Day 3: Wordless Wednesday… As If!

Day 3’s prompt is called Wordless Wednesday. Wordless?  Psssssh!

The folks at WEGO would like for us to “Post a picture that symbolizes your condition and your experiences.” But the saying is true for the most part, “A picture is worth 1,000 words.”

Here’s the problem, I really haven’t taken any pictures or allowed any of me looking my worst, which is basically how I feel these days. For Pete’s sake, I’ve avoided my significant other for the past 6 weeks … and I can only get away with that for so long before he grows tired of it. 


This is April 1, 2013 - Remicade Loading Dose #2.
I came in pretty dehydrated and sick, started to pass out when the vein blew on the right hand (ice packs people they help bring you out of it fast!), and later blew another vein in the left hand.  

[Editor’s note: I know I have to have a few pre- and -after moon face pics, just a matter of hunting them down. If I do, I’ll update this post.]

 

Day 2: Day Late, Dollar Short – Thanks Arthritis

image

Introduce your condition(s) to other Health Activists. What are 5 things you want them to know about your condition/your activism?

On April 1, I had my second loading dose of Remicade. Part of the pre-dosing mix is some awesome IV Benadryl (better than the best Tequila money can buy, and no hangover!) and a steroid I cannot pronounce nor spell. With that little taste of steroid, woo, let me tell you it can have a person flying for 24-36 hours and you feel like you could hit a couple baseballs out of the part (just ask the brothers  Giambi and Canseco).

Eventually I crashed somewhere around Tuesday afternoon through most of Wednesday (today). Sadly, when I woke up today my fingers were swollen and stiff courtesy of the arthritis I’ve developed from the inflammation branching out to other parts of the body – either condition can contribute to the stiff achy joints, so I can’t really point a crooked-swollen finger at just one.

So now, here I sit scrambling to get my Day 2 and 3 posts up, whilst brainstorming Day 4. Good times, kids, good times indeed.

Without further ado, here are the “5 things I want you to know about my condition/activism,” per Day 2’s prompt.

  1. IBD, regardless of the severity of the disease can be very isolating. You grow a metaphysical umbilical cord to your home, because being ripped away from your comfort zone, which would be your home’s restroom, is one of the most nerve-racking things that can be done to you.

  2. Hashimoto’s Thyroiditis, is one of the most thoroughly confusing thyroid diseases I’ve encountered. Not that I’ve gone on a mission to collect thyroid diseases, but since learning I have this autoimmune disease I wanted to be prepared. The reason Hashimoto’s is so very frustrating, is twofold:
    *Not even the leading academics involved in setting the standards for the endocrinology community can come to an agreement on the proper thyroid hormone levels necessary for someone to function and feel well. 

    *These same “experts” cannot agree upon whether patients should be treated based upon symptomology and levels, or levels alone, or if synthetic hormone is better than natural desiccated or vice versa. Hello frustration station.
  3. No, sorry. I’m not interested in that article you read on some hippy dippy website about the new trendy diet… like the one that supposedly cured so-and-so Crohn’s by eating different types of wood chips aka mulch. Juice cleanse you say? Yeah, no thanks. Why? I have ulcers lining the small bowel, and my large intestine has more scar tissue than a vital organ should have.

  4. Contrary to popular belief the following are not true:

    *IBD patients can in fact thrive in a fast-paced and-stressful environment, when healthy; yes stress can contribute to triggering a flare, but we are talking huge stressors like a dying relative

    *Meditation, yoga, and chriropractic adjustments are great but they are not a cure

    *What works for one IBD patient may not work for another

    *No, not every IBD patient drastically drops 50 lbs every time they flare

  5. We are closing in on 8,000 people on our Facebook page and every question asked to us as administrators is given careful consideration, research, conference amongst one another, and empathy before we respond. We can’t help or make everyone happy, but I, along with the other admins try our very best. And holy balls, 126 away from 8,000! [Totes not bragging, promise.]

Day 1: I Write, Therefore I Am …

Okay, this is not quite what Descartes had in mind with his “Je pense donc je suis”  statement [I think, therefore I am], but maybe it’s a close second?

Yeah, probably not.

Perhaps I’m participating in the WEGO Health Activist Writer’s Month Challenge, because I have a fancy Journalism degree from a rather lovely university (Go Profs!), or it would be considered a waste if I stopped writing, or I’d have a gaggle of disappointed mentors and colleagues… or all of the above?

Now we’re getting warmer.

Glutton for punishment?

Totes, am.

When my illness(es) [Crohn’s Disease and Hashimoto’s Thyroiditis] sidelined my career in the fast-paced and rarely forgiving marketing world, I was in a full-blown burn out from life, work/writing, editing, reading, anything to do with concentration and words (this is also known as Thyroid Fog). These feelings put me into a perplexing situation, because it was at that point in time more than ever before where I needed to use my best skills and research my ass off. My health depended on it.

By June of 2012, I began a quest that so far Google has not solved. Seriously, it’s shocking. I’ve joked for years about one day hitting the end of the Interwebz, but who knew that day would have come so soon?

It definitely wasn’t this girl!

So, let’s get down to brass tacks. Why did I accept the WEGO Health Activist Writer’s Month Challenge?

Please refer back to said admission of being a glutton for punishment. Seriously though, there were two very important reasons:

  1. Since my Hashimoto’s thyroiditis diagnosis, in April 2012, I have only been able to find a handful of patients who have IBD and Hashi’s, but either their Hashi’s is under control or they are not currently undergoing a biologic treatment such as Remicade or Humira

  2. As a professional writer, I do indeed get offended when I see patient-facing news organizations providing sub-par IBD news stories from writers who are not patients or information that is slanted toward a personal agenda (eg. Eastern vs. Western medicine); this is how I stumbled into writing and editing for a couple of health news platforms

I adore working as one of the administrators for the IBD support page Facebook.com/ItTakesGuts, as well as a behind the scenes helper outter (yes, I have my own language when in Blog format) for other IBD foundations and support groups, and felt this challenge would not only be beneficial to push myself back into writing more under a deadline, but also a great way to provide informative content for the It Takes Guts community.

I also felt this was the perfect avenue to try to gather data to confirm or destroy my hypothesis — “Biologic treatments will aid the treatment for someone with an unruly case of Hashimoto’s along with their other autoimmune illness the treatment was actually intended for.” And by unruly, I am referring to my thyroid panels that show up as the complete opposite of what makes sense to conventional Hashimoto’s wisdom.

In a little under 7 weeks, I will take my first thyroid panel since starting the loading doses for Remicade and cannot wait to report back my results. Until then, I’ll be plugging away at my very first #HAWMC!

Top 10 List for Starting Remicade: Things I Won’t Miss Once in Remission

Today is the Big Day - Medical Clearance to start Remicade (possibly right after the doctor’s appointment).

I have to be at LabCorp by 7:30am, then head home to try to eat, hydrate, and let my insides decimate my spirit a little more (kidding about that last part, kind of), before heading to the GI/Hematologist’s office for the 11 a.m. appt.

Although a beautiful drive, it can be a bit intense if the guts are acting up. There are 12 miles of highway that runs over Tampa Bay and there are no exits, just water on either side of the highway. 

On to the Positive:
In less than 12 hours, I could be getting my first Remicade infusion; my cough is now tolerable and manageable thanks to Burt’s Bees Throat Drops (yummmm), which makes me hopeful that the hematologist in charge will give me the thumbs up!

Without further ado, here is my Top 10 List of Things I Won’t Miss Once in Remission:

  1. Having to hightail it to the bathroom mid-meal once, twice or three times; after the 4th I usually give up
  2. Skin ulcers, unexplained hives and rashes
  3. Moon face!
  4. Canceling trips to South Florida, because the 4-hour drive (with several stops) is mentally draining; I miss my friends, I’m missing my nephew growing like a weed
  5. Butt Burn
  6. Risking contracting every single strand of Hepatitis from unkempt, disgusting gas station and restaurant bathrooms
  7. Canceling plans to go out for drinks or dinner with friends, b/c I’m too scared of being in the middle of somewhere and have an attack
  8. Feeling like a hermit, because it’s exhausting to get up, get ready, dressed and head out, let alone do whatever it was I set out to do so I just don’t go
  9. Excrutiating joint pain and inflammation
  10. Feeling defenseless to Crohn’s

I have so many plans that I want to start working on once remission looks possible, like working crew for Get Your Guts in Gear in New York this coming June and actually getting to hang out with my family friends without fear of the unknown…

I also want to start getting some science pre-req’s under my belt and find a decent nursing or health administration program. And if I decide against returning to school, maybe, just maybe get back into the Internet Marketing or Journalism game in a full-time capacity. Seriously hoping the potential for life in remission is as full of possibilities as it was the last time I was able-bodied.

Q:Hey jaime, I've been reading some of your stuff on your blog and wanted to let you know that if you never need someone to talk to you can just vent to me about your disease. My boyfriend, the love of my life, has crohn's disease and were trying to raise money for ccfa. If you would like to read his story you could just go on my blog and see my post thank you and i hope god gives you the strength to keep going!

imgoingtothetop

Hi there. Thank you for your support, and for supporting your boyfriend. The CCFA is a fantastic organization and they have so much to give. I wish the same for you!