Hope Warrior-Callie

Featured by flareuphope

Have you ever come across an Instagram post and just thought, “YES! This is my language! Finally someone is speaking it.” Well, Callie at @riverandquill is this person for me. I found myself nodding my head, smiling, laughing, tearing up and saying OH MY GOSH YES to so many of her interview responses. She has an amazing talent for writing, and I think many of you will find her journey with chronic illness, hope, and grief very relatable. Grab a cup of tea or coffee and settle in to read my interview with Callie to below. Make sure check out her social media and then blog here as she writes about her journey with health and healing. Thank you for sharing your story, and filling others with hope, Callie!

What chronic condition or illness are you currently battling?

I have Interstitial Cystitis. It is basically a chronic bladder infection, but it is not due to bacteria, just a neglectful bladder lining.

What do you remember most about the day you were diagnosed? Looking back, if you could tell yourself one thing about the diagnosis you were about to receive, what would it be?

The day of diagnosis is one of two of the most terrible days of my life. I walked into a room with what looked like torture device chairs, which in the end did live up to my predictions, and I sat through the most painful procedure of my life. I peed blood for days afterwards, but I had a diagnosis. I would take having another baby over that any day. The hardest part was that no-one could offer any encouragement. Immediately after the procedure, a nurse walked in with a death diet, and by that I mean, the most depressing diet I have ever encountered. The IC Diet is terrible, and depressing, and it was the cherry on top of a devastating day. Stretch someone’s bladder until it bleeds, then hand them a brochure with “no” signs through coffee, beer, and chocolate. Yeah, I was ready to die. I drove myself home, because I had no idea the procedure would be so painful, and collapsed in my husbands arms when I got home. I hesitated to walk through the door though. I wanted him and needed him, but admitting that I was forever different, forever the girl with the chronic disease; it just felt so foreign and I didn’t want to bring this alien back into my home. It’s hard to describe to anyone who hasn’t gone through it, but suddenly you are someone else, and it’s extremely hard to deal with.

If I could have a little conversation with former me, I would validate the fear and the sadness. Grief is most definitely something we need to go through when experiencing a chronic disease diagnosis, but I would also give loads and heaps and oodles of hope. I would tell myself that although I now have a chronic disease, it does not change the person underneath all the pain. She is still there. She will cower in a corner for a while, but she will emerge. I would tell her that she needed to take some time to grieve and some time to believe, some time to do things that brought joy, and time to just relax. I would tell her she is enough, that she is loved, and that this isn’t the end.

(Note from Jacklyn: OH MY GOSH YES. All of this. on repeat)

What medications/treatments/surgeries/lifestyle changes have you gone through to manage your disease symptoms?

I have been to more doctors in the past couple of years than I would like to admit to. I tried bladder installations at the very beginning. They work for some, but they didn’t work for me. I believe now that this is because my IC is hormonally driven. I was breastfeeding my daughter at the time and my estrogen and testosterone levels were both very low. No amount of medication was going to help me until my hormones balanced. I didn’t know any of this until I started seeing a functional doctor last fall. A functional doctor is an actual MD who not only looks at your symptoms, but looks into how your body is running in general in order to try to determine areas that it needs some help. For example, my CoQ10 levels were the lowest he has ever seen in a patient, so I take that as a supplement now. CoQ10 does a great many things, and is present in all of your cells. It gives you energy, and keeping it in check keeps your cardiovascular system in check as well, so yeah, glad I figured that one out. The most helpful supplement/therapy so far has been testosterone replacement. Who knew that girls needed this, right?! Apparently, many women’s natural testosterone levels drop after having babies, and mine was low and not coming up with regular exercise or a healthy diet, so we are supplementing and it is helping GREATLY! I stopped taking it for a week, just because I am a momma of three, and hey, life is busy, and I hadn’t picked up the new bottle. I flared for a week, messed up my period, it was crazy. Other therapies and meds that have helped me include Elmiron, but I order mine through a pharmacy in California that is hundreds of dollars cheaper (most people pay $800 a month for this medication – it’s insane and wrong and a whole other blog post). I also take Vitamin D, Desert Harvest Aloe Vera, Cystoprotek, Magnesium, and a very strong probiotic. If our gut micro biome is off it can throw our entire body, and in my case, my bladder. Physical therapy is another amazing treatment that I have used to help my symptoms. It’s pelvic floor physical therapy, which I write about in my manuscript, and is quite the experience. Who knew there were PT’s for vagina’s, right? Now that I have totally thrown you, I will just continue like I have said nothing about vaginas or vagina therapy. Relaxation and stress relief have been huge to my recovery, as well as believing in healing. I just flared for the first time in months and even after my months of feeling good it was hard to believe I would get back to where I was, but I am getting there. I know how hard this is to believe, but it is truly the first step to getting things under control. I use essential oils, CBD, and other natural products to manage stress, but I also allow myself time to do things that I love: read, write, play, walk, whatever!

I really love your writing on your blog and Instagram posts, you have great voice. What inspired you to start writing about your journey with chronic illness?

Thank-you!!! Chronic Illness isn’t like getting slapped with a strep throat diagnosis. It’s forever, or at least it feels like it is going to be. The medical community lacks in their social-emotional support for patients, and this is something I felt that I had a responsibility to fill in for. I’m not sure in what capacity, but I just knew I had to start talking. The suicide rate in those with IC is 11%, whereas the national average is 3%. Those mathematicians out there will note that this is triple, almost quadruple the national average. I had suicidal ideations repeatedly after my diagnosis and up to a year afterwards. I was a happy, well-adjusted person before. The pain brings you to this panic filled place and it threatens to keep you there forever. I knew how much it meant when people gave me encouragement that things would not always be so bleak and that’s what motivated me to start this blog. I wanted to be the words that maybe didn’t bring someone completely out of despair, because the grieving is legit and needed, but I wanted to shine a little light down to them and at least get them on the first step toward believing they could get their pain under control. Doctors don’t do this. I should say, most don’t. I have an amazing one now who absolutely does, but you can’t just tell someone they have a disease, give them a brochure and then walk away. They need more. That’s where I hope my blog can come in for some people. I want to lead them to a healthy place, through encouragement and through resources. No-one should ever feel as alone as many do with chronic disease. I guess, mostly I just want them to know that I’m there with them.

What are some of your other favorite things to do?

(favorite books, music, podcasts, hobbies, activities etc)

I have always loved to write. It is what helped me out of the depression brought on by IC. So, I suppose my blog is as much a help to others as it is to me. I also love to spend time with my family, going on adventures, which mainly involves walks, or playgrounds, but hey, you can find adventure anywhere, right?! I used to knit before I had tiny people climbing on me all the time, but maybe I’ll do that again some day. 🙂 I also love to read. If I could lose myself in a book every day and my kids would manage to stay alive, I would totally do it. I like to think that I hike. In reality I have gone on a trail once in the past few years, but, since this is my interview, I think I can just go ahead and say I hike. I’m a hiker.

What is something you have accomplished that you are most proud of?

I wrote a manuscript. It may be terrible, but I did it. I am actually in throws of trying to find an agent, and that is a rough business, but in the end, published or unpublished, I did something I have always wanted to do, so, yeah, I’m pretty proud of that.

(note from J: THAT IS AMAZING. Congratulations!)

Who inspires you?

Others with chronic disease. I see them going out and living their lives, despite their pain and their fear and I just admire them so much. As far as celebrity inspiration goes, I would have to say Anne Lamott. Her words always reach me. It’s like they were written specifically for whatever place I am in, when I’m in it. I’m also inspired by the beauty that surrounds me every day: my daughters giggle, flowers, the breeze. It’s just inspiring to be alive and to be able to experience any of it.

What are some of your coping mechanisms for dealing with stress?

Writing is huge! Also just going outside and getting away from my thoughts as much as I can. Calling someone and crying until the world feels less scary helps too. Also, lathering myself in essential oils is a new one. Plus I smell good, so there’s that.

What has been the best thing that has happened so far that would not have happened if you did not have your chronic illness?

This has been the easiest question to answer, by far, no question. Meeting my IC Sisters has been the best thing to happen to me. About six months into my disease, another nursing mom from the ICNetwork support forum emailed me. The support forum was terrible for me. Too many people complaining and just in it, and I was sure I would never get better based on the state of all of them. BUT, my friend Lucy made it worth being on there, as she and I connected and she then connected me to a group of 5/6 women who all have IC and all within 10 years of my own age. Some of them were in remission, some of them were as miserable as myself, but we all had been through it. They were such an encouragement to me, and continue to be, daily. We talk via Facebook messenger basically nonstop. The friendship we share is one that can only be experienced when you have a disease and they are the dearest of dear to me. I joke that if we ever met in person we will probably just cry for a solid hour, taking pee breaks every few minutes.

What keeps you hopeful?

I was in remission for three months, and I am pretty sure I know how to manage this devil of a bladder of mine now. I have hope because others have conquered, and I have too. Life is still in front of me, IC or not. It’s no longer my defining feature or lead role. It’s just a member of the chorus. Hardly even know it’s there most of the time.

Do you have a favorite saying, quote, mantra or song that you turn to when you need to flip your mood around?

Well, I suppose that would be smart, but not really. I need one. I usually just cry and loathe and then find a Bible verse, pray, and try to have a really successful internal pep talk. Sometimes it works. Sometimes it doesn’t. I’ll be working on this one.

Okay, time for rapid fire this or that:

Chocolate or Vanilla? Chocolate but damn you IC, now I have to do Vanilla

Coffee or tea? Always coffee, but again, IC insists it only be a cup or two. I used to drink pots

Hot or cold? Hot

Sweet or sour? Sweet

Dog or cat? Dog (but I love my cats!!!)

Running or walking? Walking. Duh. Walking.

Road trip vacation or resort vacation? road trip

Day at the beach or day hiking in the woods? Beach

Android or iPhone? iPhone

Sunshine or rainy day? Sunshine

Dinner out at a restaurant or a nice home cooked meal? Out

Doing the dishes or doing laundry? dishes

Comedy or horror? Comedy

Fiction or nonfiction? impossible – both

Cake or pie? pie

Sunrise or sunset? sunset

Final question:

You’re in the waiting room about to leave after a follow up visit with your doctor. Someone else is in the waiting room and they were just diagnosed with a chronic disease. They catch your eye and then ask you “How do I get through this?”

What do you say?

Believe you can

How to Enjoy Your Wedding Day When You Have A Chronic Illness

Posted on June 4, 2017June 2, 2017 by flareuphope

I’ve received a lot of requests for this post over the last year, and figured our first anniversary would be a good time to answer those questions. Here are my top 5 tips for enjoying your wedding day despite a chronic illness.

Make time for yourself.
Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography

The morning of our wedding was absolutely gorgeous. I spent some time alone in the morning before everyone arrived at the house doing yoga, sipping on a cup of coffee and writing a letter to my soon to be husband. (Instead of sand or candles, we decided to write each other a letter and to put it in a box together to open on our first anniversary. Every anniversary after we will write another letter and open the one from the year before.) I watched the sun rise over the river, wrote in my journal a bit and basically gave myself a few moments to just be.

Eaton Rapids Wedding Photography - Millers Dairy Farm - Phil Black Photography — Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography

I knew that if this short hour to myself would likely be my only alone time, and I savored those moments and gave my body some well deserved self care and relaxation. It really helped me get present for the rest of the day and to make sure I was focusing on what really mattered. This step is important throughout the wedding planning process also. It can be so challenging not to get wrapped up in the pinterest boards and the details and trying to make everyone else happy that you forget about yourself and to pay attention to what you need. When you’re fighting against your body, you have to listen to what it says while it is whispering instead of waiting until it is screaming at you to stop and make a change. Make it a habit to make time for yourself.

2. Surround yourself with people who lift you up.

Ain’t nobody got time for negativity. I’m so blessed to have the most amazing tribe of girlfriends who all bring their own unique character traits to the table. My girls balanced me, kept me grounded, supported me and kept me smiling. My husband’s guys kept me laughing and everyone was troupers as it started to rain moments before we were about to walk down the aisle.

My family that day was amazing. My dad particularly went above and beyond to make sure everything was as it should be and that everyone was having a great time. We were overwhelmed by the love and generosity by every guest and were surrounded by love all day.

I know that not everyone has this type of environment or support systems. If this is the case, consider who you really want to be surrounded with when you make the biggest promise of your life. What kind of energy do you want to bring to your day? Physical energy is flaky with autoimmune disease, and I find that when I’m surrounded by people who are at a lower vibration (or who don’t enjoy life), I lose zest.

Invite the people who bring light in your life. Make them a part of it. Don’t feel guilty if you don’t invite your coworkers dog-sitter or your mom’s cousin’s kids that you haven’t met, ever. This is about you and your husband and who you love, and who loves you best. You won’t regret surrounding yourself with awesome people, you might regret inviting Debbie Downer.

3. Put someone else in charge on the day of.

Whether you hire someone, loop in a friend or family member, or get the DJ to take over, get someone to take the lead on the big day.

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My best friend from high school was my hostess with the mostess, and even while pregnant she took charge and smiled the whole time. My cousins were in charge of pouring champagne, and my stepsister served drinks with the help of her friend. My in-laws were in charge of clean up the next day. “People want to help you, and you should let them,” was the persistent advice of my future mother in law.

This was probably the hardest advice that I had to take. I’m big on “No thanks, I’m good,” and can handle everything on my own. I know I can handle it, but sometimes you just shouldn’t have to. Particularly on days like today where the celebration is about you. Pass the torch and let someone else take over making sure the centerpieces are all set and that the guys have their boutonnieres and to make the decision on whether to continue the ceremony in the rain or take an hour to move everyone inside. This is your time to enjoy all the things you created, not to think or stress.

4. Whoooosahhhhhh

Breathe. And be grateful.

Not everything is going to go exactly as you planned.

And those moments are the best ones. Let go of expectation, and just enjoy every moment for what it’s worth. We had the most relaxing morning at my home getting ready, and all of a sudden I was supposed to meet my future husband for our first look in 15 minutes and my makeup wasn’t done and I wasn’t dressed and we had taken zero bridal party pictures and everyone was asking if I was okay. I felt myself rushing and getting tied up in freaking out for a minute and then took a breath and remembered that the show can’t start without us. We’ll have plenty of opportunities for pictures, for everything little. We’re getting married today. I’m alive. Nothing else really matters. So I took a deep breath, let it go, and went back to enjoying myself.

Things are going to happen that you don’t expect or maybe didn’t want to happen. But in the end, these moments will be the best and you’ll look back on them again and again throughout the years.

You might cut your foot open 5 minutes after wearing your shoes and have to change into flip flops right before you walk down the aisle, but at least you’re comfortable.

It might be sunny until the moment you have to walk down the aisle and then it may decide to rain. But you’ll get the greatest picture with your dad in an umbrella.

You might not get all of the pinterest-worthy golden hour photos you anticipated, but you’ll have some hilarious moments with the bridal party as you are stuck in an old ice cream parlor.

The best man might swear in his speech and it may go on for a while, but you will laugh and it will be one of your favorite memories and something that will be talked about forever.

The flower girl and ring bearer might not want to walk down the aisle. But they are absolutely adorable so it doesn’t matter.

The dog might follow you everywhere all night and even interrupt the daddy-daughter dance, but you’d rather have him there with you than not at all.

Those unplanned, unintentional moments are the best.

5. Pay attention to your hands.

Weird advice, I know, but hear me out.

You will look at your hands every day of the rest of your life. Likely they’ll now have a ring on the left hand to help you remember this day, but if you focus on your hands, you’ll remember more of the moments.

With chronic illness, our hands often go through a lot. They are constantly being washed to prevent infection, sometimes they are being poked with an IV for medications, and sometimes they are squeezing or clenching in pain. Our hands hold a lot of memories. Having good ones when you have to go through something tough can make it a little easier. Here are some of my favorite memories:

I think about the mimosa I held and the piece of turkey my future cousin-in law handed me while my makeup was getting done.

My hand tapped on my future husband’s shoulder when we met for our first look.

My hand gripped by bouquet that was made by my cousin, wrapped with my great grandmothers brooch she wore to her wedding. My fingers touched my necklace that was made from diamonds from my other great grandmothers ring.

My hand linked through my dad’s arm as he walked me down the aisle.

My hands met my husbands as we stood in rain, looked into each others eyes and stated our vows.

My hands were lifted as we were married and ran together down the aisle out of the rain.

My hands wrapped around my friends and family as we laughed and took pictures.

My hand was covered with my husbands as we cut our cake.

My hand held a glass of champagne as we said cheers, and held the hands of others as we prayed.

My hands wiped away tears as both sets of my grandparents danced as they shared the dance for the “longest married couple.”

My hands held more hands as we all danced and laughed and danced.

And most importantly, my hands were held, by my best friend, my forever partner in life

and were promised they’d always have another to hold.

Gratitude

Posted on November 24, 2016November 24, 2016 by flareuphope

My husband and I are taking off for Thanksgiving weekend and exploring the Upper Peninsula. Our car is loaded up with snacks, snowpants and blankets. The dog is curled up next to me in the passenger seat and I’ve got a thermos of coffee still hot from 6 am.

I have so much to be thankful for this year, and in the spirt of Thanksgiving I’ve spent the last month trying to make myself more aware of those things. It is so easy to get wrapped up in what isn’t going as I had planned and to forget about what I’ve been blessed with.

I’m taking this weekend away from social media, away from blogging and away from it all. Disconnecting in order to reconnect with what is truly important.

I hope you all have a wonderful Thanksgiving holiday and that it reminds you to stop for a moment. Stop worrying, rushing, stressing, wasting and just be in the moment. Be with the people you love, in spirit or in person. Look around you. Notice the smells, the sounds, the temperature . There is good stuff to find, I promise. The holidays can bring out some of the worst in us sometimes, but try not to let the pressure the season brings steal your joy. Stay focused on the good. Enjoy yourself. With chronic illness we don’t always know what’s going to come next, and life sure isn’t easy. Choose to make the most of it. Choose to be grateful. Choose to find hope in those stressful moments.

Have a wonderful weekend. Thanks for being a part of this community

Health Activist Writer’s Month Challenge- Day 14

Posted on November 14, 2016November 14, 2016 by flareuphope

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.

Gratitude Challenge: Day 3-Fill Up My Cup

Posted on November 3, 2016November 3, 2016 by flareuphope

I would be a liar if I said I didn’t stress easily. I get stressed quickly when things are not in order or if life feels out of my control. Just a few hours ago I felt my blood pressure rise because I couldn’t get the tinfoil roll to fit in the drawer (first of all, why do they make tinfoil rolls to long to fit in a kitchen drawer?! What the fork.) and I was simultaneously freaking out because I haven’t finished packing and have to leave in the morning and forgot to get some extra snacks for the plane because I have this irrational fear that I won’t be able to find anything to eat. No major problems, but this kind of stuff can have the ability to ruin my night if I let it.

Ugh. Stress. Sweating the little things drains my spirit, and I let it happen far to often. My husband rarely stresses like I do, and when he does it is usually warranted. He’s constantly trying to get me to “shake it off” literally by doing crazy arm waving moves and “shaking away” my stress.

I try to work on not letting things get to me. I really do. I know that stressing over all of these things that really don’t need to be stressed over wears down my body and doesn’t contribute to healing or any sort of healthy lifestyle. I’m a work in progress.

Part of my self-care includes sitting down with a hot beverage and just sipping. It used to be hot water with lemons in the mornings, and that was awesome. Lately it’s been hot cider at night after dinner, and that’s great too. Something about a warm drink in a cute coffee mug fills my soul with comfort. It’s like with each sip some of that stress melts away, and I wonder why I was ever freaking out about the too junky junk drawer or whatever little thing that doesn’t matter in the first place.

What fills your cup?

The Health Activist Writer’s Month: Day 3

Posted on November 3, 2016 by flareuphope

Quotation Inspiration. Find a quote that inspires you (either negatively or positively) and free write about it for 15 minutes.

“Hope” is the thing with feathers –

That perches in the soul –

And sings the tune without the words –

And never stops – at all –

And sweetest – in the Gale – is heard –

And sore must be the storm –

That could abash the little Bird

That kept so many warm –

I’ve heard it in the chillest land –

And on the strangest Sea –

Yet – never – in Extremity,

It asked a crumb – of me.

-Emily Dickinson

This is more of a poem than a quote, but I love it anyway. To me, there is no life without hope. It doesn’t take a lot of effort to have hope, it takes a lot of effort to destroy hope. It doesn’t ask for anything in return. It’s always there, sometimes you just have to look a little harder for it.

I find comfort in looking for hope. I don’t like to ask why certain things happen, why I was diagnosed with an autoimmune disease, why some people are having problems healing and why I’m lucky enough to be in remission. I don’t ask why. I may never know the answer. I don’t look for the reason, I look for what good could possible come from a situation. I know it’s not easy for everyone to do, but I promise it makes life so much better.

There’s something to be hopeful for even in “the Strangest Sea” or the worst flare or the loneliest night. It makes your soul come alive. It sings. It floats. It lifts you up.

Hope is powerful. Some people think too much hope can lead to disappointment, but I don’t feel that way. I’d rather live in a world with too much hope than to not have any at all.

30 Days of Gratitude Challenge

Posted on November 1, 2016November 1, 2016 by flareuphope

I’ve been utterly exhausted and so frustrated about the amount of negativity and attacking I’ve seen on social media lately. I’ve been lurking in the background swiping through posts upon posts of complaints and negativity and worries and fears. This toxic thought pattern has drained part of my spirit and makes me question why I came out to start this blog and find support out here in the first place.

I’m starting a 30 day gratitude challenge for myself. I need this. I need to reconnect with why I blog about how having a chronic illness impacts my life and my mental health. I need to get back to gratitude for being alive, for having the gift of this life. I need to determine if I want to continue this. Be the change, right?. I’m tired of the negativity, so I’m not going to contribute to it.

Do you feel drained? Maybe you need this too? Feel free to join me, I’ll be posting daily throughout November in honor of the month of Thanksgiving- and just reminding myself to give thanks, and to find the light in the darkness.

Here are the dates and suggested writing topics I created for the month to spark a gratitude practice. Feel free to screenshot, join, share and follow along on instagram and twitter, I’m @flareuphope pretty much everywhere. Let me know what you’re thinking of his month and tag me in your posts so I can see.

Chronic illness isn’t fun, but there’s always something to be grateful for. Stay tuned for my first post tonight!

Hope Warrior -Kristen Boehmer

Posted on September 14, 2016 by flareuphope

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!

Will Essential Oils Cure IBD?

Posted on August 14, 2016October 22, 2016 by flareuphope

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 Healing. She 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

Hope in Plot Twists

Posted on June 17, 2016 by flareuphope

I’m married!! Our wedding was an amazing rainy day and we left and spent the following week in beautiful Northern California, ending in San Francisco before taking the red eye back home the following Sunday.

I was blessed enough to be able to enjoy my wedding and reception in remission, thanks a lot to remicade and my lifestyle choices that I practice daily. I was planning on writing this blog about my tips on how to deal with IBD on your honeymoon, but the tides have turned, so I’m writing to tell you about why I can’t take remicade until further notice.

I had a follow up visit with my GI just to check in (standard appt every 6 months) the day after we returned from our honeymoon.
I was shocked and saddened and depressed and furious to find out that they are denying my remicade treatments for future infusions.
I had a blood test come back positive to TB. My skin test came back negative and so did the chest x ray. The doctor stated in the office that due to my noncompliance and failure to see an infectious disease doctor, they would no longer sign off on the remicade.
Let me interrupt here and state how at this moment I burst in to tears. Noncompliant?! I had no missed calls, no voicemails, no letters no GD portal notifications that they always say to check, absolutely NOTHING that told me this was going to happen . No referrals, no notice by pigeon carrier or telegraph. Nothing. (I even called Verizon to verify my phone records after I left the office. They never called me or left a voice mail on the one date they said they did, may 17th My appt was June 14th.) I had no idea I was supposed to be getting a referral for an Infectious disease doctor and that I needed to start treatment for a disease I didn’t really have.

Needless to say, the PA handed me at box of tissues and said, and I quote. “Don’t stress. Stressing causes flares.”
Followed by
“UC is a very serious disease. You could loose your colon. TB is also very serious.”
No help at all dude. Why do you think I was bawling in your office? I know UC is serious, I have it. I was in the hospital and almost lost my life because if it. I am very careful in how I eat, drink, sleep, and am active because of it. I know my disease.

He said I needed to see and ID doctor asap, but it would probably take a month or so and then whatever he decides would determine how we proceed. So basically I had no infusions and no plan. Just a wait and see.

I messaged my PCP immediately after I got home and left a message with her receptionist. Luckily my PCP is an angel and she was up until midnight working to get me an appointment the next morning. She has a Jpouch and knows IBD, and knows I’m not a noncompliant patient. She made it very clear she’s here to support me. I wish everyone had a doctor like her.

I went to the ID doctor and, to avoid getting into all the technicalities bc I understood nothing when I left there, I’m going to explain the results like how my PCP explained them to me.

I don’t have active TB. I was probably exposed to TB at some point in my life and that’s why it’s in my blood stream. It very likely could be that the blood test is a false positive and I was never exposed in the first place. Other bacteria etc can produce a positive when it’s not actually TB.
I still have to be treated for TB before we can even think about restarting remicade, false positive or no. If you’re on remicade and you get a positive TB reading, it’s no more remicade for you, perhaps indefinitely.
My treatment is 3 months long, starting tomorrow, 2 medications twice a day. I would miss 2 infusions. If antibodies don’t build, I may be able to restart remicade and it may still work. We don’t know. And I have yet to get answers from my GI.
My GI was asked by the ID doctor to see if I can get both at the same time. I’m doubtful that they will approve it and I have yet to hear back from them since Tuesday.

So, I’m starting off my marriage going from total bliss and gratitude to shock, saddness, anger and really pushing our in sick and in health vows.

At the moment, I’m processing the fact that I have to take these medications in the first place. I’m devastated that the drug that has brought me to remission and given me a chance at a semi normal life is being ripped away. I have a lot of anxiety and depression creeping in. But, I’m coming up with a plan, and I’m dealing with it. This won’t defeat me. Us. This life we’re building.

The first thing this weekend is to get the space in my house cleared out and make some positive energy, because I’m going to need all that I can get for these next few months.
I’m trying not to dwell on the things I’ll be missing, but instead thinking of it as a new path I’ll be taking. A plot twist, if you will.

It’s not easy to think like this. I’m writing this through tears right now. It sucks. But, I’ve got a great support system, and like my husband (!) said, they will be there every “suck of the way.” There might be rain right now, but like the sun is coming soon. And now I’m done with the metaphors, and have brought you all up to speed, so here’s some happy wedding day photos.

Flare Up Hope

it starts with a spark

chronic illness