I would love to have them contribute.
HAPPY HOLIDAYS
Scott

2

Thank You for sharing your thoughts with us Scott. What a wonderful Mum you have and you sound like a wonderful Son. God Bless your Mum xxxx

3

Great thread Scott.
I hate that I have TN, but just as Scott says, I am thankful for a wonderful ( late) father who also instilled in me that there are two states to think about. Either side of the ground, and that it is very important to be THANKFUL that I am on the sunny side of it!! There is so much to be happy about, therefore I try to concentrate on those.

4

Wise woman your Mother, bless her and you through this difficult time.

To honor your Mom and respect the spirit of your thread;



I HATE THAT I HAVE TN! I am exhausted , pain to varying degrees for 4 mths straight.



I am grateful for the caring, patience and loving kindness of my husband and children.

I am so incredibly thankful for the gift of HOPE provided by a neurosurgeon willing to perform an MVD on me in 2013.





(((Scott))) & ((((Scott’s Mom)))), Mimi xx

5

It's tough to face losing a parent. It sounds like your mother was a gem.

Stress can make everything go crazy, so watch yourself carefully and be proactive if you start having breakthrough pain. Also, since it sounds like you have the same high-quality short term memory that I do right now, make sure that you actually take your meds on schedule because losing a loved one doesn't tend to improve recall.

My father-in-law literally fell over dead on top of me in October and we wandered around in a daze for weeks. I started a flareup (possibly from the stress, I'm not sure, but the timing was impeccable) and completely forgot how to start medicating myself. Then I would forget when I had taken a pill and end up taking two or three doses. If you don't have one already, a pill keeper to separate the doses might be a good investment.

I'll try to add one to the list:

I hate that I have TN

I am thankful that I have TN because it's made me stronger and more resilient than I was before (but now that I've accomplished that I wouldn't complain if it went away!)

6

Thank you for your kind words, I truly appreciate them.

elstep said:

Thank You for sharing your thoughts with us Scott. What a wonderful Mum you have and you sound like a wonderful Son. God Bless your Mum xxxx

7

Thanks Jackie.

I always knew you had a great influence in your life by the kind words and way you treat others on this site.

Scott

Jackie said:

Great thread Scott.
I hate that I have TN, but just as Scott says, I am thankful for a wonderful ( late) father who also instilled in me that there are two states to think about. Either side of the ground, and that it is very important to be THANKFUL that I am on the sunny side of it!! There is so much to be happy about, therefore I try to concentrate on those.
8

Thanks for the kind words. I hope your exhaustion goes away soon. I pray that your surgery will be a success and you will have no more pain.

Mimi said:

Wise woman your Mother, bless her and you through this difficult time.
To honor your Mom and respect the spirit of your thread;

I HATE THAT I HAVE TN! I am exhausted , pain to varying degrees for 4 mths straight.

I am grateful for the caring, patience and loving kindness of my husband and children.
I am so incredibly thankful for the gift of HOPE provided by a neurosurgeon willing to perform an MVD on me in 2013.


(((Scott))) & ((((Scott's Mom)))), Mimi xx
9

Thanks for the kind words and the advice. I am sorry about your father in law. that had to be terrible. The advice you gave is good. I do have a pill case and programed my phone alarm for fill time. now when the alarm goes off everyone around me says "pill time"

Tina S said:

It's tough to face losing a parent. It sounds like your mother was a gem.

Stress can make everything go crazy, so watch yourself carefully and be proactive if you start having breakthrough pain. Also, since it sounds like you have the same high-quality short term memory that I do right now, make sure that you actually take your meds on schedule because losing a loved one doesn't tend to improve recall.

My father-in-law literally fell over dead on top of me in October and we wandered around in a daze for weeks. I started a flareup (possibly from the stress, I'm not sure, but the timing was impeccable) and completely forgot how to start medicating myself. Then I would forget when I had taken a pill and end up taking two or three doses. If you don't have one already, a pill keeper to separate the doses might be a good investment.

I'll try to add one to the list:

I hate that I have TN

I am thankful that I have TN because it's made me stronger and more resilient than I was before (but now that I've accomplished that I wouldn't complain if it went away!)

10

Sounds like your mom did her job well on earth by instilling her positive outlook in you and others. I am sorry for the loss you are going through. May you continue to honor her each day with your positive attitude. Thanks for sharing it with others.

I HATE THAT I HAVE TN - The meds made me too slow and forgetful to do my job anymore, which ended my 30 year corporate career.

BUT... since leaving that job I have never been happier! I was burned out had come to hate type of work I was doing. Trying to keep up the pace of young, healthy co-workers was exhausting and soooo damaging to my self-esteem. I decided I never want to go back to corporate life so I spent this summer/fall in school learning a new skill-set that will (hopefully) allow me to find a job at a non-profit blood donor center. It will be 1/4th the pay but I will be richer in so many other ways.

I HATE THAT I HAVE TN - It's winter and cold air is my trigger. Always miserable in the winter.

BUT... I don't have to leave the house today! I can look out the window at the beautiful snow, and knowing that I don't have to go out in it makes it even more beautiful!

ADDED BONUS: My car battery is dead and we really need groceries. BUT... I can write up a list for my husband to pick up on his way home from work!

11

God bless you for this! That is a great way to look at things. Your Mama must be one helluva woman! HUGS and prayers to you and your family. And give your Mama a big hug for all the values she instilled in you. xx Donna

12

I have 3 alarms set on my phone to go off every day when it's time to take my meds, LOL! I would NEVER remember. :-)



Tina S said:

It's tough to face losing a parent. It sounds like your mother was a gem.

Stress can make everything go crazy, so watch yourself carefully and be proactive if you start having breakthrough pain. Also, since it sounds like you have the same high-quality short term memory that I do right now, make sure that you actually take your meds on schedule because losing a loved one doesn't tend to improve recall.

My father-in-law literally fell over dead on top of me in October and we wandered around in a daze for weeks. I started a flareup (possibly from the stress, I'm not sure, but the timing was impeccable) and completely forgot how to start medicating myself. Then I would forget when I had taken a pill and end up taking two or three doses. If you don't have one already, a pill keeper to separate the doses might be a good investment.

I'll try to add one to the list:

I hate that I have TN

I am thankful that I have TN because it's made me stronger and more resilient than I was before (but now that I've accomplished that I wouldn't complain if it went away!)

13

I forgot to add that I like the way you have turned a negative into a positve. It is amazing to me how we can become stronger when we need. I think none of us would complain if it went away!

Scott said:

Thanks for the kind words and the advice. I am sorry about your father in law. that had to be terrible. The advice you gave is good. I do have a pill case and programed my phone alarm for fill time. now when the alarm goes off everyone around me says "pill time"

Tina S said:

It's tough to face losing a parent. It sounds like your mother was a gem.

Stress can make everything go crazy, so watch yourself carefully and be proactive if you start having breakthrough pain. Also, since it sounds like you have the same high-quality short term memory that I do right now, make sure that you actually take your meds on schedule because losing a loved one doesn't tend to improve recall.

My father-in-law literally fell over dead on top of me in October and we wandered around in a daze for weeks. I started a flareup (possibly from the stress, I'm not sure, but the timing was impeccable) and completely forgot how to start medicating myself. Then I would forget when I had taken a pill and end up taking two or three doses. If you don't have one already, a pill keeper to separate the doses might be a good investment.

I'll try to add one to the list:

I hate that I have TN

I am thankful that I have TN because it's made me stronger and more resilient than I was before (but now that I've accomplished that I wouldn't complain if it went away!)

14

Thanks for the kind words and and the great responses. I love the snow also, it is beautiful!

Mary L said:

Sounds like your mom did her job well on earth by instilling her positive outlook in you and others. I am sorry for the loss you are going through. May you continue to honor her each day with your positive attitude. Thanks for sharing it with others.

I HATE THAT I HAVE TN - The meds made me too slow and forgetful to do my job anymore, which ended my 30 year corporate career.

BUT... since leaving that job I have never been happier! I was burned out had come to hate type of work I was doing. Trying to keep up the pace of young, healthy co-workers was exhausting and soooo damaging to my self-esteem. I decided I never want to go back to corporate life so I spent this summer/fall in school learning a new skill-set that will (hopefully) allow me to find a job at a non-profit blood donor center. It will be 1/4th the pay but I will be richer in so many other ways.

I HATE THAT I HAVE TN - It's winter and cold air is my trigger. Always miserable in the winter.

BUT... I don't have to leave the house today! I can look out the window at the beautiful snow, and knowing that I don't have to go out in it makes it even more beautiful!

ADDED BONUS: My car battery is dead and we really need groceries. BUT... I can write up a list for my husband to pick up on his way home from work!

15

Thanks for the hugs and prayersand yes my mom is a helluva woman.
I will give her an extra hug.

Donna Cook Turnage said:

God bless you for this! That is a great way to look at things. Your Mama must be one helluva woman! HUGS and prayers to you and your family. And give your Mama a big hug for all the values she instilled in you. xx Donna

16

I am NOT thankful

That no one can come up with a cure, instead we take a gamble with surgery, if we have it we might turn out worse then if we didn't have it you don't know what to do, and the drugs you are taking you know are harming your body .... so instead of relaxing and enjoying the little things in life (like even brushing your teeth) you can never know when your next jolt or shock will happen ..... yeah I'm bitter and with this bad pain in the azz (I wish it was there) disease I have every right to be angry .... I want no pity and no God Bless you ...... I want people to get off their duff and find a cure, is anyone doing anything or is TN left behind and left in the dark as far as working on a cure ...... seems like there are higher and more important things on the list that needs a cure for and TN is at the bottom of the list ...... if I could wish this pain on anyone it would be the president and then I am positive a better cure would be found.

17

Your mother sounds wonderful Scott. I believe everyone should cherish and realize as you do everything a mother does for their children.My mom left my dad when I was 11mnths old and never came back, meaning she left me and my sisiter and never came back. Tried when I was an adult but would make plans and back out, not show up,etc. So I try my best to be the best mom I can because I would never do that to my child, don't even understand how a mom could. Sorry I'm ranting but this really hits a nerve for me. I am a mother of one daughter and we have the closest relationship for that I am thankful. I also 6 years ago gained two stepchildren. Both adults at the time, we developed very close relationships. The times I chereish most are when they are all home. I also now have two grandchildren, for that I am truly thankful. I never knew a heart could swell that big but they sure make mine.

I HATE THAT I HAVE TN but am thankful for my surgery this year and thankful I found all you guys, it has been great to read the experiiences, to get the support when I needed it, to have questions and worries answered. Thank you to you all

18

This is amazing! I love your positive outlook. TN sucks, but it doesn't have to define us.

19

Hi Linda,

I believe you have achieved your goal of being a great mother! I am glad you have had a good surgery and that you have found this site also. Thanks

Scott

Linda said:

Your mother sounds wonderful Scott. I believe everyone should cherish and realize as you do everything a mother does for their children.My mom left my dad when I was 11mnths old and never came back, meaning she left me and my sisiter and never came back. Tried when I was an adult but would make plans and back out, not show up,etc. So I try my best to be the best mom I can because I would never do that to my child, don't even understand how a mom could. Sorry I'm ranting but this really hits a nerve for me. I am a mother of one daughter and we have the closest relationship for that I am thankful. I also 6 years ago gained two stepchildren. Both adults at the time, we developed very close relationships. The times I chereish most are when they are all home. I also now have two grandchildren, for that I am truly thankful. I never knew a heart could swell that big but they sure make mine.

I HATE THAT I HAVE TN but am thankful for my surgery this year and thankful I found all you guys, it has been great to read the experiiences, to get the support when I needed it, to have questions and worries answered. Thank you to you all

20

Thanks and I agree TN sucks, but it doesn't have to define us.

longtobepainftee said:

This is amazing! I love your positive outlook. TN sucks, but it doesn't have to define us.