Hey Hero Members!
I know you are there and I know you are listening. : ) I appreciate your encouraging and supportive words. By telling my story I feel like I am accomplishing some important work.... I have worked these areas over before but in different ways. I am grateful for the opportunity to re-visit my childhood and seeing how the patterns and themes repeat over the years; what I have learned and can continue to learn from that; and what strengths and gifts have carried me through the years as well.
While in grade school at one point I had a female physical education instructor and that was what I told myself I wanted to be when I grew up. As a Tom Boy I loved sports. I was unable to succeed in many physical endeavors however, due to a couple of congenital conditions I had but did not know about until later in life. These included a hole in my heart and hip dysplasia.
I also had an attention deficit , the non hyperactive type. I would often find myself in a day dream at the most inopportune times. The "spacing out" seems involuntary. I thought everyone else was smarter than me because I would forget things. It was also later in life that I realized I was smarter than the average bear.
Atrial Septal Defect:
Mom once mentioned the doctor heard a heart murmur when I was born. She said when I came for my first check up the doctor no longer heard the murmur. When I was 24 I found out I had a hole between the atria (top 2 quadrants)of my heart. Apparently the hole did not close all the way when I was born and started breathing. If the hole had been between the ventricles the murmur would have been louder and more easily detected. My heart had to work hard to get oxygenated blood to my brain. They repaired it surgically - but I will get to that later.
Alcoholism was not the only thing I was in denial about while growing up. It was in the 5th grade that we learned how to check our pulse, and the difference between a resting and active heart rates. They had us all check our resting heart rate. As each student was asked to provide their number of beats per minute, the teacher recorded them on the chalk board in a continuum from highest to lowest. It had been explained that a high resting heart rate attributed to a person in poor health. Before it was my turn to report my heart rate it became clear to me that my resting heart rate of 96 beats per minute was indeed faster than average. If I was in poor health I automatically assumed it was my fault. I did not want anyone to know so I lied about my heart rate. I chose a number on the high end of average instead.
After we did the resting heart rate the teacher had us running up and down stairs. I was breathing so hard it hurt. I found that I could not do many sporting events very well if they involved a lot of running, such as Tennis or even basketball. Softball I could play because I often only ran a base or two.
I remember once telling my Mom that my heart fluttered sometimes. She assured me everyone's did that - it was normal.
I tried to hide how out of breath I became during sports. I remember once in high school while I was playing on an intramural basketball team, I was dribbling the ball and running from the opposite end of the court. I got so out of breath. Since no one was near me, I stopped at mid court and made the shot. It actually swished through the net without hitting the rim. We also would run the "600" every year in school. I hated that and my throat would hurt for days from breathing so hard.
In junior high our class divided into 2 groups, one to run the 600, the other to use the trampoline. I was in the 1st group to run the 600. Afterwards while standing at the trampoline I became very dizzy. I went to lay on the floor until I felt better. The instructor did not know as she was outside with the runners. I never reported the incident to anyone.
In high school when it came time to run the 600, I simply refused after that. The teacher did not push the issue and I was so grateful.
In college our basic education requirements included at least a couple of credits in physical education. I signed up for canoeing. A physical exam was required and performed by a nurse practitioner. During the exam the APNP asked if anyone ever told me I had a heart murmur. I recalled what my Mother had mentioned to me about when I was a baby. The APNP advised I might want to get it checked out, that it may or may not be a problem. From that point on I told every doctor who listened to my heart, "I have a murmur but its not a problem."
It was not until I was 24 years old and in my first professional job that I had my heart looked at. I was living with a boyfriend (CH) taking birth control pills, and had become over weight for the first time in my life. CH had been a navy corpsman, and had a stethoscope. I was experiencing while at rest a sensation that my heart was "flipping over in my chest." When I listened with the stethoscope I heard my heart skip a beat when this happened. I later learned this was a "pre-atrial contracture or PAC.
While working in the field with one of the older nurses on my team, I confided to her about the irregular heart beat. The next thing I knew we were calling it a day and were heading back to town. Since my boyfriend had the car my co-worker also took the rest of the day off, took me to her house, insisted I call the doctor, made me rest on her sofa and fed me home made pea soup. Never trust a nurse!
From there I got evaluated, tests were run and I had surgery. They sewed a dacron patch over the hole. Within 6 days post operation I was sent home on blood thinners. A week later I was back in the hospital with 2 liters of blood and fluid in my pericardium (lining around my heart). That whole ordeal also taught me how afraid I was to self-advocate for my health. I also found I had trouble communicating with male doctors. A couple of them had me reduced to tears. I did not know I was out of breath because I had been that way all my life!
After they tapped the fluid off and stopped the blood thinners I improved, except I experienced a chest pain syndrome that reoccurred for years. Never found out what caused it, the cardiologist said there was nothing wrong with my heart and kicked me out of his office. It was not until I started using a CPAP machine in my 40s for sleep apnea that I stopped having the pain in my chest.
It was also a blow to my self esteem to have a scar down the middle of my chest. Who knew there would be more of that to come.
So what happened to boyfriend CH? He was 10 years my senior and I was supporting him financially. About a month after my surgery we were up at my family cabin. I was not much interested in sex with a healing breast bone, but CH forced me. I got away eventually and was sleeping in the front room when my brother D and the band showed up. CH went home and I went home with brother D. I moved out after that.
So how does this relate to what is going on today? I will lie to W to avoid getting yelled at, just like I lied about my heart condition because I thought it was my fault. And I often think everything is my fault. Why is that? Because I had an alcoholic parent who blamed everyone else for his trouble? I felt as responsible for my Dad's angry outbursts as I do with W's. No wonder how angry I am with W over this latest health crisis because I knew I was sick, he didn't believe me, and he yelled at me for not doing well! Also, it is because of my income we can live the way we do, and that he has health insurance. He lost interest in sex a long time ago and there is very little affection.
Two of my friends have agreed to be my designated health care agent in the event I become incapacitated. I need to do the paperwork but it is at least something I can do now to protect myself from W being in a caregiver role with me if I cannot self-advocate.
One thing for certain, there are reasons I am still alive today. I may not realize what all of those reasons are, but I know I have helped many other people so far in my life. I survived a hole in my heart with sleep apnea while drinking heavy amounts of alcohol and experimenting with an assortment of substances in my teens and 20s. I am a sober miracle to say the least.
Will continue tomorrow.....