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nikkinet's Blog
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My Grateful List, part 3 12-21-2005 - 10:31 PM
20. I am grateful for friendship. I am grateful that I have so many wonderful friends, old and new, older and younger. I am grateful that I have the wonderful relationships that I have. I am grateful for Online support groups; For the love and caring I find there, the people who have taught me so much, and have helped me through some hard times.

All my friends, new and old, who have been there for me over the years. My friends whom I have met in school, and my friends whom I have met over the internet. Each and every one of them are important to me, and each and every one of them are in my prayers and my thoughts. Thank you all for your friendship, your kindness, your love.

21. 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. It hurts still when I think of how I still could have been her mother if I hadn't gotten so sick. I remind myself that even though it was only 18 months, it will be one of the most important 18 months of my life and no one can take that away from me. Every time I look at her picture I remember that she is my daughter and nothing will change that. I really hope she will always know how much I love her, and how large an impact she had on my life. She taught me amazing lessons, ones I will never forget. It was an incredible blessing to be a mother, and I wish every woman could have the experience.

22. 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.

23. I am grateful for my religion. I belong to the Church of Jesus Christ of Latter-Day Saints, and I know my knowledge of the gospel has helped me through some very hard times. I am glad that I know I will be with my family forever. I am grateful I was able to go to the Temple and have that experience. It was a day I will never forget. I am grateful for the scriptures and the many lessons they contain. I am grateful for my Father in Heaven, and I know He loves me very much. I am grateful for the friendship and love I find at church, I know that the people in my church will be by my side through anything, all the time.

24. I am grateful for my niece Ally so much that it is hard to put into words. She is a wonderful happy go lucky child. 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. She recently started calling me "Auntie" or "Auntie Nikki". The first time she called me Auntie I wanted to cry with joy because it just warmed my heart. I am an Auntie, and it is the most amazing blessing! Ally is one of the main reasons why I fight so hard. I just can't bear to leave her. I still have so much I want to do with her, so much I want to experience with her. When I am having my worst days and she comes screeching into my room yelling "Nikki's up, Nikki's up" and gives me hugs and kisses, it reminds me that this is worth it. She reminds me that there is joy in this life. I really could go on forever about Ally. I love her so much. I hope one day she realizes that.

25. 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 little girl". I could not have ever received a better gift. How can you thank someone for a gift like that? I haven't figured that out yet. Jaime is such an amazing woman and she has just taught me so many lessons about life. She has shown me how to be brave and how to be courageous. She has been through so much in her life, so many hardships and trials, ones that would break a lesser woman. She has stood up and found her voice, she has learned that she has the power to protect herself. I see her struggle and it breaks my heart - I just want to take away her pain. Yet I see how she works through that pain, how she is able to find the joy in her life despite the horribly hard times. She is an example to me, she is someone I look up to and aspire to be like. I wonder if she realizes just how large an impact she has had on my life. I wonder if she realizes just how much I love her. I wonder if she knows how grateful I am, how blessed I am, to be her sister.

26. 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. I love him more than life itself. I know he is there whenever I need him, and he is there to talk, to comfort, to just be with me. I love him very very much and I hope he realizes just how much.

27. 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. I know that life is anything but easy on her. She, however, is the one who taught me to smile through the pain. She is the one who taught me to see the joy in life, to find those hidden blessings. She has taught me so much, but more than that she has been there when I need her to laugh with me, she has been there to cry with me, she has been there to hold me and to comfort me. More than that, she saves my life each and every night. I hope one day she realizes just how amazing she truly is. And I hope she realizes how valued she is and how much her family loves her and appreciates her. We would be lost without. I would be lost without her. I love her, I admire her and I am grateful for her. I am proud to call her my mother.

28. 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 am not quite sure how to thank people who save my life each day. I don't know if they know how valued they are. But I love them, for whatever it is worth, and I always will. They are my family, they are my life. They are the reason I wake up in the morning, they are the reason I fight through each night. They are the reason I take each breath. I never want to have to leave them. I am so glad I know that we will be a forever family. I love them. I am blessed to have them. And I will never forget that.

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.

s
Keep smiling,

Nikki
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My Grateful list, part 2 12-21-2005 - 10:30 PM
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. I truly believe that if I am able to touch just one person's heart, make a difference in just one person's life than all of this pain, the treatments, the machines, the disease itself will be worth it. It is worth it to me if I can make just a small difference, even just making someone smile reminds me that my life is worth something and it is to be treasured.

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. Since I completed my degree I have had a lot of memory loss. A lot of what I learned and was taught in school is now gone. However I still think the experience will stay with me, and I will work twice as hard to re-learn all of 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. I am grateful that people step up to the plate and remind me I don't have to prove anything and I don't have to do it all myself. They remind me it is ok to ask for help. I have been told several times that I need to give others the blessing of helping me. I think that is a different way of looking at it, and it makes it easier to accept help when I know that it will be a blessing to someone else.

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. I hope those that donate realize just how large of an impact they have had on my life. I sincerely wish I could personally thank each and everyone of them.

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. They were there to carry me when I was too weak to carry myself. They have held my hand through those horrible long nights in ICU, but mostly they haven't tried to hide anything. It is amazing how honest people are with me. I hope they know how much I appreciate 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. I admit that I have days when I wish it wasn't mito, when I wish it was something curable. But I remind myself that it is what it is, and I am just glad to finally have an answer. I didn't think it would make that much difference but it truly has.

17. 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 un-jaded way. I think that because of the mito I have been able to experience things I would have otherwise not been able to. It did make me grow up pretty fast, but it is oh so worth it. My view on life is so simple - this life is a blessing and should never be taken for granted. I learned that at such an early age, and I am so glad I figured it out before it was too late.

18. 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.

19. I am grateful that I had the hysterectomy. It was certainly a rough ride, and it was a long hospital stay, but it is so nice to not have a uterus anymore. I am grateful that my doctors took such wonderful care of me post op, and I am grateful that they continue to take great care of me. I am glad I made the decision that was best for me, and I am glad that I had a lot of support along the way. I am ever so grateful for hystersisters.com and all of my hystersisters. They have made this journey a LOT easier!
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My Grateful List, Part 1 12-21-2005 - 10:30 PM
Hello everyone. I wanted to share my grateful list with all of my wonderful hystersisters!! It is really long, so I will try and divide it into several parts. This is part 1.

Sometimes during our lives, things happen that make it hard to remember all we have to be grateful for. Living with a chronic illness 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. My list is in no particular order.

1. I am grateful for the mitochondrial disease specialists. They have given up their time and their energy to help all of those with mito 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 disease 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 my 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 day shift nurse Lisa is a wonderful friend and nurse! She is nice to talk to, and she takes such great care of me. My infusion nurse Russell 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 vent nursing case managers Cynthia and Jackie 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. I am grateful for my night nurse Pam. 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. She is not only an amazing nurse, she is an amazing friend. I am so grateful to have her in my life. She is a woman to be looked up to, a woman to be admired. I am also grateful for her daughter Jessica, who has become a wonderful friend of mine. We have so much fun together and she is an amazing young woman. She has broken down so many barriers, but more than that she is sweet, kind and caring. She has amazing qualities and I am proud to call her my friend.

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. It has caused some problems, but without it I truly would not be alive. How can I not be grateful for something that keeps me alive?

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. As time goes by I am placed on newer machines, or additional machines, and each time I remind myself how blessed I am to be able to use them to stay alive. How blessed I am that I have this technology. It is an incredible blessing, and one I am so forever grateful for.

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. My mom took time to design this chair for me, and I am grateful for that. It really truly is the best wheelchair I have ever had. Sometimes people say I am "wheelchair bound". But truly, I see my wheelchair as a symbol of freedom and independence. It is a good thing to have in my life, not a bad thing. It is to be looked at as a blessing and not a trial.

8. I am grateful for my local fire department, paramedics and EMT's. They play an important role in my health care. They allow me to quickly gain access to the healthcare that I need, and on the way there they take great care of me.

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. This last time that I was in the hospital I had many IV's, machines, medications and treatments keeping me alive. I know it was difficult for my doctors to coordinate my care, and to make sure every specialty was doing their individual job. My doctors at the hospital impressed me with their ability to work together as a team. I wonder if they will ever realize how grateful I am to have them as my doctors, and what a blessing they have been in my life. I hope they do.

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. This last hospital stay reminded me that life is precious and I need to enjoy every single moment. I was reminded why I fight so hard to stay alive. Every now and then I think I need an opportunity to remember just how special of a gift life is. It is so humbling to experience this. It is a blessing. An amazing blessing.
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