Guest guest Posted September 3, 2004 Report Share Posted September 3, 2004 , Thank you (and all the others) for your kind words. You yourself are an amazing person, and I know that many have benefitted from your support! I am glad you have joined the list to help those who need it, and know that we are all here for you also! I still have my wonderful bedroom that was once the living room. It is now painted purple (my favorite color) and Dad put doors in the doorways so I can have privacy, but during the day when they are open I can see into the dining room, family room, hallway, and front yard. It means I can still be social while in bed, something that was very important to me. My parents have gone to a lot of work to make sure I am comfortable. I also still have my hospital bed, it has been a wonderful tool. It allows me to eat in bed when I need to (which I do for at least one meal a day), sit up to read, or lay down. My insurance company has purchased one for me, so now I can modify it to look like a real bed. I have picked out a sleigh bed and dad is going to attach the headboard and footboard to my hospital bed. It is really important to me to have my room look like a regular bedroom and not a hospital room - something that is not easy to accomplish with so much life support equipment and other medical stuff. My mom has gone to a lot of trouble to slip cover things and hide things with curtains, and now my room just looks like a pretty bedroom. She even covered my bedside commode and added a padded seat cover so now it looks like a chair and not a commode! I really like that. Until we can get the sleigh bed, mom has slipcovered my headboard/footboard so we don't have that " ugly medical wood " showing as I like to call it. She has also curtained my life support cabinet that my dad built for all my machines. Other medical things are hidden in cabinets and drawers. Isn't she just amazing? My shift nurses are still around and doing an amazing job. I have to give credit to them, they really try very hard to keep me stable, and at the same time I have formed life long friendships with many of them. They also provide the wonderful service of staying with me so mom can go do those everyday things like grocery shopping, and getting some sleep. I have another bed in my room for my mom to sleep in on those nights that I don't have a night nurse. My docs have been amazing at coming up with ideas to keep me healthy and help me get better. And I have to say, this new water soluble CoQ10 has really helped a lot - way more than I ever imagined. Between that and everything else my doctors and mom have thought of I have bounced back. But most of all, the credit really goes to my mom, for everything she did and still does to keep me alive. I really could not ask for a more amazing or supportive family. I know I am incredibly blessed to have them in my life. Thank you again for your kind words, and everyone else who has been so supportive. It really has helped to know you are all here to answer questions when I have them! Keep Smiling, Nikki > Dear Nikki, > I cannot remember when I have rejoiced more here on Mitoldies than when > I read your recent post. Congratulations on this blessed good news. > I know we must all have been holding our collective breaths after your > mom told us about you. About having a hospital bed in the living room, > about all of the nurses, and about your fragility. > You are a magnificent person, Nikki, and that comes through, even in > cyberspace. I especially love your annual essay about your gratitude. > I have a friend who is a quadriplegiac, and when I have some > exacerbation of the mito, I try to keep Mark in mind. I put you and so > many others here with us in that same category. You try each day to live > with grace and with gratitude, and in so doing, you help each one of us > to keep our own problems in perspective. > > Thank you again, Nikki, and it is my prayer that you will continue to > respond to treatment. Please convey my greetings to your family, of whom > I am in awe... > Would that everyone here had such loving caregivers. > Thank you for being an exemplar, for being a gift to all the Mitoldies. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2004 Report Share Posted September 4, 2004 Nikki Hats off to your mom. You have obviously been her driving force, but it sounds like she is indeed wonderful. I know what you mean about wanting your bed to look like a normal bed. My hospital bed doesn't have a head or foot board, so when flat and made up it looks like a regular bed. I now need side rails and wasn't looking forward to them until I found out I can put them down during the day and cover them with my spread. Give your mom a big hug from me. She certainly has done much to make you happy and make you smile. Hugs to you, laurie > > Reply-To: > Date: Sat, 04 Sep 2004 05:20:41 -0000 > To: > Subject: Re: Wonderful News/ > > , > Thank you (and all the others) for your kind words. You yourself are > an amazing person, and I know that many have benefitted from your > support! I am glad you have joined the list to help those who need > it, and know that we are all here for you also! I still have my > wonderful bedroom that was once the living room. It is now painted > purple (my favorite color) and Dad put doors in the doorways so I can > have privacy, but during the day when they are open I can see into > the dining room, family room, hallway, and front yard. It means I can > still be social while in bed, something that was very important to > me. My parents have gone to a lot of work to make sure I am > comfortable. > > I also still have my hospital bed, it has been a wonderful tool. It > allows me to eat in bed when I need to (which I do for at least one > meal a day), sit up to read, or lay down. My insurance company has > purchased one for me, so now I can modify it to look like a real bed. > I have picked out a sleigh bed and dad is going to attach the > headboard and footboard to my hospital bed. It is really important to > me to have my room look like a regular bedroom and not a hospital > room - something that is not easy to accomplish with so much life > support equipment and other medical stuff. My mom has gone to a lot > of trouble to slip cover things and hide things with curtains, and > now my room just looks like a pretty bedroom. She even covered my > bedside commode and added a padded seat cover so now it looks like a > chair and not a commode! I really like that. Until we can get the > sleigh bed, mom has slipcovered my headboard/footboard so we don't > have that " ugly medical wood " showing as I like to call it. She has > also curtained my life support cabinet that my dad built for all my > machines. Other medical things are hidden in cabinets and drawers. > Isn't she just amazing? > > My shift nurses are still around and doing an amazing job. I have to > give credit to them, they really try very hard to keep me stable, and > at the same time I have formed life long friendships with many of > them. They also provide the wonderful service of staying with me so > mom can go do those everyday things like grocery shopping, and > getting some sleep. I have another bed in my room for my mom to sleep > in on those nights that I don't have a night nurse. My docs have been > amazing at coming up with ideas to keep me healthy and help me get > better. And I have to say, this new water soluble CoQ10 has really > helped a lot - way more than I ever imagined. Between that and > everything else my doctors and mom have thought of I have bounced > back. But most of all, the credit really goes to my mom, for > everything she did and still does to keep me alive. I really could > not ask for a more amazing or supportive family. I know I am > incredibly blessed to have them in my life. Thank you again > for your kind words, and everyone else who has been so supportive. It > really has helped to know you are all here to answer questions when I > have them! > > Keep Smiling, > Nikki > > >> Dear Nikki, >> I cannot remember when I have rejoiced more here on Mitoldies than > when >> I read your recent post. Congratulations on this blessed good news. >> I know we must all have been holding our collective breaths after > your >> mom told us about you. About having a hospital bed in the living > room, >> about all of the nurses, and about your fragility. >> You are a magnificent person, Nikki, and that comes through, even in >> cyberspace. I especially love your annual essay about your > gratitude. >> I have a friend who is a quadriplegiac, and when I have some >> exacerbation of the mito, I try to keep Mark in mind. I put you and > so >> many others here with us in that same category. You try each day to > live >> with grace and with gratitude, and in so doing, you help each one > of us >> to keep our own problems in perspective. >> >> Thank you again, Nikki, and it is my prayer that you will continue > to >> respond to treatment. Please convey my greetings to your family, of > whom >> I am in awe... >> Would that everyone here had such loving caregivers. >> Thank you for being an exemplar, for being a gift to all the > Mitoldies. >> > > > > 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. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2004 Report Share Posted September 4, 2004 Nikki Hats off to your mom. You have obviously been her driving force, but it sounds like she is indeed wonderful. I know what you mean about wanting your bed to look like a normal bed. My hospital bed doesn't have a head or foot board, so when flat and made up it looks like a regular bed. I now need side rails and wasn't looking forward to them until I found out I can put them down during the day and cover them with my spread. Give your mom a big hug from me. She certainly has done much to make you happy and make you smile. Hugs to you, laurie > > Reply-To: > Date: Sat, 04 Sep 2004 05:20:41 -0000 > To: > Subject: Re: Wonderful News/ > > , > Thank you (and all the others) for your kind words. You yourself are > an amazing person, and I know that many have benefitted from your > support! I am glad you have joined the list to help those who need > it, and know that we are all here for you also! I still have my > wonderful bedroom that was once the living room. It is now painted > purple (my favorite color) and Dad put doors in the doorways so I can > have privacy, but during the day when they are open I can see into > the dining room, family room, hallway, and front yard. It means I can > still be social while in bed, something that was very important to > me. My parents have gone to a lot of work to make sure I am > comfortable. > > I also still have my hospital bed, it has been a wonderful tool. It > allows me to eat in bed when I need to (which I do for at least one > meal a day), sit up to read, or lay down. My insurance company has > purchased one for me, so now I can modify it to look like a real bed. > I have picked out a sleigh bed and dad is going to attach the > headboard and footboard to my hospital bed. It is really important to > me to have my room look like a regular bedroom and not a hospital > room - something that is not easy to accomplish with so much life > support equipment and other medical stuff. My mom has gone to a lot > of trouble to slip cover things and hide things with curtains, and > now my room just looks like a pretty bedroom. She even covered my > bedside commode and added a padded seat cover so now it looks like a > chair and not a commode! I really like that. Until we can get the > sleigh bed, mom has slipcovered my headboard/footboard so we don't > have that " ugly medical wood " showing as I like to call it. She has > also curtained my life support cabinet that my dad built for all my > machines. Other medical things are hidden in cabinets and drawers. > Isn't she just amazing? > > My shift nurses are still around and doing an amazing job. I have to > give credit to them, they really try very hard to keep me stable, and > at the same time I have formed life long friendships with many of > them. They also provide the wonderful service of staying with me so > mom can go do those everyday things like grocery shopping, and > getting some sleep. I have another bed in my room for my mom to sleep > in on those nights that I don't have a night nurse. My docs have been > amazing at coming up with ideas to keep me healthy and help me get > better. And I have to say, this new water soluble CoQ10 has really > helped a lot - way more than I ever imagined. Between that and > everything else my doctors and mom have thought of I have bounced > back. But most of all, the credit really goes to my mom, for > everything she did and still does to keep me alive. I really could > not ask for a more amazing or supportive family. I know I am > incredibly blessed to have them in my life. Thank you again > for your kind words, and everyone else who has been so supportive. It > really has helped to know you are all here to answer questions when I > have them! > > Keep Smiling, > Nikki > > >> Dear Nikki, >> I cannot remember when I have rejoiced more here on Mitoldies than > when >> I read your recent post. Congratulations on this blessed good news. >> I know we must all have been holding our collective breaths after > your >> mom told us about you. About having a hospital bed in the living > room, >> about all of the nurses, and about your fragility. >> You are a magnificent person, Nikki, and that comes through, even in >> cyberspace. I especially love your annual essay about your > gratitude. >> I have a friend who is a quadriplegiac, and when I have some >> exacerbation of the mito, I try to keep Mark in mind. I put you and > so >> many others here with us in that same category. You try each day to > live >> with grace and with gratitude, and in so doing, you help each one > of us >> to keep our own problems in perspective. >> >> Thank you again, Nikki, and it is my prayer that you will continue > to >> respond to treatment. Please convey my greetings to your family, of > whom >> I am in awe... >> Would that everyone here had such loving caregivers. >> Thank you for being an exemplar, for being a gift to all the > Mitoldies. >> > > > > 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. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2004 Report Share Posted September 4, 2004 Dear Nikki, Now I am even more in awe of you and your family after reading this post! What beautiful accomodations your mom and dad have added to your room, Nikki. When our Rose had her baby in March, her room was outfitted to look like a " regular " room, with beautiful wooden cabinitry hiding all of the medical accoutrements. It seems that, with each medical device hidden, your spirit emerges that much more. I would suggest that you and your family write a book, or perhaps even start a newsletter, that would reveal your secrets to graceful and grateful living. Such a newsletter could to given to patients at the wonderful children's hospitals throughout this country and others. When people receive devastating diagnoses, their world seems to slip away, stolen by doctors' appointments, worry, dead ends, money problems, and horrific...LOSS. I guess that is why I so admire the young people on our list like you, Nikki. Thank you so much for the beautiful words you addressed to me, which I deeply appreciate. Take care. S. PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2004 Report Share Posted September 5, 2004 Nikki, Just wanted to say I love your Mom's creative ideas. And I absolutely agree with your philosophy of maintaining a normal- looking home whenever possible. The past few months (since I have been doing better) I have applied my mind and energy to similar ends. Got rid of the hospital bed in the LR and have a bed set up in my office with blankets and throws that match the colors in that room. We found under-the-bed storage that holds a lot of medical supplies. They roll out for easy access. What we need to keep out all the time we store in decorative baskets. Not sure my husband is up to slipcovering the potty chair or the IV pole, but those can go in the closet out of sight if someone is coming over and then pulled out at night. It really lifted my spirits to have the house looking more normal. When the potty was in the LR, some of my friends started proping their feet up on it or setting their water bottles on it and calling it " the end table. " My husband said, " Well, yeah, rear end. " Take care, Barbara > > Dear Nikki, > > I cannot remember when I have rejoiced more here on Mitoldies than > when > > I read your recent post. Congratulations on this blessed good news. > > I know we must all have been holding our collective breaths after > your > > mom told us about you. About having a hospital bed in the living > room, > > about all of the nurses, and about your fragility. > > You are a magnificent person, Nikki, and that comes through, even in > > cyberspace. I especially love your annual essay about your > gratitude. > > I have a friend who is a quadriplegiac, and when I have some > > exacerbation of the mito, I try to keep Mark in mind. I put you and > so > > many others here with us in that same category. You try each day to > live > > with grace and with gratitude, and in so doing, you help each one > of us > > to keep our own problems in perspective. > > > > Thank you again, Nikki, and it is my prayer that you will continue > to > > respond to treatment. Please convey my greetings to your family, of > whom > > I am in awe... > > Would that everyone here had such loving caregivers. > > Thank you for being an exemplar, for being a gift to all the > Mitoldies. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2004 Report Share Posted September 5, 2004 Dear Nikki, It is so wonderful to see you posting more on the site and describing how you make your life as normal as possible. You, and the other young peopoe on this site, really are an inspiration to us all, Celia > > Dear Nikki, > > I cannot remember when I have rejoiced more here on Mitoldies than > when > > I read your recent post. Congratulations on this blessed good news. > > I know we must all have been holding our collective breaths after > your > > mom told us about you. About having a hospital bed in the living > room, > > about all of the nurses, and about your fragility. > > You are a magnificent person, Nikki, and that comes through, even in > > cyberspace. I especially love your annual essay about your > gratitude. > > I have a friend who is a quadriplegiac, and when I have some > > exacerbation of the mito, I try to keep Mark in mind. I put you and > so > > many others here with us in that same category. You try each day to > live > > with grace and with gratitude, and in so doing, you help each one > of us > > to keep our own problems in perspective. > > > > Thank you again, Nikki, and it is my prayer that you will continue > to > > respond to treatment. Please convey my greetings to your family, of > whom > > I am in awe... > > Would that everyone here had such loving caregivers. > > Thank you for being an exemplar, for being a gift to all the > Mitoldies. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2004 Report Share Posted September 5, 2004 Dear Nikki, It is so wonderful to see you posting more on the site and describing how you make your life as normal as possible. You, and the other young peopoe on this site, really are an inspiration to us all, Celia > > Dear Nikki, > > I cannot remember when I have rejoiced more here on Mitoldies than > when > > I read your recent post. Congratulations on this blessed good news. > > I know we must all have been holding our collective breaths after > your > > mom told us about you. About having a hospital bed in the living > room, > > about all of the nurses, and about your fragility. > > You are a magnificent person, Nikki, and that comes through, even in > > cyberspace. I especially love your annual essay about your > gratitude. > > I have a friend who is a quadriplegiac, and when I have some > > exacerbation of the mito, I try to keep Mark in mind. I put you and > so > > many others here with us in that same category. You try each day to > live > > with grace and with gratitude, and in so doing, you help each one > of us > > to keep our own problems in perspective. > > > > Thank you again, Nikki, and it is my prayer that you will continue > to > > respond to treatment. Please convey my greetings to your family, of > whom > > I am in awe... > > Would that everyone here had such loving caregivers. > > Thank you for being an exemplar, for being a gift to all the > Mitoldies. > > Quote Link to comment Share on other sites More sharing options...
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