Saving on prescription costs: Easing the financial burden of IBD

This blog post is sponsored by Inside Rx. All thoughts and opinions are my own. The Inside Rx trademarks and graphics are used with permission of Inside Rx, LLC. 

Sticker shock. Disbelief. Concern. If you live with a chronic illness like me, chances are you’ve experienced all of these feelings when it comes to purchasing prescription medications. The cost to manage IBD can come with a hefty price tag. Whether it’s having to purchase the most expensive insurance plan so you have the lowest deductible or having to fork over money for your daily pills and biologic drug treatments—it’s a lot to handle, from both a physical and a financial standpoint.

According to the CDC, in the past 30 days almost HALF of people (48.9%) have used at least one prescription drug. About 23% of people used three or more prescriptions.[1] This comes as no surprise when you learn that by 2020, 157 million Americans will be living with a chronic illness.[2] This is where Inside Rx comes in. Launched in 2017, the Inside Rx prescription discount card can make saving on prescription medications easy. The Inside Rx card is not insurance and offers eligible users discounts on brand and generic prescriptions.  See InsideRx.com for terms and restrictions, and to learn more.

Inside RX

Here’s how it works:

  • Go to InsideRx.com to search for your medication and find the best deal and closest participating pharmacy near you. The Inside Rx card can be used at more than 40,000 pharmacies across the United States and Puerto Rico.
  • Download a free prescription savings card and see how much you could save on brand-name and generic medications.
  • Show your prescription card to a pharmacist.
  • Enjoy the savings and use the same card every time you pick up your medication.

Adhering to medication guidelines and following through with doctor’s orders is imperative in managing a chronic illness. Inside Rx works to ease the stress off your shoulders so you don’t have to cut back on your treatment or never fill a prescription. Rather than jeopardize your health and wellbeing, check this out and see if the savings can help you. There’s no shame in saving and it’s certainly something you should see if you can take advantage of.

Inside RX2

Be your own best advocate

As you navigate IBD, it’s programs like this that help our community and deserve a shout out. In my nearly 14 years living with Crohn’s, I’ve found that prescription and biologic savings programs are often not articulated by medical professionals. Instead, as patients, we’re just supposed to or expected to find them on our own. This is a shame. Unless you’re told or hear from a family member or friend, you may be paying full price for a medication that has a significant price reduction.

Inside Rx for our four-legged friends, too!

Recently I had to put my 10-year-old Chihuahua Terrier, Hamilton, on seizure medication. There’s even an Inside Rx Pets card, which offers discounts on select human medications prescribed for pets. I went to one store and was told a month’s worth of pills was going to be $86, I went to another store down the road and was told the cost was $26. Now that I know about Inside Rx, I’m able to get his medication for $20 a month.  Savings may vary for your pet’s medications though, so do your homework and visit InsideRx.com/Pets to see if you can save by taking advantage of these helpful tools for patients and pets. And please, communicate with your care team if you’re unable to fill your prescription, rather than not taking it at all. You’ll be thankful in the long run.  Visit InsideRx.com for more information and terms.

[1] https://www.cdc.gov/nchs/fastats/drug-use-therapeutic.htm

[2] https://www.nationalhealthcouncil.org/sites/default/files/AboutChronicDisease.pdf

 

 

10 Tips for Ensuring Your Significant Other Can Handle Your IBD For the Long Haul

This article is sponsored by Healthline. Thoughts and opinions are my own.

Dating is complicated. Dating can be stressful. Dating can force you to get out of your comfort zone.

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One of my first photos with my husband, Bobby.

When you live with a chronic illness, dating can be downright daunting. When should you bring up your IBD with a significant other? How can you navigate the ups and downs that come along with your illness? How can you reach a sense of comfort when you need to run to the bathroom or cancel plans?

There’s not only one correct answer to any of those questions. But, as a woman who was diagnosed at age 21, who is now 35 and married with kids, I’m happy to share what worked for me. I recently led a Live Chat on Healthline’s IBD app about this topic. The main areas of concern revolved around significant others failing to grasp the severity of the disease. It’s difficult to fault what can sound like shortcomings, but being a caretaker isn’t easy. Not everyone is cut out for it.

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Celebratory post- colonoscopy cheesecake!

And that is ok.

Here are my top 10 tips for educating significant others—whether it’s dating or marriage about what your experience as a patient is like.

  1. Bring your loved one along to doctor appointments.

Oftentimes, people have no clue how severe and debilitating IBD is. Let your partner hear it from the horse’s mouth (i.e. the doctor). By sitting in on appointments, not only is it a source of support for you, but a chance for them to ask questions, listen to the discussion, and hear about all that goes into managing your chronic illness.

  1. Have a social worker or counselor speak with you both so that you’re on the same page.

Oftentimes a loved one isn’t acting maliciously; they just don’t know how to cope with what life with IBD entails. Talking with a professional gives you a safe space and an even playing field to ‘air your dirty laundry’ and gather advice about actionable ways you can improve your relationship.

  1. Communicate when you’re in pain—don’t sugarcoat or downplay your symptoms.
    If you’re hurting, say it. IMG_7446If you’re struggling, tell them. The more you keep your mask on and your wall up, the more your partner will think you have everything under control and that your IBD isn’t much of a “big deal” in your life.
  2. If your feelings are hurt—articulate why. Resentment leads to stress and can activate symptoms. Be brutally honest and open. You can’t expect your lover to be a mind reader. By bottling up your frustration you may take out your anger in a big way, when an issue could be solved and nipped in the bud before it becomes bigger than it needs to be.
  1. Connect with fellow IBD patients on Healthline’s IBD app.

Whether it’s a live chat, reading articles, or matching up with fellow patients, Healthline’s new IBD app is a space where we all get you. We’ve all been there. We’re all standing ready. Ready to lift you up. Ready to answer your questions. Ready to listen to you vent and share advice. Advice that can make a major impact in your most personal and important relationships. Because at the end of the day, you want someone who loves you for all of you, and that includes your IBD.

  1. Share blog articles and social media posts from fellow IBD advocates that may be able to articulate what you’re going through.

Sometimes as patients, we’re going through so much but it can be difficult to put into words. While each person’s disease presents uniquely, chances are we’ve gone through similar experiences. If you read an article that resonates or see a post on social media that hits close to home for you—share it. This is an easy way to casually show the person you love that this is what you’re going through. A simple email with a link to an article—works wonders.

  1. If you want your person by your side at procedures and during hospitalizations, say it.

During the live chat, there was some discussion about fiancés and husbands not going to procedures or being by the bedside during the hospitalization. That a put a lot in perspective for me, as my husband has never left my side when I’ve been hospitalized (not even for an hour) and has gone to every colonoscopy.

Photo by J Elizabeth Photography www.jelizabethphotos.com

Photo cred: J. Elizabeth Photography

I’ve never had to ask. Bobby just does that because he wants to. If you want your significant other there, tell them. The disease is isolating enough, the last thing you need is to be lying alone in the middle of the night with your racing thoughts and the beeping machines.

  1. Be with someone who you can be vulnerable with.

IBD isn’t pretty. There are days where we’re cooped up in the bathroom. There are times we’re in the fetal position for hours. If you feel at ease at your worst with your person, that’s a good sign. Recognize how you feel when you’re at your lowest point and at your best. Pay attention to how they respond when the going gets tough.

  1. When the red flags are waving feverishly in front of your face, don’t be afraid to walk away.

Listen to your gut. You know deep down if you constantly feel like a second thought or if your partner repeatedly lets you down. If they make you feel guilty, less than, or put off by your patient experience, time to say buh-bye. Trust me, you will count your blessings in the future.

  1. Take them along to local Crohn’s and Colitis Foundation events. IMG_8059

By attending local events you’ll be able to connect face-to-face with fellow couples and families living your same reality. You’ll discover how much you have in common right away. This also enables your partner to have someone who “gets” what it’s like to be a caretaker. Set up a double date or a time to hang out outside of public events.

The patient physician dynamic: 5 tips for finding your match

Raise your hand if you’ve considered switching physicians. Raise your hand if you’ve driven more than an hour to seek care. IBDSocialCircle2While attending IBD Social Circle at Digestive Disease Week in San Diego, I listened to a panel with Dr. Neilanjan Nandi, MD, FACP and Dr. Aline Charabaty, MD about the patient and health care practitioner dynamic.

It was an enthralling discussion that opened my eyes to the medical care available to the IBD family. They talked about how physician and patient relationships should not feel like speed dating. Seek a physician who truly cares about how IBD is impacting your life, someone who wants the context behind your symptoms. Rather than a physician wearing a white coat and sitting in front of you, look for one who sits next to you and leaves the white coat off.IMG-2081

If you’re constantly feeling like your GI is being complacent with your care or that you are just a number, you may want to consider finding a physician who’s a better fit. When doing so, it will take some effort on your part. Here are some tips to make the transition a bit less stressful.

  1. Look for a GI who specializes in IBD. Not every GI is passionate about Crohn’s or ulcerative colitis, it may not be their specialty. Finding an IBD specialist will put you in the hands of a care provider who knows the ins and outs of your disease.
  2. If you’re making a road trip to attend the appointment, let the office know. Before you drive hours for an appointment, let the nurses in the practice know that this isn’t a run-of-the-mill appointment. Maybe they can allot more time.
  3. Have your records sent over before you go. Provide the new physician with your back story, so they can familiarize themselves with your patient journey before your first face-to-face.
  4. If tests will be needed, see if they can all be arranged in one day. Save yourself a trip (or two) and check with your physician to see about them getting preauthorization for any tests or procedures ahead of time. This way insurance is notified and it’s one less headache to deal with down the road.
  5. Build a rapport with the nurses in the office. Don’t be afraid to lean on nurses for support. They are often the “middleman” between you and the physician. I rely heavily on the nurses in my GI office. Nurse Penny and I are buds!
  6. BONUS TIP: See if a family member or friend can attend the appointment with you. As the patient, sometimes it can feel as though the teacher from Charlie Brown is talking while we’re sitting in an appointment. So much is being thrown at us, so much is being said—but we’re not comprehending what it means for the present and the long term. By having a loved one by your side, they can take notes—so you can focus on asking the questions you need answered. That extra set of ears and eyes works wonders.

IBDSocialCircleSwitching physicians and entrusting someone new with your well-being is not easy. Trust your gut (for once!) and advocate for care that makes you feel like you have a voice. Think about how you feel leading up to an appointment, while you’re face to face with the physician and the emotions you may experience on that drive home. If anything makes you feel less than or not heard, connect with fellow patients in your area to see who makes up their care team. Do research about IBD specialists within drivable distance and take the steps you need to feel like you have your best ally against this disease.

Healthline unveils new IBD app: What you need to know

This article is sponsored by Healthline. Thoughts and opinions are my own.

I met my husband thanks to a dating site nearly six years ago. I never dreamed I would one day be able to connect with fellow IBD warriors through an app, but hey thanks to Healthline, it’s now possible! IBD_Facebook_Ads-1200x628_Real-Life_5Over the next month, I’ll be partnering with IBD Healthline. I am so excited to share my journey using the app and explain how you too can benefit from all its invaluable features.

When I was diagnosed with Crohn’s disease at age 21 in 2005, I felt incredibly isolated, alone and scared. Like anyone with chronic illness, it can be difficult to not only articulate theses stresses but find people who genuinely care and empathize. The IBD Healthline app addresses this by providing a safe space to conversate with those who live your reality. By communicating with others in the IBD community, it empowers us and is a reminder that there’s a huge network of support right at our fingertips, 24 hours a day.

My favorite functions of the app

One of my favorite parts of Healthline’s IBD app is how it connects you with one new member each day, based on your disease, age, and lifestyle interests. You can check out fellow member profiles and request to connect, too! IBD_Facebook_Ads-1200x628_Real-Life_2I don’t know about you, but the more people I know with IBD, the stronger it makes me feel as I take on the disease.

Healthline’s IBD app is a great gathering place for our community to share experiences, learn from one another and offer support. Many of us tend to sugarcoat our day-to-day experiences, here you can be honest and trust that you won’t be judged for your struggles or setbacks. It’s intuitive and easy to use, whether you’re a patient or a caregiver.

Along with the personal connections, there are medically approved wellness articles IMG_0811and podcasts shared each week on everything from diagnosis to nutrition and self-care tips. The more educated we are about our illness, the better advocates we can be for our care.

Check out the Live Chats

Another great aspect of the app is the “Live Chat” function. Each Healthline Ambassador will be hosting chats in the coming weeks. Save the date—I’ll be hosting a live chat Monday, June 3 about dating, relationships and marriage with IBD. I’m thrilled to have the opportunity to share my personal insight on this subject matter with you and lead the discussion. It’s my hope my words and patient journey will comfort you and give you hope as you navigate life with IBD.

This free app is brand new and was just launched this month. You can download it onto Apple and Android devices by searching for “IBD Healthline”. As patients we are up against so many unknowns, this app is a great constant to have as you deal with the feel-good days and the not so good days. I look forward to connecting with you all!

You can access the free IBD Healthline app here: https://go.onelink.me/LOC7/6dae5800.

5 Helpful Day-to-Day Tips for IBD Moms

Hey IBD mamas and moms-to-be—this article is for you! With Mother’s Day this Sunday, I wanted to share 5 of my “life hacks” for taking on motherhood while living with IBD.
IMG-1309As a mom of a 2-year-old and an almost 4 month old, I’m in the thick of motherhood right now. While it’s an amazing season of life, it definitely has its challenges. A toddler, a baby, and a chronic illness. Ah, I’m exhausted just reading that myself! While it’s far from easy—I’ve found some ways to help embrace the ups and downs and everything in between.
Here are my 5 helpful tips for IBD moms: 
1.  Don’t be afraid to ask for help.
By verbalizing your pain and communicating openly with family and friends, you open yourself up to a network of support. Don’t try and be a martyr or a superhero. In the end the only person you are hurting is yourself. A few hours to yourself will do wonders for your psyche, you’ll feel rejuvenated and refreshed and you’ll be a better mom because of it.
2. Stay on top of daily disease maintenance: your medication, your doctor appointments, blood tests, and annual scopes. 
Moms have a reputation for putting themselves on the bottom of the totem pole. When it comes to chronic illness, lapse in taking medication and managing your illness can set you up for a flare up. IMG-7462No one wants to be hospitalized or deal with pain. Give yourself the best chance for having feel good days and make your disease management a priority. If you feel symptoms presenting and you’re concerned, alert your GI immediately. Be proactive, nip each flare in the bud as best you can.
3. Busy boxes for the win!
Once you have a toddler—or more than one child, these are lifesavers! Look up ideas on Pinterest and create boxes to keep your little one busy when your fatigue is overwhelming or when you’re in a lot of pain. I went to Hobby Lobby, Michaels and Target and created fun boxes for Reid filled with everything from puzzles to coloring books to sensory activities with noodles. I made a busy box for each day of the week. You can do so very economically!
4. Practice self care as often as possible.
IMG-9834Yes, I know. Self care. We hear it all the time. It’s something that’s constantly talked about, that seems unattainable. But try and do something each day for yourself, whether it’s taking a shower, eating a meal sitting down, going for a walk outdoors with your little one and keeping your phone on silent, reading a book before bed, you name it. Try and find the moments in your day when you can unplug and relax. Practice yoga and meditate during nap time instead of doing the dishes or laundry. You owe it to yourself!
5. Give yourself grace. 
Motherhood is an incredible experience, but it’s not easy. Add chronic illness to the mix and it becomes even more difficult. Don’t beat yourself up on the days you aren’t feeling well and need to stay indoors and lay low. Stop comparing yourself to the mom who seems to have it all together on social media. We all know we have hot mess moments, that’s life. Focus on all the happiness and joy you bring to your little ones life. You are their world. IMG-8890You were given this role and this family because you were meant to have it and you were destined to live this life.
Bonus Tip!: Wear your baby. Baby wearing will do wonders for your joints and your wellbeing. Not only does baby love being close to you, it helps give you a bit of a break whether you’re out and about or at home.
On this upcoming Mother’s Day and always, I commend every woman for their efforts. You are remarkable. You are a warrior. You are a guiding light for your loved ones. And you deserve to be celebrated for all that you do, day in and day out.

Why I cried talking about Crohn’s at my friend’s rehearsal dinner

I stood before a room of strangers last week and shared some sentiments about my friend Jenna who was marrying the love of her life the next morning. Chances are—you’ve been at a rehearsal dinner and participated in the ‘open mic’ opportunities.

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Jenna’s birthday, 2009

As a former TV newsie, I always enjoy a chance to speak and articulate my feelings! I started out talking about how we knew one another and the type of friend she was—and then I went for it. I broke out the “C” card…the “Crohn’s” talk. Most of the people in the room were strangers to me until that night, some probably had no idea what Crohn’s was.

In that moment, I tearfully thanked my friend of more than 12 years in front of a roomful of people for always being present, always genuinely caring and for always being there not only in life’s amazing moments—but also through every flare up I’ve experienced along the way. When you are diagnosed with a chronic illness, you don’t stop and think twice about which friends are going to be there, you just expect it. Unfortunately, you’ll find many ‘friends’ tend to fade to the background and will continue to do so throughout your patient journey.IMG-0841

This friend—is the opposite. This friend has sent me countless snail mail letters on adorable stationary—some with Ryan Gosling’s face plastered all over it, others with an inspirational girl gang type quote. Each time I’ve been hospitalized, she’s been my constant ray of sunshine. Always texting. Always calling. Always checking in on me. Her efforts seem effortless. And that my friends, is priceless. Rather than feeling guilt for being “that friend” she makes me feel empowered and loved.

When you live with IBD (or any chronic illness for that matter)—seek out your Jenna(s). IMG-0838Find the people who lift you up. Trust in the bonds you create with those who are there for you because they want to be out of the goodness in their heart, not as an obligation. Hold on closely to the relationships that spark joy and don’t extinguish your flame. Lean on those who are willing to give you their hand to lift you up, even when you don’t ask for it.

At Jenna’s rehearsal dinner, I wanted her to know. I wanted her to know how her compassion and empathy meant the world to me. I wanted her to know how much I appreciate all the effort she continually puts into our friendship, despite living out of state from one another for the past decade. I wanted her friends and family members, and her now husband to see the impact she’s made on my life and how her efforts to be there, make her who she is.

My hope for the IBD family is friendships like this. The ones that stand the test of time. The ones that ground you. The ones that show you the beauty of another’s heart. The ones that remind you that you aren’t ever going into battle alone. The ones that serve as your light when the days are dark. They exist. They are possible. You just need to find them.

Wedding photo cred: Savannah Kay Photography

Writing for a reason: IBD Pen Pals

Who says snail mail is a thing of the past? For one 10-year-old in the Chicagoland area, connecting with fellow IBD pediatric patients is helping her cope, comfort and help others as she takes on Crohn’s disease herself. emily4Meet Emily. This past February she received her chronic illness diagnosis. Even though she’s brand new to IBD life, she’s taking all the pain and all the setbacks in stride.

Her mom, Michelle, says watching her young daughter go through Crohn’s has been a punch in the gut.

“It’s overwhelming, lonely, and mentally draining for everyone involved. Her little body has been put through so much in the last few months and she just goes along with it all. I wish I could’ve done all the horrible tests and take away every ounce of her pain. My heart breaks every time she gets poked, every time she takes medicine, every time she has to do a test, or when I send her to school, knowing she feels horrible.”

Emily’s courage and compassion for others has inspired Michelle. Her Crohn’s diagnosis has spurred an interest to connect with other IBD kids. Rather than take on the disease in silence, Emily finds there is strength in numbers, a purpose for her pain. Emily penpalHer mom was able to reach out to fellow parents on Facebook about a pen pal program.

“How cool to come home from school and have a couple letters waiting for you from kids all over the country?!? Emily has already made 12 new friends with IBD from the U.S. and the U.K. I never want Emily to feel alone on this journey nor do I want any other kids to feel alone. I want Emily to see that other kids who have IBD are living a “normal” life and that she can, too! There may be days when I won’t understand what she’s going through, but her new friends will.”

Emilyand michelleFrom a parenting perspective, the pen pal group has introduced Michelle to other mamas going through the same fears and experiences. The connections have brought her peace of mind as she navigates these new waters with her daughter.

“Emily and I are firm believers in spreading positivity and what you give out, you get back. It’s up to us to find the good in this situation and what better way than emilylettermaking new friends? Friends who understand and continually cheer you on, no matter how far they are. My hope is that Emily will make life long connections and that these letters will serve as a constant reminder that she is never alone.”

Interested in joining this pediatric pen pal group? A Facebook page is in the works. In the meantime, you can get involved by emailing Emily’s mom, Michelle: positivelyshelly@gmail.com.

Breastfeeding with IBD: 5 tips for getting started  

You can think of us as ‘bosom buddies’—IBD moms trying to navigate life with chronic illness as we take care of our families.  Both of us battle Crohn’s. Both of us are on Humira. Both of us are bloggers and passionate chronic illness advocates. For Gutsy Girl blogger, Stacy Ransom, one of her main missions was to breastfeed her son. As a mom who chose to formula feed my son and who is currently breastfeeding my 12-week-old daughter, trust me—I get the guilt, I get the struggles, I am completely of the mindset that ‘fed is best’. The same can be said for our guest blogger, Stacy. This week she shares her insight on breastfeeding with IBD and offers up five helpful tips for navigating nursing. image1 (11)

Breastfeeding is a touchy subject. I’ve purposefully avoided discussing my experience for fear of offending others, because it seems that regardless of the stance you take, someone always gets upset. I’d like to start with abundant clarity that above all, fed is best and there is zero shaming here for mothers, regardless of the path they choose.

I was diagnosed with Crohn’s Disease in 2015 and spent years doubting my body’s ability to do anything right. When I became pregnant with my son in 2017, I wanted to do everything possible to prevent future gut issues for him.

We don’t know the cause of Inflammatory Bowel Disease, but someimage2 (1) studies suggest it may start with a bacterial imbalance in the gut, and several studies have shown that people with IBD were less likely to have been breastfed as infants. Furthermore, a study in Denmark showed that breastfed babies developed certain types of healthy bacteria in their digestive tract, which non-breastfed babies were lacking. A healthy amount of beneficial gut bacteria can promote a healthy immune system which fends off different diseases.

When I became pregnant with my son, I opted to deliver via cesarean due to my IBD, but I knew this would shift his first gut community. I read all the studies and learned all the digestive benefits of breastfeeding, so I wanted to do everything I could to set us up for breastfeeding success. My Crohn’s specialist also said she had noticed a decrease in postpartum flares among her patients who breastfed. I was really committed to giving this my best effort.

image3 (2)It wasn’t easy, but I’m so glad I stuck with it. We lasted 16-months until he self-weaned and he has a very healthy immune system so far, despite the cesarean and me being on Humira. Best of all? I didn’t have a postpartum flare, which my doctor attributed to the combination of staying on my medications, following my diet plan and breastfeeding.

I know not everyone has a positive nursing experience, but I’ve received countless messages from new mothers with issues that can easily be either resolved or prevented entirely. If you’re an expectant mother with IBD and think you want to try breastfeeding, here are some of my best tips for getting started:

  • Gather your supplies early. I stocked our fridge with easy, healthy, nursing-friendly snacks. I also made “nursing stations” in key areas around the house including a water bottle, snacks and lanolin cream. I bought a few very loose, button-down shirts to allow for easy nursing access and air flow throughout the day. I also got a few soft nursing bras in a full cup size bigger than my normal size (depending on your “normal” you may opt for two cup sizes bigger), and machine-washable, cotton nursing pads. They stick less than the disposable ones and cause less irritation, in my experience.
  • Find a Lactation Consultant. I can’t stress this enough. No matter how many YouTube videos you watch, nothing can compare to a real expert standing with you and guiding you through. Most hospitals will provide at least one consult before you are discharged. If yours does not, contact your local La Leche Foundation for support. Don’t listen to people who tell you it will just “come naturally,” because you BOTH are learning and the right latch from the beginning makes a world of difference! Some pain is normal in the beginning, but if it’s unbearable or if you start to bleed, something is wrong, and you should have a professional adjust your latch or check your baby for a lip or tongue tie.
  • Start off strong. Allow your newborn to latch as much image4as possible, especially in the first 24 hours, and provide plenty of skin-to-skin. After a c-section, the last thing I wanted to do was constantly get in and out of bed to pick up a newborn. Instead, I just spent my days with my son nestled on my chest so we could both sleep, heal, bond and get my milk flowing.
  • Stay positive. Stress won’t help either one of you (and it certainly don’t help your IBD). Relax and take deep breaths as your infant latches. Your milk may take a few days to fully come in, and it may take several weeks to get in a good rhythm. If you feel your supply is “low,” don’t panic. You are likely still producing enough to sustain your infant, as they don’t need much in the beginning. Continue to latch as much as possible (at least every two hours), and don’t supplement with formula unless your doctor advises you to. With that being said…
  • Trust your doctor. You and your baby will have regular check-ups to ensure he/she is gaining the appropriate weight. If they’re not despite your best efforts, it’s 100% okay to supplement. Fed is best and no one wins if your baby is hungry and you’re stressed. Trust your doctor in terms of gauging when to keep trying and when to supplement.

Above all, try to remember that while this is a totally natural experience, sometimes (especially for those with chronic illness) things don’t work like they’re “naturally” supposed to. image5Cut yourself some slack. Becoming a mother is stressful, but if you are feeling overwhelmed, talk to someone. Postpartum depression and anxiety are very real and as a mother with chronic illness, you may be more prone to those feelings. Seek out help from your spouse/partner, enlist nearby family/friends for support, and keep in close contact with your doctor to manage your symptoms.

And if nursing doesn’t work out for you, be kind to yourself. Your baby will still grow up to be healthy and loved, and that’s all that really matters.

Check out Stacy’s blog: https://gutsy-girlblog.com/

Connect with her on Instagram: @gutsygirlblog

 

 

The days are long, but the years are short with chronic illness

The days are long, but the years are short. Oftentimes this ‘saying’ is commonly shared when talking about parenting. This past weekend my first born turned two. A rush of emotions came over me as we celebrated my son Reid’s special day. I got to thinking—the same is true for life with chronic illness. Reids second bday

The days are long, but the years are short. When you hear that life-sentence uttered from a doctor, your world comes to a standstill. Everything from your past and everything in your future seems to come to an abrupt halt. You feel like you’re suffocating and there’s no way you can go on. But you do.

The days are long, but the years are short. As I come up on 14 years this summer since my diagnosis of Crohn’s disease, I can hardly recall who I was before my IBD. That person, that identity—seems somewhat foreign to me. When you think “14 years”, it sounds like a long time—but, it feels like a blink of an eye. It’s a blur of experiences—some painful, some amazing. I choose to focus on the amazing.

The days are long, but the years are short. When you’re dealing with abdominal pain, when everything just hurts, when you experience nausea and vomiting moments after you try and eat, the days feel endless. IMG_8476When you’re in the thick of a flare and when feel good days feel far from ever being a possibility, try and remember how fleeting these moments are.

The days are long, but the years are short. When you’re being rolled in for another CT scan in the emergency room, when the nurse can’t seem to get an IV started on the fifth try, when you’re dreading your injection, when the colonoscopy prep is making you gag on your knees in the middle of the night in the bathroom, when you’re up counting the hours before surgery, feeling like the world is on your shoulders—remind yourself, this too shall pass.

The days are long, but the years are short. With children as they grow up, we can visually see the physical change going on. Two years ago, my son was a newborn, IMG_6459today he’s a rumbustious, adorable, little ball of energy. Sure, we age, too—but we also mature mentally when it comes to our illness. What felt like the biggest obstacle and scare of our life, evolves into something that is a part of who we are, an identity that while not ideal, helps to define us.

The days are long, but the years are short. Every year without needing to be hospitalized, every year where you feel like you have your disease under control, every year where your health doesn’t take you away from the life you are yearning for, hold on to those years.

The days are long, but the years are short. Rather than wish time away, I try and remind myself how each and every comeback is stronger than the setback. That every time I’ve been knocked to my knees by my disease in the past, I’ve come out of the storm stronger and with greater perspective about this life I’ve been given.

The days are long, but the years are short. You don’t always have to love your life. You can certainly mourn the loss of who you were prior to diagnosis, lord knows I did. remedy-nsmith-stlouis-1283But I can promise you, that as life goes on and as the years since that moment of diagnosis get further and further in the rear view mirror, you will find a comfort in this identity.

The days are long, but the years are short. You will garner a confidence in your strength that wasn’t there years before. And someday, you too will pause and think about where you’ve been and how far you’ve come to reach this moment. I hope you give yourself a proverbial pat on the back to honor your resilience and determination to live your life despite all the what if’s, despite all the pain, despite all the worry. Because you my friend, are a warrior—day in and day out—and you are so much more than your disease.

Why my husband is much more than a caregiver, Dr. Phil

I still remember the moment I told my husband I had Crohn’s disease. It was a beautiful August afternoon. We sat overlooking water at a boathouse in St. Louis on our third date. As we enjoyed casual conversation and a mutual interest in one another, I knew I had to tell him about my chronic illness.

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Photo from our third date, the day I told Bobby I had Crohn’s disease.

Nervous to rock the boat. Scared to be judged. Worried it would tarnish the image of who I was so far. I just wanted to rip off the band aid and get this conversation over with.

It was never easy to navigate dating and relationships with my disease. I was diagnosed with Crohn’s at age 21 in 2005. I met Bobby in August 2013 at age 29. Rather than seem put off by my disease, he inquired and showed empathy from that point forward. Never once did he make me feel less than or unworthy of love. In that moment, I knew I had found someone special and I felt a huge sense of relief.

Fast forward to this past month and all the conversation surrounding Dr. Phil’s heartless and ignorant comments about caregiving and relationships. I didn’t see the episode live, but have seen the countless posts on social media being shared to prove him wrong. I watched the interview clip after the segment aired and couldn’t believe my eyes or my ears. Dr. Phil told an interabled couple that “100 out of 100 relationships that involve caregiving fail.”

Photo by J Elizabeth Photography www.jelizabethphotos.com

Helping me walk down stairs during our engagement photos–21 days post op from my bowel resection surgery. Photo cred: J. Elizabeth Photography

It pains me to even write the idiotic words that man said. Not only is it upsetting, but it breaks my heart to think of all the young, newly diagnosed chronic illness patients out there who were already wondering if they were worthy of love because of living with a disease.

IMG_0077I’m here to tell you that you are. I truly believe my vulnerability with my Crohn’s and how I deal with flare ups is a big part of why my husband fell in love with me. Chronic illness isn’t pretty. It forces you to see the world without rose-colored glasses. It makes you realize the importance of your health and how quickly it can be taken away from you.

There’s a reason why you say “in sickness and in health” in wedding vows. My husband chose to spend his life with me, because he loves all of me—even the part of me that is riddled with illness. People are cut out to be caregivers or they’re not. You’ll come across this in your life and know which family members and friends have a special way about them. Those who don’t have this trait and ability aren’t meant to marry people like you and me. And that’s fine.

But to say that 100 out of 100 couples will fail because caregiving is involved couldn’t be further from the truth. It’s through Bobby’s caregiving that I continue to fall more and more in love with him. It’s those moments when I need help to get through a pain-filled day that I’m reminded just how strong and unbreakable our love is.

IMG_9492Caregiving looks and means different things to everyone. It’s not just about being a caregiver in the hospital or at a nursing home. It’s taking care of the one(s) you love on a typical day at home. It can be something as simple as rubbing your back or taking care of the kids while you’re stuck in the bathroom. It can be dishing you out ice cream after you give yourself an injection. Or holding your hand on a walk outside following a hospitalization. It’s those caregiving moments in particular that remind me constantly of the everlasting love I’ve found and make me 100 percent positive we will make it through, for the rest of my life.

My words of advice for you—if you’re a caregiver, know how appreciated you are—for all the little things and the big things. photo by J Elizabeth Photography www.jelizabethphotos.comIf you’re someone dealing with a disability/disease—don’t allow Dr. Phil’s ridiculously inaccurate comments make you think you aren’t worthy of love, because you are and always will be.