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….
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)
Ein Gedi (kibbutz, sunrise Masada hike/Dead Sea)
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.
Here is a list of words/phrases I hate, in order from most to least:
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
Swimming in the sun
Korean skincare. (you guys. You. Guys.)
My Favorite Murder (foreva eva)
Maternity jeans (fit my endo belly like a glove)
End of list.