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The American Fertility Association Blog
Mama Said There Would Be Days Like This…..
October 31, 2007 - Wednesday
Posted by Pamela
It has been a really tough week to be the Executive Director of The AFA. This was the kind of week that I thought about opening up an ice cream parlor....where the most complicated issue would be whether the client wants colored sprinkles or chocolate...or replacing a child’s fallen cone. This is a tough blog to write. But nobody has ever called me a shirker.
The AFA is an organization in the midst of growing pains that would rival my 15-year-old son’s. Mistakes? We made ‘em.
We stirred one helluva storm, a n’oreaster in fact, with an advertising policy that we thought protected the integrity of The AFA. Boy were we wrong.
I believed our bright and bold disclaimers at the top and the bottom of every ad that went out under The AFA banner were enough to make it clear we didn’t endorse anything, that we were just the conduit. It’s what we’ve always done to help raise sorely needed revenue that enabled us to keep membership free and the organization alive. We’ve never been called out on it before. But in the last few weeks we’ve gotten an earful. So...once again...if an advertisement comes through your email from The AFA...or you read an advertisement in our resource directory...or click a link on our web site....these are advertisements...they are not endorsements.
The AFA does not endorse any programs, products, procedures or services. If you are unsure of something..please speak with your doctor...and find out what they think!
I want to assure you that we’re fast learners. On this Friday, our executive committee of the Board of Directors is meeting to review our policy and responsibilities around advertising that bears our name.
For many of you...I am sure that you do not have a clue about what I am talking about...and for the others who were feeling upset or confused over advertising that you may recently received...I’m so sorry that our actions have caused such distress.
I do want to say, however, that over the years as I’ve talked about and on behalf of all the constituents of the infertility community (patients and doctors alike). I believed we had the unconditional support of the allied professionals and the industry. Instead, I find, there’s been a flourishing misconception that our patient advocacy organizations are perceived as a marketing tool.
In fact, the AFA never was and never will be that. We were founded by patients. I was a patient. Most of my staff have been patients. We live and breathe this organization...and we serve from our hearts.
So let me be clear...we are only about serving the expanding population of people increasingly concerned with fertility and reproductive health.
Perhaps The AFA was naive in believing that the financial support coming our way had no quid pro quo, no financial benchmarks such as “return on investment.” Yet in the last two years, that’s all we hear about. We rarely hear about the welfare of the people we serve. And so, as the ROI becomes harder to calculate as the double-digit growth in the number of people seeking treatment not only levels but may in fact be shrinking, the funds for patient support are drying up.
Can you imagine anyone supporting the American Cancer Society demanding a return on investment? I can’t. And I’m learning I should never have those discussions when it comes to the best care for our members either.
Our challenge is to find ways to replace the revenue that has gone but on which we depend. We’ve got some leverage in the wonderful programs and projects we’ve created. We’ve got new ones that will come on line in the year ahead. But, we need to do more.
As difficult as these last few weeks have been, we’ve forged ahead. The good news is that we’re planning a 10-city tour that we’re naming “The Patient Summit.” And I will be talking more about that program in the weeks to come.
I will be going to major cities all across this country...and I am going to be asking YOU what you want...what you need...and I am talking about all of you!
It means I won’t be home very much this year. Instead I might be at your local Y or women’s health center. This is the year I’m sitting face to face with infertility patients, REI nurses, REI physicians, OB-GYNS and listening. With what we learn, The AFA will publish a white paper to truly educate stakeholders on what patients need now.
I wish to extend my heart felt appreciation for the support all of you in our community have shown us. Many of you have made donations...written for us...and offered to volunteer.
I am grateful to all of you from the bottom of my heart.
Until Tomorrow,
Pamela
Categories
Adoption •
Fertility Preservation •
Reproductive Health
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“What Did You Call It?”
October 28, 2007 - Sunday
Posted by Pamela
I can’t stop smiling.....It’s Sunday morning and I am sitting with my cup of coffee and The New York Times....I open to the “Sunday Styles” section...and the cover story is called...”
The “It” in question is female genitalia. You know...most of us women...and most men were taught to call “It"… “The Vagina”. And the new in vogue word...a word that was apparently coined by the television series “Grey’s Anatomy” and picked up by the likes of Oprah and has found it’s way into electronic dictionaries like Urban Dictionary....is...are you ready? “Vajayjay”.
Now...I have never loved the word “Vagina”. It’s very clinical....and if we are going to be clinical...and let’s face it..."Vagina" is a clinical word...it’s not an accurate word as a description for the complete geography of a woman’s genitalia as the Vagina is the canal that leads from the uterus to the outside of the body...I have tended towards using the word “Vulva” when talking about female genitalia as this word includes the clitoris and the inner and outer labia.....the pleasure centers of the female genitalia....which feels excluded when we call our genitalia only by one section of it...."The Vagina”.
Now...reported by The New York Times..."The swift adoption of vajayjay is not simply about pop culture’s ability to embrace new slang. Neologisms are always percolating. What this really demonstrates say some linguists, is that there was a a vacuum in popular discourse, a need for a word for female genitalia that is not clinical, crude, coy, misogynistic or descriptive of a vagina from a man’s point of view.”
And I agree with this part of The Times reporting...most women...and indeed young girls do not have language that they feel comfortable with to name their genitalia...and if we don’t have language in which to name our bodies that we are comfortable with...then how are we suppose to communicate about our bodies?
How do we communicate sexually? How do we communicate medically? We want young women to be able to ask for barrier birth control to protect their bodies from STD’s, HPV to prevent infertility...and preventable cancers...and life threatening HIV… as well as unplanned pregnancy....but if women have no comfortable word to use when they talk about their own bodies...how are they suppose to effectively communicate even more difficult issues...like saying no to being touched on their genitalia at all? Touched where??? What is the word? Or buying a condom? Or asking for one?
Can she even say the word? Many women of all ages have lived in a vacuum of no words when it comes to their sexual selves. And The AFA is committed to language...because without language we live in a land of just letting things happen....because “good girls” are never prepared..."good girls” would never have desire....and “good girls” don’t have language to communicate their needs. And without language...how are we suppose to communicate effectively with physicians?
Will women even see a gynecologist if they are not comfortable enough with their our own body to name it?
I do think that any word that popular culture can come up with to assist women in speaking about their bodies...is breaking the code...the code of silence. If we have no language...we have no voice....and we need language that each and every one of us can speak....so...if Vajayjay gets one woman to speak about her body....no matter how silly it may sound to my ears....welcome Vajayjay....
Categories
Fertility •
Fertility Preservation
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Facing Our Fears….During Breast Cancer Awareness Month
October 25, 2007 - Thursday
Posted by Pamela
In case some how you missed the sea of pink....October is Breast Cancer Awareness Month.
In my world...I live with breast cancer awareness all the time. My sister is a wounded survivor. She was diagnosed with breast cancer when she was 51. That was four years ago. She had a bi-lateral mastectomy and then reconstruction. In the scheme of things...the breast cancer itself was nothing. It was not in her nodes..she did require further treatments after the surgery for the cancer...but she caught that wonderful antibiotic resistant strain of staph in the hospital during her surgery. She has been suffering ever since.
I really love my breasts. I like how they look....and mostly I like how they feel. They are a big piece of my sexuality.
It is hard for me to think of my sexuality without them.
Yet my sister has lost that pleasure. Reconstruction which is an amazing thing...except that you don’t feel your sexuality through these reconstructed breasts...they are cosmetic...and that is important.....but it isn’t what it was. And yet she still goes on being sexual...and everyday she lives with not knowing if her implants have to come out again because of the infection...she has had this done four times...my sister has not just been struggling with breast cancer and it’s after effects...she has been suffering.
My last mammogram was when she was diagnosed. That was four years ago...I am a little overdo!
The staph has been in the news lately.....18,000 people have died of it this year....more than AIDS. And she is having her implants removed again today...and starting another round of IV antibiotics.
After watching my sister suffer for years now....I have been terrified of going for a mammogram. I just can’t face it....can’t face the possibility of doing this too.
We both faced infertility together....I don’t want to do this with her too....anymore than I am already. It turns my bowels to water. You cannot imagine what I have been witness to.
But today, in honor of that damn sea of pink...and my sister...and my family...and myself...I am going to face my fears....
I made an appointment. The only day that they could give me is today. The same day as my sister’s surgery. Is that ironic? That day or wait until January. I took it...shaking in my boots. I also booked a sonogram too.
I am going. I am scared and distracted....I just can’t imagine going through what my sister has been through...or actually.....the problem is that I can.
So....what about you? What are you distracted with...frightened of....why haven’t you gone...I bet that a lot of you haven’t....
If I can do this...you can do this....make an appointment...do it. Let’s face this fear together and put it behind us for another year!
Enjoy the weekend,
Pamela
Categories
Fertility •
Fertility Preservation •
Infertility
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On Surviving Infertility…..
October 24, 2007 - Wednesday
Posted by Pamela
Infertility is a disease that affects people from all races, professions and economic levels. We struggle to do what others think “comes naturally.” We desire to be a part of a community which often centers on family and children. We too, would like told hold our infant among adoring relatives, push our strollers down the avenue, and see simple wonders of the world through the eyes of our child. We want what most people in America and indeed, around the world value the most in their lives...a family.
Often, we feel set apart of the daily rituals of our community. Something as commonplace as a family gathering, a baby’s Bris or Christening or even how we choose to spend a Saturday afternoon, can be yet another line of division between ourselves and our fertile friends and family. I would like to take a minute, acknowledge those of you who are reading this...and your personal courage..
But it is only in recent days that infertility has come out of the closet. For the television shows and print media, one would think that infertility is a very public issue these days. But today, the media, if not us, have come out of the closet. We only have to turn on the television or open a magazine to see the personal dramas of infertility played out through the eyes of the tabloid media. It might be encouraging for you to know, despite the coverage, that on average, the infertile as a group spend less than three years in treatment and most of us leave treatment with biological connected children.
Much has been said about the patient perspective of the perfect infertility physician. In doing my reading on the topic, I read a wonderful joke that has been used to describe the doctor/patient relationship. Angels in heaven were all lined up in the cafeteria waiting to be served dinner. Suddenly, a conspicuous angel appeared wearing a white lab coat and a stethoscrope, who started pushing his way to the front of the line. A new angel turned to an older one and asked, “Why in heaven would an angel act like that?” The senior angel shrugged his shoulders and responded, “Oh, that’s just G-d. Sometimes He likes to play doctor!”
What this joke plays to is the public perception of the physician as G-d. But we often do not discuss the qualities of the perfect patient, except of course the advantages of youth and having infertility as part of your health care package! Using this example of the heavens, an image can also be made of the patient as an angel, who allows herself to be pushed aside and quietly suffers. Interestingly, the word patient comes from the Latin word, “pati”, meaning “to suffer.” In fact, the adjective patient is defined as “bearing pains and trials calmly or without complaint.” The implication is that a patient must suffer silently like an angel.
I was never a silent angel. I was not a perfect patient either. But I gradually learned to be an effective patient. This transformation became about as I gradually figured out that I did not have to be a victim of infertility. I could be a survivor.
I think that the first step in surviving, is that we as patients in infertility have an especially difficult time dismissing the image of “The Doctor as G-d”. After all, especially in the treatment of infertility, the doctor can be seen as the giver of life. And let’s face it, we hang on every word. But to be an effective patient, we must learn to see the doctor that cares for us as a person with special skills instead of a G-d like figure. Only then, when we feel less intimidated, can we communicate more naturally with our doctor.
Effective patients approach infertility as a couple’s problem (when there is a partner!). Even when only one half of the couple has been identified as having the medical condition, it does not mean that both halves are not affected by the disease of infertility. The infertility work up, evaluation, and treatment is handled so much more effectively when both members of the couple participate in the office visits and have an understanding of the tests and procedures they have to go through. A couple who approaches infertility as a unit and shares the involvement in their treatment, is better able to support each other and make better decisions about their treatment and options. Remember when you try to divide an elephant in half, you have a mess, not two small elephants. In order for us to get through this we have to communicate and support each other with this elephant and not go off in different directions.
To be a survivor, we have to learn to ask questions about their treatment. Ask your physician direct questions about treatment shortcomings, alternative tests and therapies. For example, Is age a factor in this success rate? Will it hurt? How much will it hurt? What are the complications? What are the benefits of this treatment over others? It can be helpful to come prepared with your questions written down. To be an effective patient, you need to fully understand your tests and treatments in order to follow directions properly.
Survivors tell the doctor when he or she is failing them. This is probably the hardest thing for patients to do. I think we all have this fantasy, that if our “doctor really, really likes us” and we are “very good patients”, our doctor will try harder to get us pregnant. Communicating to a physician when we are unhappy about how we are being treated or the way our treatment is going can be very intimidating. It may one day happen, while you are in treatment, that you get upset about how certain procedures were handled or how you were handled while going through the procedure.
The emotional pain from such incidences can dig deeply when you are chronically in treatment and feel like so much depends on each cycle. These feelings can ultimately affect the doctor/patient relationship. But your doctor cannot be held responsible without first being made aware of how you feel and then being allowed the opportunity to respond. The doctor/patient relationship in infertility treatment is an intense one. And as in any relationship, both the positive and negative issues that occur need to be discussed and not avoided. Sometimes when we have been in treatment with a physician for an extended period of time without a pregnancy everybody gets frustrated, including the doctor! We can feel as if our doctor does not see us anymore. At times like these it can really help to schedule a sit down consultation when you can be sure your doctor has reviewed your treatment and you have her undivided attention.
Survivors understands that they have to be their own best advocate and seek education on both the medical and emotional aspects of infertility. The fact that you are reading this blog… tells me that you are a survivor. The professionals that take care of us, will probably tell you that infertility patients are probably most medically versed of all patients. However, we may overlook information about the feelings brought on by our infertility. A good way to begin, is to take advantage of all The AFA has to offer… check out our support groups or try reading about the emotional aspects of infertility. Infertility is one of the most stressful life crises you are likely to ever experience.
Infertility can shake the core of your being. But try to remember that while infertility is stressful, the feelings of stress are normal and expected, but not permanent. I promise you, you will not feel the way you feel today, forever. However, while we are in treatment and daily dealing with the pain of infertility, we need to find ways to cope and come out of this experience a whole person.
Again, guidance and understanding can be found through The AFA. Check out the new message boards. Participate in a weekly chat...attend a support group. Trying yoga, meditation, and exercise can also be helpful. I know it’s hard, and I couldn’t always do it, but try not to give up your life while you are going through this. Try not to let the stress of infertility isolate you. If you can find an infertility buddy through your program, or The AFA, this can be a life saver. Who else will listen to how many follicles you produced and the condition of uterine lining for hours on end?
The patient who is a survivor who have learned to take an active role in the medical team, interpret success rates, is an educated consumer, gets emotional support in order to gain insight and encouragement for our personal choices, and sometimes, the effective patient has to know when it is time to stop being a patient.
Take one step towards leaving being a victim behind. Try being an active participant in the treatment process rather than a passive recipient of medical intervention. Make contingency plans with your doctor and spouse, what will we do if this treatment option or adoption plan does not work out. Remember, patients who are able to see the physician as a person, not a deity, don’t have to act like angels sitting silently in the wings.
It is has been said that the measure of success is how we handle the journey rather than its actual outcome. I know what you want. I wish for all of you the same thing you are wishing for yourselves - a healthy baby.
But try to not let the achievement of this goal be the only measure of your success. While you are riding the infertility roller coaster, try taking control of the moment and feel the success in just that. .
Through this experience, that you never wanted; through the tears and frustration, you and your partner will grow in a positive way. Maybe in a way you can’t even see yet. And your love and strength for each other will tighten like a vine on a tree.
I believe in your strength and your courage. I have sat where you are sitting today. I have felt like the floor was opening beneath my feet, and my biggest accomplishment for the moment was that I was breathing. You will come through this. And you will write your own individual “happily ever after”. I hold out my hand to you and wish you a short journey.
Until Tomorrow,
Pamela
Categories
Fertility •
Fertility Preservation •
Infertility
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The New Kid on The Block…
October 17, 2007 - Wednesday
Posted by Pamela
So...I left ASRM early to go meet with Trojan...to hear an update on their Evolve Campaign. According to the information that Trojan distributed to us...there are 750,000 unintended teenage pregnancies...40% of which end in abortion...and 19 million sexually transmitted infections (which is one of the biggest causes of infertility in the country). Yet....among single sexually active Americans between the ages of 18 and 54..they only use condoms in about 25% of their sexual encounters.
It was so interesting for me coming from the meeting at The American Society of Reproductive Meeting...where a video of me was used in a montage of clips during opening ceremonies...and as the song goes..."everyone knows my name”...to walking into a group where no one had ever heard of us...and yet everyone knew each other. It was a very unfamiliar feeling for me.
Oh yes...The AFA is the new kid on the block when it come to the sex and reproductive health community!
And we have a campaign to talk about...."Let’s Talk About Sex”..
And I found myself sitting with representatives from organizations like National Planned Parenthood...and The Guttmacher Institute...and with some folks that have clearly made an impact in this part of the reproductive health community...but that I did not know.
Yes...we are late coming into this conversation...but our message is an important one...and it is one where very little emphasis is given...yet when we met with parents of children...it was a message that parents felt really comfortable giving to their kids...and it was a message that they felt was really important...that STI’s can render you infertile...and the use of condoms can protect you in protecting your fertility...and unplanned pregnancy..so that when you are ready to have a child...you will be able to time it...and be healthy.
And so I sat around the table...the new kid on the block...and you know me...eventually our messages will be heard...because all of the messages are important...and you never know which message is going to be the message that ‘cracks the code’ on whether a condom is used or not.
Until Later,
Pamela
Categories
Fertility •
Fertility Preservation •
Infertility •
Sexual Health
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