I got married + got jipped on the engagement ring [sorta!]

A month in …

So it’s a little over a month since the diagnosis of my autoimmune disease, sarcoidosis [now referred to as my Husband – as this will be my lifelong companion] and 2months since my symptoms went bananas and forced me to that fateful X-ray @ good Ole Faithful aka King’s College – it’s been a pretty fun and interesting time.

In my Julie-Andrews-Sister-Maria-Sound-of-Music beautiful voice … a lil bit of Zara trivia: when I concentrate this is my song of choice to starting singing and humming

Soooo…

🎶THESE ARE A FEW OF MY FAY-VAH-RIT THINGS 🎵

⚖️ So this is truly an interesting Husband, he is not predictable in any way but has been damn good for my body image – I’ve lost 25lbs. So he’s never going to tell me my ass looks big in those pants, though that is a damn good thing and the aim but more importantly, I wouldn’t ask anyway.
BUT it does mean that I’m 1/2 way to through my weight loss goal for the year. 👏🏾 which works out nicely for me as the only plan I made for 2018 was to return to my dancer body with having to be a bridesmaid at my boo’s wedding in April as my 1st quarter motivation.
If I had known that this symptom was actually gonna work, I would have asked my new Husband to show up much sooner in my post-stage retirement.
Another side note, I don’t know if this happens to other women, but when I gained my weight over the last 4.5 years so has my vagina – my vagina got fat! like juicy fat! [the dream of many a dancehall tune] but not anymore, she lost weight as well in this last month. 😒

🏃🏾‍♀️🚷 I still can’t walk a flight of stairs without breathing like I’m a terminal emphysema patient but I can do 10 squats and 10 jumping jacks – not sure what that’s about, but hey! I’ll take it where I can get it. And the weight loss means my ass is starting to look a bit low and that ain’t cute! I can’t have my mother + sister wanting to disown me. Massive thanks to The Ailey School and more modern dance than ballet at college for giving me my ass – Finally! [KB memory: On my first visit home in my Freshman year – my mother’s first question to me was “Who you been fucking? You finally get an ass!”] Watch me squat while I brush my teeth!

💊 💉 I now live on liquid codeine [it’s the only thing that suppresses my violent cough] which I had no idea makes you loopy [according to others that I’ve shared this info with], but seems that it doesn’t affect me I would totally embrace any fun side effects of taking 4 doses of liquid codeine a day – so far, not so fun! Then again, history dictates it – when I had my foot surgery I called my surgeon and cussed him for not giving me enough codeine for my pain management. He informed me that I was already at the legal limit – So I informed him that I will be supplementing with a spliff 🚬 [they really need an appropriate emoji! Apple take note!] and Johnny Walker Black 🥃 to help it effects along.
But it does bring on the constipation so I’m very much into the prunes and leafy green veggies and I keep a shit 💩[my fave emoji] journal.

💩 On the constipation note – if you’re ever in a serious pinch, I’m talking the kind where your legs are getting cramps from sitting on that throne and knowing something wants to come out but that shit is just stuck. Far-ughing [Farting + coughing] works – tried and tested, I am the official test case. The more vicious the cough the more effective the anal response.

🛏 Changing my bed linens – duvet, 4 pillowcases, fitted sheet including removal of the dirty set is tiring AF and I have to take a break 🌬. Changing my sheets requires a cup of tea ☕️ in the middle! But it’s now a benchmark and the day I can change my sheets without my tea I know the lymph nodes in my lungs have deflated and are no longer at inflamed 400%.
Most household chores require tea breaks, at least I can still do a perfect paint in under 1/2 hour – feet & hands. 💅🏾

🍽 Eating is tiring.🤬 So not only have I lost my sweet tooth 🍨[which is causing me great distress – Sarcoidosis is my Husband, but my sweet tooth is my smoking hot lover of 20 years who I can’t enough of and is always at my beck and call] I can rarely finish a full meal which leaves me feeling deflated and sad for the food looking up at me on my plate. And red meat is on the avoid list 🍗 🥩 😥

🥃 🍷Also, on the avoid list – alcohol [for the most part I have] but as my doctors are fully aware, I will take their advice and listen to their knowledge but it’s super important to me to be able to maintain some semblance of my single life [aka pre-new Husband]. So I will be imbibing ever so often to keep my body aware that this is a welcome friend and not a foe to dispel and freak out about.

🗣 Too much consistent talking brings on the coughing and the shortness of breath, which I’m not mad at – now instead of me having to tell people I don’t want to talk to them anymore, I can say I can’t and they are apologetic to me! **winning!!** It also becomes pretty obvious when my words get caught in my throat and the cough starts to take over mid-sentence and I splutter and spit all over them when I try to keep any of my symptoms at bay. So they are probably happy to let it go and I love it, because well … people. ugh!

😷🤒🤧 New symptoms pop up with no warning, old ones become a little more quiet or they get a little louder if they want some attention.
Are my night sweats a fever or just my night sweats? I feel warm all the time. Is my fast heartbeat my heart working harder than normal, pretty much as it has been for at least the past 2 months, resting heart rate of 120 or is it that my heart is about to beat out?
I think my cough is now bored of the codeine and is resurfacing – we’ll see what goodies my special kids clinic [I now have to go to Old Faithful [the hospital] once a month for full workups @ the Sarcoid clinic] turns up this week. It could be a simple cold acquired from the world, recent mornings have been plagued with some serious deep green and mustard yellow blobs out my nose and mouth. But how do I know? I’m pretty shit at paying attention to symptoms anyway and now this minefield that I have to navigate to deduce what is my Husband feeling neglected, what is a new germ invasion, what I should call my doctor’s about, what I go straight to Ole Faithful’s A&E … ugh! no bueno.

👸🏾 The funniest part is I’ve never been more ill in my life but people keep telling how good I look. That’s thanks to me having to drink at least 4 litres of water a day otherwise I’m woken up from my sleep by dry throat coughing, my skin looks great. Being vigilant about putting clean foods into my inflamed body. And losing weight without trying… all thanks to my new Husband. I think they call this the honeymoon period. 😍

🛌 The worst part of all of this, the thing that makes me really feel like I’m literally dying is SEX.
Tried it and it just doesn’t work, like not at all.
Him on top feels like he is crushing the life out of me.
Me on top feels like my lungs are going to burst out of my chest and not in an orgasmic way.
Slow and steady on our side discombobulates my breathing patterns.
So my fuck buddy has become my housekeeper – after our 3rd failed attempt I decided to not waste good manpower and got him to vacuum my flat, hangout & fold my laundry because those tasks require more than one tea break. I still do my dishes, [the dishwasher is for storage] it’s my thinking time. My mother would be proud.

So in short, I’ve got a Husband who will never leave me but behaves like a petulant child at times and at others makes doing all the household chores more difficult cause he gets in the way and he doesn’t even reward me and my now once-again-skinny vagina.
Kinda reminds me of this brilliant meme my mother sent me …

This is going to be a bloody boring recovery journey! I hope I get better drugs. 💉

⚠️ PS – if you have an impromptu crazy fever, shortness of breath, a rash, and dropping weight – make sure and get your doctors to put sarcoidosis in the diagnostic mix if they can’t get it right after a couple attempts. It’s was always the differential on House – so don’t be shy about telling your docs to do a biopsy. Remember it can affect different organs so not only your lungs.

PPS – I want to send a big shoutout to my mother. The woman who allows me to write honestly on my blog because there isn’t anything that I write on here that I haven’t or won’t tell her. Other than when I’m getting diagnosed for curious diseases that could also present as a cancer – she doesn’t need that stress until it’s for real. Love you KB! The Original Gangster.

Walk good.

xoxo.