Health Activist Writer’s Month Challenge- Day 14

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.

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Hope Warrior- NY Smile Movement

Browsing through #randomactofkindness (RAK) on instagram one day and I came across @nysmilemovement. A whole year of RAK’s documented. How cool. And what an impact they’re having! From leaving lottery tickets in grocery stores for strangers to find, to volunteering to pet sit, to giving away arcade tickets, smiles and hope in humanity are being shared everywhere, Join in the movement! Get to know a little more about Alex and a little more about Alec below, and then find @nysmilemovement on instagram and @ROCsmilemovement on twitter! And then go spark some hope with your own SmileMovement! Let me know what you do in the comments!

How did you come up with the idea for 365 days of Random Acts of Kindness?

Earlier this year I saw a couple of inspiring posts throughout the week on social media and spent some time pondering the effects that such kind deeds can have on the world…I thought up my first idea soon after and decided to attach quarters, with kind notes attached, to vending machines at a Tops market near my house.  The joy I got after seeing the “free candy recipients” post a picture of their combined smile to my feed was so contagious I couldn’t stop!  I then made a personal goal to perform the 365 days of Random Acts of Kindness and the rest is history!  

What project/activity has impacted you the most so far?

I can’t choose just one so I’ll give you my 3 personal favorites! 

1) I got contacted by a mother who really wanted to give her son WWE tickets for his birthday.  I had just sold the tickets however, but had an opportunity to win another pair that night if I somehow won another 16 person competition at the nearby bar that night.  I ended up winning the whole thing and surprised the mother, and her son, by giving him the tickets for free on his birthday! 🙂 Seeing his smile was absolutely priceless.     

2) Shoveling out cars on my street for 2 hours after a snow storm so my random neighbors could get out easily in the morning 🙂 Actually putting in all that sweat and effort for others felt great to know I saved each of them that task. 

3) Personally Messaging all 700+ of my followers has been amazing so far.  Spending the time to view most/all of the pictures on each account and tailor each message to every person has brightened dozens of people’s days.  I approached this with the mindset that “You never know quite how rough someone’s day/week/month could be and how much that person could benefit from the tiniest thoughtful gesture of kindness to show you’re thinking of them”.  I’ve connected with 230/700 people so far that I’d normally never interact with otherwise.  Of the people that responded, SO many of them said that I had made their day and that “you have no idea how badly I needed this…thank you”.  Over and over I’ve seen that response this past week and it just reemphasizes how important such a small gesture can truly be.  On top of that, I’ve gotten to know so many of my “followers” that I’ve never talked to before and have found many things we share in common after lengthy convos.  It. Has. Been. Great!! Can’t wait to conquer the next 2/3 :] 

Rules to live by?

I grew up with the golden rule and have been stickin’ to it ever since (thanks Mom haha).  Treat others the way you’d like to be treated.  It’s that simple! 

Quote you turn to when you need to be uplifted:

“No act of kindness, however small, is ever wasted”. 

Music/Song:

“Don’t worry, be happy” 🙂 Also, Funk. Funk warms the soul and gets the people movin’! haha

Activity that lifts your spirits:

Random acts of kindness ALWAYS lift my spirits whenever I’m having a crummy day.  Putting a smile on the face of a random person, or even a friend/family member, is priceless.

Your philosophy/mantra that you’d like others to know about you.

For so many years of my life I never truly understood the power, and meaning, of giving with the intention of getting nothing in return.  Now, that is how I live my life.  Many of the RAOK I do, I don’t even get to see the reaction of the people who end up receiving them.  I just try to do everything with strong faith that they’ll reach a person who needs it, (hopefully) appreciates it, and (hopefully) pays it forward.  I believe in “creating waves”.  The power of the ripple effect that follows from a single good deed can be tremendous!  The best part?  We all have that power!!

What would you do with a million dollars?

I’d travel for awhile and then invest a big chunk into my big RAOK career idea that will be very well spent towards inspiring & uplifting the country if it all pans out! To be continued… 🙂


Who do you admire?

I admire anyone and everyone in this world that lives their life with undeniable passion working towards their dreams.  Anytime I see someone like that I admire their drive and it reignites the fire in me to keep doing the same!

What is your mission?

A huge goal of mine is to inspire people across the country to start their own “SmileMovements” in every state.  I want kindness to become such a common gesture that it’s rare to see someone not smiling!!

My mission is to make my stamp on this world by doing everything in my power to make it a happier place to live.  One small act at a time.  One small city at a time.  One state at a time.  One Country at a time.  Bit by bit I will be spreading kindness and inspiring people to pay it forward as long as I live. 

 

Mangia Paleo-Hope Warrior

On Wednesdays we meet warriors. This idea of sparking a little more hope in the world isn’t just something I can always find from within myself. I’ve found that the spark grows more when there are others out there you can draw inspiration from, relate to, who provide a sense of humor, a little support and a whole lot of light when you’re reaching for the stars in the darkness.
Laura and I were diagnosed with ulcerative colitis close to the same time, and her Instagram (@mangiapaleo – follow her!) account displaying how she was using food as medicine to fight her disease into remission was so reassuring to me. Plus she displays the best sense of humor and doesn’t hide about the difficulties and frustrations the disease can cause. When we could laugh about poop together, even through cell phone screens and laptops hundreds of miles apart, I knew I had found an IBD (inflammatory bowel disease) family member. I wouldn’t have gotten through my hospital stay with a good attitude and faced recovery without having her cheers and healing vibes.
So meet Laura, a true IBD Warrior. She has some great recipes and info about ulcerative colitis on her blog as well!

@mangiapaleo

What’s the number one thing you’ve learned about yourself since your diagnosis?

I’ve learned that I am more resilient than I would have ever known. It also surprised me that I took a negative diagnosis and turned it into something that, hopefully, instills inspiration and strength in others.

I think you definitely do that with all of your efforts. When were you diagnosed?
March 2013

What are your current medications/what lifestyle changes have you made to treat your IBD?
Immediately after my diagnosis I began the paleo diet lifestyle. My diet excludes grain, gluten, dairy, legumes, sugar and anything processed. I am currently taking a maintenance drug but do not believe it contributes positively to my health-or at all. *shrug* My diagnosis was just last spring, so I’m still experimenting with what I can and can’t eat or do with my ulcerative colitis.

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

A huge part of why I stay strong is my accountability from my blog. I feel a sense of purpose when I post new recipes or health information. Upon being diagnosed I also believe I was given an obligation to raise awareness and help others in their journey. Being an advocate for IBD is a reminder that I am in control of my disease and that my diagnosis brought me to a healthier way of living.

What do you struggle with the most? What are you doing to overcome it?

My independence is something I really value, but I can get lonely occassionally. My friends and famiy have been an amazing support, but sometimes you just want someone to surprise-pack a healthy lunch for your or ask how your day was and give you a hug when you come home.
Having IBD is one of those diseases where it is easy to seclude yourself and believe that no one understands what you are going through. But I have overcome that by speaking out about it.
Since I have been very open, honest and candid about my disease I have met some amazing people through my journey. You’d be surprised how many people/acquaintances in your life have Crohn’s an colitis!

Any advice for the newly diagnosed?

I have 3 pieces of advice:
Even though you may not feel like it, you are in control. You own your body.
Do your research on health and nutrition.
Talk about it. Raise awareness and help the average person better understand our illness. It’s a great way to build a network of support, too.

Rules to live by?
Always bite your tongue when you hear someone without IBD tell you they have a stomach ache. Oh, and eat clean and get plenty of sleep!

Quote you turn to when you need to be uplifted:
“Every day may not be goo, but there is something good in every day.”

Love it! Musice/Song: “Three Little Birds”- Bob Marley
I also have a short Spotify playlist called “IBD Flare.”

Go to snack when flaring: Bone broth and roasted carrots with turmeric and ginger.

Activity that lifts your spirits: Cooking, CrossFit, and doing anything outside in beautiful weather.

Your philosophy/mantra that you’d like others to know about you:
I always keep my sense of humor.

Hope in My Body

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For the May Cause Miracles that I am reading, day 18’s affirmation is I am thankful for my body. This was a challenge for me today.

Today marks one year since I have been diagnosed with ulcerative colitis. April 17th, 2013. And I’m worse than I have ever been. I’ve lost 7 pounds in the past few days. The pain is incredible. Eating is ridiculous. The steroid enemas are not working. I’m going to the bathroom 10-20 times a day. I had to leave work today after almost having an accident.

I spoke with my gastro doctor this morning. She said it’s time. We’ve tried everything to avoid the oral steroids. We tried the lialda, the canasa, the uceris, the steroid enemas and we tried it all again. I went gluten free, soy free, and tried to stay as stress free as possible. But is it hasn’t been enough. Something inside my body just isn’t connecting with the healthy me I want to be. So today, I started Prednisone. And I’m hoping that it works. This was not an easy decision. When I got the phone call this morning that the prescription was being filled, this needs to get under control and this is the next step, I was very upset. I immediately started crying, outside in the driveway while letting my dog out. I felt so defeated. And scared. I’ve worked so hard to get my hormones under control, and I’m in a good spot emotionally, and this could totally screw it up. I tried so hard to see some light, and I just couldn’t.

So I called my dad. I tried to keep it together but as soon as I told him I needed a pep talk I just started crying again. And we talked for a while. I calmed down, and he reminded me how strong I am and how I’ll be able to get through it. I’ve tried everything. And yet I’m still determined. Maybe I won’t get the side effects. If I do, I’ll be aware of it. I’ll know that I’m being crazy because the drugs are making me that way. One step at a time. One foot in front of the other. I really don’t care about the moonface or the weight gain or any of the temporary stuff. It’s the emotional theatrics that I’m scared of. So after I left work, I went and picked up the prescription. I cried again. All the way home. And then I got home and went to the bathroom and keeled over in pain. And the decision was made.

This is supposed to be such a happy time. My boyfriend and I are buying a house. I’m doing really well at my job. I have a great life. Except for this damn disease. And I’m not going to have that be a reason not to keep enjoying my life. I want to be out there.

And that’s the problem. I haven’t been able to enjoy myself the last few weeks. And I told myself that once the disease starts controlling my life and I can’t control it, I’ll go to the oral steroids. It’s time. I want to be able to hang out with my friends, happily. To go on road trips. To enjoy my summer. To work on our new house. To take my dog for walks. To do yoga. To be a good girlfriend, daughter, friend, person to myself. And I can’t do this when I’m stuck in the bathroom. Or laying on the couch. Or sleeping. I need to heal. And if this is what I have to do to get there, then I’m going to do it.

So, today I am thankful for my body. My body is a monster But it’s not an evil monster. It’s so strong, it kicks it’s own ass. It’s a ball of light that is meant to be shared with the world. It’s a vessel for healing, for sharing hope. For inspiring others. For living and loving and laughing and feeling the joys of life from the tips of my toes to the roots of my ever changing hair. It’s not for hiding away inside. It’s not for dwelling in pain. It’s not made to feel sorry for, not to deprive of joy. It’s made to nourish. To provide. To excel.  My body provides a haven for my soul. It allows me to love, to feel, to cherish. It gives me opportunities for change. It challenges me. It is beautiful. And it deserves to be loved.

And love is what it’s going to get. So, today, one year after diagnosis. I begin the drug that I tried for the entire year to avoid. I talked to my boyfriend about it when he came home. I get concerned some days that maybe this is too much for him. That maybe this is going to be the straw that breaks the camels back. And then he says “Anytime I start to get bothered by it, I think about how its 100,000 times worse for you, and that’s enough for me to deal with it. You’re so strong. You need to take care of you. Don’t worry about anything else.”

And then I realize that these are the thoughts of my ego. It tries to convince me that I’m not worthy of love, that I’m too sick, too many problems, to much to handle. That I’m a hot mess. Well, ego. I’ve got news for you. Your time for making me feel unworthy and sick is over. This year, this year I’m going into remission. The steroids are going to work. And the Paleo diet is going to keep me there (I’ll touch on this later). I have the ability to heal. This isn’t saying it’s going to be easy. It might not be. But it’s time

I’m not going to stop fighting for my health and happiness. I have hope in my body and my ability to heal.

Hope In the Battle

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Yesterday started beautifully. I woke up with energy, took my yoga mat out the back porch and spent a good hour flowing and connecting. I had plans to get some grocery shopping done for the SCD diet and do some packing/purging of items in preparation of the move, as well as to get out and enjoy the beautiful weather. I was happy, blissful, and feeling like the medications were finally working. Around one in the afternoon I lost my energy, and the evening ended/proceeded with the worst episode I’ve gone through since my diagnosis.

This is the thing with ulcerative colitis. It challenges you. It wants to beat you.

It says “Try to keep that same blissful feeling,” and laughs while inside the pain is so intense you’re whispering profanities to yourself and squeezing your wrist just to bear through another cramp.

It dares you to not be frustrated when you have to cancel your shopping trip with friends because you haven’t been able to go more than a couple hours without an urgent bathroom trip.

It taunts you to feel energized and get out of bed in the morning when you were up every few hours the night before, rushing to make it to the restroom without waking anyone else up.

It tries to steal your confidence when you look in the mirror and see this gaunt, ghostly figure with dark circles looking back at you. It laughs when you step on the scale to discover you lost another 2 pounds overnight.

It smiles when you still have a terrible taste in your mouth after brushing your teeth and sees the tears in the corners of your eyes.

It wants you to feel the shame burn on your face when you stand in line at the pharmacy with your preparation H wipes and sensitive toilet paper and the clerk tries not to make eye contact.

It may try, but it doesn’t have to win.

There’s always another way to look at things. I’ve felt the worst that I have in a very long time over the last 24 hours. My bathroom trips are in the 12-17 times per day. Everything hurts. I shed a couple of tears of frustration this morning.  That doesn’t mean I’m weak. It doesn’t mean I’m broken. I’m battling. I’m still here. I can fight back. Here are some of my strategies for the war tactics of UC.

The pain is temporary. When it seems overbearing, I try to distract myself with other thoughts. Read a book. Set some goals. Count the tiles on the floor. Make plans for the new house. Hum a song. Think of something better than this moment.

Good friends understand when you have to cancel plans. Start planning another trip. Or a movie session. Or just text. Whatever I can manage.

Don’t make it the disease’s choice whether I sleep more or get up. It’s my choice. It’s not “the ulcerative colitis” that kept me in bed. It’s that I was tired and needed more sleep. Or I’m taking it easy today because I’m exhausted. My choice. Don’t give power to the disease.

Forgive myself for having the ugly thought. It’s not true and it’s not helping anyone to feel sorry for yourself. Yes, this sucks. But I have the power to choose how I’m going to feel about it. Put on a little makeup, and a smile, and you’re good to go. Maybe do a face mask or paint your nails. Show yourself some love. Don’t let this steal your joy. What do you really want today? How can you make that happen?

If the tears come, let them. This is hard stuff. You’re going to be sad. You’re going to be frustrated. Things aren’t going to go your way. Life is not as you knew it before. But you have a choice. You can react in a manner that makes it better, or you can make yourself feel worse. Let the tears fall, then figure out what you’re going to do next and move on.

We’re taught not to talk about our bowels or anything that comes out of them. It can be embarrassing buying preparation H and soothing wipes and keeping it all in a cupboard with your enemas and rectal suppositories next to your boyfriends cologne. Those shameful terms are ones that no one wants to hear or have talked about. But talk about it. Make jokes if it makes it easier. If you keep it to yourself, the disease will stay inside you. The more awareness the better. One of my favorite quotes from Jillian Michaels “Get comfortable with being uncomfortable.” You never know, something you say might inspire more research, might reach someone who is alone in this disease, or may bring some insight to someone who has no idea what an inflammatory bowel disease does.

Ulcerative Colitis can try to steal my dignity, my confidence, my strength, and it can try to do a lot of things to break me down. But it won’t win. I have hope. I am strong and I am determined to beat this.

I don’t know what brought on the extreme episode. Possibly the piece of Guyere cheese. It was on the SCD safe list, but the extreme pain started after that. I’ve decided to add dairy to my list of restrictions and move forward. I just ate some homemade chicken broth, said a prayer, and am waiting to see how that effects me. Other than that, it’s just been water today.

One foot in front of the other and you’ll keep moving forward.