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.
I was lucky enough to meet Jordan in person at an Ulcerative Colitis Patient Panel hosted by Pfizer about a year ago. He was one of the first patients with a jpouch that I had ever met in person, and he gave me hope that if I ever had to take that route for treatment, my life wouldn’t be over. Instead of letting the diagnosis of Ulcerative Colitis shatter his life, he’s taken this new lifestyle as a second chance to enjoy as much as possible. Thanks for taking the time to answer a few questions and share your story, Jordan!
When were you diagnosed with Ulcerative Colitis?
I was diagnosed with Ulcerative Colitis in June of 2010.
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?
I remember waking up from the colonoscopy and having my mom in the recovery room with me. I was still pretty out of it but my doctor said he could tell right away it was UC. I was pretty cloudy for most of the afternoon and I don’t think the severity of the diagnosis really sunk in until the follow up appointment. Looking back, if I could tell myself one thing about the diagnosis, it would probably be to make sure to listen to my body. There were times where I was so consumed with having the right mental attitude about it that sometimes I would ignore the obvious physical pain I’d be in.
I love that you hashtag some of your posts #lifeisa10. Will you share a bit about what life is like with a jpouch? What other medications/treatments/surgeries/lifestyle changes have you gone through to manage your disease symptoms?
Yeah that’s the hashtag I thought of using for all of my Instagram posts! It just sums up how I feel now. I’ve been living with a healthy j-pouch since the spring of 2013. It really has given me a second lease on life. I was in real bad shape before my surgeries. Of course, life is different now, and as cliche as it sounds, it is a “new normal”. But it’s so much better than being sick. I went through the catalog of medication before my surgeries, pills, enemas, infusions, suppositories, etc. Now the only thing I take is a multi-vitamin and a probiotic. A lot different from the days of 18-20 pills a day. I also pay attention to my diet and exercise, eating pretty clean 6 days a week or so and working out just about every day, at least once a day. The mental benefits are just as important as the physical benefits I’ve found.
By the way, congratulations on making the homepage for the Crohn’s and Colitis Foundation! Love what you are doing to raise money for the foundation. I really can’t pick between you or Will riding shirtless, so I’m donating to both campaigns. Either way, so fun! What is your favorite part about being an IBD Advocate?
Thank you! Yeah this whole riding shirtless bet has given me a ton of new motivation to stay in shape! We’re humbled to have been chosen as the national faces of the spin4 crohn’s & colitis cures event for the Crohn’s and Colitis Foundation. My favorite part of being an IBD advocate is the opportunity to travel while helping others. I’ve been lucky enough to go to Washington, D.C., Fort Lauderdale, Orlando, New York, San Francisco and Atlanta while sharing my story and contributing to different advocacy projects. I’ve made it my mission to be a voice of positivity among IBD advocates because I feel there is a lot of negativity out there, especially in the online communities. I didn’t have anyone I could talk to who had gone through what I went through, so I want to be that guy people can turn to. I feel like if we can use our past experiences to help someone, it’s our duty to do so.
What are some of your other favorite things to do outside of IBD awareness and education?
Outside of creating IBD awareness I enjoy my “day job” which is a Realtor in Orange County, California. Another opportunity for me to help people. My hobbies and passions include fitness, reading (I’m in a book club and read a new book each month), riding my motorcycle, traveling, cooking (more importantly, eating!), and just spending time with friends.
What is something you have accomplished that you are most proud of?
I can think of two accomplishments right off the top of my head that I feel most proud of. I was able to study for and successfully pass the state real estate exam from a hospital bed. It was during the 5 month period of my j-pouch surgeries when I had some downtime and was able to study and take the necessary tests. The second thing is all the advocacy work I’ve been able to accomplish just since September of 2016. It’s given me a renewed sense of purpose and I’m really passionate about using my experience to help others.
Who inspires you?
Someone that inspires me is my friend/mentor Jay O’Brien. I’ve known him for about 16-17 years. He recruited me to work with him in the real estate office. The way he handles his business inspires me to strive to provide the best experience possible for my clients. Not only that, he’s also one of the most generous and selfless people I’ve ever met. He continually does things for others, not expecting anything in return or recognition.
What are some of your coping mechanisms for dealing with stress?
I’m not sure if I have any coping mechanisms for stress. I think I’m pretty lucky that I’ve trained myself to be more patient and calm these days. I do a pretty good job of letting things roll off my back and not taking too much too seriously. I use exercise as a way of meditation. Whether it’s weightlifting or indoor cycling, I use that time to clear my head and recharge.
What has been the best thing that has happened so far that would not have happened if you did not have IBD?
Other than meeting other amazing advocates like you? Honestly, the people I’ve met through my advocacy work have been absolutely incredible. Being introduced to the IBD community has been one of my life’s highlights.
What keeps you hopeful?
What keeps me hopeful is the thought that the best is yet to come. So far things are getting better and better and I can’t wait to see where things are headed.
Do you have a favorite saying, quote, mantra or song that you turn to when you need to flip your mood around?
Life is a 10! I am always reminding myself that it could always be worse. Even after all the pain and discomfort I’ve been through, it’s nothing compared to what others are going through.
Okay, time for rapid fire this or that:
Chocolate or Vanilla?Vanilla
Coffee or tea?Neither. Does Red Bull qualify?
Hot or cold?Cold
Sweet or sour?Sour
Charmin or Cottonelle?Cottonelle, I’m all about the little ridges
Dog or cat?Dog
Running or walking? Or Cycling? Walking and Cycling 🙂
Road trip vacation or resort vacation?Resort vacation
Android or iPhone?iPhone
Sunshine or rainy day?Sunshine
Dinner out at a restaurant or a nice home cooked meal? Dinner out
Doing the dishes or doing laundry? Laundry
Comedy or horror?Comedy
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?
In this situation I’d give them a couple pieces of advice. First thing I’d say is to keep your sense of humor through the journey. If you don’t learn to laugh (at yourself, especially) you’re going to lose your mind. The second piece of advice I’d give is to be your own advocate. Learn as much as you can, take your health into your own hands, and never stop asking questions. You’re going to get through this.
Make Sure to Say hello to Jordan and follow his awesome advocate work on his social media accounts below.
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.
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.
Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography
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.
Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography
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.
Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography
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.
Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography
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.
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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.
4. Whoooosahhhhhh
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.
Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography
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.
Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography
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.
Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography
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.
Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography
The flower girl and ring bearer might not want to walk down the aisle. But they are absolutely adorable so it doesn’t matter.
Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography
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.
Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography
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.
Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography
My hand tapped on my future husband’s shoulder when we met for our first look.
Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography
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.
Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography
My hand linked through my dad’s arm as he walked me down the aisle.
Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography
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.
Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography
My hands wrapped around my friends and family as we laughed and took pictures.
Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography
My hand was covered with my husbands as we cut our cake.
Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography
My hand held a glass of champagne as we said cheers, and held the hands of others as we prayed.
Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography
My hands wiped away tears as both sets of my grandparents danced as they shared the dance for the “longest married couple.”
Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography
My hands held more hands as we all danced and laughed and danced.
Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography
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.
Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography
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.
I’m not apologizing for it. I needed it and it was enjoyed. Today I decided it was time to come back. I’m refreshed, ready to make some changes, to make some new connections and to offer my story and support for Ulcerative Colitis patients and others.
One of these changes will be Self Care Sunday Chats. While on this break from blogging about my life with Ulcerative Colitis, I’ve been focusing a lot on listening to my body, and acting on what I hear.
Remission is great, but it is tricky. Remission doesn’t mean that my body works exactly like it did before I was diagnosed with Ulcerative Colitis. It is still a different form of life that takes adjusting and getting used to. Some days I feel as though I never had this disease in the first place, and then I have to go into an infusion center to get my medication for 4 hours and I am reminded that life really is different. Some days I wake up feeling great, and some days I’m so exhausted I can barely take my eye mask off my eyes when I wake up. Every day is different, but there is good in every day.
I am well aware of how lucky I am to be in remission. This awareness was part of the reason that I needed to take a break from the community in the first place. I needed to enjoy this moment in my life and focus on the blessing of not having active disease instead of complaining about my past with it. I needed to figure out where I fit in this community now that I wasn’t flaring or trying to find a treatment plan or a good doctor. I have those things. It’s amazing, and it’s taking a long time to get there, and I don’t know how long it will last. I wish all Ulcerative Colitis patients could have these things.
When I was hearing stories of my friends in the IBD community suffering, my heart would just break and I would feel like I needed to apologize for being in remission. There are so many others who were struggling to find a doctor who would listen to them, or who were recovering from surgery without infections or having terrible reactions to medications. I felt like no one wanted to hear about how my medication and lifestyle changes were working or how I had a doctor who actually follows up and takes the time to hear my full story with this disease. I didn’t want to come across as bragging or arrogant. There were articles being tweeted around and polls about how people didn’t want to hear about success stories because it didn’t help them feel better.
Maybe some people don’t benefit from hearing about any positive outcomes from Ulcerative Colitis. I can understand that. And I accept that. We all have different ways of coping or not coping. The reason I’m still sharing my story is because I think about the person who comes out to the blogosphere after receiving a diagnosis. After typing in the disease in the search bar and hitting enter, how many of those articles are going to contain horror stories? How many are going to talk about how it is STILL POSSIBLE to have a life with Ulcerative Colitis? It might be a different life than you expected or planned for, but it can still be enjoyed.
So, that’s why I’m back. I’m back for the people I’ve connected with, and for the people I haven’t met yet who are looking to find out how life can still be enjoyed with a chronic illness.I’m back to share, to support, to connect and most importantly to share the joy I’ve found with this disease. Yeah, there is still no cure. It still is a beast and a terrible disease. But I’ve managed to find joy through it all, and I’m sharing that.
What I’ve Been Up To
My husband and I have set off on our own adventure this year, and started another blog to share our travels. If you’d like to check it out click on the link here: www.mibreakfastadventure.com
He bought me a nice camera for Christmas and I have fallen in love with photography. I’m actually attending my first photography club meeting this weekend and I’m so excited. You can see some of my photos on Instagram @mibreakfastadventure . We have been traveling to various breakfast joints across the state and just exploring those areas and sharing what we find. It has been a blast so far, and we have seen so many beautiful things. I’m truly happier than I have been, perhaps ever.
I’ve stopped trying to force myself and my body to morph into something that it is not made to be. It was becoming easy for me to rush, rush, rush and stress to make everything perfect. Instead of working with my body I was trying to beat it and push it to be “normal.” I can’t beat my body. And it’s not productive or healthy to keep trying to. I have found it more beneficial to care for it, and that’s how self-care Sunday came about.
Self Care Sunday
For these future Sunday posts, they’ll basically just be chats written in the morning about whatever flows through as I’m typing here. I’ll share what I’m doing to care for my body today, and anything else that comes to mind.
This morning I just drank a matcha green smoothie and a gluten-free donut because I’m all about that balanced life. I plan on going for a quick brisk walk in a bit here, quick and brisk because it is about 8 degrees outside with the windchill and I am not all about that.
This afternoon I plan on running through some practice questions for an interview I have on Monday for a new position in my office. I’ll get the laundry done and the dishes put away, and spend some time sorting mail and then maybe color for a little bit. Eventually I will get the veggies and fruits chopped and prepped for the week ahead, and sip on some mint-infused water throughout the day. I might even curl up with a book if it sounds good. Basically, today is about active rest and getting prepared for the week ahead.
I’ve added to my routine the practice of “what is done is done.” After 8 pm, if there are chores that still need to be completed, they can wait because I am now done for the day. I make a cup of hot tea, sit down in the lazy boy and snuggle up with my pets. I might read a book, I might watch a TV show or just listen to some music. I might call my grandma. I might hop on social media. Whatever I feel like doing at the time. After 8 pm, chores and obligations are done. No work, no laundry, no dishes, just restoration and enjoyment. It’s an hour to get my mind right and end the day on a good, peaceful note before heading to bed. It has been so beneficial, I highly recommend it to anyone.
My challenge to you is to test it out this week. Set aside a time for yourself where work or chores are not allowed. Make it work for you. Maybe nights aren’t good and you need to do mornings. That’s okay. Or maybe it’s in the middle of the day. Just take the time. Turn off your phone. Connect to yourself. Try it, and let me know how it goes!
Today I started another Yoga with Adriene 31 day yoga challenge. I’ve participated in these practices for the past 2 years and have always benefited from them so I’m excited to see what this round has in store.
The theme is Yoga Revolution, and the mantra or focus for Day One is Ease, or Sukha.
According to Wikipedia, “Sukha (Sanskrit, Pali; Devanagari: सुख) means happiness, pleasure, ease, or bliss, in Sanskrit and Pali.”
Can someone please tell me why you wouldn’t want a little Sukha in your life? I’m making this my word for 2017. Happiness, pleasure, ease, bliss, sign me up!
Today I was pretty wiped from being up late last night. Even though I didn’t drink, I didn’t sleep my normal amount and didn’t eat as carefully as I should have. Sluggish and a bit nauseated would be an accurate description of my demeanor. I still woke up early though, and I didn’t want to waste the morning. I grabbed my camera and sat in the frosty grass on the riverside in front of our house to capture some really awesome sunrise photos and watch the ducks and geese float in. Check out my instagram for more photos! @flareuphope
Then I started my practice. And I carried it with me through the rest of the day. Finding ease. Finding pleasure. Finding bliss. We went exploring on some nature trails, visited a town we had never traveled to and grabbed a burger at a hole in the wall a few towns away, making it home in time for an afternoon nap.
What will be, must be. The house is a disaster. My insides are mad at me. But I’m sitting in my chair, snuggled up in a blanket with my dog and cat and sipping on some lemon water, and I’m perfectly content.
Finding the ease seems to lead to bliss. Bliss shouldn’t take effort to be achieved, it just seems to happen with the least amount of effort.
Can’t wait to see where the rest of this challenge takes me in my healing journey, and with my life in general. If you’d like to join, it’s completely free and I’ve linked the YouTube channel below.
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?
Oh boy. Please keep in mind that this is a rant and ramble and if you’re easily offended, just skip this entry.
Diving right into it, the atmosphere on social media, Twitter in particular, has totally bummed me out lately. I don’t know what is about having 140 characters that causes people to just complain and attack and complain some more.
It sucks the life out of me and makes me not want to be a health activist in the first place, and makes me question if I want to keep writing.
There’s a ton of false information out there, and people retweet the click bait headlines without bothering to read the actual article and then are attacked for retweeting it and it just turns into this argument of one chronic illness person who was simply trying to share some good news, or what they thought was good news, to an attack.
Or someone shares their experience and gets shamed for it.
Or someone shares their political views and gets blocked by everyone else.
Or someone complains about the way one disease gets treated over another. Or one persons treatment choice over another. Or gets attacked for not knowing something about their disease.
It’s like we’ve forgotten to be humans. We’ve forgotten how to support one another and can only compare the bad stories.
It gives me all the ill feelings.
When I first came to Twitter, I found a community, a place to relate to people who were experiencing the same disease that I had, and place for support, for laughs, for encouragement.
It’s been a while since I have felt supported out there, truthfully. I’m not saying the advocates themselves aren’t doing a good job. Most of them are and I’ve been lucky to meet some them and feel supported by them in person or on other social media outlets. What is it about twitter that has changed where this is so hard to find? Are the people who are having a good life just not sharing it because they are too busy living it? Or has Twitter just become the place to complain about your life, and it’s not a spot to find support any longer?
This might cause some ripples, and I really am not trying to point anyone out or say that Twitter isn’t helpful. I’ve met some of my favorite health advocates out there. I’m just saying what has come across my feed recently, and it makes me sad. I’ve muted a lot of people lately, and I’ve added accounts that promote positive messages.
I’m certainly not saying that everyone has to be happy all the time. It’s important to share your truth, but that doesn’t mean attacking others for their experiences and it doesn’t mean every post has to be droopy and dreary, or every post has to be sunshine and rainbows. I just miss the rawness and hopefulness of it. Where’s the encouragement and laughter?
I’m ready for Tuesday because I’m not going to get sucked in to the complaining and attacking that occurs on social media, and I’m not going to let determine my outlook anymore. I’m not going to contribute to the divide. I am going to continue to promote my own message of health and positivity, and continue to share my story authentically and offer support and encouragement to anyone who accepts it.
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.
Flare Up Hope 