Tonight's picture was taken in April of 2002. It was five days after Mattie was born, and I was getting discharged from the hospital to take Mattie home. I was in such bad shape, that the nurse questioned me by saying..... do you really want to go home? Meaning they could have made a case for me to stay longer. I was filled with fluid, had pain from the emergency c-section, I was exhausted from two days of labor, I was developing post partum depression, and then living in a hospital for five days being constantly interrupted I was strung out. I had enough and felt like it was time to go home, because as I told the nurse.... eventually I would have to figure out how to care for myself and Mattie.
Quote of the day: One’s dignity may be assaulted, vandalized and cruelly mocked, but it can never be taken away unless it is surrendered. ~ Michael J. Fox
My health insurer has now let me know I have been denied two things. So far, I am fighting to get access to the bone density drug, Prolia, and the latest denial is for a MRI of the breast (mind you they covered it last year). After meeting a breast specialist last year and enduring an extensive history, she has classified me as high risk for breast cancer.
I have been on a journey with this doctor, because she had me have a consultation with her genetic counselor. This was several months ago. I literally gave the genetic counselor an education, as I found her demeanor truly lacking! I loved how she referred to herself as a counselor, who has as much training as someone with my degree and license. THAT DID NOT SIT WELL WITH ME, particularly because I know that is incorrect. How do I know this? Because I sat on the Washington, DC Licensure board for counselors for over 15 years. I knew the ins and outs of our laws and regulations, and don't you know it, genetic counselors came before my board often, asking to apply for our mental health license. They would make a case that their education and training was equivalent to mine. Which meant that I had to understand their curriculum and training requirements first before being able to make a decision. After a lot of reading and delving into this issue, I was able to determine FACTUALLY that genetic counselors are NOT equivalent to a mental health counseling degree.
I truly resented having to see a genetic counselor. First of which, she tried to push a battery of tests on me, most of which aren't covered by insurance. Then she let me know that if any of the tests indicated that I had certain genetic markers for cancer (they test for breast cancer, but MANY OTHERS), this will make it hard for me to get health insurance if I changed my current plan. Truly insane, what a system! Now if all of that did not get me, then it was the total lack of regard for my psychosocial state or what was going on in my life! Don't you think it would have been important to find out if I was going through a major life change at the moment, before taking on such testing? At the time I was separated and knew a divorce was imminent. Which also meant that I knew my health insurance was going to change! I am also quite aware of the fact that I have no support at home for myself. Therefore, if I get sick, God forbid, I am up a creek. This is NOT a good time in my life to hit me with genetic testing, but of course if you don't ask questions, you then are ill informed about my life and whether testing would be a good fit for me. I lectured her, because I wanted her to know how insensitive she came off and if she was going to provide ethical medical care, she needs to stop, think, and invest in the whole patient.
What I concluded is that testing or no testing, my current treatment of scanning every six months, would remain the same. Why am I telling you all of this? Because, I find it absolutely incredible that a health insurer would deny my authorization for scanning, when a doctor deems it necessary. I am not sure why I am surprised, since I think the healthcare system is broken. Doctors are NOT in control, the insurer is, and the insurer is more concerned about the bottom line and not the patient. I juggle so much in any given day, and now I have to add fighting the system to get access to the preventative care that I need.
Typically we go out every Saturday and Sunday, but my mom wasn't up to going out yesterday. But today we did go out for brunch. Some days if I sit back and observe my life, I can get very depressed. My dad can't remember anything from one minute to the next. He could eat something and two minutes later, he can't recall whether he ate or what he ate. His memory loss is so significant that he has NO short term memories, and has little to no long-term memories. My dad doesn't recall living in New York, he doesn't recall living in California, he doesn't recall his work, his colleagues, and the list goes on. In addition, he doesn't understand what happened to my marriage and when he sees my husband's car now, he asks me why it is parked where it is versus at our home. So in a way, I experience the loss of my marriage daily in so many different ways.
A day or so ago, I was talking about Mattie. My dad had no recollection that Mattie had cancer and that he died from cancer. My dad has no idea what month my birthday is and this may sound sad for him, which it is, but it is very depressing and frustrating for me. I am the only one in my house with an intact memory. My mom is certainly better than my dad, only because she tries to cover and mask her issues. However, she will listen to the same podcast over and over, watches recorded programs over and over, and isn't aware of the fact that she has seen or heard them already. Her ability to read and process information are almost non-existent and I think knowing what I am enduring with my marriage has taken a large toll on her.
I face so many little and large scale losses on any given day. It is a wonder I can function. Tomorrow, my parent's see their rehab medicine doctor. Since the location of that office is closer to where Mattie's memorial tree is located, I decided we are visiting the tree before the appointment. On Friday, April 4, Mattie would have turned 23 years old. Visiting Mattie's tree has always been hard, but now I visit the tree alone, I parent Mattie's memory alone, and I carry on his Foundation alone, and the keyword in my life is ALONE. ALONE BUT NOT BY CHOICE.
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