New Year:Sing for Your Supper (PCOS Rant & Update)

Singing and cooking have so much in common, and I love both! Recipes are made from multiple ingredients - as are songs. Sweet, spicy, robust, and sour describe music or food. I have to be very careful about the way I cook and eat (I never have been able to cook something without eating some of it when it is finished...as well as taste tests along the way) because of a condition called PCOS (PolyCystic Ovarian Syndrome). Part of it is being "pre-diabetic" and often women with PCOS become diabetics later in life due to poor eating habits. Low calorie, low fat, are high fiber keys to coping. Sounds tasty, huh? Not so much. Well I like good food! I refuse to waste calorie intake on food that I don't absolutely love, and so I routinely try new recipes and modify old favorites to be healthy and bursting with good flavor.
In the same way, I love to learn to sing new music and improve old standards in my repertoire. I am a vocal coach, mostly working with children and young people ages 8 - 17. Hearing old favorites in their young voices and helping them to discover their voice is just as rewarding to me as an incredible low fat Alfredo sauce.
And so to wrap up this, my very first blog, I will include what I have come to fondly refer to as my "PCOS Rant". I wrote it five years ago (2005) while still struggling to find the right combo of diet and medication, and also attempting to conceive a child. So much has changed since then. Looking at where I have come from is illuminating and highlights the blessings that have come into my life. I hope it will inspire you to take charge of your own health as much as you are able. No human being cares more about what happens to you than you.

The PCOS Rant  

I am twice the woman most women will ever be... and I'm well on the way to three times. My bra size is made colorful by alliteration, and my dress tags read far too close to my age, but I have some news for you! In a society where is is quite acceptable to blame the other guy, I still have to defend my weight as my own uncontrollable sickness every time a walk down a street or through a building. Yet the monster in me is not my appetite. I live with my own worst enemy every day and night, propelled often unsteadily through my day by a body that is slowly killing itself. I have Polycystic Ovarian Syndrome.

Polycystic Ovarian Syndrome, or PCOS, is a silent precursor to many of the diseases that are killing women everyday including type II diabetes, breast cancer and heart disease, just to name a few, and it affects as much as 11% of women everywhere, yet as few as 15% of the women with PCOS know they have it. It is believed that PCOS may be responsible for as much as 70% of infertility cases and there is no known cure. PCOS may also be the underlying cause of obesity, hormonal imbalance, male pattern baldness, irregular menstrual cycles, adult acne, high cholesterol, sleep apnea, and so much more.  

Depressed yet? I know I was. I was very depressed and frustrated and angry for three years, but now those feelings come and go with far less frequency, though their intensity has yet to abate.  

Abate: verb. to become less  

Here's the irony of it all: my mind is not fat. My personality is not fat, and yet “innocent until proven guilty” does not seem to apply to those of us who are abnormally challenged by our bathroom scales. I should not have to be a math whiz to figure out my weight. Yet I must be when the needle swings beyond the maximum two hundred plus pounds and keeps on going! My chest is large enough to protrude beyond my ample stomach so that when I sit and look down I see my only legs, which are not so bad, sticking out from me. It not too awful a site, really, but then I catch a glimpse of myself in a mirror, window pane, or freezer case and I am startled! Since when am I so not slim? Oh, yes. Since forever.  

I haven't weighed less than two hundred pounds since middle school, a point well documented by physicians everywhere. “Have you come in today about a cough? Hop on the scale!” they almost gleefully command with compassion not unlike a Nazi commandant. “Have you come in today with a migraine? Hop on the scale!” “So you're in today about a splinter? Hop on the scale!” Even if you were just in the week before they want to know again, and you have no power to stop it. They say absolute power corrupts absolutely, but in this case it “corrodes absolutely”; corrodes the mind and ability to be tactful. That's the only explanation for seeing a new doctor, who of course has access to all your medical charts, and actually hearing him say, “You know, you need to lose some weight.” Really? I didn't realize, oh wise sage of health. Thank you. I think you may have just saved my life! Sherlock Holmes they are not. I do own a mirror or two, not to mention the fact that I live in this encasement of fat on a daily basis and they just met me! Why don't they let me give them a revelation or two about this body? A medical degree will never grant them access to my mind, my pain or my waist line, such as it is.  

If physicians had more tact and could manage to sound more concerned than condescending it might be a different story, but instead they sound like they believe that my eyes are fat and don't work properly just like the rest of me. Perhaps they believe that the fat has clogged my ears and so I've missed all the other doctors saying the exact same thing to me. Trust me, I've heard it all, including the fertility expert who told me to go see a bariatric surgeon before coming back to him. Granted, I know realize that my body would not deal well with pregnancy for many practical reasons, but the tone of dismissal I received was insulting to say the least.  

Living with PCOS is not easy, but it doesn't have to be devastating either. There are options other than debilitating depression, dangerous dieting, and death by dark chocolate.  The key is you have to want defeat it as desperately as you want air in your lungs just to get through some days with sanity still on your side.  

**Update: PCOS - 5 years Later**  Today I woke up and realized that it’s been five years since I poured my feelings out in written form about the monster that lives within me – yes, I am literally tipping the scales in my favor in my war with Polycystic Ovarian Syndrome. Not everything I felt then has changed, but much has. To begin with, the monster and I have learned to coexist. Thanks be to God, a few years ago I found a doctor that respects me as the 24/7 combatant of this beast.  He knows I am the one that knows it best as it has manifested itself in my particular and unique body. Together we have found ways to turn my rollercoaster hormones into a straighter, smoother road to travel along – and we have told my insulin what to do with itself. When left to its own devices, my insulin wants to become fat in my abdomen and a few other choice locations.  

I am no longer nearly three times the woman I should be, more like twice now, and I don’t have to be a math whiz to figure out weight on an analog bathroom scale. For some time now, I have avoided the scale altogether. In fact I even shut my eyes at the doctor’s office and kindly ask them not to reveal the not-so-magic number. I simply ask my beloved physician if I am doing well. He has been replying “yes” for almost two years now. The pounds went on over 20 years…dropping them quickly is not recommended. I have thrown out my size 26 shirts in favor of my new 18/20’s.  

So what is my mind set now? I am happy. I am content. I am confused.  

I have learned what I consider to be one of life’s greatest lessons: to be content and even cheerful with the hand life has dealt me. I am at ease with the circumstances I find myself in, and yet there are times I am questioned with horror by some well meaning people around me as to how this could ever be a life I am satisfied with.  

I am happy without having children.  

Are you appalled? Are you confused? Are you skeptical?  

Well if you are you are not alone. It is apparently quite unbelievable to reproducing masses at large that I am content to live my life in a childless haze of happiness. Most respond with, “Why?”   I do realize that my feelings do not line up with the majority, but has it ever occurred to these inquisitive folks that perhaps it is not something I want to share with them – and it may not be any of their business anyway. However, when I tell them that we tried for 6 years to have a child usually I get “the look”. The o-you-poor-thing-what-you-have-suffered-now-I-understand-why–you–have-deluded-yourself look. Well, yes. Suffering and I are not strangers in this area, but I am not deluded. If anything, I feel that holding on to the idea that children will make my life complete would be a delusion. The simple fact is that a frightening number of babies are being born regularly to girls as young as fourteen. This leaves me not just appalled, but also filled with the assurance that my choice not to have babies will in no way lead to the downfall of the human race.  

Then comes one of two responses from the now sympathetic well wisher: “You know when you decide you don’t want children, that’s when it happens” or “you can always adopt”. Both are ridiculous and utterly unhelpful. I came to this state of blissful acceptance about three years ago and the status quo in the baby department is unchanged. I have already mourned for the children I will never have. It was beautiful in its way. Tears were shed, and God and I held many lengthy conversations. It was very special several days to me, and it was the beginning of healing a wound in my life that at one time was nearly debilitating. Now I am no longer wounded…and few can understand, let alone be happy for this fact. However, I’ve chosen to forgive them and not let their judgment cloud my contented state.  

As for adoption, saying that someone can “always” adopt is just about the height of ignorance. It is a lengthy, painful, humiliating, and often expensive process – at least it was for us. We did begin adoption proceedings with a birth mother several years ago. We met with a lawyer, exchanged many phone calls, started to prepare a nursery, and then she backed out when she was 7 months pregnant. We didn’t have a lot of money so we had held a few fundraising events to help pay for the very expensive adoption process. All the money we raised went to pay the lawyer in the end, so at least we were not left childless and deep in debt. My mom even made a baby quilt with the characters of Beatrix Potter – whose stories I love. That quilt is in a box at her house. We were treated to criminal background checks and our house was inspected to be sure it was fit for a human child to inhabit - if only people that could birth their own children were so closely inspected first. No, adoption is not a route we want to go down again.  

And so I am contented. There are a few lines I have to draw, however, in order to keep my sanity and keep a grasp on this happy life. I do not go to baby showers. I send a note of apology for being unable to attend along with a gift. I do love to shop! Shopping for baby items does not make me weepy or angry. The realization of that fact was one of the first indications that I was truly joyful in my childless life.  

I do, sometimes like to imagine the faces of people if I were to ever remove my “polite” filter. My husband and I have been married for over 10 years now. When we meet anyone one, especially other couples, we first exchange names and then they often ask how long we’ve been married. Sometimes they skip that question and go right for the throat – either way we are invariably asked, “So do you guys have any kids?” If it were not for that filter I would happily and cheerfully reply, “Nope. I am barren. And you?” The reproductive portion of the population, and they are the majority, rarely if ever stop for a moment to think that there are people how are unable to have children. Most people are not alright about it like I am. There is a lot of hurt and anger associated with the reproductionally challenged. My thought is that if just once I gave an honest answer like, “I’m barren”, perhaps they would think twice about asking anyone again. Maybe the next time would have been with a woman that really could use a break from the question, and her pain might be averted.  

The funny thing is that, in my experience, people with children usually volunteer information about them without ever being asked. I never ask if people have kids yet I am always hearing about their children anyway. I occasionally wish I knew the magic phrase to shut off the torrent of information about how many months this one is, how the potty training is going, the play-by-play of little league games, and the cutest thing someone just said. Sadly, I do not know a magic phrase, but I digress.  

So, now that you know probably too many details of my experience you can perhaps begin to understand the some of the pain I have felt in my life. Perhaps now you are wondering why I am not rending my garments and shaving my head at least bi-weekly.  I am happy in my circumstances. I am a blessed woman. My husband is outstanding!  My life is pleasantly busy. My family is amazing! My God loves and provides for me. What more can anyone ask for?  

In addition, my life is anything but childless. I have the three most wonderful, beautiful nieces in the world. I am teaching voice lessons to eight young people at this time, ages 7 - 17. My husband and I volunteer with our church youth. Along with a dear friend, I began a youth mentoring theater company in April of this year. Some days I am crawling with kids! I can pour love, encouragement, and wisdom into their lives – and then send them home! It is an amazing arrangement!  

I realize that unless you have experienced the issue of infertility that you will not be able to ever fully understand where I am coming from so you’ll just have to take my word for all this. I am not socially impaired. I am not a child hater. I am not a leper or an alien. I am not envious of people with children.  

I am fulfilled without children. I am 33 (and perilously close to 34), and I am childless and happy!  Why should I be sad and depressed? What good would that do me or anyone? I make spur of the moment plans regularly. I go out at 10 o’clock at night with no though for babysitters or nighttime feedings. I sleep in if I want to. I use the restroom without anyone following me into the room. When at home, I do many unmentionable things with my husband whenever and wherever I want to – my only thought is “Are the blinds closed?” I get loads of work done from my home without interruption. I can watch loud movies late at night. I can dash in and out of gas stations, post offices and wherever without having to unload and reload anyone else in and out of the car. I can leave precious objects and musical instruments unguarded in my home. I have peace and quiet anytime I want it.  

I love my life. My monster is under control. Wouldn’t it be a beautiful world if everyone could say that?