Fire, then Light and the Promise of the Miraculous Gift
Journal posted on December 15, 2016
Life is pure chaos here. I have not posted for such a long time, but I think of you in so many ways, from the encouragement and care you shared with me through surgery and recovery and so much more.
There has been so much Chaos here lately that there are some things I just cannot remember clearly. We had a fire in our home that started at about 3 AM in a computer CPU Unit on Friday morning October 7th, Thank the Lord that Jim was home and reacts so quickly. Otherwise we probably would have lost so much more. In spite of the flames coming out of it, he pulled it out from the wall in our downstairs family room and into the middle of the floor. When the upstairs smoke alarm went off, it woke me out of a deep sleep in our room in the opposite corner of the house.
The fire started in our downstairs Family Room where Jim has all of the electronic equipment lines against the wall : TV, speakers, tuner, amplifier, several computers and screens as well as a reel to reel, DVD Player, then in the corner his home office with stacks of papers and stacks of DVDs, along with his dictating equipment.
As Jim was putting the fire out the CPU unit fell onto its side, lighting the carpet on fire. So after emptying two fire extinguishers, there was still burning carpet to contend with. Jim threw four bucketfuls of water on. now we had billowing smoke. I couldn't see more than 5 inches past my hand.
Smoke alarms and the security system were blaring. So grateful that we had them! The security company called. But the fire was thankfully out.
Now the billowing clouds of black, grey, and brown smoke enveloped the house. Yes, this is the cause of most fire deaths. We ran through the house opening wide all of the windows and doors. Then I scooped up Lacie, our cat, and ran for the window farthest from the fire's origin. We pulled in that great Kansas air. Early October, there was a cool mist and plenty of wind from the prairies. I don't even know how long we were there, but it was the safest place, without question, for Lacie, and probably for me, too..
By the time everything was done, most of the damage was from the toxic smoke. Sadly, although she struggled through and was looking pretty good, my favorite little shadow, often the only warm breathing being i would see for sometimes up to 72 hours, left this world. I miss her terribly.
So glad none of the kids were here.
We had a nice Thanksgiving at Elizabeth's and Jeremiah's.
From the early morning on Friday, October 7th to today, December 15th, we are still recovering. Our family room was gutted. Jim's little home office had been in one corner and all of our electronics and TV, audio, even his dictating equipment, were gone. Smoke damage that made everything irreparable.
Today the fire cleaning and restoration continue. The heating and A/C systems are getting a lot of attention. They are being cleaned almost the way a plumber cleans out clogged pipes, although no water is involved and they are running long twisting metal tubes that have a controller to rotate them in the ducts.
Next finish cleaning out the furnace and A/C and we will, for the first time in over 2 months, have clean air (toxin-free) throughout the house. We hope by the end of tomorrow they will have cleaned all the carpets on this main floor. We can then move furniture back and allow all of our family on this main floor.
The gate at the top of the stairs will remain closed not just for little Grand Blayne's safety, but also because our family room down the stairs is still gutted. Toxins are embedded in the drywall and ceiling. (The carpet and pad were gone by the second day after the fire. )
Jim and I have looked at carpeting. It won't be ready for Christmas, but we can visit and share gifts here. I am overjoyed!
Then we have to check out some furniture and start to move in some toys and play things, blankets and pillows. I can hardly wait!. I can tell you that during my five years with six major surgeries, someone was filling to the brim our downstairs with so many electrical gadgets and things that the kids and Grands and I had not even room to sit. Each year I have asked for the family room back. This was year six...
This year it is God Who is granting us room for family times watching our favorite teams play and cheer them on! I am waiting for the day when we can get another little furry animal to love, Our house will feel like home again and our family can be with us when they want to be.
We lost much, but the real loss was the living, breathing Lacie. Slowly the rest is coming together and we will be able to celebrate together the Miracle that happened 2000 years ago and lives on in our hearts. CHRISTmas will be here!
And it does not matter that not one package has been wrapped, or decorations have not even been found. For the Joy of this time of Year is a Joy of the Heart -- and How we have learned to love and appreciate our Hearts, and our Heart Family with so many Heart Brothers and Sisters.
Elizabeth brought a wreath for the front of our home and Jim immediately hung it. I'm praying that Autumn's birds will come back and build a nest in it for her this year. What a touching gift that would be - new life to celebrate our New Lives!
I love you deeply, my sister Terrie, my first Heart Sister, and Eleanor and so many more, and Brothers Tony and all! And I wish all the joys and fellowship and love of the season to live on in each of your hearts all the year through!
And Merry Christmas Heart Family, Brothers and Sisters, Every One! <3
Seven years ago to the day yesterday my beloved Dad's spirit broke the bonds of this Earth and headed Home. We were celebrating because the few days leading up to it were extremely uncomfortable for Dad. Since he lived in Denver, my sisters and I did our best as a winter ice storm nearly prevented my twin sister and me from getting planes. But we landed in Denver within 15 minutes of each other and picked up a four wheel drive to Dad's home there. Our younger sister Beth was coming from her home in Phoenix, and we thought that trip would be a breeze. Not so as the winter in the rest of the country was preventing planes from leaving and even getting to Phoenix let alone taking travelers out.
But we were blessed. As Dad was slipping away the sun went down and we turned on just a small bedside lamp. We were singing carols and Christmas songs, and I finally suggested that we sing "I'll be home for Christmas". There was not a dry eye in the room by the end of that song. Then Dad went to his real Home, no more tears, no discomforts. He had given us instructions so it was nice knowing what he wanted.
Flash forward seven years to yesterday. My Dad's only sister, Virginia, my Aunt Ginny after whom I was named, was dying in Philadelphia. Our double cousin Garrett had been on top of things and was instrumental in orchestrating all of the moves and doctors since Aunt Ginny was found to be unable to live in her home alone quite a number of years ago. She had her 94th birthday on Dec 2, but Garrett told us he thought she was "holding on -- waiting". Sure enough, on the exact date that her brother, our Dad, had gone Home Aunt Ginny left this world and went to join him. She passed early in the morning. We are all very close, so there was a lot of texting throughout and into the day. We finally decided to toast those of our family who have gone before us, and a time was set for 9 PM EST. Since at least one of us lives in each time zone across the contiguous United States, we set our clocks and had a national family toast last night. How great to think that our Grandmother and Papa were able to have a reunion with both Dad and Aunt Ginny. And each of us had a sister already in Heaven. Must have been quite a celebration.
For our particular family, that was the end of a generation on Earth. Garrett is now the head of the family, and the title befits him. He is wise, intelligent, strong, loving, and a good communicator. He will hold up the strong moral values and integrity and faith that are part of what binds us together.
Today after some morning attention to the passing yesterday, I turned toward doing some of the things that will bring my own small part of the family a joy-filled Christmas and holidays.
For us now, while it could be say that each of us is in the process of dying each day, no one that we are aware of has a death that is imminent. Our blessed aunt and mother is out of her pain.
It is time for us to live in the moment and appreciate each one for what it is.
I am indebted to this heart community; I am in my 17th month since my heart valve replacement and, while other health issues do require some attention, I am so grateful to be where I am today.
So Merry Christmas or whatever holiday you choose to celebrate in honor of Who you serve. May you stay strong or get strong and keep working at it. This is a very courageous community, although none of us chose to be. May you be enveloped with joy and may it continue to richly bless you throughout 2016...
Autumn has been telling us for a few weeks now that she will be TWO! And she proudly demonstrates by holding up two of her fingers. I laugh because rarely does she hold up the same two fingers! Showing off her creative versatility. Momma had a conference in Tennessee on the big day. Daddy immediately grasped the need for the three of them to be together for the Big Day. Bless him - he took on a number of additional shifts at the fire station so the family could drive to Nashville and back! No small drive.
Before they left town all three came over for a short visit. Ahhhh! Packages!!! Autumn immediately ran over and, taking hold of the pink with cupcakes paper at the top of the box, turned and pulled the swath of paper until it was no longer attached to the box. Smiles of pure joy! Daddy helped her with the rest of the big box, and soon a Big Girl's Car Seat appeared! No lying looking backwards for the Tennessee trip. Autumn's long legs would not be up on the top of the backseat! She would sit higher and could see and talk with Momma and Daddy from the middle of the back seat! Squeals and joyful faces as she tested it. Pretty soon Daddy and Granddaddy would take it out and install it.
But there were a few other packages.....hmmmm! Out came some size 2T pajamas with owls on them. Next was a board book all sparkly! Autumn climbed into my lap and I told her she knew all the words! So we sang Twinkle Twinkle Little Star as the pages were turned. A keeper! The last item pulled out was the little Golden Book of Snow White and the Seven Dwarfs! "Snow White!"Autumn exclaimed. Autumn knows about Snow White from the fancy plate, bowl, silverware and talk pink sipper cup her Aunt Terrie (S in California) had given her. Autumn knew the characters, but had not yet heard the story. Two year old and book made a beeline for Granna's lap! This was no time to sit quietly. As each page was turned a little finger pointed to the new picture. "Who's that?!?"was the repeated question. Sometimes I would tell her who this new character was. But just as often I would repeat,"Who IS that?" Immediately Autumn would proudly say, "Snow White!" Such fun! And through this book, Grandma Miller was quietly taking a video of all the action. It was forwarded to Grandpa Miller at home in Missouri soon after.
Then out to the car to install the new seat, and for the first time Autumn could see and wave as they headed towards home! Happy Second Birthday to the Child of God who brings sunshine into my life with each visit! Best cardiac rehab a Granna could ever ask for! And thanks to Jeremiah and Elizabeth who are gracious parents and make sure we have time to love and learn and laugh and eat and bathe and even put Autumn to bed in our home when they are both working. God has richly blessed us and we honor Him and pray together on our special nights!
Happy One Year to My Precious Sister, Terrie Syvertsen!
Journal posted on August 20, 2015
Terrie was one of the first people I met on this site well over a year ago. We have really bonded and now celebrate family events together. I cannot possibly do justice in thanking Terrie for opening her heart well before surgery and sharing wisdom and experience as our Heath became more precarious, then thankfully stronger and healthier.
Terrie is the person who really opened my eyes to seeing that not all I was going through was not from the traumatic brain injury - much of it was due to my heart's condition, at the critical stage by the time surgery occurred. It was a huge gift, as it made me see that I was not going through the surgery with little hope of improvement in my life to recognizing that my quality of life really should (and has!) improve. God Bless this wonderful, insightful, compassionate, and sharing strong woman we know as Terrie! ❤️🌹🌹🌹 Please watch over her and keep her safe and continue to improve her health. Guard her with Your vast army of Angels! 👼👼🏼👼🏼👼🏼👼🏼👼🏼👼🏼👼🏽👼🏾👼🏻
We celebrate you, Terrie, for your constant, tireless giving to this special Heart Family, for without question, Family is who we are! 🎉🎊💗🎈❤️🌹🌹🌻🎆💥❗️
Granna with our Grand Autumn Grace at Easter 2015.
The Wonder of One Year! - My Heart is Full of Gratitude
Journal posted on July 31, 2015
At this very moment last year I was in the operating room having my bicuspid aortic valve, which was in the critical category of stenosis - 0.52 cm2, replaced. I am feeling so much better and have so many people to thank. This Heart Family was here for me every minute and answered so many questions that my fear evaporated bit by bit.! Yes, Knowledge is the great enemy of Fear, and I was blessed to have so many people who cared enough to really pray for me. I am thankful that the Lord led us to a place (Cleveland Clinic) and found us a great surgeon, Dr. Lars Svensson, whose knowledge and care and expertise were exactly what a patient who is post TBI (traumatic brain injury) like me really needs.
I was blessed to be in learned and caring hands, starting with my amazing FP, Dr. Terry Merrifield, and my cardiologist, Dr. Murphy, who knew when it was the right time and outlined the parameters of how to find the "right" heart valve center and surgeon.
Bless Jan C and Jan B and Rhonda Mann and Stacy who lovingly helped me organize and pack as I was having Achilles' problems - I would have been ill prepared without you and your generous gifts of time and effort! And always there for me were my Farley sisters, Lynnie and Patty and Beth, who spent time in many ways helping me identify what needed to and could be done to prepare the house for post-op safety and welcome - you "PODners" as Lynnie would say, moved me from tears to laughter, Beth taking all that poured out in a gush of anguish and identifying my greatest wish - to be able to see ALL of my family safely and comfortably, including our precious Autumn Grace, my Grand. Then finding a solution -- no easy task -- but it worked!
Faith and Family were key, including my wonderful family, who not only supported me and in the case of husband Jim and daughter Elizabeth flying to be there with me for the surgery and my big brother Garrett and incredible Lisa, who drove out from Philadelphia to encourage and support me. And Christy and Eric drove in to treat us to a delectable dinner before the four days of testing and procedures and surgery, including incredibly delicious ice cream, and who blessed us with their loving fellowship. How different that last pre-patient night could have been without their thoughtfulness and cheer and their love of Christ to share.
I cannot say enough good things and have such love for this Heart Family, too many to name, but including Terrie S, my first real Sister from this site, and Tony Mini-Z and Eleanor and M and Mia and Julia and Lynn and Lynn (yes, there are two!) and Gigi and Kelly (Kels!) and Olga and Karen and Bob and Adam (not from Eden, but who laid the foundation for all that this site holds) and Clare and Meredith and jeffo and Popeye and Tammy and ...bless you all - you know who you are. I want to also single out Anne Shannon, who was perhaps the first to reach out from my first post with so many real questions and gave me contact information that I carried with me for a very long time, like having a pearl or a diamond in one's pocket. Please celebrate this day with me, for things would have been stark, empty, and much more frightening without each one of you.
I received wonderful care through the testing and surgery and post-op. And I was blessed with so many praying for me from my high school and college and church and work and neighborhood friends and more, that I felt the peace and presence of God even as I headed to the OR after a sound night's sleep.
Please take to heart my encouragement, all of you who still have surgery ahead of you. Ask every question you can think of, for there are literally hundreds and more who are further along in the journey and are praying for you each day that you may have better health and a better quality of life in the years to come.
Thank you, my dear Heart Brothers and Sisters, for sharing your knowledge and experiences. How precious this Heart Family became to me, and there were so many days when I would be back to this site many times a day - like a lifeline - always an invaluable experience of sharing and learning and caring and later trying to carry on some of what had been given to me and what I have experienced.
Once again, I find my words inadequate in trying to convey the gratitude and love I have for each of you. And this incredible Heart Family - which has grown to be more than just a community - whose members give so much of themselves and share very private moments to encourage, comfort, educate, and pray to lift up each member in need. My love and respect for you is more than I ever imagined it could be. This site is really a home for us all. We cry and laugh and learn and teach and explain and recommend and suggest and ask and spill out what is holding us back and share our very personal experiences in the hope that another will be comforted and make their path on this Journey easier. And our friends and families come here to know how we are progressing when we are in a situation that is not conducive to phoning and texting and giving vital news to those we love.
One year of wonder - I am amazed at all that has occurred and delighted with being able to do so much more now. I have less vertigo and continue to slowly get stronger. My Grand Autumn has now doubled her original height and has a vocabulary that would be the envy of most 22 month olds - 'CONCRETE" "VACUUM" - She and her momma and daddy and uncle and granddaddy are the core of my Joy, along with the Almighty I strive to serve.
Sending hugs and love and grateful thanks to each of you. Please toast yourselves on this very special day, made so much easier and smoother thanks to your efforts and prayers! Ginger (of Oz)
Autumn with Momma and Daddy on first birthday party! Love our family!
Here's my newest picture!
July 21, 2015
Autumn with Easter Basket, Baby Doll, & Bunny on Granna's lap 2015
Journal posted on July 4, 2015
Today I think back to where I was (at home) and what I was doing one year ago today. While trying to keep my heart rate below the 100 bpm maximum that my cardiologist had tasked me with, I was thinking about all that was ahead. In one month I would be post-op with my critically stenotic aortic heart valve replaced.
Parts of my family and friends were still confusing me as they said things that made me think they either were clueless as to what I was facing or were terrified and made me question the work I had been doing to wrap my head around the entire process - trips included. I was working hard to maintain the focus and relative calm that came from both faith and the knowledge I had attained over months of researching and asking questions. This heart family continued to crush the myths as they were presented to me by well-meaning people trying to help me prepare. I would have been a wreck without you - God bless you all.
I was also suffering from bilateral severe Achilles tendonitis that, aside from the pain, made me elevate and ice my legs (even in the hotel the night before surgery!)
I am so grateful for the honesty and encouragement from my husband Jim, who did all of the trip planning, my daughter Elizabeth who would come for the most crucial days, and her family who were so generous to let her do so, my son, Steven, who supported me in his own way, and my big brother (cousin) Garrett and Lisa who drove out from the East Coast to be there for me. And for friends who came over in the last days at home to help sort and pack, keeping me from further injury to my Achilles. What a blessing.
I think of all the people praying from my friends from high school and church as well as others -- how graciously God answered their prayers, for despite the immensity of it all, God certainly carried me on a surprisingly smooth trip!
My special thanks to my Heart Brothers and Sisters who dispelled unnecessary concerns and gave me added prayers and knowledge to shove out any remaining fear.
The night before my early morning surgery, my chief concern was not at all whether I would make it through the surgery or whether it would go well. I was confident God had chosen the place and surgeon and staff and I was in good hands.
No, my fear was that with my history of a traumatic brain injury and the brain damage I have, I would wake in the ICU confused, disoriented, and afraid because of it. That I would have regressed back to the state I was in in the early days of the brain injury and not know who my family was or what I was doing in this strange place, that my ability to speak would be greatly limited to a very small vocabulary and I would not be able to express myself.
This is not something other members of our Heart Family could reassure me about. But the extra precautions for anesthesia that were in writing and had been used in the four previous major surgeries I had undergone in the three precious years were readily accepted by both the anesthesiologists and confirmed by my heart valve surgeon. As a result, the fears about orientation when awake afterwards were reduced.
So I woke up and knew who and where I was and who I would soon see from my family - a major relief. Then in the next 30 minutes I learned the value of having something at hand to put pressure on the operative site as I twice started having hiccups. In some ways they were comic relief!
I am so glad to have been able to leave the hospital so soon and be home earlier than expected. And I am thankful each day that, while often my road is rough, it is not because of my heart or concerns about it.
Bless you all who have been there for me in prayer and support, and sharing your knowledge to banish my fears.
I cannot adequately tell you how very much it meant and means, but can only say that I love you very much!
On this date in 1948, an event occurred that impacted many people, some still on this Earth, some in Heaven.
Willam H Farley II and Elizabeth Entwisle Hughes were married in a large Presbyterian Church in Philadelphia. They were deeply in love, and unlike what happens to many married couples over time, their love grew and deepened and never lost its fire.
I thank God for that union, for Bill and Buttons were my Dad and Mom. And to grow up in a home where the parents are madly in love is a tremendous blessing.
I miss them, but...
I wrote this for them today, thinking also of sisters Patty and Beth:
"And we all still carry you in our hearts!
The day after my surgery for the replacement of my aortic valve, my heart valve surgeon came by with a puzzled look on his face.
"Do you know what we found when we opened your heart?" he asked.
"Please, I said, tell me...".
"I have never seen this before and have replaced over 5,000 heart valves... In Your Heart, I found Jesus, and in his arms were hundreds of people! ... Who are they?"
I was overcome with a sense of peace and comfort. I told him that I carry the people I love in my heart - family, dear friends, everyone who has been praying for me.
He nodded. He is a very wise man. ''You", he said, "are certainly richly blessed!"
Tears of joy wet my cheeks!"
In Memory of my Mom and Dad, Bill and Buttons Farley, who were married on June 5, 1948. Mom died in the end of November 1980. Dad went to Heaven a week before Christmas in 2008.
We know they are together, because just hours before he died, Dad, who had not spoken for nearly a day suddenly sat up. He said "I see them. Buttons and Susie, I see them!"
My older sister, Susan Elizabeth Farley, died at the age of 30 from a degenerative neuromuscular condition that came on like a virus in her freshman year in high school. Towards the end of her years she was confined to a wheelchair. She died nearly a year after Mom. My daughter, Elizabeth Farley French, now Miller, was born on Susie's 30th Birthday.
Family is everything, and that includes the family we have through blood and the family we have through other relationships like this incredible Heart Family.
Almost through coughing as I reach to 9 Months Out
Journal posted on April 27, 2015
I have been here scarcely of late for several reasons. One has to do with the virus I caught from my little Grand Autumn. When sitting on the toilet (yes, the big toilet - no potty chair in the future for her!) it is necessary for an adult to squat down and stabilize the little ball of wiggling energy. And in just that position came a fair number of sneezes. I had avoided her virus for 2.5 weeks, but there was no way I was going to cover my face because doing so would have meant Autumn getting doused in the toilet. (And it probably would make potty training more of a problem than it cam sometimes be!)
So I woke up the next morning with a scratchy throat, congestion, and a cough. And it just would not go away. My FP finally decided she was concerned it had gone on long enough that she put me on an antibiotic to prevent a secondary infection. Fourteen days later the cough was becoming a very bad habit, and my sternum was starting to get sore. A different antibiotic was my FP's call. I called in 7 days later with 3 more days of antibiotics left and got the message to come in. Chest X-ray was hazy but no consolidation and, after discussing other possibilities, I told my doc I was willing to try waiting it out.
This would have been simpler if I had not been working on taxes with a new accountant and getting some legal documents in before a deadline. But the bunch together meant I was dozing off at my laptop -- not the best sleep one can get.
I have only had one "Hack attack" thus far today and it is 8 PM. That's a new record. So hoping when I hit 9 months out in four days, I will have more energy and be able to do more.
Little Autumn, now 18 months and very verbal, stringing words together, and focused and strong (she is 20 pounds and can lift my 5 pound weights! - try that with 1/4 of your body weight) - surprised my husband Jim last week by telling him very clearly "Happy Birthday, Granddaddy!" Her net worth in his eyes multiplied about 1000 fold! There are some recent pics in my photos.
For a time our home was "Kitty's House", but she has finally given us a little credit, and it is now Granna's house.
I can hardly believe that it will be nine months. And except for the things I was not able to do before the surgery due to the brain injury, I am pretty close to square one, and that feels good. I am looking forward to dropping the last of this tenacious virus, being done with taxes, which are ongoing right now, and finishing up the legal stuff. I am hoping to reduce some of my TBR stacks (books to be read) and get back to giving or loaning those read. Been too long.
At this time last year we were still learning about valve centers and surgeons. I had found this website but had yet to put up a post. I feel so blessed to have had all the wonderful physicians and healthcare staff there to give me care. Not anxious for a repeat, but it was smoother sailing than I thought reasonable to hope.
Blessings to all of you, and may each day find you closer to your goal of health.
With love and hugs,
Ginger (Yes, still in Oz)
Anatomically speaking...Yes, WomenAre Different than Men!
Journal posted on April 14, 2015
A number of us who correspond have been making note of one thing that has gotten little attention, but is important especially for women to know. One will see throughout this website "selfies" of community members and their scars.
Not all, but many of the women do not have a nice straight even scar at first. In fact, many women do not initially have scars that are conducive to photography. My scar even four days post op was extremely strange looking, and we were glad we were able to get another appointment in and ask questions before we flew home.
It is not perceptible now, but in those early days my scar was certainly not straight toward the top. It was extremely wiggly and had a fairly large area with a bump at the sternal notch that looked like a maze had been made in that area of the tissue, and it was progressively growing a deeper shade of yellow. (I learned from people on this site that in some regions this is know as "The Golden Egg".)
The answer to what was going on gave me a fair amount of relief. "You see," the doctor said. "Sternotomies and even minimally invasive sternotomies are closed by sewing from the bottom of the incision to the top. For most men this is a straight line. But the anatomy of a woman means the tissue mass in some areas is greater. Still, the skin is stitched the same way. So there is usually extra tissue at the top for women because all the extra breast tissue ends up much higher than it was before the incision. It gets pushed up in the sewing process. The extra tissue causes the odd appearance of the scar and the area at the top, including what some people see as a rippling effect. Over time it will heal and work its way to become smoother and redistribute as needed."
So women are more apt to also have greater bruising that seems most notable (or was to me and several women I am in contact with) as it goes from red tones to yellow in just few days time. The extra bruising and the often prominent lump or bump at the top (at the sternal notch) is something very few men will have to deal with.
And thinking about it, lying on one's back, unless there is adequate support of the breasts, causes the weight of the breasts to pull on the edges of the incision, and this may need to be addressed so the pulling at the site is eased and the wound has an easier time healing.
My thanks to a fair number of women who are part of this Heart Family for sharing their personal experiences so we could make sure we had the facts straight.
There are recommendations of various types of bras for women that may help them to be more comfortable, and this is the reason why. Men are not told they should get supports because they are not built the same way. (I doubt if this last part is news to many of you! ;o) )
Viva La Difference! But do take it into consideration and don't let it freak you out!
I put some Easter pictures with my Grand Autumn in my photos. Easter was a coldish misty day, but that did not stop Autumn from finding eggs and putting them in her basket once Daddy gave her some pointers! The yard is not THAT big if you are Daddy, but it is REALLY big if you are Autumn. Uncle Steven helped Daddy point out things seen more easily from their height than that of Autumn.
We rested and rocked a bit before going in to see what was IN the eggs. This, too, took some explaining and examples from Daddy under Momma's observant eye. Yes, so nice, even cool and misty, to enjoy the promises of Easter and spring and all the blessings they bring! Granddaddy was on call and we missed him, but the pictures helped.
Now that taxes are nearly done and some legal issues are (hopefully) winding down, Granna is looking forward to being able to have Autumn visit more on Daddy's day off so both get a break. Autumn's vocabulary is blooming faster than the flowers and she is growing visible hair with sweet wispy curls in the back.
When she comes (to "the Kitty's House!") she knows where all of the things for her are and dives right in. She used to have to see the Kitty, whose name (Lacie) she can now say, first before anything else. But she is growing fast that sometimes there is a beeline to the high chair because Granna keeps good things like yogurt, Mandarin oranges (that Autumn now can peel with almost no help), grapes, cheese sticks, and Cheerios (saved till last!) Usually a packed bag of food comes with Autumn, and she has learned to unzip it. Pretty sharp little 18 month old!
Her favorite songs are "Bible" = Jesus Loves Me and "Twinkle Diamond" = Twinkle, Twinkle Little Star. Sometimes when I put her to bed and she is still not TOO tired, I can hear the Bible song coming from her room!
So refreshing to see the adult kids doing well and happy. Uncle Steven built a new home with a park nearby that Autumn enjoys, and Momma is growing her practice of Marriage and Family Therapy. Daddy Jeremiah is still the mighty firefighter, but will always be a passionate hunter who prefers his bow and has amazing camo!
Though Granddaddy is on call every other weekend, he is sometimes home in the evening. Last night he and Autumn were tossing and rolling some of the balls from Autumn's toy basket. She (with Momma) sang Happy Birthday to him last night - as today is his birthday. Momma was sure Autumn could say Happy Birthday Granddaddy, but she saved it till she was waving goodbye and walking with Momma to the car. Had to get it in before she left. She also did some vigorous drawing on the outside of the BDay card envelope, too!
It is starting to feel like I am getting some of my life back. I had a bad upper respiratory infection with weeks of coughing that made my sternum start to complain. But that's on its way out and I have no problem any more reaching most things and helping "Hepping" Autumn.
Prayers and all good things for wisdom, comfort, and smooth paths as Ned and David, Renata, Jennifer, and Laura have the ultimate process of heart valve repair or replacement and the healing begins. Please let us know how you are and what we can do in addition to praying or to pray more specifically for your needs. There is certainly a relief to get further down the path on this Journey, and while there may be bumps and dips on the path, you will do well. Don't hesitate to ask questions because so many of us have been on the same path that we usual have several people who know exactly what you are talking about.
So blessings to each and every one of you as you work to become healthier!
Grand Autumn on Easter with Bunny from Aunt Terrie 2015
Days of Healing and Growing and Moving Forward
Journal posted on March 17, 2015
I am so grateful that after over four years and five surgeries, I am beginning to think there may be a time when I will be more like the person I think of myself as being. There is even a possibility that after having had to set things aside for yet another health crisis, I may actually be able to catch up on the incredible paperwork that rolls through here and have some time to look through (and toss a lot of) what was moved out of my office to home in October 2010. I may be able to clear my files and find even more of the floor of my study! And I may find more time to relax and laugh with family and friends or even read a good book for pleasure without feeling guilty that I am neglecting something.
We average four to five inches of (no, not snow!) mail daily in our now locking mailbox. It is a burden just knowing it is coming each day, although we are selective and do a lot of recycling and shredding. But what came in yesterday kept me up until 3 AM to give the fast turnaround that was needed. The intense tinnitus does keep me awake, but makes concentration more difficult.
I know I will always have to deal with the day-to-day discomforts and frustration of the lingering effects of my traumatic brain injury, but I am so delighted to be a survivor -- past the cancer and the heart valve replacement.
I not only have my beloved family to enjoy, but have made many very close friends with whom I will continue to keep in touch. This Heart Family is so much a part of who I am now. I may not post as often, but I am still praying for each of you. I look for the upcoming surgeries and add each to my "Stickies" prayer list on my computer.
And yes, Eleanor, my Grand Autumn is here more and more, stringing words together at 17 months and going down for naps at "The Kitty's House" -- I know that on the priority list Granna does not cause the excitement of the kitty.
And sometimes Momma and Daddy are both working to keep the city safe and help people heal. I am grateful they entrust Autumn into our care.
But what joy it is to Hold this beautiful Child of God, freshly changed and in pajamas, snuggling with her and rocking her in my arms on the edge of the "big bed" that Pooh sleeps in while softly singing her favorite bedtime song of "Jesus Loves Me". Then gently laying her into the port-a-crib with her sleep snuggly toy. It is a blessing my Mom did not know, having died while I was pregnant with Autumn's Momma, Elizabeth.
Life is so good. The trials are really tough, but the joy outweighs them!
Bless you all! May each of you find comfort in the day and in the miracle of God's miracles big and small, and may He heal you and steadily give you strength to reach your own goal of health.
I love you all so much! Ginger
These are tidbits, but they may help some of you.
1 - My Computer Wizard son Steven taught me this: Computer Post-it Notes
If you want to use post-it notes on your computer that will not make your monitor gummy, download (free) Stickies at www.Stickies.com .
These are so useful! My longest one is Ivory background and has names in Red Italics (changing tone after surgery, bold during week of surgery). I save it as "1 HVS Prayer List". That way it is always first to find and easy to update and save.
2 - I am not an accountant, but I am our major tax preparer before the accountant. For those of you who are purchasing/renting chairs, they are tax deductible if you itemize medical expenses. Had to laugh when I saw it on the list today! Check it out!
Prayers and all good things for Randy and Lisa Tomorrow
Journal posted on February 24, 2015
I have learned over the years that one of the greatest gifts one can give another is to tell them you will pray for them and THEN DO IT! This Heart Family is a powerful example of what prayer, encouragement, support, and education can do.
Please be there for Randy and Lisa as you were for me and so many others. What an incredible peace and comfort I found -- way more than might be expected. Light a couple of candles in your home or set your alarm and send up another prayer for them and their surgical and care teams please.
Praying for others was the best thing I ever did in the long months after my traumatic brain injury. Because the prayers work on the heart of those praying, too!
Prayers for Pam and Peter - Two "P's" in a Pod - on Monday!
Journal posted on February 21, 2015
Am starting early preparatory prayer for Pam and Peter, who each are scheduled for surgery Monday! Monday is a good day for surgery because almost always the staff is fresh and the rooms are at their cleanest! (No, I was a Thursday - but it was my time.)
I know so many of you who are part of this great Heart Family will be joining me in lifting them up, praying for comfort and protection, divine guidance for the surgical team and the staff who will be caring for them.
Go for it! This is life-saving surgery without question, and you are doing the right thing. Remind yourselves to relax and "go with the flow" -- following instructions and asking any question you may have throughout. Knowledge is power and it also decreases fear. So if you need something or don't understand what is happening or want to know what to expect next, ask. Remember, Peter and Pam, that as the patient, everyone there is working on making you as healthy and comfortable as possible.
And we as your heart family have certainly responded to many concerns and questions that come from family members while they are in the hospital. We know as much as any living being can what you are going through, and we want you to feel comfortable and encourged and supported!
I think back to the days when I was in early recovery and how helpful it was to hear how others were doing who were on about the same place in this Journey. I recall Eleanor clearly saying that we are better off if we listen to our bodies and do what they tell us. But I did not expect to heed those words six months later. But truth be told, some things just wear me out and I was close to running on empty early this afternoon,
Terrie and I had exercised together while talking on the phone, which was the best! But after we finished our workout Terrie noticed the fatigue in my voice. Did I need to take a nap? Well, yes! And in fact, Terrie realized she was close to that same point and was going to curl up in her recliner for a short snooze.
My little Grand, Autumn, has been here the past two evenings, the first of which she went to bed in her room here, where Pooh sleeps in the big bed next to her and she has the crib! Momma picked up her sleeping Snuggle Bunny around 11 PM. I adore my family, but being up and trying to stay on top of what an almost 17 month old needs and doing bedtime routines when they are tired does take energy. And Autumn Grace really knocks out fast once in bed.
My body reminds me later that if extra energy is expended somewhere, it eventually will need replacement. And I, like Autumn, was soon fast asleep and now have energy for the rest of the day.
Dispelling Pre-Op Fear - Destroy myths and learn Truth
Journal posted on February 15, 2015
I was within a few weeks of my aortic valve replacement surgery. I thought I had really learned information from the reading and questions to this Heart Family and delving into the Learning Center that was just about all that I needed to know to be prepared. I was armed with information and had so many dear people praying for me. I was ready except for packing!
It was then that during a visit from a close and very knowledgeable friend, several remarks were made to me that felt like a punch in the stomach or worse -- like I had lost all I had attained and was again in FEAR. Later I learned that what was said was NOT TRUE.
BE AWARE THAT PEOPLE, NO MATTER THEIR MEDICAL BACKGROUND OR HOW WELL-MEANING, CAN DIVERT YOU FROM A POSITIVE OUTLOOK WITH JUST A FEW WELL PLACED (BUT UNTRUE) REMARKS. THIS HAPPENED TO ME. (I remember thinking later, why have I not heard about this before when I have read so much, read posts and asked so much? Obvious answer - this was another myth.)
During that visit in my home, someone dear to me told me two things that wiped me out and sent me back to the pit of fear. THIS HEART FAMILY CORRECTED THE WELL-MEANT BUT UNTRUE REMARKS AND SET ME BACK ON MY FEET. I CANNOT BEGIN TO TELL YOU HOW MUCH HEARING THE TRUTH FROM MEMBERS ON THIS SITE WHO WERE POST-OP SAVED MY EMOTIONAL STATE AND GOT ME BACK TO A POSITIVE OUTLOOK.
WHAT I WAS TOLD: 1) The cutting at the surgical site is severe, with bones being sawed (which I knew), and is worse than any incision you (meaning me) have ever had, [despite four major previous surgeries in the past 4 years] and 2) After surgery there is shooting pain with every breath that is taken.
THANK GOD THIS IS UNTRUE AND THE HEART FAMILY ANSWERED MY QUESTIONING OF WHAT I WAS TOLD WITH WHAT THEY HAD EXPERIENCED.
THIS HEART FAMILY TOLD ME: The pain is not a shooting pain post-op. There is not pain with every breath that is taken. Instead, everyone described it as an ache in the operative area -- not shooting pain -- that is not enhanced with each breath. And in addition, there are pain meds available when needed, but I would not have this trauma with each breath as described.
Many people also told me that they had back pain - from the positioning while in the OR. Because of this, I took a heating pad with me and was so glad to have it after surgery. (My surgery took place out of state.)
My own experience was that what the Heart Family says is accurate. I did not have unbearable incision pain or pain from the sternotomy, nor was there shooting pain with each breath. Most of what I felt was an ache in the area of the surgery, along with some aches like pulled muscles
under my arms and around my chest. This may have been more widespread in my case because I had undergone bilateral mastectomies for breast cancer just two years earlier.
I did not need the heating pad in the hospital, but know they would have supplied one had I requested it. But we were in the hotel several days after discharge before flying home, and I made constant use of the heating pad I brought with me. It reduced my need for pain meds and I believe eased my recovery.
LESSON LEARNED: ASK THE HEART FAMILY for ANY and EVERY question or concern you may have ANYTIME, even while in the hospital. My source who was "helping" me had a strong medical background and had always been reliable. But she had NEVER been through the surgery. Unfortunately, what she felt the need to tell me was untrue.
I IMMEDIATELY POSTED ASKING IF THIS NEW INFORMATION WAS TRUE. I LEARNED THE TRUTH AND THAT WHAT WAS TOLD TO ME WAS INCORRECT WITHIN HOURS FROM MANY OF MEMBERS OF THE HEART FAMILY WHO WERE POST-OP. AND IT WAS A SOOTHING CLOUD OF GENTLENESS THAT TOOK ME BACK TO REALITY AND ENCOURAGED ME.
May God bless each of you who have questions yet to be answered. Please ask them, no matter how far out they may feel. And God bless EACH OF YOU who take time to answer questions and share what you have learned. KNOWLEDGE replaces FEAR, and each word of encouragement or answer you write in response is so precious. Many of you know because like me, your fears were replaced with truth by this generous and giving community.
God bless you all! I will be eternally be grateful...
Bless you all! I was so thrilled to get to six months, but had lost some of the cardiac rehab benefits due to the vertigo that started Dec 23. The GOOD NEWS is that I am veritigo-free as of 5 days ago, so yesterday was back driving, got in to see my dentist and get a cleaning (They are a great bunch of encouraging Prayer Warriors!) and went to Audiologist to see if area in right ear that had been bleeding had healed so I can wear my hearing aids again. Both were good reports.
To celebrate I went by the Christian bookstore close to home and picked out Valentines (two for Grand Autumn - yes, mailed with heart stamps!), and started getting a few things for the birthday season that starts with Jeremiah on March 29th, then husband Jim April 14, son Steven April 22, daughter Elizabeth May 6th, etc! (Autumn and I have Autumn birthdays, so I found her an Easter bunny that has a soft blanket to sleep with.
Last week as her Momma and Daddy wanted an evening out, I suggested since I was yet to restart driving that Autumn COME visit Granna and Granddaddy. I would put her to bed here. HMMM........Pause as they thought about it and talked it over. OKAY!
So Autumn came and I had put the big Pooh in the big bed in the room her portacrib is in. The quilt my Aunt Ann hand stitched for Elizabeth (Momma) as a newborn used to be out in the front room for her to have a familiar clean patch to be laid on, changed on, etc. Now it is the mattress cover for the crib! So I took her back when she came in to refamiliarize her with the room (Pooh got bounced on!).
When it was time for Jammies, I told Autumn we would go back to do fresh diapers and jammies up by Pooh, then we would sneak quietly into Granna's room to say good night to the kitty (Lacie is a favorite of Autumn's), then go back and say good night to Pooh, then go to bed. As I put her into the bed, fresh tears and "Dadda, Momma". I reminded her she would see them when she woke up. I shut the door and with in a minute all was quiet. What a treasure she is!
Glad she is so familiar with our home and can sleep here. I laid on my bed and rested until her folks got back! Another way to get to see all three of them!
As for the vertigo, you may recall that I had a real bad bout of it the first five weeks after surgery until we got the metoprolol dose cut in half. My blood pressure was too low to adequately oxygenate my brain. So if you are having vertigo issues, check that first. There is certainly plenty in the literature of the brain taking up to a year or more to shake off the intermittent effects that come from the time on the heart-lung machine. But many of you may recall that I had vertigo several decades before my bicuspid aortic valve became stenotic. So this last round from the end of December for about a month was the brain damage vertigo. It is something I have learned to survive through, never knowing how severe or what the duration will be "this time". So hang in there and be gentle with yourself. It will go away.
But again, with Vertigo, check your BP first and make sure it is not low. That is an easy fix.
This is HUGE!!! I am grateful to be feeling this well and so appreciative of all who pray and encourage me. The best care and the best prayer, who could ask for more???
Twice this evening I have written, then lost, five paragraphs. So yes, I am a tad bit irritated. I wanted to let you know all I had to tell you.
Condensed Readers Digest Version: Long way from no pull push lift reach and titrating pain meds so at least sleep can occur. Two big vertigo episodes - first five weeks post-op before metoprolol dose was cut in half, dose too high -- second started two days before Christmas and was crippling, preventing meals with family through Christmas, close to dead in the bed, unable to eat, no noise, lights, etc. Sipped Reed's Raspberry Ginger Brew (17 gm of ginger in 12 oz bottle - it helps the survival period) Bummer! (Was able to sit in recliner and enjoy gift giving!)
Now well enough to get taxes going and work at renegotiating health insurance (which would have gone up $6000 this year if just signed. Think I have found a way to not have to come up with the extra $6000 and no change in care. Amazing! But $6000 is motivation!)
Hope and pray (crossing fingers which makes typing tough) that the abating vertigo of the past month will be gone by end of this week. Not sure what set it off, but this was head/brain injury, not drug-induced. Just avoiding looking up and back and getting lots of rest.
Then need to strengthen from missing more than a month. Looking forward to being able to drive again. And special thanks to my family, especially Jeremiah and Elizabeth, who have made efforts to let Granna have plenty of Autumn time; without question my little Grand, now 16 months young, makes Granna smile and lightens my spirits.
How many 16 month olds do you know who understand the meaning of the word "Come" and use it? One of this week's accomplishments by Autumn. Also, first time that she surpassed lifting two 3 lb weights and, instead of rolling one, lifted a 5 lb weight, clutched it to her chest and carried it across the room to let Granna take it from her determined grip. Then repeat with the second of the 5 ib weights. She is sooooooo strong!
Happy? She dances on her toes and makes a face that involves wrinkling her nose like Daddy does and smiling so big her eyes nearly close, all with delightful sounds eminating from her little mouth (which suddenly appears to be full of teeth -- I think it's a false impression - the teeth are all in the front!)
Love to you all my precious family, friends, and Heart Family! May the next 6 months bring more health, healing, and comfort for all!
Just a short comment about incision care, since I have been getting requests recently on the method I use. It works for me and may help you, too. We are all, I believe, told to wash our incisions daily with mild soap and water and pat dry.
What I learned to do in past surgeries is to add just a very small step. Once the incision has a scab and has been washed and rinsed, lay your clean wet warm washcloth on the incision like a warm compress for about five minutes, then pat dry. Your results will be even better if you do this three times a day.
The reason to consider doing this is that once the scab formation is complete over the incision, which is quite quickly in most cases, scabs will do as they normally do if left untended. They dry and harden and pull at the edges of the incision, sometimes causing itching and irritation. Laying the warm compress on the area allows the scab to soften, and because of this, the pulling and other results of a hardened scab are alleviated. The softening of the scab allows the edges of the incision to come together in a "more natural" and less traumatic way. The usual result is that the scab drops off sooner, leaving a faster complete closure of the incision.
The two areas where this may not occur are at the edges (beginning and end, it you will) of the incision. The reason these are often the last parts of the scab to drop off is because at these two paints in the incision, the surgeon commonly puts in an extra stitch or similar to anchor the full suture.
Once my scab was gone, I used the gel my plastic surgeon had recommended after breast cancer mastectomies and reconstruction. The name of it is DERMATIC ULTRA - Advanced Scar Treatment. It is a clear gel that dries quickly and is amazing in how well it works. My husband used Google to search for it, and found the one ounce tube (Plenty!) at a lower price than anywhere else. I used way too much at first with the cancer surgeries, then my husband (a surgeon himself) informed me that a drop smaller than a peas is enough. Drop onto clean finger and massage in with fingertips. Let it dry and dress. It is a bit pricey compared to Mederma and some of the others, but since one tube got me through bilateral mastectomies with some left for this heart valve replacement, it easily can do the job whether you have a Mini Z or a full sternotomy. I was initially surprised something like that could make the area feel so good.
(I am adding this back in so newer people can find it. Today is January 23. Since the initial post on this, I have learned to put a thin layer on over my scar before going out in the cold. I had some issues with throbbing along the sternum, and now it's not a problem.)
Sensitive Scar - Repeat from one month out - Bunch of us did
Journal posted on January 23, 2015
I have a Mini Z, as Tony C-P, would call it, but the incision the one most irritating part of the surgery that seeks my attention. With no scab, its edges remind me of the newness of the scar with nearly every move. I know Adam recommends the Invisible Shield for full sternotomies, but am aware that not everyone has one and something is needed for my shorter but very electric zapping new scar.
So two nights ago I was trying to figure out an easy, inexpensive way to go to sleep without its constant reminders. And this is what I found that works for me.
I took a couple gauze pads and folded them length-wise so they would cover my incision site completely. Then with the most talented hands in the house, had my husband, Jim, tape it into place with some micropore tape. He gave it a little slack so if it shifted a little, it was not going to send me to the ceiling. And in the first 24 hours it took a shape that contours well with my anatomy. (Any tape is probably okay, but I have had enough adhesive lately and this is much gentler and less nerve rattling to take on and off.)
Can't say how long I will keep it, but it reminds me of how over 35 years ago we figured out that my post-mastectomy Mom tolerated everything better with one of Dad's T-shirts on before anything else, bra included, that she wore. Maybe it will help you, too...
Along with my photos I placed pictures and quotations I knew would lift my spirits once I got close to surgery and remind me to lean on God for strength rather than myself. This quote is there and is one of my favorites. I wish I knew the source, so if any of you can identify it, please let me know.
not all scars show...
not all illnesses can be seen...
not all pain is obvious...
Remember this before passing
judgement on another.
I do not recall putting this in, but Autumn Grace is 13 months here. It was the first snow she may remember, and we sat inside the outer glass door to watch Momma scooping snow since Daddy was firefighting. Granna had just recently gotten a warm fuzzy sl
December - 4 Months and Major Changes
Journal posted on December 4, 2014
Haven't been posting for a while. Gee, the picture of my little Grand Autumn and I was taken over a year ago. Autumn is now a bustling 14 month old who stops only when asleep.
We had a family birthday dinner out about three weeks ago and my son (Uncle Steven) posted afterward that he had just learned that his niece is "a bottomless pit, the Energizer Bunny of Eaters"! Well, she has to be putting some calories in to replace all that she is burning up, and more to grow in addition.
Autumn now can: walk - slowly, quickly, on tiptoes, backwards, AND she climbs and makes a large variety of animal sounds, can very proficiently feed herself (spooned in peas last night!), does her own singing and talking, and the words are getting clearer and greater in number, and she has her own arm and hand motions to help express herself. There are most of 8 (yes, eight!) teeth in that little mouth now.
She makes noises for cars and airplanes and clocks, but my favorite is her "Woof!" for every dog or picture of a dog seen or bark heard! Her Momma made her a Pink Butterfly outfit, wings and all, for Halloween that was incredible. We had only one problem -- Autumn moves so much and so fast that the pictures are almost all blurred.
This Granna gets plenty of Cardio workout thanks to Autumn. She is 19+ pounds of constant energy -- a little spitfire. But she can sure hug! And she cooks in her own kitchen in the main room at their home (gift from Great Aunts Patty and Beth) when she is not bringing a book over (or 12 or 15 books) to be read or hugging her babies. She can swing in the big swing in the back yard as well as the baby seat swing. I'm impressed. When she comes down the slide she immediately turns at the bottom and works her way back up.
I am delighted to have a valve that is now four months new, and to have completed supervised and monitored cardiac rehab (although I anticipate I will be doing various versions for the rest of my life!) Yesterday, I actually drove myself to the grocery store and made a pretty big run. This may not sound like a lot, but between my head/brain injury, five surgeries, and vertigo issues I was practically a prisoner in my own home for about four years. And the grocery store with its bright lights and colors used to trigger the vertigo.
Yes, I feel like I am alive again! I have lots of catch up to do, but am chipping things off bit by bit.
Steven has been living in the home he had custom built, doing much supervising and all the planning and financing, since just over a month ago. So there are three family homes now! And all are within very respectable driving distance. This is HUGE!
One fascinating piece of information that shocked my cardiologist: My identical twin went in for a thorough echocardiogram for evaluation of her bicuspid aortic valve and learned -- SURPRISE! She has a NORMAL HEALTHY TRICUSPID AORTIC VALVE! I am thrilled! Apparently the hearts were not completely formed before God made Two from One! And what a blessing, since she and her husband are still rebuilding after a tornado made a devastation out of their home with a direct hit last Mother's Day. Enough!
I am so grateful that it is hard to say enough -- the prayers, advice, support, encouragement, and love of so many here on this site and family and friends and healthcare people are the reason I am alive to write this today. This birthday felt like such a gift. I am calling this "The Year of the Heart", for it certainly is for me! I lost a lot in four years, but am sure enjoying making up for at least some of it!
God bless you all! I wish for you comfort and hope and healing and being each day one step closer to the health you desire.
May your celebrations of the season, whether Christmas and the birth of Christ, or Chanukuh and the lighting of the Menorah and special foods, or whatever your traditions are bring you this year great Joy and a full great year to come.
I am so appreciative...and feel so full of love! Ginger
I failed to mention the two earthquakes that have shaken the Heartland in the past two months. I felt both of them, but thankfully that was all. This last one did cause a bit of damage, but no injuries. We are so used to being on the alert for tornadoes, high winds, ice and hail that these earthquakes feel out of place! I remember Terrie posting from California as an earthquake occurred after her heart valve surgery but not before her discharge from the hospital. I am sure it was an unwanted event. I am just thankful these - especially the big one during Terrie's hospitalization - did not cause unwanted tremor in the hands of these magnificent surgeons who care for us so ably. Bless them and the medical teams and staff this Thanksgiving, too!
Never will this day come without my thinking of the distress that came to the USA on the day President Kennedy died. We were glued to the television for days on end as each of us grieved for this great loss, for his family, ourselves, and for the Nation. May "Jack" be remembered for the vigor and spirit he brought to the Presidency, and his many words of wisdom that live on as part of his legacy. So traumatic and unbelievable, even now...
As for myself, I started to have a dip in energy - sleeping more, no appetite, eating less or making myself eat, fatigue and missing 3 out of 4 cardiac rehab sessions, and finally starting to plateau and then add to my weight. ** No question - time for thyroid checking again, although it had been done recently.
My relatively new FP got right on it, and while it took some time for the pattern to be set and then recognized, there was little doubt that my dose needed to be bumped up. Because of all of that, I had regained 4 of my 19 pounds lost - but they will leave again! I started back on a higher dose this past Thursday and still ended up napping today, but also today saw a slight change in the right direction when stepping on the scale and again have an appetite! I'm grateful that this was caught and appropriate action taken when it was.
I have three cardiac rehab sessions to make up, as yesterday would have been my last day. It will take me two weeks to accomplish because of Thanksgiving, but I am, as my Mom used to remind us, flexible (so I do not break!)
And Wednesday is my first post-surgery echo, then appointment with my cardiologist. I hope he is content with how things are going, because I certainly am.
I ask you, my fellow heart brothers and sisters, to start praying for one of my closest friends. Jan lived next door as our children were young and growing (and two of hers were born). Now she has an unusual mitral valve problem that will require surgery.
Like me, but from different causes, she went through a life-threatening time with brain complications. We were still next door to each other and hers was several years after mine. She has not had to deal with the damage after initial recovery as I have, but there is still concern with that history and heart surgery. I will tell you more, or hope she will come onsite and tell you herself.
I clearly remember trying to get my head around the immensity of the concept of Heart Valve Surgery, and know Jan is dealing with so much each of us have been through. Best estimate is for surgery is after Thanksgiving in early December, and as with me, they will have to go out of state for the surgery, not an easy accomplishment.
I have been having a great time with my family whenever I can. I am so much stronger and being able to get back to doing activities that my Grand Autumn has reached the skill levels for is great.
Autumn has discovered that the bag (purse, backpack, lap bag, whatever) of Granna's almost always has something special in it. Usually it is a stick of string cheese, but there have been Elmo socks at Halloween, a plush pink purse so she can carry things like Momma, and a bright pink backpack that now upon occasion can be used to carry necessities without the huge diaper bag.
Her face brightens up and her excitement grows as she either notices the bag on the kitchen counter of their home and starts pointing and making sounds, or - for my birthday dinner out - when she was starting to fidget before dinner arrived. I asked Autumn's Momma if there was a bib (No) and had already gotten a spoon from the waitress. But her backpack was there, and in it was the pink camo scarf I had put in it. Daddy did the tying, as Autumn, who has played peek-a-boo with me using the scarf before, was concerned as it started to rise up in front of her. But as soon as it was tied, mention was made of Granna's bag...and again, glowing smiles, excitement, and great anticipation. This time the little bag had a small ziplock bag with a folded paper towel and two orange balls. Maybe I told you this already, but the orange balls were a perfect holding size and once the peeling started, then the first taste test, both Mandarin oranges were devoured. So fun and a healthy start to the meal.
Thanksgiving was always my Mom's favorite time of year. And as I look back at the past years, You, My Heart Family, with all of your sharing, encouragement, education, and support are a huge part of what I am thankful for. I never imagined anything like this site and family, but do not want to think of what it might have been like without you.
You are precious to me, and I send each of you my heart-felt thanks.
May you enjoy this time of Thanksgiving, hopefully with family, but certainly on the path toward better health. I am blessed that it has gotten to the point where listing all of you who have made a difference in my life is so long it would take paragraphs. But you know who you are and God knows how tremendously you have blessed me. Please take the time to relax and give thanks, and I hope you will have additional memory-making times in the week ahead.
I mentioned that I was tired? I guess all that activity and fun may have explained it, but it continued through the week. I set my alarm on Friday for time before cardiac rehab to get up, ready, and there. Jim was up at 4:30 for an emergency at the hospital, giving me the chance to wish him a good day and reset my alarm.
I woke and looked at the clock. It was 1:18 PM!!! Rehab starts at 1:30!!! I had slept through the main alarm and both of the back-ups! I called in a panic! The calm voice of Julia at rehab said not to worry, and as we talked explained that any missed days would just be added at the end. Back to sleep for most of the day.
This morning I am up only due to a call from a close friend who wanted to borrow one of my copies of Adam's book for his wife. They used to live next door to us. She is headed to Mayo's for testing and surgery for her mitral valve. I am so glad I will be able to help her through this as needed. We have been helping as though we are one family for years, and it will be an honor.
But, while I came on site to make sure my precious friend had a reminder invite to this website, I know I will head back to bed.
So WHY AM I STILL SO TIRED?!? Where did all of my building energy disappear to?
Maybe I have overdone it. Maybe my thyroid level is dipping too low once again. Maybe...
So I will probably be making a call on Monday after going online. My memory is that my last thyroid tests (only two weeks ago) were normal, but barely. Perhaps they are again too low???
Time and my good physicians will tell. And I want to be moving before my first post-surgical echo and second appointment with my cardiologist in 11 days.
If you have some insight and care to share, I would be delighted to hear. I am 3.5 months out now and doing fine in cardiac rehab, but now have missed three sessions in the last two weeks (3 out of 6).
Love to you all and prayers that you are each one step closer to the goal of good health, that you are granted comfort and sleep, and that you give yourselves the break you deserve and relax and rest this weekend, Ginger
It has been a wonderful but difficult week. To have a birthday this week meant something no other birthday has impressed upon me so deeply. (You can see my Nov 12 journal post for details.)
But as through Faith in the Lord I have treasured as much as possible each day He gives me, when my heart condition became not just serious but critical, I was struck by the ways God works to take care of each one of us in just the way we need.
I am richly blessed, and that is not a new thing. God and my praying family and friends have brought me through so much, for my aortic valve replacement was my fifth major surgery in nearly three years.
For whatever reason, I now find myself exhausted, and as Eleanor has so kindly and caringly taught me, my body will tell me where I am and when I have done something too soon. I need only to listen to it and care for myself accordingly.
Wednesday, the birthday of my identical twin, Patty, and me, was filled with activity. The door bell was ringing and I was so tired that I kept getting back into bed after marveling at the incredible reminders that my family and others love me and were making sure I knew with flowers and chocolate and fruit and gifts.
Each time I dragged myself out of bed, I would change one more piece of my outfit because I had Cardiac Rehab at 1:30, and it has been such a help and confidence builder. I realized as the morning of doorbells and phones ringing continued that I did not have the energy to even get to rehab, let alone participate, so I called and the staff, of whom each is incredible, let me know this was okay and could be handled.
As it was, had I not stayed home I would have missed three of the deliveries, so it was the right thing. But after posting on this site I really accomplished very little until it was time to meet my family and celebrate together what I call "The Year of the Heart".
And my entire family was there, even my newest son, who broke out of a hunting trip to make the occasion. My Grand Autumn Grace sat at the end of the table next to me, and as is often the case, I had a treat for her in my small bag.
This time, I had considered that dinner at a restaurant might take a while to get to the table. I knew her parents might have already fed her, but I put a folded paper towel and two little orange balls in a very small ziplock bag.
Autumn was quite hungry, and her Momma and Daddy had books and some small toys with them. But when I asked Autumn if we should check Granna's bag, her face lit up with excitement and I had her full attention. I brought out the bag and set the paper towel, folded in half, at her place at the table. Then I let her feel one of the orange balls -- just the size she likes because it fit securely in that little hand with the graceful long fingers. Then I asked if I could show her something. I stuck a bit of my thumbnail into the outside of the ball and pulled a small piece off. "Look inside." Mandarin oranges! Something Autumn really likes but has never eaten except out of wrapped packaging and the liquid it comes in from the store.
I had asked the waitress before the young adults and their precious bundle arrived if I could have a spoon. (Napkins had only forks and knives.)
Soon Autumn was pulling off one-by-one the sections as I loosened them. Her Daddy and I would tear them in half and she would immediately pop one half in. Yes, the first taste confirmed that these were the real thing. I would put the second half on the spoon to have it waiting. As soon as the first half had been consumed by the little one with almost all of six teeth now, she would open her mouth wide and lean toward the spoon. In would go the second half.
Truthfully, Autumn feasted that night, for she had all of both Mandarin oranges, some of my trout, some bread with herbs from Daddy, then some very large French fries that Daddy only let her dip once in the ketchup! Then a pickle from his burger and some of my green beans that Daddy broke up and some of my spaghetti squash. Everyone was amazed that she continued to eat, but she is growing and certainly burns off a lot with her energy at full blast unless asleep. Oh, a few tastes of something ridiculously cold - ice cream from our one spoon!
Her Uncle Steven posted soon after that he had just learned his niece is the Energizer Bunny of Eaters! Very true!
It was a wonderful evening. Afterwards our hunter went back out into the wild and brought down a buck to put a topping on the occasion!
Cold Front Hits Great Plains - Late November 10, 2014
Journal posted on November 10, 2014
I got a call from a friend in McPherson (maybe an hour or more north of here as I actually - amazing as it may seem -- was at the grocery store doing the majority of our shopping for the week after rehab today. Apparently, McPherson had been hit by a cold front and temperatures dropped about 20 degrees, accompanied by high winds.
I called my daughter at her work before going to the grocers in the hope that my Grand Autumn might be up for a walk in the stroller and some time with Granna. But Autumn was over at the Nanny's (experienced mom of four ranging in age from 17 to 4) home. It was not going to happen. Then Elizabeth mentioned that she had a meeting at seven, and if I wanted to come over around six or so, I could visit with both of them and then have Autumn to myself. Say no more!
Still did groceries and packed some yogurt and cheese into my little pack, then headed over to E's after a little time here seeing what was up -- or at least as much as time allowed. Then I headed to E's. Her husband is hunting and Elizabeth had really planned to take Autumn with her -- where she would have immediately become the center of attention -- but Autumn's usual bedtime is 7:30 and E knew it was going to be a stretch. Then I called her...
Knowing what had been occurring in McPherson, I grabbed a hoody and my windbreaker on my way out of my car. My windbreaker is more than just the Joe Average kind --- I wear it and layer it most of the year except the dead heat of summer. It has a hood and heavy duty zippers and pockets, and I wear in rain and snow and sleet showers in addition to just blasting wind.
Autumn was READY TO EAT as I walked in. She flashed me a bright smile, then got back to what Momma was preparing as Little A started to lose her patience in her high chair. I pulled up a chair and staved her off long enough for her mother to cool off the freshly baked and mashed sweet potato. Then tomatoes with basil was added. Finally a good-sized helping of blueberry Greek yogurt. When I do the feeding, I always use two spoons so Autumn can control one and stir, but I can keep loading food into her mouth which somehow pops open just before the spoon arrives. Then Autumn took a chunk of sweet potato and dropped it in what was left of the blueberry yogurt. Now that is a combination that had never occurred to me, but Autumn was delighted to plop it in her mouth once the spoon was full.
She has some sign language her parents have taught her to help her communicate, and one sign means "all done". That sign was not made tonight, but Autumn started handing bits of food to her Momma at the sink. Elizabeth told me that next the plastic place mat would come up and that would be it. Sure enough!
After washing up it was time for Momma to get ready to go. Many hugs, then Autumn and I waved as we watched her mom back out of the garage. With Autumn securely held with her back against me and her knees up, she and I pushed the button and watched the garage door go down. Next, the two of us pushed the door from the garage shut. I set Autumn down and checked the knob to make sure the door was tight. Autumn then reached up as high as she could and touched the knob. So much is learned by example!
I had cleaned the bits of food off of Autumn's water bottle and headed into the main living area with both her water and mine. Then Autumn started to get excited and went back to the edge of the kitchen and pointed up to where I had left my little pack.
It is true that the last two times I was over first a pair of Elmo socks had come out of the bag, and the next time a stick of string cheese had come out and we had shared it. Fortunately, it came to me while grocery shopping that Autumn so much admired my cheap but treasured bracelet. Autumn is not old enough yet to actually have a bracelet. I found a great deal on Smurf store brand bandaids and decided they might serve as a bracelet for Autumn. At home I had tossed them into a baggy, then my small pack while putting groceries away.
So later as Autumn excitedly pointed to my pack, I asked her if she thought there was something in Granna's bag. Excitement, squeals and smiles and lots of pointing let me know she was pretty sure something must be in there. [At this point I realized I am going to have to make a trip to the Dollar Store and load up on some acceptable items.]
Indeed, finally after much looking, a bandaid is retrieved. We went into the main room. I reminded Autumn that I had my bracelet on, then suggested maybe she would like a bracelet, too. Such excitement! Then she soon had a blue Smurf bandaid on just above her wrist. We compared bracelets.
There was some playing and reading of books, then time to "find the diapers". (Granna never remembers where they are.) Autumn is all animated as she leads me to her bedroom. Soon play clothes have been removed, a clean diaper is on and we work on pajamas. Autumn checks on her bracelet now that her clothes are different. Yup, still there.
Vaporizer was turned on, lights were dimmed, and Autumn brought over a book to read. We finished and sang Jesus Loves Me, which I know Daddy sings to her.
Into the crib with her little pink and zebra snuggly she goes. I rub her back lightly for a minute and tell her I love her and good night. As I turn to leave I pick up her water bottle and carry it out, softly singing Jesus Loves Me. Not a peep. Five minutes later three little bits of noise, then utter silence. Wow!
Momma is not back at the given time, but she knows I will be cool with it. She calls as soon as she heads home to check on things and apologize for running late. She comes in and had a wonderful evening. We talk a bit more about all of Autumn's antics, the new animal sounds she has learned, and I let Elizabeth know about the "bracelet". Oh, she is glad to be prepared for that in the morning. I hug my beautiful daughter and pick up my few things, knowing she has to be at work early tomorrow. I put on both the hoody and the jacket. As soon as I walk out the door, I am glad I am dressed warmly. The wind is whipping and the temperature is well below the temp when I had gone inside.
Now home to say hi to hubby and give him a rundown, then as he heads back to work on dictation I come to see if there is anything I might want or feel the need to respond to.
It is amazing that winter has waited so long. Usually we barely get to October before things are this wintery. I appreciate settling into this cozy little three bedroom home Jim and I have lived in for 35 years. Over those years, there has been steady progress to stop the wind from coming under the door, the drapes from freezing to the windows, and many other things that were characteristic of our first house 35 years ago. Now I am grateful that Jim has installed a garage door opener (and just replaced the first last week) so I can drive in and put the door down before opening my car door.
Great day - morning work, rehab, touch base with Elizabeth, grocery shop, check HVS site, enjoy some time with Autumn and Elizabeth, head to a cozy home and see Jim, then come back to close out the night with all of you.
May you sleep in comfort and be closer to your goal of good health tomorrow. I am so thankful to have this second home and family. God bless you all!
So much to do -- So little time! November 10, 2014
Journal posted on November 10, 2014
The list (my list) is always long and never finished. I remember as a child that Dad had a small notebook with a spiral ring at the top. Unless he had it out, it rode in his back pocket. An engineer by training, he carried a mechanical pencil and would add new items and cross off those done. Now that I think about it, that was a good way not only for him to stay focused, but also to be able to look back and see all he had accomplished. I don't have a little book like Dad's, but the lists fulfill the first part of his books.
Today - market changes - it is Monday morning after all. Then some reading of fresh e-mails (only 2 or 3 out of the 300+ there will be today.) I type and search for the few amidst the masses, then will do a run at the masses much later today, hopefully.
Came to HVS just for a peek and love the comments Terrie and Bob have added to those of Karen and Eleanor regarding my family. Yes, I am greatly blessed. I am rich in the best of ways, not having to do with money.
Just realized I have to get something in the way of food soon so can be comfortable for cardiac rehab. Probably the usual raisin bran with dried blueberries and unsweetened almond milk. (Did you know that almond milk can be kept unrefrigerated until opened and has about a two year expiration date? It also has twice the calcium of cow's milk and fewer calories. For those who are lactose intolerant, this has none. If I want to sweeten it for some reason, I use Stevia. The sweetened is with cane sugar, which I do not need.)
Want to scan and e-mail several pages to one of my sisters. Jim this morning mailed out a long federal form with a deadline. I had filled it out and sent it on April 4 (keep my copies), so it was not hard labor, just irksome that they have probably lost the first one. Who knows?
Then have not heard from Elizabeth except to know Jeremiah is hunting for several days. I will check tonight or, more probably, after rehab to see if/when I am needed. Hoped to take Autumn for a walk yesterday, but E was bowling with their small group from church - child care provided. Wish I had known sooner. I would have visited with Autumn!
Got a fair amount of professional reading done late yesterday after a frustrating day. Jim was on call all weekend and I had still not heard from him by 9 PM. Turns out they had to take a case to surgery late. Wish he had called before scrubbing in. I am more likely to eat if I know he's not about to walk in the door. Past 11:30 before he showed, ate quickly, and promptly fell asleep.
Physician's spouses (depending on the specialty) have to be fairly independent, spend much of their children's years as single moms (or dads), and, if well enough to go out to dinner, know that there will be times when if a second car was not taken they will need to bum a ride home with someone there, or if only out with spouse, finish a meal alone and get themselves home. I never intended to marry a physician, but fell in love with the man. (He was just starting med school as we were first dating, so who knew? He could have been a radiologist... What a joke!)
But he loves surgery and taking care of people -- it is just the increasing time spent doing documentation, the frequently changing federal regulations, and the politics that he does not like. I have told him several times that he could take a tech class in mechanics (he fixes all of our cars and the kids' cars and just found new seats for Steven's car, which is newer than mine but had wearing seats). Then he would be home nights, off after Saturday morning, actually get time for vacation, ... The response is that he loves surgery. I am so glad for that, and I know his patients get top notch care. And thankfully after spending 18 years on two trauma teams, he is out of that. It helps. He is an unusual man for a surgeon. He is thoughtful and soft-spoken and gentle and is actually humble. The latter is rare in surgeons.
So, looking on, part of all the paperwork is that I handle all of the bills and most of the rest of our 3 to 4 inches of daily mail. We recycle a lot and shred what we must. The actual trash can gets much less than the recycle cart.
And now that taxes are out of the way and the federal form finished, I need to start pulling together and putting into the computer expenses so we will not have another tax nightmare for 2014. But I have decided to start that next week (if I can hold myself off -- strong work ethic in my family!) and hope to see Autumn and my family and celebrate two birthdays (both on same day with 5 minutes between the births!)
I appreciate each of you so very much and wish we were all within a short driving distance from each other, but no... So I think of each of you and send my love and lots of hugs and pray your health continues to improve and each day you are a little stronger, while still taking time to see the small miracles God puts in every day. I feel so blessed to know you! Ginger
Cardiac Rehab in a little package - November 7, 2014
Journal posted on November 7, 2014
I must say that I continue to enjoy the cardiac rehab I get when with my little Grand, Autumn, more than any other kind! Yesterday after a morning of doing paperwork, I went over to visit Autumn as her Momma's lunch hour was ending. It was a beautiful day here and there was some swinging going on out in the backyard as I arrived.
Momma had to take off and go back to work, but she did us a favor and took the stroller (which I call the Lamborghini) out of her car's trunk first. Autumn had her white sun hat and white fuzzy coat and a bottle of water. Granna had put on a dark pink zip up hoody, sunglasses, and the requisite bottle of water and we headed out. I'm not sure how far we went, but we saw American flags flying, found a bright red leaf that had fallen from one of the trees, and on one of our circuits got to watch a big flock of birds drop into the neighborhood trees for a short respite and bite to eat before swirling into their formation and heading back out. Then we watched as some sprinkler men forced water out of one of the nearby sprinkler systems. Very fun!
I think we both benefited from the fresh air and the long walk for Granna. Then we went in and
we played with the new kitchen set that Great Aunts Beth and Patty gave Autumn for her first birthday. Autumn is big into stirring things in pots and plopping things in to the oven, then pushing buttons to get all operating.
There was a big fuzzy Pooh blanket on the floor, and Autumn would take a short break, lying down on it. Then she would get tickled by Granna, who has the advantage of watching Momma do the same and know just the right spots and the right sounds.
Then for a snack, we played Hide the Cheerios, and Autumn figures it all out and plops them into her mouth. She loves Granna's bag (which usually has something fun in it). Yesterday that was a stick of mozarella string cheese. Oh the smiles and squeals of excitement and clapping as the surprise is pulled from the bag. We share the stick, and Autumn is learning to pull the strings off and plop them in her mouth. She will often stop and try to feed the cheese to me, but I touch her lips and then she will eat it. Autumn now sports four full teeth with two more lower teeth part way in!
Then a favorite thing I am just getting to do -- Autumn realizes I am following her and starts to squeal and run. I have see Daddy do this, saying "I'm going to get you!" Granna thinks that looks like fun and now that I can easily lift all of her 19 pounds, we had a great time chasing around the house. Once grabbed, I fly Autumn to the Pooh blanket and let her down gently. She is squealing and laughing -- a perfect time for tickling! She rolls and laughs so hard her big blue eyes can barely be seen thanks to the huge smile and cheeks on her happy face.
I look forward to spending time with my family, and am grateful they all live nearby. Son, Steven, just closed earlier this week on a home he had built. I have been privileged to see it in various stages, and am looking forward to seeing it with painted walls and finished cabinets and counters and his furniture moved in. It was a big undertaking, but he did some great looking, got a great deal on his lot and location, and did a fair number of things to make the house fit his personality and needs. All of the cables for the massive work he does with computers are hidden in the walls, with many outlets throughout. He also put a large room with window over the garage to serve as his office, since he works mainly from home. Needless to say, I am proud he is thrifty and was able to accomplish such a big task, hiring his own builder and various crews and working with the banks, mortgage people, appraisers,etc. I think this will allow him to have peace when he needs it, a comfortable place to work, live, and entertain, and comfort and convenience when the winter storms arrive.
And to each of you, I pray that you have a comfortable night and each day brings you closer to the health you strive for.
I am so grateful to be three months out from surgery and enjoying cardiac rehab. I have also had many new opportunities to be with my Grand Autumn! Date Night, Meeting one evening for Momma when Dad was working at the fire station, and afternoon of day she got her shots, when Daddy had something planned (that could wait until rehab was over).
Autumn has seen me enough lately to be able to wave Bye Bye to Daddy without crying and to pick up a book and bring it to Granna and sit on my lap to read with her (and also to notice she was running a bit warm.) Yes, a low grade fever. Decided that by then Momma would be home in an hour, so waited so she could double check and get out the Infants Tylenol. We kept busy with books and playing, ice water offered frequently, and sharing one of Granna's sticks of String Mozarella together. The first time I tried it with her, Autumn would eat anything I handed her or sometimes could pull a string off after I got it started. This last time, despite fever and all, Autumn took some of the pieces that were for her and stuck them in my mouth! I wanted to be sure to get something in that little tummy, so sometimes I would put my finger to her lips and she would pull the cheese back and put it in her mouth. She also spent some time practicing with her Orange Jack-o-lantern bucket, carrying it and putting toys in and taking them out!
Last year I supplied the costume for our then one month old. This year Momma is making a costume. Can't wait to see it!
May you all have a safe and happy Halloween, with more comfort and a healthier day tomorrow!
October 26, 2014 - Autumn now over a year old (barely!)
Journal posted on October 26, 2014
Autumn and I had Date Night at her home last night while Momma and Daddy went out for their Date Night! After being outside almost all day, Autumn was insatiable. She whipped through the peaches Momma had set out, then all of the avocado. (We use two spoons and right now she is mainly stirring with hers, although if I can get some food off my spoon into hers she pops it right in. Then she dove into the plate of chicken. With four teeth, the chicken is in very small pieces! I ask for a pause and she accepts her water to wash some down. As the plate was emptying I lifted it to see what might be under it, as Autumn's mouth was asking for more. Yes, some chicken and avocado to add to all she had already eaten. Now what!?! So I offered her the peach juice left in the little plastic container and she did a great job of drinking it down with me holding the small bowl like a cup. And - Autumn points to kitchen counter. This is not the "all done!" sign; it is the "what's next?" sign! Her momma had mentioned some Greek yogurt in the fridge, so I excused myself to get out the yogurt and a clean spoon to dip some out. I put it into the peaches container, and sat and spooned some up vanilla yogurt for the little mouth that was wide open and waiting. That bit of getting more yogurt was repeated two more times! Ravenous! (I put the yogurt back in the fridge after getting the third helping or it would have all been eaten!) After chugging down more water out of her sipper bottle, the bib came off and the large tray was set on the cool stove top.
Then little gooey hands are up to be lifted out of the high chair. Next we "Fly" over to the sink and Autumn puts a hand into the water once it is running and lets me help get it clean, then the next hand, which from her position on my hip is partly clean from hanging onto my shirt, comes out to be washed. One bright little face still pretty sticky, and I wet a bit of the paper towel Momma had left for us and Autumn seemed relieved that I did not do my usual, which is scooping water up in my hand to clean her face. (The things Grands have to put up with when a Grandparent is left in charge!)
Still on my hip, we carried parts of the plates, utensils, bowls, and soft flexible place mat a few at a time over to the sink and washed them off and set them to dry. Autumn's big blue eyes miss nothing, and she talks to me (and I to her) as we wash up. Last step is the big white tray from the high chair. We manage it and soon it has been sponged free of chicken and avocado bits. Each item gets a visual inspection from Autumn before I am satisfied it is clean and can be set down to dry. Then the very loud garbage disposal, but I know Autumn likes to help Momma and this will not frighten her.
Later in the evening I will realize that I could not have done what I did tonight even three weeks ago!
Now we have an hour until bedtime to play, read books, and push a toy shopping cart. Autumn pulls down her big Winnie the Pooh soft fuzzy blanket and sets it in a heap on the floor. She rests her head on it, and reminds me that bedtime is coming. Then back to Granna's lap to repeatedly read two books and slow down -- just a little.
When it is bedtime, I announce that it is bedtime. Autumn is standing over by her stash of toys holding a book. I head back to her bedroom and tell her to come with me. She follows me into the bedroom without complaint. This is a first for us, because Autumn would MUCH rather play than go to bed. I have always had to carry her in in the past! Fresh diapers and pajamas are exchanged for what she had been wearing, then time for one more book in the rocker in Autumn's room. It is upholstered and very comfy. After two full readings of this big book full of animal pictures, with sound effects all the way through (most from Autumn), I put the book down and say it's time for bed. NOW is the Moment of Wills! Will Autumn stay up longer or will Granna put her to bed? Granna knows the answer ahead of time, and Autumn is soon in her crib with one of her cuddly sleeper companions. A few soft rubs to the back, soft words including her name, good night, and sleep, the vaporizer is turned on, and the door is gently pulled shut.
Quiet -- possibly as long as 30 seconds, then wailing calls to be freed from the prison of her crib. Ten minutes later as I had finished picking up toys and moving them back to the pile, real quiet.
I knew she was either asleep or... My imagination stops me there. It was a very fun night, and turns out Momma and Daddy had a good evening, too, then Aunt Kristin and Uncle Matt come in from the wedding and reception they had attended, and I finish packing my backpack and giving hugs and kisses to this incredible group of young adults. Yes, I love them all very much. Then out the door to my bright metallic red mid-sized SUV.
When I get home, Jim has just arrived after spending the evening with Steven inspecting progress on the house Steven, our son, is having built. I take off my shoes, then my wind pants and, voila, Pajama pants on underneath and I am close to ready for sleep. Achilles stretches and nighttime meds are almost the end. But Lacie, our little furball cat, has been sleeping in her bed nested on the bottom of our bed. Lights out tells her I am done messing around and she can depend on my staying put in the bed. She gathers herself up just enough to climb out of her nesting place and onto the soft blankets I am under and settle in. She knows she will find warmth and gentle words and some rubbing before I drop off to sleep. This is really bedtime...
I was talking by text to my twin earlier this week, and told her something really BIG has happened, although it was all done incrementally. For the first time in four years I really feel like a Farley (our maiden name)! I am moving well, driving, have been to the grocery store by myself and even sent some UPS, then realized I have been singing either out loud or to myself all week. And, Priority One!, I have had a date night with Autumn twice in one week! Patty totally understands. She has four Grands now, and has conquered her own health issues. And she knows what being a Farley feels like -- pretty awesome.
I know I have plenty ahead - I still am working on my shoulders and stretching my Achilles and my sleep is like a rock, but not for long enough each night. It will be a while before I am comfortable on the stairs I had to avoid for three years. But what is behind me is so much greater than what is yet to master!
And so I thank you, family, friends, Heart Brothers and Sisters, for your prayers, support, encouragement, and words of wisdom. I would not have come so far so fast without each of you!
Halloween marks three months out from surgery. It also marks four years from the day I had to resign because of my health from a job I found immensely satisfying and stimulating. I am celebrating the three months and moving daily further away from the latter.
Bless you, every one! May each day find you closer to your goal of good health, nights of comfortable sleep, and feeling the Joy of Life!
Selfies of Scars? -- Offensive??? -- Educating our pre-op pe
Journal posted on October 23, 2014
Please people - THINK!!!
For POST Valve replacement patients, I suspect seeing this plethora of incision photos is not causing too much discomfort. Each of us has a scar, and we have a right if we so choose to consider it a badge of honor.
But we need to respect ourselves and those just coming in. I have worked in medical research and ethics all of my life. I do not believe an Ethics Committee would approve of the concentration/focus on scars/incisions. I suspect that even FaceBook would find these to be inappropriate and not show them or would pull them. I realize our mission is different from that of FB, but I for one do not believe we are thinking of and respecting others.
TO PRE-OP VALVE PATIENTS, I QUESTION THE VALUE OF ALL OF THESE:
What a turn off for someone who can barely stand the sight of blood or to get their finger pricked to see photos of scar after scar after scar after scar after scar, ad infinitum.
If our mission is to HELP the pre-op people learn about Heart Valve Surgery, how many scars must they see? I have members of my own family, whom I dearly love and who I know share that love who will NOT LOOK at my incision/scar - whatever stage it is in. (And to me, it is very good looking!) Everyone is different, and this current wave of photos does not, IMHO, respect another's right to choose to look or not! These pictures are currently in the process of monopolizing the site. This is a shame, and maybe even shameful.
The price we pay is that we are, without question, already losing some pre-op patients because what they are seeing now leads them to believe that this is one of the priority learning tools of the website! And they DO NOT want to see more...
Consider the analogy of not seeing the forest for the trees: Being barraged by scar selfies takes the emphasis away from respecting ourselves and others. It implies that there is little else to be found on this website. It may even cause some (?many?) new visitors to decide not to return.
But the forest is fabulous! The opportunity to share feelings and pose questions one may not be willing/comfortable to ask elsewhere, the relationships that are built and the changes that education through the community and learning center achieve are now much too easy to overlook!
I consider myself very fortunate to have been educated, comforted, relieved, and to be more prepared for surgery without fear thanks to those who went before me and shared their experiences. And even through the early post-op period, posting my concern as each came up and I wondered 1) whether this is in the "norm" and 2) whether there is some way I can either change my behavior or taken other steps to care for myself and alleviate my fears, was not just helpful, it was tremendously comforting.
At cardiac rehab yesterday, a new part was added to my program. Once again, starting yesterday about an hour after rehab, my shoulder pain came back and I feel it every time I inhale. But thanks to this Heart Family, I know that this is not something no one else has dealt with. And I have several things I now know to do to minimize the issue until it resolves.
I am greatly saddened by all of this. I know several people who have just recently learned that they will require a valve replacement. One who lived next door to me while our children were growing up came over to talk about how I amassed all of the information to educate myself. My first answers were the website and the book. We got onto the website and she was gagging with the sight of all of this abnormal flesh. She is coming back, but we will go about things in a different way. There is no question that she was offended, and if we did not have such a good, long term relationship, had she come to the website as it is now on her own, it would have been a single stop, then never again.
RESPECT - I can hear Aretha singing it! Respect for one another and ourselves used to be a hallmark of HVS.com. We didn't talk about it, but it was always there. We are in great danger of losing it. Yes, I do have a sense of humor, and I believe levity is often part of the mix that is needed. We just need to remember who we are and why we are here. I think of all that I learned from Tony and Eleanor and Terrie and M in Cornwell and Lynn Q and Geri and Kelly and Julia and Bob O, to name just a few. Yes, they sometimes made me laugh, and it felt great! But they also counseled me, recommended contacting others in this big Heart Family who had experience with what my "Issue of the Day" was, encouraged me, and, to be truthful, cared for me in too many ways to list. I am so grateful and feel tremendously blessed. I do not believe I would have fared nearly as well without each of you.
Now new people are coming onto the website. Do they deserve less???
I ask that some self-control be exerted so we can take care of those who are making the same journey we have, but later in time. Will we be there for them? Can we even find them with all of the recent "entries" cluttering the site? I don't see anything in the Mission about competition. I think it draws away from building positive relationships and trust.
Wow, It sure feels good to have a great day! October 15, 20
Journal posted on October 15, 2014
Due to a series of almost unbelievable links (Kind of seems my whole life has been that way for at least the last four years filled with brain injury issues and cancer and five major surgeries, only two of which were related) a tremendous relief of Yes, getting all of the taxes filed on time.
I must say that were it not for my sister Beth, who is the smartest, sharpest CPA, really the best or why would Jim and I be shipping all kinds of tax related documents off to Phoenix from Oz for decades?, the deed could not have been accomplished by today.
I would literally kiss Beth's feet, but she is far too classy and sensible to let me do it. Instead I keep her in my prayers, send her flowers, and feel so blessed to have grown up in an environment that encouraged growth in every way, intellectually, emotionally, physically, etc., and that included my precious sisters, one of whom will always be the "baby" to us. This young woman traveled a large amount of the world on her own after working just enough years to afford the trip, and she is a strong, independent soul. Runs her own company and has been volunteering, going from a Survivor Supporter at Hospice of the Valley to Treasurer to President before she was married and became a Mom. (I am prejudiced of course, but I am so proud of her. I am proud to be her sister!
The tax links:
1. Taxes had to be put on an extension because a large national broker was unable to get 1099s that had to be included to us before the April filing date. I had been working on them like a madwoman (Yes, they made me mad!) When it became obvious that an extension would be required to October, I shook my head and, so as to lose nothing completed up to that point, decided a break was necessary just for sanity's sake, laid a linen cloth over the half of the dining room table where the work was occurring. I expected to get back to them after a short break, but did not want wandering eyes see our financial affairs OR have Lacie, our cat, pad and slide on them during the short break.
2. Life so often intervenes and, at least certainly for me these past four years, gets in the way of all that I am planning to do. So there was a period that, like As the World Turns, became As Life Interrupted Further Tax Prep.
3. Examples include my cardiologist informing me after ten years of echos and appointments that it was time to get acquainted to a valve surgeon who was an experienced expert, at a valve center with documented evidence of expertise including excellent outcome data and low morbidity AND a neurology department that was as good in their specialty as the valve surgeon and center. And most of you know that this is a huge life challenge that takes time to assimilate and be prepared to undergo.
WHY all the specifics on proven expertise? Over the ten years my cardiologist became aware of the continuing issues I lived with as a result of a traumatic head/brain injury. He counseled me about the central nervous system effects that a major cardiac surgery can cause in patients who do NOT have brain/head injury issues. In his excellent care of me, he believed I needed to have minimal time under general anesthesia, minimal time dependent on the heart-lung machine, with a valve surgeon who had done thousands of the procedure I needed. And this was because such a surgeon would be able to work efficiently, would get in and possibly find an abnormality and not spend an inordinate amount of time figuring out how to handle it, and would consult with neurology as needed for care beyond the field of cardiovascular surgery.
4. I anticipated having all the time to October to get the tax work finalized. WRONG! See Item 3 above. I could not envision a need for the heart valve surgery until after October.
I have been doing various forms of medical research throughout my career. This was a more personal bunch of research, but I left no leaf unturned. I truly believe that God led me to the Cleveland Clinic and Dr. Lars Svensson. What amazed me was that when I found him, he not only agreed to take me on as a patient, but also:
--Saw right away from the echo information I had quoted in my written request to him that my heart valve was not simply severely stenotic -- it was critically stenotic, AND
--Has research interests and expertise in care of a patient who has my additional issues -- he has been researching protecting the brain during cardiac surgery! I felt like God had made Dr. Svensson just for me. His knowledge of the brain delighted me, and I knew that both my heart and my brain would be in the care of the exact surgeon God meant for me.
Another really wonderful thing was that Becky McC, Dr. S's nurse, turned out to be a kindred spirit. We ended up doing a lot of e-mailing in the short time between decision to operate and when to arrival in Cleveland, and she was just tremendous. She could not have possibly been better in any way!
Dr. Svenson's recognition that my valve was in critical condition speeded the pre-testing and surgery up a number of months to the end of July. That added to the stunning, surprising news I needed to process and assimilate. The explanation was sobering -- my valve was now critical and had to go before it closed or got close enough to cause sudden death. Major testing including a heart cath occurred over a three day period in the end of July in Cleveland. NO, I did not take any of the tax work with me to Cleveland. :o) I knew I needed to focus on my heart and all I could do to stay calm, get through all the testing, etc., and be prepared for my fifth and riskiest surgery in that four period. There were no less than eleven (11) different appointments, tests procedures and lab on Day 1. By the early AM of Day 4, I was headed into the operating area.
5. So that seemed a reasonable (Truly unavoidable) thing that had to be done before going back to taxes.
6. I am hesitant to admit this, but I woke up with a new heart valve in the Cardiovascular ICU and within the first 10 - 15 minutes, I actually thought about the taxes. I was out of the ICU in less than 24 hours and was using my very functional cane through the rest of my short hospital stay. My thought was that after a week or two, I would feel well enough to.....work on taxes!
7. The dose of the beta blocker I was started on right after surgery to prevent stroke and A Fib lowered my usually normal blood pressure down enough that I was not thinking as clearly as I thought I would be able to. (It feels like a fuzzy brain.) It also increased my vertigo (From head injury and heart valve before surgery) to a point where it was constant, I had to make myself eat because I was so nauseated. I was not getting around the house well and was not able to think clearly enough to do any work except keep paying the bills. The other effect from the beta blocker was fatigue added to that normal for this post-op early recovery period. Bet you get my drift.....I was unable to tackle the taxes.
There seems to be a theme rolling through here, but it was NOT procrastination. Yes, taxes...
8. I saw my cardiologist two weeks after arrival home. I showed him the logging I was doing daily of blood pressure, heart rate, and weight. He saw but did not remark on it. Three weeks later I saw my new FP three weeks later, still in a vertiginous state, some fuzz in my brain, she was pretty surprised when she looked at the trend in my daily log. She could see that my blood pressure was consistently low enough that it not adequate to fully oxygenate my brain. A short discussion as to what was going on, what did I want to do to get a healthier BP, and bless her, Dr. DeHart cut the dose of my beta blocker in half starting with the next dose. Just a few days and the nausea was gone, I could eat without fear of losing it, the vertigo WENT AWAY! (my prayer for what I wanted to achieve with the new valve), and my thinking sharpened.
9. There was less than a month left before the tax deadline, but my brain was in gear and the fatigue had lessened. Patty and Beth, two of my very capable sisters with plenty of their own things to do -- came from Phoenix and Nebraska for four nights and most of five days!!! And while they should have been reading and relaxing on a beach somewhere, Beth and I did taxes and Patty worked on things I had been unable to do with all the surgeries and recoveries -- four years of paperwork! Patty, my Twinnie, found the top of my desk in my study!! We worked like fiends, barely coming up for air.They came in Thursday afternoon and stayed until Monday.
We gave ourselves Saturday off to attend the First Birthday of my Grand Autumn and to celebrate what would have been our dear Mom's 90th Birthday. We laughed and enjoyed that beautiful Child of God, then we went and made a dash to the house and were out again, this time having wine and fine fish outside a grill at a small lake. There was live but not obnoxious music. We reminisced and laughed and laughed. The female trio was great and singing songs very much from our era. Pretty soon Patty and I were singing along. Beth is a little more reserved that her sisters, the Twins, but she put up with us and we all had a great time! We love to be together and all are able to work in a complementary and supportive, coordinated way.
Daughter Elizabeth generously made time to come on Sunday afternoon with Autumn. We had been at the party the day before, but it was a big bash! It was Beth's first time to meet Autumn in the flesh, and Elizabeth recognized that this was the best way for both the girls and Autumn to get to know one another and be comfortable and have fun. Great Aunt Beth knows where the little packets of Club Crackers are kept, and she and Autumn made three trips over to get a packet of two. Fast pals! And Autumn played with the big Pooh bear her Momma left years ago and with Snow White and the Seven Dwarf figures that are just the right size for Autumn to hold and move around! It was a great visit, a perfect break, then we three Farley girls were back to work just a bit more. Beth took some tax info back with her, but things were definitely looking up!
The amount of work that was done was amazing. But we had been reading aloud to each other and doing jigsaw puzzles together and playing some mean quadruple solitaire since forever ago.
Then Monday, Patty drove Beth to Kansas City to catch her direct flight, then drove back to Elkhorn, Nebraska -- right outside of Omaha. So sad to have them go. But what a sense of accomplishment we all had!
10. This past weekend, with a Wednesday tax deadine, Beth did more work than....well, it was really bad. But by Monday we were on target to E-File. Nothing could stop us! Right?.......WRONG!
It is Tuesday afternoon and Beth calls me. She has E-Filed for us for years and filed for the extension that way. Tons of data in her computer ready to go. WHAT? Rejected?!? WHY? Wait a llittle and try again. No big deal.....Call again......REJECTED?!?!? Reason given: Head of household SS# had already been used on a different filing AS THE SPOUSE! SAME REASON X 2!
OKAY, I have had time between calls to give it some thought. When Beth tells me of the second rejection, I tell her I have figured it out. Jim has another wife stashed somewhere and she filed as head of household and put Jim as spouse. We both burst out laughing. I say, "All those times when he says he has to go back to the hospital or doesn't come home for the night!!!" Beth says, "Don't tell him we know! We'll keep it a secret until we have the hard evidence!" Hoots of laughter!
Realize, these are two grown women who know the ramifications of not getting the taxes filed by the deadline and don't yet have a solution. Two brains at work. Ideas. Calls back and forth. Final decision, keeping in mind that these need to be signed by two Kansans and one Phoenician if not E-Filed.
Tuesday night tests sending the two signature pages by fax and by e-mail after scanning. Which looks better? I describe what I am seeing to Beth in a short text with my impression. She agrees. I shred the set we will not use. Now we have to wait and hope Jim gets home to sign his part, then we will both fax and e-mail scanned copy to Beth and she can sign the best one. She will have to print out the entire return the next day, deadline day. Then get them into the mail.
It is late but Jim gets home. He understands with brief explanation. He signs and dates, then does the fax and e-mails the scan. I text Beth that they have been sent. Text back "Got 'em!"
Still, lots for Beth on Wednesday, today, as I watch the stock market continue to drop.
I'm at cardiac rehab with cell turned off and miss call from Beth. [Second day of cardiac rehab fine. Small issue - some flare up of both Achilles' after months of physical therapy right up to going to Cleveland. Even iced them the night before 5:15 AM surgery time. Start stretches and compression hose back on during days. So all went fine.
I hear Beth's message. She is leaving to mail our taxes. I have been praying for her that all goes smoothly and she can finally relax.
Beautiful Autumn (I don't sat fall anymore :o) day, windows and sunroof open some. Drop off mold for Dentist. Drive down to MD's because flu vaccine in. Waiting room texting Beth the day's events. Get called before text ready. Get the 4 strains vaccine (avoid just the 2 strains - want coverage) and head out. Car with hood up in parking lot. Call to see if they need a jump. YES. Move my car as close as I can get, but there is a truck on either side of dead car and cables cannot reach. Man w battery problem says he can call insurance company and get a tow. Tell them if someone comes out for one of the trucks, will take that space and help if I'm still here. Dead car won't go into Neutral so cannot move it out. I put cables away, get back in car, start to pull out --- guy comes out and gets into one of the trucks. YES! I drive over into the space he just vacated.
All set up, dead car is resurrected! YES! Good day going! Head for home. Pull over on way and finish text to Beth. Send.
Stop at Wendy's to pick up salad for dinner and a surprise for Jim (not salad eater) with chocolate frosty.
Home. Mail, Paper, and rest into house. Toss things down, Frosty to freezer. CALL TO BETH! She has mailed the taxes and as she got home there were some flowers outdoors (We sent BIG bouquet to be delivered today). She tells me she thinks she'll take the flowers in, it's something she would do, she says. I agree, they will brighten up as soon as she takes them inside. I tell her how grateful I am! She knows. I had sent text to encourage in AM. Love my sister, my sisters, my Farley sisters and my friends who have become sisters and my Heart sisters! I am blessed! Life is good!
I can do rehab, drive, run errands, help others, smell the crisp Autumn air. (Hard freeze last night so all friends with allergies will be able to breathe it in!) Yes, Life is Good, God is the Best!
Love to all my Heart Brothers and Sisters! Each day is a step to comfort and better health. For me, this taxing day was exhilarating and I can sleep in till 8 tomorrow. Today it was 5. :o)
And if any of you read this entire encyclopedia, you have earned a shiny heart sticker! Tee Hee!
I am once again (two months out) having pain in my shoulders when I inhale. There's a lot of information on the site that this is normal, and my physician checked it out three weeks ago and told me it was from the surgery and it would take a long time to go away.
Just wondering if others are having this issue this far out. BP and HR are okay.
This is Olga's surgery day. Please remember her in your prayers, that she will not be anxious but be comforted, she will ask questions when not understanding what is going on, for God's leading of the surgical staff, and for successful outcome. Also comfort for her family, as her mother and sister will be there as well as Daniel.
Two things are coming along as signs of progress. The first is that I am finally in low enough vertigo shape to start cardiac rehab. Monday October 13 is Day 1 of three times a week for six weeks. Actually looking forward to it!
But even better, we had a successful Date Night tonight. Contrary to the usual meaning, for me Date Night means I have a date with my Grand, Autumn, at her home and her parents, Momma Elizabeth and Daddy Jeremiah have an evening out to themselves. Tonight it was an errand, dinner, and a movie.
It has been about three months since I was last able to offer, and I have been looking forward to it for quite some time. I know there will be more in the future, as every young couple should have some times to themselves.
And for Autumn and me, it's a time when Granna helps her wave goodbye as they back out of the driveway so no tears are flowing, and we start play! Autumn has an even bigger selection of books, which she loves, since her birthday was just celebrated. And two of her great aunts - My sisters - gave her an incredible kitchen set and lots of fake food. We got out and washed off the hamburger, lettuce, tomato, cheese, and two half of the bun along with a bottle of Coke and a bagel, cut in two. Elizabeth said Autumn was teething again, and boy, did she love chomping on her new fake food - especially the burger and tomato. We read books, she pushed her baby stroller (with the cola bottle in it, then the baby doll on top!), rode her fire engine, and then headed for dinner.
Autumn is a good eater. She has to be with all the energy she burns off in her constant motion. Pasta salad, then cottage cheese and cold water to slake her thirst!
I got her cleaned up and we played just a bit more before the yawning and rubbing of eyes and temporary breaks to lie on the very fluffy stuffed puppy began. Signs of bed....
We did a second diaper change, put her jammies on, rocked a minute and read a book, then she refused her bottle or even breast milk out of a cup (she is ONE now, after all!), so after a hug or two I put her into her crib with her two crib comforts (both small soft, plush, very safe small blankets with "heads" in the middle.
It feels so good to have our little one bringing books over and climbing into my lap again. No question there will be repeat performances.
My best to each of you with prayers you are attaining your goals - better health, comfort, great sleep.
My best to you all, Ginger