It’s been a while since I wrote, and I’m too tired to apologize. Take comfort knowing I feel guilty. Always.

I wish I were a machine and could write all the things I want to write. I want to reach people and offer resources I’ve been given, and I felt a fire under my belly for a long time. But then I kept on getting emails from SubStack stating my stats. And on average, only 3 people actually open my newsletter. So, it deflated me, and I don’t feel like I’m doing much good here.

THE ROUGH NEWS

Speaking of feeling useless, it seems to be my new state of being.

From December through January, my body seemed to be on a complete pain fritz. My back was in agony, and between the pain and the pain meds, I couldn’t concentrate on anything. No logical reason why, but my muscles have learned to spasm in ways I’ve certainly never experienced before, and no other human should either.

Then, in mid-February, I was hit by the flu (thank you, worthless flu shot). My boyfriend said, “Don’t worry! It’ll be over in a week, and when people live together, there’s no way of getting around it.” Mmm-hmmm. He’s never experienced me being sick (with a normal thing) before.

Because these things never only last a week for me. I’m pretty sure there are creatures in my body that wreak havoc on a normal day. But then, when a virus hits, they lose their fucking minds and just destroy, destroy, destroy.

A MONTH AND A HALF LATER, and I was still struggling with immense fatigue, the kind where I couldn’t lift my arm to braid my hair, and I had to sit down after walking through the house. The worst problem was the low blood pressure that just clung to me like a rabid dog. My normal BP is low 100s/70s. My BP became consistently 80s/40s. I simply could not eat more than a few bites. I tried to, but immediately ended up with overwhelming nausea or stomach cramps. I was constantly lightheaded, and every time I stood up, the room would spin. Sometimes it was bad enough that my vision would start to blacken around the edges, and I’d hear a buzzing roar in my head. I’d crumple on the floor before I could pass out because who knows what I would have broken then. I was afraid to leave my house and to drive. I started having sharp pains in my chest definitely not heartburn), a constant pain behind my left shoulder blade, and my left arm was going tingly and asleep. You know, classic heart attack symptoms. Three nurses couldn’t even hear my heartbeat when trying to take my blood pressure in the PCP’s office.

The PCP, nutritionist, cardiologist, GYN, and gastroenterologist threw out hypotheses like horseshoes:

“You’ve lost weight, and so your blood pressure has just naturally lowered. You just need to gain the weight back.” - PCP

“It must be all the medication you’re on” (even though I’ve been on them for years) - PCP

“You need to eat more protein.” - Nutritionist

Cardiologist: “You’re on some heavy-duty meds, and some of them cause low blood pressure.” Me: “No, sir, those meds are old meds from over a year ago. Your assistant didn’t update them, even though I gave her a list.” Cardiologist: “Oh, Ok, let me see the new list. Ok. Yeah, it must be the prazosin. Why are you taking that?” Me: “I take it for nightmares. It helps me with my PTSD...you know, from last August.” Cardiologist: “Well, stop taking it.”

“You must be anemic.” = PCP

“I’m surprised you aren’t anemic.” - GYN

“Why are you having these problems?” - GYN

“I think it’s your gallbladder.” - Gastroenterologist

“You must be dehydrated. Drink more water.” - Everyone

Every test has come back negative. I’m not anemic or dehydrated, nothing’s wrong with my blood (other than it not moving fast or fully enough), my hormones are normal, my medications are not the culprit, and neither is the weight loss. Jury’s still out on the gallbladder.

The doctors can see the BP data on my phone, but none of their diagnostics have proved any of my other complaints. Well, if diagnostics were even used. Despite my VERY CONCERNING HEART SYMPTOMS, the cardiologist wouldn’t even do a quick EKG in the office.

NO ONE LISTENS TO ME.

This is like my life used to be before I was diagnosed with EDS.

And this is my conclusion: Either the trauma of last August and maybe even further back to the divorce is finally catching up to my body (possible), or it’s from EDS and unexplainable and untreatable (probable).

And just as mysteriously as the low BP came and stayed, it has now returned to normal. Making me question and gaslight my own self.

OTHER ROUGH NEWS

And now that I’m finally feeling better, I had a bad fall last week. I sprained my ankle and wrist, twisted my back and hip, scraped up my knee, and internally bruised my shoulder. The overwhelming pain is back, of course.

NORMAL ROUGH NEWS

I have a full-time job, but I don’t get paid for it. It consists of constant phone calls and emails to medical personnel, pharmacies, medical appointments, attorneys for my Africa civil case and my disability case, agents for my Africa criminal case, contractors for fixing the kitchen (I had two cabinets literally fall on my head) and plumbing, my tax accountant (who didn’t file my taxes until April 14, even though I gave him everything he needed in mid-February), etc. It is never-ending. I rely on no one because I can’t. I am always disappointed and dismayed at people whom I PAY MONEY TO to help me. Despite being sick, I can’t even rest. I am beyond tired. Beyond that beyond. Depression and PTSD just make everything worse.

SUN DOTS

Uh…even if I’m trying to be positive, I honestly can’t say my life is a ray of sunshine. But! I definitely have dappled sunlight throughout. :)

• I feel very safe and happy and loved by my boyfriend.
• I live in a lovely home.
• I have a hysterical cat who keeps me entertained.
• I have a service dog who I dearly love, and who has given me so much (and she is at the end of her final phase of training!)
• I live close to my mom and grandmother and sister and nieces
• I have lovely friends locally and far away
• I went kayaking recently and didn’t hurt anything on me
• I am feeling creative again! I’m writing a poetry manuscript and a fantasy novel. In May, I’m having a pop-up signing for my memoir, Waltzing with Elephants. I’m trying to figure out how to market that better. You know, because like 15 people have read it. Literally. I am also trying to figure out how to reach more people with my Substack newsletter.

I truly do have so much to be grateful for.

FINAL THOUGHTS

I’m struggling, folks. But we all are. I wish life was easier and less painful. I wish I had magic in me. So I could heal and shapeshift into a dragon and protect the weak. Might as well wish there were unicorns who pooped out rainbows for fun if I’m at it.

All I can say to us both is to keep on keeping on, Friends.

P.S. I’ll send out a resource in my next post very shortly. Something that actually might be helpful besides for my whining.