Lupus!?

[lupus-diary]

Every so often I pop back on here to give an update. So here it is!

Over all, things have been good! My rheumatologist is happy with my numbers and I’m for the most part doing well.

Expect for the recent trip to the ER. Lol

I went in with back pain and trouble breathing. (Something I had in 2018 that they ended up diagnosing as either a PE or pneumonia after finding an opacity on my lung. There was never a conclusion.) So just to be safe, I went in and got a CAT and an EKG. Everything turned out fine! The doctor suggests it’s possibly pleurisy (or pleurussy as I’ve been calling it). The CAT showed a scar where they opacity had been which means that the area as healed up.

I did a bit of digging after I got home and found that pleurisy, if not treated, can lead to pneumonia. So… through my own deductions (hi Sherlock) I’m thinking that when I went in to hospital in 2018 for the possible PE/pneumonia it was most likely pleurisy that developed into pneumonia.

All this to say, if you feel like something is wrong. Get it taken care of. Of course, easier said than done. Especially from someone who is finally financially stable. That’s not the case for everyone. And I know that.

In 2018 my hospital visit almost took out my entire savings. This shit isn’t easy and it’s certainly not cheap. But if I had taken care of myself earlier on in 2018 when I was first having these symptoms instead of waiting weeks to do something about it, I could have saved a LOT of heartache, pain, and money.

Tldr: Take care of yourselves y’all

[lupus-diary]

Three good things

I have an amazing new job

When my wife falls asleep on me

I'm finally fully healing from breast reduction surgery!

[lupus-diary]

Reflecting

I don't typically update this page because, 1: there's some very depressing stuff on here And 2: I'm really not on tumblr much. But tonight I decided to read through some of my old posts on here and wow. It made me realize how far I've come emotionally.

I like to block out my first year of college because I was so miserable, I stayed in bad friendships, didn't take care of myself, and was almost failing half of my classes. I didn't have anything to anchor myself to and I didn't want to.

I thought I was fine with getting high and eating hot cheetos and mountain dew with people who I didn't know actually liked me or not.

I thought I was fine with spending time with people that made fun of me, put me down, and made me feel worthless.

I thought I was fine with waking up at 4:35pm to rush out the door and just barely make it to my last class of the day.

I thought I was fine with being taken advantage and never saying no even when I really should have.

But when I met Julia, my life changed.

I realized that I'm worth more, that I deserve to treat myself better and to love myself. To eat better and eat more than once a day. To drink water and that starbucks bottled frappuccino was not an alternative to food.

Of course, not everyone has a Julia. So let this post be your sign. You are worth more. You are incredible and you are a force to be reckoned with!

Need a cheerleader? Shoot me a message. I’m here for you. Seriously.

[lupus-diary]

Hi friends! How's your anxiety?

With all that's going on, mine is at an all time high. And I don't know about you, but my lupus flare ups correlate directly with my anxiety.

Usually I get super fatigued and that's about it. But recently I've also been getting the hives.

I haven't had problems with hives in 5 years! And now they're back.

I've been working with my therapist and trying to find time to just take a deep breath.

If you're feeling hopeless in this sea of anxiety, just know that you're not alone.

I know that's garbage advice. But it's the best we've got.

[lupus-diary]

1.10.2020

We like to think that a new year, a new decade will let us renew again. We like to wait till then to treat ourselves better.

When the first of the year happens, then I'll start working out.

But is that really fair? What if January 1st comes around and you're hit with a week long migraine? What if you end up in the Urgent Care? What if you're late to work almost every single day of the first week of the new year?

Do you just give up and let the worms eat you?

Do you just retreat to your pre-new years attitude?

We make excuses so easily. We let the first of a year, a month, a week, even a day determine how we behave.

Don't let this happen.

Every single second of the day is a new beginning.

Push through your fears of failure, your excuses, and your worries. You can and will get through. Take a deep breath and remember that every moment is a new opportunity to change and to better yourself.

[lupus-diary]

Just a little update

Wednesday night (Aug 22, 2018) I went to the ER for back pains and shortness of breath. As the night progressed, they found a blockage in my lungs. I was transported to a hospital around 5AM, Thursday morning. After loads of tests and blood work they found that I have a blood clot in my left lung. On Saturday night I went back into the ER due to an extreme pain in my head, unable to complete words or sentence, numbness in my mouth and hands, and feeling completely out of it. Once at the ER, they ran a CT and found no bleeding in my brain. I was having a severe migrane due to the stress my body was put under from the week.

The past month has been nothing but stressful. The day we got back the honeymoon, my wife lost her job due to cutbacks at her company, her Grandpa got sick and is in hospital, money became tight, my wife backed her car into mine, and family drama began to arise. I often forget how much of an impact stress can makes on my health. This was the first time I've ever been admitted to the hospital for something lupus related and it was terrifying.

This month has been the hardest thing I've ever gone through.

[lupus-diary]

A few weeks ago I went on my very first “walk to end lupus”. My Fiancée, Julia, accompanied me along with her parents, my mum, and one of my very best friends. It dawned on me that this was the first time i would be meeting others with lupus face to face. Before the walk everyone with lupus took a group picture and they wanted us to cheer. More than anything I just wanted to cry. I’ve come a long way since I was first diagnosed and I am so lucky to be doing so well, but it was so overwhelming to see so many others going through this. I don’t think I’m ready to get up and cheer, but maybe one day.

[lupus-diary]

Update!

It’s been so long since, I’ve written anything. Life has been really crazy, and I honestly forgot about this account. 

So here’s an update (if you interested): I am in my third year of college, I worked on a movie during the summer and the school year has been incredible! I’ve made a few documentaries, a couple of short films, worked on a web series, made a music video, got interviewed for a zine, won a scholarship, won an award for one of my documentaries, and went to the premiere of the movie. 

I moved in with my girlfriend, Julia, and two friends (who turned out to be not so great friends). Julia and I are moving into our own apartment in June. At the end of May I’m going to Ireland to work on a documentary about the Jewish Irish Community and then I’ll be starting my video internship.

TLDR: A LOT OF GREAT STUFF HAPPENED AND I’M TIRED BUT REALLY HAPPY

[lupus-diary]

i’m so exhasted

[lupus-diary]

Other people’s success does not mean I’ve failed

[lupus-diary]

Hi, I was diagnosed with Lupus also, nice to meet you!

Hello! So sorry to hear, I hope you're doing well! Nice to meet you too!

[lupus-diary]

When I forget that it actually is ALWAYS lupus

Me: Yeah I stayed up all night in pain and throwing up

Friend: Aw man that sucks! Are you sick or something

Me: I honestly don't know

Friend:

Me: WAIT. OOOOOOH, yeah. No, it's lupus

[lupus-diary]

The first picture is from May 2013 the second was taken a few days ago. From a puffy ball of lupus to now, I think I've come a long way since last year.  

[embarrassingdoodles]

Chronic illness problems:

Being awake.

[lupus-diary]

Update!

I forgot to mention this last week, but my rheumatologist checked out my results and the white and red blood cells were not found like they were last time. Ok weird, but he said he's still going to keep an eye on it. I'll be doing monthly tests and what not.

Also, I've also gotten back on to plaquenil and so far it seems to be helping.

I'm hoping that sometime soon the word lupus doesn't go through my mind every single day. 

[lupus-diary]

thank god to for friends that keep me going

[lupus-diary]

I had this feeling of dying earlier this week,

 I needed to say everything I could

Do anything I should.

I kissed someone. 

I took off my shoes and stood in the snow. 

I screamed "Fuck the world!" at the bottom of a hill

I danced harder

Ran fast

And felt so alive, yet so numb to the world.

I realized:

No matter what I do,

I'll be here. For right now.