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Friday, December 17, 2010

Let's Talk About The Birds & The Bees

I finally did it, I submitted the sex & bleeding disorders blog post that I drafted long ago! I had to tone it down quite a bit -- if you know me IRL that you guys know how much more I could have explored this topic in detail -- but I'm very happy with how the post turned out. I edited it quite a bit before I submitted -- and omitted a lot of the "super taboo" content -- but I still felt like my orginal submission sounded a bit...strained. I had to choose my words wisely because I didn't want to make the post too offensive or taboo. Thank goodness for awesome editors. I'm happy to report that I haven't got any negative feedback from this post. ;-)

Anyhoo, here it is. Enjoy!

Last spring I received my sex educator certification from San Francisco Sex Information (SFSI), a nonprofit organization that provides free, confidential, nonjudgmental sex information. SFSI is the only organization of its kind and answers questions from all around the world via switchboard and e-mail.

The organization provides invaluable information and appropriate referrals to people who may be too embarrassed to ask healthcare professionals or cannot locate legitimate information on the almighty Internet. SFSI’s training program covers reproduction, birth control, safer sex practices, HIV, STDs, gender identity and sexual identity. I am proud to be a SFSI-trained sex educator.

For a lot of people, the subject of sex is taboo. I understand why, but I believe our society should make a greater effort to provide comprehensive, nonjudgmental sex information to those who want it. Sure, the public schools provide some sex education, but what we learn about sex, intimacy and relationships also comes from home. More often than not, we come from a home environment that inhibits discussing sex and intimacy. (Well, at least I did.)

I’m not saying all parents should feel obligated to educate their children about sex, but at the very least they should have the resources to direct them to good information, should questions come up.

Sex and Bleeding Disorders

When I was in SFSI’s program, the training staff conducted a session on sex and disability. There was no mention of bleeding disorders, but it got me thinking about how I would probably have to modify my “birds and bees” talk with Niki. If and when Niki decides she wants to talk with me about sex, I want to be prepared. John thought I was nuts—he’s still hoping both of our daughters will become nuns—but I started researching information on sex and bleeding disorders while I was a trainee.

Unfortunately, I quickly learned there is very little information available about sex and bleeding disorders. I was surprised that there was hardly any condition-specific information on sexual issues related to women with bleeding disorders. And, I was even more disappointed to find absolutely no information on sexual intimacy for gay, lesbian and transgendered members of our community!

As a sex educator and member of the bleeding disorders community, I was concerned. As a mother, I was concerned! Not about Niki’s sex life—which, let’s face it, is many, many years away—but it made me wonder how members of our community learned about how their bleeding disorder affects their sexual relationships. Relationships, communication and sexual intimacy are already difficult in a “normal” situation. I imagine that throwing a bleeding disorder into the mix only exacerbates potential issues that could come up. Did they have to learn things the hard way?

Sex Info Should Come From Reputable Sources

Knowledge is power, and I didn’t have that when I was growing up. Everything I learned about sex came from school, peers and, unfortunately, teenage naiveté and experimentation. (It’s a darn good thing that John ended up being a good guy!) I don’t want Niki—or any of my children, for that matter—to be like I was. These days, everyone goes to Google for information, but there is so much sex information on the Internet that is inaccurate or serving some sort of agenda!

It is especially important to me that Niki be as informed as possible about how her condition can affect her sexual intimacy. As awesome as her female hematologist is, I don’t know if Niki will feel comfortable asking her about “embarrassing sex stuff” when that time comes. I’m equipped with enough knowledge to talk with Niki about dealing with menorrhagia when she has her period, but there are so many other things I want her to be prepared for. I read about one woman’s account of the excessive bleeding that occurred on her wedding night. And I hadn’t even thought about that type of bleeding being an issue!

I was pleased to learn that this year’s Annual Meeting was having a session on women with bleeding disorders and intimacy. At that session I heard for the first time that bleeding can be an issue even after first intercourse. If I could split myself in two, I would have attended the men’s intimacy session, too. I’m sure there was a lot I could have learned there as well.

The lack of sex information available to both male and female members of our community worries me. The little information that I have seen seems to be geared toward the mainstream idea that everyone is heterosexual or married. I wish I knew why so little information is available on sex and bleeding disorders. Maybe people are too embarrassed to ask for it. Or perhaps they are asking their doctors about it, but no one has made a collaborative effort to put this information out there for mass consumption.

Medical students don’t receive a great deal of formal instruction on human sexuality unless they specialize in it. So, we cannot rely solely on health professionals to educate our community, either.

I hope I’m not the only HemoParent who feels this way. The fact is, it’s up to our community to realize this issue is important enough to discuss.

Saturday, December 11, 2010


In case you didn't already know, John and I were supposed to get married today. Yep, I was supposed to have my big ol' Catholic wedding, but instead, I got pre-martially knocked up again.

All three of my sisters we set to get married in 2011 & 2012 which is why John and I decided to get married at the last minute. (Our culture believes that it's bad for siblings to get married in the same year.) We started planning in late May, but quickly cancelled in early July after we discovered that Noie was on her way. I decided that it would NOT be a good look to waddle down the aisle while 8 months preggers.

But, believe it or not, planning our would-be wedding was sooooo easy. We've been engaged since John proposed when Kevin was 8 months old. Needless to say,  I've had tons of time fantasize about our wedding day. We both love the winter so December seemed like a natural choice. Aside from that, it was the 12th month of our 12th year which was perfect. John picked the date and venue, but I did everything else. We planned on using the same photographer, DJ, and videographer from Niki's party. I even found the perfect dress! (Thank goodness I didn't order it or I would have been screwed.)

I'm a little sad today. I wouldn't trade my "Snowy Noie" for THE WORLD, but damn it, I should be in a wedding dress today -- not sweats and a huge-ass sweater!!! Today I was supposed to officially become Mrs. John  (okay, Rodolfo) de Leon! 12.11.10 was supposed to be the day that I stopped being a "sinner," and finally have my union with John recognized by God. It's very important to us to have His sacramental blessing. That's why we've held off on having a civil ceremony all these years.

Everything about our wedding had a meaning. Instead, there are a LOT of "Nos" happening today.

1. No vintage winter wonderland wedding at the Galleria. The room was going to be filled with Tiffany blue, crimson red (John's signature color in high school), crystal trees, twinkling lights, bling, and downy feathers.
2. No large wedding party - a groomsman & bridesmaid for each year we've been together.
3. No flocked Christmas tree for our guests to hang handmade ornaments on. (I was going to have an ornament making table so our guests could make an ornament to take home and one for us to keep -- to carry on our den's holiday tradition.)
4. No photobooth & scrapbook table.
5. No Japanese cuisine or sushi bar. (To pay homage to our first date.)
6. No yummy warm winter treats & drink bar.
7. No snowy honeymoon with my honey.
8. And most importantly of all, NO blessing from God, at St. Dominic's, by the Father who gave Ethan his final sacrament.

Today, we're making gingerbread houses, decorating ornaments, and going to the parol parade. It's not my wedding day, but I wouldn't trade today's memories for the world. :)

Sunday, December 5, 2010

My Sickly Self

My 12/1/10 post for Don't forget to check out their articles! Great stuff for all you hemos.

I landed myself a trip to the emergency room a few days before we flew to the National Hemophilia Foundation’s (NHF’s) Annual Meeting in New Orleans, November 11–13. I had a severe allergic reaction that was bad enough for John to call 911. Oh, lucky me! I’m OK now, and the baby is OK, too, but I almost thought I wouldn’t be able to attend the conference. My allergist was leery about allowing me to fly after the scare, and my ultra-conservative ob/gyn strongly advised against the trip. But, I’m stubborn, and I went anyway. And actually, I’m glad I did—illness or not. I had a wonderful time despite feeling under the weather, and I wouldn’t have traded the benefits of those four days for the world.

I’m able to somewhat write nonchalantly about this experience because, unfortunately, I’ve become used to my condition. You see, I’ve had several brushes with death before. For the past eight years I’ve suffered from idiopathic anaphylaxis, along with severe asthma.

What happened to me the Saturday before the Annual Meeting wasn’t a first-time occurrence, my friends. I’ve been unconscious on a ventilator before, I suffered a right lung collapse in 2006, and I’ve had my fair share of ICU admits. Niki and I can both equally call the emergency room our second home. The staff knows us well! I’ve had thousands of dollars of testing, but specialists haven’t been able to figure out what causes these anaphylactic reactions. So, I carry an EpiPen, and I know how to use it!

I often try to downplay my health issues, but honestly, I constantly feel like I’m walking on eggshells. I never know when or how hard an episode will hit. It initially was difficult for me to emotionally deal with the boys watching me be sick. They’ve seen me unconscious and foaming at the mouth. I’ve even seen the panic in their eyes on the rare occasions that I stayed conscious long enough for the paramedics to arrive. It all leaves an uneasiness in me that I can’t even begin to describe. I can only hope the boys won’t be affected by the things they’ve seen me go through.

Hanging On to Our Good Insurance

When Niki was born, the reality of our family’s need for good insurance really kicked in. And that only added to my worries! If I lose my insurance benefits because I’ve fallen ill, or—God forbid—if I die from one of these episodes, then it will affect John and the kids not only emotionally, but also financially. I know this all sounds melodramatic, but this is a reality for our family. I’m the main insurance provider, and I’m not exactly the healthiest person in the world. John has excellent insurance for healthy people, but not for people who have chronic conditions. Whenever I have episodes like this, my fears come back again, and “what-ifs” occupy my thoughts. Having a sense of humor helps me be less cynical about living with my condition. I learned how to pack an “emotional survival kit” for my health issues years ago. Nevertheless, I’m a mom: It’s in my nature to worry!

I wish I could say our family has a back-up plan for the “what-ifs,” but we don’t. All I can do is have faith that things will work out—that I will stay healthy so my family always has access to the best insurance possible. I adhere to my medication schedule, but I’m also notorious with my family and friends for pushing myself too hard. The last time John had to call 911 for one of my reactions was when I served as team captain for our local chapter’s inaugural Hemophilia Walk on World Hemophilia Day 2010. I was running around all over the place that day, and it bit me in the you-know-what.

I was lucky that I didn’t get admitted or intubated that time around, but I was inches from it. That was the first time Niki saw me have one of my reactions, and she seemed perplexed at all the commotion that surrounded me. She was awake for this last one, and I didn’t like it. She had that same confused look on her face.

Fighting Frailty

Now, I don’t know if this is necessarily a good thing, but I like the challenge. I hate being sick in bed because I feel totally unproductive. I try to avoid treating myself like I’m emotionally frail from all of this, because I fear actually becoming frail. I’m a mommy, caregiver, full-time employee and wanna-be “superwoman.”

I don’t call in sick when I am sick, because I have to be ever-conscious about the Family and Medical Leave Act hours Niki and I must share. Truth be told, I don’t take it easy as often as I should. But, if I lay around and wallowed in my sorrows, what example would I be setting for my children? Rather, I believe that if I emit a false sense of strength, then eventually, I become what I envision myself to be.

There isn’t anything I can do to help my condition, but I have total control of how I perceive it. I know my physical limits, but I also try to slowly stretch my limits so I build some endurance. Mind over matter, right? (Well…most of the time, anyway.)

I suppose I want to raise Niki, and the rest of my children, to have the same philosophy as well. Think strong and you will be strong! After all, emotional strength is all you’ve got left when the world around you comes crashing down.