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.

• 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.

So that is it for now. I am still staying at my parent's house. The dogs are all going crazy, that must mean that Matt is at the door. WooHoo. I am off to enjoy my moments, I hope you find yourself enjoying yours too.

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.

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!!