The One with The Parentheses

Happy anniversary to my body!!! Four years now.

My surgery anniversary is always a special day for me. I like to reflect on the magical man who came into my life to change it forever (Dr. Mangal) and how he took a frozen pelvis and put all my parts back in their proper places. I’m constantly learning how to honor my body and work synergistically with her, instead of fighting her like I did in the past. We’ve developed quite the beautiful relationship.

I’m currently reading The Doctor Will See You Now and cannot recommend this book enough for us endo sisters, and those of you with loved ones suffering from the disease who want to understand it more.

I have agonized about my weight for a couple of years…(see my last post). I’ve done everything imaginable to get it off, to no avail. I mean, we’re talking a good 35lbs piled on within the past 2 years. And knowing my endo diet and my lifestyle…well it just didn’t make one god damn bit of sense, and my frustration (and dare I say, disgust?) was insurmountable. It wasn’t until recently that I freed myself from this. I returned to a previous doctor to start another gut/digestion healing program, and she flat out said that the weight was due to my anti-depressants so I could just forget about trying to lose it until I come off of them. And then I watched my frustration float away like a cool unicorn balloon. Because there’s nothing I can do. I’m off the hook. If this is the price I am to pay, well, bring on the tolls. Because this weight represents me getting out of bed. This weight means I don’t cry every day. This weight means there is no sadness pressing on my chest so hard that I can’t breathe. This weight means I have a bangin’ rack and a bangin’ booty.

I’ve been absent from the blog/FB/Instagram. Other than checking Facebook for local dance events, I don’t spend any time on it anymore. My Instagram account (I refuse to say “insta”) is mostly health and dance related too. For a while it was feeling like ALL I WAS TALKING ABOUT WAS ENDO…but then again, isn’t that the POINT of my blog?! Hello. Read the ‘about me’ section. I’m here to bring awareness to the disease and all the little perks that come with it. Maybe tiny insecurities were springing up, and I feared I would come across as complaining or wallowing or unable to move forward. Which is silly because I am none of those things. Yes, my life sucks 95% of the time. Yes, I feel terrible 100% of the time. But what I do with that is I take it, I pack it into a little ball in my hand, and I throw it at every target I find. I get shit done. Sometimes I sit and do nothing, but that’s due to the chronic fatigue. I wish I could run and sniff and jump and stare, but that’s only for deer. (30 Rock ref)

I read somewhere that endo fatigue has been compared to the fatigue cancer patients feel during chemo treatment. It’s for real, y’all. It is quite a serious obstacle to healing, as healing usually requires movement and doctor’s appointments and going to the pharmacy and cooking and eating whole foods….so how do I get those damn spoons to do it?

Anyway. I’ve been following a cystic fibrosis patient on Instagram who had a double lung transplant a few years ago, and recently had a second double transplant last week. Before her second transplant she was living in the hospital for 120+ days, unable to breathe or eat on her own. She’s 27. I have been following her journey and learning SO MUCH about CF, transplants and donors, and how an entire team works together to solve a case. I have been brought to tears many times reading her (and her family’s) stories as they post daily updates (the good and the bad) (what’s up with all my parentheses in this post?) about the day to day uncertainty if she will make it through the night. I sobbed after her transplant surgery when I saw she was able to walk without a breathing tube. It has ignited a curiosity about transplants and is something I really want to explore on my nursing journey. Without finding her, I’m not sure this interest would have developed. Which then made me realize that this is the point of my blog – to bring awareness like she has. Previously I didn’t know much about CF, what treatment looks like, and what life with CF looks like. I am so grateful that she shares so much so I can get a raw glimpse of the day to day. I can’t imagine the sense of fulfillment in being part of a team that gives AN ORGAN to a person to give them more time. Wow.

All that to say, I really need to get my shit together. This is what my current chronic illness sitch looks like….

meds2.0

Yeah, I know. That’s not even all of it.

The next 6 months I’m following several different treatment programs to reduce/eliminate some meds and heal my digestion that is forever wonky and most likely the cause of my depression, anxiety, blood sugar dysregulation, high cholesterol, high triglycerides, inflammation, inability to absorb nutrients and fats, dehydration, and chronic fatigue. I have even more motivation to get it done because I have to be well if I’m to succeed at nursing school. So I’ll try to write about my protocols for all you other spoonies…maybe it will give you some ideas.

Plus, ya girl is going to Israel and Jordan in September and I need to take with me a body that can function. I’m terrified my body will crash and I’ll be all laid up in the hotel, looking at the beach from my bed and screaming “whyyyyyyy!?!?!?” into the darkness while my friends go out and eat the best shakshuka in the world. This will be my first international trip since the India Nightmare in 2013 and mama wants to get it right get it tight.

Here’s our itinerary:
Aqaba (for scuba diving in the Red Sea)
Petra
Wadi Rum
Ein Gedi (kibbutz, sunrise Masada hike/Dead Sea)
Jerusalem
Tel Aviv

Any recommendations are welcome. Specifically, a camp in Wadi Rum if anyone has done it. Currently need to get that booked. Also interested in any day trips from Tel Aviv.

Changes I’ve recently added:

  • Coffee enemas (to help with detox)
  • Hypopressive breathing/low pressure fitness (to rehab a pelvic floor ravaged by disease)
  • Forcing breakfast (it’s common to not eat breakfast when you have blood sugar issues)
  • Reducing Zoloft (SSRI’s are notorious for causing GI upset. Since I’m in remission, my doctor agreed that I can taper off my meds and see how I do. The main motivation behind this is to remove any culprit that can interfere with my digestion functioning happily)
  • Sitting in the sun immediately after I wake up (resets circadian rhythm + Vitamin D)
  • A ton of new supplements to kill some pathogens and opportunistic bacteria I tested positive for
  • A ton of digestive enzymes
  • Herbal teas ( I hate herbal tea. But I’m sold on certain ones with digestive benefits so I drink them for medicine, not pleasure)
  • Walk or swim after meals to keep blood sugar regulated
  • A strict morning and evening routine
  • A 10 step Korean skincare routine

Let’s talk about nursing updates. I’m in the middle of summer school with chemistry, and it ain’t so bad. Just finished up the lecture with an A (holla!) and start the lab on Monday. Then I’m done with prereqs and have the fall to anxiously await acceptance somewhere. UTMB is my #1, and they are in the middle of sending out emails for interviews, so my fingers and toes are crossed. In the meantime, I’m applying for TWU and UT Health. UT Health requires a different entrance exam (HESI) which I’m taking in August. UTMB and TWU require the TEAS and I took that monster in April. I’ve also started exploring out of state schools because it’s so competitive and I think I need to cast a wider net. Eeek.

Sidebar nation:
Here is a list of words/phrases I hate, in order from most to least:

Preggers
Wifey
Fur babies
Hubby
Lunch
Sorry not sorry

Oh man. It feels good to get that off my chest.

Here are some things that have made me happy the past couple of months:

Killing Eve (BBC) –> also the book that inspired the show
Marcella (Netflix)
Swimming in the sun
Korean skincare. (you guys. You. Guys.)
My Favorite Murder (foreva eva)
Iced coffee
Seinfeld reruns
Maternity jeans (fit my endo belly like a glove)
Doggies

End of list.

hurr

My new hair. Summa summa summa time!

 

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4 Responses to The One with The Parentheses

  1. Carrie says:

    I love readibg your posts! I love you and hope to see you sometime soon!

  2. Julie Steif says:

    Glad to read your blog again! Sounds like things are going in the right direction for you! Congrats on moving forward with nursing school. Good luck on acceptance at one of the schools!!

    I’ve been to Israel every year for the last 5 years and have hit all but one of the places you’ve listed.

    I have not done Aqaba, but my husband (and I’m one who usually says hubby so I won’t here but don’t hate me for saying that when you read my facebook posts) says the scuba diving is fantastic there. But if your body fails you and you still want to see the sea creatures, you can go to the Eliat side and do the underwater observation tower. You can see all 4 countries up at the lookout post, and see the fishes and coral down below.

    Petra is so awesome. Sooo many cool things to see. If you need to take it easy, you can get from the entrance to the Treasury in a horse buggy. And if you want to go way up top to the Montasary, it’s a super long and tough hike, so don’t be shy to ride up to the top on a donkey.

    No recommendations on Wadi Rum camps. We only did a one day trip to Petra and did not sleep there. But we passed by and explored the place for an hour or two.

    Sunrise hike at Masada will be tough…i don’t think I could do it. We were there last week and they closed the snake-path trail bc it was too hot and didn’t want people passing out. This was daytime of course, and in June, not September. But once again, if you’re not up for the hike, the gondola ride is cool and gets you there faster. Not sure if it operates before sunrise though. According to the website, they operate at 8am…so it won’t be operating when you get there but you can take the gondola down. Supposedly you can make arrangements to ride the gondola if you have a group. My husband had a group work event there a while back and they were able to have the gondolas up and running for them.

    Dead Sea is cool. I believe all the beaches have public access. When I’ve been (I’ve been 3 times), we’ve always arranged for hotel or day passes from one of the hotels so that we could go to the spa facilities to use the inside Dead Sea pool, the regular pool, the sauna rooms, the steam rooms, and to properly wash up and such. Remember that any open sores will burn. And you don’t want to get any of the water in your eyes or in your mouth. That hurts.

    Jeruselum…I have 2 or 3 tour guides I highly recommend for this place. They will be able to take you through quickly and give you all the history, background, and fun information. You can tailor the tour to be more religious or just historical. I’m not a religious person and these tour guides were able to give me the historical background and to briefly tie it in with how it impacted the religion. It was the right mix for me. One of the tour guide’s specialty is a food tour through Jeruselum. You’ll need to allot more time to the tour to fit in the food tour portion. So worth it though. Mmmmm!

    Tel Aviv has a lot to offer too. Old town Jaffa is just a few miles away. Walking distance too, depending on where you are staying. Lots of history here as these are where the founders of Tel Aviv originated. The town is over 5,000 yrs old!! Other nearby places to explore: The Carmel Market is a nice food market as well as a flea market and is fun to walk through and explore. The beach is also great and relaxing. You can bike ride along the beach or in large park further north of Tel Aviv. Alternatively, there is this cool park outside of Tel Aviv, called Ariel Sharon Park, that was previously a landfill, that is cool to visit. Great vista views of Tel Aviv.

    Nearby daytrips: Caesarea – an old deep sea port built by King Herod, the same king that built the palace in Masada. Probably an hour north of Tel Aviv, along the coast.

    If you are up for a long day trip, you can try Haifa, a nice town, but more known for the Baha’i Gardens. (About 1-1/2 to 2 hrs away, north of Tel Aviv, also along the coast.) You can go another 30 min north and go to Acre, an old walled fort city. You can see some aqueduct ruins here. (You can see some in Caesarea too). And add another 30 min north and you get to Rosh Hanikra to see the grottos. Grottos are cool caves that were carved out by the waters. The beaches here are beautiful. But the grottos are super cool.

    If you are able to do longer drives, you can also try the Sea of Galilee. Lots of nature stuff and pretty sites. This is more inland, northeast of Tel Aviv.

    Hopefully this helps. You can always message me if you have questions, or if you want contact info for local tour guides. I’m a big fan of tour guides. They know how to get you in and out of places, show you the important stuff, feed you with lots of good information, etc. If you want to see as much as you can in a short amount of time, this is the way to go.

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