Leela Lives With Lupus

06/05/2024

Please accept my most sincerely apologize for having neglected my page for all 2 months. I've been sickly the entirely of it and just couldn't. I don't want to just report every day "I feel awful and can't sleep" it just feels so redundant. I missed Sjogren's Syndrome months in April and Lupus month in May, which I feeling awful about, I'm going to educate yall and share facts (and my personal experiences too). So...to wrap it up....sorry I suck at communicating and i plan to do better from this moment forward.

Much love,
Leela

01/21/2024

Big Daddy and Ashy took me out for my upcoming birthday. We watched Migration and went to Big Whiskey for dinner (and fish bowls for me). I'm sure tomorrow will be rough, as I'm positive I borrowed spoons to enjoy my day, but there will be no regrets from me. Love you guys, thanks for following along on my journey Leela's Lupies 😘

12/07/2023

😂 me today

12/07/2023

I have a hundred things on my to do list and woke up feeling like I have lupus or something 😒 The last few days my oxygen has ran low at night. Largely in part to me not keeping it on enough during the more active parts of my day, I'm sure. But, with low oxygen, achy hips and joints, and all my other BS.... I've been up every 2 hours and the sleep in between hasn't been restful. So, today with my oxygen on, it's still dropping fairly low and staying, then going up for a bit...and repeat process. The headache and foggy feeling has me fighting to get very far off the couch so far today. On top of that fun, my lasix (is that the right spelling?) don't seem to be able to keep up and I'm fighting swelling in my feet and legs. And my mind says I need to do this, this, and this.... but my body says take ya seat and hush 🙄 Busiest time of year....I need extra spoons 😂

11/27/2023

In true Leela fashion, I COMPLETELY forgot to update after my pulmonology appointment almost a week ago. My memory is 🐂💩 and I apologize. The granulomatous disease might be a problem. He's keeping my meds and oxygen prescription the same and we'll HRCT again next October to see what changes are happening. Unfortunately, not anything we can fix, but it could be worse. Paraseptal is the most rare of the three types of emphysema. It's similar to a lung honeycombing. Pray it doesn't decide to get ugly quickly. (Obviously if I have worsening symptoms I can make an appointment with Dr Bailey, but the CT in October is my next scheduled appointment.) For now, continue doing exactly what I'm doing

11/27/2023

Getting the mess that is my spine checked out.

11/21/2023

10/31/2023

Yesterday Meghann (APN) called about my scans from last Monday. I seriously don't remember everything she said besides ",it's really gnarly in there, you have different things going on from different diseases." She referred me over to a Neurosurgeon at Washington Regional (he's supposed to be top tier). Hopefully his office calls soon and we can get this back surgery going. I'm dealing with a level of pain like I've never experienced and it's affecting my mobility (especially trying to get out of bed).

10/26/2023

~💜 TJ