#pillcamsb2

[prettyrottenguts]

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A post shared by Jaime (Weinstein) Holland (@slightlyjaided) on Oct 24, 2019 at 2:25pm PDT

Happy 7 year anniversary to getting the vindication and validation I didn’t know I needed!

[prettyrottenguts]

S*** Just Got Real - I've Got Pretty Rotten Guts

Here it is, my first real, seriously, real post for a silly little blog that was supposed to chronicle my treatment for Crohn's Disease and Hashimoto's Disease. Over the past few months I've been noodling around with Pretty Rotten Guts' concept, setup, and lastly its launch.

So, here goes everything!

The original plan was to start blogging as I embarked upon this new journey into the world of Biologic treatments (Remicade or Humira) for Crohn's. Plus, there really isn't much data if any involving how Hashimoto's is affected by medications used to treat other illnesses. I figured this would be the perfect outlet for whatever was going to happen; the good, the bad, the ugly, or in my hopeful mind -- the amazing!

But, and there always seems to be a but, due to circumstances beyond my G.I. Specialist's or my control (thanks for nothing insurance company who shall remain nameless; what am I paying $200 a month for exactly?!), I didn't get to start treatment in October, November or December of 2012. I didn't get to get back to the life I've worked so hard to create and maintain.

What I did get to do was: sit inside of my own head a little bit too long, do a little bit too much worrying (I'm a professional; references available upon request), not work at the pace I am used to, realize my once insane ability to go-go-go went away on sabbatical without leaving notice of return, and got to watch too much of my savings go toward things like anesthesiology, pathology, and surgical center co-pays, all the while watching my Crohn's and Hashimoto's diseases run rampant without abandon or show any regard for my well being. How rude!

I'm sure by now you are conjuring images of Debby Downer and are thinking this all sounds horrible, right? Well, the latter half of 2012 wasn't all bad. There was a lot of positive that has come from this less than desirable situation like finding an amazing support system that started out with one person (Sara), and then another of her friends, and then another, and then Aaron, Marisa (with one S), and another Sarah (with an H). This chain reaction just started to occur and it's been nothing but amazing since.

By the time December 2012 rolled around, I was still clinging to a tiny bit of hope to start Remicade or Humira treatment; I didn't care which anymore, I just wanted to get better. What I didn't know was why it had not started yet (cost).

What I did know was that by late November my results were in and we finally had a visual of the infamous diseased portion of small intestine that has plagued me for more than 16 years. It was all thanks to an amazing technological advance in medical science called the Pill Camera Endoscopy.

Talk about a hard pill to sallow. (har har) [Note: Click on the image to see my Nurse's hand holding the PillCam SB 2 in all its glory!]

Once the images of the ulcers were shown, printed, and presented -- I jumped for joy and got strange looks from my G.I. and my mother.

Whatever, those pictures held 16 years of anguish, sickness, and vindication.... Shit just got real -- I've got pretty rotten guts!

Once we resumed our conversation about the images my doctor printed and the ones she didn't, she then thanked me for giving her a record-setting 2-hours for the camera to go through the entire small intestine (average time is 8 hours). You see, you are hooked up to a mini computer that uses Bluetooth technology to capture the images during the expected 8-hour long intestine travel. Your doctor must sit in front of a computer and watch the pictures, track ulcers/abnormalities and their location. It's not like they can devote an entire work-day to your video, so this process can take a few weeks. But my amazingly pretty rotten guts gave her 2 hours of prime viewing time. Way to go, Jaime!

For the record, despite how sick (and incapacitated at times) I've been, I've kept the majority of my friends and family out of the loop. Yet, some how two people I thought I would never ever ever ever (thanks T Swift) speak to again are around... and have been supportive. I'm grateful.

Friends and family may see a bitch of frustration from me on Facebook here and there, but I've kept the bulk of the details and facts tucked away in a box at the top of a closet where short people like me cannot usually reach.

So here is the reality, I really haven't left my house much in the past 7-8 months. The majority of driving that is done in my vehicle is not by me. It's been a friend or family member doing the driving. When I do finally venture out on my own for a big event -- and by big event I mean like a few hours out with a friend to a nice restaurant I really do not get to own what I eat (I rent my meals these days), or a two hour jaunt through the mall with Ben -- it takes an act congress to help me get it together. This process usually entails staying in bed for 3-days straight in order to make a full day of something and the right makeup, right hair products, and something to help me cover up where my hair is either falling out or struggling to grow back. I'm lucky to be blessed with thick curly hair, but with treatments looming (woohoo!) the affects can be positive or negative for hair. I'll deal with that later. Whatevs.

The past five weeks have been surreal. A good friend passed away unexpectedly, and I flew to NY. I suppose timing is everything, because I had been on a sleep bender that was going on three days. I powered through the last-minute trip to NY, my stomach doth protested slightly but my steroids and Valium kept it livable. And within days of returning home from NY (which included lots of bed rest) I was traveling south to my cousin's home for the New Year holiday.

But alas, this first post is not based upon the subject matter I had truly intended. So, within the next couple of months I hope to have a (Biologic) Re-launch, if you will. Because another Imuran -- near death -- experience would suck.

Until then, I will chronicle everything from the ridiculous hoops one has to jump through even with insurance to get Remicade/Humira, the types of forms/grant applications you along with your GI and Oncology staffers have to deal with, the cost (even with semi-decent insurance $1,500 every eight weeks or close to $1,000 monthly on top of insurance premiums and co-pays), as well as what past, present, and future, Gastroenterology, Cardiac, and Endocrinology specialist visits mean in terms of achieving remission. As well as the potential and almost unavoidable side effects of whichever treatment I get sponsored for.

Kids, it truly takes a village. And I've got a really strong one working on things in 2013.