Mom Suffering With Cushing's Syndrome

Mom and her first grandchild, my son, Jeffrey

Lately I have been thinking a lot about my Mom. She was unfortunate in her life that she had many health issues. When she was very little, a babysitter took her and her infant sister, Emily and her other sisters, Francis and Edna fishing in the river when it was still cold. My mother and Emily got pneumonia and had to be rushed to the hospital. Emily did not make it. Mom also had Rheumatic fever as a child which left her with an affected heart but for the most part, I don't remember it giving her any problems. I don't know what year she had appendicitis, but it was very strange how her attack of it happened. She went to the emergency room in terrible pain and nobody knew what was causing it because it was in her back. The doctors did exploratory surgery and found it was her appendix that was in the wrong place. She was suffering from appendicitis! The funny thing about that is everyone in my family, my father too, my brother and I have all had this. My brother had his appendix out in January of 1982 and I followed closely a couple of months later in March.

Me, Mom, Daddy and Mickey

My mom's pregnancies were both life threatening. My brother, born in February of 1950, was a month late. The doctor called her and told her to meet him at the hospital that he was going to take that baby out. Mom always laughed and said that my brother has never liked change and that it started in the womb. True! I was born in June of 1952 and her doctor was not happy that she ignored his advice and got pregnant again. He had told her not to, but she always told me she did not want my brother to be an only child. She grew up in a large family and wanted one of her own. Well that was not to be. She had to settle for the two of us.

Me

When I was born, since it was summer time, it was very hot and that was before air conditioning. The doctor did a caesarean section a couple of weeks before I was actually due. She almost died through that ordeal. She told me she thought she was going to die and leave my father with two small children to raise. The nurse who cared for her in a local Catholic hospital was the Mother Superior of the nurses and she took excellent care of her. They had fans blowing on her to try to cool her down. It was a real ordeal. She made it though and was a great mother. When she came home from the hospital though, my grandmother stayed with us and took care of me and my brother. I think that was the time my grandmother and I developed a special bond. She always called me her birthday present since I was born the day after her birthday.

My parents and me, 1979

After that things seemed to go okay with her health. My father's health seemed to be worse than her health during the years I grew up. Then around 1976, she started having a problem that she called "phasing out" when she was at work. She was a receptionist for a large factory, all of a sudden she would feel like everything was far away from her. I used to faint and it reminded me of that feeling I got when I was just about to faint, before I hit the floor. It took a bit of time going to doctor's appointments and having tests until she finally was diagnosed with Cushing's Syndrome in 1978.

If you are not familiar with this disease, it is not surprising. It was considered very rare when Mom had it. I do not know if it is still so. I know animals get it, especially dogs and horses. I always suspected my own dog, Nikita, may have had it. My mother was scheduled for an exploratory operation to see what was wrong. The surgeon, who by the way, had an excellent reputation in our area, turned out not to so good after all. Mom's doctor had instructed him to take out her adrenal glands if he saw anything that shouldn't be there. Like a tumor. Instead this doctor took out her gallbladder! Why? He said it was full of gravel. Yes, but that is not what was the problem at this time. Later when her doctor sent her to Roswell Park in Buffalo, her doctor there, brought in his students and said, "this is a lady who had unnecessary surgery." His exact words. My mother being who she is, she would not submit the surgeon's bill for the gallbladder surgery to Medicare, nor her insurance. She wrote him a letter and told him what they said about unnecessary surgery and that he could have saved her from months of suffering and healing from that operation. She never got another bill or heard from him again and his bill was more than $5000.00.

Even though Roswell Park is considered a cancer hospital, her doctor sent her there because they are good at finding the cause of hard to diagnose cases. She didn't have cancer though and many of our family members and friends figured she did if she was there. No, not at all and she was there a long time. They did operate and took her adrenal glands out. They were producing too much cortisol due to a tumor. For the rest of her life she had to take cortisone and if she was in a stressful situation, she had to take it by an injection. She also relied on a pain medication, Darvocet. I believe she was addicted to it but what did it matter? I see it has since been banned. She ended up having two hip replacements and a knee replacement, but they didn't really help her be more mobile. One of the things that happened to her while waiting to find out exactly what was wrong with her was that her bones disintegrated. First she had to use a cane, then crutches until the last few years of her life, she was in a wheelchair and mostly bedridden.

Daddy

My father took excellent care of her. He cooked and cleaned and took her places and kept her as cheery as he could. When I went there to give her a shower and wash or color her hair, she would cry to me in the bathroom. Especially in the last years, she would tell me she wanted to die. She went to the emergency room many times and would end up in the hospital for a week or so. Most times the hospital had no idea how to treat someone with this disease. I remember once being at the local hospital emergency room and the male technician jabbing my mother's worn out veins trying to find one. When she screamed, he turned away laughing! I was so mad but did not cause any trouble because I just wanted to get her out of pain.

Me and Mom before she got sick

She passed away in 2002 and it was the final relief from pain for her. I felt so bad that my father and her could not enjoy their retirement years. In her case, nothing could have changed what happened to her. No organic food or easier living, if you have something like this occur. Nothing. She stayed in shape her whole life, swimming being her choice of sport. Especially when we lived in Florida. My father grew a huge garden and they ate well. She did not fix a lot of sweets or frozen dinner types of things. So it wasn't that it was their lifestyle or food that caused her problem. Just one of those things.

Copyright © Kathleen G. Lupole 2018

All Photographs  © Kathleen G. Lupole 2018

Waiting For First Light

I arise quietly, to dark and cold,

my house is still and quiet,

the heat from a wood stove,

barely heats the room in its banked

back state. I open the damper to wait,

till the heat penetrates the room.

I turn the burner for the coffeepot on,

waiting to hear the perking begin.

As I wait I watch the dark sky,

waiting for that glimpse of first light.

It shows in the sky before the sun rises.

For some reason I like to watch for it

in the early morn, when the house is still.

Drinking my coffee and planning my day,

thinking, praying and mediating,

a time with no distractions or noise.

I try to find happy thoughts in the day,

maybe it is just a little thing or two,

nothing special to another person,

only to me, little things that make my day.

Such as a nose rub from my bunny boy,

a left over cheese cracker from supper,

a flower growing along the path,

or a crow picking up a scrap on my road.

Simple things, simple thoughts,

make my day start with no stress or upset,

worries that I can’t do anything about.

Start my day with a smile instead of tears,

positive thoughts begin a positive day,

so I hold on to my happy mood as long

as I can. When I am alone I can hold on

much longer, when others disrupt my thoughts

with anger, temper, whining, complaining,

it is hard to remain calm and peaceful.

I once had peacefulness in my life,

but it was never here, where I am now

longing for it for years and years.

People say if you are alone, you are lonely,

that would be wrong for me,

after living most of my life with others,

I found I was most lonely with them.

Being alone means freedom to choose,

what I will do with each minute of my day.

Making the choice to stay up or go to bed,

buying the food I like to eat,

spending my money on what I choose,

I am free to do what I want, when I want,

and to me, that sounds like heaven.

So I contemplate my future from here,

what it will be, when it will start.

How I will do the things I must,

on my own, with no help at all.

Is it possible or is it a dream,

a hope that will fade in time once again?

No! It must not fade, it must not be a hope

at all. It must take place no matter what!

I will fight for my freedom, like a tiger

in a cage. I will not give it up this time,

no matter what. I will plan my future

and follow through, I have the strength

to do this now. I will never be in this position again.

I will be happy, alone and free, not lonely or miserable, not ever will I be. Life is short and best to choose happy, over a mundane trivial 

existence. If you can. I can. If I cannot, then life will not be worth living. I will do this and my future will be bright, happy and free!

Copyright © Kathleen G. Lupole 2018

All Photographs  © Kathleen G. Lupole 2018

Updated 2023

Time Marches On

I read something I wrote eleven years ago and it still is true today. It caused a pain in my heart. Like I had been stabbed. It was something I needed to change in my life and was miserable about. Instead I lived with it for all those years. I am hanging my head in shame! No excuses! I know everyone would say to me to make it work. Keep trying. Don't give up. Easier said than done. Especially if things are so bad that you are always upset, mad, sad, crying in your pillow every night.........then get the heck out of that situation! No matter what it is. A relationship, a lifestyle, a job, a location. Just cut your losses and get out.

These type of situations hurt and make you sad while are living it. If you don't make the change, then your life is hopeless. So you must bite the bullet and make the change. If you find it hard to do, that does not matter. Do you really want to keep doing what you hate? Every day for the rest of you life? Living a life you hate is like just waiting to die. That is why so many people sit in front of a television all day long. Just doing the same old trivial things they do day after day. Time marches on.

If you are miserable.........get up right now and do something, anything to change it. Start making changes and once you do, you will never look back. It is not meant for our lives to be so boring, mundane and miserable. They are meant to be lived to the fullest every day! Make a list of whatever you need to do to get started. I have been doing this for a long time now. The difference is, this is my first year that I have actually started making the changes I must, to go on with my life. At times, my pain of my situation has been staggering. I do not really suffer from depression, it more like sadness of wanting to make changes in my life and not knowing how to get started. Or even being able to do so due to my finances.

My Daddy's chestnut tree that he planted

What I have learned in my own search for happiness, independence and freedom is that at times in your life you must accept help from others to get yourself started. Once you are out there, then perhaps you can find your own way. Otherwise you never will. Not getting started will keep you in a miserable life forever. Life is so short that you must take your chances when they arise and strike out to create that life you see in your head, mind and dreams. Yes, it is possible but you must at least try!

Copyright © 2018 Kathleen G. Lupole

All Photographs Copyright © 2018 Kathleen G. Lupole

Life Gets Me Down At Times

I have learned over the years that when I am down, I am not down low enough. Some circumstance always happens to make it worse, lower or impossible. To be honest, my whole life, not just now, but from the time I was grown up, my life has never been happy or that good. I try to make it sound like I am happy when I write and on social media. It is just a front for the world. Nothing ever has worked out in my favor. I know, you are probably saying, "Oh, that  is not true." It is though. Life has not been good to me. Even the years that I was married to my first husband and didn't have any money worries, my life was miserable. I won't go into why and what he did, but he was a pretty low human being.

When my brother and I were growing up, we didn't have a lot of money but we lived good. My parents both worked and we always had a nice home, two cars and all the conveniences. We had a lot of friends and never any real problems back then. But when I grew up life seemed to be hard for me.I was a single mother for a number of years and truthfully, I was too young for that job. I always say my son and I grew up together. We did, since I got pregnant at 16 and was a mother at 17. Way too young!

I ended up marrying for the first time when my son was 9 years old and I was 27.  Up until then, I had not really wanted to get married or tied down to anyone.I enjoyed my life as a free spirit, as I called myself, when any guy tried to tie me down.  My first husband was a successful local businessman and knew how to impress a young woman. He did. I married him. Yeah, we lived the good life, but I was far from happy with him. At times I felt like he was my father or my keeper instead of my husband. Needless to say, I ended up divorced from him after fourteen years together.

But........life goes on. So it shall now too. My life is in the middle of big changes that I am looking forward to. They are coming and I am making them happen. Nobody else is.

Copyright © 2018 Kathleen G. Lupole

All Photographs Copyright © 2018 Kathleen G. Lupole

Happier Times Ahead

Losing myself was easy to do,

just following along, living in the moment,

not remembering what I was about.

Not making goals of my own,

or plans, I had forgotten,

for good it seemed, never mentioned again.

At times I glimpsed those dreams, in times of sadness,

a sadness that never completely left.

I wondered why, when I had it all,

or so I thought at that time,

my life had changed and I felt abandoned.

Instead of crying over what was, 

or what had changed, or why.

I decided to make my life

the way I choose, now.

Not to sit and cry or be sad,

take those steps and break away.

Cut that rope that binds me, as soon as I can.

Make my own life by myself,

dependent on no one.

Bring back my health, I know I can.

Build my friend network and laugh again,

laugh with friends, laugh with cousins,

have some fun for a change.

I am done with being sad forever,

for never having a friend,

or just not having a free day

a day to do what I want without

worrying about what someone else will say

I am done with watching my words

to not say something in a tone of voice

that someone might take the wrong way

Hoping for freedom from this life,

wishing it would come tomorrow.

I need to find myself and in doing so,

I will find happiness once again.

Once I started working on a plan,

I got excited to think I could do this.

It is really going to happen.

Now nothing will deter me as the time nears,

sorry to cause pain and hurt in doing so.

but I must do what I must do.

Have to stop putting my life on hold,

because of feeling sorry for someone.

My life was wasting away,

day by day, locked in a prison of despair.

Now I have something look forward to,

a life of joy and independence.

I can't wait.

Copyright © 2018 Kathleen G. Lupole

All Photographs Copyright © 2018 Kathleen G. Lupole

On My Walk Yesterday

Snow melting in the forest

 On my walk yesterday in the forest I visited my critters' graves. It is not as well cared for as it once was. My husband took good care of it, but in the last few years not so much. I guess he got tired of it. The land behind it was bought and made into a hunting camp. He does not mow the path to it anymore or go out that far now. It was promised to be sold to us but the guy who owned it, a local politician, did what all those people do. He sold it real cheap to someone else, but for us he put a high price on it thinking we would want it so bad we would pay any price. No, I refused. Now it doesn't really matter to me as I am not going to be staying.

Peaceful Forest Cemetery 

Regardless, my beloved pets, Cinders, my black cat, Pepper, my other black cat, Lil' Red and my treasured pet, Rhode Island Red hen, are all buried there. Then in 2013, Nikita, our dog and best friend in the whole world died at at age 15 and she is buried there. She still does not have a stone on her grave. The next year, 2014, Callie Cat died at age 13 and she doesn't even have a marker yet. I need to take care of those two stones this year, as soon possible.

Nutmeg

My last Siamese cat, Nutmeg, is buried in the backyard with a very nice stone, but I never got her name put on it. I would like to do that this year, if possible. She was 17 years old. She had been through a lot with me and lived in Florida when we moved there. On the road in an over-the-road truck as hubby took us on his job, we got to see the whole country. It was fun for her and me.

Cinders

In 1999 we moved here with Nutmeg, Nikita and Cinders. Cinders was a male cat that had been neutered, but he still wandered out into the forest. His hunting instinct was sharp and he always brought back something to share with Nikita. One time he went out and never came back. While he was out, I heard a gunshot and for some reason my immediate thought was, "Cinders"! Well I never saw him again. I loved him so much and looked for weeks for him. I felt so bad about losing him. I guess it was my choice to live here and that meant my pets were at risk. In my previous life, I would have never allowed them to be outdoor cats. That was my fault in moving here.

Lil' Red and Nikita were best friends

Copyright © 2018 Kathleen G. Lupole

All Photographs Copyright © 2018 Kathleen G. Lupole