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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!

http://hemaware.org/blogs/diary-hemomom/let%E2%80%99s-talk-about-birds-and-bees

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

12.11.10

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 HemAware.org. Don't forget to check out their articles! Great stuff for all you hemos.

http://hemaware.org/blogs/diary-hemomom/my-sickly-self

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.

Thursday, November 25, 2010

Thanksgiving

Happy Thanksgiving, Bloggy Friends!

The year has been filled with highs and lows, but through it all, we've persevered. I'm thankful that God has given our family the strength to face adversity with our heads held high and our spirits unfaltered.

Thanksgiving should be a time for reflection -- not only for what we're thankful for, but for the things we aren't typically thankful for. Step back and analyze your most troubled moments and darkest hours because there is something to be grateful about them, too. Take this day to reflect on how wonderful life is.

I feel dark today, and every holiday, because Ethan isn't here to join us. So today, I'm willing myself to be thankful for his passing. Because if he were here today, I probably wouldn't be as appreciative of what I have in front of me.

Appreciate each and every moment -- the good and the bad.

Victory for Women at the Annual Meeting

My HemAware post for 11/23/10. :) They posted this a day early because of the Thanksgiving Holiday.

http://hemaware.org/blogs/diary-hemomom/victory-women-annual-meeting


Please excuse my blog hiatus. I was preoccupied with attending the National Hemophilia Foundation’s (NHF’s)Annual Meeting in New Orleans, November 11–13, so I fell a bit behind with my writing. There is so much I want to write about, but it’s difficult to condense the entire experience into a single post! As a matter of fact, it may take a few posts for me to write everything I want to about our experience at this year’s Annual Meeting because, yes, I was that inspired!
We were quite fortunate that last year's meeting (the first year we attended) was on our very own stomping grounds in San Francisco, so we knew where to find cheap parking and good eats. Although I was very excited about going to NOLA, venturing into a different city made me a bit nervous, too. I don’t travel often—my last trip on an airplane was in 2005—so flying makes me nervous. John thinks my fear of flying is silly, considering that I went skydiving earlier this year, but I can’t help it. I've never flown with a toddler or in my third trimester of pregnancy, either, so that only added to my apprehension. And need I mention the potential airport security fiascos associated with all the “medical contraband” Niki and I had to bring on our trip? To say I was nervous about our trek to this year’s Annual Meeting is an understatement!


The good news is that passing through airport security was surprisingly easy, even though I had an entire carry-on bag designated as a “mobile hematology and asthma/allergy care unit.” Even though I technically flew against medical advice from my ob-gyn—I’ll save that story for another post—flying while pregnant wasn’t so bad, either. And as for Niki? Well, let's just say her “adorable little girl” card got revoked a few times on the flights there and back. She wailed like a banshee when altitude changes made her ears pop, but hey, at least she didn’t get any nosebleeds! (I try and count my blessings where I can.)

Traveling to New Orleans

John and I aren’t rich, so this trip wouldn’t have been possible without financial support from Niki’s drug company. The company that manufactures the only medication we can use to manage Niki’s factor VII deficiency has a wonderful medical expense reimbursement program. (I’m so grateful that my HemoMommy friend shared this information with me last year!) The bleeding disorders community is scattered about here in the Bay Area, so our family tends to feel a bit isolated in our neck of the woods. Our local chapter has periodic get-togethers, but we can’t always make it. So, I mainly keep in touch with our extended bleeding disorders family via social networking sites and e-mail. Attending NHF’s Annual Meeting is one of the few times we don’t feel so alone.
We flew in a day early so we could settle in and adjust to the two-hour time difference. (Two hours may not seem like a big deal, but it is when you’ve got a toddler who is on a very strict nap schedule.) For obvious reasons, I didn’t experience the urge to go sightseeing last year. This year’s meeting was a tad more challenging because we had to balance work and play. I’m a planner by nature, which meant that having a trip itinerary in the Big Easy was an absolute must. There is a lot to see and do in the City of New Orleans, but NHF’s Annual Meeting provided a lot of sessions I wanted to see, too!
Prior to our trip, I scoured the session descriptions in the conference registration booklet. I was particularly interested in any and all sessions related to women with bleeding disorders (WWBD). We’re raising a WWBD, so John and I put priority on attending those sessions.

Women’s Bleeding Disorders Going Undiagnosed

My own mother experienced easy bruising and heavy menstruation that she thought was normal. It wasn’t until aftermy son Ethan was diagnosed that we discovered I’m a carrier of the FVII deficiency gene. We later discovered that I was a carrier because my mother had undiagnosed moderate/mild factor VII deficiency. Even after a lab test confirmed this a few years ago, she has yet to receive the direction she deserves, because her primary care doctor doesn’t understand the condition.
My mom has already gone through menopause, but I still think it’s very important that she at least be linked up with a hematologist who could make her more aware of potential risks associated with her FVII deficiency. She had a stent put in earlier this year, and when I alerted the surgeon about her FVII status, he didn’t seem too concerned. (Why do women with bleeding disorders seem to get swept under the rug by health professionals?) I’m not a WWBD, but I feel confident that our girl bleeders will finally get the representation they deserve with NHF’s newVictory for Women initiative. I felt a sense of empowerment the more I learned about the campaign.
The Annual Meeting’s reception for women with bleeding disorders was wonderful. We met in a room filled with strong women, delicious food and decadent sweets. What’s not to like, right? I made a lot of new friends last year, and this year was no different. John and I thoroughly enjoyed catching up with our extended factor family, other “lucky sevens” like Niki. It’s always amazing to watch Niki instantly reconnect with people she met when she was just 9 months old. Oh, but the highlights don’t stop there! After weeks of looking at pictures on the Internet, I finally got to see the Dana Maxx dress up close and personal. It is gorgeous!
And, I’m a little embarrassed to admit this, but I even felt a little giddy when I discovered that acclaimed photographer Patrick McMullan took a picture of Niki and John. The McMullan family’s story hits close to home on so many levels that I cried when I read “Iron Butterfly,” the HemAware Winter cover article about Connie McMullan and her daughter, Doreen, who died in 1979 from complications of a gastrointestinal bleed as a result of von Willebrand disease. Niki was the youngest WWBD in that room, and that made me feel quite proud.
I can’t wait to see what the future has in store for my daughter and all the women this campaign will reach. In the meantime, I’ve already started to teach Niki how to make a “V” for victory.

Life's Earthquakes

I've been behind with my HemAware Wednesday posts! Here's the link to the post I wrote for 11/3/10. Also copied and pasted below.

http://hemaware.org/blogs/diary-hemomom/life%E2%80%99s-earthquakes


We’re used to experiencing small earthquakes here in California, but fear of “the big one” is always there. I’ve come to realize the death of a loved one is a lot like a devastating earthquake—you know it’s coming, but you don’t know when. Preparedness is the best defense when disaster strikes, so emergency survival kits are a must in earthquake country. And in a sense, I suppose, I emotionally prepared myself for death in the same way. I knew I would lose my parents and grandparents someday, so I had my own “emotional emergency survival kit” packed and put away for safe-keeping. You expect these sorts of losses to happen, because death is a part of life.
The first earthquake I experienced was the Loma Prieta earthquake on October 17, 1989. I was 7 years old when it rocked the San Francisco Bay Area. My sister and I were home alone when it happened, and the experience traumatized me. My mother was stuck in horrendous traffic, and it took several hours for her to get home to console us. I distinctly remember crying and panicking with each and every aftershock that struck for days after. Sure, I can shrug off tiny earthquakes now, but the ’89 earthquake taught me how important it is to have a plan when disaster strikes. In fact, I’ve gone over our family’s earthquake plans with John on numerous occasions because, frankly, preparedness gives me a sense of comfort.
I wasn’t prepared for Ethan’s death at all. I thought I was “safe” because, you know, babies aren’t supposed to die, right? So, I felt like I was 7 years old again when his passing shook my soul to the core. Although I had experienced the death of a loved one before, none were as intimately connected to me as my own child was. It was traumatizing that my first real encounter with death was also the least expected. John and I were 25 years old when Ethan died. We were babies ourselves—we hadn’t even lost a parent or a grandparent. I didn’t have an “emotional emergency survival kit” packed for my sweet baby’s passing. But then again, what parent does?

The Aftershocks of Grief

Ethan’s death was the equivalent of an earthquake with a magnitude so high that it wouldn’t even register on the Richter scale. Loma Prieta had nothing on what it felt like to watch Ethan die. The emotional pain more intense than anything you can imagine. And, I’ve come to learn that the aftershocks of grief are equally terrifying. I never know where or when my latent anguish will rock me again. I’ve been known to bawl when I hear certain songs at church. If something triggers my memory, my eyes sting as I fight back my tears. The “big quake” has come and gone, but the occasional rifts instill a heartache that words cannot begin to describe.
It’s been nearly three years since Ethan passed away, and I guess you could say it has resonated within me a lot like the Loma Prieta earthquake did. I’ve survived the worst, so now I can deal with death. I’m able to shrug off “smaller quakes.” When my maternal grandmother passed away a few months after Ethan did, I was sad, but my grief was nothing like it was with Ethan. In a sense, death is easier for me to deal with now because nothing—and I mean nothing—will ever compare to losing my son. I’ve been desensitized to death, and that is a little sad. But that doesn’t mean I’m not terrified of another “big one.” I don’t think I could survive losing another child, and I’ve become a more fearful parent because of this. And that is sad, too.
Sometimes I feel like a broken record—like I talk about my grief too much. But, to be honest, earthquakes will never go away, just like grief never will.

Wednesday, November 24, 2010

"Party" All The Time

I'm back from my semi-hiatus, ya'll! You guys know I'm a stickler for keeping my entries in chronological order so unfortunately -- NO -- this post is NOT about our trip to NHF's Annual Meeting in New Orleans.

In due time my pretties, in due time....

In other news, call me silly, but I only recently discovered the "stats" tab on Blogger a few weeks ago. (When my blog died, and was reborn.) I was surprised to learn that I have quite a few daily visits from readers all over the place -- United Kingdom, Philippines, Germany, Japan, Russia, Canada, Netherlands, Sweden, Czech Republic, and the list goes on and on! Okay, the Philippines makes total sense, but the only logical explanation I have for the other countries is that you found my blog through HemAware.org. And if so, that ROCKS & I'd love to "meet" you.

With that being said -- ahem -- why not just hit the "follow" button in the Bloggy Friends area on my sidebar? I know I just put the "follow" option on my blog (when my blog was reborn -- woo hoo!), but please do follow this blog so I know you're out there. A few of you "secret readers" already came out of the woodwork, but I don't see you under my followers list. Family and friends, this includes you too! Let's get this party started!!! :)

Thank you for listening to my announcement of the day. Onto the update....

Saturday, November 6, 2010

You may remember that I mentioned in my last post that I was battling cold and allergy symptoms shortly after Halloween. I didn't have a cough or asthma symptoms, but I was dealing with watery eyes, a nose that ran like it was trying to win a friggin' marathon, and sneezing like I was allergic life AND air itself.

I. Was. Miserable.

Nevertheless, I continued to work and push myself like I always do -- gotta save my sick/vacation time/FMLA hours for emergencies with Niki -- and I *thought* I was doing better by Saturday morning. I'm very limited on what I medications I can take because of Noie, but my allergist started me on a Prednisone taper on Thursday 11/4/10 so I could keep my asthma in check. I'm breathing for two, ya know. My doctors and I get nervous whenever I'm sick because my history of asthma and anaphylaxis. The good news is all was fine and dandy asthma-wise. My lungs were clear and I had no signs any infection brewing. My doctor even gave me the go-ahead to use Benadryl for my allergies. Meanwhile, I was still reporting to work every day, and comforted myself (and my patients) in knowing that I was NOT contagious.

There is no rest for the weary. ;-)

I was feeling slightly better on Saturday. Actually, we had a wonderful time attending my godson and nephew's joint birthday party. I don't recall appearing alarmingly sick to the rest of the party-goers, but I'm sure I looked like something the cat dragged in. But -- hell -- that's practically a daily occurence anyway! I'm far from being one of those radiant pregnant women. I don't glow, I sweat!

The cubbies had a blast. We got there a little late which means I didn't have a chance to take  pictures of decor while it was still relatively untouched, but it was an adorable party. I really appreciated the concept of theme. I went to a Cowboys & Indians party once, but I really liked the idea of Buzz & Spidey battling. My CIL-to-be put the party together and I must say she did a really good job. (You guys know I'm a sucker for all things crafty!)  Frankly, I'm a lazy ass so I always make the boys pick ONE theme even though they've begged me do TWO themes before. I still haven't got the slightest idea how I could've put together a "Hot Wheels and Diary of a Wimpy Kid" party. But, it's okay because I'm done with boy parties for a while anyway. ;-)

Here are a few pictures from that day. Most were taken by John, but some by me too. Random note: John has taken this photography hobby of mine to a whole other level! He keeps making trips to the camera store to buy contraptions for the Canon! This was the first time that he shot with his precious Gary Fong diffuser, but I really like how much warmer the pictures are. And to think , I had to break my point-and-shoot camera, convince him to upgrade to a step-up camera, and then practically beg him to drop the cash on the T2i once I got sick of the step-up! Now I have to wrestle the damn thing away from him at home because, sometimes, he fiddles with it more than he fiddles with me. ;-)

The Cake
 My Godson JT
 And his brother AC
 These are my favorite
 Red Velvet
 More Yumminess
 Okay, I didn't get approval to post this partial face shot, but I hope you don't mind. I really gotta start asking people while I'm at fam parties to see if it's okay to post pics. I don't like doing it without permission , and I have so many shots that I wish I could post!
 AC is barely 2 yrs old, but he already has a great imagination. :)
 My Cubbies
 The Next Generation of "C-Boys"
Boo's Schnozzle
 Niki hugging the adorable LL

We were pooped when we got home. The boy cubbies practically collapsed when we walked through the door, but Niki was still up and at 'em. She was coasting on a sugar high so I just laid in bed and watched her play with her Daddy. I started to feel weak as I drifted off to sleep, but I just figured I prematurely pushed myself like I always do. I must have only slept for about 45 minutes or so, but then I woke up and it happened again....

I had another anaphylactic reaction.

I've been dealing with this for YEARS now and it's idiopathic -- which basically means the doctors don't know what causes it.  I've had tons of work-up -- octreotide scans, nuclear medicine scans, CTs, xrays, flexible sig, endoscopy, specialty lab draws, multiple 24-hour urine collection tests (yes I know the concept is gross) but multiple specialists haven't been able to figure out what's causing it. But what they do know is it's definitely caused by a delayed reaction to something I eat. I've tried to keep a dietary diary to correlate what it is that I'm allergic to, but nothing adds up. And, unfortunately, my food allergy tests have all come back negative. So, I'm pretty much tiptoe-ing around this anaphylaxis crap.

Eight years of walking on eggshells ain't fun, but I'm just going to keep doing what I do and hope for the best.

I felt an instant overwhelming sense of fear wash over me when the episode happened. I was barely moving air in less than 5 minutes. Luckily I didn't lose consciousness this time, but I was close to it. I vaguely remember feeling dizzy and staring at my SIL holding Niki. Poor Niki looked confused, and I hated that she saw me that way. I hate when the boys see me that way! My rescue inhalers didn't work and John called 9-1-1 immediately. He's seen me almost die from this on multiple occasions -- he's even shot me with my Epi-pen before-- but I shook my head when he frantically offered to administer it to me.

Epinephrine can save a life during an anaphylactic reaction, but its also a vasoconstrictor. Vasoconstrictors are NOT good for the placenta, and the use of Epinephrine has been known to cause fetal death. In laymen's terms, this means that poor little Noie wouldn't have been able to breathe because of the negative effect the Epi-pen could've had on the oxygen-rich blood flowing to my placenta.

Do you remember when I wrote this post? The last time I had a very bad episode and lost consciousness was when I was in my 1st trimester of pregnancy with Niki -- my 26th  birthday. And that's why it was such a miracle that Niki survived that ordeal because the paramedics gave me epinephrine when they arrived! Really, my doctors and the ED were absolutely amazed because I was barely 8 weeks pregnant. She really is a miracle cub, ya'll! So, given that experience, I didn't want to give myself epinephrine at all. I didn't want to put Noie at risk, anaphylaxis or not. I'd rather move very, very, very minimal air than instantly have no air to the baby at all.
I would rather die than lose another cub.

DCFD made it to the house in a matter of minutes. (They're right down the street.) The rest is a blur. I was panicked, and didn't feel like I was sucking in any air. John says my oxygen saturation was 79-80% by the time the firefighters got there!!!! I started having back spasms (similar to what it feels like when I go into labor) so I was sure that something bad was happening to the baby. They took me to the emergency room in SSF and I was given copious amounts of oxygen, several breathing treatments, IV benadryl, and magnesium. I was already on a prednisone taper, and I just took some about 4 hours before the attack.

The ER doctor told me that if I wasn't already on Prednisone, the episode could have been a lot worse. Luckily, I didn't have to be admitted, and I got to go home early that morning. I lost track of time thanks to daylight savings, but I think we were there for at least 6 hours or so. My oxygen saturation was 95% when I was discharged, but I didn't desaturate when I walked/exerted myself. And, that's always a good sign.

Before I left, the nurse checked the baby's heartrate and it was normal. But....I was very worried about Noie. I spent all day in bed on Sunday -- drifting in and out of sleep -- but Noie barely moved when I was awake. Even when I tried to drink apple juice and lay on my left side, she still didn't move. Her movement was sluggish that day and it worried me. I was thisclose to going to labor and delivery so they could do a stress test, but John and I decided to wait it out.

Luckily by Monday morning things were looking good. Noie was moving a little bit more and I had follow up appointments with my allergist. She ran some tests and I practically spent all day at Kaiser because she was searching PubMed (a medical library) for cases like mine so she could formulate a different treatment plan.  Wouldn't you know it, there are none. What happened to me on Saturday shouldn't have happened -- I was on prednisone & numerous inhalers -- but it happened and she couldn't understand why. Wouldn't you know it, she couldn't find any case reports meeting my criteria. She's the Chief of Allergy so I have complete trust that she's doing the best she could to help me. She hestiated to give me clearance to continue on with my trip to New Orleans, but she lived there for 3 years and she knew asthma-wise I wouldn't have to worry about the weather too much. She even recommended which hospital I should go to should I have a reaction while I was out there.

We've formulated a new plan of action for when I think a reaction is coming on. I can't do anything to prevent it from happening, but I'm hoping this new plan will help me from getting so bad so quickly. And, I just had a follow up with my Ob/Gyn earlier today so he could check on Noie, and she's doing fine too. I'm officially 30 weeks pregnant. Only 10 more weeks to go!!!

It's a "party all the time" here in the my neck of the woods, but I'm still cracking my whip and going strong.

Friday, November 19, 2010

Forget Mike Jones! Who IS John de Leon?

Tomorrow is my Lion King’s 28th birthday!

We met when we were 15-years-old so I’ll let you do the math on how many birthdays we’ve spent together. No one – and I mean no one – knows him as well as I do. We’re polar opposites, but there are so many logical and illogical reasons behind why we’ve been together for as long as we have been. So, for his birthday, I decided to put him at the mercy of my blog. Every year I try and do something a different to celebrate the love of my life. So -- you guessed it -- this blog post is dedicated to my illusive Scorpio.

“Back then they didn’t want me, now I’m hot and they all on me.”

Those lyrics remind me a lot of my hubby-to-be. Not that he has girls droppin' their panties for him celebrity-style (cause I’d kick his ass), but back when we were younger a lot of people didn’t think he was going to amount to shit. Now, he’s a dedicated family man and didn’t end up being a “jail bird loser” like everyone probably thought he would be.

John was what I lovingly call a “troubled youth.” He wasn’t violent or disrespectful, but he was every Filipino parent’s nightmare – young, reckless, and just didn’t give a damn what people thought about him. The guy was a black sheep! He had been in and out of handcuffs, and even landed himself a lovely vacation at juvenile hall for all of his shenanigans. My Dad unhappily declared “He looks like a gangster” the first time he laid eyes on John.

Oh, but my friends, that is what intrigued me about him!

John totally wasn’t my type when I got to know him more. John was a bad boy – fresh from Oakland/Alameda – and I thought he was as total asshole. He had a nasty habit of looking like he was angry all the time. He smoked, he had slicked back curly hair (I liked bald or close cut guys), and he always, always, ALWAYS used to wear khakis and his collection of red jackets from Structure. (Remember that men’s store!? Yes, I’m bringing it way back ya’ll!) And in case you’re wondering – NO, he DID NOT “claim” red -- he just liked the color.

I on the other hand, was utterly virginal and innocent. I thought smokers were disgusting, and I was Miss “I’m-Waiting-Until-I’m-Married.” Back then I actually used to give a damn how I looked -- I wore make-up and I didn’t just finger-brush my hair like I do on most days. I thought he was cute because he was dark and mysterious, but he wasn’t really someone that I would consider dating, ya know? Cause I was a goody-goody.

Then, one drunken teenage night – and it was my first time drinking too -- he kissed me. He says I kissed him, but uh-uh, he kissed me. The rest is history.

John’s influence rubbed off on me quickly. Haha, amongst other things. ;-) He quickly changed my "I'm waiting until I'm married" policy about 1 ½ months after we started dating. And, I even started smoking so he would think I was "cool." (Sad, isn't it?) A lot of people didn't "get us." He was a mean boy and broke my heart on multiple occasions, but I still ferociously tried to work it out with him because he was my "de-flowerer."

On the flip side, when he wasn't being a jerk because suddenly he decided that he was "too hard" for a girlfriend, John was very sweet. He'll probably kill me for saying this but he used to sing to me. Okay, he used to sing the "love verse" from Master P's "I Got the Hook Up", but still...it was sweet. Eventually he did a little Drop-N-Harm too. Lol! Annnnd he even wrote an essay about me in summer school.

John was emo back then, people just didn't know it. He drew my portrait once. And, I still have it in our scrapbook. ;)

These were the lovely things that helped me deal with his "hardness" even though he would rarely hold my hand in public back in the day. He looks back on our tumultuous high school relationship and laughs about it now. He feels bad for being so young, dumb, and stupid. And now here we are -- 13 birthdays later -- and a lot has changed about our relationship. He still likes to have his hard outer shell, but to me, it's candy coated. And he's melted in my mouth over the years. (Seriously guys, no sexual pun intended.)

I've worn him down and he has allowed himself to be completely vulnerable to me. I've reached the chocolate center ya'll, and it's delicious! Our relationship isn't perfect, but I know that come hell and high water he's got my back. And for his birthday I just wanted to let him know just how special he is to me.

Happy Birthday, Honey! I love you. And your butu too. ;-)

Tuesday, November 9, 2010

Nawlins...

I have a free minute before we head off to the airport. We're on our way to NHF's Annual Meeting in New Orleans. Our flight to leaves at 12:25am. It hasn't been smooth sailing though. Here's a brief list of what's been going on since my last blog entry:

1. Been sick with allergies/upper respiratory issues since last Tuesday.
2. Attended a super fun birthday party for my godson & nephew on Saturday. The night ended with me having an allergic reaction to something I ate. John had to call 911. I was scared for the baby.
3. Spent most of Sunday recovering at home. Happy that I didn't get admitted.
4. Spent my entire day at the doctors office on Monday. Still no answers to what causes my anaphylaxis. Rested most of the day. Baby's movement improved.
5. Tried to get some rest today, but it was virtually impossible. It's raining, and I'm nervous about flying tonight.

Last time I was on an airplane was in 2005. I needed to write to get rid of some of this anxiety. Wish me luck!

Friday, November 5, 2010

The Giants Win World Series….uh, exclamation point?

In case you missed it, the Giants won the World Series on Monday. And...the Bay Area has been afflicted by a serious case of "Giants fever."

Crowds went out to party, and a "riot" happened the night of the "Giant Win." The City of San Francisco hosted a ticker tape parade to honor the Giants on Wednesday. On that day, some people called in sick to work, others stayed in line for two hours to buy BART tickets, scores of people got stuck in snarled traffic, and quite a few parents allowed their kids to play hookie to attend the parade.

All of this because the Giants won the World Series.

Don’t get me wrong, I’m happy about their Giant victory -- after all, this will go down in Bay Area history -- but I really think end of the Series would have been more exciting if the Giants won it in San Francisco. If you ask me, the Giants should have let the Rangers win Game 5 so they could kick some Texas Ranger ass right here in the Bay Area. But hey, that could just be me.

(Aside from that, I really wanted to see CJ Wilson pitch. He's the only Texas Ranger I support because he digs hemophilia. Anything to raise awareness, my friends!)

I told you all I’m not a bandwagon fan. I missed Game 4 so I could take my cubs trick-or-treating for Pete’s sake! Aside from that, I wasn’t too worried about missing the game that day anyway because I knew the Giants would eventually win. I'm no psychic, but I think everyone had a feeling that the Giants would win the Series this year. Frankly, the Rangers didn't seem like they were putting up much of a fight. I'm sure their egos were soundly crushed after getting absolutely obliterated for ALL of the games in SF.

Can I be brutally honest for a moment?  The World Series bored me.

Game 5 was about as exciting as the Dela Hoya/Pacquiao fight. That fight and Game 5 reminded me a lot of what it feels like to have disappointing sex. Sure it sounds like it's going to be exciting, but just because something sounds like it's going to be good doesn't mean it's actually going to be good. (No offense, John.)

The only time I got excited during Game 5 was when Renteria hit that home run. Other than that, I was totally unaroused. Disappointing sex is like that, isn't it? You get one good play, but the rest of the time you're just waiting for the whole thing to be over with. I wouldn't exactly call Game 5 a nail-biting, suspense-filled game. Just like so-so sex, I felt like it dragged on. And when it was finally done...well, it was totally anticlimactic. Where was my orgasm, Giants?! Where were the fireworks? And the screaming announcers?

And this is exactly why I think the Giants should have won it in San Francisco.

I know I'm going to get a lot of flack for this post, but it's my blog and I'll say what I want. And, I'm not a hater..,I just had to get these feelings off my chest. I'm Giantly happy that the Giants won -- proud even -- but I can't say that I'm completely satisfied with the way things were excecuted. Maybe next time. After all, the best type of the sexual encounter is the one you have after the disappointing one. You know, when your lover tries to redeem themselves? ;-)

I'm looking forward to next year, Giants!

Here are a few pictures that John took at the ticker tape parade. I was at work, but John had the perfect view from his office. 

And this was just on Market!
 Fear the Beard
 Does painting a horse's ass seem a little odd to you or is it just me?


 Ohhhhh, Gavin!
 Can someone please explain to me why he is licking a red thong???
 Oooohhh Buster Posey!!!!

Tuesday, November 2, 2010

Happy Halloween!!!

It seems like Halloween 2009 happened just yesterday. That was the year of the Wizard of Oz and NHF's Annual Meeting in San Francisco. Even though we didn't go trick-or-treating that year (we partied with our extended bleeding disorders family at the SF Marriott) Halloween '09 will go down in "lion den history" for being THE BEST Halloween we've ever had.

Halloween 2009
 The Oz kids ;-)
Halloween 2010



This year was a little different. *Technically* this year was Niki's first "real Halloween" because she could actually partake in trick-or-treating. Needless to say, I was very excited to take the cubs out. Especially since we didn't get to trick-or-treat last year. Unfortunately, Game #4 of the World Series was also happening during prime trick-or-treat hours. Even though "Halloween/Trick-or-Treating > World Series" in my book, not all parents feel this way. I shudder at the thought of how many parents opted to stay home to watch the Series instead of taking their kids out to create magical memories.

So where am I going with this? You guessed it -- John stayed home.
 
The fact that the Giants made it to the World Series is awesome, but I'm not going to lie and say that I wasn't disappointed that he stayed home to watch the game. After all, you can replay television, but you can't replay life. I wanted to watch the game too, but I knew that trick-or-treat time would be over by the time the game ended. John's a guy -- I get it. He had complete confidence in my ability to handle Halloween duties for the night -- swollen belly and all!

It was I that took the cubs, SILs, and CIL out for an evening of tricks and treats.

I decided to switch it up bit and took the kids to Colma's residential area first. The city is practically a cemetery itself so I knew that it would be the perfect place to trick-or-treat. And...I was right! Being in my old neighborhood brought back so many memories. There is something spectacular about trick-or-treating right next to a cemetery on All Hallows Eve. I know from personal experience, and I was happy my kids experienced a piece of my childhood. :)

Halloween has changed a lot since way, way back in the day -- it's slowly dying out -- but Colma never loses its spirit.

A cemetery was right over that wall. The kids were weirded out at first. LOL!
 Everybody had the game on as they passed out candy...

 Niki was really enjoying herself. :)
 The boys got used to the spookiness.
 I couldn't quite figure this pumpkin out. ;-)


 Ironic, isn't it? A fake graveyard just a few hundred feet away from a real one.
 Only in Colma. :)
 I love this town.
 And this house...

 The cubs, my SILs, and my CIL "J"
The cubs. :)
 We don't care about no law 'round these parts! ;-)

The streets were packed with trick-or-treaters which meant that the houses tried very hard to conserve their candy. After spending about an hour in Colma, the older kids grew impatient as they continued to get only 1 or 2 pieces of candy from each house. It took a lot work to accumulate their loot so they collectively decided that they wanted to try a different neighborhood. I was hesitant to leave at first (finding parking was a nightmare) but it was their Halloween, not mine. We had only gone about up and down three blocks, but I was overruled. On the upside, all of the kids were completely desensitized by the idea of the cemeteries being so close by. (The boys aren't afraid of the cemetery at all thanks to Ethan.)

You can't see it in this picture, but there was a bunch of mausoleums just a few feet behind them. Aren't they cute? And brave? :-D

Unfortunately, we had to work even harder after we left Colma. We went to the TerraBay neighborhood thinking that we could end our night there. We've been going to TerraBay (with my SILs) since Boo was 1-year old because the rich folks that live there always give handfuls of candy.

This year? Not so much.

The streets were completely dead, and I blame it on the World Series. We tried some other local neighborhoods with no such luck. The World Series officially killed Halloween. Suddenly, everyone realized that we probably should have stayed at Colma. But...it was too late. It was close to 9:30 on a school night so we turned in for the night. Nevertheless, my cubbies had a blast that night, and so did I -- swollen uterus and all. 

P.S. I'm secretly happy that the cubs didn't get much candy this year. ;-)

Monday, November 1, 2010

The Day Before Halloween...

Here are a few pictures from my nephew J's 13th birthday/costume party. I wish I could post ALL of the that pictures we took that day. As always, I've neglected to get permission from the party's patrons to post their pictures for all the Internet to see.

Anyway, enjoy!

My Flapper Girl
 Yes, there was a stripper pole there. And yes, Niki took a picture with it. She wouldn't let go and this concerns me a little. Lol!
 My SIL trying out the pole...
 The Giants were playing that day...
 Boo took this picture...
 The family watching the game...
 L <3's Baseball. :)
 More Niki...
 Kevie
Boo & Niki
The liquor came out...
And then the DJ came...

 Then Boys Danced the Night Away...
Maybe he was dancing too. :)