I believe in something called the universal bulletin board. It is not for the greedy, it is not for the self obsessed. It is not for accumulating needless possessions, but rather gifting you the things that will truly help you to journey on your authentic path. I believe that if you want something and it is meant to happen, that if you put it out there, on the bulletin board that is, eventually the universe will see your posting and respond. I also believe that in order to participate you must also be paying attention for others postings, helping to make their postings come true.
Some may call it luck. Some may call it positive affirmations. Some may call it praying. I guess people could call it a lot of things or just look at is as some form of weird voodoo. Some may say that God will provide. I call it the universal bulletin board, from here on referred to as the UBB.
Lately it seems as though I have been blessed. My post-its are being read and fulfilled daily. I needed to find some new socks to donate to the church sock drive for the homeless. Problem is Adelaide does not even get new socks and usually Matt and I do not either. So the thought of going to a store and paying full price for something, well it turned my stomach a little. Thrift stores, if we can't find it there, we probably don't need it. Anyhow, I really wanted to bring in at least one pair of new socks as it is a Social Action project that Adelaide is working on at Sunday school. So low and behold, brand new pair of socks, only 25 cents, thank you thrift store, thank you UBB!
I have been longing for community and for friends to walk through the journey of life. Again UBB came through. New faces and beautiful people are popping up everywhere with open hearts, minds and hands.
So material things. Really not much I want. Most of it can go. I no longer want to dust, organize or be held down by stuff. However I have had the idea of a laptop in my head for quite a while. While I was in the hospital last time, my roommates daughter suggested I get a laptop or fancy cell phone so I could skype with Adelaide while in the hospital. I have also wanted to work on my writing, but have found it is easier to type than to write as I like to change my wording around a lot. With the computer in the basement it makes it hard to sit down at it, at will. Well, my family, bless their generous hearts all went in together and got me a brand new beautiful, fancy, not sure how to use it yet, laptop. It is absolutely amazing. The thing is, I never spoke of my desire for one to any of them, again the UBB at work and my family too. Somehow, they new in their hearts, that this "thing", this material possession could help me on my journey.
So do some posting. I like to post for others as well. I post for comfort, good food, "things". Matt needed some clay for taxidermy the other day. Within 3 weeks I found it at the thrift store. Maybe those who can buy anything they need at any time might not appreciate the UBB as much as I. But it is not just for "stuff". I constantly put it out there for support, friendship, peace of mind. Thank you UBB for working with me!
Monday, March 14, 2011
Friday, March 4, 2011
Sometimes things just don't go the way I dreamed
It has been a long time since I have written anything here. My apologies to those who check in and have worried when I have not written. It is not for lack of trying. I have tried quite a few times, but the words just do not seem to come.
It took a long time to feel stable again for me. Still don't think I am there yet. Sometimes I don't feel like writing because I just feel as though I am being a huge downer. Sometimes it is because life is going so well that I don't want to stop to write and miss a thing. I guess I am finally writing now because I am in the hospital and I am lonely. This is the second time in a month that I have been admitted. Tomorrow will make a full week for this stay and the thought is that it will be another "few" days. "FEW", not quite sure what that means. I think it is the word the doctors use when they have no clue either. I have been walking a tight rope for awhile. It is a very fine line between going into heart failure or staying out of heart failure and moving towards kidney failure. It is a path, I am told that can not be traveled for long. Something will have to give or change here.
I am developing diuretic resistance and seem to quit responding to oral diuretics after about a 3 pound water weight gain. We tried outpatient infusion this time, but it did not keep up and now I am in here.
My regular cardiologist is the hospital cardiologist this weekend. It will be nice to talk to her regarding my situation. She did stop in a few times last week. She is an amazing doctor. There is something very comforting about here demeanor. She is also amazing at explaining things to me and never talks down to me.
When she was in last week there was talk of ultra filtration, which is like dialysis but for water and salt only. Also talk of heart transplant. Sounds like the ultra filtration is a sort of bridge, something to use while waiting for the transplant. She said we will most likely start the transplant process at my next clinic visit with her.
So I feel as though I am running out of strength, courage, stamina. I also feel very numb. By allowing the numbness to grab a hold a little I think it is helping me from going into a major depression. This is where I usually get with my writing and then I do not post and usually delete. I feel like I am supposed to be continually brave, fearless, "can do"...I feel that when I admit that I am terrified and completely overwhelmed that I am somehow admitting to failure. So I am going to post this. I am then going to get up, take a walk with my IV tree around the cardiac floor circle, stretch out my lungs and go and see if my dinner has come. No matter how defeated I feel I know I need to keep going. This is my life. Nobody is going to battle this for me. Nobody is going to scrape me off the ground and nobody is going to stretch my lungs for me. I will keep going because I know that all days are not this tough. I will keep going because I know that I love to live.
It took a long time to feel stable again for me. Still don't think I am there yet. Sometimes I don't feel like writing because I just feel as though I am being a huge downer. Sometimes it is because life is going so well that I don't want to stop to write and miss a thing. I guess I am finally writing now because I am in the hospital and I am lonely. This is the second time in a month that I have been admitted. Tomorrow will make a full week for this stay and the thought is that it will be another "few" days. "FEW", not quite sure what that means. I think it is the word the doctors use when they have no clue either. I have been walking a tight rope for awhile. It is a very fine line between going into heart failure or staying out of heart failure and moving towards kidney failure. It is a path, I am told that can not be traveled for long. Something will have to give or change here.
I am developing diuretic resistance and seem to quit responding to oral diuretics after about a 3 pound water weight gain. We tried outpatient infusion this time, but it did not keep up and now I am in here.
My regular cardiologist is the hospital cardiologist this weekend. It will be nice to talk to her regarding my situation. She did stop in a few times last week. She is an amazing doctor. There is something very comforting about here demeanor. She is also amazing at explaining things to me and never talks down to me.
When she was in last week there was talk of ultra filtration, which is like dialysis but for water and salt only. Also talk of heart transplant. Sounds like the ultra filtration is a sort of bridge, something to use while waiting for the transplant. She said we will most likely start the transplant process at my next clinic visit with her.
So I feel as though I am running out of strength, courage, stamina. I also feel very numb. By allowing the numbness to grab a hold a little I think it is helping me from going into a major depression. This is where I usually get with my writing and then I do not post and usually delete. I feel like I am supposed to be continually brave, fearless, "can do"...I feel that when I admit that I am terrified and completely overwhelmed that I am somehow admitting to failure. So I am going to post this. I am then going to get up, take a walk with my IV tree around the cardiac floor circle, stretch out my lungs and go and see if my dinner has come. No matter how defeated I feel I know I need to keep going. This is my life. Nobody is going to battle this for me. Nobody is going to scrape me off the ground and nobody is going to stretch my lungs for me. I will keep going because I know that all days are not this tough. I will keep going because I know that I love to live.
Thursday, December 9, 2010
My Beautiful Friend Addie
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
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
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
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