Saturday, April 07, 2018

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





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