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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The Health Activist Writer’s Month Challenge: Day 2

​Every great writer has their own process! What’s the blogging process look like for you? Do you set aside time each week to write or do you wait until the inspiration hits? Do you finish a post in one night or use the week to perfect it? Do you edit your blogs or just hit publish? Whatever it is you do, it’s unique to you and we want to learn about it.

I have bad habits when it comes to blogging. When I first started I was posting Hope Warrior stories regularly on Wednesdays and then one other day of my own thoughts. Over the last year, the regular practice of sharing Hope Warriors has fizzled out. I am still more than willing to share inspirational stories, but people are busy. I send out interviews and they don’t get sent back. I don’t like to push people because I know what chronic life is like and I would rather have patients put themselves as a priority than stress about responding to my email. 

The lack of participation wasn’t the only contribution to my irregular posting. I also got married in June, so most of the last year and a half were spent planning (I LOVE PLANNING) and enjoying all of the festivities that come with getting married. Life has been good. 

I’ve been contacted to partner with more companies and bloggers lately, and that has pushed me to get back in to posting regular content. I’m still working on making updates to the blog and creating a regular posting schedule. I work full time so right now I just post whenever it is convenient. Currently I am on break at work, typing on the WordPress app on my phone. I’d like to get better about editing and learning more about creating cleaner, better posts, but for now getting back into writing is the goal, so I just hit Publish as soon as I can. Things might be a bit sloppy, but I’m writing again and hoping to support others. Right now, that’s what is important to me. 




Hope in the mental and physical

I had an appointment with my PCP last week. I’m blessed enough to have a doctor that has IBD and can relate to exactly what I’m going through. Not only does she run every test possible and tell me about all the most recent research, she knows that IBD is more than just the physical symptoms.
We talked A LOT friday about my labs (which were beautiful btw) and the mental aspects of this disease.
The thing about most autoimmune disease is that is so hard for a lot of people to completely understand is that there isn’t a cure. Even if we did find a cure for IBD, there’s other existential organs that may surface with problems, she told me. I’m not ever really going to really be out of the woods. But I’m in a pretty good spot. The view is just fine, the trees are beautiful. Remicade is working, and physically were in pretty good shape and just have to keep ahead of it and keep my care managed. I’m getting an MRI to check for bile duct cancer, just to make sure we’re in the clear.
Mentally though, our conversation went something like this:
You wake up everyday and you have a disease. Some days you feel great. Some days there’s this looming possibility that you are going to flare. And some days you are flaring. You just don’t know. There’s a weight on your shoulders as you follow all the rules to take care of yourself and find what keeps you feeling your best, and sometimes that weight is SO HEAVY you just want to put it down and let loose and relax and laugh but you’re scared of what could happen.
I did a quick twitter survey a few weeks ago to see how many doctors talk about the mental aspects of having an autoimmune disease. The results were slim to none. I told my doctor about this and she wasn’t surprised.  Most GI docs are going to focus and getting your physical symptoms managed. And that’s ok. It’s important. But you have to manage the other parts as well. So, how?
You have to figure out how you’re going to face this disease. Every single day. Its not leaving. I’ve seen so much depression, anxiety, sleep disorder, eating disorders, emotional breakdowns and much more out here and on social media resulting from this disease. If you’re one of those people, please know you aren’t alone. I’ve been there. I might even be going through that right now too. It’s a cycle.

All of this being said, my blog is going to turn more it’s focus more i
to sharing how I’m dealing with this in the mental health aspect of autoimmune disease.  Now, disclaimer,  I’m not a doctor. Please don’t take this as advice. But I am a patient.  And I do have ulcerative colitis. And I’m going to share my experience here.
Stay tuned for more to come!

The Paleo Partridge- Hope Warrior

Thanks for tuning in this Wednesday folks!

Have you met the Paleo Partridge? AKA Martine? She is an amazing lady who creates some delicious AIP recipes to help ease her IBD, and makes many other tastebuds happy as well! Martine battles Crohn’s Disease, another inflammatory bowel disease that can cause some nasty pain and symptoms. But she’s a warrior and fights it with a positive attitude and is super relatable in her posts. She’s also been very encouraging to me personally as I battled my last flare, and her support was/is so appreciated still.  Check out her website www.thepaleopartidge.com . You can also find her on instagram posting mouth watering dishes and gorgeous shots of her travels @the_paleo_partridge. Get to know the Paleo Partridge below! Thanks for answering some questions for me, Martine. You’re the best!

martine

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

I’m stubborn, doggedly so. This can be a weakness as much as it can be a strength, and I realize that while being obstinate about certain things-like your health-can bring great outcomes, it can also become a negative force. So it’s very much a process. (haha! Just ask my near and dear). I will say, though, I’m so proud of the determination I’ve exercised when it comes to my physical, mental and emotional wellbeing-I’ve made leaps and bounds progress and feel healthier than I ever have since my diagnosis of Crohn’s Disease.

When were you diagnosed?

I was diagnosed with Crohn’s Disease at 15. Goodness! It’s hard to believe it’s been a couple decades since that diagnosis.

What are you current medications/what lifestyle changes have you made to treat your IBD?

I currently take Humira 40 mg every two weeks as well as on-and-off Cipro and Cortifoam (a rectal steroid) for stubborn perianal Crohn’s. I started following a paleo lifestyle about eight months ago and implemented the autoimmune paleo (AIP) protocol four months ago with some unsuccessful attempts at reintroductions of eggs and nuts. So now I follow AIP for the long haul, and that is A-OK by me because I’m feeling fantastic.

For some people, medication is enough, but I’m not one of those people. On conventional treatments but without paleo and AIP, I struggle with abdominal pain and cramping, painful abscesses that drain causing fistulas, chronic anemia, zero energy, joint pain and horribly high inflammatory markers.

I’m so grateful to have found out about AIP because it eliminates all of those horrible symptoms. I don’t experience the constant problems with abscesses, and my blookwork has improved so much. I’m especially excited about consistently keeping my C-Reactie Protein (a sensitive inflammatory marker) in the normal range. I’m also ecstatic that my iron levels recently came back up on their own without the need of an infusion.

(THIS IS SO AWESOME TO HEAR!!)

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

Looking after my emotional and mental wellbeing has been the most challenging aspect of having a chronic illness. And even though I’ve been battling autoimmunity for so long I’ve only recently made progress in maturing my heart and mind.

About a year ago I found a Certified Hakomi Therapist (CHT) and worked very hard with her for several months in order to learn to love all of me, cranky colon included! I spent years loathing the part of my body affected by Crohn’s which means I spent those years actually hating a good part of me because I viewed the diseased part of my body as an invader, a betrayer and a monster. My therapist helped me learn to nurture and love my large intestine, which led to an incredible inner peace and calm as well as a feeling of wholeness, which had been missing since my diagnosis as a teenager.

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

I still struggle with keeping my emotions in check, specifically I fight against negative thought patterns and anxiety related to the daunting permanency of an autoimmune diagnosis and the trauma of bad (and sad) memories related to suffering with this disease.

In order to keep all of that in check and not slip back into my old habits of self-loathing, I maintain a regular practice of yoga and meditation. The movement of body and mind augmented by breath is tremendously therapeutic and calming; it helps me regain focus and not allow that antagonism between body and mind emerge again. I’m so grateful for my practice of yoga and meditation; the practice has changed my life and I don’t know where I’d be without it.

Any advice for the newly diagnosed?

Hold your head up high. Don’t let IBD or any disease rob you of your self-worth. You are an amazing human being! Be proactive. Educate yourself. Work with the medical professionals to find a treatment-conventional, alternative, or both- that works best for you.

Rules to live by?

Never let the disease define you, you are so much more than the diagnosis. Oh, and prioritize sleep-get your eight hours, kids! 🙂

Quote you turn to when you need to be uplifted:

Hmmmm….this often changes, but I usually write down an affirmation for the month on a sticky note and put it on my computer. This month’s affirmation: “Your dream doesn’t have an expiration date. Take a deep breath and try again.” I love that! It keeps me focused and hopeful.

Music/Song:

Anything by Vampire Weekend- I totally dig every single track on every one of their albums (yep, I’m a fan-girl). Also, can I just say Stephen Paige (formerly of Barenaked Ladies) has the most awesome voice ever, and I crush on him regularly.

Go to Snack when flaring:

Roasted chicken and well-cooked mashed carrots with a big dollop of coconut oil, yummy cozy, soothing, low-residue comfort food.

Activity that lifts your spirits:

Yoga, yoga, and yoga. Meditation. Also dancing to a good beat! 🙂

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

I like to remain curious and thoughtful about the world because if you’re bored, you’re boring. And that’s just not cool.

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 Diets

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Aside from going on the spiritual diet of “May Cause Miracles,” I took it one step further and I started the SCD diet yesterday. Or at least I thought I did. 

I bought the book “Recipes for the Specific Carbohydrate Diet.” (www.scdrecipe.com). Thinking I would give it a shot. So far, the steroid enemas are making little progress toward any remission status (and the side effects have been less than wonderful), so I figured looking at my diet (again) wouldn’t hurt. I’ve been gluten free since I was diagnosed and first went into remission by doing so. But once I stopped taking the canasa I immediately flared up again. That was in September and the bleeding hasn’t stopped since. I did an elimination diet and removed soy from my list of “legal” foods. Still no remission. Some days are better than others, but the urgency is still there and I still get nervous about accidents, and the good old friend blood shows up to say hello multiple times a day. 

Anyway, I figured trying something else wouldn’t hurt. So I bought this cookbook at a used book sale and began reading. Essentially, my understanding of the SCD diet was like the title said “grain-free, lactose free, sugar free solution.” Sugar wasn’t something I paid close attention to, and rice and corn were something that I still allowed on my previous diet.  I decided maybe eliminating those would help. So, I copied the list of legal and illegal foods in the cookbook and went to town meal planning. And I’ve stuck with those meals so far. 

However, it has come to my attention that I’m doing it wrong. After a little further research at breakingtheviciouscycle.info and scdlifestyle.com and thegapsdiet.com, I learned that I should have done an introduction phase with bone broth and such first. I also found out that aloe vera gel was illegal, and that really seems to help soothe my inflamed tum. Ugh. I was frustrated.

I took a minute, closed my computer, and changed my steroid induced attitude. I decided not to be so hard on myself.  I might not be doing exactly what the books say, but I’m making changes and trying. And if this doesn’t cure the flareup I’ll revisit and go to square one. If I get worse, I’ll go to eating just bone broth for 5 days if I have to. But I’m hoping to get better. Hoping that it helps stop the bleeding, and I get to feel satisfied and happy at the same time. Somehow, I’m going to beat this.  I might not be doing it by the books, but I’m doing it this way for myself. Every one of us is unique, every one of us has their own needs and lifestyles, and everyone of us is important enough to feel good every day of their life. You decide what works best for you, I decide what works for me, and we all end up healthy and happy. This is me believing in miracles, maybe we can work it into a Disney song someday. 

So, here’s the gist of what I’m doing. It’s a combo of Paleo, SCD, GAPS and what I know works for my body. 

What I’m having:

Fresh chicken, turkey, beef, fish, lamb, shellfish. 

Fresh spinach, onions, tomatoes and multiple other vegetables cooked really well or blended. 

Fresh and frozen fruits (without added sugars)

Natural cheeses (Cheddar, Colby, Havarti, Monterey Jack, Parmesan, Swiss) and Farmers Cheese if I can ever find it. 

Cooking oils

Nut flours, almonds, cashews, haelnuts, pecans and nut butters with no additives

Honey

Spices, 

Fruit Juices with no added sugars. 

 

What I’m not having:

Processed meats, potatoes, yams, canned fruit, grain of any kind including corn rice and soy, milk, mozzarella and ricotta, ice cream, chocolate (sigh), coffee and beans. Pretty much any form of processed anything. Trying to keep it as whole and fresh as possible. 

This morning I had a delicious green smoothie and my stomach didn’t bloat up like a 4 month along preggo. I ate leftover chicken with cheddar cheese and spinach (cooked really well). I drank a kombucha for afternoon snack and had mixed fruit of pineapple, strawberries and melon before that. This evening I ate boiled chicken with Greek spices and a cucumber and onion salad. It was delicious. I’m just about to settle in for some warm almond milk and banana sauteed with honey. This “dessert” might just satisfy my sweet tooth for the next few weeks. 

How long will I continue this? Hoping til at least my birthday. Or when symptoms go away. Whatever comes first. My birthday is May 19th. Also happens to be World IBD day. Ironic? Perhaps. Reason to celebrate extra hard? Absolutely. 

What dietary restrictions are you following? What have you had success/failure with?