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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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The Season of Celebration
October 30, 2007 - Tuesday
Posted by Pamela
The holidays are upon us. They came marching in for some of us in September with the Jewish holidays..and will continue to dance around us through January 1st.
Today is Halloween...and those cute little trick or treaters ringing your door bell can be bitter sweet.
Yes...the holidays can be tough stuff when you are trying to conceive. After all, they are about celebration and we may not feel like celebrating. Holiday’s can be about giving thanks and we may not be feeling very thankful at the moment. Holidays are markers of time and remind us that once again we are not sharing these potentially joyous celebrations with a little one or a swelling belly. Holidays are about gatherings and seeing family. Our extended families may be growing around us, and we may feel like the flawed couple in the midst of toddlers and pregnancy announcements. Our families may be looking for “updates” if we have been open about our struggles, or may ask subtle inquiries about our plans for family building. Holidays that have the expectations of being filled with joy, can for those of us experiencing infertility, be a conundrum. One big problem.
How do you cope? There are many theories and suggestions by mental health experts who specialize in caring for the emotional health of the couple experiencing infertility. Everyone acknowledges that this is a toughie.
Suggestions often center around taking yourself into as many “kid free” zones as possible. Try to attend adult only parties. Permission is given for you to skip family functions or situations that are just too painful, explaining to family and friends that you just can’t handle it right now. Suggestions are given for gift giving, such as using catalogs instead of dealing with stores that could be filled with painful reminders and situations. Coming to celebrations late after the part of the tradition that causes you the most pain is over, or leaving early before they begin.
These can be good suggestions, and if they fit with your coping style, you may want to test one or more of them out and see if they ease the sadness. I also need to bring into the picture another point of view.
Reproductive difficulties or infertility is a robber. A thief that is trying to steal your dreams of a family. A burglar of joy. If you loved decorating your door with orange pumpkins and spooky witches...should you allow infertility to take that joy away too?
Perhaps, thought should be given into taking charge of the holidays the way you are encouraged to take charge of your infertility!
Maybe you should be the one to host and coordinate Thanksgiving dinner. You tell everyone what to bring. When to come. When to go! Being a host and hostess takes effort and planning. If you enjoy cooking, you can experiment with new recipes and really out do yourself! You can pick the music and your favorite traditions. You are in charge of the guest list. You might want to include some friends that are also experiencing infertility. You and your spouse will be very busy during the festivities making sure the soup is just right and you will be the boss, not the guest which puts you in a different role for the evening. One of my friends who has experienced infertility told me that she always made Mother’s Day! She was able to be in control, a part of a family day, and have an important role that she was able to receive praise and satisfaction for. Infertility is isolating enough, and your family want to see you and include you.
Being the hostess is a good way to be a important part of the celebration and having a focus other than your private pain.
Another way to take charge of the holidays is to volunteer. Please don’t groan! But maybe you REALLY REALLY can’t stand seeing your pregnant cousin this year, but you want to be with people and enjoy the holidays. Volunteering to serve dinner at a soup kitchen or visiting the lonely at nursing homes or hospitals can really lift the spirits. You can be a part of the holiday season and do a good deed by helping people who are in a different kind of pain. Sometimes, as awful as it sounds, seeing and helping people who for example, don’t have enough food to eat, may help you feel blessed with all that is good with your life.
Take charge of the holidays and hopefully next year, someone else will be in charge!
Trick or Treat!
Pamela
Categories
Infertility •
Reproductive Technologies
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In The Stories of Our Times….
October 29, 2007 - Monday
Posted by Pamela
Recently I was looking through a book of bible stories, when I came across the story of Hannah, and I realized I was reading a story about infertility. The story of Hannah is from the book of Samuel. Not only was she childless for many years, but she was taunted by her more fertile co-wife Peninnah. Her husband tried to comfort her, as husbands today try to comfort their wives during infertility, and asked Hannah, “Why are you crying and why aren’t you eating? Am I not more devoted to you than ten sons?” But Hannah could find no solace.
Hannah prayed her heart. She cried out before the holy one, “of all the hosts and hosts that Thou hast created in your world, is it so hard in your eyes to give me one son?” A parable was offered in the text: “To what is this matter like? To a king who made a feast for his servants when a poor man came and stood by the door and said to him, give me a bite, and no one took any notice of him, so he forced his way into the presence of the king and said to him, Your Majesty, out of all the feast which thou hast made, is it so hard in thine eyes to give me one bite?” Shortly afterward, remembers Hannah and they conceive a child, a baby boy they called Samuel.
I continued to look through my book of bible stories, and found several dealing with the infertile. In the story of Jacob and Rachel, Rachel was unable to conceive a child so she tells Jacob “Here, take my maid Bilhah. Consort with her, that she may bear on my knees and that through her I too may have children. When Bilhah gave birth, Rachel said, “God has vindicated me, indeed he has heeded my plea and given me a son.” Today, we call this traditional surrogacy.
Isaac and Rebecca also had some difficulties. In the language of the Torah, it appears they had a male factor problem. Isaac pleaded with the Lord in the presence of his wife rather than for his wife, and then God answered him, not his wife. Rebecca gave birth to twins. Isaac was sixty years old when his wife gave birth, and he had no other children.
And Samson’s mother was childless when an angel of God appeared to her and told her she would conceive. You remember what a mighty warrior Samson was, until they cut his hair.
I also found a reference for adoption in the bible. Michal, the daughter of Saul could have no children. Michal had a married sister. The bible tells of the five sons born to her sister but raised by Michal and called by her name. This scripture teaches that anyone who raises a child in their home considers him as if he gave birth to him.
In the story of Abraham and Sarah, infertility was a very real issue. Sarah finally conceives when she is ninety years old. I believe that Sarah may have been the first post-menopausal women to give birth! Hello media! What was old is new again! And I promised my husband I wouldn’t go into my theories on the Virgin Mary and the conception of Jesus.
So here I am with my mind filled with stories about infertility! What about fairy tales? Yes, there too. Tom Thumb was so wanted by his parents that they wished if they could only have a child, any child, they wouldn’t care if it was as big as their thumb! And in the story of sleeping beauty, the King and Queen were childless for many years, when, with great joy, a daughter was born to them. They had a great party but forgot to invite one of the fairies. Then there is the story Rapunzel of the long golden hair. Her mother thought she would lose the baby if she did not have rhubarb leaves to eat. The husband went into the witch’s garden to get the leaves. We all know how that story ends. And then I was forced into watching a old video with my son and his friends last summer of “The Flintstones”, and there was Barney and Betty Rubble worrying about their home study so they could adopt Bam-Bam.
I am sure that if I really made a study of this, I would find stories of infertility and long awaited children in every culture and religion. From the wives tales to the children’s stories, having a child seems to be one of the central themes of humankind. The reason is obvious, without children we do not continue.
I know what brings many of you to The AFA. You are here looking for answers. Gathering information, networking about programs, doctors, and adoption resources. You are also praying for a miracle, just like our biblical counterparts, but you may turn to medicine to help bring about that miracle. You may find that your miracle lies at the end of an adoption journey or alternative family building options.
We are the people creating today’s stories and today’s resolutions for ourselves....as those that have come before you.
Keeping you in my heart....
Until Tomorrow,
Pamela
Categories
Adoption •
Infertility
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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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