Friday, April 30, 2010
Wednesday, April 28, 2010
Today is exactly two weeks until my next surgery to treat my Stage IV Endometriosis. 14 days. The countdown is on.
Naturally, this surgery is weighing heavy on my mind. I'm anxious; I'm nervous; I'm hopeful. It feels like everything is riding on it. I ache to return to my normal daily life. Though surgery is not a cure, it could result in the reduction of my pain & symptoms. I pray each day it will.
This will be my fourth laparoscopy & my first robotic-assisted surgery. Some of the potential benefits of the da Vinci robotic-assisted surgery include: less invasive, more precise, reduced bleeding, shorter recovery time, decreased risk of infection.
It will be performed by doctor #3. My previous three laps did not reduce my pain. I have (cautious) faith that my new doctor will be able to remove my fibroids (one large, one small), extensive endo implants, ovarian cyst & free my bowel from my uterus. Depending on the condition of my left ovary, he may remove that too. My left ovary seems unhealthy & cystic, but thankfully my right ovary is healthy.
Over the next few days, I will be sharing some of my tips for surgery prep. I hope to provide some valuable ideas for other endo sufferers who are preparing for surgery. Please leave comments if you have any surgery prep gems to share. Gracias!
Tuesday, April 27, 2010
This week is National Infertility Awareness Week. After reading my friendo Jeanne's blog post yesterday, I added the Resolve National Infertility Association badge to my page. You can click the Resolve badge (below right) to find out more about their advocacy work & ways you can help. Infertility is a devastating part of living with endo for many women. Resolve offers helpful resources, tools and education to women & families facing infertility. Let's help build awareness this week & every other week of the year!
My husb recently relayed an exciting discovery about our home. We have the ability to enlarge our (teeny tiny) master bathroom. There is unused space between the bathroom and closet. I am already envisioning my self...surrounded by candles, soaking in my enormous new jacuzzi tub! We don't have the time or money to start this now, but just knowing it's a possibility thrills me.
There is nothing like soaking in a hot tub on a crampy day. Add jacuzzi jets to the mix, and you create a little slice of heaven.
Someday this dream will be a reality. Until then, I'll have to settle for baths in my small, boring, non-bubbly tub.
After an encouraging conversation with my Aunt Darrelyn, I up and did it. I joined the Twitter. haha.
If you want to follow me, I'm endofriendo.
Monday, April 26, 2010
I thought of the following analogy today.
My endo is like Cousin Eddie. You know, from National Lampoon's Christmas Vacation. Endo showed up unannounced and uninvited, disrupted my entire life, threatened my job, demanded my full attention, and cost me money...just like Cousin Eddie did.
I look forward to watching this movie each Christmas season. It still makes me laugh, year after year.
Speaking of constipation...
(Disclosure) I realize that some of my posts may be TMI. Here's the thing, Endo is not pretty. Believe me in other contexts, I wouldn't get into all of this with random people.
But this is my blog about living with Endo & I've got a tip worth sharing. Especially if you are a bathroom reader like moi.
One major consequence of my Endo is that my bowel is entangled with my uterus. Bowel movements are often excruciating.
Now, I have always been one to read while I sit on the commode. It runs in my family. Actually, it's more like I have to read in there. I'll make do with a shampoo bottle or soap dispenser if nothing else is available.
Anyway, here's my tip. I started doing sudoku puzzles on the potty. It helps me focus on something other than the pain. I don't have time to suffer, I have an important goal to complete. This is tricky work folks, one wrong number & you screw up the entire puzzle!
I discovered finishing my business and completing an easy level sudoku, often time up the same. Sometimes it takes more than one.
I keep my small book with attached pencil on the shelf in our bathroom. Oh, and I keep my big fat book in the living room with the other magazines.
...I guess I really like sudoku. It's something from my "normal" life I can still do.
Here's a link to a free sudoku site, if you want to play. Here's a description of how to play, in case you need some tips. If you have this predicament, maybe a sudoku might distract you too.
Sunday, April 25, 2010
Often in the morning, I am just not hungry. I have been trying to eat a healthy diet & have read numerous articles stating the importance of breakfast. I used to drink coffee, but it often upset my stomach. (That's no way to start a day!) Plus, I know it may be helpful to limit my caffeine consumption. So I recently started making homemade smoothies for breakfast. They are delicious & nutritious!
My friend Leah shared the key ingredient to creating the perfect frothy smoothie - frozen soy milk cubes. I adapted it to frozen almond milk cubes. Simply fill an ice cube tray with your choice & pop it in the freezer. Both work great! Here is my recipe friendos:
Vanilla almond milk
Frozen vanilla almond milk cubes
Fresh strawberries, sliced with stems removed
Throw all the ingredients in your blender. It's that easy! I put the cubes in first, so they are closest to the blades. Play with the amounts of each ingredient to make the consistency you desire. I never measure, I just eyeball it. This is the simple recipe. Sometimes I add other berries or banana slices. I particularly love adding fresh pineapple chunks. Be creative!
The above links are the brands I like to use.
BONUS! Here's a link to a coupon for Almond Breeze. Click here to sign up for Stonyfield coupons.
If you try it, please let me know what you think!
A friend recommended Yogi Tea Get Regular as an alternative to laxatives. I tried it a few times and the tea has worked well for me. The key ingredient is Senna Leaf. Research revealed mixed reviews. The box advises not to use the tea for more than ten days in a row.
I was anticipating an unpleasant flavor, but it actually tasted pretty good. I only added a small amount of honey.
Here is one informative article I found online regarding senna leaf. I encourage you to use caution and conduct your own research to decide if it is right for you.
Any thoughts friendos?
My Aunt Suz shared this prayer with me while I was preparing for my last surgery. We're unsure of the origin, so my family calls it Aunt Suz's Prayer. When I get overwhelmed, I recite it to calm myself. It especially comforted me in the hospital as I awaited my laparoscopy. I keep a couple copies around my house to remind me.
Saturday, April 24, 2010
Just thought I'd mention, AF made a very unexpected visit today.
I'm in the second month of my Zoladex treatment (to create a faux menopausal state), plus I have been consistently on the NuvaRing (to suppress my periods) since January. So how is this possible??? Great question! Answer: You got me. My poor confused brain. (Have I mentioned I hate taking these drugs!)
Well, I'm gonna look on the bright side. At least now I know why the last two days have been extra miserable.
Friday, April 23, 2010
I present to you my friendos, my very own collection of Little Miss Endo.
Little Miss Heating Pad~No adventures for her. She has to stay plugged in after all, so she can't stray far from the wall. She's often curled up in the fetal position. Not the most exciting book.
Her cousin Little Miss Microwaveable Heating Pad is pretty boring too. She constantly has to reheat her pad & drinks lots of cold tea to reduce the heating-pad-induced sweats.
Little Miss Migraine~Poor girl, everything makes her head pound: sound, light, movement, touch. She can barely function. Sometimes it even makes her vomit.
Little Miss Horrid Cramps~It's impossible to be comfortable when enduring stomach & back cramps. She's screwed. She can barely walk and don't be surprised if she doubles over in pain. Don't misunderstand, she's a tough cookie. But everybody has a limit.
Little Miss Putrid Gas~There's no politely holding these in folks. When they bubble up, she's gotta let 'em out. They'll make you gag & run, no doubt. She may try to implicate Mr. Dog. He doesn't mind taking one for the team because he senses her pain.
Little Miss Weepy~Even the stupidest of commercials will make her sob. She craves a good chick flick. Indulge her & give her a hug. She might get your shirt wet, but it will dry.
Little Miss Wino~She often slurs her words, but she seems to be the happiest Little Miss Endo.
Little Miss Pissy~Just bring her dark chocolate & let her be. Anything else will just piss her off anyway. (That doesn't mean you didn't do something infuriating, by the way, so don't blame her for everything).
Little Miss Out of Sick Days~It sucks to be her, because she's forced to suffer AND be at work. She feels obligated to fake a smile and pretend like she's fine. It's exhausting. If only she could take a nap in the conference room without getting caught.
Little Miss Rage~She's angry, but can you blame her? She feels terrible. I love that she doesn't take crap from anybody. Even Mr. Tickle knows he better keep his long-ass arms away from her. Because unfortunately, right now, nothing is funny.
Little Miss Bloated~Her comfy pajama pants are her most treasure possession. Sometimes, she can't zip up her jeans, and that makes her sad. So she just wears her pjs for the entire story. They are really cute; I want a pair.
Little Miss Relieved~She finally stops bleeding & can return to skipping around with her buddy Little Miss Sunshine once again. Well, at least for now, that is. Their periods have synced up, so they make a harmonious duo.
I'd love to hear your Little Miss Endo comments & character suggestions!
Thursday, April 22, 2010
Let's get back to talking about Endo.
Today I added the Create Endometriosis Awareness & Understanding petition to the blog. You can find it down on the right side. Please click the link to sign our petition, I just did.
The petition was started by my new Endo Friendo Jeanne, to raise awareness about the facts regarding Endo. An estimated 89 million women have this disease, yet many people know nothing (or worse yet, they know false information) about Endo.
Thanks to Jeanne for sharing the information & link for the petition. Let me know if you are interested in posting the petition on your page. Everyone is encouraged to sign it, not just fellow Endo sufferers. Thank you for your support Friendos! Together, we really can make a difference.
Wednesday, April 21, 2010
My Mom's birthday has always been a sad day for me. This year I was inspired to focus on celebrating her life & how I can still be close to her, even though she has been gone for so many years. I thought it would be nice to share my day with you.
I looked through a few old pictures. I'm fortunate to have many photographs of my beautiful Mother.
For years, I have thought about getting a cake to celebrate her birthday. And this year, I finally did. My son & I went to Dairy Queen in search of an ice cream cake. We picked out the smiley face cake above, as a perfect reminder that I can choose to celebrate her day with happiness. I think we may have started a new tradition.
My son & I, we're car singers. So while I drove, I played a mix that I made for my Mom a couple years ago. And together we sang. It was the loveliest part of my day.
Then our friend (not even knowing it was my Mom's bday) brought me a gift. His videos from our wedding! I have been so anxious to watch these & I love that he brought them on this day.
I also had an enjoyable conversation with her younger sister, my Aunt Darrelyn. Both of her sisters have the sweetest Louisiana voices. I feel like I'm talking to my Momma when we talk & laugh & that always makes me happy.
It felt restorative to smile & think of her today.
Today celebrates the day my Mother would have turned 59 years old. She died tragically at the age of 31. I miss her. I never stop wishing she was here with us.
She loved Rickie Lee Jones & so do I. So here's a song for you Momma, on your birthday.
Tuesday, April 20, 2010
I am so excited to share the following link with you! I'm ecstatic to learn of other women blogging about their endo experiences. It is a great tool to connect us all, no matter where we live.
Click here for a link to networkedblogs.com Top 28 Blogs in Endometriosis.
This is going to provide me countless hours of research. I can't wait to jump in!
Saturday, April 10, 2010
I am blessed to have loving family and friends looking out for me. Thanks to my Aunt Jeanne for sharing this information with me!!
She saw this information on the TV show, The Doctors. They discussed a new, non-invasive procedure for removing uterine fibroids. There are several links on this page. You will need to scroll down to the bottom of the page.
Click here for The Doctors show synopsis on April, 9 2010
This was the first time I heard about MR focused ultrasound, so I can't vouch for this info. But it is exciting to hear about the potential of new procedures! I'm gonna look into it & I'll let you know.
Thursday, April 8, 2010
I found some interesting information on the website womentowomen.com
Click here to find out more. This particular article discusses symptoms, natural and conventional treatments, and emotional factors associated with Endometriosis. There are also many other pages full of valuable information.
Today I am focusing on looking toward the future, being happy for today and not dwelling on the past...so much easier said than done.
I had my appointment with the new doctor (aka dr #3) last week. He came highly recommended from a couple friends as a skilled endo surgeon. He gave me a completely different (and much better!) diagnosis than my former doctor, dr #2. He is not hesitant to perform the much needed surgery, my only option to stop my endless pain. I am a great candidate for a robotic laproscopy!
Dr #2 started me on a six month Zoladex treatment in March, by injecting a three month time-released capsule into my abdomen. Dr #2's office informed me after my incomplete laproscopy in February, that this six month treatment was going to cost $3,840, and none of it would be covered by my insurance! I was only able to start the treatment in March because I was hospitalized due to severe pain. After speaking to my patient advocate, she explained a way to cover the medication simply by coding it differently. Therefore, dr #2 not only prescribed a scary drug that I did not need, but I almost paid close to $4,000 (that I do not have) for it!
Dr #3 explained why all this was unnecessary. This means the drug in my abdomen that is confusing my brain into a fake menopause is FOR NOTHING...But I gotta let it all go. All the misinformation from dr #2, who had the nerve to perform surgery on me TWICE that he was not qualified to do. And I have to let go that I ALLOWED him to cut me open TWICE.
After being unable to complete my surgeries and leaving me in severe pain, dr #2 made another shocking decision. He willingly left me with no options to manage my severe pain & just didn't give a shit. He knew that I was in debilitating pain every day of my life; he saw with his own eyes the severity of my situation. And instead of continuing to prescribe the pain medicine that was the only reason I can get out of bed each day, he told me to go to the ER. I gotta let that go too, and it's an incredibly hard one to let go.
I am beyond grateful for the care of the new doctor, dr #3. He doesn't understand why my issues weren't handled FIVE years ago, and I don't fucking understand either!! The very first doctor (dr #1) who diagnosed my endo, she performed my first laproscopy with the intent to remove an ovarian cyst detected by ultrasound. She discovered the extensive endo & DID NOTHING. Instead, she referred me out of her practice to the less qualified dr #2. I had to fight my insurance company for over eight months to cover the surgery because dr #2 was not in network. Five years and three unfinished laproscopies later, I am referred to my new, competent doctor #3. Here's the main thing I gotta let go...dr #3 is in the same practice as dr #1. WHY THE HELL DIDN'T SHE JUST REFER ME TO HIM FIVE YEARS AGO??????????? It would have saved me five years of severe pain, countless hours of suffering, and thousands of dollars. Dr #3 asked this very important question during our first appointment. I hope he asks dr #1, who is still part of his practice, for a damn explanation. But that won't turn back time anyway.
See why it is easier said than done?!
For my own health though, I need to take the lessons learned and move forward. I need to thank God for my blessings and pray for my recovery after the next laproscopy, scheduled in five weeks. I can see a pain-free existence in my future, and nothing else really matters besides that.
Take a deep breath, and let it all go...
Thursday, April 1, 2010
I had my first, real, deep, intense, therapeutic, inconsolable cry the other day...well the first one since three months ago when my pain went from terrible to debilitating. Though the majority of the following song is not relevant, I wanted to share the "cry cry cry" with you because it is dancing around my head. If you ever want Ryan Adams and his Friends to sing to you while you cry, you can click right here.
At the very least, the children will make you smile while you cry cry cry.