flareuphope

My World IBD Day/Birthday Wish

Posted on by flareuphope

My birthday wish this year is not for a cure for IBD. 

This year, I’m asking for something that might be much harder to accomplish: better care for patients.

My wish is that no one ever wakes up post colonoscopy to be told:

 “You have a disease with no cure, come back in two weeks.”

Instead, I wish for an IBD army of advocates to be in every hospital, with arsenals of accurate information and resources they are ready to provide to that new patient so they are filled with hope instead of fear. Let’s avoid the Doctor Google search and arm patients with the facts right from the start. 

I wish for mental health care to become a standard component of the IBD treatment plan. When a patient feels isolated, lonely and full of anxiety at the thought of even leaving the house, it is hard to feel better or to heal at all. I wish we would teach coping skills and connect patients with mentors who can relate to their experiences. We must have the tools to fight IBD together and find ways to work, have relationships and (most importantly) enjoy life again. 

I wish for patients to be seen as people instead of dollar signs and numbers. I want to break the communication barrier between the front of the office, the patient and the doctor. Let’s celebrate the nurses and doctors who empathize, and teach the ones who don’t.  I want two-ply toilet paper in every hospital bathroom, and ear plugs and eye masks to help patients rest. Let’s stop with the 4 am blood draw and focus on the patient who needs rest in order to heal. 

I wish for prednisone to only be prescribed when absolutely necessary. I want patient care to move on to better alternatives for treatment that don’t cause such long term damage. We must educate about alternatives, and that surgery to remove an intestine is not a cure. We need to talk about life after surgery, about ostomy bags and j pouches and remission, and how the fatigue never goes away. 

My wish for World IBD Day is that we connect with one another, with pharmaceutical companies, hospitals and GI offices all around the world. Let’s share our stories and compare what is working and what needs to change. I wish for those changes that will improve the lives of patients and caregivers and for those that will give a little hope to the newly diagnosed. Let’s make a change and spark some hope globally.   
Happy World IBD Day.

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Hope Warrior -Kristen Boehmer

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It’s a new Hope Warrior Wednesday!

I’m so happy I get to share a little bit of Kristen’s story and how she copes with having a chronic illness. She’s a busy gal, but was able to answer a few questions. Make sure to check out her website Living Loving Paleo and her instagram @livinglovingpaleo for some mouthwatering food photography and her life with Crohn’s Disease.

Meet Kristen!

I was checking out your story on your website (I will link it here), and boy have you been on an unbelievable journey. I know you were young when you were first diagnosed with Crohn’s Disease, but do you remember how you felt when you received the diagnosis?

Being diagnosed with a chronic disease isn’t something that I could fullyunderstand as a kid, which in some ways, made it easier to cope with. My parents immediately took full responsibility for my health, but at the same time, I did have to grow up quickly.

Taking 96 pills a week at age 12 is a lot to swallow, no pun intended. What would you tell a pre-teen going through something similar right now?

I would tell a pre-teen that no matter what, they should never, ever give up. It may feel like your world is falling apart, but if you allow it, your illness can actually become your greatest gift.

It is really frustrating when I feel like some doctors are not hearing me. It sounds like you went through something similar. How do you advocate for yourself now?

I’ve found a practitioner outside of conventional medicine who really listens, and that’s made all the difference. Thankfully I’m healthy enough now that I don’t need any sort of outside intervention.

What is your current treatment plan? (Natural and pharmaceutical if applicable)

After spending many, many years on medications, I’m now able to control my disease completely through diet and lifestyle. I eat what makes me feel good and live a life that I love.

 Your website has lots of delish Paleo recipes. What inspired you to start Living Loving Paleo?

I wanted a place where I could share my journey (outside of social media) as well as my recipes, so a blog felt like the perfect format.

How do you balance working full time with managing your chronic condition and spending time with your family?

While I have Crohn’s Disease, it’s thankfully no longer something that I need to manage. I work from home and accomplish much of what I need to get done while my husband’s away at work (he works 48 hour shifts as a fire fighter), so that when he’s home, we can spend much of our time together.

You talk about the fatigue, waking up tired and going to bed tired when fighting infections and the ongoing battle an autoimmune disease fights with your body. Do you still have days like these? What do you to conserve energy?

My health is by far the best it’s ever been, so thankfully those days are VERY far and few between! If I do come down with a cold or the flu, I simply set everything else aside and completely focus on my health. My immune system is fully functioning now, so I’m very rarely sick for more than a couple days.

 We went to San Francisco on our honeymoon and feel in love with the city. I am so jealous that you get to live near a city with the best coffee and some awesome food options! Eating at a restaurant can be difficult for IBDers who are afraid or embarrassed to ask their food to be cooked in ways specific to their needs. Do you have any tips for handling these scenarios? 

I have a great dining out guide where I’ve shared all my best tips and tricks! It

can be found here – http://livinglovingpaleo.com/2016/06/15/tips-dining-

paleo/

I truly believe that our environment can play a huge part in healing. Do you have an area in your home that helps you gives you the hope you need to keep fighting? What does it look like?

I really do my best to keep my entire house filled with calm, healing energy.

How do you treat yourself when you want to indulge?

I get a mani/pedi or a massage and take myself out to lunch!

What are some of your favorite books and or music/podcasts?

I love reading and have too many books that I’ve enjoyed to list off. As for podcasts I love Balanced Bites, The Sessions With Sean Croxton and The Tim Ferriss Show.

If someone were to ask you to tell your story in one sentence, what would it say?

Although my journey hasn’t always been easy, it’s given me the most beautiful life I could ever imagine.

 Do you have a mantra or an image that you use to give you strength or encouragement?

I recently heard Tony Robbins talk about achievement versus fulfillment, and it really stuck with me. I don’t have a specific mantra or image, but I believe in filling my own cup up before I can give to anyone else. When I’m fulfilled and loving life, I put out my best work.

What are some of your hobbies and activities you enjoy?

Cooking, reading and being outside with my husband and dogs.

Where are some of your favorite places to travel?

Hawaii for sure!

 

Who gives you hope? Do you have any “Hope Warriors” that inspire you?

While my husband has always been my number one supporter, he’s taught me to love and cherish myself first, so I’ve become my own “hope warrior.”

 

Thank you so much for sharing, Kristen!  I’m so glad you’re doing well and enjoying a beautiful life. Love your story, and I’m honored to share it. 

Happy Wednesday Folks!

Hope in the Internet

Posted on by flareuphope

When I was going through my first major flare and found support on social media, it was incredible. There were so many supportive, understanding and encouraging people checking in on me, sharing their experiences and relating to what I was going through. I gained so much strength from some amazing people and their ability to care about strangers in the same predicament they were in or had been before. I loved opening my twitter app and checking the ibdfamily hashtag, and looking for others who had my same diagnosis under ulcerative colitis or autoimmune disease on instagram. I have formed some great relationships with some of those people and they are all very dear to me. That may be why I get so upset about seeing a change in the ibd community out here in the social media sphere.

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Every single person I know with IBD has a different treatment plan. Every single person. Some might be on the same medication but one doesn’t eat gluten. Some may use stress relief practices to prevent flares along with biologics to keep inflammation at bay. Some might be on steroids and following an SCD diet. And the list goes on.
So, why am I seeing so many attacks on people for their choice of treatment? A treatment should be between that individual and their medical professional.  Who am I to judge their choices?

Disclaimer* I’m not referring to when someone tells you “you must use walnut oil and you will be cured.” Forcing a cure on someone that was not asked for is rude. Particularly when it’s absurd and false and maybe more harmful than good.*

What I am referring to, however, is the “you can’t sit with us,” vibe going on when someone shares their story. Oh, you’re using a combination of meds and diet to treat your disease? Well, this is firmly a diet treatment only ibd community. Find another table to eat lunch at.

Or.

You’re not taking any medication? How dare you.  Take down your post about having Crohn’s disease and go be alone.

Who are we helping when we exclude others from the community because they follow a different line of treatment? This disease is lonely enough as it is, and there’s so much good and bad information out there, attacking others does not help anything. It makes people scared to talk about what’s going on. It takes us steps back instead of forward. 

I’m not saying everyone is like this. I have some great ibd family members who support and encourage and make me and others laugh and smile and they’re great. This has just been weighing on my mind a lot the more this community grows and I’d hate to see it turn into a negative attacking environment after it was such a haven for me when I found it 2 years ago.
I like to hope that it won’t become that way and that we can put these treatment differences aside and fight this disease together. We’re all fighting against the same enemy,  doesn’t help anyone to turn against each other in a right or wrong battle on the Internet Ibd community when it comes to sharing experiences.
There’s no reason to become mean and attacking for one persons choice of treatment when they are just sharing their story. And there’s no reason to push a form of treatment on someone just because they say they have a certain ailment.  This used to be a place of support and connection in the lonely world of invisible illness, and my hope this week is that it can stay that way for others who are desperately searching for someone who understands what they are going through, like I was when I first came here.
Please be kind, remember everyone is fighting a battle of some sort.

Hope warrior- The Wolf and Me

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Hi everyone!  Happy Warrior Wednesday. It’s invisible illness month. I wanted to bring attention to the lovely Cass, the person behind The Wolf and Me. If anyone knows what it’s like to have an invisible illness, it’s her. She battles each one with a fierce attitude, and is always sharing encouragement with anyone else fighting the same fight. Send some love her way and check out her blog, instagram or twitter! Happy March, hoping spring arrives quickly if you’re dealing with any of this crazy winter like we have been. Now read on to find out more about The Wolf and Me. She has some great insight on coping with a chronic illness.

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1. I have a lovely (sarcasm) variety of chronic illnesses 11 in total! My main culprits of hard times and pain are SLE Lupus, chronic fatigue syndrome, fibromyalgia and connective tissue disease…The last is still under investigation. I have other things like Raynauds syndrome too but it’s not a naughty as the others.

2. My journey into the chronic illness world began when I was 20 although I’m sure it began at 15 however I was undiagnosed then! At 20 I became ill at university with the flu that seemingly never ended and it was here that I was diagnosed with CFS and fibromyalgia. Since then the other diagnosis have come in almost one a year.

Coping with diagnosis is tough but for me it was coping with what diagnosis meant that was tough more than coping with hearing what is wrong. Especially so young when I wanted to be going out and having fun but ended up staying in all the time sleeping….although I watched some great movies during this period.

3. Treatment for me is complicated due to the amount of different illnesses in play. My lupus is controlled through chemo currently methotrexate with cytoxan coming in and out of play….This treatment reduces my immune systems white blood cells and thus stops it focusing on destroying me. I am also on Hydroxy chloroquine for this and folic acid to help with the chemo.

For pain I take 900mg of Gabapentin a day and codeine. This helps with fibro and lupus pain.

For me though, the best thing I did was get creative again. I now paint and draw at times of extreme pain. I find that distracting myself this way keeps me active and positive. Along with this I have changed my diet cutting out dairy and introducing items like pineapple that are natural anti-inflamtories.

4. My diseases are triggered by many things, some I can control and some I can’t.

My biggest triggers are illness and stress. I can’t do much about getting sick especially when on chemo but the stress I’ve worked very hard to understand and try to control. I now know when I’m under too much stress and can pull back to find a happier place but this has left me unable to do certain things such as too much traveling.

Other triggers are certain foods like rice that cause me pain, lack of rest and the cold weather!

5.Advice for newly diagnosed : There wouldn’t be just one thing there would be an entire book full of things! But to pick one thing it would be “Don’t panic”. By this I mean don’t start Googling the diagnosis, don’t rush through the millions of questions, don’t lose sleep over it. Take it one step at a time and know that everything will be okay.

6. I have numerous quotes and songs I go to at times of trouble. I love to read certain books especially mainly any book with an internal struggle within it such as Lord of the Rings or even the Hunger Games books. I also love my vinyl collection and when I’m really struggling I turn to Fleetwood Mac as I find their songs to be the kind that reflect many emotions so there is always one that will lift you up.

7. Being hopeful really is a constant state of mind that I have worked hard on over the years. I find that by saying to myself the things I’ve achieved throughout the day I can be hopeful for tomorrow.

It’s very easy to focus on the things we’ve lost or the things we cannot do anymore, like my beloved swimming. So I find by focusing my energy on the things I can do I can be hopeful that tomorrow will be another day full of achievements.

8. To cope with stress I always head straight to arts and crafts. I find that many of them have meditative qualities, even doodling can be therapeutic.

Along with this I also find fresh air helps immensly. When I can I will go for a walk but that’s not always possible. On bad days just sitting by an open window and practising deep breathing really helps me to calm down.

9. Ohhhhhh I have a sweet tooth! When I feel really low I turn to carrot cake it is my ultimate treat! I don’t deny myself treats for fear of putting on weight etc. I think everyone deserves to have something they love every now and again if it’s going to bring a smile to their face!

10. What inspires you? This is a tough question as for me I believe hope comes from within yourself. I am constantly inspired by all of my friends and family everyday in reality. My partner for example is so head strong and grounded that this inspires me to remain in the now.

What inspires me the most are people who are positive in the face of adversity. Sometimes we become so involved on being ill that we forget that everyone on the planet is dealing with something we don’t know about or maybe understand. If you can get up and smile everyday then you are inspirational.

11. My picture would be a simple beach. The water would be clear and the sun would be shining. There would be calm colours all around me and tall trees in the distance with bird song. It would be a place I could sit and read a good book, feel no pain and maybe just watch the waves roll in and out.

12. My website all about chronic illness and positivity can be found at
http://thewolfandme.com

If you want to follow me then come say hi on instagram @thewolfandme or
on Facebook
https://m.facebook.com/pages/The-Wolf-and-Me/253558044825384

Lastly I just want everyone to know that time is a wonderful thing and however hard it maybe now it does get easier! Love to all

Sparking Hope Again

Posted on by flareuphope

I want to apologize to you all for not posting the past couple of weeks. I didn’t want to do a post because I wasn’t feeling true or all that hopeful, and I didn’t want to force it.
When it rains, it pours and usually for someone with an autoimmune disease,  it flares.
I had a family emergency during week 6, and week 7 started experiencing some nasty symptoms that hadn’t appeared since May. When I saw the blood, I immediately started sobbing. No, no, no, no, no. This isn’t happening again. I sat on the bathroom floor and cried while my dog licked the tears falling from my face. I was crying so hard my fiance thought I was laughing. I came out of the bathroom and he saw my face and jumped up. I couldn’t speak enough to tell him what was wrong between crying so hard,so he just held me for a while until I could get it out.
It’s back.
I wasn’t prepared for that type of reaction from myself. I can’t remember the last time I cried that hard. the memories of being in the hospital came flooding back.  All the pokes, the unanswered questions, the pain, the steroids, the side effects. I wasn’t ready to go through all that trial and error again. To miss out on the world again.

While I blabbered  on about everything going through my head my fiancé reminded me to stop and just take it one step at a time. My next infusion was in 5 days. Maybe it’s just triggered from the stress of the previous week and being so close to refill time. I wasn’t in a lot of pain. No urgency. Just blood. Terrifying, but just blood.

So, I’m taking it day by day. I’m praying. A lot. I got my remicade infusion on Friday, and the blood has diminished,  though not completely gone yet. But I’m good. I’m taking time away, and I’m taking care of myself. I’m getting my hope back. Spark by spark.
For the next two weeks I have nothing planned but sunshine and relaxation. No work. No negativitiy. No anxious thoughts are allowed. Only love, and gratitude, and laughter are welcome here.
I’m going to be writing down three grateful moments everyday, to keep myself accountable. I’ll post them for you on Sunday. I need to hit the refresh button over here so I can keep bringing the hope to all of you. I’ll be checking in on twitter and instagram,if you need anything at all. Thanks for your support. You all mean the world to me.

Hope Warrior-Astrid

Posted on by flareuphope

Please bear with me while the blog undergoes some updates. It’ll be back to being pretty, clean and organized soon!

It’s a brand new year, thank goodness. I had the greatest new years eve, this year surrounded by many of my favorite people. Last year I had to worry about being close to a bathroom, this year, I knew I would be okay. Last year, I was about to face the biggest health disaster of my life so far, and this year, I was laughing and smiling and crying tears of joy.  Totally different from last year. I’ve never been so grateful in my entire life. There are days I wake up and I honestly have a hard time believing that the treatment is working. But it is. I’m alive, I’m well, I’m happy, and I’m so, so blessed.

To kick off the new year, I’d like to share Astrid’s story. When I was at my lowest point with this disease, she was always leaving me encouraging messages and continues to cheer me on as I do well, and when I need  a little boost. She seems to do that for everyone that she sees struggling or battling an aggressive disease like IBD. If there were more people in the world that shared the same caring attitude that Astrid did, no one would ever feel alone. Do yourself a favor and check out her art in the links below.  Thanks for being you, Astrid, and for letting me share your story. Happy Warrior Wednesday!

 

Hello My name is Astrid and I am an IBD/ UC warrior.

Astridselfie

I was honoured when Jacklyn from FlareupHope asked to feature me as one of her Wednesday Warriors, I felt a sense of sisterhood with Jacklyn when we first bonded on IG. It was comforting to find others with IBD and sharing our stories make me feel less alone and scared.

What type of chronic illness/autoimmune disease (s) do you live with?
I was diagnosed with Mild to moderate Ulcerative Colitis

When was your diagnosis? How did you cope?
June 2013, The diagnostic was a relief as I needed to know how to proceed with a game plan.

What medications/treatments/surgeries/lifestyle changes have you gone through to manage your disease symptoms?
I have a very sensitive system to start and when I started taking Asacol, couple doses Salofolk following my doctor’s instructions, I felt more sick. I was only able to be on the medication for 2 weeks. My symptoms worsen and brought me to a full flare , that is when I went on a 5 weeks prednisone starting at 40mg to take the inflammation down.Because I didn’t want to rely on long term medication to maintain my everyday living, I worked really hard to find ways to manage my symptoms through diet change. I found the Paleo lifestyle a spring board to my healing regimen .

If you could tell yourself one thing looking back on your diagnosis, what would it be?
Don’t be afraid. This is a true test and will actually make you stronger . You are stronger than you think, you can heal your body, just listen to it.

What do you do to relieve stress?
Yoga, drawing and painting, walking in nature, bellydancing

You are an extremely talented artist. How long have you been creating? What inspires you?
Thank you for your compliment about my artistic abilities. I have loved creating as long as I could remember, silly putty was my favourite toy as a kid, I always had a pencil and paper with me, drawing was my thing, then I learned to paint in school. I am inspired by shapes, colours and texture from nature and love the uninhibited feeling in my children’s artwork.I love painting flowers.

Do you have a saying or quote or song that you turn to when you need to be uplifted?
This too shall pass

What keeps you hopeful?
Meeting more and more IBD/ AI warriors who is dedicated to healing the body through a holistic approach. My first GI told me that I would be 1 in a million if I can control my UC with diet alone. I really should buy more lottery.

What are some of your coping mechanisms for dealing with stress?
Focusing on Breathing, seems so simple but I often forget to take deep breathes until I do yoga or bellydancing. Putting things in perspective when a stressful situation arise. Is my world really going to crumble? Is my family going to be harmed? Am I going to live through it? I used to jump at other people’s requests or demands. I would put their needs or wants first. Now, I prioritize my life better, my health and family always come first.

Rain drops on roses and whiskers on kittens. ..what are some of your favorite things?
A perfectly sharpened black drawing pencil, epsom salt bentonite clay bath, coconut anything, lavender, the smell of my children’s hair (when it’s cleanish ), a juicy grass fed steak

Social media accounts /website?
http://www.healmeinthekitchen.com
www.astridfoxartanddesigns.blogspot.com
IG: @astridfox_art

Biggest change you’ve made since diagnosis? I am better at managing stress now and have found a positive outlook in life. I have learned to calm my fight or flight habit and start living life with different perspective.
I have learned to adapted to evolving healing eating plans as my body changes. I started with going grain-free right when I was on my short course of prednisone, , then I embraced the Paleo lifestyle, now I have fine tuned it with AIP ( Autoimmune Protocol ) with low FODMAP. I cook 90% o f my foods, spend 80% of my waking time in the kitchen. I read labels because my wellbeing depends on it. I almost never eat out but you can often spot me with my thermal flask of bone broth at restaurants while out with my family.

Best thing about having this disease?
Having to learn how to face my fears and dig deep into my darkest places, I have become the person I have always want to be, I have learned to live with less fear and without regrets. (I love this-J)

What have you accomplished that you are most proud of?
M y greatest accomplishment besides being a parent is building a business from ground up. 17 years ago, My husband and I took our passion, along with our inexperiences and decided to start our own business. When we opened our retail fashion boutique in 1998, apparently our neighbouring business ,at that time, thought that we ( our business) would only last a couple of months. That neighbouring business has since sold and change a couple of hands over and we are still the longest standing business with the same owner in the hood. Being entrepreneurs isn’t easy but we stood the test of time with our boutique/cafe, Global Atomic Designs and Black Echo Coffee, in the fashion district of downtown Vancouver, Canada. We having survived the economically ups and downs throughout the years and continue to push trend boundaries .We have earned international recognition in what we do like making into the NY Times 36 hours guide.

Astrid is a whole food advocate, recipe developer, ferment fanatic, mother, wife, artist and entrepreneur. When she is not playing kitchen scientist, she is most likely plotting her next painting move from her yoga mat. Carving time to fill her different hats can be challenging, but she finds joy in balancing a holistic lifestyle to support her continuing battle with Ulcerative Colitis. She owns a fashion boutique/ cafe www.globalatomic.com and www.blackechocoffee.com in downtown Vancouver, Canada with her husband.

You can also follow her creative art progress on http://instagram.com/astridfox_art

Hope Warrior: Alyssa

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Hope Warrior-@chronicallyliving

Posted on by flareuphope

Folks, I’d like you to meet Ellie. She’s a brave young girl who is facing any autoimmune diseases that keep her at home. She is currently unable to leave the house for long periods of time, even a trip to the doctor seems like a road trip across the country. But she doesn’t let this stop her from keeping a positive attitude and raising awareness for her diseases and many others.

Please read through Ellie’s story.

You can find her on instagram @chronicallyliving.

What type of chronic illness are you battling? I have Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Postural Orthostatic Tachycardia Syndrome (POTS) which is a form of Dsyautonomia and Irritable Bowel Sydrome(IBS). Together they produce huge variety of symptoms, some of the main being; fatigue that isn’t relieved by sleep or rest, chronic pain (joint and muscle, affecting all parts of the body), brain fog/cognitive impairment, nausea and other stomach problems, sleeping problems, constant sore throat and glands, feeling dizzy or faint, and many more.
 
What is the number one thing you’ve learned about yourself since your diagnosis?
Probably that I am able to deal with a lot more than I thought I could; I never expected to be in a situation like this but when you’re put in that situation you just learn to deal with it. 
When were you diagnosed?
I was diagnosed with ME/CFS in august of this year, and then with POTS and IBS in November. I have been suffering with symptoms since the very start of the year. 
What are your current medications/what lifestyle changes have you made to treat your illness?
In terms of medication: amitriptyline for sleep, pain and mood (currently reducing my dose), melatonin for sleep, domperidone for nausea (just about to switch to a new nausea med), fybogel for digestive problems, mebeverine for stomach cramps.tramadol and ibuprofen for pain,
Lifestyle changes: I’m mostly gluten free to help with my IBS, I try and follow a thing called pacing to make sure I don’t overdo my activity, and I take plenty of rest breaks during the day(Where i do nothing but lie there and listen to relaxing music)
How do you keep your mental health intact while dealing with the symptoms/changes of the disease?
I am on low dose antidepressant which possibly helps a bit, but mostly I try and focus on things I can enjoy and the little achievments every day. I’m also helped by being surrounded by loving, caring people who believe me and do their best to understand what I’m going through.
What do you struggle with most? What are you doing to overcome it?
I struggle the most with my fatigue, as it leaves me bedbound and unable to walk further than to my bathroom, and I sometimes can’t even manage that. To overcome it, I’m just having to do my best to keep my activity to a minimum to avid any further dips in energy level, and I hope that eventually I will be able to begin to build up my daily activity.
Any advice for newly diagnosed?
Try and keep your activity to a minimum-do half of what you are able to do! If you overdo it, your illness will only get worse and worse. And try and remember it isn’t necessarily a life sentence : people with ME, POTS and IBS do sometimes recover, and the majority of them experience periods of improvements, especially if you are young the chances of recovering are fairly good.
Rules to live by?
Do not overdo your activity. Love yourself and respect your limits. Don’t let other people tell you what you should and shouldn’t do. Don’t let people make you feel guilty for being ill. Always look for something positive in every day.
What does your perfect day look like?
At the moment, since I can’t leave the house I’d say a movie day with a few friends and maybe a bit of pampering time with face masks etc! 
Go to Snack when flaring:Probably a piece of dark chocolate  (I like 85%) because it doesn’t make me feel sick.
Favorite Author: Probably John Green! But I can’t read currently due to my illness.
Activity that lifts your spirits: Colouring!
Your philosophy/mantra that you’d like others to know about you: Make the best out of a bad situation.
What would you do with a million dollars? Give some to charity, some to my parents, buy myself loads of pyjamas!
Who do you admire? Everyone I see fighting their illnesses with such strength!
What is your mission? To raise awareness for invisible illnesses, especially ME/CFS.
Social media accounts? @chronicallyliving (instagram)
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#ShowMeTheMummy-Raise Awareness for IBD

Posted on by flareuphope

One of my favorite IBD advocates and members of my support team, Colitis Ninja started this awareness campaign and I am so excited to participate in it. What you do, is wrap yourself (I would suggest having someone help) up with toilet paper and hold up a sign stating how IBD has affected you, good and bad. You can read more about the actual campaign on her blog www.colitisninja.blogspot.com

I chose to do my photo while getting my infusion. One of my soul sisters was there visiting with me and she helped wrap the toilet paper so my IV didn’t get in the way and took the photos.

#Showmethemummy

IBD took a lot from me. It’s taken a lot of money, from hospital bills to prescriptions to vitamins to infusions to special food. It took my ability to eat anything I wanted any time I wanted. It made me buy diaper cream and prep. H.  It took my 26th birthday and made me spend it hooked up to IVs waiting for the all clear to get remicade. It took so much blood I had to get blood transfusions. It took my reliability and made me person who sometimes has to cancel plans because they need to be home close to their bathroom, or they are too exhausted to even try to leave the house. IBD took my emotions and threw them into a blender. It took my muscles, it lowered my blood pressure, lowered my iron levels, and stole my energy. It stole my ability to live a carefree life.Thanks to the infusions I receive every 8 weeks, along with prayer, diet changes and daily yoga, I am as close to remission as I am going to get. And even though I no longer am losing blood (thank God),I still have an autoimmune disease that has no cure. I still fight every day to have as much of a “normal” life as possible. The infusions come with their own side effects, and I experience a lot of hair loss, joint inflammation, and am more susceptible to other diseases and virus because my immune system is lowered.

It’s hard to look at the positive of being diagnosed with IBD. But it has made me stronger than I ever have been before. That saying where you never know how much strength you have until being strong is your only choice? That fully applies here. I know that because I can battle this disease, I can battle anything that comes my way.

Having IBD has also made me re-evaluate relationships in my life, and I can say with a full heart that all of my friendships and relationships are high quality, strong and true. I have some of the greatest friends, am closer with my family, and have found a person who will be by my side while I battle this for the rest of my life. I have weeded out the flakes, and I couldn’t be more grateful for that. I don’t have time or energy for someone who is only going to be around when they need me.

IBD has also given me a dedicated yoga practice. I have learned so much about the mind body connection, and I practice yoga every day to stay in tune with my body and to relieve stress. On days when I can’t seem to get anything right, and my balance is off I can come to my mat for practice and remember when I couldn’t stand up long enough to take a 5 minute shower, or wash my own hair. And I am so proud of myself for how far I’ve come.

This disease has also brought me closer to God. I had a relationship before, but I had never fully experienced the power of prayer. Now I can feel it, and I know, and I talk to God every day. It keeps me grounded and lets me know that there is a bigger plan than all of this. I know that I have a purpose, and that comforts me and guides me.

Another unexpected perk (?) of IBD is the amazing circle of friends on social media and support groups that I have found. I often refer to them as my imaginary friends. I’ve never met anyone in my #IBDfamily personally. But I don’t know how I would have gotten through this disease without their support or encouragement. I am so inspired an encouraged by them, and so grateful for having all of these kind souls as a part of my life. It gave me the idea to spark hope and start this blog. It’s lead me to connections with others that would have never been possible without this diagnosis.

And that brings me to the final thing that IBD has given me. A sense of gratitude. I make it a part of my life every day to note the things I am thankful for. It can be something as simple as a cup of coffee, or an email someone sent today, or a phone call with my dad. Or as big as an IBD sister in the hospital healing. I’m thankful every single day, good or bad. I’m appreciative of what I’ve been given, because I know first hand that it can be taken away at any moment.

IBD is not a joke. It’s not a poop disease. It’s not something to be taken lightly. I wouldn’t wish it on anyone, but I do wish it was more well-known and understood. Do you have IBD, or are you a caregiver for someone fighting the disease? Please share your experience using #showmethemummy. Raise awareness with us.

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