u/Cautious-Impact22

That’s kind of it. It took years to diagnose and processed until I went into delusions, mania, paranoia. I began having hyper religious obsessions, seizures became more and more frequent. And it took 3 spinal taps, 4 blood patches, dozens of admissions, and I almost died.

And now i’m being treated with IVIG, Cellcept, Prednsione, and Plaquenil.

I finally got off seizure meds yesterday for the first time in years.

It’s been… a story worth telling.

Hi all.

I got a bleeding ear infection and pneumonia at the same time while on my CellCept so we had to pause it and put me on two antibiotics.

I feel so locked up, claustrophobic in this house. I live in Texas and it’s sunny, my family is out and active doing their lives but I’m stuck here. Again.

I just feel so sad.

(Photos of his coffee set up are on my user profile because i’ve posted this a few places hunting for help).

When I met my husband, we thought we understood my health at the time I was diagnosed as an Epileptic.

I developed seizures about a year after I got out of the Army and they did know why but they blame previous TBIs.

Because I’m a veteran, and the only care I had was through the VA, so when we got pregnant with our son, we thought it was safe.

But then everything with my body broke down.

I had a pulmonary embolism, chronic illness (repeat pnemonia being the main one). And then, they discovered a hole in my heart, an ASD shunt.

The pregnancy pushed that hole open (from the blood pressure and I have a “hyper-mobile heart) and suddenly, my blood wasn’t oxygenated. I was on Lovenox, portable oxygen and wheelchair-bound, and it just kept getting worse.

My memory was horrific from the seizure meds. I was trapped in hospital admissions, as soon as I got out I’d be like fucking Magikarp flopping on the ground seizing all over again..

And through it all, my husband became a single dad for a while.

He took leave a lot, juggled my specialist appointments, stayed by my side through everything. The cancer centers (they thought I had a tumor but it was scar tissue from multiple TIAs), seizures, strokes and cardiac events.

He even held our son to me so I could breastfeed while lying flat because I had 3 spinal taps and 4 blood patches and they made me lay flat for a week on it because the patches weren’t holding..

So he would have to bring me food, water, meds bedside. It was just awful the poor man.

After all that, the good news is we did figure it out. We discovered I was born with a primary immune deficiency, something the VA missed for years. Because it was missed for so long by blood brain barrier was compromised and i developed CNS Lupus/Autoimmune Encephalitis.

Which means he still had to help a lot. Every 2 weeks i’m stuck to an IV pole for two days unable to help with our son and daughter.

Without him, I wouldn’t be here. He sold things to get me the care I needed, and he put his entire life into becoming a fighter pilot he put his career second to save me.

So if you ever wonder with all the bad news you see are there any good people on this planet, here’s proof. He’s a hero.

Now that you have most of our story, I need help finding this guy a gift.

He like bespoke things. Niche and uncommon. He like techy and gadgety things. And coffee.

He’s a feminist so he doesn’t like gimmicky dad stuff or stereotypical bro-guy vibe things. Like those ugly ass tactical diaper bags, that’s not him.

I attached photos of his coffee set up, I honestly don’t even know what everything is only that i bought it lol. (For this sub the photos are on my user profile page because i posted this two other subs looking for ideas).

If you can help previous gifts were custom knife, portable dual screens for on the go work, bone conduction head phones, ember mug and this entire coffee set up.

Hey Friends.

My dx is CNS Lupus. My current treatment is IVIG every 2 weeks (because I also have Primary Immune Defiencey due to a IEI or Humoral defect), Plaquenil, and Myfortic. We’re just now finally weening me off of seizure meds (Briviact) and heart med (Verapamil). With the brain and spine swelling being controlled I thankfully haven’t had a stroke, seizure or major cardiac event in over a year now.

Unfortunately we still got me on pred for another several months as we watch my labs on Myfortic.

I should be in a better mood but getting more stable has made me want to be outside and apart of the world more.

I’m fucking sad and claustrophobic trapped inside.

The sun… I just cannot put into words how powerful its impact on me is…

I thought it was all in my head.

But it’s like it sucks all the energy out of me. I have kids and after dropping my son off at daycare, by the time I get home I had been working on going on a daily walk.

But as of last month the UV has turned the fuck up and the heat too.

Today on my way back from dropping him off I looked at my dashboard and it said 80 at 8am….

I still did my walk because it was overcast, I did my step into the shower naked and spray sunscreen all over, then i slather my face in sunscreen, wear a UPF jacket every walk, sunglasses and baseball cap.

My car has ceramic UV tint, even the windows in my house all have UV filters applied.

As long as I’m good about daycare to car, car to house, house to various doctor back into other indoor space Im fine.

But i’m also not fine.. Im sad.

I’m inside all day.

My husband is still in the military so if we could move we would move. And our next location (next year) is coastal so not much of an improvement.

After that walk today I just laid down and slept for 3hrs.

This weekend i didn’t step outside even once and I felt great. I was playing around the house with my son, playing hide and seek, just higher energy.

But when it comes time to go outside i just can’t. It cooks me.

It’s really screwing with my mental health.

Idk how to keep feeling happy when I feel so confined and knowing this is only the beginning. I feel like i don’t really see it improve until October… I kind of want to cry.