Gratitude Challenge: Day 5- Sweet Treat

Yesterday I was at a patient panel in Atlanta to help improve the availability of resources and support for people with Ulcerative Colitis. I’ll share more on that later, but I can tell you that I was SO excited to find a sweet treat I could purchase at the Chicago O’Hare Airport while waiting for my return flight home.

Gluten, corn or soy were not included in my diet after I was diagnosed with Ulcerative Colitis. While removing these items did not cure me or push me into remission, I do believe they help keep me there. I did an elimination diet to find out what foods made me feel bad or good, and these three were all on the bad list. I have tried to reintroduce them previously but have not had any positive results so far.

To satisfy my sweet tooth, and I have a serious sweet tooth, I have a lot of home-made paleo baked goods, and every time I’m at the grocery store, I read the back of every single chocolate bar to find one without soy in it. It is so exciting to find one that doesn’t have it, though they are rare.

I received a gift from my closest friends that included all kinds of recipes specific to my diet restrictions and that book had some really yummy looking marshmallow treats in it. Unfortunately when our basement flooded that book became a casualty and I haven’t bought a replacement yet. I haven’t had marshmallows in 3 years. This might not seem like a big deal, but I love a big cute mug of hot chocolate with some marshmallows in the winter.  A mug of chocolate almond milk does the trick now, but I’ve had to go without the gooey sweet mallows for a while because they are all made of corn syrup.

Well, that all came to an end last night. I found Katherine Anne Confections at the airport and they had homemade marshmallows and they are delicious. I ate one at the airport last night and then enjoyed another in my coffee this morning. Sam wanted some too. Sometimes its the little things to brighten up your day, like a sweet treat you haven’t been able to eat in years that you find in an airport. Mmmmmmhmmmmm.

 

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Will Essential Oils Cure IBD?

No, they won’t. There is not a cure for IBD. 

They do, however, smell amazing and have some pretty cool benefits that could improve your attitude and maybe ease some physical symptoms, and perhaps much more. (Disclaimer: I am not a doctor, I am not providing advice, I’m sharing what I learned at this workshop and my experience with essential oils thus far. I encourage you to do your own research.)

I took an essential oils workshop last week at Hilltop Yoga in Oldtown and really gave my scent sorter a workout. It was very interesting and educational, and I took away a few items that I’m bringing to my home environment. Maybe it will help ease some symptoms and increase quality of life or maybe it will just make my home smell amazing. I can find nothing wrong with being surrounded by good, natural smells that I enjoy.

So what exactly are essential oils? Essential oils are taken from plants in concentrated forms. Oils are broken down into a few categories depending on the plant itself. They could be roots, trees, herbs, blooms, seeds or other plant parts.  For example, Chamomile is a bloom while Thyme is generally considered a herb. The oil itself in pure form is used in aromatherapy practices and each oil has a different properties and different practices depending on what it is composed of.

One of my favorite moments of this workshop was at the beginning when the speaker stated that nothing she says here is going to cure an ailment. Essential oils aren’t cures, they are not evaluated by the FDA, but they have been around and used in medical practices since the beginning of time. She wasn’t forcing anything and saying you MUST use this if you have digestive conditions or you MUST do this if you have anxiety, but she talked about what symptoms the oil is known for helping to ease and what she’s found by experience in her own life. The sense of smell is highly personal, a lot like IBD treatments/symptoms where one size doesn’t fit all. Someone may really believe that rose essential oil (known for easing grief) eases their anxiety and offers comfort. For you, rose might remind you of your grandma who passed away and make you more depressed. You have to find what works for you, what feels good for your lifestyle, and it might be different every day. Maybe today the smell of Lemon makes your home feel clean and refreshed and tomorrow Eucalyptus brings you the focus you need to write that blog post you’ve been putting off for weeks.

I love that approach. Find what gives you that spark you need today.

If you’re curious about some of the more popular oils and some that maybe you haven’t heard of, I’m sharing a few of my favorites that I jotted down in my notes from that day. Most of what she was saying she was reading out of one of the books she had brought to class, which I believe was from Essential Oils Natural Remedies: The Complete A-Z Reference of Essential Oils for Health and HealingShe also stated that she had many other resources and had been studying for over 20 years so was also sharing her own personal experiences.

Again, I’m not providing advice. I’m sharing what I learned some of these oils have been found to help with throughout history and by other individuals in aromatherapy. This may not be true for you and you should always consult a medical professional for advice. 

Marjoram: known for pain relief. Smells like Vick’s vapor rub to me, which I oddly find soothing.

Thyme: increases white blood cells. Good in combination with citrus oils for diffusing.

Bergamot: boosts happiness. Works well in areas that experience Seasonal Affective Depressive Disorder. It smells like an awesome sunshine blue sky day. Will probably get some of this for Michigan mid winters, when it’s grey and the sun hasn’t shown its face for weeks.

Cloves: this was my favorite scent of the day. It is known to provide comfort, is full of antioxidants to boost the immune system and is useful for treating depression and anxiety. This was the scent I chose to leave with, she put some drops in almond oil and told me to rub it on my neck hairline as I left class. I went grocery shopping after and got whiffs of the scent throughout the rest of my day. It honestly improved my mood each time I smelled it.

Myrr: known for healing wounds and was used for that purpose in ancient Greece. It’s a really thick, dark resin. It may assist in reducing inflammation in the digestive system.

Chamomile:reduces mood swings and eases PMS symptoms.

Lemon: uplifting, inspires positive thinking. Fresh and purifying.

Peppermint: cool, stimulating. Can aid head and muscle aches and promote a healthy digestive and respiratory system.

Lavender: stress reducing, comforting, relaxing.

If you’re looking to start bringing essential oils into you home, you could start with just a spray bottle from the dollar section at the grocery store and distilled water.  Throw some drops of your oil of choice in the bottle, add the water and then spritz around your home as you desire. Maybe keep it in the bathroom and spritz it on the shower curtain before you jump in, on the bathmat, fan, really wherever you want.

Then, if you find it’s really something you look forward to and want to invest in a diffuser or burner, you already know you like the scent and if it makes you feel better. If you want to use them with a carrier oil (like almond, coconut etc) and mix a few drops in then rub on you neck, temples, hands, whatever, BUT do your research first.  Some of those essential oils, like peppermint or cinnamon, are so strong they can actually burn you if you put them on your skin directly without a carrier. If you have animals in your home, make sure the oils you are using are pet friendly. While we are on the topic of research, I’m just going to go ahead and remind everyone that not everything you read on the internet is true. Use your brain, have an open mind but be cautious. Look at who is writing the article.  Again, I’m not an essential oil expert, I’m just sharing my experience. Think for yourself.

On my own essential oil adventure I made a yoga mat spray with tea tree and lavender and it’s awesome. I used tips from Adriene and the video is here. Do you use essential oils? How? Let me know! Find what smells good.

 

Resources: Aromatherapy. University of Maryland Medical Center. http://umm.edu/health/medical/altmed/treatment/aromatherapy

Sponsored Post: Review of Neo 185 Bidet

I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

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I wish I had one of these during my last flare! I think it would have saved me a lot of discomfort.

I was a bit intimidated when I received the box, I am no plumbing expert and wasn’t sure I would be able to install in myself. Luckily my fiance and I (mostly him) were able to get it put in and installed within about 20 minutes. It did leak a bit at the back where the tubing is attached but we fixed that with some plumbers tape and haven’t had any problems.

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As for the actual use, it’s definitely different from what I’m used to, but I don’t hate it. I still used toilet paper, mostly to try off but also to make sure there wasn’t anything left behind. It is super easy to use and the self cleaning part is great. We have really hard water so it will be interesting to see if it holds up, so far so good. I’ve had it installed for about a month and a half now and have had no issues. It doesn’t take up a lot of space. I’m not currently flaring (!), but I think that if I were it would get a lot more usage to save my bum from that dreadful burn. The box talks about some of the benefits and I think they’re all true! 20160517_183121.jpg

You can find out more about the product here:

http://www.amazon.com/dp/B00P2XZDGG

http://luxebidet.com

Hope Warrior-Courtney

Wooie it’s been a while. As per usual. Sorry about that. I would give an explanation, but I’ve truly just been busy and enjoying life. Not going to apologize for that because you should be doing that too! That’s part of why I’m so excited to share with you this featured Hope Warrior. I first found Courtney on instagram under an IBD hashtag, but loved the hashtag she uses most, #thrivingNOTfighting.

What an awesome concept. With any autoimmune disease, fighting for your life is sometimes a daily task, and sometimes it is literally what your are doing. This mantra, if you will, isn’t really for that literal fighting for your life time, but more for the times when you are constantly fighting against having that disease. What would happen if you turned that mindset around and used that energy to think about how you can thrive with your disease instead of fighting against it all the time? Just an idea, and I think she’s a great example of what that looks like. Meet Courtney, everyone, and show her some love

What type of chronic illness/autoimmune disease (s) do you live with? 
1. I currently live with Crohn’s Disease.
When was your diagnosis? How did you cope?
2. I got diagnosed in January 2012. I believe I got to this point by going through the normal grieving process. At first, I was very angry. As time went on, I found people like me, became educated about how to make myself feel better, and did a lot of trial and error with things that I learned. Once I knew more about how to help myself, I took my power back and began to let go of the anger that I felt.
What medications/treatments/surgeries/lifestyle changes have you gone through to manage your disease symptoms? 
3. When I was first diagnosed, I was put on Entocort and 6MP. Throughout the early part of this new chapter of my life, I was off and on Entocort a lot, but I never liked it. I felt angry and sad all of the time and for no reason. I was hungry 24/7 and gained a large amount of weight in a very little amount of time. I was so miserable and hated looking at myself in the mirror. After the massive weight gain, I told my doctor that enough was enough and that I wanted off of Entocort, which was successful. I’ve been on 6MP since my diagnosis, but just recently started Remicade infusions every 8 weeks to get a bad flare and some pretty intense inflammation under control.
Although I’m taking medications to help me feel better, I truly feel that the work that I am putting in outside of that is what is helping me the most. I’ve completely changed my diet over the past year, eliminating most packaged and refined foods. I’ve also noticed that, for me and due to the narrowing that I have in my colon, animal products don’t settle that well with me, so I am currently eating a plantbased diet. This was only possible after working with a holistic nurse practitioner who helped me to reset my gut bacteria and restore some normalcy to my digestive system. I’m also working hard on trying to keep my stress in check, practice lots of self love and do things every day that make me truly happy.
What are some of the things that you’ve found trigger a flare up in your disease?
4. For me, animal products make me feel bloated and uncomfortable, so I’ve eliminated them from my diet (as of right now). Also, anything with gluten makes me angry, have severe brain fog, and makes my stomach crampy, so I eat as gluten free as well.
Stress is also another huge trigger for me. Personality wise, I seem to be a highly sensitive person. When others are upset, or sad, I tend to take in that energy without knowing it, which affects my moods. When I am highly stressed, my digestive system responds by exacerbating my symptoms. After becoming aware of this connection, I’ve made it a priority of mine to keep my stress levels as low as I possibly can.
If you could tell yourself one thing looking back on your diagnosis, what would it be?
5. Looking back, I’d tell myself something that my mom told me back then (and I didn’t listen): “Focus on your health first and foremost and your appearance will take care of itself.” At my worst, I was so focused on how much I hated the way that I looked because of Crohn’s Disease, that my mind couldn’t focus on anything else. If I had just listened to my mom and focused on helping my body re-learn how to be healthy, I probably would have helped my appearance get better faster.
Another thing that I would tell myself is something that someone very inspiring told me recently: “Love is the only thing that matters.” If we really think about what we are “fighting” when it comes to living with an autoimmune disease, we are only fighting ourselves. That anger and resentment that all patients have early on is necessary for us to grow, but continuing that thought process years and years down the road might only hinder true healing.
Do you have a saying or quote or song that you turn to when you need to be uplifted? 
6. My mantra came to me about 6 months ago.. For so long, I was a “Crohn’s Warrior” because that’s what I thought I had to be. Its what I read in forums, articles and on social media. However, I didnt really resonate with that. As I’ve embarked on this journey, I’ve learned so much about holistic health/alternative medicine. In my studies, I learned about energy and the power that words have on our minds. It may sound weird, but I came to the conclusion that I didn’t want to fight my body the rest of my life. Crohn’s disease, however uncomfortable and infuriating at times, is now a part of me, and I wanted to learn how to work with my body to thrive with my new reality. That’s when #ThrivingNOTFighting was born. I truly believe that if we learn to love ourselves (including the parts that are less than “perfect”) and our new life circumstances, that we can thrive while living with autoimmune diseases.. We just need to start talking about this and make it a part of the IBD conversation, so that it becomes mainstream.

“My song” is Brave: by Sara Bareilles. I love that song because it is a constant reminder to push myself out of my comfort zone, chase my dreams, put myself out there and be brave. Even though I am living with Crohn’s disease, I won’t let that stop me from making a difference in this world and helping other people.

 Things that keep me hopeful: 
– seeing IBD patients want to learn about alternative medicine/holistic health in order to help ease their symptoms and improve their quality of life.
– knowing in my gut that what I am doing to help myself is helping me heal in all aspects of my life.
– finally knowing what its like to feel like “me”. The changes that I’ve made since being diagnosed have been so natural, yet so unexpected, but I finally feel like me. It’s an amazing feeling and I wouldn’t change it for the world.
– realizing that, if I push myself out of my comfort zone, that I can accomplish so many things that I thought Crohn’s disease had taken from me.
– being able to (hopefully) help and inspire other people like me to truly love themselves and their lives and to help them become healthier so that they can thrive with IBD.
– support from my family, friends, and people that I’ve never met. All of these people continue to support and push me to be better, even when my dreams seem insane.
– knowing in my heart that sharing my story and being open about what I go through has healed me more than I ever thought possible.
What are some of your coping mechanisms for dealing with stress?
8. My favorite coping mechanisms to deal with stress are: exercise (running, yoga, other forms of movement), lavender essential oil, meditation, journaling, coloring, making homemade green juice or smoothies, among others. Also, sometime you just need a good cry, and that’s okay too.
What us your favorite food or drink that makes you feel better? 
9. My favorite thing to eat/drink when I’m not feeling well is green juice and any kind of smoothie. Even when I have those bad days, I really try to choose foods that will still give my body the nutrients that it needs to help heal. Also, I love potatoes (random) but eating them in any form is super comforting when I’m not feeling my best.
Who do you seek hope and inspiration from? 
10. As I meet others who live with IBD, I realize how lucky I actually am. Other people are recovering from multiple major surgeries or are having hard times and are still living their lives to their best ability, and I find that super inspiring, so I pull inspiration from them. I also have a particular IBDer who I think is one of the most inspirational people out there. Her name is Sarah Choueiry Simkin, the founder of The Crohn’s Journey Foundation. Throughout her journey with Crohn’s Disease, she has always tried to help others, hence founding TCJF. She put all of herself into the foundation and made sure that other IBDers had different options to help them feel their best, and I find that truly admirable. Even as she goes through her own rough times with her disease, she always puts others first and truly cares about the many people who have followed her journey. If you don’t know who she is, you should because there’s no doubt that she’d inspire you too!
If you could paint a picture of your favorite place to be, what would be in it?
11. I have a few favorite places, but I’ve found that the place isn’t what makes them my favorite. I want to be surrounded by people who I truly care about and can have authentic conversations and laughs with, eating food that makes me feel good and that tastes good as well, and be able to be fully myself. Being able to have those types of interactions and true friendships are priceless.
What has been your greatest accomplishment?
12. I think I have two “greatest” accomplishments that come to mind. The first: getting offered a guest blogger spot on The Crohn’s Journey Foundation’s blog, where I was able to write about what I cared about and share it with the foundation’s followers for six months. Sharing what I loved and being able to share my story publicly has helped me grow in so many ways and I wouldn’t be the person that I am today without that opportunity. I am now the co-president of The Crohns Journey Foundation and am so thrilled to be able to help other IBDers through this non-profit! The second: running my first ever half marathon with Team Challenge and raising awareness and funds for the CCFA. Participating in that race not only helped me feel like part of a community, but helped me break through a self imposed barrier. I had always told myself that I wasn’t a runner and that I could never run that distance, let alone in a certain time frame. I did it, with high heat and humidity and some intense hills, and it felt so amazing. Crossing that finish line helped me realize that the limiting beliefs about myself and my abilities due to my disease are there because I put them there and I’m working on taking them down, so that I can achieve more of my dreams!
Social media accounts /website? 
13. My Instagram is: CMMaiori.. You can find me on Facebook by searching for Courtney Maiorino and my health coaching website is:www.TheGutsyGuru.com. You can follow The Crohn’s Journey Foundation on Instagram: crohnsjourney, on the web:www.thecrohnsjourneyfoundation.org, and on Facebook: search The Crohn’s Journey Foundation!  🙂
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Attached  is a side by side “transformation” picture. The left: two years ago, when I was at my heaviest. I hated the way I looked and felt and didn’t know any other way to help myself feel better. The right: this past June, listening to one of my favorite bands.. I’m also smiling, but my hair is longer and shiner and my face is way slimmer. What you can’t see is what is most important: I have learned to thrive while living with IBD, have made taking care of myself my most important priority and finally feel like me! I have also found my purpose and how I can help people, which is the most amazing feeling in the world! 🙂

Hope Warror- @gypsie_spoonie

It’s people like this that remind me of my purpose. It is people like this that give me hope, and that I hope you, my dear reader, will help me give that hope back to those who need it. 

 

“Rock bottom became the solid foundation on which I rebuilt my life.”

I’d like you all to meet Carrie Ann.

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Not only does she post beautiful photos on instagram (@gypsie_spoonie), she battles 10+ illness every sing day, including muscular dystrophy. Muscular dystrophy is a disorder that involves massive muscle weakness and loss of muscle tissue, and it gets worse over time. Eventually every day tasks that many of us take for granted be taken away from her.

Carrie is a beautiful, optimistic, inspirational, honest and determined hope warrior. She has bounced back from multiple setbacks. Her first attempt at college she worked 2 jobs to make ends meet and ended up having to leave due to health complications in May. But she’s a fighter, and she’s going back. And she continues to put forth the effort to be a source of inspiration for others. And she is one.

My whole purpose for this blog was to give a little bit of hope to other people when they needed it.

Carrie needs it. She doesn’t have any family nearby, and she needs a service dog to help her go back to school and continue to be an unstoppable force. If you have anything to give, please think about donating to help Carrie get a service dog.

You can view her web page and donate here. Not only will the dog be of use for those every day tasks that become more difficult, but she also has a pacemaker and the dog would be trained to alert her if need be.  If you can’t donate, please share the link with someone who can.

Spark Hope. It only takes a little spark to start a fire. www.gofundme.com/carrieanm

Hope Warrior- Lo

It’s warrior Wednesday!  I’d like you all to meet one of the most beautiful, kind and determined IBD battlers I’ve “met” since my diagnosis. I found Lo on instagram shortly after my first colonoscopy and she’s been a constant source of support and encouragement ever since. Not only does she kick ass at this disease,  she climbs boulders. Literally. Get to know Lo a little bit below and find her on insta @readysetlo7.  Thanks for being you girl, you give me hope daily.

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My name is Lauren Barros and I’m 26 years old currently living in Dallas Texas. I’m originally from Huntington Beach California (California girl through and through). I was officially diagnosed with Ulcerative Colitis Proctitis in December of 2012. I started showing signs of being sick (and I mean really sick) in 2006 the summer I graduated from high school. It took a Dr. (believe it or not) 6 LONG years to finally figure out what was going on. Let’s just say since 2006, it’s been a roller coaster of ups and downs in the emotion category of life.

The day I was diagnosed, my Dr. looked me in the eye as he handed me a prescription and said “your life will improve and all will be ok”. Oh what a load of lies that has proven to be. Since being diagnosed, I have been on many forms of medication such as: Lialda, Canasa, Cimzia, Prednisone, Uceris, Humra etc. Right now I’m not on any form of medication. Reason being, either nothing has worked or the side effects have been too awful. I’ve recently taken a trip to the Cleveland Clinic where I hope that a team of Dr’s can finally help me out. Why Cleveland? Well lets just say that I haven’t been given any help here in Dallas. And this girl isn’t looking to waste anymore time! I’m ready to LIVE!

Since being sick, I’ve learned so much, not just about myself, but about suffering in general. God has given me this experience to have a heart for hurting people and how to be there for them. I know that through all my own suffering; my calling is to be on the front lines helping others carry their burdens.

I’m not going to lie to you and make myself sound like a freak of nature who never gets down in the dumps about my condition. I struggle just as much as anybody with an illness. The hardest thing for me personally has been the mental battle of what UC has brought me. Even when being in short periods of remission (honestly though what’s being in 100% remission?), there are still other side effects other than going to the bathroom that have stuck around. Side effects such as: joint pains, night sweats, being so tired that just running a few errands during the day leave you drained for the rest of the day, not being able to be as active as others etc.

I’m a very outgoing girl who loves to be on the go all the time. I love doing things outdoors such as: camp, hike etc. The hardest part mentally has and still is not getting down and depressed. I’ve seen my body change from a tough rock climbing chick with beautiful muscles to a fragile 116 pound girl who has nothing but skin and bones for a body. I look at myself in the mirror periodically and wonder “how I got this way?” (yeah thanks UC ahah).

But with that being said, I’ve learned to take these struggles and own them. This disease may be taking a hold of my body, but I refuse to let it own my mind.  There are way too many beautiful things in this world that fill me with JOY. This disease is a little thing in a world that‘s filled with worse. It all comes down to perspective.

When life tries to take a hold of my joy, I hold true to Romans 5:1-4 “Therefore, since we have been justified through faith, we[a] have peace with God through our Lord Jesus Christ, 2 through whom we have gained access by faith into this grace in which we now stand. And we[b] boast in the hope of the glory of God. 3 Not only so, but we[c] also glory in our sufferings, because we know that suffering produces perseverance; 4 perseverance, character; and character, hope.”

I like to think of myself as a warrior who wakes up everyday ready to fight the IBD battle. And everyday this warrior strives to win the battle of IBD.

IBD has given me the chance to meet so many AMAZING people! Many of my closest friends have IBD and daily we lean on one another and fight this battle together and never let each other fall. I met my boyfriend Drew through Instagram, who he himself has battled Crohn’s for 14 years and now lives a wonderful life with an Ostomy. So without having IBD, I would never have met him or any other of my BFFs.

My mission is to get my face and name out there and spread love, joy, hope, smiles, and tears to all those who not only suffer with IBD, but all of those who suffer with an kind of illness. I just want to help others!

Love you guys and please know that a lot of your suffering is just a season in life. Keep your chins up and know that you weren’t given any more than what you can handle. And you aren’t alone.

Keep it up my little warriors,

Lauren Barros AKA Lo

Hope warrior- Becky

One of my dearest friends is the feature for this week’s hope warrior. Becky was diagnosed with lupus a few years ago and other diseases have surfaced since then. When she was first diagnosed it was hard for me to understand what had happened.  This was my happy go lucky, ice cream scooping, sunshine soaker, laughing best friend, and stuff like this just didn’t happen. I didn’t understand her disease or what she was going through, but I tried to be there the best that I could.
When I was diagnosed with my auto immune disease, Becky was one of the only friends (in person) who really understood what I was feeling,  how it was being in the hospital and dealing with the ups and downs and side effects of medications. I don’t know what I would’ve done without her encouraging messages. We lift each other up when we need it, and listen without judgement when we just feel like saying this isn’t fair. Thanks for being so awesome Bex. Couldn’t get through this without ya.

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Here’s some questions Becky answered for me.

What is the number one thing you’ve learned about yourself since your diagnosis?
I’m so much stronger than I’d ever thought I could be.

When were you diagnosed?
I was diagnosed when I was 22 with Lupus, Sjögren’s syndrome, RA and fibromyalgia.

What are your current medications/what lifestyle changes have you made to treat your disease? I currently take plaquenil and lyrica. I
no longer drink alcohol, instead tons of water, I try to eat healthy, take walks and do yoga and plenty of rest.

How do you keep your mental health intact while dealing with the symptoms/changes of the disease?

I’ll be honest I still get mad that there is not a cure along with loads of frustration about feeling sick so often. But the people around me and therapy help me deal with it. They have shown me that it is ok and perfectly normal to feel that way. Allowing myself to get angry from time to time keeps it from building up inside. I’m not perfect, I get mad, but I’m happy person.

What do you struggle with most?

I struggle most with feeling ill so often from flares, the meds or just bad days. Sometimes I feel that it’s a lose -lose situation. In those moments I think about the good times and that’s what keeps me going.

What are you doing to overcome it?
Accepting it helps me overcome it.

Any advice for newly diagnosed?
Stay strong and you aren’t alone!

Rules to live by?
Do what’s best for yourself and be happy.

Quote you turn to when you need to be uplifted: “just keep swimming” 

Music/Song: Avicii, wake me up

Go to Snack when feeling unwell: Broccoli cheddar soup with bread.

Activity that lifts your spirits:
Walking my dogs and yoga

What would you do with a million dollars?
I would open a no kill pit bull rescue.

Who do you admire?
My mother; she’s the strongest person I know.

What is your mission?
My mission is to live the happiest healthiest life I can.

You can give Becky some love and support on instagram @Bex_Alida

Keep on sparking hope!

Hope and Guilt

Guilt. A bad feeling caused by knowing you did or thinking that you have done something wrong, according to Webster.

With this disease, I’ve been struggling with feelings of guilt. Guilt about taking medications, being in pain, being unable to attend events, eating, sleeping, and many other things. Mostly though, I feel my guiltiest when I feel like I’m being lazy, or at the thought of being viewed as lazy.  I often find myself pushing to get through an entire to do list of errands and tasks. And for what? To prove that I have what it takes to run errands and feel accomplished? To show I’m a functioning member of society? To show that I’m capable? These are all noble attributes and nothing worth scolding myself for. So I can knock tasks off my list without a single nap. What am I trying to prove?

I feel like I’m fighting my disease in this manner. I want to do it all. I want to be that friend, that girlfriend, that daughter, that advocate, that yogi, that writer, that inspiration. I don’t want to have this disease impose limits on me or give it control over my life. But, I’m learning, there’s a difference between succumbing to my disease and letting it defeat me: or accepting the disease as part of me and learning to live WITH it.

Yesterday, I was exhausted. And I felt so guilty about sleeping in and laying around for a couple hours watching Netflix and then reading out on the porch. It was Saturday, and I was down on myself for going easy. Granted, I slept less than 5-6 hours a night this week. I was released from the hospital a month ago. I returned to work full time 2 weeks ago. I’ve moved houses, started remicade infusion and now my body has been hijacked by steroid side effects. I’m wringing my eye mask out and stripping out of drenched clothes in the middle of the night from sweating. My face is swollen, my joints ache, and I swing from happy to sad to wanting to throw things every ten minutes. And I’m feeling guilty about wanting to do nothing for a few hours on a Saturday morning.

I don’t want to make excuses. I grew up with a mom who struggled with depression disorders and always needed naps before doing the dishes or couldn’t make it to events or clean or remember commitments because she was too tired. I understand more about her illness now and don’t judge her for needing that time. I know now that this is just part of her, and she does what she can. But I hate when I need it for myself. I have the ambition and I want to feel accomplished. I don’t want to be viewed as lazy or unable.

But I am limited right now.

I’m still healing. And this disease does not have a cure. This disease does not have a cure. When is this going to sink in? Even though I’m nearing remission, I’m still going to be battling this and dealing with symptoms for the rest of my life. This is an autoimmune disease. My body attacks itself. And I’m fueling the fire with guilt about it. So how do I go from battling and fighting to acceptance and building a life around it?

I need a plan.

First of all, time to stop the negative self talk. So, I’m tired. That does not make me a miserable excuse for a human being. It makes me human. A human with a chronic illness. Is it possible to be tired and happy at the same time? What a novel idea.

Step one: If you’re tired, be tired.

But you don’t have to be upset about it. Just be tired, do what you can, and move on .

So you can’t get to all the items on your to do list of the day. Can some things get done tomorrow? Of course. What is really important? Is it even on that list?

Step two: Determine what is important to you

PS.. It should be what makes you feel good. Why have a list of things to do that make you feel worse? You already have a disease trying to do that, remember?

Now time to face the big guns. As much as I don’t want to admit it, there’s a part of me that does care what other people think. Luckily, I have an awesome support system that listens to my ramblings and tends to love me anyway. Other people outside of my circle don’t matter so much. But my inner circle, I don’t want to disappoint them. Sometimes it feels like they’re waiting for me to be “back to normal,” whatever the hell that is. And I don’t know that going back to who I was before is ever going to happen. I might always be a little bit limited. My endurance and strength may never be where they were before, at least physically. Mentally I could blow away the competition in those two categories. I know they’ll love and accept me anyway, but again, I don’t want to disappoint them. They’ve fought right along with me in prayer and hope and positive thinking and I don’t want them to let them down by not healing fully. I know it’s something that will take more understanding and acceptance what this disease really is. And I have to come to terms with this as well. I’m just not the same. And that’s not a bad thing.

Step 3:Talk to inner circle. Believe them when they say you are strong and it’s okay to rest.

They don’t think you’re lazy. They want you to be healthy and happy too. You aren’t letting them down by taking care of yourself. This is the part that you need to do in order to heal and make those prayers answerable.

 

So, these are the things I’m going to work on while embracing (wince) my inflammatory bowel disease. Dear colon, I hug you. Let’s be friends, okay? We’re in this together. Anyone else out there deal with the guilt? How do you manage?

Hope and prayers

I really don’t know where to begin with this post. I’ve been putting it off for a the past few weeks. Why? Well, nausea for one. I haven’t been able to look at a phone screen or read much for the past few days. But the second reason is it’s uncomfortable.  Writing it down makes it all real. Makes me face it. I want to punch it in the face. I want to kill it. I hate it. But I wouldn’t let anyone else fight this battle for me. Some days I look in the mirror and have no idea where I get the strength to stand. But God gives it to me. And I know He is going to heal me. I just have to keep the faith.
Currently I am blasting ocean waves through my headphones to try and tune out the puking of the insanely sick person they roomed me with. Yep, I’m back at the hospital.  Steroid injections and fluids.  Last chance to try for remission before we go to remicade. This time they have me hooked up to an iv pole so I’m more restricted.  Oh, how I want my life back. 
But nevermind. I’ll get it back.
So, the point of this was to provide and update and some Hope in Prayer. Let’s get back to that.
2 weeks ago I was admitted to the hospital for steroid injections. On Day 2 we discovered that the reason I had not been responding to treatment before was because I had a parasite! It hadn’t shown up on any test before, and we have no idea how I got it. GIARDIA.  Somewhere along the line I drank some contaminated water.
So, we did another day of iv steroids to no avail and sent me home with a flagyl prescription and pill steroids, on top of everything else. Flagyl did not react well with me. I had so much stomach acid, my whole body ached all the time, diarrhea, blood loss, weight loss, and mix in the emotions of not healing, missing work, having to stay with my mom because I couldn’t take care of myself, missing out on the celebration of our new home with my boyfriend and my doctor changing the treatment plan every time I leave the office. I am a mess.
Last Friday, my GI wanted a colonoscopy. I knew it wasn’t a good idea. I was still on the Flagyl.  My insides we’re a mess. But she insisted and I agreed and went through with it. She was only able to see about 25 cm. Nothing good.
So, she decided my only option is remicade. And we scheduled the testing that was needed to proceed and scheduled the infusion. I sent out a mass request for prayers from my family about what the right choice was and what I needed to do going forward and just asking for God to heal me.
The next morning, the hospital called and said the tb test results were indeterminate. Thing is, I never had a TB test. The doctor called it “serendipitous” and called me and said maybe we could go back to the original plan of steroids and imuran instead (anyone else seeing the roller coaster I’ve been riding!?)and we would talk more about it at my appointment on Thursday.
Thursday comes around. We go to the appointment. I’m weak. I weigh 105 lbs. She says I have a choice. Admit to hospital for steroid injections or go straight to remicade. Because the injections had not worked previously, I chose the remicade option. And we left feeling confident and went to the hospital for a chest xray,  cbc and tb test.
An hour after we went home, my doctor called me from her cell phone and said that her gut is saying I really need to be admitted for steroid injections. And her partner thinks so too. I couldn’t believe it. Another change in plans.
I spoke with my family.  And we all agreed maybe we’re supposed to give this one last shot . Maybe we need to exhaust all options. So I called her back. And the next day, today, I’m admitted.
They had to call the iv team to get me started because my veins are all shot. But I’m hooked up with fluids and steroids now. And now we wait. And we hope. And we pray. Pray for healing. Pray for understanding. Pray for Hope. I’m so emotional from the steroids I’m crying at everything from a cat food commercial to song lyrics to a kiss from my dog before I left today. I miss being happy. I miss sleeping next to my boyfriend. I miss driving my car and going to work. Feeling accomplished. Feeling strong.
But I know I’ll get back there some day. God has me in his arms. I’m not going to ask why I’m going through this. I’m just going to get through it. One teardrop, one breath, one step at a time.

I do apologize if this makes no sense and I’m all over the place. It’s just how I am right now. Thanks for listening, and for your prayers if you make them. I need them. And I will pray for you too.