Feel Good Fridays

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We made it through another week!

Today’s quote is by Marie Curie:

“Certain bodies… become luminous when heated. Their luminosity disappears after some time, but the capacity of becoming luminous afresh through heat is restored to them by the action of a spark…”

Why do I love this quote?  To me, it represents our passions in life.  We may be overwhelmed by passion for a particular subject or activity, but lose it for one reason or another.  It could be the topic no longer interests us, or that we had to “drop” it due to physical or emotional roadblocks.  Does that make us any less (fill in the blank)?  No.  We are still whole.  We still have “the capacity of becoming luminous afresh…”

This holds true for every aspect in our lives: a bad break-up, an unexplained sadness, the loss of a friend or loved one, a personal defeat.  We lose something, but are we any less?  No.  We may have a void, but we are still us.  We still have that ability to be full…to be luminous.

And at any time, our spark may return, either self-imposed or by the spark of another.  Ignite each other. Inspire each other.  Imagine the ripple effect.  Imagine the glow.

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Is there a link between Endometriosis and sexual abuse?

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**UPDATE: 2/4/16 : Please read https://bloominuterus.com/2016/02/04/my-two-cents-sexual-abuse-and-endometriosis/ for my research results

Time to get a bit personal with you…

I was molested by my grandfather for years as a young child.  My parents divorced when I was six.  I told my Mum when I was 8 and she literally uprooted our small family and moved us out of state, which caused a huge rift between my father’s side of the family and our family.  And I love her deeply for that.  I always will.

Last year Mum mentioned reading (or hearing about) a possible connection between childhood sexual abuse and Endometriosis.  I rolled my eyes, stated I didn’t want to give that man any additional power over my life, didn’t want to blame him for my disease, and dismissed it as crazy-talk. (I’m sorry, Mom…I know you’re reading this…).

At one of our recent support group meetings, the topic came up again.  Someone else had recently read a similar claim.  Which prompted one of our other women to say she had heard it, too.

Last night it was my pleasure to enjoy dinner with one of my local EndoSisters.  After hours of bonding, I brought up my sexual molestation.  I was saddened to hear that she was also abused as a child.  And she mentioned that there’s a book that discusses the possible link between sexual abuse and Endometriosis.  Which had me regurgitate my Mum’s conversation from last year…and the subsequent conversations with EndoSisters from our support group.

So guess what now?  I’ll be thoroughly digging into the scientific, medical, and laymen literature available on this topic.  I will find out what those communities are saying the links may be : stress, inflammatory reaction, hormones, defense mechanisms?

If you have read about this, please leave a comment with the source information so I can also read about it.  A quick Google search has brought up nearly a dozen studies on the topic, all of which I need to take my time and read.  And clear my head.  And breathe.

And I’m curious if the ratios of women with Endometriosis (1 in 10 women) and childhood sexual abuse trauma (1 in 5 girls; 1 in 20 boys – National Center for Victims of Crime) are so tightly-woven that they are possibly purely coincidental.  That there is no cause and effect relationship; but just a coincidence.

And I’m equally curious : what are the chances that you, an EndoSister, was sexually abused, too?  I do not ask this question to rip off scabs and expose old wounds…but I am flabbergasted at the amount of women in my personal life, with this illness, who have stepped forward and shared their traumatic experiences.  We are now stronger than our abusers.

I will be digging.  And I will be ripping my heart out and laying it flat open, filleted, for this one.  Interested? Stay tuned.  Want to share an experience?  Comment below.  We are in this together, on so many levels…

**UPDATE: 2/4/16 : Please read https://bloominuterus.com/2016/02/04/my-two-cents-sexual-abuse-and-endometriosis/ for my research results

Yours,

Lisa

 

Endometriosis Workshop Event Page

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For those of you who are in the San Diego area and are interested in attending the February 24, 2016, Endometriosis workshop by The Wellness Institute of America, here’s their Facebook event page.

https://www.facebook.com/events/802356243204078/

If you’ve already told me you’d like to go, I’ve added your name to our ongoing sign-in sheet.  Or you can feel free to contact Natalia directly to confirm your seat.  And RSVP on their Facebook event page.

See you guys in a few weeks 🙂

Yours,

Lisa

 

Press Release

Took a big step today and shared a press release with local television, radio, and print media.  Hoping to raise awareness of our disease in the San Diego area, as well as alert any Endo Sufferers in our area about our support group, the walk, and our little community.

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I am very excited and can only hope that someone picks up on this press release and publishes or broadcasts. I sent it to 7 local TV stations, 2 major local newspapers, 35 radios stations that reach our area, a wire service, and 21 online & local print magazines (SD Reader, City Beat, etc.). Even if they don’t respond, that’s perfectly okay.

I’ve never done anything like this before…I’m giddy!  I’d like to thank my Jim for his guidance during this process.

Feel Good Fridays

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We made it through another week!

Today’s quote is by former American President Ronald Reagan:

“There is no limit to the amount of good you can do if you don’t care who gets the credit.”

Ha. It’s perfect and so very true.

Have a wonderful weekend!  And go out and do some good.

Yours,

Lisa

San Diego Endometriosis Workshop

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If you’re in the San Diego area, save the date  February 24, 2016, at 6pm in Mission Valley.  The Wellness Institute of America contacted us due to our support group.  They offered to host a free workshop specifically targeted around Endometriosis.  They are the local chapter of a national non-profit organization (The Foundation of Wellness Professionals) and would like to donate their time and knowledge to our community.  Dr. Gerald Williams, who specializes in Natural Regenerative Medicine for women’s health, will be speaking. 

The details are still all coming together, but if you know you would like to attend (okay to bring a guest), please let me know.  I have a sign-up sheet and I’ll be updating my liaison at the Institute on a weekly basis.  Also, we have asked to make this workshop open to the public (as opposed to limited to our little group), so there will be a Facebook event page soon, which I will circulate to you if you’re interested. 

This is exciting!! San Diego is coming together as a whole to raise awareness for our illness. 

Yours, Lisa

Changing birth control pills

pillSo, here’s the news…

Thanks ObamaCare.  Due to changes in insurance coverage and expenses, my employer has changed my insurance plan.  It’s the same carrier, but the plan has altered slightly.  What does that mean for my coverage?

Thankfully, I still can see my same physicians, although my physician co-pays have all increased by about $10.  I’ve no clue how any medical procedures will be affected financially.  BUT what I do know : my insurance will no longer cover my Amethyst birth control.  Sure, it’s free.  Sure there’s all this legislation and praise about free birth control…but my insurance refuses to provide Amethyst anymore.

Instead, I’m going on a generic of my generic (Amethyst is the generic version of Lybrel).  What’s the name of my new birth control?  It doesn’t really have a name.  Emblazoned on the prescription box is “Levonorgestrel and Ethinyl Estradiol 90 mcg/20 mcg tablets.” That’s the name of my new BC.  It’s a tongue twister, and it’s the same dosage of my Amethyst pills…but…

Not all generics are the same.  Fortune magazine states, “The [FDA’s] definition of bioequivalence is surprisingly broad: A generic’s maximum concentration of active ingredient in the blood must not fall more than 20% below or 25% above that of the brand name. This means a potential range of 45%, by that measure, among generics labeled as being the same.”

I haven’t had my period since September, 2014.  I have been taking Amethyst since January, 2015.  I haven’t spotted. I haven’t had any break-through bleeding.  And best of all I haven’t had any terrible Endo symptoms.  I’ve had a few flare-ups, but nothing unbearable.

So today I start my new pill.  Last night I said goodbye to my last Amethyst pill.  Tonight at 6:00 pm, I’ll swallow this new tiny pill…hoping that my body won’t have to adjust.  Hoping for no raging hormones, no spotting, no periods, but most importantly : no Endometriosis symptoms.  It’s been wonderful having 99.9% of my life back.  Will see how my body adjusts to this new medication.  Hoping for the best.

What about you? Have you switched pills and suffered?

Thanks for reading. Today I am just venting because I’m worried.  Worrying accomplishes nothing and I was hoping by writing it all out I’d feel better.  I think it’s helped already 😉

Yours,

Lisa

Share your Story : Sarah

Sarah’s symptoms began when she was 13 years old…but her diagnosis not until she was 34! Why not? How is that possible?  It happens more than it should…curious? Read on, Dear Reader, read on.

Sarah’s Journey:  I don’t think I’ve had a single day where my female reproductive organs were active and NOT pissing me off. I got my period one day in summer when I was thirteen years old. And it just … didn’t stop. For the first year of my menstruating life, I bled for 25 days out of thirty. It was ridiculous, and led to me having anemia and needing fluids almost all the time. My well meaning GP at the time said my body was just “adjusting”.

Flash forward to September when I’m fourteen. I go to school, I come home, I have a snack. I’d been in pain all day, but that was ALREADY THE NORM for me. But this was different. I threw up, and ended up throwing up every ten minutes or so that whole night. The GP thought it was the flu, but my mom took me to the hospital. At fourteen, I ended up having my first ultrasound and my first pelvic. It ended up I had eight cysts on my left ovary, one that was grapefruit sized and had gone gangrenous. I had that out and was put on the pill. I’ve been on hormonal BC ever since. And the blood stopped. But the pain … never really did.

Once a year, I’d snap and I wouldn’t be able to take it anymore and I’d go to the hospital. Most of the time I’d have a cyst that had ruptured to go along with my pain, but when I complained it was constant, year round, they said it was probably in my head. That went on for years. I remember fainting in an undergrad class from the pain, I remember flunking out of school because I was so exhausted and in so much pain I just couldn’t. I remember taking a whole bottle of Advil in a week (one of the 200 count ones!) because dear god, nothing helped the pain.

And then, one day when I was twenty-nine, I went in for my fourth ovarian cyst removal lap surgery. When I woke up, and was wheeled to my recovery room, I was told the cyst was gone, and I had endometriosis. Then I was given some pretty pictures and sent home. The doctor told me that it would make my cramps worse. That’s it.

I ended up having to do a lot of research on endo myself.

I’ve had my appendix out because I had to go to the ER for endo pain and was told that it was probably my appendix. (I figured hell, either way, it’s not like I need the appendix, may as well be safe. It wasn’t infected.)

I’ve been in the hospital for weeks while doctors did CT after CT thinking it was gallstones. Colonoscopies – it must be IBS. Benzodiazepines- it must be all in my head.

I had a doctor tell me to my face that there was no way it could hurt this bad, that I was being a hysterical woman and my mother would be ashamed.

In 2013, I was hospitalized twice. I was in the ER, writhing with pain, fainting with it, seven times. SEVEN. I also think I gave up hope then.

In a desperate bid to have a better life, I moved to Chicago with my BFF. I’m happier here, but no less ill.

I was hospitalized in June of 2013, and the doctor that saw me said that he was pretty sure it was endo. He referred me to a pelvic pain specialist. We’ll call him Dick. Dick prescribed me nerve drugs, muscle relaxants, and to lose weight. He said that yeah, it was probably endo, but all that stuff would help. I’m sure you can guess what happened. It didn’t help. I went to get a second opinion. She was smart enough to realize that nobody had gotten a 100% definitive diagnosis of me having endometriosis. So she did a diagnostic laparoscopy.

Lo and behold, after twenty years of doctors saying I “probably” had endometriosis, she confirmed what we had all figured was true. She found that it was creating adhesions within my abdomen. Most prominently, my uterus was fused to my colon. I don’t know how to express how scary that is. Maybe caps will help. MY UTERUS WAS FUSED TO MY COLON.

So much for the pill controlling things, right? I’m currently gynecologist shopping, as my most recent gyne said that there was nothing more that gynecology could do to help me. He said that yes, I probably need another surgery, but he doesn’t want to do one now because it’s only been two and a half years since my last one. Right now I see a pain management doctor every two weeks because I take Norco on a daily basis (I take two of the 10/325 pills every four hours in case you’re interested). My pain management doctor is the only thing that keeps me from laying in bed and weeping all day because of the pain.

While I’m very good at my profession, I’ve been unable to hold down a job for more than a year because of endometriosis. Few employers are willing to let people work from home in my line of work, and they certainly aren’t interested in employees who might need to take two or three weeks off at a time because of pain issues. Even with my pain management, I’d need at least two weeks off a month. Plus, on my “good days” I’m still on Norco, which still makes me lethargic, sleepy, and causes me to slur my words. Not exactly employee of the month material. I’m currently waiting on a decision regarding a disability claim I’ve filed. Fingers crossed!

Words of Advice for Us: Listen to your body, not the advice of others. I’ve had so many people in my life tell me that the pain isn’t “that bad” or that I “just have a low pain threshold” or that I was being “hysterical.” Even if any of those things were true, I would still have a right to compassionate care and pain management, and you do too. You aren’t lazy. You aren’t just “bad” at handling pain. Your body is doing things that are awful; I’ve heard doctors compare endometriosis to having internal blisters that are always being rubbed open. That’s hellish. You are strong. You deserve to be heard. If a doctor treats you as if you’re a whiny child, find another doctor. You deserve respect and compassion, full stop.

The Last Word: The network of people with endometriosis is wonderful and supportive, and I’m so glad that everyone is so kind. We have a horrible disease, it’s true, but I am glad for the friendships I’ve made because of support networks. It’s a bright side. And thank you to Bloomin’ Uterus for these profiles. It’s very kind and a great way for we to read other people’s stories. It makes one feel less alone when we find stories we have in common, and feeling alone on top of endo is the pits.

If you wish to contact Sarah, you can follow her blog here.

Thank you, Sarah, for opening up and sharing her horrendous experience with us.  But, am so very glad that you’re living near your BFF, have found a great support network of EndoSisters, and are taking steps to (hopefully) feeling better.  Wishing you the best of luck with your disability claim.

 

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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.

Li’l Skully Charms

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As most of you know, we have our little Endometriosis Awareness Walk coming up on March 26, 2016.  And that we host a monthly support group here in San Diego.

One of our EndoSisters who comes to the group created these little yellow skully charms as part of her fundraising efforts.  Each charm is distinctly different in it’s own way (some have yellow beads, some have purple, some don’t have beads, but have a floral cap).  If YOU would like one, they’re $10 each.  No S&H charges (that’s not how we roll).

You can donate online at www.gofundme.com/endendo.  If purchasing one of these lovelies, please make sure to mention the skull charm in the comments of your donation.  But act fast…there’s only a few of these.

I have mine dangling from a chain on my rearview mirror, right next to my tiny yellow ribbon charm.  An EndoSister removed the charm clasp and created a necklace.  They can be clipped to cell phones, made into a pin, the possibilities are endless.

I know not everyone likes little skulls, but I know a lot of people do, too.  I’m grateful for Linda Lee’s talents and desire to help raise funds. And I thought I’d share these with you.

🙂