Hope Warrior- Amber Tresca

Today I bring you, in my humble opinion, the guru of IBD (inflammatory bowel disease): Amber Tresca. Amber is an IBD advocate. She works hard to bring forth the facts about IBD, answer questions and support patients as the navigate the confusing paths that these diseases take us down. She does amazing work on her blog, podcast, twitter chats and all of the articles she writes. Amber is the real deal when it comes to advocacy, and I’m so honored to share a bit about her here. Thanks for participating and all that you do, Amber!

 When were you diagnosed with Ulcerative Colitis?

I was diagnosed with ulcerative colitis in the fall of 1989; I was 16 years old.

What do you remember most about that day? Looking back, if you could tell yourself one thing about the diagnosis you were about to receive, what would it be?

What I remember most about the day I was diagnosed was that everyone seemed to know the language of healthcare but me–the many questions from physicians and nurses when I was admitted to the hospital were completely foreign. If it were possible to tell my 16-year-old self one thing, it would be that the way things are today is not how they will stay.

 

In my opinion, you are the information guru for IBD. If you don’t have the answer, you usually can find a trustworthy resource! That’s pretty awesome. What is your favorite part about being an IBD expert?

My favorite part from being an IBD expert is being able to make a difference in people’s lives. There have been many instances over the years where I’ve been able to provide a key piece of information that helped someone with IBD alter their path in a positive direction.

What are some of your other favorite things to do outside of IBD awareness and education?

Outside of my IBD life, I enjoy movies, crafting, playing with my kids, and am an avid reader.

What is something you have accomplished that you are most proud of?

I’m proud of my most recent venture, with is the About IBD Podcast. Podcasting is not something that I had any experience with, yet I leaped in with both feet and my work has been well received.

 

Who inspires you?

I’m inspired by my children as well as the many IBD advocates and industry professionals that I work with in the IBD Social Circle.

What are some of your coping mechanisms for dealing with stress?

Stress is always a huge issue for anyone with a health condition and my stress relief usually involves spending a day away from work and in the kitchen cooking and baking, preferably for dinner guests.

 

What keeps you hopeful?

What keeps me hopeful is learning from the many researchers and practitioners whose daily work seeks to better the lives of people with IBD through research and the improvement of patient care.

Do you have a favorite saying, quote, mantra or song that you turn to when you need to flip your mood around?

A mantra that I’ve taken from one of my favorite books, Dune, by Frank Herbert, is called the Litany Against Fear. It’s quite specific to the book but it reminds me to have courage in the face of fear, because fear is transitory.

“I must not fear.

Fear is the mind-killer.

Fear is the little-death that brings total obliteration.

I will face my fear.

I will permit it to pass over me and through me.

And when it has gone past I will turn the inner eye to see its path.

Where the fear has gone there will be nothing. Only I will remain.”

Time for rapid fire this or that:

Chocolate or Vanilla?

Chocolate

Coffee or tea?

Coffee

Hot or cold?

Hot

Sweet or sour?

Sweet

Charmin or Cottonelle?

Neither! Seventh Generation

Dog or Cat?

Cat

Running or walking?

Running

Road trip vacation or resort vacation?

Road trip

Android or iPhone?

iPhone

Sunshine or rainy day?

Sunshine

Dinner our at a restaurant or a nice home cooked meal?

Dinner out

Doing the dishes or laundry?

Doing the dishes

Comedy or Horror?

Horror

Fiction or nonfiction?

Fiction

Cake or pie?

Cake

 

Final Question:

You’re in the waiting room about to leave after a follow up visit with your GI. Someone else is in the waiting room and they were just diagnosed with a chronic disease. They catch your eye and then ask you “How do I get through this?” 

What do you say?

What I would say is that you will get through this because you will not allow it to defeat you. How you feel today won’t be how you feel tomorrow or the next day because you’ll get your spark back, and you’ll find that it shines brighter than it ever did before.

 

You can find Amber at the links below! 

Facebook: https://www.facebook.com/ibdcrohns/

Twitter: https://twitter.com/aboutIBD

Instagram: https://www.instagram.com/about_IBD/

Pinterest: https://www.pinterest.com/aboutibd/

Google+: https://plus.google.com/+AmberTresca

About IBD Podcast: https://itunes.apple.com/us/podcast/about-ibd/id1228402052

Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703

Blog: http://aboutibd.com/ 

Hope in a New Infusion Center

Good morning!

I’m writing to you from my Lazy Boy chair. My dog is under my feet and the cat is to my left contemplating walking over my keyboard. I have a cup of yogi tea this morning, Blueberry Slim Bliss Green Tea to be exact. So yummy. I just finished a delicious breakfast of leftover gluten free pancakes topped with a ton of strawberries and maple syrup. My husband made a huge batch of the GF pancakes yesterday, and we finally got the recipe right where they taste like real pancakes, not biscuits. Today mostly though, I feel relief. This last week was a struggle, and I’m ready for a new week with a fresh start. I love Sundays.

I had my remicade infusion on Friday, finally, so I slept about 11 hours on Saturday night. I woke up yesterday morning ate breakfast and then went back to bed for another 3 or 4 hours. It was a slow day, and I didn’t do anything productive but rest and allow the medication to do what it is supposed to do. I’m feeling better today. Not a ton of energy, but I don’t feel like I need to take a nap right now.

If you don’t follow me on Instagram (@flareuphope) or Twitter (@flareuphope), you probably don’t know the trouble that I went through over the past week to get this remicade infusion. I post in Instagram the most often out of all of these outlets. Anyway, I’m sharing this because it’s not an example of patient care, and it really taught me the need for patients to advocate for themselves, and to find new ways when you can’t break through the bureaucratic tape. Also, make sure to call a week before your infusion if they don’t check your order until you arrive. If there is a mistake or something is missing, they might not catch it until you arrive for your appointment, and at that time there is likely not  much you can do to get it resolved. Even if it is a standing order that has been used previously, that doesn’t mean it will be okay the next time. If you are concerned at all or don’t feel confident with the center, call ahead, double check the order and make sure it is good to go before you get there. I don’t think this is something a patient should have to do, it is something that should be reviewed ahead of time and it is not the responsibility of the patient to read an order that they have no training in reading. However, if they do find an error, they cannot “unsee” it and it is your care that gets put on hold. You have to advocate for yourself because no one is going to do it for you.

As much as I can avoid it, I will no longer do business with the hospital due to the lack of care I have received. It is a huge hospital in this area, and my PCP is affiliated with them. I will continue to see her because she’s my biggest supporter of my care, but I will not see this hospital for any other care beyond that. There was nothing she could do in this situation aside from make sure my complaint got to the right department and hope that change is made so other patients don’t go through this.

We are now driving over an hour away for these infusions. It’s not convenient, but at this point the level of care outweighs the distance. My new infusion center is at U of M, and my GI is there as well so if there are any issues ever, they can page her or the on call doctor and get an answer right away. They also read the orders before you arrive so it is ready when you get there and any questions are in the process of being answered. It is professional and patient centered. They way it should be.

Here’s the letter that I wrote to my primary care doctor about the situation that had occurred.

Hi Dr. *****,
I’m sorry to have alarmed you with the panicky message. I was having an anxiety attack and you were the only person I could think of who might have some pull to fix it at the time. I know now that there is not anything you can do but perhaps you can report this situation to the right people to make sure it doesn’t happen to someone else. This was not patient care and puts me at risk for a flare.
On March 17th, 2017 I called and scheduled my regular Remicade Infusion for 5pm on March 31st. I have been getting these infusions exactly every 8 weeks for almost 3 years. I have never missed one, I make sure to schedule the appointments with enough advance time and I arrive to my appointments early with all orders on file and labs completed as requested.
On March 31st I arrived at Sparrow Infusion Center at 4:50 for my appointment. I was given an ID bracelet, lead to my room and my vitals were taken. I settled into the chair with a cup of hot tea and waited for the nurse. At 5:20, I was told that my standing order, the one that has been on file for the last 6 months and that I have received 3 infusions with prior, had a problem. The problem was on the very last line, where it stated “IV filter every 8 weeks X 1 (term).” It was missing the word year in place of term.
The nurse explained to me that they were being audited at the infusion center and could not use this order as it stands, even though it had been used in the past 3 infusions exactly as it was with no issues or questions. I did have my new order, the only difference being the amount of fluids I received afterwards.  My new order was supposed to be used for the next infusion, but was dated in time for this one so could still be used.
The director, Dr. XXXX who must approve the new order had not been reachable since 1pm, and as it was now 6 pm on Friday, I was told there was nothing I or they could do to resolve this situation, there is absolutely no one else who can approve the order but Dr. XXXXX. I asked Nurse XXXXX to check with her manager and explained the building of antibodies, and she did, but they said the manager couldn’t even approve it, approval had to come from the director. I asked if I could come in tomorrow, she said no. At the very earliest it would be Monday but that was not likely, as it took 72 hours to get new orders approved, even with these circumstances where I was not at fault.
When I asked why this had not been caught earlier so that this situation would not have occurred and it could have been resolved, XXXXX stated she did not know but I could let Patient Services know my experience. I asked why this was caught at 5:20 instead of prior to my infusion and she said there hadn’t been time to review my order before I arrived.
I left 2 messages with the manager of the infusion center hoping that I can get in on this Friday as I cannot afford to miss three days of work this week to get this infusion, I get them on Fridays because I need 2 days to recover. I called the infusion center on Saturday and spoke with XXXX who confirmed there is nothing anyone can do, they DO NOT have a contingency plan in place for new orders and mistakes, and there is no back up person who can sign new orders, and only schedulers can set up new appointments and they are not in until Monday.

I called that infusion center twice last week and left more messages, and have yet to hear back from anyone. After the most recent phone call, I had enough and called U of M. I was able to get the first available appointment on Friday, and everything went smoothly aside from a blown vein, but that wasn’t their fault.

I’m hoping that the patient centered care will continue with this new spot and that the other infusion center will make some changes. I hate to think of anyone else going through this.

 

If you made it this far, thanks for reading!! I appreciate all of your support while I was going through this stressful and infuriating time fighting for my medication. How do you advocate for yourself in situations like this? Comment below or message me on Instagram or Twitter and let me know your tips. Have a great week!

 

Reflecting on 2016

What. A. Year. 

Globally and nationally the world has seen a lot of tragedies and set backs, and there are a lot of people who are ready to put this year behind them and move forward with hopes that 2017 has to be better. 

It feels almost awful to say this due to the sadness I’ve seen across the globe, and please don’t view me as someone who doesn’t see these things happen and who isn’t affected by them. My heart has been broken over and over again and I can’t count the amount of times I’ve said I’m losing faith in humanity, or even that I had lost faith. 

The 2016 year that I lived has been so full of love and joy it’s almost bursting at that have seams. 

In January 

We rang in that have helped new year as my last time under my maiden name surrounded by great friends. I had a remicade infusion. My fiance and I found an awesome new restaurant where I blessed out on eating potato nachos and a glass of wine. I didn’t worry about running to the bathroom or curl up in pain.  

In February 

There was lots of wedding planning, folding paper flowers, practicing yoga and waiting for spring.

In March 

An awful MRI experience but confirmation I was cancer free, more remicade and my first bridal shower.  Never have I felt so loved or grateful.

In April 

Another bridal shower where I was embraced and accepted into a new family, bouquet making with my tribe and another infusion. 
In May


I turned 28, celebrated our upcoming marriage with all of our couple friends and truly blessed out at the amazing bachelorette party my lovely friends threw for me. This month was full of all of my favorite things and favorite people. 

In June

I married my best friend and favorite person in the entire world standing in the rain and then danced the night away in a barn that was almost 200 years old. We adventured to California and explored the coast from San Francisco to Eureka. We saw a whale tale and beautiful scenery and got to just be together. It was absolutely perfect. June ended on a low note with some upsetting TB diagnosis but only made me stronger in the end, as hard as it was to accept. 

In July 
We had weekends full of friends and family watching fireworks, going to baseball games, dinners and festivals. 

In August 

We saw Paul McCartney in concert, had another remicade infusion and met a new doctor at an IBD center. So happy to have a good medical team on my side. We also celebrated the pregnancy of one of my oldest and dearest friends and threw her a baby shower. 

In September 

We went canoeing and had cookouts and a Baby Q, pool parties and we finished the TB treatment.  I travelled to my first IBD event as a consultant on a patient panel for Ulcerative Colitis. I got to fly to Miami and meet some of my IBD heroes in real life, and be a part of something bigger that could improve treatment and options available for those diagnosed with UC. 

In October 

We celebrated the marriage of one of my best friends to his perfect match, had another remicade infusion, introduced our dog to his brother and enjoyed some gorgeous fall weather.

In November

 I flew to Atlanta for another UC patient panel. We welcomed a baby boy, Bobby, to our tribe. We saw cranes migrating and adventured to the Upper Peninsula hunting down waterfalls for Thanksgiving weekends after 2 joyous Friends-givings.

In December 

My first IBD Twitter Chat, lots of IBD awareness, simple Christmases and a new feline addition to our household. 


I’m looking to 2017 with lots of self care, optimism and a sense of adventure. I broke my remission streak during my TB treatment but luckily was able to snap back into it quickly and have been feeling great. I will continue to do everything I can to stay here, but I know that often these things are out of my control and I can only do my best. Whatever happens.

I don’t make resolutions but I do make lists and letters of what I want to accomplish and the state of mind I want to obtain. I’m so excited for the plans I have for this year. 

What about you? How was your year? What are you most looking forward to?