All These Things That I Have Done

Monroe with "Endo Belly"

Many people don't know that Marilyn had Endometriosis like me. She had multiple miscarriages and a tubal pregnancy. She had emergency surgery and taped a note to her own stomach begging the doctor not to remove her uterus because she wanted to get pregnant. Many can't agree on her dress size. Looking at this photo, I understand and relate. That's not a pregnant Monroe despite speculation. It's endo belly. The same thing that happens to me.

Many famous women have endo including Dolly Parton, Halsey (who suffered a miscarriage on stage), Susan Sarandon, Whoopi, Padma Lakshmi, Alexa Chung, Cyndi Lauper, Emma Bunton (Spice Girls), Amy Schumer, Daisy Ridley, Emma Watkins (The Wiggles), Meg Cabot (author of princess diaries), Jillian Michaels, and more.
It's theorized endo pain played a role in Monroe's addiction issues.
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​I thought I'd start with this interesting story before my catch up. 

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I wanted to catch up with everyone. A lot has happened since my first post! I want to say thank you to everyone who read it and sent me kind messages. I super appreciate it. 

Friends gave me a lady bug ornament in memory of my lost pregnancy - how Thoughtful

Sean and I made the decision to take the referral to AART after
researching everything in a local support group about infertility.
We still don't have the money for full blown IVF but our consultation will be paid for by insurance. I may qualify for a laparoscopic surgery that could clear my tubes, check the state of my eggs, and remove some endo. For that alone I think it's worth it for me to pursue. They may be able to suggest some less invasive treatments and interventions depending on what they see. It's a 6-8 month wait, but once my tests start coming back I may be able to get on the cancellation list. Hopefully I don't have to wait that long. 

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​I am feeling better about this decision and my future now. A bit more hopeful than I was when I started this blog. The gyno had told me to choose between fertility or pain - which was more important? You might think fertility but my pain is awful too so they feel the same to me. What a choice to make!

My latest line of treatment

In the meantime this is what I am currently doing to manage my pain:

• Duloextine - Helps with pelvic pain and hormone-induced mood swings
• Black Seed oil - All natural remedy supposed to help manage chronic inflammation
• Bee Propolis - Lots of studies suggesting this can help with endometriosis symptoms and infertility (who knows? worth a try I think) 
• Ibuprofen - I take this every second day or so, I try not to take it daily it's hard on the tummy
• CBD oil - 50mg/1ml a day and then as often as needed during endo flares
• Celebrex - Twice a day during flares (no ibuprofine those days)
• Tylenol - with the Celebrex during flares (also helps both celebrex and CBD work 
• CBD Vape - All the time during flares 

I also read this week that the University of Rochester's iGEM team has been working on a noninvasive endometriosis test. The results so far seem very interesting and promising. Wont help me but can help loads of others who will wait 8-10 years to get a diagnosis. 

Sold this tail

Since I made my last post, I made the decision to sell my silicone performance tail to a good friend. It wasn't an easy decision, but my endo really made it difficult to use this costume. It hurts my hips and pelvic floor and can't accommodate bloating or flares. As a result I haven't used it in about 1.5 years! I feel guilty having it just sitting there all the time. It's worth a lot and I know given everything the money could be put to good use. I am so glad it's going to my friend as she will totally love it and the tail will have new life. It's hard to give things up because of my endo. Really hard. But the fabric tails are so much easier and I thankfully have so many to choose from to keep me swimming. Maybe this old silicone tail will end up in a museum some day. 

I also ended up having a covid-safe birthday party for my 35th birthday! We stayed at a hotel with our team (our bubble through all this) and ate snacks, watched Splash, and swam in private pool bookings. My team and husband went above and beyond to make it special -knowing I went through so much. Nessie made me a martini glass and got me Sailor Moon Colour Pop Makeup! Nova made me a sash! I got to meet a new merman and he told me he's been my fan since he was 9! I got an ursula bathing suit, some sailor moon accessories, sailor moon sweatpants, Sean got my orange roses, and I got to try one of Merrow Atlas's tails too - the moon wolf. 

It was the best birthday I've ever had. I felt so loved at a time when I was feeling so vulnerable and really needed it. I have been so happy ever since. Check out the pics in the slideshow below!

Covid Birthday

Things are locking back down here however. We are one of the safest places in the world but cases are still climbing right now so we decided to drop bubbles from 10 to 5. Sean and I are going to be home bodies in hopes we'll be able to go back up to 10 for Fishmas. In the meantime we're trying hard to be creative. In the tails you see above I just received the pink one (modified for the FF1) and I WILL be receiving the Narwhal tail for the 4. Though there's nowhere to swim right now! 

Apologies if seeing me in my underwear isn't you're thing! haha I figure it's better than a "Birthday Suit"? LOL. As part of my Birthday Sean and I decided to test out boudoir photos. He'd never photographed them before and I haven't posed for any since I was a young 100lbs model. LOL Believe it or not this was super difficult for me. As I've aged I've gotten more insecure about my body - mainly because of my chronic illness. From day to day I never know what to expect from my body and how it will look. I've got stretch marks and cellulite, a few rolls, and I am trying hard to learn to love them. I also sometimes find it hard because as I age I see so much of my late mom. I know everyone's bodies are different and that some people roll their eyes when I'm critical of myself, but it really is a daily battle with the dysmorphia that chronic illness causes. The night before my belly bloated so big from my endo I was surprised it went back down in the morning. So we took advantage of the morning light and got these pics in.

You can see the rest in the slideshow below. 

Other than that as I sit here typing I am fighting off an endo flare. I could feel it coming days ago so I have been working my butt off to do what I can to offset the pain. Resting lots, loads of water, all my supplements, early pain meds, got the hot water bottle nearby and went for a massage this week. I am thinking of adding in acupuncture. I read it can help endo pain along with infertility stress. 

Mertailor sent me some harem pants to test out and wow they're great endo pants! The tie in front and back and you can basically totally control the fit. So ideal for someone like me who never knows what my tummy or pain will be like. 

Today we decorated the Christmas tree as well. This is way earlier than I normally do it... but with everything going on I felt like we needed the cheer. 

I'm not sure what to expect in the upcoming weeks. I am on the waitlist for my dye test, I've got my bloodwork scheduled, and we're trying to stay safe from Covid 19. I hope I get to see my family over the holidays. If you're in a bad spot please be careful over Thanksgiving! 

Here's a slideshow of things since my last post - just random odds and ends. 

Use my code RAINA10 for 10% off mertailor clothing

One last thing I'll share with you is a video of me doing a minute breath hold. Remember, I have training and a safety spotter. (person spotting me is a rescue diver). My personal best for breath hold was 3 minutes stagnate. My average is typically 2-2.30 but I haven't practiced all year due to covid and lack of pools, I also recovered from histoplasmosis. I can typically at least do a minute without practice. Thought folks might want to see :)  

I also have a video that shows some of the fun stuff we did over my covid birthday! Check them out.