Walking into a new and brighter life.

Walking into a new and brighter life.

The healthy me

The healthy me

Finding your way around

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This I know.................

This I know.................

Sunday, June 27, 2010


Once in a while I will ask Bill to read this blog. He always says he will, but doesn't and probably won't. I want him to understand that I am still a person who for as long as I can wants to have independence. He has been bothered lately by my breathing issues. He talked with his doctor (not sure what kind of Dr??) at the V.A. clinic about my Thyroid. I am not sure what this doctor told him, but by the way he talks after this surgery all my breathing problems will be over and I won't need my cannula's anymore, my energy will come back, and I will be able to sleep at night.
I haven't talked to my doctor since the ultra-sound so ... first of all I am not sure what if anything they have planned to do about it? I am not sure why I am so irritated by him and his positiveness??? But I am. Maybe it's because he is jumping the gun, maybe it's because he is wishful thinking (which he has never verbalized before), or maybe it's because throughout all of this I refuse to let myself day dream about being better. That way I am not disappointed. It sounds terrible to always expect the worse, but this way I am very seldom disappointed or surprised.

I got sidetracked... what's new?! LoL I was going to talk about independence. This afternoon around 4:00 Bill went in and laid down in the bedroom to watch "his" shows and be in front of the air conditioner. I played online for a while, then went in to do the dishes and make coffee for in the morning and realized we were out of coffee. So, I looked around and made a small grocery list, got my handbag with my oxygen in it (it never leaves anymore) and picked up the keys and left. Thinking I would be about 1/2 hour tops. I strolled through the store and got up to the check out and couldn't find my wallet! I was embarrassed, and told the young man I was sorry but I thought I left my wallet at home and I would be right back if he could please sit my stuff to the side. No problem! Out to my SUV I went. I got in, out of breath, sat there for a minute to catch my breath and saw my wallet on the floor of the car. So being irritated anyway I took of my cannula left my purse in the car, took my wallet and went back into the store. 20 minutes later after waiting in line again I paid for my 2 bags of groceries and went back to the car just in time for my cell phone to quit ringing. Out of breath again and irritated now because Bill is calling checking up on me I put my cannula back on, turn on the air conditioner, gather my breath and start driving home. About 3 blocks from the house Brittney calls me ... We are not supposed to talk on cell phones and I hate too! So... I pick up the phone and answer it! LoL I kind of piss-ily tell her I know her dad called her, I am fine, just went to the store and am almost home, now I am on my cell phone I'll talk to you later!
I pull up in front of our house and my phone rings again... It's Bill! I answer, he says "WHERE ARE YOU????"!!! Now I am irritated because I am out of breath from the entire ordeal anyway, and he is making it worse by stressing me for NO reason... so I say.. "I am in front of the house" and hang up. He grumbles and tells me from now on I "Can't leave the house without either telling him where I am going, or leaving him a note telling where I am and when I'll be home"!

I am a 48 year old woman. One dam trip to the store is not going to kill me. At worse it will just be slow, and I have my phone, I am NOT STUPID ... If I need help I can call.
O.K. ... I know it's nice to have someone worry, but really? I feel like I am giving up all control, all independence. I worked and was a professional woman my entire life, I never had to account for my where-abouts to anyone. I always let Bill know if I was going to be late, or if I went somewhere he knew. But, I also could make a run to the store without permission!

The more irritated I get now the harder my breathing is. The more I have to raise my voice the more out of breath I get. If we are in a room of people and I have to talk loud... you might as well forget it... I will be whispering within a few minutes! I am not sure if this is the Thyroid thing, or the Copd? I have noticed that when Bill and I have arguments I struggle for air. Heck, even singing a Little Mermaid song with Layla makes me gasp for air!

I am most likely over-reacting about this... but I am just not ready to give up being an adult and being treated like a teenager. Bill and I will have to have a conversation and come up with something that we both are O.K. with.

Tomorrow's another day! ;)

Saturday, June 26, 2010

I caught a glimpse of my future

The other night I watched this excellent new show on ABC called Boston General. It's an actual show similar to Grey's Anatomy but real life. It follows a group of interns and doctors around Boston General.

It must have been Divine intervention.. because as it happened their first nights show had to do with Lung Transplant and Organ donation. I sat riveted and after it was over I cried like a baby. You hear the expression.. it hit close to home... well, this hit the house, knocked me out of my chair and kept me awake that night.

Those of you who are in the end stages of this disease God Bless you! There were 2 woman waiting for transplants. Somewhere in the middle of the country a young person had died and their organs were donated for transplant. The doctor flew across country. Once at the hospital where they kept the donor alive by artificial means different surgeons went in turn and removed what organs were viable and they needed.

This doctor took both lungs. He said even though the lungs looked perfect, pink and subtle there was no guarantee the transplant would be successful. And, one thing I didn't realize that since organs are in such short supply those needing a double transplant are usually overlooked because of short supply. Their thinking is... 2 lungs to save 2 people verses 2 lungs to possibly help one person. There are variables too though. How long the person has been on the list... Their health at the time organs are available (any infection or common cold can knock you out of place on the list), and age.

For the last few months I had been doing my best to ignore symptoms. They sneak up on you. At first you feel a little something here, then months later you realize.... Oh wow... that is a symptom of something wrong.

I am at the beginning of this journey. As bad as I think I have it now... there are many more who have it worse. That is not to say what I am going through isn't real or painful... it just means I have to do my best even on days when I feel like sleeping all day because I literally have to force myself to get up and do anything. It's not depression, it feels like exhaustion. Of course I haven't done anything to be so tired for. Since my pulse issues and other things I don't get up and do as much as I know I should! I absolutely know that I need to be walking. Of course until they figure out why my pulse rate is out of control I am not to do too much to make my pulse race or get out of breath. Which means... Nada!

Once a year in town the have a old car weekend. We went down with the Britt and Fernando and Layla and his mom to walk through a big park and look at cars. I would guess well over a hundred cars. Anyway... there I am packing my oxygen tank, wearing a cannula and sweating in the 90 degree sun. I ended up doing 2 laps looking at cars then excused myself and went and sat in the shade with Layla. I was out of breath, I realized that anywhere from now on that I go and have to walk a lot in the heat... I am out. It's just not for me anymore.

You know, when these things happen I get so pissed at myself. I can remember my parents at my age water skiing, snorkeling, mowing the yard... I will miss so much with Layla.

So... Like I said, I am near the beginning of this. Things WILL get much worse. I have no time range. I just know that in my family both parents and one Aunt... and all three lived only 10 years max once they got put on full time oxygen. That doesn't give me much time. This is something that once in a while I think about. I catch myself thinking of how old Layla will be? What age Bill will be? How long it would take me to pay off a new car? LoL

It's like I said... I know some days I feel bad, weak, breathless.. but I know it will get worse... so I had better (as my daughter says) "Put on my big girl panties" and learn how to get out there and do some living while feeling like this.

I know this lump in my throat/Thyroid is not helping things. Now just reading Layla a book makes me hoarse. Talking on the phone makes me hoarse. Getting into a heated debate makes me out of breath and hoarse. I also find that at night when I lay flat on my back it feels like my throat closes off, which makes it hard to get air.
I know that my weight can't be helping any of this. And I know from quitting smoking that I am making excuses to keep my food.
For the first 4 5 or 6 months I was so good at watching what I ate, and keeping portions in control and not cooking fattening things. Then I started cooking each recipe I am making for this cookbook of moms, and honestly... I just thought I have given up so much.... that I was going to hold onto good food.
Sooner or later I will have to begin my weight loss journey again. I am hoping that this summer my appetite will decrease and I will drop some weight.

I hate looking in the mirror. I hate that my skin suddenly has begun to hang from my body. My legs look like someone who had gained a bunch of weight then suddenly lost it... the skin almost overnight has begun to hang. Even on my arms recently my skin has gotten "loose". Layla and I were in their pool and she lost her balance. She grabbed my arm, but not around it.. she actually used my skin as a handle. I cracked up. It didn't hurt, but the next day my arm was purple and black.

I had Britt give me a hair cut. A big one! All my long curly long hair is gone. It's funny... usually the shorter my hair is the curlier.... not this time. It actually is straight and kind of dull looking. I wonder if the Co2 my lungs aren't expelling can damage hair? It sure has changed. Either that, or it could be one of many meds I am taking? Who knows!
It's all part of the new me I need to get used to.

That sounds so dramatic and I really am not being a drama queen. It's just that you have NO idea the frustration that I have. I see people much older than me walking with their spouses freely and painlessly. I watch adults swimming when I take Layla to swim lessons. I hear my friends talk about activities and I feel damaged, used up. This is where the anger comes in at myself for smoking and damaging myself. This is where the shame comes in that I let myself get like this. This is when the self pity starts and I have to fight so hard to just accept what I have to work with.

I hate it when things get to this point. And, they do and they will continue to. The good news is that... the time between these pity parties are getting longer, and the actual party doesn't last as long. There is my positive for the day!
I had to really reach for that one! LoL

Tuesday, June 22, 2010

I was talked off the ledge

So, I would say I slept on it. But sleeping isn't in my vocabulary these days. I thought and thought about this letter to my step father and step brother who is co-executor. I thought and I would sit down and type. Then I would stop and think some more.

I decided I was not going to write to my step-father. I have to let that go. But I did write a terribly long letter to my step-brother and co-executor of the estate.
I babbled, I jumped from one subject to the other, and I wrote.

Then as I promised him I would do... I sent the letter to my big brother to "proof read" for me. He called tonight and pretty much thumped me on my forehead. LoL
He gently told me so many of the things I put in that letter were of little to no consequence to my "step family". Things I thought were important meant little to anyone else.

I ended up agreeing with him. I have to let this go, I just do!

I did ask for my step-brother/co-executor's help to try and regain a few things that were just given away due to spite and that I have actual proof of where they were intended to go. We'll see if anything comes of it.

As for me..... I am back to having breathing issues. Today like a fool I forgot to take my medicine this morning. That is 2 inhaled meds and a anti-inflammatory. At around 3:00 I remembered... only because I was feeling terrible, but by that time it was too late to do anything about. I did use my rescue inhaler more today than I have in months! I just took all my meds and I am waiting for them to start helping before I go lay down. Laying down these days isn't the best thing for my breathing. I find that sleeping on my side helps, but kills my lower back. So, I roll around a lot. I miss those days when I could flop into bed and just sleep. These days if it isn't my back, its my breathing... or waking up with the cannula wrapped around my neck and feeling like someone is choking me to death! LoL Awe... what a life! LoL

I got a message from one of my best friends in high school. She is just a doll. It hasn't been too long that we got back in touch with each other. She was so kind and thoughtful that I just cried. Why is it ... it's easier for me to hear bad things, rather than kind words? She reminded me that I am still me. Although looking inside out.. I feel SO different. That's my issue though. Bless her heart. She gave me what I needed to once again push forward.
Some days that feels like an uphill battle. I really have to quit dwelling on all this outside stuff that I have no control over, and concentrate on enjoying life again.

Monday, June 21, 2010

Smile, no one will know why! ;)

I tell myself everyday to see the bright spot. To look (search if necessary) for the positive. It has been so hard this week. I had one awesome day this week. I played in the flowers, I baked, I went through old things that brought back wonderful memories. Then....... I found an email my mom sent me in 1999. It was her "just in case" will. It was her, "getting her house in order" list. I had forgotten I had it.

I was the executor of her will and I forgot about this email! After her death things became really ugly with my step-father and his kids (well some of his kids). My mother had made it clear over the years that my step-sisters were to receive NOTHING of hers. At times when she would say that it was almost embarrassing... she was quite vocal at times. :) I loved her for it.. and it even became a joke to my step-dad and brothers and I that mom had told us... "One of these days I am going to start speaking my mind"! We all laughed because what the heck had she been doing all these years??? LoL

So the other day when I found this list of hers I wanted to SCREAM! I wanted to find my step father and RUB IT IN HIS FACE! I asked him for my mothers craft things. We spent overnight trips going to fabric stores in every town we found. We went to classes on applique and beading and tole painting and clay and scrap booking... so many other things. And, like any woman the more "supplies" we had the better we were! LoL We had each bought several hundred dollars worth of glass beads of every color and size.
I told him mom told me I could have her craft things with no exceptions. I tried to remind him as gently as I could that mom did not want his girls to have ANYTHING of hers. I was more than happy to share with my sister in law... but not his kids.

As it turned out most of it he gave to his daughters. I asked for my moms recipes and was told that I could have ONE box. She had several boxes, and was the best cook and entertainer. So, I took my grandmothers recipe box. If nothing else I wanted that to stay in our family. He gave the rest to his daughters.
So many other things.

In this letter that I have now it spells out all of this plus much more. Since his oldest son is also co-executor of their split estate I am going to send him a copy of this list with a letter from me. The problem I have is that I am for the most part a push over, and he is an attorney. Not exactly the perfect match up. I promised my brothers I would hold my ground.

It just really takes it out of me when I get stressed or overly excited lately. After I found that email I cried and had a tizzy and was wiped out! I went to bed @ 7:00 that night and have not recovered yet. Mom died almost 2 years ago, and I am still struggling with it. Having to continue to fight for her things just makes it that much harder, and frankly I am not sure I have much more fight in me?

The good thing is.. I know his son (I am not using any names) to be very fair. My step father is 92 years old and while other people blame his behavior on his age, I don't accept that explanation or excuse. He has told stories to my mom's sisters about me, saying terrible untruth's. I cannot forgive him for that. He and my mom were together for 30+ years and I was young when they married. He was like a 2nd father to me and I feel abandoned and hurt that he turned on me.

Enough of that!

Today I went in for my ultra-sound. The technician said it was near my clavicle and appeared to be both solid and fluid filled. I am not sure what that means. I do know that I am experiencing some effects of it. I am not sure what all the symptoms involve. What I can tell is... it bothers me more and more to swallow, still not painful... just like I have a lump in my throat! (oh my god! LoL Duh!) I am finding it hard to take deep breaths. When I do get out of breath I have to step back and calm myself down before I can get air into my lungs. Not a good feeling.

The tech said after the radiologist read the test results they would send them to my doctor. Of course I probably won't hear until my appointment with her which is the 8th of July... so No Need To Worry. Repeat that over and over as necessary! LoL
I look forward to the day that I can just worry about Copd and nothing else. I think that would be enough for anyone. Lately it's just too much happening too often. I can't get balanced.

I will get this thing with Mom's estate settled one way or the other, then I will get this Thyroid problem fixed, ignored or removed... then I can get on with daily life and small hurdles. In the mean time I find myself back on the roller-coaster wanting so badly to get off!

Think happy thoughts!

Saturday, June 19, 2010

Kellie's Big Batch Chocolate Chip Cookies

2 cups shortening
1 1/2 cups white sugar
1 1/2 cups brown sugar
4 eggs
2 teaspoons vanilla

4 1/2 cups flour
2 teaspoons salt
2 teaspoons soda

12 oz. package of mini chocolate chips
1 cup walnuts (optional)

In a mixer.... add
shortening, sugars, eggs (one at a time) and vanilla, blend well.
In a seperate bowl... add dry ingredients then wisk until blended. (this takes the place of sifting) Then add to sugar mixture, mixing thoroughly. Finally add chocolate chips and nuts or candies.

Drop by teaspoonful onto ungreased baking sheet. Cook for 10-12 minutes at 350 degrees, remove to wire rack to cool.

I make these every Christmas. As a very good variation chop finely thin mint candies and add to recipe as the last ingredient. It's a nice minty change for the holidays. You can also put candy canes into the food processor and add to dough, this also gives it a touch of red for the holidays.

Friday, June 18, 2010

Broccoli Salad


4 cups broccoli florets (small peices)
1/2 lb bacon
1/2 cup apple, diced
1/4 cup red onion, diced
1/4 cup raisins
1/4 cup sunflower seeds
1 1/2 cup mayonnaise
4 tablespoons lemon juice
1/2 cup sugar (more or less to taste)

Cook the bacon until crispy. Drain on paper towels and then crumble.

Toss together the apple, onion, raisins, sunflower seeds and bacon. Add to the broccoli in a large bowl. Mix in the mayonnaise and lemon juice, add the sugar. Toss to coat.

Cool Cucumber Salad

While we were in Bend we went to this buffet restaraunt. I had this salad in their salad bar. It was so refreshing and cool. I tried to copy it and I think I did pretty well.

2 Engligh cucumbers diced evenly
1 cup sour cream
1/4 cup cream cheese to thicken
1 teaspoon lemon juice
1/2 teaspoon dill
1/2 teaspoon tarragon
Salt and Pepper to taste.

Mix thoroughly and refrigerate.

Serve over shredded lettuce.

Leah's Cole Slaw

1 bag shredded prepared green and purple cabbage/carrots.

in a bowl mix...
1/2 cup mayo
1/2 cup sour cream
1/2 cup sugar
1/4 cup vinegar
3 tablespoons of powdered coffee mate... grab some at the next restaurant your visiting... shhh I won't tell!

Mix together well and pour over cabbage. Cover and refrigerate at least an hour to combined flavors before serving.

*We joked that no wonder the kids liked this so much... look at the sugar content!

Aunt Lora's Hobo Bread

Mom used to make this every fall, for as long as I can remember. It makes a great gift wrapped in foil with ribbon around it. I would make this and give it out to my friends with cookies every year.

Put 2 cups of raisins into 2 cups boiling water with 4 teaspoons of baking soda. Cover and let sit overnight, or at least 4 hours.

2 cups sugar
2 eggs well beaten
1 teaspoon salt
1/4 cup oil

mix well .... then add
4 cups flour and stir well.

Pour into greased and floured 1 pound coffee cans (or any similar 1 pound can)
Bake for 1 1/2 hours at 350

I had to adjust the baking time... I shortened it by about 10 minutes. I am not sure if it's my altitude or oven. I also covered the tops loosely near the end with foil so they wouldn't brown any further.
Remove from oven and allow to cool on wire racks then remove from pans and wrap in foil.

A great morning

I woke up determined to have a good day.
I had great coffee and watched the news (it's a habit). I then got up and started making one of the recipes Mom used to make every Fall/Winter. It's called Hobo Bread (in coffee cans) and it is the best stuff. I want to get going with this cookbook and besides that.. I love it and have NO issues eating it in June! LoL
I'll post pictures and the recipe after I finish this blog.

Then I went outside and played around with my flowers and gardens. In the back yard most of the gardens are overgrown with grass... last year I did ZERO weeding and everything is way out of control! Beneath that overgrown grass are some beautiful flowers.

I have to include my shy baby pitbull. She thinks the camera will hurt her, so she always tries to slink away. LoL

Mom loved Iris's. Her and my step dad went to a farm where they grow rows and rows of Iris and bought some beautiful ones. This is one of my favorites.

My peony's are also in bloom right now. They are so delicate I just love them. As you can tell this is my favorite time of year, and I look forward to being able to get out and play with my flowers.

I had to have Bill do all the fertilizing this year because of the smells. There is so much outside that I can't do anymore, or at least at the moment. I went out and weeded in the front yard this morning and after about 10 minutes of doing very little I came in and hooked up to oxygen. It's frustrating. I am determined not to let it ruin my good day! I am finding it more and more apparent that the doctors are so much wiser than I am... LoL ... When they say 24 hours of oxygen they really mean it. I just don't want to pack around the tanks and hoses outside, so I'll go out and do a little then come in and hook up. Even when I am cooking I leave my oxygen off. I am worried about the stove and oxygen. So at times I get too involved and forget about why I am so uncomfortable... then it hits me and I pay the price for staying off of it so long.

O.K. it's time to go out and change the water. I'll be back soon to post a couple more recipes.

Wednesday, June 16, 2010

My thoughts are elsewhere today

I woke up this morning and my thoughts have been with Mom all day. She was born June 16th 1931 and died November 21st, 2008. I have tried to keep busy. Cleaning has always been my "go to problem solver" when I wanted to escape. Today it's not working very well. I am wandering around starting to vacuum, then on to dishes, then back to vacuuming, then dusting, then I remember that I was doing dishes.

While I was starting my dusting I put a few things away in my desk and found a email Mom sent me Wednesday, November 01, 2006 @ 6:48a.m. She was always an early riser.

It's titled.....

And Then It's Winter ...

It seems just yesterday that I was young, just married and embarking on my new life with my mate. And yet in a way, it seems like eons ago, and I wonder where all the years went? I know that I lived them all. I have glimpses of how it was back then and of all my hopes and dreams.

But, here it is... the winter of my life and it catches me by surprise.

How did I get here so fast? Where did the years go? Where did my babies go?

Where did my youth go?

I remember well seeing older people through the years and thinking that those older people were years away from me and that winter was so far off that I could not fathom it or imagine fully what it would be like. But, here it is ...

My age is beginning to show and we are now those older folks that we used to see and never thought we'd be. Each day now, I find that just getting a shower is a real target for the day! Taking a nap is not a treat anymore ... it's mandatory! Cause if I don't on my own free will, I just fall asleep where I sit!

So, now I enter into this new season of my life unprepared for all the aches and pains and the loss of strength and ability to go and do things. But, at least I know, that through the winter has come, and I'm not sure how long it will last, this I know, that when it's over--it's over!

Yes, I have regrets. There are things I wish I hadn't done and things I should have done. But indeed, there are many things I'm happy to have done. It's all in a lifetime ...

So, if you're not in your winter yet ... Let me remind you that it will be here faster than you think. So, whatever you would like to accomplish in your life, please do it quickly!

Life goes by so fast. Do what you can today, because you can never be sure whether this is your winter or not! You have no promise that you will see all the seasons of your life ...

So, live for God today, and say all the things that you want your loved ones to remember.

"Life is God's gift to you. The way you live your life is your gift to God, and to those who come after. Make it a fantastic one."


She hand writes below it...

I haven't figured out all the Seasons, but think I've hit winter, but could be late fall.

Now, I am wondering my seasons? I think it's Summer with a little snow on the falling leaves.

Monday, June 14, 2010

Alternative Therapies (LVRS and Transplantation)

(these are excerpts from the book Positive Options For Living With COPD by Teri Allen)

Lung Volume Reduction Surgery (LVRS)

Lung Volume Reduction Surgery (LVRS) is a procedure that removes diseased lung tissue so that the healthy tissue that remains can work more efficiently. Up to 30 percent of the lungs may be removed.
LVRS does not cure COPD, but it can improve quality of life by decreasing shortness of breath, increasing lung function, and improving energy and mobility. The best candidates for this surgery are those with severe emphysema in the upper lung lobes who are otherwise healthy and have made little or o progress in a formal pulmonary rehabilitation program.
As with all surgical procedures, there are risks involved, including scarring, serious infection, and death. Medicare will typically cover this procedure if you have:
*quit smoking at least 4 months prior to the procedure
*no history of coronary artery bypass graft surgery or some other heart
Talk with your health-care provider if you are interested in more information about lung volume reduction surgery.

Lung Transplantation

The transplant of one or both lungs is typically of last resort reserved for those with severe to end-stage lung disease. Although the procedure might not lengthen your life, it can make your remaining years more enjoyable by improving lung function and your ability to exercise, and decreasing your shortness of breath.

Waiting for a donor can be a lengthy process but living donors have been used. This procedure should not be considered lightly because it has serious risks, such as rejection, death and infection. Those who receive a lung transplant must take immunosuppressant drugs for the rest of their lives, thereby increasing their risk of infection.

To be considered for lung transplantation, you must:
*be less than sixty-five years of age and have end-stage lung disease.
*be ambulatory
*be at an ideal body weight
*have hypercapnia with associated pulmonary hypertension
*have an FEV1 <20 percent of normally predicted

Many insurance companies will cover lung transplantation on a case-by-case basis. Talk with your health-care provider if you meet the above criteria and would like more information.

End of life choices

(This is taken from the book Positive Options For Living With Copd, by Teri Allen)

No one likes to think about dying, but the reality is we are all going to do it whether we are ready or not. By preparing beforehand, you can make choices about your medical care before an emergency occurs that will affect your quality of life as well as the dying process itself.

Talk with your family
Make sure your family knows your wishes in the event of an emergency. Discuss which medical treatment you do or do not want. Remember that your family will be speaking for you when you cannot. Let them know your wishes regarding:

Intubation and mechanical ventilation: Do you want it? For how long?

Resuscitation: If your heart stops, do you want chest compressions and medications delivered in a attempt to restart your heart? Chest compressions can be brutal for the elderly and those with COPD because the bones of your ribs and chest may be broken in the process.

Tube Feeding: Do you want a tube placed in your stomach to feed your body in the event that you cannot eat? Do you want one temporarily or permanently?

Comfort Care: Would you rather not be aggressively resuscitated but be made comfortable in your final days or hours?

Advanced Directives
An advanced directive is a written record outlining your desires in the event of a life-threatening emergency. It should be completed and kept on file with your doctor and the hospital you use. This is especially important if you have no close family or friends. You may also appoint a power of attorney to enforce your wishes.

Physician Orders for Life-Saving Treatment (POLST)
This is a simpler form of the advance directive designed to let your desires be known to the 911 medical personnel who respond to a call from your home. The POLST form is typically posted in a visible place such as on your refrigerator and is the only way for emergency personnel to know your advance directives. Emergency personnel are required to perform resuscitation, including intubation and chest compressions, unless the form is present or your family is available to let your wishes be known. This form is for emergency personnel only and does not replace the advance directive used by the hospital.

Sunday, June 13, 2010

Mom's Resting Spot

I met my brother in Bend this weekend. We had spread my Mom's ashes almost a year ago. We had intended to go back soon and place a plaque there beside her brother and sister-in-laws plaques. Time and life got in the way and it took us until now to get back there.

Because it had been a year, and because the place we scattered her wasn't marked (only by the plaques there for her brother and his wife)and because I am sure our memory's were both bad... we figured if we went in a different direction and walked a little further, but walked downhill it would be easier for me and my oxygen tank.
LoL The joke was on all of us. We drove past where we had stopped last year. Then we started hiking down the hill. Not exactly down but more over, through and around. The ground was inches of soft dirt/sand and brush and volcanic rock. The tree where the plaques had been was on the edge of a beautiful canyon, so we walked the edge. We walked and walked... there was some bitching and moaning too. After about an hour and a half we had just about given up and talked about how maybe kids had found it and broke off the branch and removed the terra-cotta angel. I tried to talk to mom and have her show me a sign... Nope. The only sign I think I got was once when I stopped to rest and gasp for air... some ants (big red and black ones) got on my feet and legs and started biting me!
Oh, did I mention that I had on flip flops? LoL
Anyway... we found the tree. We added her plaque and a little dangling angel.

I miss her so much. I never realized what a force she was in my life until she wasn't in it anymore. She is never more than a thought away.

Going through these recipes and remembering what an amazing cook and entertainer she was is rewarding. It's sometimes bittersweet.... She would have loved that I am cooking, and would have loved to teach me. But, it seems I always had something else to do.
We shared a lot, but cooking was never one of them. Well... we did make it a tradition to get together right before Thanksgiving every year and make Rum Balls. They had to be made and stored until Christmas time so they tasted just right. I'll be posting the recipe for that soon. Also, every year we lived near each other we got together and baked Christmas cookies of all kinds.. recipes also to follow.

Anyway... This trip was good for me. I loved my time with my big brother. We had hoped our other brother could make it, but he had something come up at the last minute.
It is sometimes hard to be the only sibling who is so far away. I grew up in a big family, but at times it seems my entire family is Bill and Brittney and Layla. Not that they aren't enough... I just miss my brothers. I miss feeling like I am part of their family.

As for the trip and my Copd. Well... for the most part my breathing was good. Not so much yesterday when we climbing the mountain, and today I certainly am paying the price. But I would not have missed seeing my brother and marking mom's resting place for anything!

As far as I can tell the results of over-doing it are this............
-My hands and feet are swollen and painful. It hurts to bend my toes and fingers.
-My throat hurts like I scratched it. I am assuming it's from gasping for breath and the dry dusty air.
-I am having a difficult time swallowing. It just feels like something is in the way of food getting by. Still not painful, just really weird feeling.
-Even before the mountain thing I was having issues getting air into my lungs. I think I mentioned that the last blog. I am assuming most of this is the nodule on my Thyroid. And, because I think that is the problem for most of these issues, I am hoping if they remove it my problems will ease up a little.

I can tell you traveling with oxygen is tiring. First of all we took WAY too many small (purse size) tanks, but Bill said he would rather be safe than sorry. We hauled the big concentrator into the hotel room and I used that while in the room. Then I had the bigger tanks that I used in the car.
It's just not convenient with all this.

I could tell a few times that my cannula bothered my brother I think. Not in a bad way, other than I think he realized how serious this is.
I just keep thinking last year I climbed the hill... out of breath, but still I climbed it on my own. I even walked around town with my brother without much huffing and puffing. Now 11 months later I am on full time oxygen and am having heart issues.

I still remain positive. Really! It's just certain moments that I can't handle this and that's when the pity party starts. At this moment I am good. I have my ultra sound coming up the 21st... I may have a few bad days after that... but it's not like I am planning on it. Maybe I will schedule something fun around that time to take my mind off things. :)

Well... It's past my bedtime and both my feet having been asleep for an hour or so. I'll try and get up and wobble into the bedroom and get a good nights sleep.

Thursday, June 10, 2010

My sincere appreciation

I am not a religious person. I believe in god but I never have gone for organized religion. So when I say I have been blessed... I don't say that lightly!

Yesterday I think (days run together) I went to the Become an Ex site to hunt down HWC. I wanted to let him know I reached one year and thank him personally.

I ended up blogging there. I introduced myself and briefly explained that I just reached my one year anniversary and then told a little about life with Codp/Emphysema. It wasn't even one of my "wordier" blogs. I had a lot of responses to it, more than usual. And, most of them talked about how much strength I have and some even admired me for writing about myself.

Then I came here tonight and read Guilia's response to my last blog.

I feel blessed and humbled. As bad as I feel some days, as many days as I feel like I will drowned in self pity, It has come to my attention that I actually might make a difference with this blog, and talking honestly about my struggle.

I know you hear people say "I hope I can make a difference". Well, it somehow means more to me than I can express. It gives me new determination to stand up to this disease and fight again. I know it won't make any difference for me, but if I can reach someone else going through it... Then it's worth it.

Bill and I got into an argument about this trip. He saying we should reschedule and me crying (and getting pissed at myself for crying) and trying to explain that last year I could travel freely and we didn't. This year I have some tanks to haul around and still the year is half gone and this will be our first trip away from home... and I will NOT let him cancel it. I need to have fun while I can. I need to spend time with family now, not when I am confined to a chair.
Maybe next year I won't be able to travel at all... so we are going.

That is part of the new me that he and Brittney say they are not used to. I have always been one to "go with the flow". To back down from confrontation. Well, these days I figure I have to be a little stronger and speak a little louder if I need to get my point across. Speaking of "speaking a little louder", my voice is getting really raspy, I am sure it is the nodule. But it's kind of creepy, this voice coming out of me is not mine. LoL

I just wanted to thank you Guilia and everyone who commented such lovely things on the Ex site to my anniversary blog. It means so much to me.

Wednesday, June 9, 2010

I haven't wanted to blog much the last week or so. Actually sometimes coming here and putting down my feelings or talking about my symptoms is cathartic, lately I come here begrudgingly. Sometimes it's just facing things I am trying not to think about, and sometimes it's just feeling like I am perpetually moaning and bitching.

I have had a 9 days to think about the "nodule" thing. It makes sense to me. It would account for my inability to draw a deep breath. Also, sometimes swallowing feels funny... not painful, just odd. She tells me the Thyroid can effect a lot of different things, I can live without knowing about them. It seems with each "new" thing I have I start feeling symptoms. If I don't know about the symptoms then maybe recognizing the symptoms won't be so easy.
I liked it before when I thought swallowing was odd, and not getting a deep breath was just my Emphysema acting up. I don't want to become one of those people who are waiting for symptoms to show up and every little hic-up means something else to them. I prefer to think I am healthy with a few genetic imperfections! LoL
That is my land of Denile and I will happily hand out passports to anyone who wants to come stand beside me!

We are getting ready to go this weekend to put a plaque where we scattered my mom's ashes. We are meeting my big brother and his girlfriend. I miss him and it will be so nice to spend a few days with him.
I sometimes feel pretty lonely. Even though Bill is here and Brittney is now living back in town. I know Bill is annoyed by me, and Brittney is busy with her new relationship and getting her house set up and going to school. I am happy for Brittney, it's just that we used to talk everyday, confide in each other about EVERYthing. These days, not so much. I don't want to burden her. I don't want to make her feel responsible for me.
Hell, I don't even let Bill know I still am scared as hell with each new diagnoses. I know (and hold it against him) that he still blames me for getting sick. He mentions it in different ways every so often that I am responsible for my health issues. DUH! I wish he would or could move past that and LET IT GO! I wish he could just deal with and help me deal with my anxiety and moments of depression, and every other thing that goes along with this ugly disease. Instead he closes himself off. He talks to other people about it, I hear him on the phone. But he won't talk to me. I sometimes feel like I am alone.
So, having a new someone who I know loves me around (my brother) will be awesome for a few days.

Anyway, this will be my first trip with oxygen. So days in advance I had to order oxygen to take with me. Now that I am on 5 liters those small tanks go quickly, about 2.5 hours each. And, the bigger ones I will use in the car for the drive up and back and then I will take my home concentrator with me for the room. What a pain this is. It will also be the first time anyone else in my family will see me with my cannula. I know what that first glimpse is like. I remember seeing my Dad and my Mom for the first time wearing a cannula. It is scary thinking they are sicker than they are letting on, it's awkward because you can't help but gawk at it. It just takes getting used to. I can now walk almost everywhere in our house with it. There are still a few places the hose won't reach and I still once in a while forget.. It is those moments that snap my neck back, stretch my ears and nose and then make me laugh. I am getting used to seeing myself with it on. I am getting used to explaining to people why I have to wear it. It took some time, but I am over it now. It's still a little hard to feel "pretty" or attractive with it on. I can put on make up and still the cannula is there. Now, because I have worn it so much there are permenant lines on my cheeks from the hose wrapping around my ears.

I watch shows like Oprah and these women are on there talking about how wonderful life is in their 50's. That they have never felt more confident, pretty and satisfied. Well... I won't have those days. I look back now to find those days of mine. Days when I felt attractive, Days when I felt confident, Days when I felt I could physically do whatever I wanted or needed. All that is behind me.
And, I am NOT looking for people to say... You are still pretty. I don't need that stroke to my ego. I just know the pure living days are behind me. That what I am facing now and in my future are different. And, each plateau I reach is different from the last.

So, more now than every I have to like me. I told Britt today I am not so much worried about losing weight and being in a swim suit or fitting into skinny jeans. No one every looked healthy skinny or fat with a cannula, so I may as well have something I enjoy. Of course the last week I can actually say my appitite isn't what it was. And, with summer coming diet or not I am sure some weight will come off. But, I am not longer going to worry about it, or fret that I am in the "big girls" section of the clothing store. I still am eating healthy. Still eating a lot of veggies and colored foods. But, I also am eating butter and heavy creams in sauces.

I'll check in when we get back.

Tuesday, June 8, 2010

Mom's Homemade Salami

5 lbs lean hamburger
4 tablespoons Morton's Tender Quick Home Meat Cure Salt
2 1/2 teaspoons Liquid Smoke
1 teaspoon Garlic Salt
2 1/2 teaspoons coarsely Ground Pepper
2 1/2 teaspoons Dry Mustard

Knead all ingredients together and put in a large bowl. Cover and refrigerate. Knead 5 minutes each day for 4 days. After kneading on the 4th day, divide and roll into 5 or 6 rolls. Place rack over a baking sheet, or use a large broiler pan to catch the drippings.

Bake 9 hours at 160 degrees, turning the rolls every 2 hours. Remove from baking racks to cool. Wrap in Saran and store in refrigerator or it freezes very nice as well.

* Note.... My oven's lowest temp is 170 degrees and I still cooked for 9 hours and it was fine.
I was very pleasantly surprised... I love this.. It tastes to me like a very mild summer sausage. Bill said he would use it in place of Kielbasa.

Mom's Delicious Salad

1 Small Cottage Cheese
1 Small Cool Whip
1 Small Orange Jello
1 Cup Mandarin Oranges, Drained

Mix thoroughly Cool Whip, Cottage Cheese and Oranges. Sprinkle Orange Jello over top and mix well. Let stand for at least overnight.

You can substitute any fruits and Jello's.
This one to me tastes like a Creamcicle.

I used a large container of Cottage Cheese and therefore it didn't "unmold" well. So, I cut my pretty flowers Bill bought me and decorated around it. I told him not to be upset with me about cutting the flowers to cover up a mistake, they will be part of the cookbook and there forever! LoL

Friday, June 4, 2010

Mom's Seafood Tomato Aspic

To me this is like a spicy shrimp cocktail

2 small packages lemon jello
1 1/2 cups hot water
2 cans tomato hot sauce
1 tsp. mustard seed
1 tsp. celery seed
1 green onion, chopped fine
1 cup celery, chopped fine
1 sm. can shrimp or crab

Mix Jello, hot water, tomato sauce, mustard seed and celery seed together in a glass bowl and set aside to cool.
Add green onion, celery and shrimp or crab. Place in refrigerator for several hours to gel. Serve with crackers

I found a new place to live in denile, it's a nice place you should visit!

I told you in my last blog that I had a Doctors appointment and that I would let you know how it went. Well, a couple things............
First my appointment was supposed to be a "well woman" check up. You know going over mammogram results, pap smear.. the usual. I knew something was up as soon as my doctor walked in and said we will have to reschedule my WW appointment until next month because we had other issues to talk about.

Last year evidently (I wasn't aware of it) when I had my first contrast CT scan a nodule showed up on my Thyroid. A month or so ago I had another contrast CT scan to look at further damage to my lungs, and this time the nodule caught the attention of my Pulmonologist. He sent a note to my primary doctor and said this needs to be addressed. So... after talking to her about it I am concerned, but honestly at this point it is Just One More Thing!! So, I am kind of letting it roll off my shoulders until there are results of some kind. I am scheduled to go in on the 21st for a ultra sound and then they will schedule a biopsy or removal with a surgeon. It is located in a spot that is not easily accessible (go figure, something being difficult where my medical issues are concerned!! Lol). She went over the likely results. That a cyst is most often non cancerous because it is liquid filled, but nodules are a solid mass. Anyway.. It's just one more thing, and I am not thinking about it or dwelling on it until I need to.

However, Also while there she took my oxygen levels and my pulse rate. Once again my resting pulse rate ranged from 94-107 and when I increased my oxygen to 5 (the max) and walked around the building my oxygen levels dropped to 78 and my pulse rated went up to 140. Not acceptable. So... Whenever I am doing ANYTHING I have on the cannula and raise it to 5 liters per minute, then while I am sleeping I still keep it on level 3 otherwise my cannula makes a whistling noise that would keep anyone awake. Even the dogs take off running! LoL My concerns are that I am now realizing is that my concentrator at home max's out at 5 liters and my portable small tanks max's out at 5.... So then what??? Does that mean that I will just have to watch my oxygen levels drop and do nothing to stop it? Will I have to further limit my activity...which if I limit it any further I may as well stay in bed! Will that be the time they start lung volume reduction surgery? That is what scares me these days.

I decided to update my profile pictures on facebook, and my Friends site... Why not show my reality. There it is in all it's glory. I am finding that I can't wear my pretty long necklaces anymore, they get tangled in the cannula tubing and feel like the are choking me. Also, I can't wear dangly earrings anymore because the cannula rips them out. So for the most part I am just me, what you see is all there is.

Thursday, June 3, 2010

Mom's Tortilla and Black Bean Casserole

1 lb ground beef
2 cups chopped onion
1 1/2 cup chopped green pepper
1 14 ounce crushed tomatoes
3/4 cups salsa
2 15 ounce cans black beans
12-14 corn tortilla's
2 cups shredded cheddar cheese
sour cream and black olives optional

In a skillet brown hamburger then add onions and peppers. Salt and Pepper to taste.
Add tomatoes and beans and cook 5-10 minutes over med-high heat.

In a deep casserole dish layer...
Tortilla's (may need to overlap) I cut tortilla's in half and then layered them.
Next add hamburger mixture to cover tortilla's,
Then add salsa, sour cream, olives, then top with grated cheese and repeat.
Top layer should end up being cheese sprinkled with olives if desired.

Bake 375 30 minutes or until top is golden bubbly