I am adding a post to my blog after nothing for two years. My health has slowly but steadily improved. Not without bumps in the road; challenges from the damage the disease had on my organs; but over all improving.
I mentioned to a friend that this year I actually was living, not surviving, but living.
I am five years out from the stem cell transplant. My expiration date has come and past. They told me that I might have 3-5 years of life after my stem cell transplant, if I survived the transplant.
I continue to have a large number of tests done every three months because "the disease will awaken" and they want to be right on top of it when it does. My last numbers were the best in five years!
The past year and a half I have watched 3 friends about my age get diagnosed and pass away from cancer. With each one I have been fraught with survivor's guilt. "Why me"? and not them?
They were all good ladies, much better than I. Yet I remain and they are gone.
The past nine months a sweet young man who I became acquainted with Brendan Peck was diagnosed with a rare brain cancer which then reoccurred as bone cancer and metasized to his bones and everywhere. He passed away today. In my visits with him, I was amazed at the knowledge and faith he had. He so graciously thanked me and asked me to please come back to see him because it was so nice to visit with someone who understood things.
He was so gracious and concerned about all of his visitors.
I had some inspiration from time to time on the fact I needed to visit him, and even what I needed to talk with him about. Silly me thought that perhaps I was helping him in some way. As I reflect back now, my visit with him filled me.
My heart is extremely sad for his passing, but I am so grateful he isn't suffering anymore. I feel so very sad for his family and their loss of this amazing son.
I think back to the many many wonderful things that happened on my journey and remembered I said, "I would do it all over again because of what I had experienced and learned". The good, the spiritual, the growth, the testimony I gained all outweighed the hard times and the pain.
I know that the Peck family have had some pretty amazing things happen too. In time, I hope they find joy in their memories.
I am so grateful that I was asked to substitute for a sister to teach her Relief Society lesson this weekend. I haven't taught a lesson for over five years and then it was to the primary children. It has been over 10 years since I taught adults. It is very scary for me. I have studied and prayed about it diligently. The topic is so very dear to my heart, "The enabling power of the atonement".
As I was reading in the Book of Mormon last night, thinking of adding a scripture to the lesson this hit me right between the eyes.
Mosiah 24: 14-15 this is when the people of Alma are in bondage to the Lamanites and they are being persecuted terribly by Amulon and are going to be put to death.
The Lord tells them this: "I will ease the burdens which are put upon your shoulders, that even you cannot feel them upon your backs, even while you are in bondage: and this will I do that YE MAY STAND AS WITNESSES FOR ME HEREAFTER, and that YE MAY KNOW OF A SURETY THAT I, THE LORD GOD, DO VISIT MY PEOPLE IN THEIR AFFLICTIONS.
And now it came to pass that the burdens which were laid upon Alma and his brethren were made light; yea, the Lord did STRENGTHEN them that they could bear up their burdens with ease and they did submit cheerfully and with patience to all the will of the Lord".
I felt and I know of a surety, and I have even testified that I know I was to "stand as a witness of the Lord's love and power". Those were my exact words!! This passage doesn't tell me exactly why I am here, but it does tell me what I am to do.
I don't have survivors guilt today. I have sorrow and yet I have joy.
Oh how wonderous is the Lord Jesus Christ and our Heavenly Father.
Saturday, July 23, 2016
Friday, March 27, 2015
A Great day
HCI and the University of Utah's Amyloidosis Program officially launched
with a ribbon cutting yesterday evening. Amyloidosis occurs when an
abnormal protein builds up in the body.
This protein can affect the heart, kidneys, nerves, skin, and digestive
tract. Though it's not cancer, amyloidosis is sometimes treated with
chemotherapy and bone marrow transplants, so HCI will provide those
treatments to amyloidosis patients. To learn more, visit http://bit.ly/1xiw5qB.
The photo wouldn't copy Finally Utah is getting interested in Amyloidosis. The Huntmans program will work to make University of Utah a center of excellence. In all, it is pretty amazing that 4 years ago when I was diagnosed there wasn't much knowledge, awareness or interest at that time about Amyloidosis. Most of the Centers of Excellence are in the East. Criteria are:
1. Must have organ specialists on board
2. Have capability to do organ transplants if necessary
3. Have unit and support for patients
4. Ability to do stem cell transplantation
5. Treat a certain number of patients each year.
I hope the valley will ovecome political issues and support this. It sounds like they have brought in new physicians who have good experience with Amyloidosis.
The other really neat thing is that there will be support group meetings in Utah now!! I can visit Lindsay and Stan but not have to have Lindsay haul me to the support group meeting.
Not only is there hastening of the work in the work of preparing for the second coming of our Lord, but heaven is blessing the good scientists and physicians of the world with more knowledge. If only we would all acknowledge where the good things come from.
A great time to be alive.
The photo wouldn't copy Finally Utah is getting interested in Amyloidosis. The Huntmans program will work to make University of Utah a center of excellence. In all, it is pretty amazing that 4 years ago when I was diagnosed there wasn't much knowledge, awareness or interest at that time about Amyloidosis. Most of the Centers of Excellence are in the East. Criteria are:
1. Must have organ specialists on board
2. Have capability to do organ transplants if necessary
3. Have unit and support for patients
4. Ability to do stem cell transplantation
5. Treat a certain number of patients each year.
I hope the valley will ovecome political issues and support this. It sounds like they have brought in new physicians who have good experience with Amyloidosis.
The other really neat thing is that there will be support group meetings in Utah now!! I can visit Lindsay and Stan but not have to have Lindsay haul me to the support group meeting.
Not only is there hastening of the work in the work of preparing for the second coming of our Lord, but heaven is blessing the good scientists and physicians of the world with more knowledge. If only we would all acknowledge where the good things come from.
A great time to be alive.
Saturday, March 14, 2015
Goals achieved!
When I left the LDS hospital Sept 2011 I wanted to accomplish 2 main goals.
1. Increase awareness about Amyloidosis and educate physicians and patients about the disease and symptoms to help with earlier diagnosis. As with all rare diseases, early diagnosis is critical, even life saving. I have been teaching everyone I run into about my disease. I even held a candle lighting for Rare Disease Day in 2013 in our park which was covered by a local newspaper.
2. Second goal was to start a support group for Amyloidosis in Utah since the closest one is in Denver. Denver has worked only because Lindsay and Stan live there and Lindsay is kind enough to drive me around and go to the support group with me. I was contacted by the founder of the Worldwide Online Amyloidosis Support group, Muriel Finkle . She said Huntsman had contacted her and want a support group in Salt Lake City Utah. I had left my cards with them, with LDS BMT and with physicians of mine in Logan and Salt Lake. I am thrilled to look forward to the first meeting on June 13.
I have noticed that this year has been the really normalizing year. I had PT to work with muscle fascia release which has given me a PAIN FREE life. I am able to exercise now. I am building my stamina. I feel normal mostly. My endurance and my lungs are still not up to par. When I look back 4 years, I would never ever of thought I would be this good now.
Life is so good. I have come to accept and truly enjoy a slower pace, more opportunities to visit people, look for daily chances to brighten a day. I and immersed in family history. I am trying to write my Grandfather and Grandmother Watterson's histories. What a treat to find out so many things about them. Oh, how I wish I had know them better. Along the way I have even learned new things about my sweet mother who has been gone 42 years. That's a long time to try and retain memories.
New Goals are to finish histories and update their parents histories. This is how we get to know and appreciate them. Long overdue.
1. Increase awareness about Amyloidosis and educate physicians and patients about the disease and symptoms to help with earlier diagnosis. As with all rare diseases, early diagnosis is critical, even life saving. I have been teaching everyone I run into about my disease. I even held a candle lighting for Rare Disease Day in 2013 in our park which was covered by a local newspaper.
2. Second goal was to start a support group for Amyloidosis in Utah since the closest one is in Denver. Denver has worked only because Lindsay and Stan live there and Lindsay is kind enough to drive me around and go to the support group with me. I was contacted by the founder of the Worldwide Online Amyloidosis Support group, Muriel Finkle . She said Huntsman had contacted her and want a support group in Salt Lake City Utah. I had left my cards with them, with LDS BMT and with physicians of mine in Logan and Salt Lake. I am thrilled to look forward to the first meeting on June 13.
I have noticed that this year has been the really normalizing year. I had PT to work with muscle fascia release which has given me a PAIN FREE life. I am able to exercise now. I am building my stamina. I feel normal mostly. My endurance and my lungs are still not up to par. When I look back 4 years, I would never ever of thought I would be this good now.
Life is so good. I have come to accept and truly enjoy a slower pace, more opportunities to visit people, look for daily chances to brighten a day. I and immersed in family history. I am trying to write my Grandfather and Grandmother Watterson's histories. What a treat to find out so many things about them. Oh, how I wish I had know them better. Along the way I have even learned new things about my sweet mother who has been gone 42 years. That's a long time to try and retain memories.
New Goals are to finish histories and update their parents histories. This is how we get to know and appreciate them. Long overdue.
Sunday, January 18, 2015
Bear One Another's Burdens
In June this year I will be coming upon my 4th year since stem cell transplant. At the time of transplant survival numbers like 2-5 years were tossed out. I often think back to the words that came to my mind prior to my stem cell transplant. "You will live but it will be a long hard road".
It has been an eventful road thus far. I have had multiple health issues connected to affects of the amyloidosis on my body. I feel like I may have tried out most of the complications that were possible. I have learned so very much. These problems have made it impossible for me to even think about working as a nurse. I have decided the problems have been a blessing in disguise. I was so passionate about my profession and loved working with the Dr's and staff that I did, that I would have pushed to go back if there were a possibility. There wasn't. Because of my challenges my life was directed to where I should be. I have adjusted to being at home. I love being at home now. I started physical therapy a few months ago which has improved my quality of life immensely. I am working on sewing projects. I read. I am available to talk to my children when they call. I am home when my husband comes home from work. I have a mostly clean house. I am available to serve others. I have a great life.
Recently I was contacted by a dear friend who she and her husband reached out to me in the early days of my diagnosis. They were a bright spot in my life and provided such strength. She told me her little sister was recently diagnosed with Primary Cardiac Amyloidosis. My diagnosis. My RARE diagnosis. She even lives within Cache Valley. It reaffirmed to me that the disease is missed or misdiagnosed more than it is rare. Another interesting fact is that Dr. Garg who I worked for was the physician who diagnosed it. She went in for a follow up colonoscopy. Dr. Garg is amazing but this really touched my heart that my dear Dr was instrumental in getting this patient to correct care. He has studied and learned so much about amyloidosis.
I was asked to call and speak to Kaye. As I spoke with her she shared her fears, and questions. I felt as if heaven had given me a gift opportunity to begin to give back some of the love and support that was given to me. I had flashbacks of the feelings I felt at the time I was first diagnosed. My heart ached for her. She was in a place that no one could really help her. We can offer verbal support, physical hugs and spiritual prayers, but she was on a section of road that only she could walk. The only one who could help had already walked that road and felt our pains and agonies. Jesus Christ could walk that road with her when no one else could.
I have spoken with Kaye a few times,offered some advice, loaned a wig did what little I could. The thought came to me," am I helping bear her burden?" I sure hope so. In those first days when I could remember how I felt my world had been tilted off it's axis and knew things would never be the same; feared about surviving and if I did, what would I be like? Feared of dying and leaving my family. As I remembered these thoughts I truly wished I could help carry some of her agony. Again, I was reminded someone had and would again as she reached out to Him. I can offer what I have to offer and just the fact that I actually know how she feels and have been through the treatment AND am still here, hopefully gives her hope.
I have been grateful for the medical connections I have because of my treatment. They came in handy to help her. Truly a blessing of me having been through this. She is preparing for stem cell transplant.
The last couple of weeks we were informed of a dear previous stake president who is fighting for his life against metatstatic liver cancer. His sweet wife has already fought and won two battles against breast cancer. I love this dear couple. Dave and I went to visit them. I told him, "why is it we wait until someone is sick before we tell them of the great influence they have had on our lives and how much we love them?" I found myself reaching out to hold his hand to hopefully let the great love I felt transfer physically from me to him. I believe in the importance of touch, especially when someone is ill. After visiting with him, as I bent to hug him gently, with tears in my eyes, I found my hand resting on his temple and whispered into his ear how much I loved him and would pray for him. I could see him respond. As I hugged his wife, I could sense a strength in her. She was receiving strength and yet they were both so grateful for our short visit. I truly want to help bear their burdens.
Another friend was recently diagnosed with CLL (leukemia) and lymphoma. He is younger than me. His wife is a friend of mine and a fellow nurse. I prayed and wondered how I could possibly help them. One evening as I was driving home and passed their house I felt a deep need to stop right now. Dave wasn't with me and he really wanted to come visit but I needed to stop now. The thought came to me that I had been down a similar road, that I had something to offer. I just wasn't sure what it was other than to encourage to have hope and seek the Lord. They are a very religious family so I was certain they already had. As I rang the doorbell the wife answered. She took me into their front room and for the next 45 minutes just talked and asked me questions. She said, " I am a nurse. We are insured and yet I don't know where to go. I don't feel like we are getting the help we need." As we visited thoughts were brought to mind about where and how they could get care. It is amazing how difficult it is to get to out of town doctors. You need a referral and sometimes local Drs aren't willing to send you. I learned early in my illness to not worry about hurting doctors feelings. Not purposely; but to insist on getting second opinions and keeping copies of all tests and visits.
As I spoke with Michael later, I felt to tell him, "you can never ask for too many priesthood blessings. I learned this along my journey. I felt a special feeling for the picture of the Savior at the door knocking, and the door has no doorknob. I KNOW He is always there. He is willing to answer whenever we knock. He will wait for us to use our agency to ask, but He is there." Michael told me he had had a priesthood blessing from his son and in it he was told to "not hesitate to knock." He like me is very independent and it is extremely hard to as for help. As I left I hoped that somehow I was helping bear his burden.
I have had these people and others on my mind and heart. Perhaps they are also part of the reason I was allowed to stay. So I could learn more of charity. To be more of the person I need to be to face the Savior worthily.
The past year my oldest daughter has been having multiple tries with invitro. Just last November was the final try. The have shattered hearts they are trying to heal but then want to adopt. I was so grateful I have been here to be with her through this extremely difficult experience.
I have a son who recently bought a house. I was there.
Our youngest daughter needed my help specifically with searching for employment this past year. I was there. Tender mercies flowed.
My husband and I are so much closer since my illness.
I now have 2 beautiful grandchildren, Ellie and Sophie and I am here to enjoy their little arms around my neck and the "I love you Grandma Sue." or "you are the best gnama".
My life has been a hard road these past years, but when I look at the blessings that have come to me they over shadow the hard times.
If we could only keep in mind as we are trying to live through our difficult trials that we are never alone. A loving Savior is right there. This is a time in our life that we can improve our relationship with Him because we are more humble. There will be so many things we will learn going through these trials and we need to keep our eyes open for those things as well as the tender mercies that will come. We just may learn some things that will help us bear one anothers burdens.
It has been an eventful road thus far. I have had multiple health issues connected to affects of the amyloidosis on my body. I feel like I may have tried out most of the complications that were possible. I have learned so very much. These problems have made it impossible for me to even think about working as a nurse. I have decided the problems have been a blessing in disguise. I was so passionate about my profession and loved working with the Dr's and staff that I did, that I would have pushed to go back if there were a possibility. There wasn't. Because of my challenges my life was directed to where I should be. I have adjusted to being at home. I love being at home now. I started physical therapy a few months ago which has improved my quality of life immensely. I am working on sewing projects. I read. I am available to talk to my children when they call. I am home when my husband comes home from work. I have a mostly clean house. I am available to serve others. I have a great life.
Recently I was contacted by a dear friend who she and her husband reached out to me in the early days of my diagnosis. They were a bright spot in my life and provided such strength. She told me her little sister was recently diagnosed with Primary Cardiac Amyloidosis. My diagnosis. My RARE diagnosis. She even lives within Cache Valley. It reaffirmed to me that the disease is missed or misdiagnosed more than it is rare. Another interesting fact is that Dr. Garg who I worked for was the physician who diagnosed it. She went in for a follow up colonoscopy. Dr. Garg is amazing but this really touched my heart that my dear Dr was instrumental in getting this patient to correct care. He has studied and learned so much about amyloidosis.
I was asked to call and speak to Kaye. As I spoke with her she shared her fears, and questions. I felt as if heaven had given me a gift opportunity to begin to give back some of the love and support that was given to me. I had flashbacks of the feelings I felt at the time I was first diagnosed. My heart ached for her. She was in a place that no one could really help her. We can offer verbal support, physical hugs and spiritual prayers, but she was on a section of road that only she could walk. The only one who could help had already walked that road and felt our pains and agonies. Jesus Christ could walk that road with her when no one else could.
I have spoken with Kaye a few times,offered some advice, loaned a wig did what little I could. The thought came to me," am I helping bear her burden?" I sure hope so. In those first days when I could remember how I felt my world had been tilted off it's axis and knew things would never be the same; feared about surviving and if I did, what would I be like? Feared of dying and leaving my family. As I remembered these thoughts I truly wished I could help carry some of her agony. Again, I was reminded someone had and would again as she reached out to Him. I can offer what I have to offer and just the fact that I actually know how she feels and have been through the treatment AND am still here, hopefully gives her hope.
I have been grateful for the medical connections I have because of my treatment. They came in handy to help her. Truly a blessing of me having been through this. She is preparing for stem cell transplant.
The last couple of weeks we were informed of a dear previous stake president who is fighting for his life against metatstatic liver cancer. His sweet wife has already fought and won two battles against breast cancer. I love this dear couple. Dave and I went to visit them. I told him, "why is it we wait until someone is sick before we tell them of the great influence they have had on our lives and how much we love them?" I found myself reaching out to hold his hand to hopefully let the great love I felt transfer physically from me to him. I believe in the importance of touch, especially when someone is ill. After visiting with him, as I bent to hug him gently, with tears in my eyes, I found my hand resting on his temple and whispered into his ear how much I loved him and would pray for him. I could see him respond. As I hugged his wife, I could sense a strength in her. She was receiving strength and yet they were both so grateful for our short visit. I truly want to help bear their burdens.
Another friend was recently diagnosed with CLL (leukemia) and lymphoma. He is younger than me. His wife is a friend of mine and a fellow nurse. I prayed and wondered how I could possibly help them. One evening as I was driving home and passed their house I felt a deep need to stop right now. Dave wasn't with me and he really wanted to come visit but I needed to stop now. The thought came to me that I had been down a similar road, that I had something to offer. I just wasn't sure what it was other than to encourage to have hope and seek the Lord. They are a very religious family so I was certain they already had. As I rang the doorbell the wife answered. She took me into their front room and for the next 45 minutes just talked and asked me questions. She said, " I am a nurse. We are insured and yet I don't know where to go. I don't feel like we are getting the help we need." As we visited thoughts were brought to mind about where and how they could get care. It is amazing how difficult it is to get to out of town doctors. You need a referral and sometimes local Drs aren't willing to send you. I learned early in my illness to not worry about hurting doctors feelings. Not purposely; but to insist on getting second opinions and keeping copies of all tests and visits.
As I spoke with Michael later, I felt to tell him, "you can never ask for too many priesthood blessings. I learned this along my journey. I felt a special feeling for the picture of the Savior at the door knocking, and the door has no doorknob. I KNOW He is always there. He is willing to answer whenever we knock. He will wait for us to use our agency to ask, but He is there." Michael told me he had had a priesthood blessing from his son and in it he was told to "not hesitate to knock." He like me is very independent and it is extremely hard to as for help. As I left I hoped that somehow I was helping bear his burden.
I have had these people and others on my mind and heart. Perhaps they are also part of the reason I was allowed to stay. So I could learn more of charity. To be more of the person I need to be to face the Savior worthily.
The past year my oldest daughter has been having multiple tries with invitro. Just last November was the final try. The have shattered hearts they are trying to heal but then want to adopt. I was so grateful I have been here to be with her through this extremely difficult experience.
I have a son who recently bought a house. I was there.
Our youngest daughter needed my help specifically with searching for employment this past year. I was there. Tender mercies flowed.
My husband and I are so much closer since my illness.
I now have 2 beautiful grandchildren, Ellie and Sophie and I am here to enjoy their little arms around my neck and the "I love you Grandma Sue." or "you are the best gnama".
My life has been a hard road these past years, but when I look at the blessings that have come to me they over shadow the hard times.
If we could only keep in mind as we are trying to live through our difficult trials that we are never alone. A loving Savior is right there. This is a time in our life that we can improve our relationship with Him because we are more humble. There will be so many things we will learn going through these trials and we need to keep our eyes open for those things as well as the tender mercies that will come. We just may learn some things that will help us bear one anothers burdens.
Friday, September 27, 2013
Word for the week, Love
The past week I have felt "normal". Well, if I even know what normal is. I have been on Prednisone for about 3 weeks because of an asthma type flare. I had some nasty side affects. I have been tapering the dose now for about a week ago, I bought new B12 sublingual tablets and bought a higher dose than I had been on. I have had so much energy and NO back or bone pain. All I can say is WOW!!
I have cleaned the freezers, cleaned my closet, cleaned and organized my drawers and not be exhausted.
For almost 3 years I have felt pretty crumby. Sometimes, outright terrible. It has been 26 months since my stem cell transplant. Every month or more often, I have been ill. Pain has been a constant in my life until this week. I think everyday how very blessed I am that I don't hurt. I also thought today how very blessed I am that I can get into a car and drive where I want to. There was a time not so very long ago, I was totally dependent on others. What a humbling experience. I think of others with chronic disease, aging, or whatever the circumstances are that make them dependent. It is a horrible feeling. Do others even think of how blessed they are as they "have to go to work", or "have to clean the house" or "have to drive their children somewhere" and then are able to do it?
My mind has been so busy thinking of all the wonderful blessings in my life but at the top is life itself and now, feeling good. I have thought of the different health challenges I have faced and still think it's pretty ironic that I have experienced so many and I have been a nurse for so long. It is like Heavenly Father prepared me over the years in my nursing for this period of my life look at the challenges my children face and as a mother my heart aches. Then I have to think of the many wonderful things I have learned along the way these past 3 years. For every pain or challenge, I truly believe that I have been double blessed. Sometimes blessings are very subtle and unless we daily evaluate our lives, we may miss those tender mercies. Mine have been for the most part very obvious.
I was able to spend time in Salt Lake last night with my brother and his wife and some other extended family members. Ken and RoLayne are on their way to the mission field. I was reminded of our childhood, our parents and all the love we had in our home. I then spent the night at Eric and Lisa's house with Ellie and Sophie. Again, the word love came to mind. My heart melts with those little girls. As I was putting my things on the guest bed, Ellie was standing there wiggling and then she burst out with " I am just sooo happy," and then wrapped her 2 1/2 year old arms around me. Then a couple of minutes later she said, "Grandma, I love you so much!" As a mother, I thought I understood love. Now as a Grandmother I am learning love only gets deeper. I couldn't help but think how very much I love my children and those grand daughters, it must seem so immature compared to the love our Father in Heaven has for us. The kind of love we are to have for Him and everyone.
I thought last Sunday as I said hello to a young man who doesn't usually come to church, how much I appreciate people speaking to my son who doesn't often attend church. I thought to myself, the bishopric doesn't even come say hello. Then I thought again, "It isn't the Bishopric's responsibility, It is ours!!" If we would just love everyone around us as we love our own family and would hope that people around them, love them; life would be so good. This thought has stayed with me all week. What can I do? Who needs a hello? I am a hugger, so I hug everyone. I finally decided that all of us need to be acknowledged, said hello to. Be a friend to everyone. Smile. Look around specifically and keep a pray in our heart that we may be prompted to know who needs that extra love. I love the phrase, "It takes a village to raise a child":.
As Ellie knelt by her bed, her Dad asked her if she wanted to show Grandma how she can pray all by herself. She opened the prayer and next out of her mouth was, "Thankful Grandma Sue is here," then she blessed me, Grandma and Grandpa B and each of her family members. What a sweet straight from the heart of a 2 1/2 year old child. I could imagine the heart of our Lord melting too as mine did. He showed us multiple times how important little children are to Him and how much He loves them.
Grandpa Dave and I gave Ellie a big wheels to ride. Her Dad put it together and I started to put the decals on it. I thought I should wait and let Ellie be a part of that. This morning I was sitting on the floor and looking at the instructions seeing where the decals went. Ellie walked over and put her arm around my neck and looked at the paper too. I showed her that some decals could go "right there" on the big wheels but told her to put them anywhere she wanted. She put them on carefully and then picked up the instructions looking at it said,"Let's see where this one goes" and looked carefully at the instructions. Ellie won't be 3 until Jan 2014. She knows all her colors, shapes, numbers. She can spell her name. She is trying to figure out on her own what letter words begin with. She recognizes Jesus, Pres. Monson and the other first presidency. She calls temples Jesus' house. She knows alot of the characters of the Book of Mormon. She remembers everything. She will remember and talk about things several months ago in detail. Her little sister Sophie is 10 months old and trying to talk and keep up with Ellie. When I hear about the work of the Gospel of Jesus Christ hastening and our responsibilities to do our part in family history, training youth, missionary work; I feel the strength of these special spirits coming into the world right now. Yes, my son and his wife are wonderful parents and teach very well, but these spirits are the "warriors" in my opinion. The strongest, most stubborn at times, strong willed, bright, and valiant.
I think of the wonderful life I have. Yes I have a terrible disease that could reactivate and kill me, but I know that. I try diligently to live my life with the proper perspective. Before my illness, I seemed to be like the rat on the wheel running and going nowhere sometimes and not always having my priorities or perspective right. I also realize how strong my love and testimony of the Savior has become. Would I ask for this disease? NO, but would I trade and go back and not have lived the experiences of the past 3 years? NO. When we try our hardest through trials and look for what we are to learn and try to grow, I know we are slowly becoming the individuals we have the capacity to be... Sons and daughters of an omnipotent, loving Father and Mother.
I have cleaned the freezers, cleaned my closet, cleaned and organized my drawers and not be exhausted.
For almost 3 years I have felt pretty crumby. Sometimes, outright terrible. It has been 26 months since my stem cell transplant. Every month or more often, I have been ill. Pain has been a constant in my life until this week. I think everyday how very blessed I am that I don't hurt. I also thought today how very blessed I am that I can get into a car and drive where I want to. There was a time not so very long ago, I was totally dependent on others. What a humbling experience. I think of others with chronic disease, aging, or whatever the circumstances are that make them dependent. It is a horrible feeling. Do others even think of how blessed they are as they "have to go to work", or "have to clean the house" or "have to drive their children somewhere" and then are able to do it?
My mind has been so busy thinking of all the wonderful blessings in my life but at the top is life itself and now, feeling good. I have thought of the different health challenges I have faced and still think it's pretty ironic that I have experienced so many and I have been a nurse for so long. It is like Heavenly Father prepared me over the years in my nursing for this period of my life look at the challenges my children face and as a mother my heart aches. Then I have to think of the many wonderful things I have learned along the way these past 3 years. For every pain or challenge, I truly believe that I have been double blessed. Sometimes blessings are very subtle and unless we daily evaluate our lives, we may miss those tender mercies. Mine have been for the most part very obvious.
I was able to spend time in Salt Lake last night with my brother and his wife and some other extended family members. Ken and RoLayne are on their way to the mission field. I was reminded of our childhood, our parents and all the love we had in our home. I then spent the night at Eric and Lisa's house with Ellie and Sophie. Again, the word love came to mind. My heart melts with those little girls. As I was putting my things on the guest bed, Ellie was standing there wiggling and then she burst out with " I am just sooo happy," and then wrapped her 2 1/2 year old arms around me. Then a couple of minutes later she said, "Grandma, I love you so much!" As a mother, I thought I understood love. Now as a Grandmother I am learning love only gets deeper. I couldn't help but think how very much I love my children and those grand daughters, it must seem so immature compared to the love our Father in Heaven has for us. The kind of love we are to have for Him and everyone.
I thought last Sunday as I said hello to a young man who doesn't usually come to church, how much I appreciate people speaking to my son who doesn't often attend church. I thought to myself, the bishopric doesn't even come say hello. Then I thought again, "It isn't the Bishopric's responsibility, It is ours!!" If we would just love everyone around us as we love our own family and would hope that people around them, love them; life would be so good. This thought has stayed with me all week. What can I do? Who needs a hello? I am a hugger, so I hug everyone. I finally decided that all of us need to be acknowledged, said hello to. Be a friend to everyone. Smile. Look around specifically and keep a pray in our heart that we may be prompted to know who needs that extra love. I love the phrase, "It takes a village to raise a child":.
As Ellie knelt by her bed, her Dad asked her if she wanted to show Grandma how she can pray all by herself. She opened the prayer and next out of her mouth was, "Thankful Grandma Sue is here," then she blessed me, Grandma and Grandpa B and each of her family members. What a sweet straight from the heart of a 2 1/2 year old child. I could imagine the heart of our Lord melting too as mine did. He showed us multiple times how important little children are to Him and how much He loves them.
Grandpa Dave and I gave Ellie a big wheels to ride. Her Dad put it together and I started to put the decals on it. I thought I should wait and let Ellie be a part of that. This morning I was sitting on the floor and looking at the instructions seeing where the decals went. Ellie walked over and put her arm around my neck and looked at the paper too. I showed her that some decals could go "right there" on the big wheels but told her to put them anywhere she wanted. She put them on carefully and then picked up the instructions looking at it said,"Let's see where this one goes" and looked carefully at the instructions. Ellie won't be 3 until Jan 2014. She knows all her colors, shapes, numbers. She can spell her name. She is trying to figure out on her own what letter words begin with. She recognizes Jesus, Pres. Monson and the other first presidency. She calls temples Jesus' house. She knows alot of the characters of the Book of Mormon. She remembers everything. She will remember and talk about things several months ago in detail. Her little sister Sophie is 10 months old and trying to talk and keep up with Ellie. When I hear about the work of the Gospel of Jesus Christ hastening and our responsibilities to do our part in family history, training youth, missionary work; I feel the strength of these special spirits coming into the world right now. Yes, my son and his wife are wonderful parents and teach very well, but these spirits are the "warriors" in my opinion. The strongest, most stubborn at times, strong willed, bright, and valiant.
I think of the wonderful life I have. Yes I have a terrible disease that could reactivate and kill me, but I know that. I try diligently to live my life with the proper perspective. Before my illness, I seemed to be like the rat on the wheel running and going nowhere sometimes and not always having my priorities or perspective right. I also realize how strong my love and testimony of the Savior has become. Would I ask for this disease? NO, but would I trade and go back and not have lived the experiences of the past 3 years? NO. When we try our hardest through trials and look for what we are to learn and try to grow, I know we are slowly becoming the individuals we have the capacity to be... Sons and daughters of an omnipotent, loving Father and Mother.
Thursday, May 2, 2013
Spring 2013
Spring has finally arrived in Paradise. I feel like Spring is arriving in my life after a long cold winter.
I am finding that I have graduated from the baby step program. I am actually planning ahead now. In one instance I am planning 3 years ahead.
To celebrate my 2 year old new birthday in June (from my transplant) I am trying to gather small gifts and go visit the LDS Bone Marrow Unit and share these gifts with the patients there. There is so much sadness there. Not everyone gets to go home. Everyone is so sick and families so stressed. To try and bring just a little smile for the day would be the best!! My long range goal is that at 5 years out from my stem cell transplant, I would like to have made enough fleece blankets to take and pass around. I really have graduated from the baby step program. I am so glad that I had seen that silly movie, What About Bob, so that I knew about the baby step program. Sometimes life is too hard to think beyond a few minutes, a few hours or even one day. Better understanding about the concept of us learning "line upon line" has come to me. The phrase, "strength for the day" I had heard many times when someone offered prayers and I better understand that now too.
I feel that everyday I am improving a tiny bit. If you look at all those tiny bits I am doing very well. It is a very long, slow process to improve with Amyloidosis. Some people do better than others. I think I have been given extra challenges to help me. I am still striving to learn what it is I am to learn from each challenge that comes along.
I met a sweet lady in Hyrum in the grocery store the other day. Our lives had intertwined several times over the years. She asked me exactly what was wrong with me. ( Now that is a loaded question) I explained briefly about Amyloidosis. She said, "Well, you know the whole town of Paradise was praying and supporting you. Not just your ward but the whole town."
It humbles me every time I think of the tremendous support I did receive. Just me, little old Linda, had the heavens open and pour out tremendous blessing upon me because of the faithful family members and friends who prayed for me. Sometimes it was members of a family member's family.
I know that I literally felt the power of those prayers. So much kindness and service in our behalf.
Just as the leaves on the trees are beginning to burst forth and the flowers bud out, I feel like I am just beginning to grow and be what it I should be after all these years of mortality.The Lord knows who I am and what I am capable of. I am so grateful that I know that I am His daughter, that He loves me as well as all of His children. I am learning how to truly walk by faith.
I am finding that I have graduated from the baby step program. I am actually planning ahead now. In one instance I am planning 3 years ahead.
To celebrate my 2 year old new birthday in June (from my transplant) I am trying to gather small gifts and go visit the LDS Bone Marrow Unit and share these gifts with the patients there. There is so much sadness there. Not everyone gets to go home. Everyone is so sick and families so stressed. To try and bring just a little smile for the day would be the best!! My long range goal is that at 5 years out from my stem cell transplant, I would like to have made enough fleece blankets to take and pass around. I really have graduated from the baby step program. I am so glad that I had seen that silly movie, What About Bob, so that I knew about the baby step program. Sometimes life is too hard to think beyond a few minutes, a few hours or even one day. Better understanding about the concept of us learning "line upon line" has come to me. The phrase, "strength for the day" I had heard many times when someone offered prayers and I better understand that now too.
I feel that everyday I am improving a tiny bit. If you look at all those tiny bits I am doing very well. It is a very long, slow process to improve with Amyloidosis. Some people do better than others. I think I have been given extra challenges to help me. I am still striving to learn what it is I am to learn from each challenge that comes along.
I met a sweet lady in Hyrum in the grocery store the other day. Our lives had intertwined several times over the years. She asked me exactly what was wrong with me. ( Now that is a loaded question) I explained briefly about Amyloidosis. She said, "Well, you know the whole town of Paradise was praying and supporting you. Not just your ward but the whole town."
It humbles me every time I think of the tremendous support I did receive. Just me, little old Linda, had the heavens open and pour out tremendous blessing upon me because of the faithful family members and friends who prayed for me. Sometimes it was members of a family member's family.
I know that I literally felt the power of those prayers. So much kindness and service in our behalf.
Just as the leaves on the trees are beginning to burst forth and the flowers bud out, I feel like I am just beginning to grow and be what it I should be after all these years of mortality.The Lord knows who I am and what I am capable of. I am so grateful that I know that I am His daughter, that He loves me as well as all of His children. I am learning how to truly walk by faith.
Wednesday, August 8, 2012
What a difference a year makes
One year ago this week, I was in LDS hospital. I was bald, barely over 100 pounds. My heart was having a hard time staying in a normal rhythm and my kidneys had gone to sleep and quit working. It was a pretty stressful time for my family. It's interesting because I was so medicated, toxic in fact, because the kidneys weren't working. My memories include horrible nightmares which I remember with clarity to this day. But I also remember the tender mercies of the Lord. His allowing angels to attend me for several nights. I also had my children at my bedside. Interesting enough, this is such a pleasant, happy memory; even though I was so very sick.
I remember dreading the physical therapist coming in to try and get me out of bed. I had to relearn to walk and I was still in terrible pain with my back. All of the staff were so patient but persistent with me.
Now a year later, just looking at me you see so very many blessings. I have a wonderful head of hair. Better than it was before my chemo and stem cell transplant. I don't have terrible back pain. It gets tired and hurts if I do certain things but nothing like a year ago. I am fat and happy again. My taste buds work. My heart and kidneys have had some improvement which is surprising to the BMT folks.
In September I will have more blood tests done to check on the activity of the disease. I'm thinking they will all come back great, but even if they don't I am still a walking miracle. I have had another year. I have enjoyed such happy times with my family and my little granddaughter Ellie. Life is good. I am at peace. I have a stronger testimony of the great love our Savior and Heavenly Father has for us. I know that He is very aware of each one of us and of our struggles and fears. He carries us along when we can't do it any longer on our own. I literally felt Him do that for me.
I have the intense desire to be good and to try and help others. I have no ill feelings towards anyone. I am enjoying every single day as a gift, realizing that life can be cut short. I am trying to avoid getting caught up in the "distractions' of life that can affect our perspectives. I am trying to focus on what will matter eternally, not the pressing matters of the day.
I have been blessed to have continued troubles that have kept me disabled. We have health insurance coverage at affordable rates because of this. I think somedays I would rather just feel competely great, but then I look at the blessings of continued challenges.
I am so grateful for parents who taught me to look at life optimistically. My Dad had the most positive attitude of anyone I have ever met. My Mother was the most service oriented person. I only got 19 years with her but she made a lifetime impression on my life. I am so very grateful that I was able to have them near me, supporting me during my tough time last year. Love transcends the veil.
I am not sure what this next year will bring. I know it will involve surgery. I think of what Nephi said, "I will go and do....." I know the Lord will be by my side each and every day. With His help I can do whatever I have to. My life is in His hands. I am just so very grateful to be alive.
This past year has been a blessing in my and my family's lives. We have learned to rely more on the Lord and we have grown closer. Yes, what a difference a year makes!
I remember dreading the physical therapist coming in to try and get me out of bed. I had to relearn to walk and I was still in terrible pain with my back. All of the staff were so patient but persistent with me.
Now a year later, just looking at me you see so very many blessings. I have a wonderful head of hair. Better than it was before my chemo and stem cell transplant. I don't have terrible back pain. It gets tired and hurts if I do certain things but nothing like a year ago. I am fat and happy again. My taste buds work. My heart and kidneys have had some improvement which is surprising to the BMT folks.
In September I will have more blood tests done to check on the activity of the disease. I'm thinking they will all come back great, but even if they don't I am still a walking miracle. I have had another year. I have enjoyed such happy times with my family and my little granddaughter Ellie. Life is good. I am at peace. I have a stronger testimony of the great love our Savior and Heavenly Father has for us. I know that He is very aware of each one of us and of our struggles and fears. He carries us along when we can't do it any longer on our own. I literally felt Him do that for me.
I have the intense desire to be good and to try and help others. I have no ill feelings towards anyone. I am enjoying every single day as a gift, realizing that life can be cut short. I am trying to avoid getting caught up in the "distractions' of life that can affect our perspectives. I am trying to focus on what will matter eternally, not the pressing matters of the day.
I have been blessed to have continued troubles that have kept me disabled. We have health insurance coverage at affordable rates because of this. I think somedays I would rather just feel competely great, but then I look at the blessings of continued challenges.
I am so grateful for parents who taught me to look at life optimistically. My Dad had the most positive attitude of anyone I have ever met. My Mother was the most service oriented person. I only got 19 years with her but she made a lifetime impression on my life. I am so very grateful that I was able to have them near me, supporting me during my tough time last year. Love transcends the veil.
I am not sure what this next year will bring. I know it will involve surgery. I think of what Nephi said, "I will go and do....." I know the Lord will be by my side each and every day. With His help I can do whatever I have to. My life is in His hands. I am just so very grateful to be alive.
This past year has been a blessing in my and my family's lives. We have learned to rely more on the Lord and we have grown closer. Yes, what a difference a year makes!
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