Feel Good Fridays

Tattoo of Ad Astra Per Aspera

Today’s quote is a bit odd in its origin.

It’s a tattoo on my back. It’s the state motto of Kansas. It’s engraved on a plague at the Apollo 1 launch site, honoring those who fell. It’s used on Pall Mall cigarette packages.

What the heck is it and what does it have to do with Endometriosis???

“Ad astra per aspera.”

Many years ago (yes, before my Endo diagnosis), a friend helped me find myself once more. I had been lost and floundering and he pulled me out of a deep, dark pit. He came to visit for the weekend to make sure I was okay. Before he left, he wanted to make sure I remembered our long talks, our soul searching, and our discoveries.

It was to be memorialized in a tattoo. The only condition was whatever phrase we both chose, it had to be in Latin. So we scoured the internet for our independent phrases. And I found this one: Ad astra per aspera.

I’d seen it translated in two ways:

  1. To the stars through difficulty; and,
  2. Through thorns to the stars.

And I knew I had to have it.

When I was a little girl, I was molested by my grandfather on numerous occasions. While going through counseling as a young teenager, my counselor would have me draw and she’d analyze my drawings. One day, I drew a rose growing out of a fly-covered pile of poop. She reminded me that something beautiful could grow out of the worst, most disgusting, conditions. And that I was the rose.

The phrase reminded me of that rose. It encompassed my sexual abuse, my divorce, my losing myself. I could – no – I WOULD rise up. Through thorns to the stars!

And every time someone asks me about that tattoo, I have a renewed sense of strength. I can, and I will, rise to the stars.

And it’s made moreso relevant because of my Endo diagnosis. Through thorns, through difficulty, through a fly-covered pile of shit – we continue to reach up toward the heavens, the stars, to beauty and vast possibilities. Yes; that means you, too.

You are beautiful. You will endure. And you will flourish.

Always remember that.

Love, Lisa

…and to that friend from many moons ago, thank you. You know who you are…

Blogs I updated this week:

Food Grade Hydrogen Peroxide – added a 2019 study of a 26-year-old woman who used a hydrogen peroxide enema.

Share Your Story: Zoe

Zoe, a brave EndoWarrior, shares her journey with us today…even while she has another surgery pending. We wish you all of the best of luck, Zoe!!!

**

I started my period by having waterfalls for periods with no regularity from age 13 but was put on the pill to manage that at age 15 and that worked. I from my teen years thankfully had no interest in having children. I am not a career woman either, I just don’t get the clucky feeling other women get when they see kids – I get that feeling when I see animals instead so I have fur babies.

The symptoms that brought me to the surgery table in April 2016 (age 33) were intense cramping, sweating and then diarrhea after sex (sexy I know!) I also had very rare cases of period pain that felt like a longer lasting version of the pain I got after sex, other than that my period pain was usually manageable. I did find relief from the symptoms after the recovery of my first surgery.

It took me a very long time to get taken seriously by doctors about my symptoms and what were causing them. I saw a gastroenterologist (it must be your ulcerative colitis), a rheumatologist (maybe it’s something to do with the lupus) and then finally a gynaecologist about it. I was given an ultrasound at a regular ultrasound place and this was my first time having the probe go you know where! The ultrasound showed nothing, which I know now is pretty common as ultrasound technicians need to be specially trained here to look for endo and even if they are trained they can see only the deep infiltrating endometriosis (DIE) and adhesions.

I was put on a public waiting list to see a gynae about my symptoms and they advised me of the laparoscopic diagnosis and removal process, I said I wanted the surgery. They saw me again in another 3 months just to be sure I still wanted the surgery and then I was put on a wait list for the actual surgery. So all in all, first enquiry through to surgery it took 15 months for me to be on the operating table!

The surgery found that I had stage 3 endometriosis and all lesions were removed, I was also found to interstitial cystitis in my bladder (they also sent a probe into my bladder). They put a mirena in to control the return of the endo hormonally and I was on my way – albeit in a lot of pain that day; from being on the operating table with a breathing tube for 3 hours – I had no idea how raw my throat would be and how much it would hurt! having only had short surgeries in the past.

As I mentioned I got relief from these symptoms, I also eventually had no period because of the mirena (OMG best thing ever!)

From mid-2017 I started to get decent period cramps however for a couple of days every few months then it became monthly then fortnightly, then weekly then half the week until by August 2018 it was almost every day and then it WAS everyday. At the end of 2017, I asked my GP to refer me to a gynaecologist, my GP referred me to the gynaecologists at the local hospital (I had moved to rural Australia by then).

The gynaecologist looked at my history and saw that I had stage 3 endometriosis in the past but still did the usual “are you sure it’s not your ulcerative colitis?” so off I went to my gastroenterologist and described my symptoms, he confirmed that my ulcerative colitis would not cause new symptoms like this and my very recent colonoscopy showed the ulcerative colitis was very mild at the moment with the medication that I am on for it keeping it under control. So back to the gynae I went, the gynae agreed that it might be time for some more endo excision surgery but first he wanted me to see one of those ultrasound technicians that are trained to see endo. I asked why and the gynae said because he does not have the skills to excise stage 3 or stage 4 endo so he would need to send me to the city hospital if there is deep infiltrating endometriosis (DIE). This meant that I could not be placed on any surgery waiting lists until the scan results were in GRRRR. So off I went on an hours drive a couple of weeks later when I could get the appointment with this ultrasound place and I do recall that he (the Dr doing the ultrasound) noticed something on my bowel but he said to me that he was unsure whether it was endometriosis or scar tissue from my previous surgery. Either way the results of the ultrasound were nothing related to deep infiltrating endometriosis (DIE), the only finding listed was that my left ovary had limited mobility.

I had pain everyday by this point and whereas the period pain was mostly in my legs to begin with, now it was mostly in my lower back and felt like period cramps only all the time! The cramps got worse when I needed to poop too! And after I pooped the extra pain hung around. I took more than the recommended dose of paracetamol aka Tylenol because the maximum dose didn’t cover me for 24 hours and due to my ulcerative colitis I am not allowed to tale NSAIDS which is what most people use for period pain.

So I waited 4 months on the waiting list to get my surgery at the local hospital and a replacement Mirena iUD and when I woke up I swear that I had some kind of convulsion and then when I (still groggy) spoke to my gynae he said that he had found that my right ovary was stuck to my uterus which he had freed up and also (I thought he said) he removed a cyst on my ovary. He had also found that my uterus and bowel were stuck together and that I’d need a colorectal surgeon (in the big-city hospital) to separate them. 

I went into the recovery area of the day surgery unit and asked them if I had some kind of convulsion when waking up, they said that I didn’t and then they said I could leave. I had no information on my surgery other than some generic pamphlets on the type of surgery I had; so I asked the nurse to give me an operation report and she checked and came back to me saying that the gynae has already spoken to me and told me what happened so I didn’t need anything other than the pamphlets to go home with. I argued that I was still doped up when the Dr spoke to me and then I asked if they were  going to send me home with pain meds and the nurse said that they don’t usually but that she would check. When she came back, she had a prescription for pain meds and said that she will request a wheelchair and someone to push to get me to a car (which my partner was driving). It took about 15 minutes for a wheelchair to arrive and in the meantime I was approached by one of the doctors who attended my surgery and I asked her and received an operation report.

Once home, I decided to indulge by taking the maximum dosage of my codeine paracetamol pain killers, I had my partner caring for me and then my auntie so I had not a care in the world! I also took degas and made sure I had lots of cushions on the bed to lift me up as well as maternity undies so they were nice and loose on my wounds. I was still hunched over from the pain when I walked but I felt pretty floaty and a-OK. I didn’t poop or feel like I needed to poop for 7 days or so and then suddenly, I needed to poop but it wouldn’t come out! It was sticking out of me and I could see that my whole genital area was stretched by it but the poop appeared huge and was stuck. I spent 3 hours on the toilet – afraid to push hard for my stitches and internal surgery wounds. I called nurse on call who said to wait it out (IT HAD ALREADY BEEN 3 EXCRUCIATING HOURS) then I called the ambulance and they wanted me to speak to a Dr about whether I required an ambulance or not. While I waited for a call from their Dr I felt a huge wash of nausea and needing to poop so I sat  on the toilet with a bucket in case I puked and my body did an automatic huge push and pushed out the obstruction in my bowel. It was a couple of minutes later that the ambulance Dr answered the line and I let them know that it had sorted itself out. This is a warning about opiates – take stool softeners with them!!!

The period pains hadn’t diminished and I had to wait 2 months to see the gynae again so I put into motion the referral process to a big-city gynae through my GP. Initially I was referred to the closest big-city hospital but I never heard back from them even though when I called them they told me that they had received my referral. My doctor later suggested that she refer me to a private gynaecologist that I would need to pay for but the surgery itself would be via the public system (=free) so I agreed and my GP got her personal mobile phone out and started calling people that she knew in the medical industry to find a gynae that could do my surgery at a public hospital. My GP eventually found the gynae who is going to do my next surgery ( I think that she was sick of seeing me every week for tramadol prescriptions!)

I saw the gynae that did my surgery in 2018 for a follow up in late January 2019 and let him know who I had been referred to and requested a support letter for me having a hysterectomy on the next surgery which he gave me as he believed it would help my symptoms as well as knowing that I did not want kids. He also wanted to check my Mirena to make sure that it was in place properly and alas he could not find the strings! I then had to do a pregnancy test (negative thankfully) and another ultrasound. This ultrasound found my Mirena where it should be but somehow the strings had gone AWOL and it also found that my left ovaries were immobile (again as with the last ultrasound). I had a follow up with the gynae and asked him about why he found disease in my right ovaries yet the ultrasounds said that it was always on the left. My gynae said that ultrasounds are not as accurate as surgical diagnosis.

In between these appointments my GP moved from the rural doctors surgery so I had another GP and this GP specialised in womens health (woohoo!) This GP suggested that I go off the tramadol and onto Lyrica instead and I have been on this ever since (along with the max dose of paracetamol/Tylenol).

I saw the gynae that I was referred to on the 27th of February and it turns out that he was the very gynae that did my first surgery in 2016! We together agreed that the best approach for me seeing as I am now 35 years old and still do not want kids is to have a hysterectomy during the surgery. The gynae offered to give me drugs to shut down my ovaries until surgery (which should stop my daily pain) but I declined because I did not want the menopausal symptoms. The gynae asked that I get another ultrasound at a clinic in the city to check how deep the endo is into my bowel which would therefore determine whether he needed a colorectal surgeon at the surgery or not (depending how deep it is). He also informed me that if they do any kind of bowel resection, I will need a stoma (colostomy bag) – which I was really dumbfounded about until he explained that it was due to all the immunosuppressing drugs that I take for ulcerative colitis and lupus. The gynae also let me know that he believes all the Autoimmune disorders I have (lupus and ulcerative colitis) are related to the endo and interstitial cystitis (which I am still not sure what that is other than perhaps endo of the bladder?) The gynae agreed that Lyrica was a good choice for my pain and told me that even after the surgery I may need to take it and to see a pain clinic. He said it was because I had been in constant pain for so long, my nerves are hypersensitive and probably won’t realise that the pain is gone.

On the 21st of March I had my ultrasound booked in at 12pm with the only technician that my gynae trusted the word of. I would also have to do my first bowel prep before the ultrasound. Well, not my first bowel prep (I have ulcerative colitis so need to do regular colonoscopies) but my first one for before an ultrasound anyway! The bowel prep involved a laxative pill the night before and then a “fleet enema” an hour before the ultrasound. This was so they could clearly see my bowel wall and how deep the endo was in in without having poop and toots in the way! The pill was easy, no special diet on the day before or anything. The fleet enema was going to be a problem though because I live 2 hours drive from the city where this ultrasound tech is, so they said I can use a room when I get there and do the enema in there. My partner and I arrived an hour early (for the enema) and struggled to find a park, ended up finding 2 hour parking a couple of blocks away which should be enough but it wasn’t because the ultrasound was late doh! But anyway back to the enema… the enema felt awful! It felt OK at first and then I felt this really hot liquid churning around my belly and then the need to go to the toilet immediately or its gonna come out anyway. I kept going back to the toilet every 10 mins after that as well with just a little brown liquid needing to come out. Not my favourite bowel prep but at least it was fast I guess! We waited and waited and I went back and forth to the toilet until my partner had to make the trek out to put more money in the parking meter and that was when I got called in for the ultrasound. The ultrasound was done with the usual “magic wand” (as I like to call it) up the vagina and they pressed it uncomfortably against my bowel to see what they needed to see. Thank fully what they saw was that the penetration into my bowel wall did not appear to be deep and that it was my ligament stuck to the bowel not my uterus itself! I also had 2 very mobile ovaries so perhaps in the other scans, my bowel was pressed against them stopping them moving?

The good news from these results is that a colorectal surgeon is not needed for my surgery so no stoma / colostomy bag! Hooray! I also wholeheartedly believe that the reason that my endo hasn’t progressed much since the first surgery is because the Mirena has been controlling it hormonally. Sure I have pain and my ovary was stuck to my uterus as well as my ligament stuck to my bowel but that is nothing compared to my 2016 surgery. I feel that my adhesions in the last surgery and currently could have even been from the scar tissue where endo was removed in my 2016 surgery but I am no surgeon and I will haveto see what my gynae thinks of that theory after my next surgery.

😊

At this stage my pain is well managed (for the most part) with Lyrica 75mg at night and Paracetamol / Tylenol slow release during the day. I sleep the night with zopiclone sleeping pill and sometimes am kept awake by mild pain if I don’t take my sleeping pill. My surgery should be in July and I’ll be sure to keep you posted 

**

Zoe allowed me to see her previous surgery reports, scans, and prep docs to share them with you today:

On April 26, 2016, Zoe had an outpatient laparoscopy because of complaints of pelvic pain after sex (which sometimes included sweating and diarrhea), as well as menstrual cramps that mimicked her post-intercourse pain. She had a D&C (dilation & curretage done) to clean out some uterine lining, a cystoscopy to check out the inside of her bladder, excision of endometriosis, and a Mirena IUD placed. Care to see her surgery photos?

The findings of her surgery? Evidence of interstitial cystitis, deep infiltrating endometriosis, a large nodule on her left uterosacral ligament, a large right pararectal nodule, and superficial endo around her right broad ligament region. Her tubes and ovaries were normal, and they confirmed the fact that she has a retroverted uterus. The nodules and endo lesions were excised and sent off to pathology. The biopsy confirmed endometriosis found on her right broad ligament, the left side of her Pouch of Douglas, the right side of her pelvic wall, and both nodules were endo. The lining removed from her uterus came back as as “no evidence of endometritis, hyperplasia, or malignancy,” but no mention of adenomyosis, since that is often located deep within the uterine wall.

In 2018, Zoe had transabdominal and transvaginal ultrasounds due to pain. It showed that she has a retroverted uterus, with evidence of a 1cm fibroid within her uterine wall. Her Mirena was shown to be correctly positioned. Both a retroverted uterus and fibroids have been known to cause pelvic pain. The ultrasounds also showed that Zoe’s left ovary was slightly stuck to the middle of her uterus. During the examination, her left uterosacral ligament was tender. There was no evidence of deep infiltrating endometriosis.

In November of 2018, she had her surgery. Endometriosis was excised (cut out) and ablated (burnt off), adhesions were removed, a D&C was performed (to remove excess uterine lining), and the Mirena IUD was inserted. Her right fallopian tube and ligament were stuck to her pelvic wall; right ovary was stuck in the cubby of the ovarian fossa; a nodule on her right uterosacral ligament which may be deep infiltrating endometrisiosis was discovered; and her rectum and sigmoid colon were stuck to a uterosacral nodule, too. The op report states, “left tube and ovary normal;” no mention of it’s immobile nature found in the ultrasound. The noted stuck bits were freed and a biopsy of the uterosacral ligaments and nodules were performed. She’s provided her 2018 surgery photos for your viewing pleasure, should you so desire.

In late January of 2019, Zoe underwent another pelvic ultrasound due to her worsening symptoms and the missing IUD strings. The ultrasound confirmed the retroverted uterus, as well as the Mirena being perfectly placed within the uterus. It also found that the left ovary was “poorly mobile.” I don’t recall reading anything in her November op report about freeing the left ovary from it’s sticky place.

On March 21, 2019, another ultrasound was performed. A bowel prep was advised so they could have a clear image of her pelvic region. The radiologist reported that a Mirena IUD may make diagnosing adenomyosis by ultrasound difficult, but it didn’t appear that there was any adenomyosis. Both ovaries appeared mobile and were not tender. A nodule was present on Zoe’s right uterosacral ligament and the bowel seemed stuck to the nodule, although the nodule did not appear to infiltrate the bowel wall. The nodule may simply be scarring from previous surgeries or it may be recurrent endometriosis. Unfortunately, one cannot tell from imaging studies.

Feel Good Fridays

A 1903 engraving of Joan of Arc by Albert Lynch featured in the Figaro Illustre magazine

A 1903 engraving of Joan of Arc by Albert Lynch featured in the Figaro Illustre magazine

I hope you all had a wonderful week! Mine has had wonderful ups and laughable downs, but here we sit at the end of the week! Happy Friday!!!

Today I’m inspired by the tenacity of my fellow EndoWarriors. Women who have been handed a nasty hand of cards, yet continue to move forward, stand tall, and are not afraid to reach out for help or comfort when needed. Even on the downer days, wrapped up in a heating pad, popping pain medications, rubbin’ on CBD oil, or crying in a ball on the floor: that inner strength remains.

We lift one another up. Hold each other when we’re down. Fight for one another when the cause arises. We are a sisterhood. An army. A mighty force. We are incredible. And moreso with the bonds we’ve forged.

“Behind her gentle character, the strength of armor was found.”
― Erin Forbes, Fire & Ice: The Kindred Woods

Whatever sort of week or day you’re having, know that you ARE a mighty Warrior. And you have the support of those around you.

Stand tall, Sisters, and consider yourself hugged.

Love, Lisa

Blogs I updated this week:

C-Sections & Endometriosis: Added a March 2018 study of a 35-year-old woman with c-section Endo; added a February 2019 study of 8 cases of Endometriosis developing in c-section scars; and added a February 2019 study of 2 women with c-section scar Endo.

Dungeons & Dragons & Donuts: Added our January 20, 2019, adventure (Sorry we’re a little behind…). Find out how tabletop gaming can help people deal with a chronic illness, forge friendships, and disappear into a fantasy realm for a few hours once a month.

Endometriosis & the Lungs: Added a May 2019 publication of a woman who suffered from recurrent collapsed lungs NOT during her period; yet received a surgical diagnosis of thoracic endometriosis. Your symptoms do NOT have to coincide with your period. Also added another May 2019 publication of a woman who suffered repeat collapsed lungs during her period.

Endometriosis & Wine: Added a Feb. 2019 study about resveratrol and its possible anti-inflammatory benefits for fighting Endometriosis.

Endometriosis Workshop in San Diego

Living with Endometriosis flyer for June 5, 2019 workshop in San Diego

Do you live in the San Diego area?  Are you active or retired military or a dependent of someone who is? And do you want to learn about Endometriosis, treatment options, and how to cope with the disease? 

Join us for an evening with Dr. Mel Kurtulus of San Diego Women’s Health (my excision surgeon!) as he speaks about Endometriosis to the Marine Corps Community Exceptional Family Member’s Program on Wednesday, June 5th at 6:00pm at the Marine Corps Recruitment Depot in San Diego, CA.  I’ll also be talking for a few minutes about our support group, our events, the family we’ve created, and how you can join us.

All military and their families are invited.  Due to the location of this event, it is restricted to active/retired military and their families only. 

Call 619-524-0916 or email ombfamilycaresd@usmc-mccs.org to RSVP.

Date: Wednesday, June 5, 2019
Time: 1800-1930
Location: MCRD San Diego, Building 6E Classroom
3602 Hochmuth Ave.,
San Diego, CA 92140

How much did your physician get paid?

Chart showing Top 10 physicians paid by Abbvie Inc in 2017
Screenshot of Abbvie General Payments, 2017.
Is your doctor on this list? Curious how yours lines up? Feel free to run a search.

There’s a site available where we can now look up our physicians to see what they’ve been paid by companies for their time at speaking engagements, travel, training, and even research.

Why is this helpful?

It might not be. But it’s a wonderful way to get a snapshot of what companies may be lining the pockets, and possibly influencing the choices, of your doctor. (Yes, that’s the conspiracy theorist in me coming out).

Open Payments Data is run by the Center for Medicare and Medicaid Services has a searchable database where you plug in your physician’s info and it brings up their data for the past few years. Or you can search by company! According to CMS, the site was created “to provide the public with a more transparent healthcare system.”

For example, the image above is a breakdown of the top 10 physicians paid by Abbvie, Inc. in 2017 for speaking at events, consulting fees, grants, royalties, education, travel, food, and lodging.

A further breakdown of payments is available, telling you how much a physician was paid for each category (speaking, food, lodging, etc.). If you have questions about what the payments were for, it’s best to reach out to your physician and ask. The site doesn’t provide specifics; just data.

I’ve already looked up my excision surgeon, my colorectal surgeon, my primary care physician, and a few other surgeons I’ve heard of. It’s been fun! Have at it…and strike up a conversation with your physician if you feel so inclined.

Here’s the 2017 general payments breakdown for my excision surgeon, Dr. Mel Kurtulus:

Snapshot of OpenPaymentsData 2017 General Payments to Dr. Mel Kurtulus

And here’s the 2017 general payments breakdown for a popular Endometriosis physician down here in San Diego, Dr. Sanjay Agarwal:

Snapshot of OpenPaymentsData of 2017 General Payments to Dr. Sanjay Agarwal

Notice the difference? I sure did…

Happy hunting!

~ 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

An Update on my Insides

Various clocks, all showing 12:45pm

On April 22, 2019, I met with my excision surgeon and gynecologist, Dr. Mel Kurtulus to discuss the results of my annual pap smear, ultrasound, and blood work.

The pap smear came back normal for both of my cervixes. Yay! The blood work came back stellar. The ultrasound; however, had some not-so-welcome results:

  1. My left ovary is developing a cyst. Not just any cyst, but it’s either a hemorrhagic cyst… or (wait for it…) an endometrioma. Right now it is small, coming in at 1.5cm (a little over 1/2 an inch); and,
  2. Small abnormalities within my uterine wall may be signs of adenomyosis. This came as a surprise…but I let him know I was familiar with the condition as many of my EndoSisters had it as well. I’d done research and blogged about it back in 2016.

The plan? To remain positive – it’s a small enough cyst that doesn’t warrant any action (yet), I’m not in ANY pain, I’ll have a follow-up ultrasound in late July, and I’ll meet with Dr. Kurtulus in early August to discuss those results. I will continue tracking my diet, pain, and symptoms in the meantime. And if anything sparks up horribly before then, I’ll call for a consult.

We spent several minutes afterward discussing an upcoming event that we’re hosting together, as well as a few concerns about ultrasound and post-op procedures. The meeting ended in our usual smiles and hugs.

I think if I were in pain, being positive would be harder to maintain. But the only indication that I have anything wrong on the inside (or the possibility that my endometriosis is coming back) is my ultrasound. But will I need surgery in the future? Only time will tell. And will I miss out on future vacations, like Burning Man (a place lovingly referred to as Home, a week spent making amazing memories with friends)? I haven’t been able to return since 2015…and I miss it. Who knows. My best friend and other-love-of-my-life, Rosie, lifted my spirits yesterday with “…you are more Home for me than any place. We don’t need any destination.” So if I am robbed of another two weeks vacation in the future due to a need for another surgery, I won’t lament. I will make other plans with those that I love.

Forging lasting relationships with your medical providers and their staff can lead to amazing experiences and friendships. These people aren’t just my doctor, his nurses, or administrative staff. I consider them my friends. And we’re all in this together.

I don’t know how I got so lucky. I was randomly assigned this gynecologist by my Primary Care Provider back in 2013 because I moved to San Diego, had new insurance, and was in need of a pap smear. And I am so very, very, very grateful.

A friend, fellow EndoWarrior and Sister of our local support group sent me a study showing results of N-Acetylcysteine reducing the size of endometriomas in a small study group. So, I’m going to give it a try. She had previously received a “it can’t hurt” approval from Dr. K when she brought it up to him for herself, so I’m sticking to the study dosing, three times a day, and will see how it looks in July.

So, the plan is in motion. The appointments are on my calendar. And life goes on.

And jokes are always a good thing: “Your an ova-achiever” and “Stop growing so much stuff!” and “At least your left ovary is still working well” are all fun observations since yesterday. They all made me laugh. Still do.

Feel Good Fridays

Woman with eyes closed, smiling, and spinning in the falling leaves
Photo by Bruce Mars

Another week has come to a close. Already. Oh my goodness, how time flies!

Do this with me:

“Take a deep breath. Inhale peace. Exhale happiness.” 
― A.D. Posey

And do it again. Close your eyes, let it in, fill your lungs and your being. Feel your ribs expand. Deeply. Hold it a second…then exhale. Think of some favorite memory while you do.

And smile.

I hope you have a wonderful weekend. Love, Lisa

All is well

Woman standing in towel showing stomach after laparoscopic surgery a week earlier; four incisions covered by bandages. Taken by Lisa Howard, July 2018
© Lisa Howard; 2018

Thank you to everyone for the outpouring of support from my emotional Friday. I’ve received so many virtual and in-person hugs. It’s awesome. You guys are awesome.

I wanted to let you know I’m doing well. I look forward to my meeting with my physician on April 22nd to go over the ultrasound results and have a heart-to-heart talk. And trying to remain positive.

What’s up with the above-photo? I recently developed a roll of black & white film that had been in my camera for the past several months. I couldn’t remember what was on it, but I do have one rule when it comes to my photography: one weird, creative, or special selfie must be taken. It’s often hit and miss as it’s an old camera (a Minolta XG-1 from 1982) as there’s no auto focus…haha, but it always makes for a fun project.

Yesterday I picked up my pictures from the developer here in San Diego. And the above photograph is the very first one in the pile. I had totally forgotten about taking it. Was clueless it was on there. And wasn’t prepared for the flood of emotions that boiled up to the surface. This was taken about a week after my July surgery.

I felt sad, then angry at this relentless disease, then sad again. Overwhelmingly so. But as I stared at the photo while safely tucked inside my Jeep parked in the parking garage in downtown San Diego trying not to cry, those negative feelings morphed into something else: a sense of pride, strength, and courage.

There I was, a week after my surgery: I felt well enough to shower alone. And set up the camera on the bathroom counter, tinker with settings, and cross my fingers hoping it would come out. Unashamed of the broken body that the camera would capture, I stood tall and strong.

And this photograph captured that moment.

My moment.

Our moment. I know that you, EndoWarriors, have stared into the mirror at your incisions, your bandages, your scars, your pain. Stand tall with me.

We can get through this.

All is well.

Regardless of the journey…We are alive, and we are in this together.

A positive spin on a painful situation

Maggie Flood selfie

Our friend and local EndoSister, Maggie Flood of Sacral Spaces, shared something very uplifting in our support group’s page today and I wanted to share it with you:

Just wanted to share a little piece of my weekend with you guys! I posted this on Insta because I am feeling SO GOOD today after my weekend flair-up, and here’s why:
….
I had what I can only describe as a flair-up of some sort this weekend. Is it “autoimmune”? Yeah, probably. Is it from “endometriosis”? Eh, maybe. Is there something wrong with me? No, everything is correct, because the diagnosis nor the label matter. What matters is that something happened, and I knew what it was that set me off. On Friday night I let myself get too hungry before we went to a friend’s birthday gathering at a crappy bar. I felt faint and needed SOMETHING so I ate a piece of a friend’s quesadilla in utter desperation. Fast forward through two days and my abdomen felt like burning charcoals from the inside, the skin all over my body feeling like a bruise to the touch… random shooting pains like electricity through my wrists, fingers, and hips.
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Here’s where I can choose to say “life is awful – I can’t even have some cheese without being in pain.” Instead I choose to say, “Life is amazing. My body is AMAZING! It’s BEAUTIFUL how sensitive I am. I’m so grateful that I have a body that can tell me what’s right and what’s wrong.” Only I can experience what I experience.
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Instead of forcing myself to do more than I could, I laid on the beach and continued my research on trauma and autoimmune disorders yesterday (how beautifully hilarious and timely). When I felt them I took some moments to close my eyes and allow the electric shocks run through me, felt my body recalibrating. I imagined the sun soaking them up. I felt the cold spring wind. I laughed. I’m alive, and I’m human. This is what I signed up for.

Thank you, Maggie. I oftentimes bemoan the fact that I can’t have this or can’t have that. And I truly hope that your positive body thinking reminds me later that I am grateful for the body I have and the awareness that comes with it.

Maggie will be teaching a class on Navigating Painful Sex on May 19th in San Diego. If you’re interested in joining us, we’d love to have you!