Feel Good Fridays!

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Well, we made it through yet another week.  It’s been a busy and whirlwind one for me; how about you?

So to celebrate the end of a crazy week, I’ll be heading to Palm Springs for some poolside R&R with some great friends I haven’t seen in a while.  Which inspires today’s quote:

“Relax, Recharge and Reflect. Sometimes it’s OK to do nothing.” 
― Izey Victoria Odiase

Find yourself some “do nothing” time.  Relax. Take a deep breath.  Pamper yourself. Take a nap.  Enjoy the weekend!!!!

~Lisa

What recovering from laparoscopic surgery was like for me

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So, September 21, 2016, was my second Endometriosis excision surgery.  It was done by robotic-assisted laparoscopic surgery.  What does that mean?  My surgeon sat at the controls of console and directed teeny tiny robot hands inside my belly.  I had forgotten a lot of the recovery process from my 2014 surgery, so decided to take notes every day…so that way if I ever go back in, I sort of know a timeline!

I meant to publish this a long time ago…but, well…the dog ate my homework?

A “brief” little note – I tracked my pain, symptoms, diet, milestones, and whatever for a week, but as of today (8/16/17) I could not find the rest of my notes.  So, we get four days.  And I’m most certainly going to refer to this if I ever have to go back in for another surgery…

 

Day One: Wed, 9/21/16

Shortly after getting home, I was helped into bed on an incline of pillows.  Had immediate right and left shooting shoulder pain (10 out of 10).  Did a little bit of screaming.  Removed the pillows to see if lying flat would help…made it worse.  Did a little bit more screaming (still not as bad as my 2014 surgery).  Mom and Jim danced around the house trying to find the best solution for my sleeping arrangements and it turned out to be the tall-back computer chair, a pillow on the seat, a pillow on the back, the ottoman pulled close, a pillow on the ottoman.  Once I was seated, another pillow behind my head, and a pillow tucked underneath my legs (between the ottoman and the seat) to support my knees.  Quite the plushy palace…little did I know it would be my bed for the next three days.

6:15pm, Percocet.

6:20pm, GasX

9:05pm, vomited (clear bile) in the toilet on all fours.  Not an easy feat. Note: cool washcloth on bare back is heaven when hurling.

9:26pm, lower ab pain (3 out of 10) and lower back pain (5 out of 10)

9:40pm, crackers

9:45pm, Naproxen Sodium

10:20pm, lower rib pain (3 out of 10)

10:45pm, lower rib pain (2 out of 10)

10:55pm, nausea, but no vomiting

11:15pm, GasX

I didn’t make any records of sleeping.  I know we did a lot of walking around that first day.  I also remember it not being as horrific as my first surgery.  And all but two of the notes are in my own handwriting, so couldn’t have been that wonky…

 

Day Two: Thurs. 9/22/16

1:20am, walked around

5:30am, incision pain (7 out of 10) woke me up, walked around, took Percocet

5:35pm, GasX

6:25am, walked around

6:50am nausea, but didn’t vomit

7:05am, ginger turmeric tea to help with nausea, took a stool softener

7:45am, vomited (bile) in toilet on all fours

7:46am, vomited (green liquid) in toilet on all fours

8:30am, ate small portion of scrambled eggs

8:35am, right lower rib pain (3 out of 10), lower back pain (4 out of 10)

8:37am, ate butternut squash soup

11:37am, GasX

12:00pm, nausea without vomiting

3:15pm, ate a few raspberries

3:25pm, ate crackers, belly button pain (2 out of 10), right lower back pain (4 out of 10), right lower rib pain (3 out of 10)

4:35pm, right hip pain (6 out of 10)

6:05pm, right hip pain (8 out of 10), left hip pain (5 out of 10), lower rib pain (6 out of 10)

7:10pm, Zofran and ate tomato soup

7:40pm, Percocet

7:42pm, GasX

9:15pm-11:45pm, good sleep

Day Three: Friday, 9/23/16

1:30am, left hip pain (7 out of 10)

1:45-3:00am, sleeping

3:30-5:05am, sleeping

5:10am, belly button pain (5 out of 10), left hip pain (5 out of 10), deep breaths and  yawning hurt lower ribs (5 out of 10)

6:55am, lower rib pain (6 out of 10)

7:00am, GasX, stool softener

7:05am, ginger tea with honey and coconut oil

7:30am, left hip pain (8 out of 10)

9:00am, ate 2 scrambled eggs

9:10am, ate handful of blueberries

9:25am, Naproxen

11:05am, right hip pain (7 out of 10), upper back pain (4 out of 10)

11:30am, ate soup

12:20pm, ate crackers

1:00pm, GasX

2:00pm, lower ab pain (3 out of 10). Shifty gas or poo?

2:15pm-4:30pm, nap

4:45pm, ate a few blueberries

5:00pm, my first fart (no pain)!

6:10pm, ate tomato soup with crackers

6:35pm, stool softener and GasX

7:00pm, lightning bolt pain at belly button (9 out of 10)

7:50pm, lower right rib pain (6 out of 10)

7:55pm, left shoulder pain (5 out of 10)

8:20pm, lower rib and side pain (8 out of 10)

8:30pm, ate crackers

9:30pm, right hip pain (9 out of 10), but had to pee

9:40pm-2:30am, sleep

Milestones: Able to sit and stand alone.  Able to fart!  Able to lay flat!!

 

Day Four: Saturday, 9/24

2:30am, woke to (do something?)

2:30-4:45am, sleep

4:45am, woke up with cat walking on belly button (10 out of 10)

5:00am, Naproxen Sodium

5:25am, GasX

6:00am, ate crackers

6:40am, farted with no pain

6:45am, stool softener

7:30am-9:05am, nap

9:10am, farted with no pain

9:20am-11:00am, nap

11:25am, lower ab pain (4 out of 10)

11:45am, ginger tea with honey.  Lower ab pain (2 out of 10)

12:10pm, ate tomato soup with crackers.  Took GasX.

12:15pm, right ab pain (6 out of 10)

12:25pm, farted with no pain

12:35pm, lower right ab pain (4 out of 10)

1:05pm, lower right ab pain (6 out of 10), farted with pain (6 out of 10)

1:07pm, Naproxen Sodium, ate crackers

2:00pm, lower right hip pain (5 out of 10)

2:10pm, belly button pain (8 out of 10)

3:10pm, left ab/incision pain (8 out of 10)

3:15pm, GasX

3:47pm, left lower hip pain (8 out of 10)

3:50pm, left ab pain (8 out of 10), lower back pain (6 out of 10)

Milestones: Showered alone.

 

So at least I know these things:

  1.  Expect that shoulder pain when I lay down flat (this happened with my first surgery, too)
  2. Eat things nice and easy.
  3. Don’t expect a lot of sleep.  It may take three days before I can lay down flat.
  4. And I DO remember this – it was seven days before I pooped…and needed the assistance of a doctor-commanded enema.  All the stool softeners and easy diet and lots of water weren’t enough to combat the constipation-inducing meds…*sigh*
  5. And most importantly: don’t be alone for the first three days in case I can’t sit/stand by myself.  This includes using the bathroom *double sigh*

What did you learn from your past recoveries?

 

 

 

Calling all photography enthusiasts!! (Pro & Amateur!)

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So, I did a thing 🙂  I signed up to be a leader for the 10th Annual Scott Kelby’s PhotoWalk. A what??

Once a year (October 7, 2017 for this year), people from all over the world will step out into their communities, get together, walk around, and take photographs!  And this is their 10th year doing it!

I love photography. I may not know what I’m doing (I really should take a class), but I absolutely love capturing and creating.  I used to have a digital camera (Olympus E-330), but that took a crap and now just shoot with my 35mm Minolta X-G1.  Love it! Wanna see  some my work?  Click here.

I’m so excited!  I’ve chosen the Wilderness Gardens Preserve here in San Diego County.  I haven’t been in years, but it was a beautiful location that needs to be embraced and shared. 🙂  There’s room for up to 50 people to join the walk, it’s FREE, and it gets people out and about and snapping photos!

This year, they’re supporting The Springs Of Hope Kenya Orphanage, an organization that feeds, houses, educates and empowers young orphans.  Which is really cool – people can just donate funds, OR buy a t-shirt to wear to the walk.  All proceeds earned from t-shirts sales are donated to Springs of Hope.

There’s a fun little competition, too, where each photographer gets to submit one photo for a chance to win some nifty prizes!

I don’t know why I’m so tickled pink about this.  I get to get out, make new friends, hang out with old ones, snap photos like a crazy person, and enjoy the great outdoors of a beautiful location.

Want to come?  Or want to find a walk in YOUR area?  Click this link!  Want to sign up to be a leader for one if there isn’t one in your area already?  Follow the same link and click on “Lead a Walk,” and apply!  It’s easy! And will be so much fun!

And I can’t wait!

Feel Good Fridays!

Friday! Another week has passed us by!

The concept of today’s quote is something I hold near and dear.  Years ago when I was a child, my mental health counselor had me draw something. Anything.  So I drew a beautiful rose sprouting out of a pile of poop, with flies and stinky squiggles.

She told me that I was that rose.  I had gone through foul, horrible, unspeakable beginnings which helped shape me into who I was: a beautiful, strong, smart, and worthy teenage girl.  I’ve held onto that moment ever since.  It’s helped me cope with my childhood sexual abuse and many things over the years.  So stumbling upon today’s quote pleased me:

“Whenever you should doubt your self-worth, remember the lotus flower.
Even though it plunges to life from beneath the mud, it does not allow the dirt that surrounds it to affect its growth or beauty. Be that lotus flower always. Do not allow any negativity or ugliness in your surroundings destroy your confidence, affect your growth, or make you question your self-worth.” 
― Suzy Kassem

Remember, shit may happen, but allow it to feed you, strengthen you, enable you.  Grow into that beautiful blossom.

And have a wonderful weekend.

Love, Lisa

 

Blogs I’ve updated this week:

Endometriosis on Your Skin – added an August 2017 study of a woman with a bleeding lump in her belly button.

Natural Products I’ve Fallen in Love With – added another natural deodorant.  This one doesn’t use baking soda, which I unfortunately learned is too much for my sensitive underarms.

And we have lift off!

 

Yesterday, I was able to pay for and pick up the permit for the 2018 Bloomin’ Uterus Endometriosis Awareness and Support Walk! YAY!

So now comes all the fun stuff.  Getting the word out!

I’ve created the walk’s registration page:  https://bloominuterus.com/2018-endo-walk/

I’ve also added a Facebook event page: https://www.facebook.com/events/706672712871877/

I’ve emailed all of last year’s attendees.

And put it online with Spingo to spread the word through local online media here in San Diego.

I’ve got to order more Bloomin’ Uterus buttons in case we get any donations in 🙂  I’m all out!! *double yay!!*

If you’re in the San Diego area, or know someone who would be interested in attending, please feel free to share the links and come!

I’m sooooo excited!  It’s been several weeks trying to pull together the permit paperwork, the event insurance, and the budget, but the hard part is done!!! ❤

I’m SO excited!

Feel Good Fridays

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Happy Friday!

This week has been a tough pain-week for me.  A few good days, but a lot of bad ones.  So here I sit, having cancelled my plans for this weekend, wallowing in my self-pity.  Trying to find the good in it.

The good?  Knowing I cancelled plans and will honor my body. Rest is a necessity, especially in times like these.  Acknowledging this helps my little pity-party dissipate a bit.

Today’s quote is by a man most of you don’t know.  I work with him in the Forest Fire Lookout Towers, and he is my partner for this Saturday, whom I just cancelled on.  This was his response to my needing to cancel due to my ongoing Endo pain and medications:

“Okay, charge your batteries.” ~Ramon

Something so simple, so perfect, so right on point; it lifted my spirits immediately.  Ramon gets it.  Sometimes you just need to stop what you’re doing and rest.  And charge your batteries. ❤

I hope you’re able to find rest and shelter when you need it.  And relax, or try to.  Honor your body when you need to.  Sleep. Rest. Do nothing.  And be okay with doing nothing.

Have a great weekend! ~Lisa

Cataracts? …

So in 2015 I was told I had developed a cataract, and my doctor thought it may have been due to my BC or Lupron Depot. In 2016, I went for another check-up, the cataract had grown a little bit, but it wasn’t bad enough for surgery. Yesterday, my doctor confirmed that my cataract has doubled in size (thus causing the blurry and double-vision I’ve been experiencing) and referred me to an ophthalmologist to discuss cataract surgery. Again, he stated that he believed it was due to my Lupron Depot. In 2015, I did research on Lupron and cataracts. Did you know it may increase your chances of developing a cataract? Perhaps it simply developed as a fact of life…but t the timing of it all (just a few months after my last Lupron Depot injection) makes me think otherwise…

Bloomin' Uterus

CataractSo today I had my two-year eye exam.  You know: you go in ever two years to have your eyes checked and your eyeglass prescription updated.

About 8 years ago I learned that I have a benign cataract in my left eye, located just to the outside of my pupil.  My doctor back then told me it’s benign, it doesn’t grow, it just sits there a casts a shadow.  However, it’s not visible to me, and it will never affect my eye sight.  She surmised I was born with it : it may be due to my premature birth (I was 3 1/2 months early) and have likely had it my entire life.  Every two years since, I’d been told by the next doctor that I had a benign cataract on my left eye, and that it was just sitting there, doing nothing.

Two years ago, I went in for…

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New Case Study: Endo … in the buttcrack

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A study published online in June 2017’s edition of the Journal of Gynecology, Obstetrics and Human Reproduction discusses a case of Endometriosis in a very peculiar and very extra-pelvic location: the buttcrack! (You can read the entire article here).

A 24-year-old woman in France went to her doctor because over the past 2 years, a spot in her buttcrack would bleed during her period. She also suffered with painful periods, painful sex, diarrhea, and constipation. Upon examination, her doctors found a 3mm blue nodule in her buttcrack.  They immediately suspected cutaneous Endometriosis because of her pain, symptoms, and the fact that it bled during her period.  An MRI seemed to confirm their suspicions, but the patient refused excision of the lesion and no biopsy was conducted.  Instead, she opted for hormonal treatment.  Her choice of treatment offered her some relief.

They authors stress that any blue-ish nodule with similar symptoms be suspected of Endometriosis.  And they also stress the uncertainty with theories on how it ended up…there.  A very interesting thing…and just one more weird place on the body that it can manifest.

 

Resources:

Furet E, et al. Spontaneous intergluteal cleft endometriosis. J Gynecol Obstet Hum Reprod (2017), https://doi.org/10.1016/j.jogoh.2017.06.001

~ Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 😉 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa

Share Your Story: Stephany

After suffering with horrible periods and cramps since 13 years old, Stephany was 31 years old when she finally received answers: her Endometriosis diagnosis.  Two years later, she shares her story with us.

Stephany’s Journey: I was 13 the first time I had a “bad cramp”. From then on they never went away & just got worse. I would double over in pain, movement in general while having a cramp just made it worse like a nerve being shocked in my abdominal area. I would just have to stay still until the cramp passed. I would ask to stay home from school during the first day or 2, and luckily a few times my grandmother let me. I tried things like Midol & other off the shelf pain meds but they didnt do a damn thing. It was like I just ate a skittle to try to manage my cramps, no relief.

When I was 14 we went to a doctor and talked about my cramps and I was prescribed Ponstel. It’s a prescription pain medication specifically for menstrual cramps. It worked great and I just stayed on it until a couple of years ago. But over the years my cramps were getting worse, and the medication wasn’t always helping. I started taking a double dose of it on the bad days just because it was the only thing that helped. That was against my doctor instructions but I HAD to ease the pain.

I missed work at times and asked to go home because I just couldn’t walk without that shooting, stabbing pain with every movement. My managers gave me a hard time about it because they didn’t think it was “that bad” and I got wrote up for these occurrences. It came to a point that they sat down with me in the office and talked about how I needed to get this under control or I may loose my job due to my attendance. But I couldn’t help that I needed to be off a few days out of the month…I wished they could understand it was real.

At age 31 I went to the doctor about pain in my ovary area & I couldn’t have intercourse without pain. This was taking an emotional toll on me because I felt inadequate when it came to my husband. Now to clarify he has been nothing but wonderful, understanding & supportive, this was just my own feeling about the situation. The doctor checked me out in every way possible, did ultrasounds, exams, gave me medication, all that he could think of…nothing changed. He did find that my left ovary was 3 times the size it should have been because it wasn’t working properly, which explained the ovary pain. He put me on birth control to help regulate that issue & it worked for a year. Except that I kept ending up with multiple infections that added to my annoyance!

I asked to be refereed to another doctor. That was the best thing ever. This doctor asked me a bunch of questions id never been asked in relation to my pain. Did i have migraines? For how long? When did the cramps start? Did i always have a heavy period? He asked about my ovary issues. During that first visit this doctor told me he believed I had endometriosis and was scheduling me for a laparascopic surgery. Laparoscopy is the ONLY WAY to 100% confirm a woman has endometriosis. It does not show up on x-rays or ultrasounds.

When I woke up from surgery the first words out of my mouth were “did you find anything?” Because I had to know that there was some reason for feeling this way! I had to know there was something wrong and it wasn’t in my head! What this doctor found was in his words “one of the most severe cases of stage 4 endometriosis” he’d ever seen. My abdominal organs were so covered in endometriosis tissue that they were knitted together and had to be separated. My right ovary had been destroyed, and he couldn’t separate my uterus from my rectal area due to possibly damage to those muscles which would result in me needing to use a colostomy bag. But I was relieved, I had an answer, I knew what was wrong with me. I was going to need another surgery though.

But first I had to take a 6 month treatment that put me into a medical menopause to help “dry up” the endometriosis. Estrogen feeds endometriosis & makes it grow, so he needed to stop the growth before he old attempt another surgery. He told me that so much damage had been done that I had been rendered infertile and he recommended a hysterectomy. He said that after seeing my insides that he believed I had had this since I was about 13. Those first cramps I had were the start of my endometriosis.

It took 4 doctors, from age 13 to age 31 to figure out what was wrong with me. And then the damage had already been done.

I’m just finishing my last month of treatment and having my hysterectomy next month & I just pray it all ends there. My biggest fear is still having pain after. Because despite common belief, endometriosis can still come back after a full hysterectomy. There is no cure. This is why I blow my Facebook up with information on this disease, I don’t want ANY WOMAN going through the unnecessary.

Words of Advice for Us:  Trust your body and make yourself heard. Don’t settle for the doctors explanation, know yourself.

If you wish to contact Stephany, you may email her here.

I want to send a special Thank You out to Stephany for being brave enough to share her personal story, struggle, and victories with us today.  Good luck with your upcoming hysterectomy!!  Please keep us posted on your progress, and if you need anything before or after your procedure! We are family!! ❤ You are a beautiful, brave, and strong woman.  Thank you!!!

 

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And if YOU would like to share your story, you can do so by clicking here.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.