Why did no one tell me how much smelling salts burn?!

  \Post 07\ 06.14.2025

photo credit: anonymous

Hello Everyone.

I hope you all are doing as well as you can be, considering… the crazy state of the world.

It's been a long time. And every time I say I'm going to post more frequently - life starts to life. Again. Like you're getting in your car but you forgot you were listening to the radio really loud, so when you start the car the radio starts blasting suddenly, sending a shock through your entire system. The last few months have felt exactly like that.

 

 

 

 I'll give you all a little glimpse at my life lately:

 

 

Over the last few months I've lost people I cared about a lot. One after the next - like the earth is slowly getting rid of the good people in my life, one light at a time.

 

One week ago today I lost my grandfather. I lost the one person who was willing to set his entire life to the side just to take care of me, willing to move across the country to make sure I could focus on healing and figuring out this disease process. 

He was always looking for solutions and doing research. There was always a phone call or a voicemail with new information he found that he thought might give me a chance at having my life back. And every single time it broke my heart to tell him it was something I had already tried without success or that it was something my doctors refused to look for or try.

I remember hearing the pain in his voice when he told me how sad it made him that I asked for use of one of the family plots; he sat on the phone with me for a bit and took deep breaths. Said he just needed to take a nap. I know it broke his heart, the thought I may not recover from whatever this is, how my family won't recover if they lost me to illness.

 

At one point I thought people may have been over dramatic at funerals; fainting and wailing. Screaming into the abyss. But the sob that left my body when I got the call, that the police found him, feet on the floor, sitting up like he was ready to take on the day... It broke me in a way I had never experienced before.

You know - it's different suffering personal tragedy. Doctors accusing you of faking an illness or malingering. Your care team saying it's all in your head or you're "catastrophizing". Making the decision to pursue hospice. Having what was supposed to be the hospital stay, where an entire team does widespread exploration of your illness, turn into "I don't know what's causing this but we won't look into it further." Being put in a dark room of a hospital for hours while you writhe in the worst pain flare of your life, going in and out of consciousness (this was just just over a week ago).

 

A little less than a week ago I also lost a relationship - but maybe it was lost long before that, I refused to see it. It's not entirely their fault. It's never really anyone's fault with things like these.

 

I needed support through really hard things and they were not always able to provide it and that's okay. It's understandable. It's impossible for someone to be there 100% of the time. Sometimes, you have to be there for yourself. I know that. I've been there for myself most of my life because feelings are not serious or that important in some households. I'm really good at it too, for the most part.

But the times when I was in desperate need of the support of someone who only knows me like they do (or did?), when it really counted to me, when I was sobbing and questioning everything, that amount of support took a sharp decline. It was jarring. So much so I remember thinking how selfish I was for needing anything at all, for asking anyone to be there for me, even my own partner. Why am I asking someone who loves me to show that love to me in the ways I need it? Especially when they have their own stuff? Am I selfish for needing support, for wanting support? It felt like it and every time that happened a little piece of me crumbled away and that piece was put in a small box deep, deep down. But it was fine because I should not want these things anyway and I was already selfish for wanting to be in a relationship in the first place. 

 

Sometimes I just wanted to be scooped up and whisked away without having to ask for it. Real romantic-like.

A call saying, "I'm here and coming up. Let me help you pack a bag; let's spend the weekend in bed watching movies."

Instead, I watched the door and my phone. And I waited for something I already knew wasn't going to happen.

 

 

Illness is hard. Unpredictable. Messy. Confusing. Frustrating. Exhausting. 

 

My therapist keeps trying to hammer into me that Jamie from A Walk to Remember deserved her days with Landon. I always say, "of course she did. But that's different." But I can never explain how it's different, but experience shows that I may not be so deserving, and if I were then things would not be playing out this way. But I did have a Landon at some point and everybody saw it. I saw it. 

 

Navigating chronic illness and relationships is hard. It isn't always hard. That can change in a heartbeat.

Especially when you've already felt the person pulling away. Saying hurtful things or saying nothing at all. Assuming the worst of you when really, you're just in the hospital again. No one deserves that. 

But it's hard to be loved when you don't feel you deserve it and it's hard to love when you feel the other does not want it.  A real mess, right? And which one was me and which one was them? I think each of us were both. And yes, I still love them.

 

They didn't even put up a fight. Didn't even question it. That might hurt the most, especially after planning futures and talking about baby names. 

 

People can move on. People can change. We might cross paths at a different point and be friends or something positive like that. Who knows. 

Will I move on? Do I even want a relationship? Was my original fear proved valid?  Those are questions I'll have to answer another day.

 

 

Anyway, enough of the dramatics. This is still a survival guide, a toolkit for those with chronic illness. 

 

SO WHAT NOW?

 

Well, I'll be channeling the little energy I have into creating a non-profit, a foundation of sorts to help those with undiagnosed illnesses and maybe connecting people with those who have a passion for solving medical puzzles. I have no idea what I'm doing but I can't do nothing. I am not throwing in the towel yet.

 

I will still be actively trying to figure out my disease process by digging through copious amounts of medical records, talking to whoever is willing to listen, trying not to let everything get to me.

I will continue to take notes, monitor symptoms, read research articles, and challenge common thought processes about illness and disease.

I will continue to be a place for people to vent about what is going on with them. (Thank you for letting me listen ❤️)

I will continue to advocate for myself and for others who are not able to do so right now. 

I will continue to have and create meaningful relationships with those around me. 

 

My grandfather wanted me to make the most of whatever time I had left. And I want everyone who reads this to do the same.

 

 

So when your doctor says no to that blood test or that imaging request or that new medication or to that second opinion, keep in mind that no one actually has time to waste; THAT INCLUDES YOU. Use your free will to its full capacity and get creative. There is someone out there who believes your symptoms are real, is willing to do more than the bare minimum, and to break the confines of the box people like to put a disease or illness in. Even if that someone is you, it still counts.

 

 

********and take breaks when you need them******** 😤😤😤😤😤😤

 

 

 

As always, you deserve the entire world and then some. ✨❤️