My first time went a little like this

Hey guys!

Its only been a couple of days since my first post but the outcome has been A-MA-ZING! I have been able to start "Mission 5" (aka the search for other Factor V Deficiency buddies) and help advocate for my undercover FVD buddies (yep, I just came up with that) PLUS I have also found out that a couple of my friends and/or a member of their family have a bleeding disorder! Super cool if you ask me :)

I admit that while this has been my favorite part so far, there has also been another great advantage to starting this blog  - getting people's attention.

After writing and sharing the first post, I wasn't really sure how people would react to me writing about it. I mean, those that know me can tell you that I can get really personal in a matter of seconds (like, 0 to a 100 real quick). But it doesn't matter whether I'm willing to get personal or not with my peers, friends and even strangers - the question is: do they care and are they willing to listen? And apparently they do. I have gotten so much support, concern and questions (mostly about my period) in these last few days about what it is like for me. This is something that I wasn't really expecting but I'm so grateful and touched by it, which reminds me: THANK YOU MY BEAUTIFUL GLEN COCOs!

In honor of all the questions I was recently asked, today I have decided to talk about the first time I got my period and how it has been for me ever since. Yep, I'm about to get REAL personal up in here and before you try to tell me "Frances be modest" - um, no. Does this topic make you feel uncomfortable and claustrophobic? Press the x in your window - it should close and go bye bye (if you still feel like is not enough: please stand up, take a walk, ponder about life, etc - I promise: it WILL eventually get better).

Now, without further ado:

* Period: Shark Week, I'm-dying Week, It's-That-Chocolate?-Give-It-To-Me Week

There comes a time in every young woman's life when the uterus decides to pledge allegiance to the monthly (and sometimes bi-weekly or weekly) torture of releasing bloody waste out of the body. Does the uterus care? Nope. Do you? ABSO-FREAKING-LUTELY!

Sometimes the young woman is aware of this new change because someone in her family or maybe even a friend reveals the knowledge of its proximity and how to take care of it - unfortunately I was not. I know you are probably thinking: "WHAT?! You have a bleeding disorder, how could you not know?!" The answer to that is quite simple: culture. You may or may not know this but my family and I are originally from Puerto Rico. Back in the day you didn't really talk about any of that (in some places its still taboo) plus my family is super hush-hush and conservative about all that kind of stuff (obviously, I'm completely opposite).  Maybe this is the reason why getting my period for the first time was so shocking, scary and a moment of wtf-is-going on?!

It was the last day of my swimming classes. I was excited but I was also kind of pissy because the day before I had gotten into a mayor argument with my mom (I was 11 and at that age I literally argued about everything and anything). I decided to wake up and get ready before my mom got the chance of changing her mind of letting me go (she had told me I was grounded the night before). Anyways, I went to the bathroom and peed but then I realized something was different: there was blood on the toilet paper - like, a lot.  Not going to lie, my world literally stood still for a minute and yet I couldn't get my mind to shut up:  "I mean, here I am bleeding, with a bleeding disorder, and I am not supposed to bleed, and my swimming classes end today, and Im pretty sure I am dying, and I just can't believe I am going to die before I get my swimming certificate - like, really?" Once I realized I was still alive however, I decided to do the only thing that made sense at the time: I took a big gulp of air and screamed "MOM I'M DYING!"

After checking, double checking and triple checking, my mom was finally able to inform me that I wasn't dying - I was just getting my first period. I was relieved to say the least, but I was also mad that I hadn't known about it before. Nevertheless, my mom and my aunt sat me down and gave me a run down of things: I had to start using pads but not tampons because they believed it would get stuck inside of me (I swear some of these urban legends are hilarious), I couldn't go swimming during my period, periods were painful and periods usually lasted a week.

I memorized the information and began my journey into a period-filled-world. Little did I know that periods were going to bring me a lot of trouble - pain-in-the-butt kind of troubles.

Two weeks into my severe period - yes, I said two - it suddenly stopped and the world turned sunny, happy and wonderful! A week passed and the cycle began again - a pattern that would continue for another month.  If you are wondering what it feels like to have a severe period of two weeks and a week of rest in between - its basically hell. 

My mom quickly decided to take me to the doctor because that couldn't be normal.  I learned that the first time you get a period it can be irregular for a few months and sometimes even a few years because your body is still learning how to adapt to it. However, we couldn't really wait for my body to adapt at its own pace since after all it was blood that was leaving my body - something I really needed to stay inside of me. 

We went to the doctor and she advised that I should start using birth control to regulate it. I wasn't aware of the stigma around birth control at the time so I happily agreed without really knowing what I was putting in my body. We started with the pills but that quickly lost its magic so we decided to move up a level : the depo-povera-shot-level.  And it was wonderful - on paper. Yes, my period was finally regulated, in fact I wasn't really getting it at all! Yet, there were some downsides to it. Ever since I can remember boobs have been a part of me. Matter of fact when I was 11 I was already a C cup- yassss! But once I got the depo shot everything went up a few notches. For example, in just two months I gained 40 pounds, 2 bra sizes and my body was suddenly filled with stretch marks (something that is obviously normal but I had never had them before and these were long - especially the ones on my shoulders). Add to that my moodiness, and my constant cravings and the doctors worry about my weight and my depression and my self consciousness about my body and my hormones - ugh I was literally a Latina Hulk in progress. 

Once I realized that the depo shot was annoying and not really worth it (which took me 3-4 years by the way) I told my doctors I wanted to be off it. Oh, their faces were priceless!  Their eyes screamed "are you insane?!" while their mouths simply asked "What?!" "Why?!" Not going to lie, looking back the scene was pretty funny. But their questions were pretty valid - why did I want to come off it? Simple: I was tired of being told I had to lose weight, trying and not being able to and then getting really depressed about it. At first they didn't understand what I meant, I mean, the shot was being put on me consistently and I was still the same weight (185 lbs at the time). So instead of arguing with them, I asked them to compare the records with me from before and after I was given the depo shot. Voila! They saw the same thing that I saw and told me we could try getting me off the shot!

I was able to lose some pounds and show them I was even more right :) The world turned sunny, happy and wonderful! For about a year and a half.

My periods had been pretty good for a while but somewhere along the way my uterus remembered it had made a vow to torture - so, it began. I tried to keep it together, but in the end the uterus won. (Tun -tun-tannnnnn!) I went back to the doctors to discuss birth control possibilities (by now I was aware of what they actually were used for but I didn't really like them that much because I had always wanted a family and I didn't want anything to affect the possibility of me getting one). The first option was the depo shot and I shot it down like nobody's business. Then came the second option: pills. I happily obliged because although they stopped working for me at the beginning, they could potentially work for me now. And they did! For about a year and a half.

Not going to lie, by this point my doctors and I were pretty annoyed. They thought that the best option for me was to use the depo shot but I refused to use it again. So we looked for other options and the answer was Mirena: an IUD with progestogen. I agreed to it and an appointment was made with the OBGYN to put it in. I later found out that you aren't really supposed to put the Mirena in until you have had some children (but it is sometimes still done) and you REALLY aren't supposed to put it in if you are not sexually active - they forgot to tell me that VERY IMPORTANT detail. 

How did I find out about this? Well as I was laying in the bed with my legs on the stirrups, the OBGYN (which by the way, she wasn't the one I usually saw) was preparing me for the IUD insertion and suddenly gasped. 

"Wait you are not sexually active?" 
"No, why?"

 "Ok, I need you to take a deep breath" 

I took a deep breath not really knowing what was going to happen and suddenly I felt this sharp pain and heard a pop - she had broken my hymen. Talk about a painful first time, huh? I saw stars, constellations, galaxies, freaking black holes. My skin color, which is usually a chocolate chip cookie dough color (I have a lot of black freckles), turned to a pale-deadly-white color. It was awful. I couldn't decide if I wanted to throw up, sleep or crawl to my grave - yep, that bad. 

But thankfully I got better and the Mirena worked! Until it mysteriously disappeared from my body - LITERALLY. One day it just went puff and I didn't notice. Yep, it sounds crazy but its the truth. In fact I have sonograms, x-rays and even transvaginal ultrasounds to prove it. So where did it go? Probably down the toilet. You see another detail they forgot to tell me was that although it is pretty rare, Mirena's can actually fall out on their own. It is no surprise then that my body decided to be like "Hey wanna be more rare?! Sure!" - you know, keeping it real with the "rare" me.

Maybe it was the outcome of the Mirena falling out or maybe it was the fact that I actually became sexually active during the window of it falling out, whatever it was - it regulated my period. At first I didn't have it for almost four months, but then it began again and it was regular! One week of period with a great improvement - the course of it was also regulated! What I mean by that is that it no longer was a lot of bleeding for a whole week, now it actually went low-med-high-med-low flow. And the best part of all this? My body is doing it on its own! 

Thankfully the pattern has been the same for almost two years now and hopefully it will keep being that way. If by any chance my uterus decides to rebel, again, I am pretty sure we can work around it - lol just not with the depo shot or the Mirena!

Hopefully you gals don't go through what I went through, but if by any chance you do and/or you feel like the world is falling apart- just know I'm right here :)

zozo

Frances aka Fez aka Su Majestad

    [Photo by Lucas Cobb License CC. Some Rights Reserved]

I raised my hand and got an answer I wasn't expecting

Hello everyone! My name is Frances Rivera Pacheco and I have Factor V Deficiency - a bleeding disorder. Wow, that sounds so curt. Let me try it again.

What’s up? My name is Frances Rivera Pacheco and I have a bleeding disorder called Factor V Deficiency. Ok, that sounds so informal. *Sigh* Let me try it one more time.

Hey guys! My name is Frances Rivera Pacheco and I'm a 20-year-old college student who is obsessed with mozzarella sticks, books, nachos, people's love life, pasta and dancing. I have many aspirations, dreams and goals in my life and yet what the majority of the people that love me focus on is how I plan to achieve all of these since I have a bleeding disorder. (Yass - this is perfect!)

Maybe you know all about bleeding disorders or maybe you don't know what a bleeding disorder is. If you are aware of bleeding disorders and what they are (you go, Glen Coco!) - you may skip to the next paragraph. If you are not, then sit down and let me teach you about it :) According to Healthline, a bleeding disorder  "is a condition that affects the way your blood normally clots. When you get injured, your blood normally begins to clot to prevent a massive loss of blood. Sometimes the mechanism that causes the blood to clot fails, resulting in rapid or prolonged bleeding. Bleeding disorders don’t always affect blood leaving the body. There are many conditions that cause bleeding to occur under the skin or in the brain." (For more information: http://www.healthline.com/health/bleeding-disorders#Overview1). To recap all those wonderfully long and boring words: a bleeding disorder affects the clotting process. But what does this mean for those who have it? Basically we have to be very cautious and prepared for any situation that may make us have a bleed externally or internally. It can also be painful and torturous to us - don't even get me started on my period. Don't worry tho! We have come to learn to live with it and have fun!

Now you know what a bleeding disorder is which means that in a few seconds you will get to learn about mine specifically- Factor V Deficiency.  According to Healthline, Factor V deficiency, also known as Owren’s disease or Parahemophilia, "is a very rare blood clotting disorder that results in slow or prolonged blood clotting after an injury or surgery."(For more information check out this link: http://www.healthline.com/health/factor-v-deficiency#Overview1) In short,  I have a very rare bleeding disorder, which in case you are wondering (or are about to wonder) is usually found in 1 person out of a million. Yeah, talk about being special.

Fortunately, there is someone else in my family who has it and I don't feel so alone. However, she is younger than me and its kind of hard for me to picture what life can be like in the future since in all my 20 years I've never met anyone else (besides my family member) who has it - that is, until I raised my hand at a hemophilia symposium this weekend and I got an answer I wasn't expecting.

The "Powering Through Florida" panel was being hosted by Patrick James Lynch (aka this really attractive guy with severe hemophilia A who also happens to have his own mini web-series on YouTube about Hemophilia that is hilarious! Check him out at: https://www.youtube.com/watch?v=wgXLzu3cVto) with the purpose of inspiring us to keep living our lives and to not limit ourselves or our possibilities in life because of our health limitations.  They also advocated for us to be more involved with our Hemophilia communities since they were the ones that would support and understand us better than any other community. Patrick, for example, is an actor, writer and director who found his hemophilia community by advocating to and for others about Hemophilia. Bobby Monohan talked about how he recently found his hemophilia community when he decided to use social media and hash tags to find them. Liliam Bervis, on the other hand, spoke about how being the only woman with Von Willebran's disease back in the day in her hemophilia community made her want to find more women like her. Out of the four present in the panel, Allie Cashel was the only one who didn't have a bleeding disorder. As a young woman with lime disease, Allie spoke about how when she was younger she felt like an outcast since she didn't know others who had lime disease and how finding stories for her book (You can learn more here: http://sufferingthesilence.com/#sthash.wSHOYq8s.dpbs) on lime disease actually helped her find a community she didn't know existed or that she needed.

Through the whole thing I keep thinking to myself "These people have found their community and even though I love the whole Hemophilia community, I don't always feel like I fit in. Then again, what exactly am I doing about it ?" I realized right then and there that I HAD to ask them for help and tips because if they had managed to find others like them - so could I. I took a long time because my sister always says I ask too many questions (What? I am very curious homosapien ok), but then she asked a question and I felt entitled to finally ask mine. So I raised my hand and before I knew it, Patrick is talking about how he is pretty sure he knows another girl, who happens to be a blogger, with Factor V Deficiency and how he will connect me with her. No joke, I wanted to cry. In fact, the best way to describe this moment would be in Fresh Prince's words "Now, this is a story all about how my life got flipped-turned upside down." I mean, here I was asking a hypothetical question that I've asked before expecting nothing but tips and instead I get an actual name of someone who is like me. Plus she is also older than me, 32 to be exact! Like, HOW FREAKING AMAZING AND COOL IS THAT?! Now all I have to wait for is to see if she wants to meet and share stories and tears and laughs and even cookies! In short - I am pretty damn happy right now!

I believe God makes everything happen for a reason. Because here is the thing, you would think that by me being super outgoing and a writer (meh, getting there really) I would have already found the way to find another person with Factor V Deficiency. I admit however that the reason it took me so long was because I had this fantasy notion of "they are somewhere out in the world hidden from me and I shall find them - eventually and unexpectedly" which is why I never put myself out there since I was sure it would happen on its own. I mean it literally took me 20 years to ask for help, yet in the end it did happen that way: "eventually and unexpectedly" but that was because I finally put myself out there. Can you imagine how long it would have taken me if I hadn't? The horror!

After finding out about this 32-year-old me, I began reading some of the posts in her blog and I realized that I was missing the opportunity of finding others like me. Who knows how many 1-in-a-million girls and guys are out there wondering, "where in the world is my Factor V Deficiency buddy?"

Don't worry guys! I know you are out there - in the meantime,  just know I'm right here :)

zozo

Frances aka Fez aka SuMajestad