The Chance to Do Something Good

Still on the "pause" from the Wedding blogging, because something came up recently that I'm seriously considering.

I have the chance to do something good for women with Endo (like me).

A little minor history - Endometriosis was discovered in 1899. The first classification on it didn't exist until 1917, and the first paper on it wasn't published until 1921.

It's 2012, and we still don't have a cure. In fact, we don't even have a reason for it, or a treatment for it, short of cutting it out (it grows right back in most cases and often times the scar tissue does more damage than the Endo was doing in the first place).



Source

I was diagnosed with Endometriosis as part of my oopherectomy (ovary removal for all you non-medical folks out there) in July of 2010. Due to a severe (genetic) scarring disorder, removing it would compound the problem exponetially.

Now, I wouldn't say my case is "severe". Endometriosis isn't the kind of thing that easily appears on an ultrasound. Usually it has to be surgically diagnosed and after by diagnosis, my doctor and I opted to avoid other surgeries as much as possible.

Often times, the most painful cases are the least severe. (Weird, huh?) Mine is periodically painful. It's the other gastrointestinal symptoms that are more bothersome to me on a daily basis. When it does hurt, the description of "someone wrapped a ball of barbed wire around my organs" is pretty accurate. Ever tried jogging with a ball of barbed wire in your lower abdomen? Not my idea of fun either.

So where am I going with all of this? Yes, it's more than just a basic run down of Endo.

 I recently qualified for an independent study on a drug that is designed to help women with the pain of endometriosis specifically. Usually, Endometriosis patients are religated to the usual list of "pain meds" - Motrin, Tylenol, Ibuprohen, Morphine (in extreme cases), etc. All of which work, sort of, for a while. But usually we end up just grinning and bearing it. (Well, maybe the "grinning" part isn't so true. It's probably more accurate to say we power through it and do our best to keep our cool.)

So that said, I was pretty excited to hear about the study AND that I qualify - even though an endometrial biopsy is required (YOUCH!!!!!).

The study lasts for a year and half, and requires particpants to use 2 kinds of birth control and particpants can't be on the pill. Well, my friend "the pill" and I parted ways a few months ago, so that's okay. My Sailor and I are looking forward to adopting (surprise!) next year (yeah!).  While we're willing to let nature take it's course as well, we know the odds of my body cooperating are very slim. He's yet to be tested, so for all we know, we're just having fun practicing all this baby making stuff. (TMI? Probably - but hey! It is what it is.)

So, while doing this study could really help other women who deal with the same pain, but it could postpone any chance of a bio kid for another year and a half (possibly longer, but that's optional at that point).  I'm sleeping on it at the moment. My Sailor is behind me whatever I choose to do, but I know he'll be disappointed if I opt to do it - not because I'll (hopefully) be in less pain, but because it'll push off/lessen the chance of us getting pregnant. Even afterwards, I'll be older (nearly 34) and that's really kinda pushin' the envelope - an envelope that may not have any sticky left on it as it is.

I can hear all you Endo Sufferers chanting "do it! do it! do it!" at your screens right now. Trust me, it's a serious consideration. And, yes, with Endo that can't be surgically removed (like mine) there is little chance of pregnancy anyway - and we're both big on doing something that really contributes to the world, so it's a thought. The drug they are testing is NOT intended to be a cure and I've been given zero information to make me believe that's what they are aiming for, but if it can provide reliefe, I can't help but think of all the good it can do. (As with any chronic pain, depression is a really common issue. Add to that infertility - and moods tend to get ugly. Taking away the pain won't take away the infertility, but it might help lessen the load. Nothing makes you feel more useless than being in massive pain, grumpy, and infertile - even if you don't want to get pregnant, it still sucks to have options taken away.)

So there you have it.

My Sailor's New Horizon

Today marks My Sailor's last year as a 20-something. Soon, he'll join me in a great decade, the 30's.  So far, so much has happened in his 28th year, I can't wait to see if his 29th will end up as we hope - or perhaps it'll be even better.

So in all my wedding week re-cappy-ness (which I'll promise I'll return to as life slows down a bit this weekend), I had to take a moment to mark this day with a special blog post.

To My Sailor, My lover,  My Husband, My Friend,

Thank you for standing by me for years.

Thank you for being a good friend when I needed one.

Thank you for being the romance in my life when I needed it.

Thank you for leaving sweet voice mails.

Thank you for missing me as much as I miss you.

Thank you for taking a chance on me.

Thank you for helping me carve out this amazing  life.

Thank you for sharing this past year with me.

I can't wait to see what the 30's hold,

I can't promise it'll be wine and roses,

But I can promise we can start it out that way.

All my love, always and forever -

Happy birthday!

An overdue update

I promise I'll get back to our Sea World day soon. So much has been happening, I've been bursting at the seams trying to keep my trap shut about it. Those folks "in the know" are probably doing the same thing.

We have some big, huge, exciting changes coming our way. Professionally (as My Sailor decides to re-up or not with the Navy and I redouble my efforts to become a full time writer) and otherwise. I'm not going to go into detail here, but I didn't want my readers (ye brave, ye few) to think I'd forgotten about this blog.

Wedding Week Recap - Travel Day to Sea World

Where to start about our travel day? It really started the day before, as we finished packing and last minute crafts for the wedding. On about one hour of sleep, we were up and waiting for the our shuttle to the airport.

And that's where the hiccups began. But what is a big trip like this without a couple of hiccups?

When the shuttle arrived, we were informed that we'd booked the wrong day. We were actually on the list for the day before, and were a "no show". This shuttle was full, so we had to wait for the next one.

An hour of napping in the car at 2am later, and we made it aboard the next shuttle. They were kind enough to let us ride without having to pay again. We arrived at the airport just in time to check our bags and make our flight. We had decided to buy a few of the bigger things while in California - like Sean's suit for the wedding, the frame for our signature frame/guestbook, and a few other odds and ends. My mom was keeping my dress safe and sound in CA.

I have to say Virgin is my new favorite airline. At first, I was reluctant. After all, what does a producing company know about flying? While I'm sure their artists are very familiar with some high flying that doesn't involve airplanes, I doubted their ability to run an awesome airline. But in this case, the price was right, so I booked. I used Expedia to book, but went through Ebates, so I got Expedia reward points, and a few bucks back from Ebates on top of the already discounted price. Not bad. I figured I could suffer through a few hours on even a bad plane for the right price.

In this case, there was nothing "bad" about the plane!  Their seats were comfortable and came complete w/ a great free mix of music and movies to help pass the time. And they treat military REALLY well - like 10 bags free checked well!
However, they did manage to misplace one of our bags. It just happened to be our 1 bag that had our wedding goodies safely tucked away too (including fans for the bridesmaids, my bridal fan, my rehearsal outfit, the girls' wraps, our love letter box, and the flower girl's Mickey). After filing a report, Virgin went looking for it. While we were picked up by my dad and whisked off to lunch at Point Loma Seafood.  It was a great quick stop before we headed into my hometown for the night.

I jumped into a Zumba class before joining my parents for dinner at the house, just the 4 of us. It was really nice to relax and get to know each other. There was some mix up in getting our bag back to us. We knew they found it. At first, they called saying they'd drop it off between 6pm and 8pm. Perfect for us to head to bed early. Then it was by 10pm... after that, people stopped answering the phone as I left messages every hour asking for a status update. Around 2am, we gave up waiting and went to bed. The next day, they called back, apologized and said they'd drop off the bag between 9am and 11am. It arrived (safe and sound) at 10:45am. Whew! At least we got it - and everything was in one peice, but I'll be writing them a letter to let them know that this part of our experience was FAR less than pleasurable.

After that, we used our military free day and headed into Sea World!

T minus 2 weeks!

Last night's Girls Night hang out was great fun. Let's just say it's funny to try and play Taboo after a couple glasses of wine.

But that's not the blog I want to write today.

Obviously this blog is about how excited I'm getting for our California trip coming up in about 2 weeks!

My Sailor has actually been to Disney World more than he's been to Disneyland - but that is about to change, and I couldn't be more excited about it!

My Sailor on the Matterhorn for the 1st time, 12/2010

 Not only am I looking forward to sharing the newly renovated DCA (Disney California Adventure) with my new extended family, but I'm really looking forward to that "home" feeling I get whenever I see that castle. It's like a breath of fresh air.

I know some readers don't "get it". And that's okay. Yes, I know it's not a "real" castle. I'm old enough to understand the mechanics of how it the attractions are built. In fact, as the Disneyland Columnist of for Celebrations Press, I get to research these attractions in depth. I can tell you how many gallons of hydrolic fluid are in each Indiana Jones and The Temple of the Forbidden Eye attraction vehicle. I know why the crate inside the Matterhorn has the word "Wells" written on it. I can tell you the history behind Big Thunder Mountain Railroad as well as the mythology around it. I can even tell you what is in this Disneyland Time Capsule I'm photographed with below.

Me with the 'Time Castle' 12/2011

But none of that diminishes the magic for me. I'm entirely sure how Disney clicked with me. I guess all I can say is that it speaks to the dreamer in me. Many people, as they grow into adulthood, they forget what it was like to day dream. Or the day dreams change. Instead of day dreaming on what it would be like to find a unicorn grazing in a secluded forest, they change to "what would I do if money were no object?". Disney Parks to me are an embodiment of those day dreams. They are the next best thing to actually touching that fantastic mythical creature in the woods - at least for me.

That said, I've had the privledge to make some amazing memories in Disneyland. Though we didn't plan the wedding to be near here originally, it's amazing how things have fallen into place. Instead of taking everyone to Disney World, I get to add to my amazing list of Disneyland memories with so many friends and family that my head is swimming.

I'm also incredibly excited to share this with all the first timers! From My Sailor's family to Green Guy and Green Gal... It's going to be a blast. The only time I was with a group this large was when I graduated from High School in 1998! Granted, we won't be commando-ing the parks all together. But I suspect it'll be a delightful mixture of smelling the flowers, getting some sun, and partying like a rock star.... Mouse-style.

Some of My Sailor's Family and I in EPCOT, 3/2011

Lil Sis and I on the Matterhorn,11/2009?  

A Week Worth Celebrating

 In case you were wondering what My Sailor does, he's an MT on one of these.

Geeks have the coolest jobs.

Of course, I'm sure it's decidedly less cool when it's finally beautiful here in Washington, and he's stuck 20,000 Leagues Under the Sea. Today is one of those days. My Sailor is standing a 24 hour+ shift (called a Duty Day, which he does several times/week, regardless of weekends). This morning he left around 5:30 am and I probably won't see or hear from him until around 5-6pm tomorrow night. (See what I mean by 24+ hr shift?)

 While he's out there keeping us safe, I get some of my own down time. Sure, I miss him, but it's also nice to enjoy some down time flying solo as well. See- I learned a long time ago that being alone doesn't have to be this scary thing. In a world with instant connections (facebook, texting, etc) we're rarely really ever "alone" with our thoughts. It's almost as if we've lost something in that need to express ourselves or connect instantly. Maybe it's just the philospher in me, but I've found that I do some of my greatest growth when I'm alone. After all, the difference between "being alone" and 'flying solo' is just perspective.

I choose to fly.

Laughing w/ My Sailor and My Dad

That said, I'm happy to report that the amazing weekend has surely bled over into a week that deserves celebrating.

So here's the news!
My Brother bought a house! That's right, we're BOTH homeowners now! Who would have thought we'd become adults?! Certainly not me. Then again, that's a testament to our parents. Like I've said before, my brother and I (both adopted from different bio families) certainly won the parent lottery. We wouldn't be who or what we are today w/o them.

More good news - My Dad is doing amazing. His recent tests look unheard-of amazing, which fills my hear to overflowing every time I think about it. I mean, we all know our parents won't live forever. Both of my parents are now orphans themselves as their parents have all passed away. But I'm glad we're not staring down the barrel of hospice just yet. In fact, we're doing the opposite! His tumor appears to be dying a little, so there is a chance that, a few more rounds of this aggressive Chemo,  some radiation, and he might actually be a canidate to have it removed! We're far from out of the woods yet, but it's such a huge reliefe on my heart to know that he's doing well. Especially when I can't be there to see it all first hand. Looks like Dad will not only get to walk me down the aisle in about TWO WEEKS - but he'll be able to enjoy our visit with them in California. I'm a firm believer in the power of Prayers and Postive thoughts - so please keep them coming. At the moment, I couldn't feel more blessed or be more grateful.

Click here to find out about the race!

Another victory - I did 1/2 an hour of Insanity this week! I know that doesn't sound like much, but I really prefer Zumba. I'm the first person in our house to even attempt it. I won't lie - I'm pretty sore, and I'm not one for work out videos very much anymore. I get bored really easily, but it's a good way for me to fight that "I Can't" Stinkin' Thinkin' that infests my brain when I get bored working out. It's a mental excersize I'll NEED as I face the Run For Your Lives 5K on August 4th! I can smell it's stinky Zombie breath breathing down my neck from here! We're registered to run as "Survivors" through the course, and AFTER we do that, we'll be decked out as Zombies and we'll be chasing down other "Survivors" as Zombies! 

While I'm not seeing much motion on the scale (I seem to be playing w/ the same 3 lbs of late), I am seeing changes in more valuable areas - like how I feel emotionally and physically, how I look, and my attitude is far more confident than when I made excuses for not working out.

Now - to plan an active honeymoon!

Well, we've got a good start! Our first day in CA is going to include Snorkeling in La Jolla w/ the Leopard Sharks! I really want to go Kayaking in the Sea Caves as well that day, but our honeymoon registry has proven to be a woeful failure, so I can't count on gift money to add in excursions. I'm sure we'll do lots of walking around Disneyland pre-wedding as well, but I plan to check out the hotel's work out room as well - just to be on the safe side. No one said celebrating had to lead to blimpiness!

Tonight I'm celebrating a hard day of work, followed by Zumba, by attending a girl's night! Board games, good company, and a little alcohol. Very little in my case. I have a gown 2 weeks away! I'm sure booze will taste a LOT better in that gown than now anyway! Oh wait... we're not having booze at our wedding celebration.... oh well!

An Amazing, Fabulous, Exhausting, Wonderful Weekend

It's hard to believe it's already Tuesday. This great weekend just flew! Here's a quick run down -

Friday night, we had planned on seeing Dark Knight Rises, but when My Sailor got home, he wasn't feeling up to par (exhaustion kicking in - a constant companion in the military world). So instead, he stayed home and had some much needed rest. I went out to see the opening night of a local production of Dog Sees God.

The show was great. I've heard a lot about it. It won several awards throughout it's off-Broadway runs in 2004 and 2006. Dog Sees God warms the crowd up with a few laughs. It starts out with "CB" writing a letter to his Pen Pal about how his dog got rabies, killed it's little yellow bird friend, and died. Fans of the Peanuts will recognize the characters as they appear in their more troubled teenage years. But it ends with gasps and tears, unwaiveringly depicting the fallout of  probably the most relevant topics to have gained media attention over the past 3-5 years - Teen Sucide and Bullying.

The price of admission? A donation of canned food. As for me, I dropped $5 in the donation box and got more than my money's worth. (And I'm not just saying that because I know the director, set designer, and several of the actor's personally. It was incredibly moving.)

On that topic - I don't think this is limited to the bullying of gay and lesbian students, but rather speaks to anyone who has ever felt their life was so painful that giving it up was the only way out. I could identify with it on a deep level. After all (if you've read by blog for a few years, ye brave, ye few, steadfast followers), by the time I was in 6th Grade I had 3 different plans and the only thing that kept me from carrying them out to completion was that it would make my parents (who had invested so much in me) sad. I couldn't do that to them, not 'I couldn't do end myself.' That's pretty twisted thinking -  right? Thankfully, by the time I was solidly in my teens, my life and circumstances had changed. The hell that was my grade/middle school experience evolved into a broader (bigger) high school experience. In that sea of people, I could escape the boy who taught me what heart break was. No one knew I was the product of a rape (or so I was lead to believe until I was 19, but that's another story) and I could simply avoid the bullies who threw rocks at me and called me name for 9 years (k-8th - same small school, same small minded kids), and the small clique of girls who didn't know what to do with me. There was a place for creative souls that, quite honestly, my church up bringing didn't understand. I was encouraged by being part of Drama Club and taking the stage. Being in showchoirs helped me find my smile again. Oh, High School wasn't a social cake walk either, but I could breathe easier. By the time most kids were just starting to hit the road bumps I'd faced as a grade/middle schooler, I'd decided to start sharing my experience. After all, I figured I must be here for a reason if I was still alive, and I learned

So this show hit me on a very personal level. It's a brave little show I hope more people take the time to share with their families, despite the lanuage, sexual, and drug references.

I think it was in those dark times where I learned that hope really does spring eternal, because as long as we're on this side of dirt, there is a chance that things will get better, no matter what label you're looking to escape. Everyday we're on this side of dirt is a chance to redefine ourselves...

Anyway, I digress.. back to the weekend!

Saturday was delightfully busy. We did some chorse, I hit my Zumba class, and then we met up with some friends of some beer and wine tasting. We scored a delicious bottle of one of the best Malbecs I have every tasted at Rolling Bay Winery - a local winery in Bainbridge Island. It's not available yet, but knowing that we'll be gone when it is, the winemaker was kind enough to sell us a SIGNED, UNLABELED bottle! We can't wait to share it with my California vinaculture friends! (It's REALLY hard not to open it for a taste!)

We also saw Dark Knight Rises, which was really good (though ran a little long at nearly 3 hours).

Sunday, we slept in, did some chores, and relaxed until it was time to get ready to go see RENT! Sean had never seen it before and it was really great to get all dolled up and head into the city! We had a good time at yet another important show. Even though AIDS is no longer the death sentence it was when it first came on the scene, it still is an important show in understanding the fear and devastation in the arts community. The year RENT was written, nearly 49% of the people diagnosed w/ AIDS lived less than a year. Nearly 50,000 deaths in a year from it... Pretty scary stuff! Previous shows have emphasized the relationships rather than the AIDS aspect of the show, but this one was an interesting blend of the contemporary (movie) version and the original script. The energy was fantastic, and aside from a few Mic issues, it was a great show.

We won't be going out again until the wedding now, so it was great to go out with a bang!

I'm really looking forward to next weekend too. We'll be getting LOTS of housework and yard work done in prep for leaving for California on August 7th!