When I woke up from the anesthesia after my colonoscopy in 2013, I was told that I had Ulcerative Colitis and that there was no cure. I was told there were treatment options available and we would discuss them next week.
And that was it.
I wish that there was not any more IBD diagnosis. Unfortunately, it is becoming more prevalent and pediatric cases are increasing as well. Every year 70,000 people are diagnosed with IBD. Let’s give these people some hope. I recently found out that the office I used to seek treatment for my Ulcerative Colitis will not hand out the new patient packets for their IBD patients. Free resources that they won’t utilize. This is unacceptable.
was left to my own devices to search the internet and social media trying to figure out what the hell was happening with my body. I was given very little hope and a whole lot of fear. At the time, there were less than 100 hashtagged #ulcerativecolitis posts on Instagram. Now there are over 127,000.
I don’t want anyone to ever wake up to those words again and be left to read the worst of the worst on chat forums on Google. There are so many resources available now, and so many treatment options that remission is possible if you have the right care team and find what works for you. This is why I walk for the Crohns and Colitis Foundation. Come join me on Sunday, October 1st at 1pm at Hawk Island (1601 E Cavanaugh Rd, Lansing, MI 48910) and take a walk with me.
Sign up here: http://online.ccfa.org/goto/hopesparkers
Or if you can’t make it, if you would consider donating I would greatly appreciate any contributions to my team fundraiser.
Thank you for supporting me. I hope to see you there!
Cheers to another Hope Warrior Wednesday! This week our featured warrior is Nicole. Nicole is a sweet mom, wife and fellow spoonie who shares her faith and hope on her blog and instagram posts. Make sure to stop by and tell her hello, and find some delicious recipes on her website! 🙂 Thank you, Nicole!
What chronic condition or illness are you currently battling?
When I was 24 I was diagnosed with endometriosis. However at the time my doc didn’t explain how it’s an autoimmune disease or how to help support my body. So life went on and I lived in blissful ignorance. At age 31 I started to feel my health crashing. I was drained in every aspect of the word, and had every single thyroid symptom in the book (at the time I didn’t realize they were thyroid symptoms). I would cry to my husband, desperate to get back to normal and be the mom and wife I wanted to be. Finally in my struggle to try to lose weight, I stumbled across Paleo. Through the reading of blogs and listening to podcasts for how to live the paleo lifestyle, I kept hearing about Hashimotos. I had every symptom! I went in for my routine annual and begged my doctor to test my thyroid. Initially she only tested my TSH. I persisted because it came back “normal”. So she tested my antibodies and they came back slightly above the (again) “normal” range. Thankfully this threw a red flag to her because she sent me in for a thyroid ultrasound. The results came back that I had multiple modules on my thyroid and it was enlarged. She referred me to an endocrinologist. This was truly the turning point in my health journey. He did a biopsy of the nodules to rule out cancer, which thankfully it was negative for, but I received the diagnosis of Hashimotos.
Just recently I’ve been working on getting my hormones healthier and through this research I’ve discovered that I more than likely also have PCOS (polycystic ovary syndrome). Though I can’t say for certain until I get the diagnosis from the doctor.
What do you remember most about the day you were diagnosed? Looking back, if you could tell yourself one thing about the diagnosis you were about to receive, what would it be?
I vividly remember the day I received the Hashimotos diagnosis. Since I’d been learning about this disease the last few months I knew the negative connection between gluten and the thyroid. I asked the doctor ways I could reverse Hashis and how to go about changing my diet for this. I will never forget what he said in reply as he laughed at me… “No. No. Food has no impact on health. The plan will be to let your thyroid die, then we put you on thyroid meds for the rest of your life.” I sat there stunned. I turned to my husband who seemed to have the same reaction as me. I shut down. It seemed to me like I was one of those people in a movie where others are talking to them but the voices are muffled and they aren’t listening. They zone out. That’s exactly how I felt. My husband and the doctor talked a bit more, though I have no clue what about. We left and I drove home following my husband since he’d come straight from work. I didn’t make it far before I had to pull over because I lost it. I cried so violently that I couldn’t see the road. I was so scared and had no idea what this meant for my future. I knew the stats. By Gods grace I regained my composure and drove the long drive home. That very night I gave up gluten for good and became my own warrior. Eased into Paleo and never looked back.
If I could go back and give myself some advice, I’d say “Trust your instincts! You know your body well, listen to it on this journey! Pray!! Taking care of yourself isn’t selfish, it’s necessary for your whole family, because THEY NEED YOU TOO!”
What medications/treatments/surgeries/lifestyle changes have you gone through to manage your disease symptoms?
Whew! lol Where do I start?! Since I fired my endocrinologist that day, I was going in blind and had to figure this out on my own. The one thing I can say is that I am forever grateful to those that came before me and shared their story because through them I was able to find quality research to guide me. There were a few supplements that it seems every hashis patient needs…selenium, zinc, a high quality multivitamin, vitamin D, and a B complex (especially because I have MTHFR). I’ve also added in and taken out countless others over the last three years. Currently I am taking naturethroid at a very low dose (subscribed by my PCP who practices a more functional med way). I also take vitamin C, magnesium, strong probiotics that I rotate every few months, glutathione, and vitex for hormones.
A few of the lifestyle things I practice and enjoy are epsom salt baths (magnesium), yoga, lifting weights, and dry skin brushing. I overhauled every body, makeup, and house cleaning product in our home as well since all of those can be massive endocrine disrupters.
The biggest proponent in changing my health has hands down been my diet though. Since switching to Paleo most of my thyroid symptoms dissipated in less than three months. I still get occasional flares from stress, accidental gluten exposure at restaurants and even traveling (but it brings me too much joy to stop traveling!).
You have some great creative recipes and food photos on your Instagram and blog. What inspired you to share what you have learned about food with others?
I initially learned about hashis through Instagram after finding Paleo bloggers who had it. So I was inspired to share my journey as well in the hopes of paying it forward and helping others the way I was helped. Eventually I started a blog which was more so about my emotions on what was going on than recipes. As I started to get my happy back, I began to feel inspired to share my recipes on their too. Instagram has been such a gift to me on this journey. I’ve made friendships with so many incredible warriors and learned so much about living a healthy lifestyle.
What are some of your other favorite things to do?
(favorite books, music, podcasts, hobbies, activities etc)
Oh goodness, there is so much! I think my husband is sick of hearing me say “I was listening to this podcast and learned…” I LOVE podcasts so much because I can work and learn at the same time. If I’m not listening to podcasts then I have music playing.
I live in Michigan so in the summer I love to stand up paddle board, jet ski and go for walks with my family. I have gained an intense love for gardening this year and am often seen chasing my 5 chickens away from my tomato plants.
I love to travel and have a mile long bucket list of places I want to see around the world.
I really enjoy lifting weights, doing yoga, and reading books of all kinds!
What is something you have accomplished that you are most proud of?
Being a mom is by far my proudest achievement. Nothing can compare to it. I have two daughters, ages 8 and 11, and would gladly welcome many more if God wills it.
Who inspires you?
So many people on Instagram I see doing such amazing things to help others and fight for their own health all at the same time. They inspire me beyond belief.
In life as a whole, I am immensely inspired by Saints and the lives they lived.
What are some of your coping mechanisms for dealing with stress?
Pray. Pray. Pray. It is my ultimate defense against stress. I can always tell when I haven’t spent enough time with God. My world seems darker and little things bother me that normally wouldn’t. Another thing I practice is deep breathing (inhale and the stomach fills like a balloon, exhale and bring the belly button in to the spine). Last but definitely not least is hugs from husband. Melts the blues away
What has been the best thing that has happened so far that would not have happened if you did not have your chronic illness?
My motto is “everything happens for a reason”. Even with as hard as living with an autoimmune disease can be, I truly believe it’s been a blessing in disguise. It’s made me overhaul my diet, my home and evaluate my priorities in life. It’s a gift I give to my family at every meal, every breath of clean air in our home, and sip of filtered water they take. More than anything I want to set them up for a lifetime of health. Children’s bodies are fragile and it saddens me to see the way parents feed their children in our generation. It will affect them for the rest of their life.
What keeps you hopeful?
Ultimately my faith in God is where I receive my hope for all things. It’s also found in the joy of little things. A gloriously colorful sunset, a butterfly that floats in out of nowhere, a vegetable that I grew and prepared for dinner, and cuddles with my family all bring glimpses of hope that this world is really a beautiful place and joy can be found anywhere despite any difficulty.
Do you have a favorite saying, quote, mantra or song that you turn to when you need to flip your mood around?
Besides the quote “Everything happens for a reason”, I cling to the Bible verse “For nothing will be impossible for God.” Luke 1:37
My song addiction lately is Lauren Daigle “O’Lord”
Okay, time for rapid fire this or that:
Chocolate or Vanilla? Can I say both? Lol! I looove good quality chocolate but also love vanilla in all things.
Coffee or tea? Hot coffee (black, decaf (Swiss water process, organic), with collagen peptides). Cold iced tea.
Hot or cold? I loathe being cold.
Sweet or sour? Sour
Dog or cat? I used to believe I was a cat person, and although I love our cat, my dog (golden retriever) holds a special place in my heart.
Running or walking? Walking!! I am so NOT a runner!
Road trip vacation or resort vacation? Resort all the way. My husband has spoiled me with some really amazing trips.
Day at the beach or day hiking in the woods? Hiking in the woods (as long as there’s no ticks UGH!). But I do love the beach!
Android or iPhone? iPhone all the way
Sunshine or rainy day? Sunny days
Dinner out at a restaurant or a nice home cooked meal? Since I do all the cooking, (and love it!) home-cooked meal but it’s nice to have a day off now and then too.
Doing the dishes or doing laundry? Laundry is less painful
Comedy or horror? Comedies forever. If I’m watching a horror film it’s because I’m being tortured.
Fiction or nonfiction? 75% of the time I’m nonfiction. 25% fiction.
Cake or pie? Apple pie
Fruit or vegetable? Raspberries and lacinato kale
Sunrise or sunset? Sunset. But I’m an early bird lol
You’re in the waiting room about to leave after a follow up visit with your doctor. 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?
Faith. Hope in God. Even if you’re not a Christian, He exists and loves you more than you could ever fathom and He can use this trial to bring you closer to Him. You just have to allow Him to. Even in my darkest times when I felt like I would never get better, when I was struck with anxiety, depression, anger, and only the tiniest shred of hope, God was always there. It was me who had left, not Him. God is good. So I had to learn to stop focusing on the bad and focus on the good in all things. Whenever I’d be zeroed in on all the negative, I never felt happy. When I stopped doing that and would try to find joy in even the small things that’s when I started to get better.
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?
Coffee or tea?
Hot or cold?
Sweet or sour?
Charmin or Cottonelle?
Neither! Seventh Generation
Dog or Cat?
Running or walking?
Road trip vacation or resort vacation?
Android or iPhone?
Sunshine or rainy day?
Dinner our at a restaurant or a nice home cooked meal?
Doing the dishes or laundry?
Doing the dishes
Comedy or Horror?
Fiction or nonfiction?
Cake or pie?
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!
About IBD Podcast: https://itunes.apple.com/us/podcast/about-ibd/id1228402052
Have you ever come across an Instagram post and just thought, “YES! This is my language! Finally someone is speaking it.” Well, Callie at @riverandquill is this person for me. I found myself nodding my head, smiling, laughing, tearing up and saying OH MY GOSH YES to so many of her interview responses. She has an amazing talent for writing, and I think many of you will find her journey with chronic illness, hope, and grief very relatable. Grab a cup of tea or coffee and settle in to read my interview with Callie to below. Make sure check out her social media and then blog here as she writes about her journey with health and healing. Thank you for sharing your story, and filling others with hope, Callie!
What chronic condition or illness are you currently battling?
I really love your writing on your blog and Instagram posts, you have great voice. What inspired you to start writing about your journey with chronic illness?
I’ve received a lot of requests for this post over the last year, and figured our first anniversary would be a good time to answer those questions. Here are my top 5 tips for enjoying your wedding day despite a chronic illness.
- Make time for yourself.
The morning of our wedding was absolutely gorgeous. I spent some time alone in the morning before everyone arrived at the house doing yoga, sipping on a cup of coffee and writing a letter to my soon to be husband. (Instead of sand or candles, we decided to write each other a letter and to put it in a box together to open on our first anniversary. Every anniversary after we will write another letter and open the one from the year before.) I watched the sun rise over the river, wrote in my journal a bit and basically gave myself a few moments to just be.
I knew that if this short hour to myself would likely be my only alone time, and I savored those moments and gave my body some well deserved self care and relaxation. It really helped me get present for the rest of the day and to make sure I was focusing on what really mattered. This step is important throughout the wedding planning process also. It can be so challenging not to get wrapped up in the pinterest boards and the details and trying to make everyone else happy that you forget about yourself and to pay attention to what you need. When you’re fighting against your body, you have to listen to what it says while it is whispering instead of waiting until it is screaming at you to stop and make a change. Make it a habit to make time for yourself.
2. Surround yourself with people who lift you up.
Ain’t nobody got time for negativity. I’m so blessed to have the most amazing tribe of girlfriends who all bring their own unique character traits to the table. My girls balanced me, kept me grounded, supported me and kept me smiling. My husband’s guys kept me laughing and everyone was troupers as it started to rain moments before we were about to walk down the aisle.
My family that day was amazing. My dad particularly went above and beyond to make sure everything was as it should be and that everyone was having a great time. We were overwhelmed by the love and generosity by every guest and were surrounded by love all day.
I know that not everyone has this type of environment or support systems. If this is the case, consider who you really want to be surrounded with when you make the biggest promise of your life. What kind of energy do you want to bring to your day? Physical energy is flaky with autoimmune disease, and I find that when I’m surrounded by people who are at a lower vibration (or who don’t enjoy life), I lose zest.
Invite the people who bring light in your life. Make them a part of it. Don’t feel guilty if you don’t invite your coworkers dog-sitter or your mom’s cousin’s kids that you haven’t met, ever. This is about you and your husband and who you love, and who loves you best. You won’t regret surrounding yourself with awesome people, you might regret inviting Debbie Downer.
3. Put someone else in charge on the day of.
Whether you hire someone, loop in a friend or family member, or get the DJ to take over, get someone to take the lead on the big day.
My best friend from high school was my hostess with the mostess, and even while pregnant she took charge and smiled the whole time. My cousins were in charge of pouring champagne, and my stepsister served drinks with the help of her friend. My in-laws were in charge of clean up the next day. “People want to help you, and you should let them,” was the persistent advice of my future mother in law.
This was probably the hardest advice that I had to take. I’m big on “No thanks, I’m good,” and can handle everything on my own. I know I can handle it, but sometimes you just shouldn’t have to. Particularly on days like today where the celebration is about you. Pass the torch and let someone else take over making sure the centerpieces are all set and that the guys have their boutonnieres and to make the decision on whether to continue the ceremony in the rain or take an hour to move everyone inside. This is your time to enjoy all the things you created, not to think or stress.
Breathe. And be grateful.
Not everything is going to go exactly as you planned.
And those moments are the best ones. Let go of expectation, and just enjoy every moment for what it’s worth. We had the most relaxing morning at my home getting ready, and all of a sudden I was supposed to meet my future husband for our first look in 15 minutes and my makeup wasn’t done and I wasn’t dressed and we had taken zero bridal party pictures and everyone was asking if I was okay. I felt myself rushing and getting tied up in freaking out for a minute and then took a breath and remembered that the show can’t start without us. We’ll have plenty of opportunities for pictures, for everything little. We’re getting married today. I’m alive. Nothing else really matters. So I took a deep breath, let it go, and went back to enjoying myself.
Things are going to happen that you don’t expect or maybe didn’t want to happen. But in the end, these moments will be the best and you’ll look back on them again and again throughout the years.
You might cut your foot open 5 minutes after wearing your shoes and have to change into flip flops right before you walk down the aisle, but at least you’re comfortable.
It might be sunny until the moment you have to walk down the aisle and then it may decide to rain. But you’ll get the greatest picture with your dad in an umbrella.
You might not get all of the pinterest-worthy golden hour photos you anticipated, but you’ll have some hilarious moments with the bridal party as you are stuck in an old ice cream parlor.
The best man might swear in his speech and it may go on for a while, but you will laugh and it will be one of your favorite memories and something that will be talked about forever.
The flower girl and ring bearer might not want to walk down the aisle. But they are absolutely adorable so it doesn’t matter.
The dog might follow you everywhere all night and even interrupt the daddy-daughter dance, but you’d rather have him there with you than not at all.
Those unplanned, unintentional moments are the best.
5. Pay attention to your hands.
Weird advice, I know, but hear me out.
You will look at your hands every day of the rest of your life. Likely they’ll now have a ring on the left hand to help you remember this day, but if you focus on your hands, you’ll remember more of the moments.
With chronic illness, our hands often go through a lot. They are constantly being washed to prevent infection, sometimes they are being poked with an IV for medications, and sometimes they are squeezing or clenching in pain. Our hands hold a lot of memories. Having good ones when you have to go through something tough can make it a little easier. Here are some of my favorite memories:
I think about the mimosa I held and the piece of turkey my future cousin-in law handed me while my makeup was getting done.
My hand tapped on my future husband’s shoulder when we met for our first look.
My hand gripped by bouquet that was made by my cousin, wrapped with my great grandmothers brooch she wore to her wedding. My fingers touched my necklace that was made from diamonds from my other great grandmothers ring.
My hand linked through my dad’s arm as he walked me down the aisle.
My hands met my husbands as we stood in rain, looked into each others eyes and stated our vows.
My hands were lifted as we were married and ran together down the aisle out of the rain.
My hands wrapped around my friends and family as we laughed and took pictures.
My hand was covered with my husbands as we cut our cake.
My hand held a glass of champagne as we said cheers, and held the hands of others as we prayed.
My hands wiped away tears as both sets of my grandparents danced as they shared the dance for the “longest married couple.”
My hands held more hands as we all danced and laughed and danced.
And most importantly, my hands were held, by my best friend, my forever partner in life
and were promised they’d always have another to hold.
My birthday wish this year is not for a cure for IBD.
This year, I’m asking for something that might be much harder to accomplish: better care for patients.
My wish is that no one ever wakes up post colonoscopy to be told:
“You have a disease with no cure, come back in two weeks.”
Instead, I wish for an IBD army of advocates to be in every hospital, with arsenals of accurate information and resources they are ready to provide to that new patient so they are filled with hope instead of fear. Let’s avoid the Doctor Google search and arm patients with the facts right from the start.
I wish for mental health care to become a standard component of the IBD treatment plan. When a patient feels isolated, lonely and full of anxiety at the thought of even leaving the house, it is hard to feel better or to heal at all. I wish we would teach coping skills and connect patients with mentors who can relate to their experiences. We must have the tools to fight IBD together and find ways to work, have relationships and (most importantly) enjoy life again.
I wish for patients to be seen as people instead of dollar signs and numbers. I want to break the communication barrier between the front of the office, the patient and the doctor. Let’s celebrate the nurses and doctors who empathize, and teach the ones who don’t. I want two-ply toilet paper in every hospital bathroom, and ear plugs and eye masks to help patients rest. Let’s stop with the 4 am blood draw and focus on the patient who needs rest in order to heal.
I wish for prednisone to only be prescribed when absolutely necessary. I want patient care to move on to better alternatives for treatment that don’t cause such long term damage. We must educate about alternatives, and that surgery to remove an intestine is not a cure. We need to talk about life after surgery, about ostomy bags and j pouches and remission, and how the fatigue never goes away.
My wish for World IBD Day is that we connect with one another, with pharmaceutical companies, hospitals and GI offices all around the world. Let’s share our stories and compare what is working and what needs to change. I wish for those changes that will improve the lives of patients and caregivers and for those that will give a little hope to the newly diagnosed. Let’s make a change and spark some hope globally.
Happy World IBD Day.
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!
Good morning friends. No smoothie to share today as my husband is still sleeping and I didn’t want to wake him with a roaring blender. I do have a cup of Tazo Earl Grey tea sitting here though. I love the smell of Earl Grey. That hint of lavender is delicisou Do you have a favorite kind of tea you’ve been drinking lately? I’m always looking for new ones to try.
I still don’t think I am recovered from daylight savings. Monday was great, and it all went downhill from there. I’ve missed my morning yoga practice every day. Just can’t quite wake up out of the fog. It could be this weather too. It’s been a winter advisory pretty much all week, grey sky, sleet, snow or ice. Shmarch. 2qqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqsw
That was a hello from Jojo the Cat. She’s also been a devil to deal with in the mornings and wakes up about an hour before dawn encouraging everyone else to get up and greet the day with her. Even with a full bowl of food, she is a morning person on steriods and just wants you to wake up, wake up, wake up! I should just start getting out of bed when the animal alarm clock wants me to instead of dozing in and out of dreams for another hour. I’m just so tired. The fatigue never goes away.
When I’m done here, I’ll be working on my grocery list and will try to head up to the market before everyone else and their brother get there. I love going to Horrocks, it’s a local farmers style market that we have here. They sell delicious varieties of fresh produce and locally sourced meats as well as other items from area bakeries. And they have free coffee. Can’t beat that.
After groceries I’m going to see Beauty and the Beast with my Aunt and cousin. I’m not much of a movie goer these days, but I loved the cartoon and I’m really excited to see the live version. Going to a movie is one of those situations that revolve around food, and I just have a hard time getting excited about those anymore. Movie theatre popcorn may be the one food item I miss the most post UC that I can’t find a replacement for. The smell, the mouthwatering buttery salty flavor..mmm. My college roommate and I used to go to the movie theatre just to get a bucket of popcorn and then go home to watch our own movies or shows. It was my favorite snack.
Digestive diseases aren’t usually a fan of the little kernels however, and my Ulcerative Colitis is completely against it. So, I’ll probably be smuggling in some coconut chips and maybe I’ll find some corn syrup free gummy bears I can slip into my purse. Living on the edge and smuggling snacks.
It is amazing how many situations in our culture revolve around particular meals or snacks. This has been a huge adjustment for me in coping with this disease, finding other foods or finding other ways to celebrate. I know it can be much harder for those with feeding tubes or other illnesses, and I’m lucky I have foods that I can eat. Change is difficult, and watching others not have to make those changes while you do can lead to a pit of self despair. I try not to go there and just make a decision to find a new way to enjoy it. Like today, for example. I could be jealous of the people with giant buckets of popcorn that surround me, but instead I’ll choose to be grateful for the time spent with my aunt and cousin, and to look at this opportunity as a blessing instead. It helps me to reverse the negative thought process towards gratitude. Do you come into these kinds of situations? Try it out and let me know what you find happens. Or if you have any other tips for those food centered holidays and gatherings.
Enjoy your Sunday. 🙂