I have had a new friend come into my life over the past year. Her name is Addie. She is a beautiful, amazing, courageous, funny woman. I am incredibly grateful for her friendship. Today she sent me an email with a poem by an anonymous author. It brought huge crocodile tears to my face and inspired the wings of my soul to take flight. Thank you Addie.
Here is the poem.
Behind the darkest cloud
of the dreary Winter chill
is a Springtime
begging to burst forth.
Bless this pain
for it will bear its perfect gift
to you in its perfect time
Out of your yearning
for comfort, calm,
growth and belief,
out of an aching void,
comes a divine mystical force
It longs to thaw
the frozen Winter
of your grief
for the invisible world of Spirit
will be your greatest power
with which to heal
Know beyond all knowing
that through the power
of the Spirit within
you will befriend
your highest Self
The exquisiteness of this Friendship
leads you to realms of compassion,
humility and service –
to a fulfillment
you never knew existed
into a holy instant of Springtime –
of harmony, creativity,
and the opportunity to once again
master your life.
It is important
to be ever so gentle,
kind, loving and giving
to yourself right now
and
to let others
be ever so gentle,
kind, loving and giving to you
Remember how deserving
you are
of gentleness, kindness,
lovingness and givingness
No one ever said it was easy
to let go, let be, let life do
what it is supposed to do
Perhaps you feel
you are the only one
in the universe
but out of your loss
is an interconnectedness
with all humanity –
for you are One with everyone
who has ever mourned
When you live fully,
your vulnerability takes you
through the shadows of Winter
where you feel you may never
see the sun again
To cease living fully
because you fear the Winter shadow
is never to see the sun at all
Judge not
the appearance
of this loss.
-author unknown
Thursday, December 9, 2010
Tuesday, December 7, 2010
A girl and her dog
Adelaide absolutely loves our tiniest dog, Midge. I should also say that Midge or Midgey Poo absolutely loves Adelaide. It is so sweet to watch them play together. Midge sits patiently while Adelaide dresses her, feeds her, gives her pretend baths, hugs, snuggles, loves and really treats Midgey like her best friend and sometimes like a doll. The two can play together for hours. What a patient dog. As Adelaide says "That Midge is really something!"
Tuesday, November 30, 2010
Love, Nourishment & Healing
The beautiful snowy weather is upon us. We have been blessed with so many snowy days this year, the kind of snow that hangs on the branches, illuminating the forest. I love the contrast in colors, the dormant trees, dark and earthy against the fresh white gift of water to the earth.
I have been seeing pileated woodpeckers, bald eagles and chickadees often. The pileated's are so grand, it is wonderful to watch them flying through the air. They look like a prehistoric bird. All of those birds remind me of my Grandparent's, Da and Papa. They loved watching the birds together. My Grandfather would get out the binoculars to watch the baby eagles learn to fly above the cliffs. Chickadees are Da's favorite bird, mine as well.
It has been awhile since I posted anything. It is for a good reason however. I have been feeling good and just have not been able to sit down at the computer and write. It is wonderful to fill my days with things I want to do, even if they are chores, it is still great to be able to do something!
My water weight is still very hard to manage. When I am able to get my body on the dryer side, I feel much better. This seems to be about 2/3 of the time now. I can breathe, walk, move, play, drive.
I have been going to cardiac rehab 3 days a week. I have been doing great. My stamina is improving. I am able to do more and for longer periods of time. It is very motivating as it really does make me feel better. It is time consuming, but I have started to think of my health care as my job. It takes well over 40 hours a week to manage my pills, do my nebulizing treatments, go to & make doctor's appointments and blood draws, go to cardiac rehab, get the extra rest I require and make sure I have the correct foods for my very limited diet. It has been easy for me in the past to put some of this off, not taking care of it so that I could instead take care of my family or make money. What I have realized however is that if I do not dedicate this time to my health, I will not be here for my family or for myself. My body needs a lot of love and nourishment. I need to remember this and try and look at it that way rather than as being "sick". New positive affirmation maybe? Now repeat after me, haha. "I am worthy of the love and nourishment my body and soul need to flourish." "I am worthy of the love and nourishment my body and soul need to flourish". Sometimes I think talking to myself or I guess deciding what I am going to say to myself is corny. However, am I not constantly sending my body and soul messages without thinking about it? All of the messages that I have concocted in my head, good and bad, repeating tapes, habit, learned. If I can teach myself to truly feel this, "I am worthy of the love and nourishment my body and soul need to flourish", then I will be in a much happier space.
I have truly been blessed over the past month. Here are some of the things I have been doing.
P.S. I really like this (adapted) from Mary Wood
Bless these, our circumstances, Bless the hardship and the pain as well as the delight Bless the hunger and the thirst as well as the abundance Bless the locusts and the drought. Bless the things that do not turn out right as well as those that do. Bless those who take all and give not and also those who love. In these circumstances, find growth. In growth, discover clarity. In clarity, an inner vision.
I have been seeing pileated woodpeckers, bald eagles and chickadees often. The pileated's are so grand, it is wonderful to watch them flying through the air. They look like a prehistoric bird. All of those birds remind me of my Grandparent's, Da and Papa. They loved watching the birds together. My Grandfather would get out the binoculars to watch the baby eagles learn to fly above the cliffs. Chickadees are Da's favorite bird, mine as well.
It has been awhile since I posted anything. It is for a good reason however. I have been feeling good and just have not been able to sit down at the computer and write. It is wonderful to fill my days with things I want to do, even if they are chores, it is still great to be able to do something!
My water weight is still very hard to manage. When I am able to get my body on the dryer side, I feel much better. This seems to be about 2/3 of the time now. I can breathe, walk, move, play, drive.
I have been going to cardiac rehab 3 days a week. I have been doing great. My stamina is improving. I am able to do more and for longer periods of time. It is very motivating as it really does make me feel better. It is time consuming, but I have started to think of my health care as my job. It takes well over 40 hours a week to manage my pills, do my nebulizing treatments, go to & make doctor's appointments and blood draws, go to cardiac rehab, get the extra rest I require and make sure I have the correct foods for my very limited diet. It has been easy for me in the past to put some of this off, not taking care of it so that I could instead take care of my family or make money. What I have realized however is that if I do not dedicate this time to my health, I will not be here for my family or for myself. My body needs a lot of love and nourishment. I need to remember this and try and look at it that way rather than as being "sick". New positive affirmation maybe? Now repeat after me, haha. "I am worthy of the love and nourishment my body and soul need to flourish." "I am worthy of the love and nourishment my body and soul need to flourish". Sometimes I think talking to myself or I guess deciding what I am going to say to myself is corny. However, am I not constantly sending my body and soul messages without thinking about it? All of the messages that I have concocted in my head, good and bad, repeating tapes, habit, learned. If I can teach myself to truly feel this, "I am worthy of the love and nourishment my body and soul need to flourish", then I will be in a much happier space.
I have truly been blessed over the past month. Here are some of the things I have been doing.
- Adelaide was a pink poodle for Halloween, Matt an alien and Papa a weird, deranged looking guy. Mom and I were cute :) We got to go to the local fire station for a family friendly celebration, complete with games, food, candy, prizes and a bonfire. Then we walked down the main street in our little town and did some trick or treating. Papa even got a beer! The local cafe had an un-scary, cool haunted house. It felt so good to be out with the family and able to keep up! I love this small town living.
- Matt got 2 deer this year, a buck and a doe. He got them within 15 minutes of each other, which I think is really amazing. He worked hard at butchering them. He got one cut up for the freezer and I canned the majority of the other one, turning the rest into hamburger. It is nice to know that we have a well stocked freezer. We celebrated that night with a feast of venison, wild mushrooms and homegrown veggies. Nothing could have tasted better.
- Getting organized. I really got behind over the past few months. It has felt really good to get caught up. Enough said.
- I got to go to lunch to celebrate with some wonderful women. We were all in a program called Renewing Life together, 15 years ago. We have continued to celebrate and cry together since then. One of the women turned 50 and another 80. Spectacular. These women have had such an impact on my life, I am incredibly grateful to have them in my life.
- Healing. Healing is not necessarily a state of physical health. Healing for me is being able to live joyfully, to be able to focus on the moments. To let the future go and live now, right here, whatever situation I may be in. To be able to live it, feel it fully in all its glory and pain. It is what it is. Being able to experience it truly and authentically. This second, this moment, this is my life. I am not guaranteed any more time, but I know I have NOW. I am trying to use my "now's" wisely.
- Giving Thanks. Being Grateful. I have spent countless moments in awe of how truly blessed I am. May all of you know that I am truly grateful for each and every one of you.
P.S. I really like this (adapted) from Mary Wood
Bless these, our circumstances, Bless the hardship and the pain as well as the delight Bless the hunger and the thirst as well as the abundance Bless the locusts and the drought. Bless the things that do not turn out right as well as those that do. Bless those who take all and give not and also those who love. In these circumstances, find growth. In growth, discover clarity. In clarity, an inner vision.
Thursday, November 4, 2010
Breath
I never realized how precious my ability to breathe was until I was not able to catch my breath, walk 10 feet, sleep without sitting straight up or pick up Adelaide. I thought about it sometimes but breathing really is an automatic process, something I did not think about as I did it, something that just comes naturally, something that is an essential part of being alive.
When I was pregnant with Adelaide I had a hard time breathing. We did not know at the time that I was suffering from Congestive Heart Failure. Matt and I just assumed that was how I was supposed to feel. Then after the birth I had episodes. "Too much fluid on board" is what I thought, take some more diuretics is what my doctor told me. It usually went away. I dealt with it the best that I could, but it usually did not last for more than a day or two.
Well fast forward three years and backtrack about 4 months from now. For almost 4 months I have been sleeping sitting up, not able to walk, not able to go to the grocery store. I am not much for Walmart, but was grateful to be shopping there one evening as they had electric carts that I could ride in. People stare. I do not look like I should need an electric cart.
I have spent the last 4 months in and out of the hospital, emergency room and doctor's offices. Kidney failure, heart failure, multiple rounds of antibiotics, blood work until my veins were collapsing, right & left heart catheterizations followed by 22 hours of not being able to move a muscle (that was close to being in hell), a right heart cath through my neck veins that did not stop bleeding for 4 days, by the time they got it to stop, my skin around 1/2 my neck was peeled off and raw from the bandages, a bronchoscopy, many ct scans, and during that whole time I could not breathe. What is it?? The doctor's as they say are "practicing" medicine. Now I really can not complain, as I do have an excellent team of doctor's that are working with me. My life is in their hands and I do trust the team I have. However it is a process of elimination with me. The radiation has taken such a toll, that it seems that every problem I have is "very unique".
So finally the last week has been filled with blessed good news!! I am starting to get some answers. Not necessarily answers that I want to hear, but answers none the less. At least with answers, I can work at finding a way to live with the problems.
So here is some of the good news, the answers and the things I can do to work with what I have been dealt.
#1 - After a very odd sleep study, I felt like I should be in a sci-fi flick with all the electrodes and wired they had connected to me, they determined that I do not have sleep apnea!! Yes!! Finally a doctor's visit where they do not give me another diagnoses! Anyhow, if I had sleep apnea, I would have had to wear that horrible mask they give to people. I have enough trouble sleeping as it is. It also would have put a strike against me as far as being eligible for a heart transplant. So again.. YES!! Good news!!
#2 - Sleep study determination, I do need the oxygen that I have been wearing at night. This is most likely due to the lung and heart problems that I have. Right now I am on 2Liters and I will be doing an at home study next week to see if I need 3Liters. I am glad I only need this at night.
#3 - I am a candidate for a heart transplant. No, I am not on the list. However, for a while I was not sure if it would even be an option. Well, YES it is!!!
#4 - I do just about everything I can do to control my conditions. As the doctors and nurses at the hospital said "I am the best eyes and ears they have ever had on this floor". I am a very knowledgeable, compliant patient. I take my medications. I know what they are for. I do my research. I listen. I ask questions. I participate in my care. I (and my family) cook the majority of my food from scratch with only naturally occurring sodium. We even grow most of our own food. The one thing I can do to help myself get better and be eligible for a heart transplant is to lose some weight. I must lose 27 pounds to be considered for the transplant list. I would like to lose more, but I am going to set my sites on the first 27. So
GOOD NEWS!!! I lost 7 of those 27 pounds!!! So now only 20 more to go!!!! YAY!!! GOOD NEWS
#5 - Chyloptysis. A very, very rare condition. Actually only about 12 cases in the literature. It is a condition often caused by radiation or lymphoma's (the kind of cancer I did have was a lymphoma). It is where there is an abnormal communication between the lymph system and the lungs. This can be caused by a big hole, a fissure or a thin area where lymph fluid is allowed to go into the lungs. So fat or chyle is pushed from my lymph system into my lungs, causing what often appears to be a fluid build-up, but is actually a backflow of chyle (fat) from the lymph fluid. This can be exacerbated by my heart failure and the fact that both the pressures in my lungs and heart are much too high. So the chyle then is in my lungs, which makes it very, very hard to breath. It solidifies in the bronchial tubes and comes out as sputum in the shape of worms or trees. It is actually pretty cool to see these things I cough up as they are exact replicas of my bronchial airways.
So the fact that I have this, well, it sucks. I thought as a teenager that I wanted to be "unique", well to hell with "unique". I want to be healthy. But since I am stuck with this body that God gave me I am trying to make the best of it. So I have chyloptysis. Adelaide is really into dinosaurs right now. I think it sounds like some prehistoric animal.
I have some more tests to do to work this issue out. Bloodwork tomorrow and lymphangiogram sometime in the future. It is not scheduled because it is such a rare test that they have to figure out how they are going to do it on me, again, tired of being unique.
Good news with this diagnoses is they do have some different treatments that we (my doctors and I) are "playing" around with. First is a nebulizer treatment that I do for about 1/2 hour morning and night. Good news again!! The nebulizer treatment is seeming to work.
I CAN BREATHE!!!!! I CAN BREATHE!!!! I CAN BREATHE!!!!
It is not just the nebulizer treatment though. I also have to stay a little dryer than my cardiologist would like, which puts stress on my kidneys. I have already had kidney failure 3 times in my life, so I really have to watch this. I also have to eat a low fat diet and possibly go on a no fat diet with a liquid fat supplement. The type of fat they would supplement with does not get broken down through the lymph system. I honestly do not know if I can be a compliant patient as far as a no-fat diet....but I will work on eating even lower fat then I already do.
The good news is still that whatever I have to do, for today, for this moment, I CAN BREATHE!!
It has been about 4 or 5 days since this miraculous event. I have been able to go to the farmers market, trick or treating with Adelaide, Matt and my Parents. I have been able to walk around the yard. I even got Adelaide in the car by myself and we went on an adventure.
LIFE IS LOOKING UP!!
I CAN BREATHE!!! I CAN BREATHE!!!! I CAN BREATHE!!!
Thank you blessed God and amazing Universe for once again bestowing the gift of unencumbered breathing upon me.
Thank you also to my wonderful family, friends and amazing team of doctor's who have helped me get to this point.
Please keep the prayers coming!!
When I was pregnant with Adelaide I had a hard time breathing. We did not know at the time that I was suffering from Congestive Heart Failure. Matt and I just assumed that was how I was supposed to feel. Then after the birth I had episodes. "Too much fluid on board" is what I thought, take some more diuretics is what my doctor told me. It usually went away. I dealt with it the best that I could, but it usually did not last for more than a day or two.
Well fast forward three years and backtrack about 4 months from now. For almost 4 months I have been sleeping sitting up, not able to walk, not able to go to the grocery store. I am not much for Walmart, but was grateful to be shopping there one evening as they had electric carts that I could ride in. People stare. I do not look like I should need an electric cart.
I have spent the last 4 months in and out of the hospital, emergency room and doctor's offices. Kidney failure, heart failure, multiple rounds of antibiotics, blood work until my veins were collapsing, right & left heart catheterizations followed by 22 hours of not being able to move a muscle (that was close to being in hell), a right heart cath through my neck veins that did not stop bleeding for 4 days, by the time they got it to stop, my skin around 1/2 my neck was peeled off and raw from the bandages, a bronchoscopy, many ct scans, and during that whole time I could not breathe. What is it?? The doctor's as they say are "practicing" medicine. Now I really can not complain, as I do have an excellent team of doctor's that are working with me. My life is in their hands and I do trust the team I have. However it is a process of elimination with me. The radiation has taken such a toll, that it seems that every problem I have is "very unique".
So finally the last week has been filled with blessed good news!! I am starting to get some answers. Not necessarily answers that I want to hear, but answers none the less. At least with answers, I can work at finding a way to live with the problems.
So here is some of the good news, the answers and the things I can do to work with what I have been dealt.
#1 - After a very odd sleep study, I felt like I should be in a sci-fi flick with all the electrodes and wired they had connected to me, they determined that I do not have sleep apnea!! Yes!! Finally a doctor's visit where they do not give me another diagnoses! Anyhow, if I had sleep apnea, I would have had to wear that horrible mask they give to people. I have enough trouble sleeping as it is. It also would have put a strike against me as far as being eligible for a heart transplant. So again.. YES!! Good news!!
#2 - Sleep study determination, I do need the oxygen that I have been wearing at night. This is most likely due to the lung and heart problems that I have. Right now I am on 2Liters and I will be doing an at home study next week to see if I need 3Liters. I am glad I only need this at night.
#3 - I am a candidate for a heart transplant. No, I am not on the list. However, for a while I was not sure if it would even be an option. Well, YES it is!!!
#4 - I do just about everything I can do to control my conditions. As the doctors and nurses at the hospital said "I am the best eyes and ears they have ever had on this floor". I am a very knowledgeable, compliant patient. I take my medications. I know what they are for. I do my research. I listen. I ask questions. I participate in my care. I (and my family) cook the majority of my food from scratch with only naturally occurring sodium. We even grow most of our own food. The one thing I can do to help myself get better and be eligible for a heart transplant is to lose some weight. I must lose 27 pounds to be considered for the transplant list. I would like to lose more, but I am going to set my sites on the first 27. So
GOOD NEWS!!! I lost 7 of those 27 pounds!!! So now only 20 more to go!!!! YAY!!! GOOD NEWS
#5 - Chyloptysis. A very, very rare condition. Actually only about 12 cases in the literature. It is a condition often caused by radiation or lymphoma's (the kind of cancer I did have was a lymphoma). It is where there is an abnormal communication between the lymph system and the lungs. This can be caused by a big hole, a fissure or a thin area where lymph fluid is allowed to go into the lungs. So fat or chyle is pushed from my lymph system into my lungs, causing what often appears to be a fluid build-up, but is actually a backflow of chyle (fat) from the lymph fluid. This can be exacerbated by my heart failure and the fact that both the pressures in my lungs and heart are much too high. So the chyle then is in my lungs, which makes it very, very hard to breath. It solidifies in the bronchial tubes and comes out as sputum in the shape of worms or trees. It is actually pretty cool to see these things I cough up as they are exact replicas of my bronchial airways.
So the fact that I have this, well, it sucks. I thought as a teenager that I wanted to be "unique", well to hell with "unique". I want to be healthy. But since I am stuck with this body that God gave me I am trying to make the best of it. So I have chyloptysis. Adelaide is really into dinosaurs right now. I think it sounds like some prehistoric animal.
I have some more tests to do to work this issue out. Bloodwork tomorrow and lymphangiogram sometime in the future. It is not scheduled because it is such a rare test that they have to figure out how they are going to do it on me, again, tired of being unique.
Good news with this diagnoses is they do have some different treatments that we (my doctors and I) are "playing" around with. First is a nebulizer treatment that I do for about 1/2 hour morning and night. Good news again!! The nebulizer treatment is seeming to work.
I CAN BREATHE!!!!! I CAN BREATHE!!!! I CAN BREATHE!!!!
It is not just the nebulizer treatment though. I also have to stay a little dryer than my cardiologist would like, which puts stress on my kidneys. I have already had kidney failure 3 times in my life, so I really have to watch this. I also have to eat a low fat diet and possibly go on a no fat diet with a liquid fat supplement. The type of fat they would supplement with does not get broken down through the lymph system. I honestly do not know if I can be a compliant patient as far as a no-fat diet....but I will work on eating even lower fat then I already do.
The good news is still that whatever I have to do, for today, for this moment, I CAN BREATHE!!
It has been about 4 or 5 days since this miraculous event. I have been able to go to the farmers market, trick or treating with Adelaide, Matt and my Parents. I have been able to walk around the yard. I even got Adelaide in the car by myself and we went on an adventure.
LIFE IS LOOKING UP!!
I CAN BREATHE!!! I CAN BREATHE!!!! I CAN BREATHE!!!
Thank you blessed God and amazing Universe for once again bestowing the gift of unencumbered breathing upon me.
Thank you also to my wonderful family, friends and amazing team of doctor's who have helped me get to this point.
Please keep the prayers coming!!
Monday, October 25, 2010
The Great Leap of Faith
I am feeling especially sorry for myself today. I can not remember the last time that my health or Matt's was not on the forefront of my mind. If it is not our health that I am concerned about it is our financial situation. I refuse to call it poor, as I do believe I am one of the richest people in the world. I truly am blessed with many things. Not with material things, but with love.
I can not remember the last time I had an entire relaxing day or even a relaxing afternoon. I guess, probably in July. For a while we made a boat trip on the St. Croix river a weekly priority. Then I got to weak to do it. So now it is mid-October and I have just spent the last 3 hours crying. Sometimes I just need to allow the sorrow to flow from my body. To admit that sometimes I am scared, weak, terrified, overwhelmed. I also need to remind myself that is okay to have these feelings.
This is not how I pictured my life going. I guess if I could find a way to give up expectation then I would not be disappointed. How do I do that without giving up dreaming, goals, plans for the future? How am I supposed to truly, let go and let God? How do I live in the moment and still be a responsible parent? If I am not planning for the future how will we get by? It seems like such a great leap of faith, to actually live just for today, for this moment, in the beauty or hardness of this second.
The picture I have posted with this is by Jane Evershed. While I was conquering cancer, 15 years ago, I did a lot of volunteer work with an organization called the Women's Cancer Resource Center (WCRC). WCRC was a GREAT support to me. They had a yearly event with entertainment, food, silent auction, dancing, a live auction, friendship and joy. It was so much fun. An amazing way to celebrate life. I was very active in the planning of the silent auction. Every year, Jane Evershed donated one or more signed and framed prints. I fell in love with her work. My Mother made sure I got those prints. The first one was "The Great Leap of Faith", pictured above. There is a poem that goes with it.
The Great Leap of Faith
Its yours-
take it!
Leap like a lunatic over the chasm below
Erupting as you go
Your true self awaits you
Now you will know
Saturday, October 23, 2010
Grateful
We have a tradition in our house. When we sit down and eat together we do "Grateful". We go around the table and each of us says at least one thing that we are grateful for. For the longest time, Adelaide was grateful for "our wonderful geese". Then it was for "this wonderful lunch", it did not matter if we were eating breakfast,lunch or dinner. Now she actually comes up with different things most of the time.
I love that we have started this tradition in our household. It makes us feel better on good days and has a way of really pulling us up if we are having a down day.
Here are just a fraction of things I am grateful for today.
I love that we have started this tradition in our household. It makes us feel better on good days and has a way of really pulling us up if we are having a down day.
Here are just a fraction of things I am grateful for today.
- I am grateful for my beautiful daughter, her kindness, her health and her love.
- I am grateful for my husband, who stands by me through thick and thin and loves me unconditionally, a very rare thing in this world.
- I am grateful for health insurance.
- I am grateful for a great team of doctors at the University who are trying to decipher what is going on with me.
- I am grateful for a Mother and Father who love me and pick up the slack when I can not keep up.
- I am grateful for thrift stores.
- I am grateful for our dogs and our cats who give us so much love.
- I am grateful for my extended family and my friends who help to support me and give me encouragement.
- I am grateful for our two dogs who have had nice litters of puppies.
- I am grateful for the grants we are getting to help fix up our home and make it more handicap accessible.
- I am grateful for our farm animals, the eggs they give us and that they give their lives so that we can eat.
- I am grateful for the flowers Matt and Adelaide picked for me.
- I am grateful that I can walk.
- I am grateful for my fingers and my tongue and my hair.
- I am grateful for the parts of my body that operate without assistance.
- I am grateful for my heart, despite all its troubles and radiation damage, it still keeps beating every day, allowing me to wake up and enjoy all the things I am grateful for.
- I am grateful that we have vehicles that run.
- I am grateful for the big shade tree in our front yard.
- I am grateful Adelaide has a swing set to play on.
- I am grateful for life.
- I am grateful that I woke up today.
- I am grateful that I got to sleep for 16 hours.
- I am grateful I can hear.
- I am grateful for Frannie.
- I am grateful that my daughter has gotten the chance to meet some of her great grandparents.
- I am grateful for God and the workings of the Universe.
- I am grateful for heating assistance.
- I am grateful for all of the social services that are available that have kept my family fed, warm and in our home.
- I am grateful that I have had a good education.
- I am grateful for the roof over my head.
- I am grateful for warm tea.
- I am grateful for the prolific garden we were blessed with this year.
- I am grateful for community acupuncture and our amazing acupuncturist & friend, Mary Borer.
- I am grateful for my grade school music teacher, Larry Dittberner, who taught me to sing, dance and play a little every day.
- I am grateful for clean water.
- I am grateful that we live in such an incredibly beautiful place in this world.
- I am grateful that I have gotten the opportunity to travel to every state in our nation and 7 foreign countries.
- I am grateful for LIFE, I may have already said this, but wow, I really am grateful for it.
- I am grateful for love.
- I am grateful for fresh tomatoes.
- I am grateful for the 13 kisses Adelaide just gave me, the big hug and the big smile.
- Now it is time to go give my husband 13 kisses, a big hug and a big smile.
- I am grateful they are here.
Friday, October 22, 2010
Home, Family, an AMAZING Mother and Chyloptosis
It is nice to be home or at least at my Mom and Dad's house, which really is my families second home. I was discharged from the hospital this afternoon. Slept the whole way home in the car. My Mom and I stopped at the thrift store before heading home, something cheery and a change of scenery. Friday is free bread day. I got a cute sweatshirt for $2, a grocery bag full of books for Adelaide for $2 and a mug for a quarter. Also two loaves of multi grain bread, a pack of nummy donuts and a pack of cherry fritters for free. Gotta love the thrift store!
I got to take a nice hot bath when we got back. I was just about finished and Matt and Adelaide arrived. Adelaide climbed into the tub with me and we had some nice family time. Then went outside, played on the swing set, played hide and seek for the first time with Adelaide and did a little walking around the yard.
So nice to be with my family. I have grown weary of the hospital. Three inpatient stays in the past couple months is plenty. Not to mention ER visits, doctor's appointments and lab draws.
They have still not figured out exactly what is going on with me. As far as my heart we have kind of figured out that I operate in a 2 pound window. Two pounds under/dry weight and my kidneys fail. Two pounds over and I go into heart failure. Let me just say that this a very hard tightrope to walk.
They think that something is going on with my lungs that is not caused by my heart. They have numerous blood tests running in the lab. They also have some sputum samples that they are attempting to run. The problem is that what they are testing for, Chyloptosis, is so rare, that nobody really tests for it, not even the Mayo. So they are having to try and figure out the testing parameters. Chyloptosis, if I have it, would also be something caused by the radiation. It is when there is a miscommunication somewhere, a fissure of sorts, between the lymph system and the lungs. The lymph system carries triglycerides and they somehow get in to the lungs. The lungs get inflamed and produce these airway castings, that look like worms. Every so often I cough one out. But the main problem is that I can not stop coughing and have severe shortness of breath. I really hope that they can figure out what it is so that we can move forward and treat it appropriately.
I am trying to focus on the positive. I am home. Now it is just waiting for this round of tests to come through. Praying hard that they find some answers with out having to endure another hospital stay.
I do have to say how incredibly lucky I am. My wonderful, fabulous, amazingly dedicated Mother spends every moment with me in the hospital. She is my friend, my Mom, my punching bag, my shoulder to cry on, my rock. We always laugh and manage to have a good time. Thanks Mom! I Love you so much.
I got to take a nice hot bath when we got back. I was just about finished and Matt and Adelaide arrived. Adelaide climbed into the tub with me and we had some nice family time. Then went outside, played on the swing set, played hide and seek for the first time with Adelaide and did a little walking around the yard.
So nice to be with my family. I have grown weary of the hospital. Three inpatient stays in the past couple months is plenty. Not to mention ER visits, doctor's appointments and lab draws.
They have still not figured out exactly what is going on with me. As far as my heart we have kind of figured out that I operate in a 2 pound window. Two pounds under/dry weight and my kidneys fail. Two pounds over and I go into heart failure. Let me just say that this a very hard tightrope to walk.
They think that something is going on with my lungs that is not caused by my heart. They have numerous blood tests running in the lab. They also have some sputum samples that they are attempting to run. The problem is that what they are testing for, Chyloptosis, is so rare, that nobody really tests for it, not even the Mayo. So they are having to try and figure out the testing parameters. Chyloptosis, if I have it, would also be something caused by the radiation. It is when there is a miscommunication somewhere, a fissure of sorts, between the lymph system and the lungs. The lymph system carries triglycerides and they somehow get in to the lungs. The lungs get inflamed and produce these airway castings, that look like worms. Every so often I cough one out. But the main problem is that I can not stop coughing and have severe shortness of breath. I really hope that they can figure out what it is so that we can move forward and treat it appropriately.
I am trying to focus on the positive. I am home. Now it is just waiting for this round of tests to come through. Praying hard that they find some answers with out having to endure another hospital stay.
I do have to say how incredibly lucky I am. My wonderful, fabulous, amazingly dedicated Mother spends every moment with me in the hospital. She is my friend, my Mom, my punching bag, my shoulder to cry on, my rock. We always laugh and manage to have a good time. Thanks Mom! I Love you so much.
Tuesday, October 19, 2010
Room 617 bed 1
My new residence, for as long as I need to be here is Unit 6Charlie, Room 617, Bed 1. I have been in this room before. I could tell immediately upon getting into the bed, by the paint scratches on the wall. There are 4 or 5 of them right by the outlet.
It was exactly one week from discharge, after a 9 day stay, that I have now returned to the University hospital again. Same problem. Hopefully a different answer. My weight has gone down by 8 pounds since I returned home. Another 5 or so to go and all of the water weight should be off.
Some of the biggest news I am not sure how to place. Where it should go in my soul, my heart, my brain? I am a candidate for a heart transplant. Hip Hip Hooray. Yay, it is a possibility! Opposite side of the coin..damn it, why do I feel the need to be happy that I could actually get a heart transplant?? How do I celebrate this? Mourn this? Place it where it needs to go? I ask the Universe, our dear Mother Earth, God in helping me to deal with this. There was a long period of time that I believed that I was unable to have a heart transplant because it would not "take" due to all of the scarring from the radiation. This left me with the option of, well, nothing. If my heart gives up, that would be it. Now I have another choice. I can try and start over, switching as the docs say "from one disease to the next" but none the less, still with the gift of continued life.
It looks as though it could be pressing to the forefront faster than I thought. I used to think that a heart transplant, if I could even get one, would be YEARS away. Now, they are starting to tell me the order of things. What tests I would need. What kind of docs I would need to see first. How it works. What my BMI would need to be in order to be a "good" candidate. Realities. Possibilities. "Heart Transplant" have become daily words in my vocabulary.
It is time now to wheel my IV pole with a heparin drip back to my room and settle in for the night. I think I will take another little walk around the circle before I go back. That will round out my self prescribed six walks for the day.
To all I send blessings of health and the wish for a peaceful soul.
It was exactly one week from discharge, after a 9 day stay, that I have now returned to the University hospital again. Same problem. Hopefully a different answer. My weight has gone down by 8 pounds since I returned home. Another 5 or so to go and all of the water weight should be off.
According to the last theory, the lung issues should be disappearing. Water in my lungs caused by too much fluid on board. Well, that does not seem to be the case. The pulmonolgy team came in this evening to tell me that "they had an idea", one of the docs, a pulmonolgist for ten years, has never seen a case of this "idea". I guess that does put me into the same place that I often am, the bizarre, weird, off the wall medical case. I am not sure how I feel and am trying to stay in the present moment. "Don't get worked up, don't get worked up, it will be okay, whatever it is, it is better to know then to not know, then we can hopefully find a solution. It's okay, really it is."
I have learned a lot of new things over the past three months regarding my health. Only a fraction can be touched at a time or the reality will tear my soul apart. My tricuspit valve is leaking, most likely due to the leads from my pacemaker that go through the valve. If they get a little out of place then the valve does not close properly and causes more backflow & pressure in my heart and lungs, leading to increased heart failure. I already have high pressure in my heart.
I have restrictive cardiomyopathy. Which means that my heart is not able to stretch as it should. This is caused by the scaring from the radiation. My heart as I already knew is slightly enlarged and does have some areas that do not work well do to the heart attack.
I also have restrictive lung disease. 40% of my lung function is gone. But the good news is that the 60% that works seems to be fully functioning, or maybe not. This is really the beginning of my journey with the pulmonologists.
Some of the biggest news I am not sure how to place. Where it should go in my soul, my heart, my brain? I am a candidate for a heart transplant. Hip Hip Hooray. Yay, it is a possibility! Opposite side of the coin..damn it, why do I feel the need to be happy that I could actually get a heart transplant?? How do I celebrate this? Mourn this? Place it where it needs to go? I ask the Universe, our dear Mother Earth, God in helping me to deal with this. There was a long period of time that I believed that I was unable to have a heart transplant because it would not "take" due to all of the scarring from the radiation. This left me with the option of, well, nothing. If my heart gives up, that would be it. Now I have another choice. I can try and start over, switching as the docs say "from one disease to the next" but none the less, still with the gift of continued life.
It looks as though it could be pressing to the forefront faster than I thought. I used to think that a heart transplant, if I could even get one, would be YEARS away. Now, they are starting to tell me the order of things. What tests I would need. What kind of docs I would need to see first. How it works. What my BMI would need to be in order to be a "good" candidate. Realities. Possibilities. "Heart Transplant" have become daily words in my vocabulary.
It is time now to wheel my IV pole with a heparin drip back to my room and settle in for the night. I think I will take another little walk around the circle before I go back. That will round out my self prescribed six walks for the day.
To all I send blessings of health and the wish for a peaceful soul.
Saturday, October 16, 2010
Blessings of New Life
Our sweet dog, Sundance, gave birth today to 3 beautiful puppies. Two boys and one girl. I had her kennel right next to my head, in bed with me. She was so quiet, she birthed two all by herself and never woke me up. When I arose, I found the puppies and panicked, being that Sundance is a first time Mother. The power of nature is AMAZING!! Sun had cleaned off both puppies, chewed the umbilical cord off of one, which had already found its way to the nipple all on its own. It was having its first meal. The second was still attached to the placenta, but the bag was cleaned off. I find it absolutely spectacular how both Mother and baby new exactly what to do. No help, no hospital. Just the awesome power of nature and intuition at work.
I called for Matt and he came to help. He helped her deliver the third puppy, cleaned her up and got her situated. I also find my husband amazing. In his hunting clothes he turned from outdoors-man extraordinaire to puppy delivery coach extraordinaire. My own Grizzly Adams, wow how I had a crush on him as a child!
Adelaide, who LOVES to talk. Sat patiently in almost virtual quiet and watched. Asking questions about the whole process, which at only three years of age, she has witnessed many times already.
Welcome to the world beautiful puppies!
I called for Matt and he came to help. He helped her deliver the third puppy, cleaned her up and got her situated. I also find my husband amazing. In his hunting clothes he turned from outdoors-man extraordinaire to puppy delivery coach extraordinaire. My own Grizzly Adams, wow how I had a crush on him as a child!
Adelaide, who LOVES to talk. Sat patiently in almost virtual quiet and watched. Asking questions about the whole process, which at only three years of age, she has witnessed many times already.
Welcome to the world beautiful puppies!
Starting Today
I have been thinking a long time about writing down my thoughts, in a journal, a blog, on a napkin. Somewhere where I can try to get things worked out, share my strengths, my fears, my desires, my struggles. So here I go. I have decided to start this blog. Titled "Blood of my Heart".
I have recently been very drawn to the writings of Louise Erdrich, a wonderful author, who lives here in Minnesota. I have read three of her books in the past couple weeks, "Love Medicine", "Tracks", and most recently "Four Souls". In the last book that I read, there is a part where the child is referred to as the "blood of my heart", the Mother's heart, that is. I found this incredibly moving and a fitting name for my blog. For those of you who read in the days ahead, maybe you will understand why.
I welcome you all into a small glimpse of my life. You may find it interesting, you may not. Either way I pray that it helps me work out what I need to in my life and can help lead me toward my authentic self.
To all I send blessings of health and the wish for a peaceful soul.
I have recently been very drawn to the writings of Louise Erdrich, a wonderful author, who lives here in Minnesota. I have read three of her books in the past couple weeks, "Love Medicine", "Tracks", and most recently "Four Souls". In the last book that I read, there is a part where the child is referred to as the "blood of my heart", the Mother's heart, that is. I found this incredibly moving and a fitting name for my blog. For those of you who read in the days ahead, maybe you will understand why.
I welcome you all into a small glimpse of my life. You may find it interesting, you may not. Either way I pray that it helps me work out what I need to in my life and can help lead me toward my authentic self.
To all I send blessings of health and the wish for a peaceful soul.
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