The Bellwether Life

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  • Confessions Of A Gold Star Sister

    Confessions Of A Gold Star Sister

    I walked my oldest daughter into middle school for the first time recently. That in itself is emotional, but as I walked into the school, I was transported back to my 6th-grade year.

    PTSD isn’t just something that can happen to soldiers, but to anyone whose been through a traumatic event. Symptoms of PTSD can include: flashbacks, intrusive thoughts, nightmares, intense distress at real or symbolic reminders of the trauma, nausea, anxiety and more.

    (I also have medical/complex PTSD with symptoms of overthinking, flashbacks, and hypervigilance)

    A flashback is a vivid experience in which you relive some aspects of a traumatic event. As I walked into the school for open house I felt like my vision was clouded with movie reels of events.

    My 6th grade year a tornado hit our middle school, school was delayed 2 weeks. We used the gym, the stage, and trailers for makeshift classrooms. I was sitting in my English class on the stage when we seen 9/11 live on TV.

    As we continued to walk the halls, finding classes and meeting teachers, I walked into one particular classroom and I seen myself in 7th grade. I was getting called for early dismissal, my brother was being deployed to Iraq for the first time.

    In 8th grade I was also called for early dismissal, as I walked into the front office my brother was there. He was on leave and surprised me. He always went out of his way to make sure I knew I was loved.

    These memories seemed so real, like I could reach out and hug my younger self and tell her to be brave. The year after I graduated high school I got a call in the middle of the night; “Your brothers dead” was the words that hung in the air and changed so much in an instant.

    My brother Sgt. Jon Rape, was killed in Kabul, Afghanistan, on August 15th, 2009. He is forever 25. Death anniversaries can be complex and emotional anyways; this year, flashbacks plus the ongoing situation in Afghanistan have made my anxiety and PTSD worse.

    A fellow gold star family member wrote, “Our blood and love are sown into the soil of Afghanistan.” My family and many others have walked a unique path over the past twenty years, from being a kid watching a terrorist attack on TV, watching my brother get on a plane, gun in hand to fight for his country, then watching a soldier lay a folded flag into his widow’s hands.

    We talk about them, not because we’re stuck or because we haven’t moved on, but we talk about them because we are theirs, and they are ours, and no passage of time will ever change that.

    Scribbles & Crumbs

    As we commemorate the 20th anniversary of 9/11 and end the longest war in American history, remember those who paid the ultimate sacrifice.

    And although the battle has ceased, there is still a war to be fought. Many of our soldiers return home with traumatic brain injuries, PTSD, and other mental health needs. More than 20 soldiers commit suicide a day; these staggering numbers outweigh combat deaths by 4x.

    Getting Help & Other Resources

  • 3 Tips For Improving Brain Fog

    3 Tips For Improving Brain Fog

    It’s been a little quiet here lately; life happened. I’ve been busy keeping my ship from sinking, dumping out water while it’s still spilling in.

    Being a wife and mom is hard enough, but adding chronic illness to the mix makes it even harder. I’m the ship with a chronic disease, and holes keep springing with new side effects pouring the water in.

    One issue I’ve had since my open heart surgery has been brain fog. Brain fog can be annoying, frustrating, and embarrassing when you forget something again or can’t recall that word you’re trying to think of.

    Brain fog can cause one or all of these:

    • Fuzzy thinking
    • Problems with short or long term memory
    • Problems with working memory
    • Problems with concentration and focus
    • Problems thinking of the right word or using the right word
    • Problems with numbers or math

    As I’m writing this, I struggle to find my words or remembering where I saw that quote—writer’s block on a whole new level when your words are in a blender inside your mind.

    In the midst of all this, I have found some things that have helped me start a routine to keep my mind working and help ease some of the symptoms. Like I said above, I’m still struggling daily; this is something to do continually.

    Reading is not only a great way to ease stress, but it also helps with memory, along with increasing your vocabulary. You can learn more about reading and memory here.

    Try a new hobby or pick up an old one. We are trying to challenge our brains. Instead of a hobby, I signed up for a free summer college class. I’ve been able to see my hard work paying off. You could also do crossword puzzles, regular puzzles, play strategy games, etc.

    Self-care is so important in managing our mental health and stress. Stress is hard to avoid, mainly when the pressure is caused by your own body failing you. For me, hot Epsom salts baths with my essential oils are a go-to, and I’ve been using Balance, a guided meditation app. If your self-care is exercise, shopping, thrifting, crafting, whatever it is, make time for yourself.

    If you’re curious about which essential oils are good for mental clarity and alertness, you came to the right place. Peppermint, Rosemary, Intune Focus Blend, and Frankincense can also help you regain focus while working. You can learn more here:

    1.) https://www.doterra.com/US/en/wellness-topics-memory

    2.) https://www.doterra.com/US/en/blog/science-research-news-peppermint-essential-oil-and-cognitive-function

    Do you have brain fog or memory issues? I’d love to hear your stories and about the things that have helped you!

  • Parenting With A Chronic Illness

    Parenting With A Chronic Illness

    Guilt: The Worst Symptom Of Chronic Illness

    Being a parent is hard; being a parent with a chronic illness seems impossible some days.

    Mom’s guilt has me all tangled up in her. This monster in my mind is swirling around with all the physical things I can’t do with my children, especially since summer has arrived.

    We eat take-out and effortless meals more often than I would like to admit. My kids have cereal, microwaveable oatmeal, etc., for breakfast. I should be making them balanced healthy meals.

    When my pain flares, I’m not as patient; I’m quicker to snap, and then later, that monster grips me tighter, telling me how I’m failing as a mother.

    Cause and effect. If I even slightly overdo it one day, you can bet your butt I’m going to be in fatigue and flare for days after. It’s the price that must be paid to have memories with my family.

    Then I have those late-night thoughts, wondering if I’ve given my kids my genetic conditions, wondering if they will have to suffer as I have silently.

    I’m not faking being sick; I’m faking being well.

    Chronic illness isn’t just a monster that causes pain, fatigue, and mom guilt. No, this monster steals from you little by little. It slowly steals away pieces of your body, independence, energy, health, family, friends, and then one day; you only recognize the monster that’s stolen so much.

    I don’t write this post for pity; I write this for all the other moms out there feeling the same way I do. The one’s trying to hold back this monster while navigating life and parenthood. I see you.

    I don’t have any magical answers or essential oils to make all these feelings go away, but know you’re not alone. When I’m having a particularly rough day, though, a bit of self-care can go a long way.

    Here’s some of my favorite self-care activities that I enjoy:
    • You can find Epsom salts almost everywhere now, essential oils too, but we don’t use that fake stuff around here. My favorite blends are Geranium and Arborvitae, as well as Deep Blue or Aromatouch for those extra rough days.
    • I love flowers and gardening but, my body revolts at our southern humid, hot as hell weather. So, houseplants. I can get my fingers in the dirt, and it makes ME happy.
    • Even on days that I don’t do anything, I try to get a little bit of sunlight in. Some days get those rays through my open windows, other days, I enjoy front porch sitting, and if things are going good, I might take the kids and dogs for an evening walk.
    • I know it’s hard as a mom but, nothing refills my plate more than finding a cozy spot with my dog and draw, read a book, journal about all the things or sit quietly to re-gather my thoughts. I’ve also really been enjoying Balance, a guided meditation app.
    • Take a nap. Seriously. If your pain and fatigue levels are high, there is nothing wrong with taking a nap. The laundry, dirty dishes, or any other chore won’t go anywhere, promise.
    • Another simple pleasure I love is hot coffee and hot tea, I like iced/cold drinks too but, I prefer how the hot seems to wake up my cold soul.

    If you’re a mom trying to parent with a chronic illness, I hope, if not before now, know that you’re not alone. There aren’t any guidebooks or some hidden secret in defeating our monsters, but as moms, we can come together and share our tips, tricks, offer advice and become battle buddies.

  • The Hidden Toxins On Your Grocery List

    The Hidden Toxins On Your Grocery List

    Goodbye Toxins, Hello Nature

    You’re walking through the grocery store (or browsing online for pick-up items like me), you are going about your normal routine. Then you stumble into the cleaning section with the fragrance section right there and we all love our homes to smell good. So it’s easy to add all the air fresheners, plug-ins, scented candles, scented wax warmers, and dare I say those drug store “essential oils” – which give all essential oils a bad name -to your cart.

    Once your home you spray down your house, light your candles, etc you may realize you have a headache but of course, that’s from you being tired or <insert excuse here>. The reality is that in our attempts to make our home smell good we are releasing hundreds of different toxic chemicals into the air we breathe. The same air our kids, husband, wife, pets, etc are breathing too.

    In a study conducted by the Environmental Protection Agency, they found that the air inside our homes has more pollution than even major, industrialized cities. Additional information here.

    There are better ways to scent your home. Goodbyes don’t always have to be hard, I doubt you’ll even miss those synthetic fragrances. And if your anything like me I found that now I can’t stand the “fake” smell and I’m much more sensitive to the effects.

    The Better Way

    Plants have been used since the beginning of time for medicinal and religious purposes. We can thank Clove for helping numb tooth pain for dental procedures, Yarrow and Clary Sage we’re used during childbirth.

    Centuries of salves, teas, and tinctures uses passed down through the generations. With the help of modern technology we’ve been able to study these plants and make medicines like aspirin, morphine, codeine, opium, and many more.

    Anyone can use the power of nature to improve their home air quality, seriously it’s so easy. DoTerra created the Aroma Essentials Collection bringing together 10 powerhouse essential oils and blends that are tried and true for creating a fresh, clean environment that smells incredible.

    The Aroma Essentials Collection Includes:

    • Peppermint
    • Wild Orange
    • Northern Escape
    • Citrus Bloom
    • Adaptiv
    • Balance
    • Cheer
    • Serenity
    • On Guard
    • Breathe
    • Laluz Diffuser

    Pure essential oils are unadulterated and incredibly potent, so it only requires a few drops of oil. Drops of essential oils go much further than synthetic fragrances. Depending on usage this kit could last 6 months to a year! A whole year without toxic scents wafting through your home should make you feel wonderful. You have taken a huge step in reducing the toxic load to you and your family.

    As a mom with a chronic illness, I don’t need to add anything extra to my toxic load. I’ve used these oils for 5 years now and I’ve seen the power of plants in action, On Guard, for example, smells like Christmas to me but it also helps boost our immune system. In our home, medicinal and western medicine combine- it doesn’t have to be a this or that, but working together can make a bigger impact on our overall health and wellness goals.

  • 5 Ways To Become Your Own Health Advocate

    5 Ways To Become Your Own Health Advocate

    If you would have told me two years ago that I would be sitting here writing about being your own health advocate, I would have probably laughed. I doubt most people even think about this topic, I know I didn’t until I had to become one.

    The Beginning Of My Health Journey:

    What first started as back pain and TMJ, suddenly progressed into chronic pain, edema, high blood pressure, and much more. I had labs and MRIs with great results, then sent to a rheumatologist. At my first visit the doctor kind of shrugged me off, he told me to try Cymbalta and exercise because surely a healthy 29 year old just has a bit of fatigue because she’s a mom and depression can mimic many other illnesses.

    As my symptoms progressed so did my patience, I finally spoke up and voiced my concerns openly and honestly with my doctor. After this conversation he had a much better sense of what was going on with my body and that there was something wrong, we just had to find the right test. Fast forward a few weeks and after a trip to the ER got me a cat scan, they found “inflammation” and told me to follow up with my specialist.

    He got me in to see him on a Monday because of course my ER visit was on a weekend. He walked into the room and said you have an aneurysm and I’m referring you to a cardiothoracic surgeon. The rest of this story can be read here. (This rheumatologist is still my doctor to date, and was a big reason I’m alive)

    Becoming My Own Health Advocate:

    My post-op pacemaker care has been less than stellar, at first I chalked it up to pandemic issues but then when issues arose the doctor was dismissive of my concerns. When I say dismissive, I mean he had an ego the size of Texas and assured me that he knew what he was talking about because he was an engineer. I don’t have a medical degree but, I am knowledgeable about my conditions and had notes/vitals to back me up. Plus I’ve lived in this body going on 32 years, I know when something isn’t right.

    Well, long story short I fired him. I had my local cardiologist refer me to a new electrophysiologist, I was seen quickly and the doctor actually listened to me and with a simple medicine removal my symptoms have improved greatly.

    If your battling health concerns or a care taker for someone, being/having a health advocate is so important. Keep on reading for my top 5 tips to becoming your own health advocate.

    • Be Prepared: Before any doctor’s appointments write down your symptoms, concerns, and any questions you have. It is incredibly easy to get sidetracked and forget to mention something or ask your questions.
    • Be Knowledgeable: I’m not saying you need to go get a medical degree but, once you have a diagnosis it is great to learn what you can about your condition(s) and be proactive in your care plan with your doctors.
    • Speak Up: If you feel like you are not being heard, speak up. Do not be afraid to tell your doctor that they are wrong, Don’t be afraid to get a second, or third opinion.
    • Trust Your Gut: You are the only person who really knows your body. You know when something feels off, you can feel pain- even if it’s invisible. You have lived in your body, your entire life, you know it better than anyone else. When I was having pacemaker issues that the first doctor kept on telling me it was because of low blood pressure. I knew this wasn’t correct, my blood pressure had been stable for months. Trusting my gut and getting a second opinion was the best decision- and now that my issues were addressed I’m feeling much better.
    • Keep A Medical Journal: Keeping a medical journal is extremely helpful, not only can you use it to write down the stuff I mentioned above but this can hold copies of test results, medical records, medication lists, symptom tracker, and more. When I first started my journal I used a binder and page protectors to organize all my information and could take it from doctor to doctor. I now use my Ipad for this but, you can use whatever you have on hand to make your journal.

    Living with a chronic illness (or being a caretaker) can be so hard already, the last thing we should have to worry about is getting decent health care. Have you had doctors dismiss your concerns? I’d love to hear your stories, and I hope my story and tips can help you on your journey.

  • I Guess I’m Lucky Then

    I Guess I’m Lucky Then

    As a kid I knew I always wanted to be a mother, first it was playing with baby dolls then it moved on to watching a baby story on TLC.

    I would often envision my future and couldn’t wait to experience the miracle of child birth. I became a mother young but, looking back now it’s evident that it was in Gods plan.

    2 years ago when my husband and I found out I’d be needing open heart surgery, one of our main concerns -besides my survival- was future children. So we opted for a tissue valve knowing I would need OHS (Open Heart Surgery) in the future to be replaced VS the mechanical valve option which would have required the use of blood thinners for life making pregnancy much riskier.

    Fast forward from having my OHS and getting a pacemaker, I was still having issues with my heart rate, I was diagnosed with a connective tissue disorder and fibromyalgia. (If you’ve not read my OHS story, I also had aortic aneurysm repair)

    My health team was hopeful by a year post op we could talk about family planning so they could get me off of birth control pills. During my 6 month check up the doctors discovered that I had developed another aneurysm right underneath my graft.

    My most recent scans show no growth, thank goodness. But, this discovery plus my on going medical issues meant that family planning wouldn’t be happening. Another pregnancy would be deadly, so surgery was scheduled 11 months after my OHS to remove my Fallopian tubes and a uterine ablation to stop my periods.

    I have had thoughts about how unfair it was that the decision to grow our family was no longer ours. Advice about being thankful for our 2 daughters were well meaning advice but it wasn’t what I wanted to hear. I wanted to have a pity party for myself but, what was that going to accomplish?

    I was sitting on my back steps, it was dark but in the country you can see the stars and the moon so clearly. I cried. I prayed. I let all my emotions out into the universe- to god, and it was so relieving.

    A few weeks passed since that night, my oldest daughter and I were chatting about the connective tissue disorder I have at the kitchen table. As we were discussing my issues VS her vision issues, she’s -11 (20/600) making her legally blind without her glasses.

    Our doctor believes she could possibly have a connective tissue disorder as well, it affecting her eyes. My daughter looked at me and said “ I guess I’m lucky then”. Lucky that she only needs glasses vs heart issues etc. 1 simple sentence from my almost 11 year old, completely changed my mindset.

    It all made sense then. God has blessed us with two amazing daughters which we already knew, but God also had a plan. I had my girls young- if I had waited I might not of ever had the chance to be their mom.

    I guess I’m lucky then, those words were exactly what I needed to help my self let go of the pain I was holding emotionally and gave me a little god wink in the process.

    Images of envelopes with wings in the background with watercolor details. The text in the image says: Tears are prayers too. They travel to God when we can’t speak. Psalm 56:8
  • The last Time

    The last Time

    “Cause you never think that the last time- is the last time. You think there will be more. You think you have forever, but you don’t.”

    This quote stopped me immediately and I re-read it multiple times. Flashes of the “last’s” swirling through my brain like a movie reel.

    The last time I spoke to a loved one, the last time I picked up my youngest daughter, the last time I was normal- instead of living with chronic illness, depression, and anxiety.

    As a teenager, I was introduced to death. In 2005 my cousin was killed in a freak accident at 25, in 2007 I lost my aunt, and both of my grandparents.

    2007/2008 was my senior year in high school, one morning I walked out of our house and due to straight line winds it was destroyed. When I returned home, there was nothing left. I think God was making me stronger for the tragedy that would come next.

    It was July, hot as hell in Tennessee. We were visiting my brother, his wife and my niece before he deployed to Afghanistan again. This was the last time I seen my brother alive. He was KIA on August 15th, 2009- 15 days before his daughter’s first birthday.

    Sgt. Jonathon Travis Rape 04/09/84-08/15/09

    In 2019 I found out after sudden and progressive symptoms- that I was born with a bicuspid aortic valve and had a 4.6 aneurysm, on July 15th I was headed for Open Heart Surgery. My life was saved and I fully believe it was a miracle, but this was also the year that changed everything for me physically.

    Two weeks before my surgery I was cleared to travel with my family to Gulf Shores for vacation. On this trip was the last time I picked up my youngest daughter- I should have soaked it all in. I thought life would return to normal after my surgery but that’s not how my story would play out.

    Following my surgery, I have been diagnosed with a connective tissue disorder and fibromyalgia. It’s been over 2 years since I’ve had a day where I wasn’t in any pain. And I can’t remember the last time I felt truly like myself.

    Picture of me and my youngest daughter.

    I write this, not for pity. I write this to remind myself of the struggles I’ve endured, the strength I didn’t know I had, and to remember that any moment could be the last.

  • Be Mine For Longer: Women’s Heart Health

    Be Mine For Longer: Women’s Heart Health

    February is the month of love. Women and moms everywhere give so much love to others that we often forget to love on ourselves. Taking a shower and running errands alone, while great, isn’t self care. 

    When we think of Women’s health most of us assume that we’ve got it covered, because we have our yearly paps, breast exams/mammograms, and take a multi-vitamin. Most of us are so consumed with everyday life that we fail to stop and listen to our bodies, if we did stop, there’s so much we can learn.

    2 years ago I noticed my body changing, I went to my doctors and at first they all said the same things. It’s normal for a mom to be tired, depression can cause these symptoms you’re having. I was prescribed anti-depression medicines and sent on my way, however as my symptoms progressed I had to learn how to be my own advocate and take control over my health.

    My surgeon told me that I was very in-tune with my body, listening to my instincts and not giving up when doctors dismissed me had saved my life. At 29 years old I discovered I had a bicuspid aortic valve and a 4.9cm aneurysm, I was in complete heart failure. – Check out my Open Heart Surgery Post if you want a more detailed story – 

    Cardiovascular Diseases continue to be a deadly threat for women, The American Heart Association’s Go Red For Women is a platform to bring awareness to Womens heart health.  As a heart patient myself I am passionate about bringing not only awareness to Womens heart health but, also showing how we can incorporate healthy habits plus natural options to better care for our hearts.

    If you’re building a house, one of the first things you do is build a foundation which will hold up your house. The same is true for our bodies, we need a proper foundation to build our way to a healthier you. ( I say “you” as in, collective you, I’m speaking to myself too.) To help build a strong foundation for our health, high quality supplements are a good place to start.

    Meet doTerra’s number one selling product, Life Long Vitality Supplements. Backed by a 30 day money back guarantee these supplements are the building blocks for our foundation and the start of healthier habits.

    These essential oils may also be beneficial:

    Cinnamon Bark and Cassia essential oils can promote healthy circulatory and cardiovascular function, as well as Marjoram and Copaiba. Take 1-2 drops of oil into a veggie capsule and take internally, if heart health is a concern for you. And it should concern you, especially as a woman. You can learn more about heart health and essential oils here.

    Learn more here.

    doTerra’s wellness pyramid is the basis for everyday health, including your heart health. Reducing toxic load. rest and managing stress can be achieved with the Life Long Vitality supplements and essential oils.

    Informed self care is so important, like I mentioned earlier you have to become your own health advocate especially if you feel like something is off in your body. Proactive medical care is important for catching things sooner rather than later, like getting your yearly physical, Pap smear, Mammogram, Colonoscopies, etc can hopefully catch things before they become an even bigger issue.

    When I first started to get sick I felt like a fraud to be preaching a healthy lifestyle with essential oils while my own health was spiraling out of control. I still have the same feelings and insecurities pop up but, I know that my healthcare is better when I incorporate natural alternatives along with traditional medicine. It doesn’t have to be a this or that, but we can mesh them together to take control over our health and our lives.

    This February I challenge you to start building your foundation to a healthy lifestyle and schedule those check-up appointments. I have to remind myself often that I can’t pour from an empty cup.

    Ready for a complete overhaul of your health? Doterra has released a new enrollment kit for just that- The Foundational Habits Enrollment Kit. This kit includes:

    • Chocolate protein powder
    • Doterra fiber
    • Doterra greens
    • Doterra On Guard 5ml- protects against environmental and seasonal threats
    • Doterra Balance 5ml- Creates a sense of calm and tranquility
    • Frankincense 5ml- Supports healthy cellular, immune, nervous, and digestive function when taken internally. When diffused or inhaled it promotes feelings of peace, relaxation, satisfaction and overall wellness.
    • Lemon 5ml- Provides cleansing and digestive benefits and supports healthy respiratory function.
    • Lavender 5ml- Swiss army knife of oils, calms and relaxes when taken internally, use in a bath, massage or inhale/diffuse to ease stress and help sleep.
    • Deep Blue Rub- This is one of my most used products. This rub helps soothe tired and achy muscles.
    • Doterra Lifelong Vitality Pack
    • TerraZyme and PB Assist- Supports digestion and optimizes your gastrointestinal tract.

    There are TONS of enrollment kits so if this one doesn’t work, please reach out. I’d love to help you find the perfect products for your unique needs.

  • But, You Don’t Look Sick?

    But, You Don’t Look Sick?

    My next favorite ”Get better soon!”, well meaning maybe but, that’s not how chronic illness works.

    I’ve seen blog posts on this topic, I’ve seen peoples thoughts on social media, and now have first-hand experience on how many judge-y assholes there are in the world.

    Last year before Covid turned the world upside down, I was sitting at the dollar general – waiting for it to open after dropping the kids off at school. I was in my minivan waiting, parked in a handicap spot close to the door. There were a few others in their cars and some standing by the door.

    As I watched the worker prepare to unlock the doors, I got out of my van and was greeted with ”Looking healthy today” with his head cocked to the side as if he was scorning me for using that parking place. He quickly apologized when I informed him I was a mere 3 months post op from open heart surgery and was still having issues.

    The sorry wasn’t sincere, he got caught being a judgmental ass. This wasn’t my last encounter with peoples whispers and side glances and Im completely confident it will happen again.

    If you’re not familiar with invisible illness, it includes an array of illnesses and diseases such as Multiple Sclerosis, CIDP, Rheumatoid Arthritis, Fibromyalgia, Connective Tissue Disorders, Dysautonomia, and many others. A quick google search can give you even more information on the different types of invisible illnesses.

    Life is chaotic bills need paid, laundry is piling up, the kids have school work, the dog needs food, medicine needs picked up, there’s doctors appointments all time. As mom’s, as parents we know this is all hard. Add in a chronic illness and it becomes even harder, I say this not in comparaion but to remind everyone – even myself that everyone is fighting some sort of battle we know nothing about.

    A new year is coming and with it I wish with my entire broken heart that we could all stop the sudden judgements and just be kind to one another.

  • My Open Heart Surgery Story

    My Open Heart Surgery Story

    You never think it’s going to be you. Almost 2 years ago I was a pretty healthy 29 year old wife and mom of 2. Now at 30.5 I’m an open heart surgery survivor and living with an undiagnosed autoimmune disorder (tests have been done and specialist appointments made but with COVID-19 my appointments have been pushed).

    So, In January 2018 I finally made the time to see my doctor about pretty persistent back pain and TMJ related pain. I’m going to push the fast forward button and skip over the many, many, many doctors appointments and tests plus severely progressing symptoms.

    It was a beautiful April morning when I called my husband at work to tell him I was swollen and having shortness of breath, he came home and took me to our local ER. These next few hours then days almost seem like a blur now. The nurses said you should be so glad that you had that particular ER doc, he loves to do unnecessary scans- he’s known as the scan man. Well the scan man saved my life. He didn’t realize it but, after my rheumatologist got the imaging, that ER doctor had discovered a 4.6cm aneurysm in a seemingly healthy 29 year old.

    The rheumatologist made no haste in setting me up an appointment with a cardio thoracic surgeon, the division chief actually, of the University of Kentucky. As my husband and I walked into his office that first time I never could have prepared myself for the information we were going to hear.

    Congestive heart failure, regurgitating aortic valve, a diseased aortic root. I was dying (literally dying. Not the “I’m dying” joke I’ve said countless times) With one listen of my heart the surgeon looked me in the eyes and said I’d be needing open heart surgery, and that he’d need to crack my chest open to do it. More tests ordered: Nuclear stress test, echocardiogram, and heart cath. The tests confirmed the surgeons thoughts; I had a Bicuspid Aortic Valve, the aneurysm in my aortic root caused the valve to fail, regurgitating blood back into my heart.

    At 5:00am on July 15th, 2019 I walked into UK hospital with my husband, nauseated from the nerves. I had to have the surgery, if not I was going to die, no question about it. I mustered every ounce of bravery I could and never shed a tear until I was almost asleep on the OR table.

    I woke up groggy, intubated. A warm hand touched my cold, pale body, I looked like a corpse. Side effect from the machine that cooled my blood down as it was being pushed through, keeping me alive while my heart was stopped. Coughing is the next thing I remember while what felt like a 3 ft pole was removed from my throat.

    I’ve birthed two children, it didn’t even compare to the pain of having your chest sawed open. Most of the first few day’s are blurred, I’ve pieced together a bit with the help of Josh (he’s my husband). I wish I could say and then I was healed but, that’s not part of my story. My heart wasn’t beating properly, they said I had 3rd degree heart block, which if left un-treated would be fatal. 11 days after my open heart surgery I was wheeled into the heart cath lab and was given a pacemaker to get my heart beating properly again. I’m 100% paced, meaning the pacemaker is running constantly to keep my heart beating.

    As of today, I’m 9 months post-op. My life has changed so dramatically since all this began and knowing my life will never be normal again sure can get a girl down. I’m healing slower than normal, all my doctors believe I have a connective tissue disorder but I fall in the 20% that have gene mutations not yet discovered.

    This waiting, waiting to know what more could be be wrong with me, waiting for treatments. It’s exhausting, it’s frustrating, it’s so many emotions rolled all into one. My body is broken, so many symptoms, it feels like I’m stacking them all up like blocks, eventually the blocks are going to be too high, unbalanced and wobbly then, without warning, it will fall.