It amazes me sometimes how much I feel like I tried to find various avenues of support during treatment and I keep on learning of more organizations/sites everyday. I wanted to start putting together a list of various places you can go for support. Some provide medical terms sheets and info on treatment options, some provide financial help and some are peer support sources. Please feel free to comment with additional sites you know of that I might have missed. There is no particular order to what's listed - just how they came to mind.
www.resolve.org - National Infertility Org for the US - patient fact sheets, support groups, teleseminars, membership with magazine.
www.atime.org - Jewish org based out of New York - most programing happens there, medical/halacha support, membership with magazine (or you could download online), some cities have local chapters that might offer other levels of support.
www.soulsisters.com and www.soulsisters.net - for PCOS info site and .net is a forum
www.conceiveonline.com - blogs, articles, resources, forums
www.cadefoundation.org - family building grants of up to $10K
www.boneiolam.org - Jewish org based in NY that provides funding grants to couples worldwide experiencing infertility.
www.puahonline.org - The Puah Institute, based in Israel, provides counseling on infertility from a halachick perspective. Their staff includes trained medical and rabbinical personal. They also will coordinate supervision at fertility clinics. They provide support in english, french, spanish and hebrew.
www.chana.org.uk - Jewish organization that provides counseling, helpline, medical advice/support, lectures, peer support and books and tapes.
There are also tons of other people blogging out there - google search or find one and it may lead you to many more.
Again - please feel free to add any more places you can think of in the comments.
Monday, August 31, 2009
Sunday, June 28, 2009
Resolve Advocacy Day
Last Thursday I had the privilege to volunteer for Resolve's day of Advocacy, to lobby on the hill for infertility related issues. Besides being a part of a great cause, it was an amazing experience to find myself among a group of women who have fought so hard to build a family. The stories and passion these women shared with each other and with the various legislative aides and representatives we met with was awe-inspiring.
Our mission was 3-pronged. Get representatives and senators to sign on to the Family Building Act of 2009, gain a voice for infertility as part of the health care reform conversations and a $250,000 appropriation for the CDC to create a public health and infertility action plan. I had the opportunity to "sell" these ideas to 4 different offices - Senator Cardin (MD), Senator Spector (PA), Senator Burr (NC) and Representative Van Hollen (MD). Though I was officially representing Maryland, as we had such a large contingency many of us participated in various other meetings from different states to support our peers. Specifically for me PA and NC each only had one constituent who was able to come to DC for the day so I was there to be another voice for them and ensure they didn't need to walk into a room alone.
A little bit more background for those that are interested. Currently, only 15 states have some level of regulation on health insurance that requires levels of infertility coverage. However, many people are unable to tap into their state mandates, given the crazy specific language and criteria. For example, one woman I met on Thursday told the story of her spouse he has a rare genetic condition that he has no sperm - no surgery/extraction can help there is nothing there. However, Maryland's mandate will only cover infertility procedures when the sperm of the male and the eggs of the woman who are married to each other are used. They are getting no insurance help and must come up with $25,000 to try even once for a successful pregnancy. Alternatively, many women with fallopian tube issues have surgeries to remove scar tissue or repair tubal issues. While no affective link between these surgeries and increased fertility have been demonstrated, these $30k plus surgeries are almost always covered by insurance. However, wouldn't the money be more effectively spent on 2-3 IVF cycles that have over a 70% success rate at that point? Even with the strict guidelines of some of these state mandates, states with infertility coverage have shown decreased overall health care costs than other states. This is partially attributable to the fact that additional fertility coverage usually leads to more appropriate medical conditions, including single as opposed to multiple births. Less medical procedures and medications are required for a successful pregnancy, less costs are incurred during the pregnancy and delivery and there are less long term costs on the system. Did you know a premature baby is automatically put on medicaid? One woman shared that the 21 days her twins spent in the NICU cost over $100K - not to her pocket though - to the state medical system. Additionally, uncontrolled procedures, like IUIs, as opposed to IVF have a much greater incidence of multiple births, yet cost up to $10K less, so without insurance coverage many people try to go that route.
The Family Building Act proposes to close some of these loopholes by creating a federal mandate that any insurance that provides OB/GYN care provides full infertility coverage. Let the appropriate medical decisions be made between the doctor and the patient and not based on finances. Write to your representative and senator and ask them to support the Family Building Act of 2009.
Enough ranting for the moment, more to come later.
Our mission was 3-pronged. Get representatives and senators to sign on to the Family Building Act of 2009, gain a voice for infertility as part of the health care reform conversations and a $250,000 appropriation for the CDC to create a public health and infertility action plan. I had the opportunity to "sell" these ideas to 4 different offices - Senator Cardin (MD), Senator Spector (PA), Senator Burr (NC) and Representative Van Hollen (MD). Though I was officially representing Maryland, as we had such a large contingency many of us participated in various other meetings from different states to support our peers. Specifically for me PA and NC each only had one constituent who was able to come to DC for the day so I was there to be another voice for them and ensure they didn't need to walk into a room alone.
A little bit more background for those that are interested. Currently, only 15 states have some level of regulation on health insurance that requires levels of infertility coverage. However, many people are unable to tap into their state mandates, given the crazy specific language and criteria. For example, one woman I met on Thursday told the story of her spouse he has a rare genetic condition that he has no sperm - no surgery/extraction can help there is nothing there. However, Maryland's mandate will only cover infertility procedures when the sperm of the male and the eggs of the woman who are married to each other are used. They are getting no insurance help and must come up with $25,000 to try even once for a successful pregnancy. Alternatively, many women with fallopian tube issues have surgeries to remove scar tissue or repair tubal issues. While no affective link between these surgeries and increased fertility have been demonstrated, these $30k plus surgeries are almost always covered by insurance. However, wouldn't the money be more effectively spent on 2-3 IVF cycles that have over a 70% success rate at that point? Even with the strict guidelines of some of these state mandates, states with infertility coverage have shown decreased overall health care costs than other states. This is partially attributable to the fact that additional fertility coverage usually leads to more appropriate medical conditions, including single as opposed to multiple births. Less medical procedures and medications are required for a successful pregnancy, less costs are incurred during the pregnancy and delivery and there are less long term costs on the system. Did you know a premature baby is automatically put on medicaid? One woman shared that the 21 days her twins spent in the NICU cost over $100K - not to her pocket though - to the state medical system. Additionally, uncontrolled procedures, like IUIs, as opposed to IVF have a much greater incidence of multiple births, yet cost up to $10K less, so without insurance coverage many people try to go that route.
The Family Building Act proposes to close some of these loopholes by creating a federal mandate that any insurance that provides OB/GYN care provides full infertility coverage. Let the appropriate medical decisions be made between the doctor and the patient and not based on finances. Write to your representative and senator and ask them to support the Family Building Act of 2009.
Enough ranting for the moment, more to come later.
In response to a previous comment
My apologizes for a delayed response - I need to figure out how to have the site alert me if there is a comment. Second - I wish you and your husband success on your family building journey.
To your question - personally, I would be hesitant approaching someone that I wasn't close with and sure that they were dealing with the same issue I was. There are many reasons why people might not be having children - economics, education, job issues or medical. Without knowing which you run the risk of potentially offending the person. My two suggestions would be if you have a friend who is closer to this person maybe they could act as an intermediary for you. Alternatively, if you are comfortable being open just start talking about it in front of anyone and people will find you. I can't tell you how many people have come my way even indirectly because I made a comment to someone else. And I'm talking along the lines of - we're going through infertility treatment, I had to get up so early this morning for monitoring for treatment, we're working on building a family but need some medical help - anything you feel comfortable with.
Alternatively - find a support group through your clinic or Resolve - they might not get the community you are coming from but they get what you are going through. Ask the mikvah attendant - when I first wanted someone to talk with I called up the woman who runs the local mikvah and she put me in touch with someone. Join an online support group - ivillage, soulsisters for pcos, conceiveonline, atime, etc.
I hope some of this is helpful to you and I am more than happy to talk with you via email or phone - you can reach me at irbranda at yahoo.com.
Good luck on your journey.
To your question - personally, I would be hesitant approaching someone that I wasn't close with and sure that they were dealing with the same issue I was. There are many reasons why people might not be having children - economics, education, job issues or medical. Without knowing which you run the risk of potentially offending the person. My two suggestions would be if you have a friend who is closer to this person maybe they could act as an intermediary for you. Alternatively, if you are comfortable being open just start talking about it in front of anyone and people will find you. I can't tell you how many people have come my way even indirectly because I made a comment to someone else. And I'm talking along the lines of - we're going through infertility treatment, I had to get up so early this morning for monitoring for treatment, we're working on building a family but need some medical help - anything you feel comfortable with.
Alternatively - find a support group through your clinic or Resolve - they might not get the community you are coming from but they get what you are going through. Ask the mikvah attendant - when I first wanted someone to talk with I called up the woman who runs the local mikvah and she put me in touch with someone. Join an online support group - ivillage, soulsisters for pcos, conceiveonline, atime, etc.
I hope some of this is helpful to you and I am more than happy to talk with you via email or phone - you can reach me at irbranda at yahoo.com.
Good luck on your journey.
Thursday, May 28, 2009
Red or Green
Don't you sometimes wish your belly button was actually a light? Ok maybe I'm just crazy that way. I decided though that it would be really great if your belly button would let you know stuff about what's going on inside these crazy bodies of ours. Red - nothing happening - no ovulating or baby - depending on the time of the month. Green - get going you have some baby making to do or need to see a doctor because there is already a baby inside. None of this peeing on a stick every day to check fertility levels, or spitting on a "fern" reader. No waiting at the end, just instant answers. So I shared this idea with Aaron and he had one issue. Though red usually is negative and green is positive when you think of spaces red is usually occupied and green is vacant. So would the green light mean there is a baby or that the womb is vacant? So now people would get confused and start second guessing their belly button light and that's not helpful for anyone. So I guess we just need to put up with the system we have and come up with another use for the belly button. Any suggestions?
Sunday, May 10, 2009
Mother's Day Reflections
As I "celebrate" my second monther's day, I must take a moment to pause for everyone out their wishing to be first time, second, third or more times around mothers. As a society I think we are becoming more aware, and maybe even sensitive, to primary infertility. However, I think there is still a large lack of awareness for secondary infertility. Many people are fortunate to have 1, maybe 2, children without any medical intervention, and then for a variety of reasons might no longer be able to conceive on their own. Many people know they can't conceive on their own and will need medical intervention for anytime they want children. And here is the kicker - no one thinks you have an issue - we are quick to judge if someone doesn't have any children that maybe they are having issues - but we don't think about it after they have one. For us we must deal with the same struggles we dealt with the first time around - when to go to the doctor, what to tell people, where can we save a little more money from to make this work? I am ecstatic to be able to hug my daughter and celebrate this hallmark day with her. However, in the back of my mind there is always that thought will mother's day be more than 1 for me sometime soon?
To all the mother's out there - whether you got to this point naturally or with medical help - may you always see the joy and love your child/ren bring you. For those waiting to be mothers - I hope your prays are answered speedily and by next mother's day you will be holding a precious bundle in your hands.
To all the mother's out there - whether you got to this point naturally or with medical help - may you always see the joy and love your child/ren bring you. For those waiting to be mothers - I hope your prays are answered speedily and by next mother's day you will be holding a precious bundle in your hands.
Monday, April 20, 2009
Infertility Vent
Can I just vent for a moment...Why do people feel the need to consciously or not throw infertility in people's faces? I ran into a high school classmate in Chicago when I was in the park with Adira. They asked if this was my first child, to which the answer is yes for any of you not keeping track. She then proceeded to ask me how many years I've been married. What is the benefit of that question? I answer 5 to which you can then think I'm not "jewish" enough for waiting that long to have a child or maybe I wasn't waiting and you just reminded me of that fact (while you walk around with your 4 year old). Seriously, what did that question accomplish?
If we want to put such a value on people having children, and hopefully raising them to be inspiring members of the jewish community, we need to support that ideal not push it down. Those of us who have dealt with, and continue to deal with, primary or secondary infertility put a tremendous value on having children. We wake up at ungodly hours of the morning to get to our doctor's appointments before going into work. We allow are arms to become pin cushions. We learn on oranges how to inject ourselves with drugs. We spend thousands of dollars before having the opportunity to pay for day school tuition. Please don't look down on me for only having one child - I'd happily have more. Please don't calculate how long it takes me to have a child - I know the math all too well. Just say something nice about my daughter and let me be proud of the fact that she is sharing the world with you and your family.
If we want to put such a value on people having children, and hopefully raising them to be inspiring members of the jewish community, we need to support that ideal not push it down. Those of us who have dealt with, and continue to deal with, primary or secondary infertility put a tremendous value on having children. We wake up at ungodly hours of the morning to get to our doctor's appointments before going into work. We allow are arms to become pin cushions. We learn on oranges how to inject ourselves with drugs. We spend thousands of dollars before having the opportunity to pay for day school tuition. Please don't look down on me for only having one child - I'd happily have more. Please don't calculate how long it takes me to have a child - I know the math all too well. Just say something nice about my daughter and let me be proud of the fact that she is sharing the world with you and your family.
Thursday, January 29, 2009
Struggle of the Torah almost Woman
Another Poem written by Chana Yehudis Zahav (c) 2009
Written 6/6/2005
I have a growing hidden pain,
In the place where an embryo should be.
I have a yearning deep inside
That longs to be set free.
Free from longing and loneliness,
Free from looks and stares,
Free from other peoples crying babies,
And free from my own despair.
I have a growing hidden love,
For a child that is not yet conceived.
And though I know there is always hope,
Why is it so hard, just about this, to believe?
I have a growing hidden guilt
That this is in every way my fault.
For if this is what Hashem wants of us,
What does that say about my worth?
I have a firm belief that G-d
is doing this for the best of us all.
And so when all is said and done,
I have become a living, breathing, prayer.
Written 6/6/2005
I have a growing hidden pain,
In the place where an embryo should be.
I have a yearning deep inside
That longs to be set free.
Free from longing and loneliness,
Free from looks and stares,
Free from other peoples crying babies,
And free from my own despair.
I have a growing hidden love,
For a child that is not yet conceived.
And though I know there is always hope,
Why is it so hard, just about this, to believe?
I have a growing hidden guilt
That this is in every way my fault.
For if this is what Hashem wants of us,
What does that say about my worth?
I have a firm belief that G-d
is doing this for the best of us all.
And so when all is said and done,
I have become a living, breathing, prayer.
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