Pretty Rotten Guts

Holy cheddar biscuits, Batman! Where did the year go? I swear we were just ringing in 2017 and now it’s 2018. As I have started reclaim the pieces of my life thanks to feeling better since starting Stelara, I’ve been taking on a few more small consulting and advocacy projects. Which is awesome. I’m thrilled to be able to continue to learn while doing what I love and help cultivate new communication and marketing projects, all while getting to work alongside some of my favorite people. 

Although there were some pretty awesome highs, like going on vacation in the Pacific North West. There were some pretty low lows, too. Low energy, low thyroid function (lol), low metabolism (double lol), low confidence in certain members of our government (I have to laugh or I’ll cry). However, I wouldn’t change a thing. [Except maybe the government thing. Would it kill you to actually be in your office when I show up with an ask, Rubio?]

2017 was pretty spectacular! Went to Capitol Hill again, attended some pretty stellar conferences and finally got the clearance to launch CROHNicleS. Oh and, you know -- He asked, and I said, “Shut up” a bunch of times followed by, “Yes!”

And although we are only 8 days in, 2018 is already shaping up to be a pretty busy and fantastical joyride of a year. [wedding anyone?] Cheers!

You guys I’m so excited to announce that our CROHNicleS YouTube Channel is now live! This has been a labor of love for so many people aside from myself. What started as an idea evolved into this little project chronicling my journey with Stelara. Three videos are up and more will follow. I hope you continue to check back for new videos. Or you can make your life easier by clicking the little subscribe button. You can view the CROHNicleS at http://po.st/prKAKf, by clicking on the link or copying and pasting it into your Browser. 

I’m super bossy, right?! If you thought that was bossy, here’s the next one... See below for the legal jargon.

Yesterday was filled with Murphy’s Law and most of it was in relation to the aftershocks of Irma. Once a hurricane passes, there’s a new storm to weather – its aftermath. I finished packing and got settled in bed at 3:30 am and let’s just say the arthritis pain WAS REALLLLL. 

Sometimes this murderous looking nugget realizes I need heat and pressure and acts as a living heating pad. Others well, her co-dependence is strong and she knows suitcases = me being gone forever in doggy hours. I would like to get up to get ready for the airport but I’ve been pinned for an hour. 

It’s almost a year since I’ve started on my journey with Stelara, and I cannot imagine having gotten through the past week not being on this medication. I don’t believe I could have said that for drugs I was on in years gone by… In fact, I’m 100% positive I would be dealing with swollen joints and would have been fasting for at least two days in order to not be afraid of living in the bathroom while traveling. I’m also pretty convinced that I would be in need of having to be wheeled through both airports if this was two, three, or four years ago let alone last September.

This morning I woke up and yes my ankles and feet ache, but there’s no swelling from yesterday’s misadventures. Which in and of itself is AWESOME. Despite eating something last night that I’ve never had before (it had hidden onions, which are my arch nemesis), I didn’t have the urge to curl up in the fetal position and cry. Winning! Was I 100% pain-free? Nope. Digestion at times still hurts or at best is uncomfortable at times. I’ll give last night’s dinner intestinal vibes a B+, or A- if being generous.

Today, my goal is to survive flying. This means accepting assistance to get on the plane if Southwest Air isn’t slammed with people who have higher needs than mine and to walk from the plane to baggage after landing.

If you are a #ChronicIllness Patient affected by #HurricaneIrma, there is a Facebook Group @#IrmaPatients established for patients to help get their supply needs met that aren't usually covered by traditional emergency provisions support providers. If you can volunteer to help bring donated provisions to patients in need you can also sign up to do that in the group. If you are out of state, but want to help, there will be lists and wish lists established on Amazon and you can find them in the Group as well - https://www.facebook.com/groups/124455971623051 - there is also a sister Group already operational for #HurricaneHarvey survivors.

Yesterday, a HUGE triumph occurred. At the 12 hour mark from when a rather busy day began, my ankles were still intact. In fact, I walked against waves, trudged through sand, navigated slippery ground and walked around Disney Springs. And as of 24 hours later, my ankles still are bony! I would jump for joy but I’m sore from the wave pool.

Last year, a similar trip left my feet throbbing and swollen from ankles to toes. I had to take several forms of arthritis relief meds and it felt like I was walking on broken glass and shattered bones. Yesterday that didn’t happen; no meds were taken. Sure, I’m super sore and they would help, but without swelling present, I don’t see the point.

Also, I ate the “worst for you” but “best-tasting foods known to mankind” and my Crohn’s-riddled intestines behaved. I cannot be any more grateful to the progress Stelara has enabled me to experience since November of last year (2016). I’m two weeks out from Dose 4 and can’t wait to see what the next milestone will bring.

One month ago I posted Part 1 of this gloriously ridiculous story. Well, life got busy. Better late than never, right? 

Part 1 ended where I explained the circumstances in which I was invited to attend the DDNC, the conversation that took place where I was told by this woman without a stitch of authority that I needed to attend another state’s meetings, and the irony involved in the entire situation...

At this point, I gathered my possessions and hauled off to meet the other half of Team 14B. She, the “she’s very smart, she’s a vet,” and I quickly bonded over the awkwardness of the situation. She explained how Lynn’s service dog had charged at her service dog, and most likely wanted to play but probably needed some more training. My new teammate’s service dog became uncomfortable around Lynn’s. After spending the day with my teammate’s service dog, and then witnessing Lynn’s, I could see what she meant. 

We did a time check to see when we needed to leave. As luck would have it, Nebraska had the earliest of the meetings. How convenient for Team 14A.

I volunteered to go and pick up the folders from a lovely woman I had met from the lobbyist’s office during my last trip. While I quickly downloaded her on the situation, I heard my Team 14B teammate tell Lynn to step away from her before she says “something out of character.” She has sass and impeccable manners. I liked her even more.

I quickly side-stepped back to my teammate’s side and stared at Lynn. She narrowed her eyes and fixed her gaze on me. Once again she stepped into my personal space, and then spat, “What? Are you mad at me?”

Without batting an eye, I turned to my teammate and noted we should leave or we’ll be late.

On the way to the Capitol, I mentioned to my teammate we had a 90-minute gap between our second-to-last and last meeting of the day and asked if she minded my attending the last Florida meeting of the day. We would still have plenty of time for our last meeting. She said she would hang out in the hall while I went in.

All things considered, our Nebraska meetings went pretty well. We were able to hit all of the pain points on the agenda and lace our stories and backgrounds through the Asks. We were also hyper-aware to add in pertinent information for the other digestive diseases affected current laws and mandates, as well as the possible loss of health insurance if the ACA was repealed.

When the last Florida meeting rolled around, I sat back and waited for places to speak. Stories weren’t always getting associated into the Asks, those were the moments that I jumped in and spoke – because, teamwork. 

During this meeting, each of us had an opportunity to share our story to the Aide, as well as how the Asks affected us. Because there were so many people, it did eat up a lot of time. This was one of the Lynn’s supposed concerns; too many people on the team would create an atmosphere where not everyone could speak.  

I acknowledge this was a larger group. And by Lynn pushing my teammate and myself to attend the Nebraska-only meetings, it cut the girth down by two people. I’m not sure what I was expecting when I joined the late-day Florida meeting, but it most definitely didn’t have a cohesive feel for a group of people that have been working together all day. There wasn’t a “teamwork” vibe happening. 

I patiently waited for Lynn to pitch for her self-named law. When she concluded, I remembered something that hadn’t been brought up during the pitches and asked the Aide if we could circle back. She obliged.

I treated the meeting like a boardroom conference and took notes about things that were missed or should be addressed further. I took a quick glance at my notes and spoke to correlate the Asks missed back into the narrative. I also hit upon a piece not covered by this group that my Teammate from 14B and I had made a point to speak about. It’s something I’m passionate about — having Medicare and private insurance companies alike providing full coverage for tube formula nutrition. I dove in discussing ports and PICC lines and the infection risk from the high-sugar content of TPN. 

I also spoke about the heightened risk of blood clots, sepsis, and how long-term TPN use can cause irreversible liver damage. And held it together when I mentioned how I lost one of my best friends to a pulmonary embolism after years of port issues and recurring sepsis. I wrapped up and thanked the Aide for allotting the additional time. 

Everyone started to exchange pleasantries with the Aide and thanking her for her time when suddenly a hand grabbed my arm. I froze. Then that distinct, loud, nasal, New York accent, projects loudly at my right ear, “You speak very well.”

Again, how I wished to say the thoughts in my head. Instead, I gritted my teeth while gathering my belongings up and dryly said, “Thank you.” Without missing a beat, I stood, turned and left the room. 

Here’s What Should Have Happened

In a perfect world, if Lynn was so concerned about everyone having a voice and time constraints because they are valid concerns — Lynn should have asked if anyone had a Rep or Senator that they really wanted to speak to over others, and then let the team decide who would go where.

There was plenty of ways to divide the group evenly and split Nebraska and Florida meetings amongst them. I realize it sounds weird that the one-half of the team would have only Florida members attending Nebraska meetings, but helllllllurrrr, that happened anyway when my teammate and I were sent into exile on Team 14B.

One of my IBD advocacy co-workers later pointed out the following: There is aggressiveness and there is leadership. She did not show leadership. She bullied you into getting her way. Leadership is inclusive. :::mic drop:::

It’s Not What You Think!

My Mother-in-Law is kind of a badass. The woman can tell you some stories from her time in the Navy, working for the government, and life in general. So, when she tells me, “You don’t suffer fools gladly,” I take it as a high compliment.

Earlier this week, I attended a lobbying forum representing patients with Digestive Diseases. There were quite a number of teams with more than one state represented per team. I was on Team 14 – Florida and Nebraska. Each team housed between eight-to-ten people. Ironically, I visit family in Nebraska quite often since falling into this Crohn’s disease flare and was pretty jazzed when I read both states were teamed up.

A problem emerged early on, since there was only one advocate in the group from Nebraska; the rest were representing Florida. This shouldn’t have been viewed or treated as an obstacle, but it was by one person on the team. Team 14B was created unbeknownst to the rest of us, leaving our Nebraska teammate more or less booted from Florida meetings. And then, so was I.

You may be thinking, wait a second, “Aren’t you from the Sunshine State?” Why yes, yes I am.

A funny thing happened on the way to the Capitol. It goes a little like this.

Once upon a time… just kidding.

But in all seriousness, I was involuntarily volunteered out of taking Florida meetings by a woman from my former hometown (also ironic?). Her name is Lynn Wolfson. I’ve never met this person before and cannot really say that her name sounds all that familiar. From the little I got to know of her, is that she’s pushing for sponsorship for a law that she’s created and named after herself. I learned quickly about what kind of person Lynn was, when she put someone on the spot to discuss her law to the forum. What was he going to say no in front of all these people? That occurred during toward the end of our briefings on Day 1. And one day later, she pushed me out of Florida meetings. 

I will say this, Lynn’s Law, has some great points. Are they financially realistic for most businesses to implement these changes in already established bathrooms? I’m not sure. But it’s a worthy Ask to get even one third of the items she’s listed to be passed into law. If you’re on Facebook, you can view a visual of a handicap bathroom stall with Lynn’s additions that would help ostomates, diabetics, and those with portable feed devices, here.

I may not care for how she handled things, but some of these asks will benefit millions of people and should be easy implements like a Sharps container, and shelf and hook near the toilet.

I Fundraised My A$$ Off!

Another thing I’m unsure of is how the other attendees of the forum financed their travel. My travel was partly helped through a stipend awarded by the lobbying event and personal fundraising. 

I fundraised my ass off to ensure that enough funds were secured, for myself and IBD advocacy colleagues who were attending, in the event the stipend didn’t come through. The goal was to help pay for this event, and if funds were left over they would go toward the next lobbying event in May. 

To say that I was stoked that I met the fundraising goal in order to lobby Florida’s House and Senate members during such a critical time in Healthcare legislation... that would be an understatement.

Bitter party of 1? You betcha!

In the end, I had the extreme privilege to speak with Aides who work for Nebraska’s Senators and Representatives and work side-by-side with an awesome advocate and her service dog.

What Happened Was...

After the morning’s briefing was over, we dispersed to find our teammates to get acquainted and head for the Capitol. After locating a Florida teammate I was excited to meet the rest. My IBD co-advocates are from other states and were with their respective teams.

As I was facing one of the teammates and getting to know her, a very loud voice with a New York affect was in my left ear, “Someone needs to go to Nebraska!”

It is as unexpected and surprising to read as it is to hear. My inner monologue responds, “Nebraska is a great place!” Then, the loud voice started to shout-speak again. This time she was in my face with saliva spraying at me and repeated, “Someone needs to go to Nebraska.”

We Have Now Arrived at the Fun Game Called: She said, She said.

Me: Are you telling or asking?

Lynn: [Crickets]

Me: I don’t understand what is going on.

Lynn: [She leans into my face and further invades my personal space] Someone needs to go to Nebraska.

Me: [I lean into her space this time and say through gritted teeth] I do not feel comfortable leaving the group. I am not familiar with the Capitol and got lost last time. The map didn’t help me much. Is this your first time?

Lynn: [Does not respond to my question] She’s a vet[rinarian], she’s very smart. 

Me: [Indignant at this point] I happen to be pretty smart, too. It doesn’t mean I can read the map they gave us. 

Lynn: [Still invading my personal space] There are too many people in Florida anyway, we all won’t get a chance to speak.

Me: [Catching on to her game plan, I say through gritted teeth] You mean for you to speak? Cool. You know my District Rep is on the list not yours. I fundraised to get here. I’ll do it, but I don’t agree with this. Where’s the Nebraska teammate?

Lynn: [Crickets, then mumbles loudly] She’s over there with the other service dog. [Looks down at my badge] Oh, you’re Jaime Weinstein.

Me: Correct

If I could print out an inner monologue of my brain telling my tongue not to say the profanities I was thinking, it would make for an amazing clip like something straight out of The Awkward Yeti. The reason she made the comment was that my name was called out by the lead lobbyist during Day 1′s Civics lesson in reference to my speaking at a Congressional Briefing about how the ACA saved my life. It was at that briefing that I was invited to attend this patient lobbying forum. Only to be booted out of said forum by a woman with what appeared to be a self-serving agenda. 

The GOP has threatened to repeal the Affordable Care Act (ACA) since it became official. They dubbed it Obamacare. Many Americans believe that Obamacare is different than the ACA, and the GOP has seized upon that. Our current president wants to repeal it. On Monday, February 27, 2017, President Trump made a comment that “Nobody knew healthcare could be so complicated.”

I beg to differ. I seriously, beg to differ. 

For the past decade, every single professional move that I’ve made has had a health insurance component attached. The day I was formally diagnosed with Crohn’s disease was the worst and best thing to happen to me. It validated I was truly ill after all the years of being ignored by doctors, but it also tagged me with a pre-existing condition for the rest of my life. The diagnosis while a blessing, also cursed me with the necessity of never being able to have a lapse in health insurance coverage. 

I assure you Mr President, even back then at 25-years-of age, I knew healthcare was very complicated.

Fact: About 52 million Americans (or 1-in-4 people) have a pre-existing condition.

The fear I lived with for over a decade now, was that if I went without coverage for too long my pre-existing condition won’t be covered. In order to take on a new plan, one must provide a certificate of coverage from your former insurer proving one did not go more than 90 days without coverage. Without this certificate one may get health insurance, but a pre-existing condition won’t receive coverage. It eventually may get covered, but a certain amount of years would need to pass. It’s a truly daunting and exhausting process.

Around the time the economy began to tank and ACA provisions came to life, I picked up a private policy. This plan was imperfect just like the ACA, but it was all I qualified for since I had Crohn’s disease. It was a high-deductible- and high-premium plan. I didn’t have much choice in taking this plan. I was just grateful that I had something instead of nothing and worked myself into the ground to afford it. It was exhausting. I was exhausted. And exhaustion is a dangerous cocktail when you have a chronic condition.

Proof of continuous coverage was the name of the game. I was hoping to keep the plan long enough until I would go full-time with my job that had strung me along as a contractor. Sadly as my health began to deteriorate they rescinded the offer to go full-time and left me as a contracted employee. At least I had the high-premium high-deductible plan to keep coverage intact and was able to afford it.

As we all know, life can happen at the drop of a hat. 

When my former boss deemed my health a “liability for the team” and shifted my pay to per diem, I was left with little-to-no income and a $400 monthly bill for insurance coverage, mortgage, car payment, utilities, etc... This list does not include the additional cost of doctor appointment co-pays, medications, or procedures. Nor did it include cost for eventually needed infusions or the cost associated with the infusion center where the infusions were administered. 

In less than six weeks time the cost of the infusion treatment’s loading doses (three doses total) came to over $1,000. If I had to pay for the medication, it would have been upward of $45,000. Luckily the medication cost was sponsored by the manufacturer’s program for people whose insurance wouldn’t cover the med. By the third month, I was encroaching on $2,000 in infusion center co-pays alone. This doesn’t count the $1,200 worth of monthly premiums I paid into over that time span. I was bleeding money out the wazoo, and actual blood. For those unaware, internal bleeding is a thing that happens with certain digestive diseases like Crohn’s. 

Below is a picture of me trying to make a bad situation seem normal and okay for other patients in the same boat.

I would like to point out the ACA is imperfect. The original iteration of the ACA had a lot more benefits than detriments, but as always ends up happening bureaucratic bloat occurred. 

Since 2011, better plans became available in many states, but not all. This disparity is part of the reason why the ACA isn’t popular amongst the people who are paying the same premiums I used to pay, although they may be receiving a far better plan. 

The ACA was designed to help spread out cost affordably, but inevitably some people, in certain states like Florida (where I live), got the shaft. They were not getting fair premiums and were having trouble finding practitioners who would accept the coverage they’re paying so much money for, and I urge them to look to news archives about how their Governor affected these premiums. And how insurance company CEOs are driving up cost in the name of their shareholders and higher revenue, as well as multi-million-dollar end-of-year bonuses to line their personal pockets. But I digress. 

At the age of 30, I received a lesson in healthcare economics that I never asked for. Since then, I have fought for others to not have to have the same experiences I was forced to: lose job, forced to sell a house I built from the ground up (see image below) along with all worldly possessions. 

The ACA, as I mentioned before is imperfect, but two of its provisions saved my life. When I was officially declared disabled, the ACA had a provision that allowed me to go under my mother’s employer’s health insurance plan. She could have retired by now, but remains working to help keep me insured until I’m well enough to return to work. Another provision that the ACA provided was extinguishing lifetime expenditure caps. Aside from those two provisions, there is also the pre-existing condition provision that would allow me to apply for affordable coverage and not get denied due to my various conditions if / when I am able to work and can afford to buy my own policy once again.

On Sunday, during CNN’s State of the Union broadcast, Rick Santorum sat on a panel and opened his mouth and said the following words, “... that thousands maybe approaching millions of Americans are paying 9 months for insurance...” Wow thousands morphing into millions is impressive in and of itself. Next, he continued the character assassination of the chronically ill and insinuated those with pre-existing conditions are scammers stealing health care. He implicated all Americans with chronic illnesses are only paying their monthly insurance premiums up until September, and went on to explain how they don’t lose their coverage for those three months of non-payment and due to provisions in the ACA are allowed to go and buy a new plan come January without consequence. [You can watch the clip here: https://youtu.be/aQO-xOntmEo.]

Confused? Irate?

Yeah, me too.

Let’s burn down an entire program based on an unfounded hypothesis, rather than fixing the alleged loophole he’s speaking of. Makes a lot of sense.

Editor’s note: Mr. Santorum if you ever see this, contact me and let’s have a chat. 

[Screen shot below taken from appearance on CNN’s SOTU appearance, link above.]

I’d like to point out that Santorum has a young child with Trisomy 18, which if a child survives past birth requires costly medical care for the rest of their life. You would think Santorum would be more empathetic to the plight of those who need pre-existing condition protections in order to survive. However, it appears Rick Santorum sees the chronically ill as scam artists. 

For the record, I’ve never met someone with a chronic illness willing to risk loss of coverage or future ability to retain coverage. Nor have I met a patient willing to be sent to collections. But this is what Rick Santorum thinks of us. 

This makes me wonder if many of his GOP peers also think of us as such? Some of these GOP peers who according to the odds, more than likely, have pre-existing conditions themselves, no less.

This Saturday, I leave for Washington D.C., to attend the Digestive Disease National Coalition (DDNC) forum. We will advocate for agenda items such as funding for disease and treatment research, along with asking for provisions to keep patients with pre-existing conditions safe.

I’m not against changing the ACA from the iteration it’s taken on, but I do want to save the provisions that keep vulnerable people safe. I do want to help make it better. However, I’m not seeing replacement plan proposals that will benefit anyone who isn’t of decent financial means, and I have not seen a single thing that will benefit the estimated 52 million Americans (one-in-four people) with pre-existing conditions. All the while GOP members cry “Repeal!” and “It’s a disaster!” 

I’m only seeing disasters being presented. I’ve never so much wanted to be proven wrong before in my life and still hold some hope that some kind of middle ground can be reached, but my hope is fading quickly.  

President Trump has met with politicians (majority of which belong to his party), and industry leaders in the tech and business sectors, as well as the health insurance industry. The people he’s refused to meet with or acknowledge since becoming president are the patients worried about the next steps to his Repeal and Replace ideology. His comments on Monday about not realizing healthcare was so complicated, is worrisome, to put it lightly. 

It’s very complicated. Lives hang in the balance based upon whatever form of “Repeal” this administration takes on. 

I don’t want to point fingers (but I am, on here) my specialty pharmacy insurer (which I’m grateful to have) has once again mucked up a new prescription. This is not the first time, and I’m sure it won’t be the last. (I can almost guarantee this.) 

A couple of weeks ago, the FDA approved an existing biologic medication for the Crohn’s disease indication. It’s been on the market for some time now treating Psoriasis (another condition I live with). My IBD specialist and I both knew the medication was coming to market, but we didn’t know when and my health has been declining over the past few months. We figured starting the paperwork back in September would get me approval sometime in October if not November due to the inevitable denial and appeal process. 

For those who don’t know what that process entails, it often includes questions like, “Did the patient try medications x, y, and z first before applying for this medication?” 

I’ve been with this insurer for years, and they have the answers in their database but nevertheless the questions will always get asked. After at least one denial, I received an acceptance letter for the Psoriasis dosing that many specialists were using for Crohn’s patients with Psoriasis. One week later, my phone blew up with texts about the good news -- the med was approved by the FDA for the Crohn’s disease indication! 

Since the FDA approval announcement, I knew we would re-write the prescription for Crohn’s disease specifically. I asked my IBD specialist and her clinic’s Pharmacist if we would run into an issue with having the other prescription written for Psoriasis attached to my account. They didn’t think it would. I decided to let go and let the clinic pharmacist work his magic. 

Realistically not too much time has passed since we started this process. But we all felt this would be a fairly swift task to complete as the prior authorization exists with all the questions answered. We were just changing a couple of items. When I received my financial assistance information for the medication, everything began to feel real. The only thing missing was the formal appointment setting for the infusion center. A few emails later, I found out from the IBD clinic’s pharmacist that the infusion center was waiting on my insurance company. Something felt off with this and my Type-A personality took over, and I found myself going on autopilot calling the specialty pharmacy.

While going through the prompts to get to the proper agent, I kept thinking to myself had the specialty pharmacy or even the infusion center physically reached out to me (hah!) at some point in the last week or two, I probably would have an answer as to when I get to start the treatment on November 7 or not (I’m almost positive).

It’s things like this that fills my being with worry in regard to how less-experienced patients are affected in these types of situations. Do they know what questions to ask? Do they know who to ask to speak to? Do they know when they are being placated and need to push for more answers? Do they know when to back off and call back later to speak to a new customer service rep?

Two specialty pharmacy customer service agents and a legit pharmacist later (shout out to Pharmacist Gloria!), we were able to upload the new information for the medication’s patient assistance program into the system. We were also able to nail down answers the specialty pharmacy’s pharmacist needed answered. From there she placed a few phone calls to my specialist and the clinic’s pharmacist, as well as the infusion center. 

Progress! So much progress! I was beginning to lose hope for November 7, but for now I am holding onto hope.

When you fill out the paperwork for Disability, you have to describe your physical limitations that are preventing you from doing the job that was once your career. The forms ask you how long you can sit for, stand for, walk for, and how much weight you are allowed to lift on the job according to your doctor. After you respond for the length of time in minutes or none at all, you usually have to give a short explanation of why you can’t do it. 

I’ve been down that road and it’s mortifying.

Being on steroids the past two months has given me amazing bursts of energy and has allowed me to do more in a short span of time than I have really been able to do in close to a year. That being said, for every action there is a reaction looming ahead. In my case, one of my treatments is failing and things will need to change in the next two months depending on insurance. Because of course your insurance company should have the ultimate say in your treatment plan above your own disease specialists, right? But I digress... I’ve been trying to take advantage of these bursts as much as possible, but also am reading the warning signs of when to wave the white flag to ask for help or to just slow down and take a breather. However, I’m just coming off one patient advocacy summit, and have another 4 more planned in as many weeks.

When people ask me, "If you're so sick, how do you do everything you are doing right now? Shouldn't you stay home?" 

The truth is -- Yes, I probably should be home doing nothing but resting. But the minute I'm no longer in motion, and left alone with my own thoughts, that leaves too much time to feel. I call this Shark Mode, and have referred to it in the past. Sharks have to be in motion or they die. A friend and I just had this conversation a little while ago today. 

To paraphrase what she said, “A body in motion stays in motion. But a body at rest has the time to fall apart.” I’m petrified of falling apart at this point. 

Perhaps Advocacy is a form of escape? I will definitely agree with that. 

But for the next four weeks, I’ll be swimming and advocating my booty off for IBD patients. Stay tuned, lots of new content and IBD news is on the horizon. 

The bigger, the better -- an easy adage acceptable by the male population. But when it comes to women, we’re supposed to follow a completely different set of rules -- sit down and shut up. These are examples of stereotypes very present in today’s society. 

Last week, I stopped myself from apologizing for something absolutely unnecessary -- discussing my health with my doctor. Granted, the apology was being tapped out in that very small email window you have to deal with when it belongs to a website’s portal, and you cannot really tell if you’ve typed a lot in general or a lot for a tiny window. 

In case you were wondering what I was apologizing for, I was giving my PCP information she has always requested I give the minute I get it. But that window was so small, and there were “SO. MANY. WORDS.” 

There’s truly only one thing we can have too much of and that’s coffee. Maybe.

Okay, probably not, because I LOVE COFFEE and if you ever hear me say otherwise I’m being held hostage and you need to contact the authorities immediately. Also, I liked the above GIF. But I digress... 

The reason behind questioning if my email was worthy of “SO. MANY. WORDS.” was courtesy of having my first colonoscopy, in close to 3 three years, last week. [As an IBD Advocate, I do not recommend nor condone my behavior. It was due to extenuating circumstances. Now back to your regular programming.]  

It was while reviewing the message beaming from my iPhone’s screen that I started second guessing each detail laid out in the email window. “Is this too much information for one email? Should I tell her I was told I went tachy under sedation with no known cause, before having a physical report to hand over? Is it too much to ask for a medication refill and if she needs to see me earlier than our scheduled March appointment in this same long email?” There’s that word again, long.

Each hesitation was followed by the urge to apologize for the message’s length. A vicious cycle was born: Review the email, alter wording, then fight the urge to apologize for its length. Rinse. Lather. Wash. Repeat. 

And then it hit me, “WTF?! are you apologizing for?” 

Over the past three years since my PCP has taken over my case, she’s become for all intents and purposes my body’s project manager. It’s my patient responsibility to keep her apprised of issues in general. It’s my job to let her know what went on at each specialist appointment, and upload labs to the portal or bring them in if they haven’t been sent over by the specialists. Now that there is an email portal, less mix up between voice mail to MA to MD occurs, because all the information is there for her to review. This particular message pertained to finally getting the colonoscopy everyone, including her, has been waiting for me to undergo. I had preliminary details to share. I also am scheduled to travel toward the end of the month and knew my window to schedule an appointment with her would be limited once I went to the GI follow up; seven days to be exact. 

Even though pathology wasn’t available yet, there were details I knew she would want to know while they were fresh in my head. 

I also knew she would have had her own set of questions if I simply sent a message worded like, “By the way, had a scope on Wednesday. Some weird stuff happened. No big deal. P.S., traveling for three weeks and need a refill for my anti-anxiety-don’t-care-if-my-plane-falls-out-of-the-sky-again med.” 

A message worded like that would probably earn me a “WEINSTEIN!” response in email, in person, or (even worse) both. *Double Face Palm*

After all, she has invested a lot of time and effort into Project Me.

None of this, however, mitigates my incessant urge to apologize for taking up her time. Even though my health is her job, and I was following her directive to share all important information, I literally had to slap my own hand. 

Perhaps it’s ingrained in us as little girls to be seen not heard. You know, not to be bother...

Ask most advocates and they will tell you, it’s always easier to be assertive on someone else’s behalf and advocate for them, than it is for yourself. 

The Super Bowl isn't the greatest night of football each year in this house. Sorry Mr. Manning! To us, it's the greatest night of the year for some expertly crafted commercials along with a few spectacular bombs that I will bitterly complain about in real-time on Facebook.  

Amazingness and awfulness aside, there was a segment of commercials that stood out to me and also stood out to a few others in my Facebook newsfeed -- digestive disorder related medications. I would also like to add that this was brought up in a non-IBD, non-Crohn's disease, non-ulcerative colitis portion of my newsfeed. In other words, “normals” were discussing these new-to-market bowel meds.

Could it be the bowels have taken over the Super Bowl commercial elite? What?! 

Sure, there were plenty of non-digestive related commercials, but the ones that were bowel related sparked quite a few conversations on Facebook that piqued my interest. In one conversation, I hopped in to explain to someone why opioid-induced constipation should be taken seriously. 

In all my years of digital marketing and patienthood (if this is not a word, I'm dubbing it so, here) have I ever seen so many bowel-related commercials in one night let alone airing during an event like the Super Bowl. Might I add, tonight’s game was it’s 50th anniversary; a big deal in and of itself. I would also like to note that I had CBS airing all-things Super Bowl since about 3 p.m., and I believe the dedicated commercials started around noon. 

Commercials for IBS-D med Xifaxan (rifaximin) with its quirky talking intestine, to Movantik (naloxegol) with its crawling at a snail pace imagery for battling opioid-induced constipation in non-cancer related chronic pain patients were streamed to viewers receiving the North American feed of last night’s big game. Viewers who haven’t been exposed to commercials over the past few months in effect learned a lot about two extremely different digestive disorders in a very short span of time... 

[If you would like to learn more about the difference between traditional constipation and opioid-induced constipation, visit https://www.oicisdifferent.com/.]

Yet, something was missing from the line up... Humira! 

Yep. Humira (adalimumab), referred to by the Chicago Tribune as the “Swiss army knife of pharmaceuticals” due to the drug having 9 on-label uses, as of September 2015, with more possible uses around the corner. It also has a couple of off-label uses currently in practice. If you look over the financial reports for Humira, it’s obvious they didn’t need to blow the advertising budget on a Super Bowl ad placement.

HOWEVER, as Humira’s branding has improved, so has its commercial storylines and I’ve found them extremely helpful in creating a dialogue with a layperson who was previously unaware of autoimmune inflammatory diseases like Crohn’s disease and ulcerative colitis (two forms of Inflammatory Bowel Disease), Psoriasis, Psoriatic Arthritis, or Rheumatoid Arthritis.* And I’ve also found these commercials useful to open a dialogue with patients who were at the time opposed to using biologic medications to treat their condition. Patients whose quality of life sucked; no simpler way to put it.

*Those are but a few diseases it can treat, as mentioned above there are a total of 9 with more possibly to come.

On average, I see about two to three Humira commercials during any given prime-viewing hour. I am curious to know if Humira was even considered to go up as a Super Bowl commercial contender, since the other two bowel meds made it to the big leagues?

[Editor’s Note: Baseball analogies work during football discussions too, right?]

The Humira commercials have come a long way from spokespeople spinning in circles asking, “What If?” during the IBD branding spots. And yes, while their messaging for the IBD niche has definite room for improvement -- could having a 10-, 15- or 30-second spot during the Super Bowl generalizing Humira’s uses make a more profound impact than AbbVie may have ever considered? Just throwing that out there.

[If you’d like to see Sara’s Inflamed & Untamed “What If” video, with myself kind of there, go to her YouTubes.] 

I doubt I will get the answer to this burning question, even though not only am I a Humira-using patient, but I am also a patient education speaker in their network. *Le sigh* 

I cannot help but think that AbbVie might have missed out on opening up a greater dialogue between autoimmune inflammatory disease patients and their doctors, as well as these patients having their eyes opened that biologic therapies exist and they work. 

One crazy takeaway that I got during my last speaking engagement was how timid some GI specialists are with their patients’ treatment, and they are candid about it with their reps. This information has helped reinforce for me as a patient that just because a physician is a “specialist” of certain disorders and disease types, they may not know everything. This means: 

YOU MUST DO YOUR RESEARCH. 

EDUCATING YOURSELF IS CRITICAL. 

YOU HAVE TO BE YOUR OWN ADVOCATE.

Forgive me if I sound like a broken record right now... I have found the Humira commercials helpful in getting patients to think that medication is a viable option for them. Sure, there are whackadoodles who are anti “Big Pharma”, they have been around in various forms throughout time (*cough Snake Oil Salesman cough*). Like I said earlier, these commercials are great conversation starters and ways to open a greater dialogue. 

As always, there are risks with any kind of medication, even Tylenol. Although biologic meds are referred to as chemotherapy, the risk is far outweighed by the benefit that the medications provide. Do I know people who had awful adverse reactions to some of these biologic meds used to treat the conditions I mentioned above? Yes. Am I one of them? Why yes, yes I am. But I found one that fits for right now and that has improved my quality of life tenfold, and that is one of the key points I get to make when having a discussion with someone that starts thanks to a silly commercial. Even one with someone spinning around asking to no one in particular, “What if?”