nine hundred and eighty-eight.

   \Post 08\ 10.05.2025

photo credit: moi ❤️

Hello waitwiah family! I hope all is going well, considering, you know…

I have been DREADING writing this post so much it has taken me months to do so. But here we are.

This is a long one, I’m sorry….. 🥲

 

I recently took an amazing trip to Seattle and met one of the greatest humans in existence. Jesse Mercury, host of the Major Pain podcast (https://majorpainpodcast.com/), is genuinely out here trying to help people with chronic illnesses, rare diseases, and undiagnosed illnesses feel seen. I was recently interviewed on this podcast and it was such a great experience. I felt heard, seen, and a sense of community. It was nice not feeling crazy for a moment. I listened to his podcast while in the hospital, on the way to work, just before bed, etc. It was really helpful in lessening the isolation I felt going through these tougher times. So if you are also going through something even remotely similar, I’d recommend you give it a listen! Also, Jesse is hilarious and there is never a dull moment on the show! ✨

Anyhoo – because of Jesse, (if you’re reading this – thank you x1000000 for helping me with my appointment, especially during!) I was able to meet with a great doctor who was interested in helping me figure out my diagnosis. She had a bunch of great ideas and ordered a bunch of tests! So stay tuned y’all, ya girl may have a diagnosis soon! 👀

After meeting with a spitfire of a doctor, I was able to sight-see and do real touristy things! I was finally able to see the Space Needle and explore the city everyone thinks I should move to. Jesse even helped me push the envelope (he probably doesn’t know this haha) in terms of doing physical activity, so much so that I was able to get more sleep than I’d gotten in WEEKS once I got back from my trip. It was a joy to meet such a wonderful person, to have real fun on a trip, and TO BE TREATED LIKE A NORMAL PERSON! 😭

~(This is obviously not sponsored, but if you want to hear more details about my story or watch my interview with Jesse, the episode is available here: https://majorpainpodcast.com/doctors-ignored-alias-mystery-illness-until-it-was-almost-too-late/)~

 

Now onto some of the “less positive” things…

I have been feeling really down lately. REALLY. DOWN.

I’m struggling financially since my job decided my accommodations were “unreasonable” (unreasonable= a 4-day work week and not walking over a mile every day…), my Medicaid coverage is delayed because there is a bit of a government shutdown, and on top of that, I have interviewed for over 2 dozen jobs and have not been hired yet.

I just want this illness to be figured out so NO ONE has to go through what I continue to go through – and for this long! NO ONE should have doctors give up on them. No hospital board should get to say patients aren’t allowed to see other physicians or threaten to take DISCIPLINARY ACTION against physicians who want to take you on as a patient. Personally, I think that’s a bit much, but I’m really just a girl, you know?

One day this happens more often than I’d like to admit I really woke up and did not sleep for over 50 hours. I simply could not sleep. My muscle spasms have been on next level and even worse since starting physical therapy; it knocks me out for a full 24 hours. Not to mention my chest pain, abdominal pain, and worsening fatigue has been proper kicking my ass too.

I feel I have just been getting beat down in every avenue of life: new chest mass, higher pain levels, NO HEALTH INSURANCE (and the monthly cost of my medical supplies is more than monthly rent for my 2 bedroom apartment), missed a rent payment for the first time in my entire life, it takes way longer for me to recover both physically and mentally, there has been no money coming in for months, no job after interviewing for 4 months, increasing insomnia, etc… I’m feeling pretty shitty at this point.

It’s one battle after the next and I do not have the energy to keep doing this. I’m not sure how to keep this up for very much longer… It’s so damn taxing emotionally, physically, mentally, shit… actually, it’s taxing monetarily too. I WON’T PAY OFF MY MEDICAL BILLS UNTIL 2028 😂 And that’s if I don’t see another doctor until 2028…

I started thinking, “well if I would have went on hospice none of this would be happening.”

 

I had no choice but to call the people. Yes – those people.  

I felt so much shame for feeling so low.

 

I know that I don't want to unalive myself, but I also cannot imagine going through this over and over again for years to come. See the problem?

 

In moments like these I think about my two main goals in life:

1.       Figure out this disease process so people going through similar situations can get the help and care they need and deserve

AND

2.       Restore people’s faith in the healthcare system by providing exceptional care as a clinician and researcher

But every day it gets harder to see myself accomplishing either one, as they are equally challenging.

Of course, because I love torture, I choose the 2 most difficult things in the world to accomplish before I skedaddle. I’m lucky to have a pretty decent support system to help me. However, there are some things that others cannot help you with… but you still need help with those things for some reason? It doesn’t make sense, but that’s life. Life right now doesn’t make much sense either. Let’s not even mention the state of America or the state of the world in general not making sense... 😅

 

How do I bring this home? “Where is the positive spin you’re going to put on this narrative?”, you ask.

Let’s see… How about – “yOU’D bE sURPRISED aT jUST hOW mANY pEOPLE aRE rOOTING fOR yOU!”🫠

Okay, that works. It sounds cheesy, because it is, but it is still very true. There are people you haven’t even met yet who are hoping you accomplish your goals and live out your dreams! Crazy, right? I know.

Here is another thought: there are likely more people rooting for you than against you.

I learned this quite recently. It may not seem like a big thing in the moment, but when you are in the trenches of the dark places of your mind, try to think about that. Even if they don’t understand your battle, they still want you to win.

It’s hard for me to think about sometimes too, especially in those moments alone, after days without sleep, in the middle of a pain flare, in the back of an ambulance, laying on the operating table, when I’m unable to walk, or while getting carried out of my office on a stretcher for the 5^th time that month... you get the idea.

When you have a brief moment to yourself, remember you don’t need to be strong every day, hell, or even most days. The only thing you need is to know you are never really as alone as you may think.

DON’T BE A HERMIT LIKE ME AND CRAWL INTO A HOLE AND SHUT EVERYONE OUT FOR DAYS OR WEEKS AT A TIME EITHER!! 😤

 

Ta-ta for now everyone. Remember: you deserve the world and then some! 

 

And if you need to, PLEASE CALL “THE PEOPLE” OR YOUR PEOPLE. And no – you are not a burden.x ❤️