Your baseline is different than my introvert spoonie baseline

 

“The hardest part of managing a chronic disease is you never know how long a flare will overstay its “unwelcome.” The other problem with a flare is that if you do too much (like I did this week), it just sets you back even further from returning to you baseline. And so, planning becomes challenging. Does your spouse cancel his business trip? Do you call someone to stay with you? Do you line up a contingency on top of the contingency? The mental planning of a chronic disease is exhausting by itself, then you throw a Type A personality on top and it’s a hot mess.”

https://themighty.com/2015/08/good-days-for-people-with-chronic-illness/

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Anal lube for IC. For real.

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https://smile.amazon.com/dp/B00EF8OL0S/ref=cm_sw_r_cp_awdb_wwcQzbJC59KB0

 

I joined yet another Facebook group, IC 101, and am learning!

If you aren’t prescribed vaginal Valium (which is also $60 for a tube out of pocket), you can get the lidocaine component OTC with anal lube.  This made me laugh, which is good because…

Unlike my endometriosis group, there is a lot of information on suicide and what to do if someone makes a threat online.  I can see it.  Endometriosis pain had me in the ER, but when you get there, the morphine dulls the pain.  Nothing wants to make you hit your head over and over against a wall like urinating 20 times a day and being sleep-deprived.  I always say, I think I’m going insane.  I finally understood why people with chronic pain commit suicide.  I’m not going to commit suicide, but I truly understand where people are at when contemplating continuing a life with extreme pain and no hope of treatment, much less a cure.

This community is waaaay more into the weed and CBD oil.  I don’t find marijuana to relieve peritoneal-quality pain for myself.  There isn’t much information about specific oils and strains best for IC.  Someone do the research!  Again, I can see choosing to vape 1:1 CBD to THC where you can still be lucid, but relaxed, over taking addictive, mind-fogging opiates.  And a pharmaceutical drug compared to chemotherapy…

Elmiron continues to frighten me.  Here’s my hairbrush test to gauge whether I’m losing hair.  Maybe hair thinning would be good for summers in the south?

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Before

Waiting to hear back from Dr. Bruce before starting Elmiron because my pharmacy says it would be $1158 had I not met my deductible.  I’m not going to continue past 2018 with that scenario so I’m wondering if instillations in this year or an alternative medication are feasible.

My chronic twin, who had an enormous amount of fibroids and her uterus taken out by Dr. Garza, happened to go to a urologist on the same day for IC symptoms and was prescribed Myrbetriq.  She also has an autoimmune disease and is on chemo-like medication which causes nausea.  Quinky dink!  I only woke four times last night but that may be where I’m at in my cycle.

Finally! It’s happening to me, I am seeing a urologist

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Never have I ever been so excited for a pelvic exam

Finally, my appointment with Dr. Grady Bruce of Urology Austin (Round Rock location) has arrived!  He has such an excellent bedside manner that I’m naming him.  He is an expert in Interstitial Cystitis and my most-dreaded disease has become my official suspected dx.

I was the youngest person in the waiting room, maybe the only person without gray hair.  That’s cool; I’ve accepted my life as an elderly person.  I waited a half hour past my appointment time but once I was in the exam room, Dr. Bruce came in immediately and spent an hour going through my history and sx.

He said he was sorry when he heard about my ER visits for pain and I was like, oh.  Thank you!  I am not accustomed to this.  He spoke highly of my treatment team.

We talked about how pregnancy can alleviate IC sx and I explained about our plans for IVF and the failed IUI, which he expressed sympathy for again.  Amazing!   My low expectations for healthcare are showing, but soon thereafter I was tearing up as he was validating how difficult it must be to endure chronic pain, endometriosis, dyspareunia, infertility, all of which was not my fault.   Those were his words.  Waaaaahhhh THANK YOU.  He asked if I were under stress with a young marriage and I was like, yes, we’re in couples counseling.  Dr. Bruce does the tissue handing move.  Actually rummaging through cabinets and opening a package.   I try to keep tissue within hand’s reach in all counseling sessions.

Dr. Bruce states nothing in my history would prevent a “complete remission” as my diseases are incurable.   He said he didn’t want to throw medication at the issue but I’ve already tried the first steps of IC treatment.

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Throw all the drugs at me!  I’m desperate.

 

TX plan: continue pelvic floor PT, pain management through Dr. Garza, Prelief, avoiding trigger foods, add the dreaded Elmiron, sample Myrbetriq for 4 weeks then return to meet with nurse practitioner

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Ready for nausea!  Nausea is my least favorite feeling.

He explained scientifically how Elmiron (opposite of heparin) builds up slowly in your system (like a year) to rebuild the porous bladder wall to prevent acidic,  painful urine from coming through.  Myrbetriq will relax a bladder muscle,  allowing for a greater capacity for urine.  This could work within a few days.  I know I’ll need to adjust meds for IVF but I want to get to a stable place and, as always, feel slightly more sane through sleep.  In summary,  go to Dr. Bruce if you’re in the area and suspect IC.

 

 

 

 

My mesentery organ hurts

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J Calvin Coffey/D Peter O’Leary/Henry Vandyke Carter

“Researchers have classified a brand-new organ inside our bodies, one that’s been hiding in plain sight in our digestive system this whole time.

So what is the mesentery? It’s a double fold of peritoneum – the lining of the abdominal cavity – that attaches our intestine to the wall of our abdomen, and keeps everything locked in place.”

 

https://www.sciencealert.com/it-s-official-a-brand-new-human-organ-has-been-classified

 

My amazing PT was painfully massaging the mesentery (kind of underneath my ribcage in the center between my belly button) and I realized this is the ache I feel multiple times in the night when I wake up to use the restroom.  My PT said I did have adhesions and I don’t know how endometriosis or gluten destroying my small intestine may have affected the mesentery.

 

 

Petition to ACOG for better endo treatment

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https://www.causes.com/actions/1789268-sign-the-petition-to-we-are-petitioning-the-american-congress-of-obstetricians-and-gynecologists-acog

 

The American Congress of Obstetricians and Gynecologists was initially formed to be the “premiere professional membership organization for women’s health.” ACOG’s guidelines on treatment for gynecological diseases have a far reaching impact and influence on the ways in which diseases are diagnosed and treated by practitioners. ACOG also has control over how medical procedures are coded, so that insurance companies can adequately reimburse practitioners for their services.

Educated patients, dedicated advocates, and expert endometriosis practitioners strongly believe that ACOG is not acting as a leader in endometriosis healthcare. The lack of institutional leadership has caused suffering for patients in the form of delays in diagnosis and poor access to effectual care. In a March 2017 article, ACOG’s Tom Gellhaus, MD shared that up to “63 percent of general practitioners feel uncomfortable diagnosing and treating patients with endometriosis, and as many as half are unfamiliar with the three main symptoms of the disease.” This is a systemic problem that needs to be addressed immediately by creating new standards of care with the input of thought leaders in the endometriosis community.

Furthermore, respected endometriosis surgical leaders have asked ACOG Leadership to create coding specific to the techniques used during extensive excision surgery in order to facilitate appropriate compensation. Due to the lack of reimbursement, many patients are billed for these needed surgical procedures as out-of-network services, making needed excision techniques inaccessible to so many patients who cannot afford treatment. It is improper and unjust to compensate surgeons who spend hours meticulously removing endometriosis from a patient’s bowels, bladder, gallbladder, appendix and diaphragm, the same as doctors who perform a 40-minute ablation procedure, leaving the majority of disease behind. We demand that the ACOG leadership work with endometriosis excision thought leaders at AAGL to create the coding needed so that excision surgery, the gold standard of treatment, may be accessible to all.

Until changes are made, the endometriosis community considers ACOG to be condoning practices that delay diagnosis, creating unnecessary obstacles to the effective treatment of endometriosis, and ignoring the needs of 1 in 10 women. This is a social justice issue that profoundly impacts millions of patients’ emotional, social, and physical well-being daily. Support this petition if you agree it is time for ACOG to change its policies with the help of leaders in the endometriosis community.

Signed,

Casey Berna

GF HelloFresh: August Week 3

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Maple-glazed pork chops, sweet potato mash, garlic green beans

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Southwestern sweet potato hash with bacon, avocado lime crema

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Italian ciabatta cheeseburger with mozzarella, red onion, balsamic greens

GF: sub gluten -free buns

 

Discount code: NIMBUS

I had an amazing meal at Boiler House in San Antonio, which is part of the Max’s Wine Dive conglomerate, meaning the owner has Celiac disease and has separate kitchen space in each restaurant for gluten-free items.

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Chicharrones…FRIED pork skin

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Bond marrow and five different spreads for the best gluten -free bread I’ve ever had ever

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Dulce de leche

And there were goat grits.  Recommended.

Self-care: craftstime

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Before: painter’s tape

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After: cheap art

I would pay money for that!

I wanted something to fill the large walls in our enclosed staircase.  I looked on Pinterest and everything was too much effort or not to my sensibilities.  Triangles are meaningful to Trent and myself so I used the color palette of our upstairs (with leftover craft supplies).  I also could have painted the canvases first, but I didn’t think of that at the time.  I used Target chalk paint in a matte blue, Trent spray painted his triangle gray, and I combined Mod Podge glue and gold glitter for the sparkles.

Endometriosis Patients Should Wait At Least 7 Months After Laparoscopy to Boost IVF Success Rates, Study Shows

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https://endometriosisnews.com/2017/08/21/in-vitro-fertilization-ivf-success-rates-after-surgically-treated-endometriosis-and-effect-of-time-interval-between-surgery-and-ivf/

 

This month was my six-month excision anniversary.  As predicted and hoped for, the recurring endometriomas on my right ovary shrunk from 5 and 6 cm cysts to a single teeny 1 cm cyst.  I no longer fear going to the emergency room for leaking cysts and am able to take on doula clients without a spoonie disclaimer.  As always, big ups to Dr. Devin Garza at Renaissance Women’s.

“Your husband will need to do the butt shots.”

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I hung out with my mother’s friend who successfully utilized IVF twice and here’s what I learned.

  • The shots need to be administered at the same time every day (whether AM or PM), but I can wait until 11:30pm when Trent comes home from work.  Hooray!  I was not looking forward to injecting a needle into my gluteus muscle in a mirror.
  • She was terrified of needles and survived.
  • The needles are smaller since the last time she did IVF.
  • Be prepared for IVF to not work on the first try (oh, my mind has already traveled that future).
  • You can calculate your chances of a live pregnancy with the SART Patient Predictor.  Let’s watch my chances deteriorate with each passing year.

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Why are you so skinny, you bitch?  Because I’m losing weight from stress.  Jealous?