Feel Good Fridays!

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Okay, because I was out of town last Friday, I’m giving you TWO quotes today ūüôā

My friend and mentor recently shared a quote that I fell in love with, and I wanted to share it with you.¬† I’d never heard it before, but given who said it, you think I would have!

“Courage is being scared to death, but saddling up anyway.” ~John Wayne

And this one I found while scrolling through uplifting quotes:

‚ÄúYou do not need any more strength. You only need to realize how strong you already are.‚Ä̬† ~Vironika Tugaleva

So what are you going to do this weekend? Next week? Next month? The rest of the year?

I hope you are able to look within yourself, sense your inner strength and beauty, and move ahead full steam…with whatever you may have on your plate, or what you’ve been putting off, or what’s been hindering you, or what’s lurking in the shadows…Just close your eyes and go. You can do this.

Have a wonderful weekend.

~Lisa ‚̧

Blogs I’ve updated this week:

I added an Events Calendar!¬† If you look at the top right of your computer screen (not sure where it’s located on tablets and/or phones), you’ll see a new “Events” option. Click on that and it will bring you to our calendar of upcoming events ūüôā

Share Your Story: T.E.

 

T.E. was diagnosed with Endometriosis when she was 28 years old.  Now 31, she shares her story with us:

T.E.’s Journey: I was diagnosed with Endo around 28. I saw my gynecologist for painful sex and cyst rupture after sex and he recommended me seeing an infertility doctor for possible Endo. I saw the specialist and he said I did have chocolate cysts and suggested surgery to get a good look at what’s going on. I had the surgery; I did have lesions and my chocolate cysts were drained. I also had a low count of eggs at the time so I had to decide if I wanted to have kids now or never so I never started the pill after surgery.

Fast forward six months, I was back in pain and now till this day, I have had new symptoms arise. Hip pain and the bottom of my feet are new symptoms. I walk for a living so it’s been difficult. I still get leg pain, which is not even around the time of my period and mood swings. I also get lower back pain and severe cramps. My infertility doctor says he can’t do anything else for me so I have been trying other ways. I saw a holistic doctor and went that way and it did help, but the pain came back. I’m going to try acupuncture soon. Wish me luck!!

 

I want to send a special Thank You out to T.E. for being brave enough to share her personal story and struggle with us today.  Wishing you the BEST of luck with acupuncture!! 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.

Reader’s Choice: Small Endo, But Big Pain?

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One of our readers, Jocelyn, emailed me this question:

Hi Lisa,

Thanks for doing this! I was diagnosed with Endo in May 2017. After of course many ultrasounds, bladder scans, colonoscopies… you name it. The laparoscopy in May only revealed 2 very tiny cysts on my ovaries. My doc was able to get a tiny sample sent it off and then after much debate, they gave me the Endo diagnosis. My pain was very severe. I could barely complete normal activities without taking either 800 mg of ibuprofen every 2-4 hours, tramadol, rest, etc. With that being said, my question is even if the Endo is so small can it still cause a great deal of pain? I’ve heard women who have Endo all over their bodies. I tend to question myself because the cysts were so small. I apologize for the ridiculously long response. It’s just been very heavy on my mind. Thanks for listening and all that you do!

Best,
Jocelyn

~

Hi Jocelyn!

Thank you so much for responding!  I’m glad you received a diagnosis; helps to know that the pain isn’t normal!  AND your response was not ridiculously long at all.  So there! ūüėõ

To answer your question about heightened pain levels, even though your Endo is “so small”…it doesn’t matter the amount of Endo you have.  Pain is pain is pain.  And this disease can cause havoc!  I did a bit of research about this topic after my 2014 diagnosis and women with Stage 1 Endo (which sounds like what you may have) can have extreme pain…while some women with Stage 4 Endo (which is as bad as it gets) have little to NO symptoms or pain.  Isn’t that bizarre?  Some women with Stage 1 Endo have NO pain while some do…the amount of the disease found in your body DOES NOT dictate the level of pain.  The presence and ferocity of the pain of the disease is different for every person, regardless of their “Stage” level.  Do not let your “small cysts” devalue your pain or belittle your illness or suffering.  Never let anyone tell you otherwise.  If you’d like to read more about my research from back then, please check out https://bloominuterus.com/2014/11/19/endoinvasion-stages/.

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If you have an Endo-related question you’d like me to delve into, shoot me a note here.

Permission was granted by Jocelyn to use her name and publish this Q&A.  Hoping this Q&A session helps answer some questions that other EndoSisters or their support systems may have.

Endo & Nutrition Workshop in San Diego!

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Optimal Nutrition to Manage Endometriosis

Join us for a discussion on how diet and nutrition can best support those living with Endometriosis. Merritt Jones is an EndoSister, certified nutritionist, licensed acupuncturist and primary care provider here in San Diego. She is excited to share with you what she’s learned over the years about how nutrition can impact Endometriosis.

We’ll discuss:

– The connection between food, digestion and endometriosis

– Foods that reduce inflammation/reduce endo signs and symptoms

– Foods that may make endo signs and symptoms worse

– Tools to manage endometriosis signs and symptoms naturally

РThe emotional implications of nutrition for Endo (you don’t have to be perfect!)

– Much more!

Date:  October 25, 2017

Time: 6:00pm – 7:30pm

Location: Mission Valley Library (in their Community Room); 2123 Fenton Parkway, San Diego, CA 92108

If you’d like to come, please email me here. ¬†Space is limited. ¬†As usual, this is FREE!

If you’d like to share with others, we also have a Facebook event page: ¬†https://www.facebook.com/events/727045307488736

If you have a question for Merritt (even if you can’t attend), please feel free to¬†e-mail her confidentially at Merritt@JonesFamilyAcupuncture.com. There is no question too silly/personal etc.

 

Cataract Surgery has been Scheduled!

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Gigantic dilated eyes are the window to the soul?

Okay! Here we go!

Today I met with my ophthalmologist and we talked about my eyeballs.  I learned quite a few things today.

He confirmed that I do have two cataracts in my left eye. ¬†The first is a benign congenital cataract. One that I was born with. ¬†He cannot say if it has or hasn’t grown over my 38 years ’cause he didn’t know me when I was born, but it’s small and out of the way ūüėČ ¬†He did confirm it’s there and it’s sounds to be in the same spot it was when I learned about it 15 years ago.

The second cataract is the booger that’s been causing my vision to blur and see double. ¬†And continue to worsen and grow. ¬†My right eye is 20/20 and my left eye is 20/50…So my choices are: leave it alone and let it worsen and eventually have it surgically removed at some point…or don’t wait and have it surgically removed now.

I’m a gal of action, so … surgery has been scheduled! October 2!

I ALSO learned that my left eye is slightly lazy. ¬†Whua? He thinks that likely my left eye may have developed differently than my right eye because of my premature birth. ¬†I’m 38 years old. You think eye exams every two years of my adult life (and however many I had as a child) – someone would have said something at some point? ¬†Nah. ¬†Ha!

What does the lazy eye mean? Not much. My left eye is slightly off center; I may have some trouble with my left and right eye focusing together, my left eye may have to work a bit harder, etc. ¬†But it doesn’t mean much. ¬†It’s only a little lazy. ūüėČ ¬†When you Google it, it’s something something something brain gave more focus power to the good eye blah blah blah.

Anyway, I’m uber excited about ¬†my upcoming cataract surgery. ¬†I’m not expecting miracles, but I am expecting to be able to see slightly better than I can now. ¬†And that’s exciting.

My doctor/surgeon is an incredible man who explains things in awesome layman terms, has a great sense of humor, and I immediately trusted him.  We discussed options regarding surgical techniques and lense replacements and I feel we chose the best option for my eyeball, my age, and my budget.

I’m going with the standard surgery and a standard monofocal lens (aka; what the insurance covers!). ¬†My understanding from the consult: using a blade, my surgeon will slit open my eyeball, peel open the “envelope” (as he put it), and break my cataract into pieces using an ultrasound thingymobopper, then they suck out the broken bits. ¬†Then they’ll pop in a lens and *presto* – done. ¬†His hopes are that my vision will be restored to what it was when I was a 10-year-old kiddo. ¬†Wouldn’t that be nice? ¬†I’d be happy if it were just restored to what it was before 2015. Ha! ¬†Other options were a laser-assisted surgery (instead of a blade) and fancy replacement lenses that do a lot of things my eyeballs won’t need.

I’ve no real fears for October. ¬†In, out, and back to work the next day. ¬†So, I’ve called my insurance and *hopefully* figured out all of the co-pays…this will hopefully cost me no more than $700 out of pocket (funny; making it more expensive than my last excision surgery…)!

The bonus? ¬†My Mum may be able to come out and be with me for my surgery! ‚̧

BUT…what does this have to do with Endometriosis? Why am I sharing my non-Endo related news on my blog? ¬†First off, ’cause I can. Haha. ¬†And it’s an important piece of my life and I wanted to share it with you. ¬†Secondly, IT *is* Endo related:

  1. ¬†While the assistant was taking down all of my pertinent info and health history, we talked about Endometriosis. ¬†She has a few friends who have the disease, so I gave her my little Bloomin’ Uterus cards and invited her friends to join us for our support group meetings or just to reach out and talk. ¬†Every chance you get, talk about the illness – you NEVER know whose life you’re affecting.
  2. My doctor today mentioned that because I was born premature with a congenital cataract, it was very likely that my susceptibility to developing cataracts was higher than the Average Person. ¬†Combine that with six months of Lupron Depot (which some studies have shown may cause cataracts) and *poof* I believe I have my cause. ¬†Although there’s no way to truly ever know.

I hope that you’re all doing well. ¬†If you’ve followed my blog since last week and my incredibly painful days, please know that I am doing well once more. ¬†The pain has ceased (well, the backaches are still there, but meh…they’re not too bad). I’m still bleeding (yay period), but the pain is gone. ¬†And that’s a good thing.

I have a consultation with my gyno/surgeon in late September to discuss “options.” ¬†Brace yourself.

I hope your’e doing well!! ¬†Much love to you.

 

 

Update from earlier this week

Dear Readers,

Well, I’ve popped at least one Naproxen Sodium every day this week. ¬†Today, the pain was so bad I tossed back a Tylenol 3 with Codeine and chased it with a Zofran. ¬†It even hurts to take a deep breath and I feel like my entire torso has swollen up and is tight.

10:30am…popped the pills

4:10pm…the pills are wearing off. ¬†The pain is coming back and the nausea from the Zofran is here full-force…So, I called my doctor for a consult and ultrasound. ¬†I remembered that he was going to be out of the office for a while this & next month, so figured I’d be seen in late September or October…

BUT, his incredible staff made an awesome suggestion: the other healthcare provider who works in his office can get me in TOMORROW at 9am for a consult and ultrasound!!! I adore Mara and trust her nearly as much as I trust Dr. K! This will be our first ultrasound together, and her first hands-on experience with my septated canal and dual cervix! It’ll be a party down below!

So, here we go.

I’ll keep you all updated.

Which also means my “Feel Good Fridays” post for tomorrow will be published later than usual.

Standby…

Love, Me.

PS – I HATE this freakin’ disease!

When do you decide … it’s time?

So, I have a very important question for you, my Readers. ¬†I value your input and feedback. I always have. ¬†But now I need your advice…

When do you know when it’s time to go back to your doctor and let them know that your pain is returning, that you’re afraid your Endometriosis is back with a vengeance, that it may be time to begin pursuing yet another surgery?

Yet, here I sit afraid that it’s still all in my head. ¬†That I’m blowing my pain out of proportion. ¬†That I’ve lived without it as intense for months and am now not used to it and am labeling it as large, debilitating pain.

And, as I type that, I know how silly it sounds…because I honestly feel that I’m not blowing it out of proportion. ¬†That I upgraded from Naproxen Sodium to Tylenol 3 with Codeine because the pain is getting that much worse. ¬†That I sleep with a heating pad on, just so I can try to sleep…and I’m not even on my period (yet). ¬†I’m due any day…

These thoughts keep me awake at night.  And greet me in the morning.

I have so many things that I WANT to do. ¬†I want to plan and enjoy a one-week honeymoon with my husband. ¬†I want to go to Burning Man next year (which requires all of my vacation time). ¬†I want to visit family in Arizona…but here I sit three-quarters of the way through 2017 and I’ve only got two vacation days to my name. I’ve used up the rest and all of my sick time on calling in with cramps, or taking a fun 3-day weekend here or there to be with my husband and friends. ¬†Two vacation days…for the rest of the year.

Definitely not enough for a surgery in 2017. ¬†And I don’t want surgery in 2018 because I absolutely want to return to the Desert for two weeks with loved ones.

So I throw my hands up in the air…and analyzed my pain journals for this year. ¬†Want to look at them with me? ¬†Each month recently, my pain has gotten progressively worse, particularly on the right side…

2017…my pain journal. ¬†The red shapes indicate the location of the pain and/or cramping. ¬†BM stands for Bowel Movement. ¬†GI is gastrointestinal. The #/10 stands for the severity of pain, on a scale of 1-10.

January:

jan

February:

feb

March:

march

April:

april

May:

may

June:

june

July:

julys

August (thus far…):

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If you were me, would you call your doctor and at least request a consult and an ultrasound?  And go from there?  Or would you just suck it up and continue to pop pills and lose sleep and *hope* it goes away?

I know it won’t go away…it’s not what the disease does…

But I hope it does.

And I want to cry just typing this.

 

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?

 

 

 

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