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Thursday, September 24, 2009

Lifted Off My Shoulders...

I took my FINAL final yesterday and I feel like a huge weight has been lifted off my shoulders -- literally and figuratively.

For starters, my backpack was noticeably lighter this morning. I didn't have a book, binder, or calculator to weigh it down and this, my friends, was pretty awesome. I literally had a huge weight taken off of my shoulders.

After I got off from work today, I didn't have to rush off to school or clinic. No more stressing about being tardy while sitting in barely moving, rush hour traffic. No more worrying about getting written up by my teachers or worse, having my grade lowered. I was actually able to relax and GO HOME to my family. Even more weight lifted from my weary shoulders.

To be brutally honest, I've felt an immense amount of guilt for being unavailable to them. Anthony constantly asked me, "Why you had to goed to school all da times, Mama?" and Kevin consistently proclaimed, "You have to go to school again?!". As for Niki, well some days I didn't even see her awake.

I've been S-T-R-E-S-S-E-D.

But honestly, I'm stressed out by DEFAULT. For starters, Ethan passing away last year was no picnic. Second, Niki is living with the same condition that took Ethan's life. I'm constantly on "Red Alert" with here. Third, I have to constantly be on my toes with the boys. I don't ever want them to feel like I don't have time for them. Add love, time and energy for ahem...intimacy, school, commuting for hours on end, homework, studying, tests at almost every class meeting, and a full time job and you tell me how relaxed you would be?

Would you believe that a classmate had the gall to ask me why I was stressed yesterday? He asked almost as if my proclamation wasn't legitimate. I really felt like screaming at the guy. A lot of my classmates know what I have to handle outside of school. I'm an open book so I was actually taken back by what I felt like was a sarcastically-toned question.

I mean, really!?

I wanted to say, "Take a walk in my shoes dude. Your struggles ain't got shit on mine. It's easy to study and not be stressed when you're practically a stay at home dad." But...I didn't. Not that there's anything wrong on with being a stay-at-home dad but, I felt like it was a totally inappropriate comment for him to make. So you know what I did?

I turned into a mini she-devil and itemized what I had to be stressed about.

After my mini-rant I recall him mumbling some comment that sounded like "that's what you've got to do when you have kids", but I just let it go. 'Cause really, NO FUCKING DUH. I wasn't complaining about having kids and busting my tail for them, I was merely telling him that I couldn't go to Elephant Bar to celebrate with the rest of my classmates because I've been stressed out and SICK. I still have the same responsibilities to uphold, but it's harder to do my thing when I've been fucking sick. It only added to my regular stress level.

I haven't been this sick in a long time. My old school blog readers know this. I think it's because my stress level is manifesting itself physically. I've been in the ER twice in the last month! I've also had multiple doctor's appointments and horrible vomit-inducing acid reflux in the past few days. Then, to top it all off Niki has been having horrible gum bleeds. She's happy, but goes through bouts of irritability that is FAR WORSE than the boys had. Her upper gums are tender from the blood/bruising. This is not good when it's finals week.

The good news is all of that negative crap is behind me now that I've gotten it off my chest. Thank God for my blog-therapy. :) Yet another HUGE weight lifted off my shoulders.

It's all smooth sailing from now on. Hopefully, I'll start my Sex Educator Training program in a few weeks. I get to be HOME with my kids and spend time with my man/family/friends. I finally have the time to STOP neglecting myself and get my health back in order. Life is good.

I'm feeling rather light and it has only been one day.

Niki's gums are even starting to look a little better. :)


Saturday, September 19, 2009


I am so grateful the wonders of technology!

Over the course of 20 months - after nearly TWO YEARS of searching - I've located total of 5 people with Factor VII Deficiency in the past 7 months. We are not alone and it feels good! It is emotionally draining to "live" with a chronic condition and NOT have any one to talk to. If it weren't for the internet, I would have never found these people. I had a hard time finding the rare among to rare, but I got it done.

I can only imagine how difficult it was to network before having the world at your fingertips.

I've also heard some heart-wrenching stories from some of these people, Niki's "factor friends" as I like to call them. There are so many stories about death, disease, and personal loss within the blood disorders community. It also makes me truly appreciate the fact that Niki is living in an era where medical and biotechnology only gets better and better. Blood transfusions are safer because of the blood disorders community. A drug, a wonderful drug all the way from Denmark received FDA approval in 1999 because of the community. And there is so much more to come!

Niki is so fortunate that she will never know a time when blood was unsafe and prophy wasn't available. Even more importantly, I hope she values all of her "factor friends" in the years to come. :)

To think, technology made this all possible. And it only gets better, right?

Thursday, September 17, 2009

This Sums it Up...

Came home from work and learned that Niki was showing signs of having an active upper gum bleed. MIL informed me that Niki's gums got progressively blue and swollen during the course of the day. Friday was a "no factor day". Contacted the on-call Pediatric HemOnc. The MD covering for Dr. Awesome instructed me to give her some factor. Active bleeding presumably stopped (up to now her gums are STILL swollen/bruised-looking) and all was well with the world again.

Had a very loooong and stressful day at clinic. My instructor came to do a site visit and I miraculously passed with flying colors. Got stuck in the midst of traffic, road rage, and speeding Walnut Creek yuppies, but made it home in one piece. MIL was kind enough to buy me a Sprinkles cupcake when she was out and about. So, after a very hard day, I took the luxury of indulging in it. Then....the shit hiteth the fan. I had an anaphylactic reaction less than 15 minutes later. I ended up in the ER and had the same doctor that Ethan did. "Dr. Z" remembered me. Subsequently, Dr. Z was also on top of his game and brought out all the bells and whistles. (I think it's because of what happened with Ethan.) I also learned very quickly that Epinephrine, Benadryl, and God-knows-what-else-he-gave-me makes me hallucinate. I thought it was Labor Day, that the Bay Bridge was still closed, and that I was in the Philippines all at the same time! I definitely don't enjoy being drugged, but I survived so I can't complain. That's always nice, right? Thank you, Dr. Z!

Slept all day long. Barely remember anything. I think I ate soup and somehow managed to hold it down. Slept some more. Man, that drug combo really effed me up! (Of note, this was the best sleep I've had since the program started in July!)

Received a wake-up call from Niki's nurse case manager. It's not a lab week, but her nurse instructed me to draw labs on account of Niki's gum bleed. I was still feeling pretty shitty, but duty called and I had to answer. Drew some blood and took it to the lab at work. I went home and slept some more. When I finally woke up, I STILL felt too sick/dizzy to go to class. Missing class was NOT good since I just got counselled about attendance AND I have finals next week.Nevertheless, I didn't go and missed a quiz. But...I wouldn't have been able to drive on my own so what else could I do? Missed tons of information during lecture. Yeah, I'm going to be real prepared for my final on Monday.

Saw a different specialist for a change. My regular doc was out, but I heard the phrase "IDIOPATHIC ANAPHYLAXIS"...again. This time I was instructed to self-administer the epipen no matter how mild or severe symptoms are. I was also informed that I'm using only about 50% of my lung capacity. Trying yet another drug combo in an attempt to keep me out of the ICU in the future. Three times in 27yrs is three times too many. Hoping things work better than before. Otherwise, I'm STILL alive and that's fine by me. :)

Got another call from Niki's nurse. Lab results came in and they weren't good. INR was 4!!!! She's supposed to be between 1-3 and she was at 2.5 last week. Her FVII level didn't get processed. Quest Diagnostics said it was in the wrong tube which is impossible! I've been doing this for SEVEN MONTHS and there is no way in hell I used the wrong tube when I only have two to choose from. The nurse and I discussed this and he and I both think that the lab just fucked something up. I HOPE this is the case since that INR is not good. I'm drawing labs tomorrow just to be sure. Also, I finally went back to class tonight. However, I was VERY ill prepared for my test. Missed one whole lesson when I was at the ER two weeks ago. This proved to be very detrimental to my grade. Studied my ass off, but didn't do as well as I thought I did. Made lots of stupid mistakes. But...I'm still feeling icky so that's probably why I didn't do very well.

And....that pretty much sums it up!

P.S. Sorry if you had to google every other medical term. I'm too lazy to link right now.

Friday, September 11, 2009


I am convinced that pain is on its own "Manifest Destiny" to take over my heart.

Why do emotional hurts manifest themselves physically?

This pain, this gut-wrenching pain, feels like a cancer growing inside of me. I can feel it gnawing away at my entire being.

So I pray.

I pray that this feeling will soon cease from preying on me. I want it to stop feasting on my positive thoughts. I just want to be me again! Blissful old Tiffany...I miss her dearly.

Oh Lord, do I pray for resolution!

Now, it's just time to wait and see what happens.

Wednesday, September 9, 2009


I am happy to report that my Queen now has two tiny tooth buds! :)

I noticed that her lower left central incisor sprouted on 8/21. Naturally, I felt bad for not seeing it sooner (it actually came in on 8/20), but thankfully I won't have to miss any milestones now that I'm withdrawing from the program. (See, there's a positive side to every negative one!)

Niki's initial "tooth-cutting" didn't result in any bleeds. Great news, right? Unfortunately, she did have a tiny gum bleed last night.

Niki was gnawing on a teether when lo and behold, a bleed started. The bleeding stopped after about 15 minutes (we used cold teethers to aid in clotting) so the Hematologist covering for Dr. Awesome said we didn't have to use Amicar yet. We can do without Amicar as long as her gums don't bleed for more than 30 minutes AND clotting can be encouraged with cold teethers/pacificers/wash rags.


In case you didn't already google it, gum bleeds tend to look scarier than they actually are. The blood mixed with saliva can be alarming at first, but we're okay as long as we know how to differentiate between GI bleeding and gum bleeding. I've seen both so I'm not too concerned.

I've become a pro at removing bloodstains anyway. ;-)

For your viewing pleasure, here is a pic of her first tooth!

And....another of the funniest picture EVER!

Niki the Velociraptor!

Saturday, September 5, 2009

It's Done....

About two weeks ago, I got "the call".

After subjecting myself to placing numerous phone calls, waiting for said phone calls to be returned, hours of Internet research, making visits to the hospital & city hall, and a little over 1 1/2 years of has been fixed. My baby boy is now legally dead.

The funeral home called me today to let me know that Ethan's death certificate is available for pick up.

I feel better and worse at the same time. Does that make sense? I'm glad that my persistence paid off, but I hate that I have to re-live his death, again. I really don't want to see the damn thing, but I know I have to. It took so long for them to fix the error. As a matter of fact, they weren't even sure if it could be done. Death certificates hardly ever have to be fixed so not too many people make the request I made. Nevertheless, it had to be done.

You see....his name was wrong.

The hospital alerted me that this might happen. After all, he was admitted and died under the name the hospital gave him. They had to give him my last name in order to associate him with my health insurance. (I work for the hospital and trust me when I say that this is standard practice for all newborns.) The fact that his temporary name became permanent was the bureaucratic price we (his parents) had to "pay" for not being married. As a matter of fact, his medical records are still listed under this name. (Gotta love that "red tape", folks!) So in case you didn't know, he was referred to "Ethan Intal" during the final days of his life. When I got his first certificate, I was at the very least expecting to see his birth name as an alias, but that section was blank. So legally, my sweet baby was still alive.

Ethan Intal was the one that died, not my son.

I distinctly remember the day his first certificate came in the mail. I wanted to rip the damn thing up, but that wasn't going to do a fucking thing to change that my baby was gone. Instead, I neatly tucked his incorrect death certificate away. I wasn't in the right state of mind so naturally, I bawled like an idiot. I did the same thing when his social security card came in the mail two days after he was buried. Once all of the ugly sobs stopped tearing through my body, I vowed to fix his certificate.

So now, after a very long wait, it's done.

I'm going to the funeral home to pick it up tomorrow. And tomorrow, I get to see his diagnosis and cause of death...again. The same diagnosis that Niki lives with today.

I hope to never see "FVII Deficiency" written on another death certificate again.

Friday, September 4, 2009

I'm in Trouble...

So, I had yet another crap-ass day yesterday. I got in "trouble" FOUR times at class last night.

Yes, ME....little old in school. What the eff?!

Pigs are flying somewhere in the world, I tell you.

Academically, I'm solid. I usually average a 84-90% on my exams. Not too freaking bad for someone who: (not listed in order of importance)

1) Gets off from work at 4:45 and makes it to class in Richmond during RUSH HOUR by barely 6pm.
2) Loses sleep after getting home from class at 10pm, sometimes 11pm, to study.
3) Attends work AND school full time!
4) Is only home Friday/Saturday nights and all day Sunday. (But is usually studying/resting)
5) Has THREE kids to care for.

Not too freaking bad, right? But, alas, life gets in the way. Even though I'm busting my ass, it is still not good enough. I am officially on the radar, folks.

For starters, I've been sick. So I've missed one class session (when I went to the ER on Wednesday) and two clinical sessions. (One last Saturday because I was sick with the flu or something and the other this past Tuesday because I was moving.) Shit happens. What can I do? I don't like to miss school, but I had to.

So, yesterday I had to sign two counseling forms. One for violating "school policy" about CALLING BEFORE I miss school. (Ya know, BEFORE I went to the ER.) I was already in the ER when JD went all the way to Richmond to give the message and drop off my homework BEFORE class started. However, because I didn't follow school policy verbatim by CALLING, I got written up. Bummer, right? The second counseling I received was for my attendance. I've missed two days of clinic and that is no good.

I also got two separate counselings for the same offense - leaving for 10-15 minutes during lecture. But let me rewind a bit...

I am all about full disclosure. School policy clearly states that cell phones MUST be off during lecture. At the start of the semester, I made it very clear to both of my teachers that I had to keep my cell phone on because of the kids and Niki's condition. The cell phone policy is a little more lax for the evening program so it was totally fine.

I swear to you, I've only had to answer the phone a total of 3-4 times in the middle of class. However, my attempt at "full disclosure" has backfired. Apparently, I've developed a pattern that both of my teachers took notice of. They have been talking with each other and somehow they attributed my leaving class to "taking advantage of the arrangement we made".

This is far from the case.

I LOST a child. I'm not going to risk losing another one by jinxing it and taking advantage of her condition. I would NEVER use Niki's condition as an "excuse". But to my dismay, this has become their perception of me. There is nothing I can do about it.

In actuality, I leave class because I'm fighting to stay awake. By 8:30-9:00pm I start to feel my eyes droop. Despite the copious amounts of coffee I drink throughout the day, there's no way around it. ...I am exhausted. I need to take a breather and splash cool water on my face or get fresh air. I am MOST definitely NOT chillin' on the phone taking advantage of the "perks" associated with Niki's condition.

I am a firm believer in NOT fucking with the universe.

Nevertheless, I got in trouble. My teachers has been talking and made up their mind about what they thought I was doing during my "frequent breaks". It sucks, but I had no other choice than to sign the paper. There was no section for me to make a comment either. Nice!

Okay, so I'm sensitive right? I hate to admit this but...I teared like a blubbering fool.

I've been sick, stressed, and exhausted. Normally, I can keep it together, but everything kind of culminated to this result. I just really felt like crap so I finally admitted that I was thinking about withdrawing from the program. (insert sniffles and waterworks here) I really didn't want to say anything until the semester was over, but they gave me no other choice. I was cornered. So now my teachers know. I expressed my desire to at least complete the semester because, in all honesty, I will NOT feel right until I at least get to see the fruits of my labor.

Why quit now when I only have three more weeks left?

So, the cat is out of the bag. I just need to survive the rest of the semester and I'm golden. :)

Thursday, September 3, 2009

Here We Go, again....

The good news: I survived another contraction.

The bad news: I've experienced way too much "change" in the past 48 hours. My Jeepny, Home Sweet Home, and "Bay-gull" are all gone from my life.

Needless to say, I'm kind of in a funk right now. To add more insult to injury, it looks like I'm going to have to withdraw from the Radiography program for now. (Yeah, I know, it sucks.)

Niki is probably going to have her port surgery in March/April so I'll have to take a few weeks off from work AND school. Then, in Oct/Nov my day rotation starts and I'll only be able to work 2 days a week. I've been applying for job transfers since March (when I got accepted into the program) and I've spoken to several department managers. ALL of them (including my current manager) said they wouldn't be able to accommodate my school schedule (day rotation) even if it was only for six weeks. Unfortunately, I have to save all of my vacation time for Niki's surgery. And no, quitting Kaiser to go to school is NOT an option. A one month supply of Niki's prophy costs close to $50k. Even JD's health benefits can't beat my $5 co-pay.

So, I really don't have any choice.

I have to withdraw now (after the 1st quarter) before I end up owing too much on the forgivable loan. Each semester costs $1000! The loan is only forgivable if I complete the program and find a job 3 months after I graduate. My balance will only get higher as the quarters progress. Now that I know I won't be completing the program on time, it would behoove me to withdraw now. I can come back and resume the program next year anyway.

On the upside, in the interim, I think I'm going to resume my Sex Educator training. I got accepted into a training program just before Ethan passed away. I declined my acceptance because I wasn't in the right state of mind to learn about "sexy stuff" at the time. Maybe all of this "radiography difficulty" is God's way of redirecting me back to my original passion.

The training program starts in October. (Exactly one month after the quarter ends.)

Life sucks, but it goes on right? I've experienced more traumatic things. (Losing Ethan was definitely no walk in the park. Have a baby, wait seven days, and imagine how it would feel to have your baby die.) Compared to that, all this "change" is a piece of cake. Nevertheless, I'll bounce back. I always do. :)

Helen Keller is famously quoted for saying:

"When one door closes, another opens. But we often look so regretfully upon the closed door that we don't see the one that has opened for us."

I couldn't agree more.

Tuesday, September 1, 2009

G'bye Home Sweet Home

Tonight is our final night at home. Escrow is closing 12pm tomorrow and some stranger is going to live there.

The house is virtually empty now. All that's left are the dings, tiny fingerprints, and smudges that my kids lovingly left on the walls.

I'm going to miss my home sweet home.

I'm so sad, I can't even write about it right now. F*ck.