7 Months, 6 Days, 22 Hours, 6 Minutes and 39 Seconds.

That’s how long it’s been since my last blog entry ( I have written and deleted that line about 10 times already). Since then I have added a lot of chapters to my story. For the sake of my brain, below you will find my review of each chapter. Sit back, relax, and enjoy my turbulent stream of consciousness.

Nick Is Diagnosed With ILD (Interstitial Lung Disease)

Rating: 1 out of 5.

32-year-old male was admitted to the hospital for high blood pressure and chest pains. The assumption is this is stress-induced. PSYCH!! — He has Pneumonia. Okay, wait, actually, no, it is Interstitial Lung Disease. [I googled it immediately against my better judgment]

We now live a life of oxygen machines, doctor’s appointments, and a large dose of uncertainty.

Not gonna lie, I am still in a good bit of denial. Is it healthy? Probably not, but it gets me through the days and the weeks and the months. We are now settled into a pretty good rhythm of doctor’s appointments (Pulmonologist, Rheumatologist, Bari—oligist?? [um Bari-otrition??], transplant teams), and we tend to have a good 2-3 month window without getting any bad news. It’s very cyclic and very exhausting. During that time, it is easy to forget how serious things are, and forget that we may not have as much time as we had originally hoped. [Enter the antagonist] But of course, that doesn’t last long, because we go see some “-ologist”, and I end up leaving on the verge of a panic attack crying.

We then get all of the “Just hang in there”, “You can beat this”, “Just be positive” comments, or the “have you tried blah blah blah..” and to be honest…ughhhhhhh!!! I can’t. There is no cure, there is no good outcome to this. It sucks, it’s a big ol’ suck sandwich, and it’s okay to say that. My husband, my best friend, the love of my life, has to live every day wondering if he will see his kids grow up, or worry about leaving me alone, all the while struggling to breathe and dealing with the shame of having to wear an oxygen tank at 33. It sucks.

I don’t always hate the world though. I do eventually get back to normal. Back to the denial, because I see my husband, healthy (needing oxygen, yes, but it’s easy to forget it is there), happy, and I continue to dream. Dream that some miracle is going to happen. And my delusion and I will continue to dream until we can’t dream anymore.

I’m Diagnosed With Autism

Rating: 3 out of 5.

Yes, you read that right, I give it 3/5 stars. Being diagnosed with ADHD the previous year made a lot of things from my past start to make sense. I continued testing and after the most painfully exhausting 4-hour-long exam the results were in.

Aspergers ( or I guess in 2022, since Nazis aren’t really in style anymore, we call it High Functioning Autism)

So, yeah, that makes sense! I remember always having this irrational fear growing up that I had autism. I don’t really remember why I thought that or why I even knew what autism was in elementary school. I knew there had to be a reason why —

  • Why do I not have a lot of close friends?
  • Why do I feel paralyzed in public, but the second I am at home or in my comfort zone I am outgoing?
  • Why do I have a physical reaction to the sound of someone chewing or breathing?
  • Why do I barely remember my childhood?
  • What is wrong with me?

Needless to say, I have spent a lot of time getting to know myself. I had an “aha” moment, I deserve a Golden Globe for my role as “girl who molds her personality to hide the fact that there is something neurologically wrong with her”(If you could please be sure Leonardo DiCaprio presents it to me).

I hid behind a mask, and I was pretty damn good at it. As long as no one got too close to me, I seemed perfectly normal. But I wasn’t happy. The overstimulation I experienced my whole caused serious anxiety. I was trying so hard to make myself fit into this society’s idea of normal. To this day, when I realize my mask is starting to fall, and I am disappointing people, I go into a full-blown anxiety attack.

I find myself thinking do I wish that I could know then what I know now. That I wasn’t just shy, or crazy, my brain just worked and processed differently. I wonder, would I have more friends if I knew? If they knew?

BUT, there is no point in living in the “what if’s”. I have so much to be thankful for. I am healthy and thriving. I have a beautiful family, a career I love, and a plethora of skills from all of the hobbies I have obsessed over through the years.

Lily Had Her Pony Birthday

Rating: 5 out of 5.

Every day for 5 months, Lily woke up in the morning and said “Is today my Pony birthday?!”. She was referring to her 4th birthday party that HAD to be My Little Pony themed.

“Nope, not yet baby. That is not how birthdays work” [Queue the historical fit]

This went on, everyday. Somedays, it would be a whole day affair. Nick and I were so very happy that on the morning of July 3rd we were finally able to put this chapter behind us…or so we thought.

So here we are for the next 360 days – “Is today my Barbie birthday?!”

Leo May Actually Send Me Over the Edge

Rating: 2 out of 5.

The love between a mother and her son is priceless. This boy is all hugs, cuddles, and kisses. He loves to tell me how much he loves me. Ohhh, but he sure does take a special kind of pleasure riling up his sister, and he is SO good at it. He does it with a little grin on his face and giggle in his heart.

Well, that is the short version of the last 7 Months, 6 Days, 22 Hours, 6 Minutes, and 39 Seconds. We are truly loving life though, no matter what get’s thrown at us. I like to remind myself not to mourn or stress over things before I have to. There is no sense in going through it twice. So we laugh, and love, and try our best.