My grateful list for this year. nmr. long

[Guest guest]

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]

>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.<

Dear Nikki,

You have done wonderful things and touched people's hearts! I am one of

those people!

Thank you for letting me read your blessing list. We have kindred souls.

I will keep smiling,

Smiles to you,

[Guest guest]

Nikki

Mito may have shaped your life, but you are the one who gives so much to

others. My heart is one you have touched with your loving, caring, and

strength.

laurie

>

> Reply-To:

> Date: Wed, 19 May 2004 00:29:27 -0000

> To:

> Subject: My grateful list for this year. nmr. long

>

> 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

>

>

>

>

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>

>

>