My grateful list for this year. nmr. long

[Guest guest]

Nikki,

Once again.. you have left me speechless. Thank you for sharing this beautiful

message. I am grateful that I know you and can feel your wonderful spirit. We

are all blessed because you are a part of the group.

Not only are you talented in your writing, but your heart is pure and your

strength is powerful.

Hugs!

Alice

[Guest guest]

Nikki,

Again, you amaze me with this beautiful list. Every time I see a

grateful list of yours, I automatically write down what I am grateful for

on a piece of paper. You are truly an inspiration to me and others. I

am so glad that we have gotten to know each other. If it wasn't for this

list, we probably never would have, so I am truly grateful for that!

Plus, after the excitement of last week, I am sure you are grateful for

the " purple zone " ! LOL

Smiles,

a

> My Grateful List.

>

> Sometimes during our lives, things happen that make it hard to

> remember all we have to be grateful for. Living with a mitochondrial

> disease can be a difficult thing to work through. There are so many

> symptoms that our doctors and we have a hard time figuring out. It is

> a tough situation to be in. We have to manage our own health, and be

> our own advocate so that we can receive the care that we need to be

> the healthiest we can possibly be. I have a theory that I can either

> see this disease simply as a trial and dwell on the tough times that

> come with this disease, or I can work through those tough times with

> a smile on my face and happiness in my heart. One of the ways I do

> this is to write a " What I am Grateful For " list. I wanted to share

> my list with you. Some of the things on my list are things that are

> so incredibly easy to be grateful for. Others are incredibly hard.

> Either way I have chosen to see the good in my life, and dwell on

> that instead of the sadness and tough times. I believe it helps me to

> read my list when I am going through tough times to remind myself how

> very blessed I am. It would be wonderful to hear what everyone else

> is grateful for.

>

> 1. I am grateful for the mitochondrial specialists. They have

> given up their time and their energy to help all of us learn about

> our disease through articles, appointments and chat rooms. They have

> dedicated their lives to finding new treatments and the search for a

> cure. They are truly amazing professionals and I don't know where I

> would be without these mitochondrial specialists.

>

> 2. I am grateful for my own medical team of doctors. My doctors

> work well together and are truly a team. They share information and

> ideas with each other so that I can have as few appointments as

> possible. My doctors truly care about me and love me. They try their

> hardest to treat my disease to the best of their ability. Without

> them I would not be as healthy as I am. They respect me and my wishes

> and do their best to carry them out. I am so glad they are a part of

> my life. It can be hard to have so many doctors involved in our care,

> and my doctors make it as easy as they can.

>

> 3. I am grateful for my home health nursing team. What an

> amazing group of nurses I have involved in my care! My shift nurses

> take such wonderful care of me. My night nurse Pam watches movies

> with me and is always there when I just need to talk. She is also

> always there when I need her help, and is constantly willing to do

> what she can to make my life easier. My day shift nurse is a

> wonderful friend and nurse! She is nice to talk to, and she takes

> such great care of me. My infusion nurse tries as hard as he

> can to make sure my groshong works well, and helps to get it working

> again when it does stop. My nursing case manager for home health

> shift nursing is also an amazing woman. She used to be my shift nurse

> when I was young, and I am so glad she is still involved in my care.

> My nursing case managers make sure I get what I need, and my

> insurance case manager makes sure that what I need gets approved. I

> am so glad I have these nurses in my life.

>

> 4. I am grateful for modern medicine. I am grateful for those

> who have come up with treatments to help me. I am grateful I live in

> a time where such wonderful medical care is available.

>

> 5. I am grateful for my Groshong. When I first had to get my

> central line, it was hard. It was one more new thing, and a reminder

> of how my disease had progressed. Now I look at it like a blessing.

> Without it I would not be able to receive my Carnitor through my IV,

> and my Carnitor keeps me alive. It means I don't have to get stuck

> every time I need a blood draw, and it makes it easier to receive

> additional IV medications.

>

> 6. I am grateful for my life support machines. I am grateful

> for my ventilator. I am on non-invasive ventilation, and my

> ventilator and mask have made it possible for me to not be trached.

> The mask and machine make sure I breathe, and according to my medical

> team breathing is important! I am grateful for my o2 sat machine, my

> C02 machine, my vital signs equipment. Sometimes it is hard to have

> so many machines keeping me alive, and then I remember I wouldn't be

> alive without them. My vital signs equipment help my mother, myself

> and my nurses know when I am sick and need more treatment, and when I

> am well. It is a wonderful blessing to have these machines. Many of

> them were not available when I was a baby, and they are now. I don't

> know where I would be without them.

>

> 7. I am grateful for my wheelchairs and my walker. They give me

> mobility and allow me to go places I wouldn't otherwise be able to

> go. My walker means I can get around my house on my own and maintain

> some independence. My latest chair is a recliner chair that lies down

> to a bed. With this chair I can be in public for as long as I want,

> because I can rest whenever I need to. It has made my life easier.

>

> 8. I am grateful for my local fire department, paramedics and

> EMT's. They play an important role in my health care.

>

> 9. I am grateful for my local hospital. They are there when I

> need them to help treat me. My doctors there are willing to learn

> about this disease so that they can treat my disease the way it needs

> to be treated.

>

> 10. I am grateful that I am alive. So many times I have heard the

> phrase " she isn't going to be alive much longer " or " she won't make

> it through the night " . I believe that hearing this has made me a

> stronger person and has increased my will to live that much more. It

> has made me enjoy my life and not take life for granted.

>

> 11. I am grateful for the energy I have, though be it very

> limited. I many not have much, but it is enough that I have a good

> quality of life. With the energy I do have I believe I can do

> wonderful things and touch people's hearts. Hopefully with my energy

> I have been able to make this world a better place.

>

> 12. I am grateful I was able to complete my education and get my

> degree. Even though I am unable to work and put my degree to use each

> and every day, it was a goal I wanted badly to accomplish and I did.

> I don't regret the hard days when I could barely get to school or the

> amount of energy and time it took. It was completely worth it.

>

> 13. I am grateful people allow me to do the things I am able to

> do, instead of doing them for me. I am also grateful that they do

> things for me that I am not able to do for myself.

>

>

> 14. I am grateful for the United Mitochondrial Disease Foundation

> and The Muscular Dystrophy Association. I am grateful for the

> treatment options and support that these organizations provide. I am

> grateful for those who are involved with these organizations to make

> that possible. I am grateful for those who donate to these

> organizations, be it 1 dollar or a thousand dollars. Every cent helps

> us find new treatments and helps the doctors in the search for a cure.

>

> 15. I am grateful that throughout my journey with mito that the

> people involved in my medical care have been honest with me. They

> have never tried to hide the facts from me, and were there to support

> me and help me when I needed it.

>

> 16. I am grateful for a diagnosis. I have had major symptoms from

> birth, and it was a very long journey to figure out what I had.

> Finally, at the age of 20, my doctors were able to tell me it was

> mito. It makes it easier to know what I have.

>

> 17. I am grateful for the mito lists, and the people I have met

> here. I have made many wonderful friends. I have learned so much from

> all of you. Thank you for your support and for sharing your knowledge

> with me.

>

> 18. I am grateful for this disease. It has taught me about life

> and death, about living and loving. I would be a completely different

> person if I did not have this disease. I wouldn't know as much about

> life. I believe it has enabled me to do good things for others and

> has allowed me to see life in a completely unjaded way.

>

> 19. I am grateful for the opportunities I have had to volunteer

> with various organizations. I am grateful that I did this while I was

> still able to. I worked with children with disabilities, and through

> seeing their courage and love for life, it reminded me all the time

> that it doesn't matter if we are sick, we can still have a good life.

> I learned many life lessons from these children, and believe they

> gave me more than I was able to give them. I started volunteering to

> give back to the organizations that had given so much to me, and in

> return received many wonderful blessing and created memories that

> will last a lifetime.

>

> 20. I am grateful for the chance I had to be a mother to Amara.

> Being a mother was one of the absolute best experiences of my life,

> and one of the hardest. I learned many things about life from Amara,

> and I know we created many happy memories that will never be

> forgotten. No matter what happens, she will be my daughter, and I

> will be her mother.

>

> 21. I am grateful for the opportunity I had to be in love. It

> didn't last all that long, but I had the experience and I am glad

> that I did.

>

> 22. I am grateful for my niece Ally so much that it is hard to

> put into words. She is a wonderful happy go lucky baby. She loves me

> and her face lights up when she sees me, which makes my day! I have

> so much fun with her, playing and laughing and sometimes just

> cuddling. My life is so much better with her in it.

>

> 23. I am grateful for my sister and everything she does for me.

> She is very involved in my medical care, and helping me in every way

> she can. We have a wonderful time together, and the older we get the

> better our relationship and friendship gets. She has lovingly and

> willingly allowed me to be a major part of Ally's life, by letting me

> help raise her and see her every day. She has told me more than once

> that Ally is " our baby " . I could not have ever received a better

> gift. I love my sister so very much!

>

> 24. I am grateful for my dad and everything he does for me and my

> family. He goes to work to make sure that we have the things that we

> need. He spends time with me, watching movies and just talking when I

> am too tired and weak to do anything else. He gives up his time so

> that I can go shopping and get out of the house. I am a very blessed

> person to have the father that I have.

>

> 25. I am grateful for my mother. She is the most amazing woman I

> have ever met. She has given up her own life to make sure that I have

> a wonderful life and receive the care that I need. She is there to

> hold my hand through the painful times, and laugh with me during the

> good times. She is there to be my advocate, and she is my main

> caregiver. I love her so very much.

>

> 26. I am grateful for my family as a whole and the love that they

> give me. I love them so very much. I don't know where I would be

> without my family. They have stood by my side through every trial,

> every hardship, every painful procedure

>

>

> I want all of you to know that I truly do love my life just the way

> it is. I know that my trials may be different from most people, but

> everyone has their trials and hardships. I was dealt this hand, and I

> want to make the best of my life and the time that I have on this

> Earth. This disease has made me a much stronger person. It has shaped

> my character – for the better.

>

> Keep smiling,

> Nikki

>

>

>

>

> Medical advice, information, opinions, data and statements contained

herein

> are not necessarily those of the list moderators. The author of this e

mail is

> entirely responsible for its content. List members are reminded of

their

> responsibility to evaluate the content of the postings and consult with

their

> physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one

is

> automatically moderated or removed depending on the severity of the

attack.

>

>

>

>

[Guest guest]

You live with such grace, Nikki. I have heard most of this story

before, but reading it in the form of a long litany of gratefulness

is so moving that it is my turn to be grateful--to have this glimpse

into your life, the person that you are, the family that surrounds

you and the uncommon strength that binds you all together.

My mother always says you can't always choose what happens to you,

but you can always choose how you react to it. Words to live by.

Barbara

PS I have printed this to share with friends.

[Guest guest]

Nikki,

You have an amazing perspective on life and I'm sure that in the

sharing of your thoughts you have inspired many others to look at

their lives a little differently.

I had the pleasure of meeting your mom and sister recently and

thought that you were a lucky girl to have such a loving, supportive

family. Although I've never met you, I'm now getting a glimpse at

how lucky they are to have you as a part of their lives.

Thank you for sharing your grateful list with us.

Maggie

> My Grateful List.

>

> Sometimes during our lives, things happen that make it hard to

> remember all we have to be grateful for. Living with a

mitochondrial

> disease can be a difficult thing to work through. There are so

many

> symptoms that our doctors and we have a hard time figuring out. It

is

> a tough situation to be in. We have to manage our own health, and

be

> our own advocate so that we can receive the care that we need to

be

> the healthiest we can possibly be. I have a theory that I can

either

> see this disease simply as a trial and dwell on the tough times

that

> come with this disease, or I can work through those tough times

with

> a smile on my face and happiness in my heart. One of the ways I do

> this is to write a " What I am Grateful For " list. I wanted to

share

> my list with you. Some of the things on my list are things that

are

> so incredibly easy to be grateful for. Others are incredibly hard.

> Either way I have chosen to see the good in my life, and dwell on

> that instead of the sadness and tough times. I believe it helps me

to

> read my list when I am going through tough times to remind myself

how

> very blessed I am. It would be wonderful to hear what everyone

else

> is grateful for.

>

> 1. I am grateful for the mitochondrial specialists. They have

> given up their time and their energy to help all of us learn about

> our disease through articles, appointments and chat rooms. They

have

> dedicated their lives to finding new treatments and the search for

a

> cure. They are truly amazing professionals and I don't know where

I

> would be without these mitochondrial specialists.

>

> 2. I am grateful for my own medical team of doctors. My doctors

> work well together and are truly a team. They share information

and

> ideas with each other so that I can have as few appointments as

> possible. My doctors truly care about me and love me. They try

their

> hardest to treat my disease to the best of their ability. Without

> them I would not be as healthy as I am. They respect me and my

wishes

> and do their best to carry them out. I am so glad they are a part

of

> my life. It can be hard to have so many doctors involved in our

care,

> and my doctors make it as easy as they can.

>

> 3. I am grateful for my home health nursing team. What an

> amazing group of nurses I have involved in my care! My shift

nurses

> take such wonderful care of me. My night nurse Pam watches movies

> with me and is always there when I just need to talk. She is also

> always there when I need her help, and is constantly willing to do

> what she can to make my life easier. My day shift nurse is a

> wonderful friend and nurse! She is nice to talk to, and she takes

> such great care of me. My infusion nurse tries as hard as

he

> can to make sure my groshong works well, and helps to get it

working

> again when it does stop. My nursing case manager for home health

> shift nursing is also an amazing woman. She used to be my shift

nurse

> when I was young, and I am so glad she is still involved in my

care.

> My nursing case managers make sure I get what I need, and my

> insurance case manager makes sure that what I need gets approved.

I

> am so glad I have these nurses in my life.

>

> 4. I am grateful for modern medicine. I am grateful for those

> who have come up with treatments to help me. I am grateful I live

in

> a time where such wonderful medical care is available.

>

> 5. I am grateful for my Groshong. When I first had to get my

> central line, it was hard. It was one more new thing, and a

reminder

> of how my disease had progressed. Now I look at it like a

blessing.

> Without it I would not be able to receive my Carnitor through my

IV,

> and my Carnitor keeps me alive. It means I don't have to get stuck

> every time I need a blood draw, and it makes it easier to receive

> additional IV medications.

>

> 6. I am grateful for my life support machines. I am grateful

> for my ventilator. I am on non-invasive ventilation, and my

> ventilator and mask have made it possible for me to not be

trached.

> The mask and machine make sure I breathe, and according to my

medical

> team breathing is important! I am grateful for my o2 sat machine,

my

> C02 machine, my vital signs equipment. Sometimes it is hard to

have

> so many machines keeping me alive, and then I remember I wouldn't

be

> alive without them. My vital signs equipment help my mother,

myself

> and my nurses know when I am sick and need more treatment, and

when I

> am well. It is a wonderful blessing to have these machines. Many

of

> them were not available when I was a baby, and they are now. I

don't

> know where I would be without them.

>

> 7. I am grateful for my wheelchairs and my walker. They give me

> mobility and allow me to go places I wouldn't otherwise be able to

> go. My walker means I can get around my house on my own and

maintain

> some independence. My latest chair is a recliner chair that lies

down

> to a bed. With this chair I can be in public for as long as I

want,

> because I can rest whenever I need to. It has made my life easier.

>

> 8. I am grateful for my local fire department, paramedics and

> EMT's. They play an important role in my health care.

>

> 9. I am grateful for my local hospital. They are there when I

> need them to help treat me. My doctors there are willing to learn

> about this disease so that they can treat my disease the way it

needs

> to be treated.

>

> 10. I am grateful that I am alive. So many times I have heard

the

> phrase " she isn't going to be alive much longer " or " she won't

make

> it through the night " . I believe that hearing this has made me a

> stronger person and has increased my will to live that much more.

It

> has made me enjoy my life and not take life for granted.

>

> 11. I am grateful for the energy I have, though be it very

> limited. I many not have much, but it is enough that I have a good

> quality of life. With the energy I do have I believe I can do

> wonderful things and touch people's hearts. Hopefully with my

energy

> I have been able to make this world a better place.

>

> 12. I am grateful I was able to complete my education and get my

> degree. Even though I am unable to work and put my degree to use

each

> and every day, it was a goal I wanted badly to accomplish and I

did.

> I don't regret the hard days when I could barely get to school or

the

> amount of energy and time it took. It was completely worth it.

>

> 13. I am grateful people allow me to do the things I am able to

> do, instead of doing them for me. I am also grateful that they do

> things for me that I am not able to do for myself.

>

>

> 14. I am grateful for the United Mitochondrial Disease

Foundation

> and The Muscular Dystrophy Association. I am grateful for the

> treatment options and support that these organizations provide. I

am

> grateful for those who are involved with these organizations to

make

> that possible. I am grateful for those who donate to these

> organizations, be it 1 dollar or a thousand dollars. Every cent

helps

> us find new treatments and helps the doctors in the search for a

cure.

>

> 15. I am grateful that throughout my journey with mito that the

> people involved in my medical care have been honest with me. They

> have never tried to hide the facts from me, and were there to

support

> me and help me when I needed it.

>

> 16. I am grateful for a diagnosis. I have had major symptoms

from

> birth, and it was a very long journey to figure out what I had.

> Finally, at the age of 20, my doctors were able to tell me it was

> mito. It makes it easier to know what I have.

>

> 17. I am grateful for the mito lists, and the people I have met

> here. I have made many wonderful friends. I have learned so much

from

> all of you. Thank you for your support and for sharing your

knowledge

> with me.

>

> 18. I am grateful for this disease. It has taught me about life

> and death, about living and loving. I would be a completely

different

> person if I did not have this disease. I wouldn't know as much

about

> life. I believe it has enabled me to do good things for others and

> has allowed me to see life in a completely unjaded way.

>

> 19. I am grateful for the opportunities I have had to volunteer

> with various organizations. I am grateful that I did this while I

was

> still able to. I worked with children with disabilities, and

through

> seeing their courage and love for life, it reminded me all the

time

> that it doesn't matter if we are sick, we can still have a good

life.

> I learned many life lessons from these children, and believe they

> gave me more than I was able to give them. I started volunteering

to

> give back to the organizations that had given so much to me, and

in

> return received many wonderful blessing and created memories that

> will last a lifetime.

>

> 20. I am grateful for the chance I had to be a mother to Amara.

> Being a mother was one of the absolute best experiences of my

life,

> and one of the hardest. I learned many things about life from

Amara,

> and I know we created many happy memories that will never be

> forgotten. No matter what happens, she will be my daughter, and I

> will be her mother.

>

> 21. I am grateful for the opportunity I had to be in love. It

> didn't last all that long, but I had the experience and I am glad

> that I did.

>

> 22. I am grateful for my niece Ally so much that it is hard to

> put into words. She is a wonderful happy go lucky baby. She loves

me

> and her face lights up when she sees me, which makes my day! I

have

> so much fun with her, playing and laughing and sometimes just

> cuddling. My life is so much better with her in it.

>

> 23. I am grateful for my sister and everything she does for me.

> She is very involved in my medical care, and helping me in every

way

> she can. We have a wonderful time together, and the older we get

the

> better our relationship and friendship gets. She has lovingly and

> willingly allowed me to be a major part of Ally's life, by letting

me

> help raise her and see her every day. She has told me more than

once

> that Ally is " our baby " . I could not have ever received a better

> gift. I love my sister so very much!

>

> 24. I am grateful for my dad and everything he does for me and

my

> family. He goes to work to make sure that we have the things that

we

> need. He spends time with me, watching movies and just talking

when I

> am too tired and weak to do anything else. He gives up his time so

> that I can go shopping and get out of the house. I am a very

blessed

> person to have the father that I have.

>

> 25. I am grateful for my mother. She is the most amazing woman I

> have ever met. She has given up her own life to make sure that I

have

> a wonderful life and receive the care that I need. She is there to

> hold my hand through the painful times, and laugh with me during

the

> good times. She is there to be my advocate, and she is my main

> caregiver. I love her so very much.

>

> 26. I am grateful for my family as a whole and the love that

they

> give me. I love them so very much. I don't know where I would be

> without my family. They have stood by my side through every trial,

> every hardship, every painful procedure

>

>

> I want all of you to know that I truly do love my life just the

way

> it is. I know that my trials may be different from most people,

but

> everyone has their trials and hardships. I was dealt this hand,

and I

> want to make the best of my life and the time that I have on this

> Earth. This disease has made me a much stronger person. It has

shaped

> my character – for the better.

>

> Keep smiling,

> Nikki

[Guest guest]

Thank you to all of you for your kind words. This is such a

wonderful group of people and I am so glad to know all of you.

a, I should have added that I was grateful for the " purple

zone " lol. I forgot about that one! Maggie, my mom and sister

really are wonderful people. I know my life is a thousand times

better with them in it. Thanks again to all of you!

Keep Smiling,

Nikki

[Guest guest]

Nikki,

You are something else lady.Your post makes us all think about what

we are grateful for but I never seen it put in such moving words.I

know all this came from the bottom of your heart.Anyone would be

honored to have you as a MOm,Daughter or sister.Above all a FRIEND.My

best to you and yours.

B De Moss Aunt Sandy