It has been 4 months since my last blog-post.
We celebrate Thanksgiving this week and I am completely healthy.
Two years ago the Hubs and I had just purchased our first house together and I had a leukemia relapse. One year ago I developed a drug-resistant bronchitis/pneumonia which led to a bronchoscopy and a failed IVIG treatment.
Those years blistered with pain and heartache. Each person in our family carried a broken heart.
This year is different. We are happy, we are healed. We are in a season of goodness and celebration!
Last summer I got healthy again and had a very hard time moving forward. I did not know what to do because, what do you do when your life has been thrown so far from center for such a long time? Though it sounds simple, finding yourself and moving forward after life altering crises is actually quite challenging.
In my experience unplugging, taking lots of healing walks, praying, listening to positive podcasts, allowing myself to cry and ask why are necessary steps in moving forward.
When I got sick in 2001 I did not understand any of it. I loved my life prior to illness and I played by the rules. Though I was young and certainly made immature decisions (aka “mistakes”), I was a compassionate and loving person who had a committed relationship to God. I had worked so hard for a career that was budding in my early 20’s. It made no sense that my world would collapse due to illness.
From the very beginning of my journey I prayed that God would use my story to encourage other people who are hurting. I understood that if my life could turn on a dime so could the lives of millions. I hoped that God would put a purpose to the pain I went through because…well, don’t we all want some purpose to come from the most defining moments of our lives?
15 years later, hurting people are inspired by my story and seek me out for suggestions because they are where I once was. This role brings with it much more weight and humility than I ever imagined it would.
As I type this post I have precious people in my mind who are facing mountains, their world is upside down, their families are hurting. My spirit hurts for them and while I cannot provide perfect words to soothe them I do know that healing happens in baby steps and God is faithful.
3 weeks ago during one of my healing walks, our pup and I came across a bench that took me back to younger years. It looked like a bench I would have spent time at when as a camper or a camp counselor. Then God brought to mind the verse I have clung to through the brilliant and brutal times of my life.
“The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.” — Deuteronomy 31:8
He is always right here with me and during the darkest times He picks me up and holds me extra close.
To those of you who are hurting this Thanksgiving, I pray that you can hold on to the hope that what you are facing today will not last forever. Cling to positive words and find strength in gratitude which has been a healing tool in my life.
You can find most of my writings, recipes and follow along with me as I do my best to live a healing lifestyle at my Instagram account dedicated to The Feel Good Days.
Last spring my oncologist predicted that summer would be an easy season for me. While I finalized paperwork from the previous school year I imagined lazy days spent poolside reading novels, kayaking with hubby, cooking yummy meals. I was so excited to get back to writing and blogging.
Yet, before any of the fun could begin I had to come undone. And by undone I mean ugly tears and questions of why.
Over the past 15 years, I have not asked God “why” very many times. But this summer, I sat in puddles of tears and shamelessly cried out for answers.
I have spent 9 of my past 15 years either hospitalized or severely sick with Crohn’s disease or leukemia. That does not include the horrific migraines or striving for mental wellness through these years of adversity.
After an intense 1-1/2 year battle for my health, the first 6 weeks of summer demanded that I heal emotionally.
I took our dog for long walks and slowly found my heartbeat again. I frequently unplugged from social media to still my mind. I limited the amount of news I watched or read because I was too raw to process mass amounts of sadness or fear. I listened to a positive podcast everyday to fill my mind with inspiration and goodness. I talked to confidants and professionals who helped me find a way through the pain, people who could listen without judgment, and gracious they are hard to find but God does supply them.
I have gone through emotional recovery after severe illness multiple times over the past 15 years. You would think I would be a genius at this by now. However, there are some things that I just don’t think we get better at, mourning over loss being one of them.
It hurts horrifically to have illness uproot your life. It is hard to reconcile damages done. I do think the one thing I have gotten better at is recognizing that I am going through stages of healing and that I will come through them but the pain and heartache, the tears remain guttural.
I did not think I would get sick again in my 40’s. The recent leukemia relapse was just as unexpected as the other medical crises that upended my life.
I had hoped my 40’s would be a new decade filled with health. Relapsing in my early 40’s was such a disappointment. I had hoped for a long stretch of uncomplicated days.
19 months after it all started, I am finally better both physically and emotionally.
A few weeks ago our dog and I were in the kitchen when my husband walked in the door after work. Jackson ran over for a pat on the head and then I hugged hubby tightly. I thanked him for standing with me through the grieving season because it was dark and I know that it required much of him. I told him that the grieving, the mourning, the crying is over.
When we got married 6 years, 10 months ago neither of us anticipated that we would be challenged so early in our marriage. I am incredibly proud of my husband and our marriage. We made it through a fierce storm together. And, by the Grace of God, We are entering a new season.
When I wrote my last blog post I was crushed in spirit. I received so many kind messages and I have been too worn down to reply to most of them but I want you to know that your prayers and messages carry me. Thank you.
It has been one month since I wrote that post. I can barely remember the days between then and now, though they were long and seemed to stretch eternal.
After the serum sickness, I recoiled and became very small, absent, empty. I grieved in a way that is required of us after life deals too much hurt.
The past 15 years have been harsh, at times brutal. And life has been intense since late November/early December 2014 when my case of leukemia relapsed.
In March my oncologist gave me an IVIG treatment to boost my immune system because it is wiped out from chemotherapy.
When I got the treatment, I was actually in a getting better stage. I had returned to work in January; our dog and I were walking an hour a day. I was joining other women for yoga and even barre workout classes. It seemed like we were finally getting back to life.
I had a wicked reaction to the IVIG called serum sickness which you can read about here. It was a horrific set-back.
I felt like someone pummeled me right when I was coming up for air sending me back under the water, wiped out, weary and having to fight the current again in order to survive.
The physical pain of the serum sickness and chemical meningitis was devastating; the night at the ER which went so wrong left me feeling stripped of dignity.
When my oncologist called me the morning after my ER trip, she explained serum sickness and that I won’t be having IVIG again. I slept feverishly and fitfully for a couple of days; when I woke up her words became clear to me and my heart cracked wide open in sadness.
That time period is now blurry and void of details other than the sting I felt in my heart and the shallow breaths that accompany severe sadness. I remember PBS was running an Anne of Green Gables marathon that Sunday and I watched it, recalling younger years spent with my sister and my college girlfriends during what was an uncomplicated stage of life.
I returned to work and focused on survival. I worked and I slept. I had become severely iron deficient and was scheduled for an iron infusion. The anemia made everything that was already so hard, extremely complicated.
It felt as though I had a blindfold around my eyes and was being shoved through a thorn-filled maze.
It hurt, I was exhausted and I knew that the only way through it was to go through it. I put one foot in front of the other and did not think past the moment.
The Sunday before my iron infusion fatigue draped heavily over me; I simply could not stay awake. It was a sunny day and my husband was working in the yard, I wanted to join him because I longed to spend time with him. I also knew it would be good for me to be in the sun. He found me in the house with defeat stamped across my face. Tears pooled in my eyes while I told him how badly I wanted to be outside with him.
He chose compassion.
He took my hand and guided me to our bedroom where he wrapped me up in my favorite blanket. He told me to rest, to nap, that I would feel better when I woke up and that he would be right outside.
Tears streamed down my cheeks as I watched him through the window until I fell asleep.
This man, who has never been “sick” who does not understand by experience what it feels like to have your body stop working correctly; this man who is not naturally inclined to extreme patience has been immensely generous and patient and loving towards me. His dreams have also been dashed by my health crisis because it impacts everything from our finances to our ability to socialize to what he has had to witness. He has chosen to love me and to stay committed to me. He breathes words of life into me and treats me gently when he could easily allow resentment to build up toward me. But every day he makes the conscious decision to choose love over resentment. I am amazed.
When I awoke from my nap that Sunday afternoon, I did not feel better, I felt hopeless. I remember standing in our kitchen wondering if all of my good years are over. Then I shook my head and told myself to “stop”. I reminded myself that God has always provided for me. I literally stood in our kitchen and talked to myself “yes, there have been times when I have been in pain and at times it has been profound, but God has always supplied hospitals and medications for me. There have been horrific moments but there has always been an end to those moments”. “There are places in the world where that type of pain relief and medical rescue does not exist. I am grateful that I live in a place where I have been able to have those rescues”.
I expressed gratitude for my husband and his choice to stay faithful to, and supportive of, me during this time which has seemed ruthless.
In my experience, there are stages that are part of healing and I wish I could skip steps and rush through the painful ones but it does not work that way. We have to go through each stage. It is the only way we heal.
I am not crying or grieving anymore. We are laughing again. I am still working full time and my dog and I are taking our daily, one hour walks. I am stretching it out in yoga.
My heart is not yet light again but we are adding play into our lives now that I am medically stable. I know that the light-heartedness will come in time.
I have been through these stages before; it has just been a while since I had to do it. This is not easy.
I recently heard a song that reminded me of the way that God has been with me over the past 15 years. As hard as they have been, He has peppered them with joyful moments too.
The song is really beautiful. I hope it encourages you too, whatever you may be facing.
2 weeks ago, flanked by my husband and father, I went to the Pulmonologist. We had an early morning appointment to get the results from my bronchoscopy.
I was braced to hear hard words from the doctor. I had prepared myself to get a sad report and then muster strength, look for the silver lining and find a way to turn it into good news.
The reason I was in that frame of mind is because that is what Crohn’s Disease, Chronic Migraines and Leukemia have forced me to do for the majority of my adult life.
Looking back over the years, I have been courageous.
Tuesday morning, I was granted a pass. The lung specialist came into our room and did what he probably enjoys doing most: he told me that all 11 biopsies revealed healthy lung tissue. Healthy.
I am writing this blog post early on a Saturday morning. Tears spilled over my cheeks as I typed the word: Healthy.
To be fair, part of the reason for the tears is because I am listening to Adele and it is a confirmed fact that Adele makes people cry.
But Come ON:
…after 15+ years of repeatedly being thrown into hospital beds, excruciating pain, Emergency Rooms, scary diagnoses, frightening procedures…
…after cheering friends’ childbirths while trying to make sense of my childless life riddled by words such as “profoundly ill, hemorrhage, too young for this, blood transfusions, stat, cancer, potential complications, no other options”…
…to hear the word: “Healthy”…
Cue Adele, dammit and let your heart explode!
Cry the kind of tears you cry when All that Was Wrong is Suddenly Right, and it may not make sense, but it Just IS.
I have been breathing easily ever since we left the office of the Pulmonologist 2 weeks ago: off all antibiotics, steroids, inhalers.
It is if as the respiratory complications that crushed me from November-January never happened.
God still works miracles. Most often they don’t seem to match our timeline and in so many ways they don’t even seem fair in this world where too many people suffer horrifically.
However, occasionally, He pulls back the veil and allows us to witness something truly magnificent which goes without explanation. I thank Him for choosing me this time.
Monday my number of Instagram followers went over 1,000. That made me pause and reflect on where I was when I started this account and where I am today.
I started the account last May. At the time I was recovering from a leukemia relapse, I was on a new diet to help my immune system and my spirit was absolutely crushed. Last year’s relapse coupled with the difficulties I had on my new chemotherapy had beaten me harshly.
Despite an amazing amount of love from my husband, family and some treasured friends, I felt gravely alone.
In order to survive, I knew that I needed to connect with people who understood what I was experiencing and feeling.
Instagram is a social media platform, it is a gathering place online. I understood that I could use the hashtag symbol to find people who use Instagram with similar interests as mine. I also understood that friends on my personal Instagram account would not understand my posts about food and health all day, every day. I would not understand either, had I never gotten so sick.
However, when you live with illnesses such as Crohn’s disease, leukemia and chronic migraines it kind of makes sense that your Instagram posts will include a lot of celebratory moments and strategies that you use to overcome daily hurtles.
By creating a separate account dedicated to my health, I created an environment where I could share those images with people who also really understand the awesomeness that comes from learning how to beat an illness.
I named my health-related account after my blog and began to connect with people who follow healing diets to improve autoimmune conditions, I learned how to cook nutrient-dense meals, I met other cancer survivors with similar stories as mine and I have many other people who battle migraines.
Everyday I learn new tips for staying healthy while living with the chronic conditions. Likewise, I have been able to share lessons that I gleaned from the past two decades.
My Instagram community has made me feel loved and accepted, not judged.
Healing comes through community.
And the courage to fight cruel disease can be sparked by compassionate words such as “me too, I understand, this is what helped me”.
As funny as it sounds, God used Instagram to heal my broken heart. Today I am strong again. I am filled with passion for life and I cherish my Instagram community.
I encourage anyone who struggles with illness to search Instagram for possible support and education. You simply type the name of illness, side effects, special diet, etc. directly after the hashtag symbol. Examples include: #Crohns, #PaleoForCrohns #MigraineWarrior #LeukemiaSurvivor and of course, one of my favorites, #GratititudeAttitude.
#Peace #Love #Heal
One year ago my husband and I posed for this picture on Thanksgiving day. What the picture does not reveal is that I was sick and my immediate family was very concerned that I was having a relapse of leukemia.
I was having chronic infections, nose bleeds and I was absolutely exhausted. Out of our desperate wish for me to be healthy, we attributed my fatigue to the fact that my husband and I had moved into our new home the week prior to Thanksgiving.
Even though none of us said the words aloud, we knew that leukemia had found it’s way back into our lives. And no matter how hard I kicked, no matter how hard I cried, no matter how loudly I screamed there was absolutely nothing I could do about it: my body had grown resistant to Gleevec, the chemotherapy which had kept me in remission from 2008-2014. At the time, it felt like God was deaf to our prayers; our hearts were breaking.
In December my oncologist confirmed our concerns. Thankfully my doctors caught the relapse early however I still had symptoms as the leukemia cells became active again. When I went on my new chemotherapy, I seemed to get sicker before I got better due to serious side effects.
This past year required us to be brave.
I can never ever thank my husband enough for the way he treated me during those dark months.
Movies often romanticize illness, producers soften the gross scenes with music and lighting. However, in real life, there is no lovely music or soft filter to make the awful moments less disgusting. They are cold, frightening and isolating. Last year my husband pampered me when I was so sick that I know many people would have walked away.
This year is very different.
Just the other day, in unison, my husband and I said “last year was a blur”. It was a blur of fevers, fear, feelings of hopelessness, broken hearts, nose bleeds, bone crushing pain, bone marrow biopsies and aspirations, meetings with bone marrow transplant teams. It was scary and it all happened so quickly.
I am officially back in remission now and we are in the process of finding center again after having our lives thrown so far from the middle-point.
This stage also requires brevity and unconditional love. We are navigating our way through the fall-out that comes with a health crisis.
Before I got sick, I spent almost 2 decades working as a speech pathologist, primarily in the medical setting. I routinely counseled couples and families as they went through the stages of acute injury through the stage where my husband and I are now: finding normal again after devastation…
From a professional viewpoint, I understand that this is a hard stage. However, my professional knowledge does not make this current stage any easier. Simply put, my husband and I are currently wading through uncharted waters together. The medical bills are huge, we are still learning what I can and can’t quite do yet and we are trying to recover from a level of stress that was, frankly, unimaginable.
If you follow me on Instagram, Facebook or Twitter then you know that I routinely use hashtags #GratitudeAttitude or #AttitudeOfGratitude. I use these because it is a fundamental, conscious way that I live. My parents taught me to do it when I was young and it has helped me through life’s hardest times.
As tremendous as this year is with my remission, there are many parts of my life that are uncertain right now. Thus, I found myself counting my blessings with intention when I went to bed on Thanksgiving.
This was my list:
- Remission and the return of my health
- My husband has loved me unconditionally through this messy year
- Shelter–I have a place to sleep
- God has a plan for my life
I know that if I am practicing intentional gratitude on a holiday when I have every reason in the world to rest easy then there are other people who feel scared, lonely, sick, overwhelmed.
I encourage you to find 1 thing to be grateful for before you go to bed each night. As you begin to notice the beauty around you, your perspective will change. Gratitude is not a cure-all, however it can and will grant courage, joy and success.
What is on your gratitude list this today?
I learned to find peace through being Present during times when I faced pain, uncertainty and fear due to hospitalizations, Crohn’s disease and leukemia.
This lesson helps me through life’s frightening moments.
Right now high levels of fear and sadness prevail across the world due to recent tragedies and scary news of what may happen next.
I encourage you to remember that as long as there is life, beauty exists.
You may have to search hard to find that beauty but it’s there: in the sky, autumn leaves falling, a favorite song.
In order to find life’s beauty we must be Present in our own lives.
I am not suggesting that we abandon all news but I do recommend taking a break to breathe and find the goodness in your personal space.
“Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.”
Every fall, when autumn leaves offer warm shades of gold, red and orange, nostalgia drapes over me.
The fall breeze carries memories from shared moments with friends decades ago, as though they happened yesterday. It is with happiness in my heart, not sadness, that I reminisce and feel gratitude that we got to share that moment in time, those days, those belly laughs.
Today has been one of those perfect fall days. Even better it follows a day of wonderful news: yesterday I found out that I am officially in remission from leukemia.
My good news has sunk in slowly and maybe that is the reason that today has felt so completely fabulous, filled with gratitude for all the love that is in my life, and ever has been in my life.
Ironically, the official news of remission has been sitting on my office desk in front of my face for a week. It came in an envelope from the oncologist. The return address on the envelope was, of course, from the hospital. Being that I had a leukemia relapse last year, we get hospital bills by the dozens these days and I just did not feel like opening this one. We typically look over bills during the weekend so I allowed this one to sit on my desk all week.
Yesterday morning I was sipping on some coffee and decided to bite the bullet and open the bill. Instead of a bill, my labs from the oncologist came out with the words “not detected” and the oncologist had drawn a smiley face beside the absence of the leukemia marker 🙂
I stared at the page and tried to make sense of it all:
- I put my coffee down
- I re-checked the envelope for a bill
- No there was no bill, this was merely a lab
- I re-read the lab: It was only the report of the Absense of the leukemia marker
- The report did read “not detected”
- My oncologist did draw a smiley face
- I smiled and sat alone in my office and thought about how last year when I got the page that said “detected” it was written in all bold, all capital letters and this time, the letters were not bold, nor capital—-> and I thought that it is a shame because this news is every bit as important
- Then I went back to work
Seriously, a bit underwhelming after such a cruel and challenging year of relapse. I think I was just in shock. I felt very happy but I did not call my husband, I did not contact my family, I did not text anyone, I did not post the news. I just sat in silence with my happiness. I never sit with silence (anyone who knows me, or reads this blog, knows that).
But maybe that is where life’s big moments make us act unlike ourselves? Because yesterday’s news, and that moment, was tremendous for me.
I actually did not even mention my remission news to my husband last night when I saw him. The celebration started when I was responding to a friend on an email. She asked how I am doing and I told her, simple as that, it became real. And then I ended the email and I told my husband and he was so happy 🙂
And then this morning I sent a big text to my family and everyone is so happy ❤
And now I am writing the blog post that we all prayed for last year.
And it has almost been a full year.
Last year was unexpected and cruel. At the same time, it was not as cruel as it could have been and I thank God for that. I don’t understand why “bad things happen to good people” and there is that part of me that is now working through survivor’s guilt because there are so many people going through horrific situations right this second.
Last year wrecked me. My 30’s had been a long decade of illness and hospitalizations. My 40’s are new and I did not anticipate a relapse of leukemia at 42. It was not supposed to happen again in my 40’s.
Last year was the 3rd time in the past 14 years that my health has completely crumbled despite my attempts to stay well. And that is a horrible feeling. There is nothing like it, there is no way to describe how it feels to have every “normal” part of life swiped away and it can happen so fast.
When I had leukemia the first time back in 2007, I remember telling my dad “everybody says that thing about how they could walk outside and be hit by a car tomorrow, but they don’t understand what feels like to be so sick that they might actually die”. And I stand by that statement because even now, after being severely ill 3 times in my life, I am starting to forget how fragile all of it felt.
I do know that when I was sick, most of the things that seem important did not matter at all. The things that mattered: Unconditional Love, the ability to be non-judgmental, the ability to be supportive without judgment, the ability to show up, the ability to believe in someone even at their breaking point, the reality that silence hurts more deeply than you can imagine.
I am fiercely proud of the man I married. When we got married 6 years ago, he knew that he was marrying a woman with a history of leukemia and he knew that there was a chance it could relapse. But there is no understanding “potential for relapse” until you are in the middle of it. He loved me through every second and it was ugly, scary, sad, gross. In the movies the producers romanticize illness with music to soften the gross scenes and they show the passage of time in short clips so it is fast; but in real life, there is no romantic music in the background and if anything, the gross moments are so cold and painful that they seem eternal and isolating.
I love him ❤
I am humbled by the amount of unconditional love and support of my parents give to me and to my husband. I am grateful that God directed our steps to buy a cozy house that is literally around the corner from them a few months before my relapse. My heart is full of love exponential when I think of the meals they brought to us and the prayers they prayed; and for the moments that they showed up here, at our house with strength when they were probably crumbling inside, but they knew I needed to see strength in them. And my heart breaks with love when I think of the many times that they have pleaded with God for their daughter’s life.
My heart absolutely overflows with love and devotion for my sister and her doe-like eyes. She has always been the one who can sit in silence and listen. I have still-framed memories of us together over the past 14 years during my health battles. Once again, she showed up to listen again with compassion. I also cherish the memory of holding one another’s hands when the nurse drew her blood to find out if she is a match for me should I need a bone marrow transplant (I pray I never do). She is the person I can laugh and cry with, all in one session, the one who totally understands me and loves me. She is my best friend ❤
I am grateful for my brother-in-law, and with that I pause because he lost his sister to cancer and I often feel a sense of survivor’s guilt that she is not still with us. And I recognized that he has had to work through incredible pain at the loss of her; I am amazed that he has never allowed feelings of jealousy or resentment to accidentally be directed toward me because I think that it would be easy to do that. Instead, he has always reached out in love and joined my sister in supporting me. He is the brother I did not have as a child.
My heart is filled with love and affection (like a huge heart emoji) for my niece and nephew. They both know that they play a tremendous role in my life. They have had to worry about health crises with people they love entirely too much during their youth. It means so much to me that they know how to show up, hold my hand and give me warm hugs. They know how to pray for me and how to love me and how to trust that I will heal. They know that the very best medicine is to make their Aunt laugh, and they do that ❤
I am filled with love and gratitude for the way that my aunt, uncle, cousins and grandmother stayed in the fight for me with their prayers, text messages and emails. They have loved me unconditionally through the tough moments, and brought us the gift of laughter and resilience.
I am grateful for the special things that the family I married into did to show support and love for me.
I am grateful for friendships that were rekindled after decades and for new friendships that were formed over the past year.
Thank you so much to every single person who read my story, who prayed for me, who thought of me, who reached out to me. I pray that God pours special blessings out to you for what you did to me.
I once wrote a blog post about the word redemption and how illness has given me a new appreciation for the word because God has repeatedly redeemed what seemed like my world falling apart for something more beautiful.
I like to end my blog posts with songs and I think that the song My Redeemer Lives is appropriate for this post. I am so happy to be in remission.
To New Beginnings ❤
When I was diagnosed with crohn’s disease 14 years ago, everything stopped.
Ironically I was 29 years old, so it was figuratively and literally the end of an era for me. My 20’s had been magical. They were filled with laughter, friends, first love, and the early years of a successful career.
I am so glad that I got to have that decade.
I celebrated my 30th birthday quietly, at my parent’s house. I was living with them while trying to get into remission from a profound onset of crohn’s disease because I was too sick to take care of myself. I remember the night of my 30th birthday. The sky was clear and I could see the stars and I felt…I felt lonely and displaced.
Everyone with crohn’s or colitis has a story. There are people who don’t have horrible cases but a lot of us have some significant heartbreak in our history, even if we look totally “ok” on the outside.
Before I got sick, I left North Carolina (the state which holds my heart) for 2 reasons:
1. I had the opportunity to work as a speech therapist on a unique brain injury unit in Atlanta; as a professional I was excited to have the opportunity because working with patients with brain injury was my professional passion.
2. My family lives in Atlanta, so I thought it would be nice to live near them.
In retrospect, I think that God must have known that my world was going to fall apart and that I would need to be near my family.
1-1/2 years after I moved from the Carolinas to Atlanta, I collapsed at work and was rushed to the hospital where a nurse later found me rocking back and forth in excruciating pain with a fever of 104.7 (F).
The next morning, my GI doctor told me that I had either crohn’s disease or ulcerative colitis; he said that he was not sure yet but that I had some form of IBD (Inflammatory Bowel Disease).
I did not understand that with his diagnosis, my life had changed on a dime.
I remember lying in that hospital bed in horrific pain with my family at my side. When he said the words crohns or colitis, I thought “that means I can’t eat corn” because at some point in my life I had known a person who could not eat corn due to one of those conditions. That is how removed I was from the moment. I did not put it together: the reason I was laying in the hospital, in excruciating pain, bleeding form my intestines was because of this new diagnosis.
I was hospitalized for the majority of that summer and into the early fall. I had to be fed through a central line in my heart because I could not eat or drink anything by mouth.
My friends were getting married and having babies and I laid in bed, in a big hospital in Atlanta. I stared out the windows at the magnolia trees which were in bloom.
Social media was not really “a thing” back then; actually cell phones were just starting to be something that everyone had. Thus, there were no blogs for me to read. I did not have Facebook, Instagram or Pinterest to distract me.
My days and nights were filled with: an insane amount of pain, lamaze breathing lessons by the nurses to coach me to get through the pain, naps, books, a TV in the corner of the hospital room that played 12 stations. I journaled. I slept with a Bible in my bed and missed my dog. I tried hard to laugh and not cry.
I was very scared and nothing made sense.
In addition to crohns, I also had C-Difficile. The C-Diff was resistant to several rounds of antibiotics. It finally responded to a third round. After it cleared I was left with what the doctors called a “profound onset” of crohn’s disease.
I did what any person would do if he/she was placed in a hospital room with no real social outlet for a prolonged period of time in horrific pain, bleeding from the gut, requiring blood transfusions and being fed through a line in their heart: I examined my life and wondered if I had done something wrong to cause everything to fall apart.
When I was younger, I had an unhealthy relationship with food and often chose “skinny” eating over “healthy” eating. I asked God to forgive me for not taking care of my body, I worked through the process of forgiving myself.
I envisioned days of health returning and I clung to faith that one day I would be able to eat again, that I would live without that horrible pain.
I worked through the feelings that any 29 year old woman goes through when her body goes from being desirable to not working correctly. I felt like damaged goods and like nobody would ever be able to see me as beautiful or desirable again. I don’t have the numbers in front of me, but I think that at one point my weight was down in the 80’s. I remember rumors flying about eating disorders and I remember feeling so sad and hurt by that judgment because I really wanted to be out of pain, I wanted my intestines to stop bleeding and I wanted to be able to eat again.
It is hard to be judged. I had to learn to let go of what everyone was saying or thinking about me.
I was allergic to most of the medications used to treat crohns which meant that I went through allergic reactions and they were scary. They also left me feeling hopeless and concerned that maybe nothing would work.
I remember one particular moment in an ER when I was so incredibly sick. I was in the hospital bed, throwing up and simultaneously passing blood from my intestines. My GI doctor ordered blood transfusions. I then watched him ask my parents if they were willing to let me to fly out of state to one of the country’s top IBD clinics because the Atlanta doctors could not seem to get my case under control. When he asked that question, the look of grief and hopelessness that washed over my parent’s faces penetrated the ER. After they agreed, he said, “I pledge to take care of your daughter and I will”. I was looking at my parents and my doctor from my bed; they still looked sad and serious, but a bit of the grief was relieved with his pledge and at that moment he became a hero to me for helping them.
After that, I was admitted (again) and given blood transfusions but I did not have to fly out of the state. Something changed that time and my body started to calm. I started to get well and it has been a very long road to wellness.
I have always said that if someone who was living well with crohn’s disease had visited me in the hospital, I would have felt so encouraged. There would have been a real person, who was living a full life, for me to look to for tangible hope.
While I can’t be the person to walk into your hospital room, I can tell you that I have spent hours on the floor crawling and screaming in pain unimaginable; I have rushed to the bathroom every 15 minutes only to pass copious amounts of blood from my gut (it is gross and painful). I have had diarrhea so badly that I learned about using Boudreaux’s Butt Paste (by the way, it is totally appropriate to laugh at the name of that, I do, however it works).
When I was 30 and just starting to heal, I went to the grocery store in a nice area of Atlanta and totally lost control of my bowels, in my favorite pair of jeans. #LowPoint (possibly #LOWESTPoint)
I have also
Fallen in love with a man who thinks I am beautiful even though he has seen me at my worst ❤
Had a fairy-tale wedding at a winery ❤
Spent nights laughing until the sun came up ❤
I rarely have trouble with crohn’s anymore ❤
Everyone with IBD is different but this is what has worked for me
- I work at maintaining a great relationship with my GI doctor.
- If I feel a flare coming on, I call the doctor. I learned this the hard way when I was younger; I used to refuse to call the doctor because I did not want to admit that I was about to flare nor did I want to have to go to the hospital. Since I refused to acknowledge what was happening, I often waited too long, and I became an emergency admission to the hospital. Now I know that if symptoms start and I call the doctor, they can usually call something in. If I take what they call in and rest, the flare can usually be averted.
- I take my medications as prescribed. Years ago, I was on high doses of multiple medications but now I am on a very low dose of 1 maintenance medication.
- I follow a healing diet. Gut Health is fundamental in healing any illness but especially an illness that involves the GI tract. For years I followed the Specific Carbohydrate Diet (SCD). Now I follow the Autoimmune Protocol of the Paleo Diet (AIP).
- I am involved in support groups so that I don’t feel alone in my walk toward wellness.
- I have completely changed my lifestyle over the years to decrease stress. At times, that has meant walking away from relationships and even positions at work that were not healthy for me. Those decisions have not always been easy for me. However, when you find that you are constantly in flare mode or being hospitalized repeatedly, you must evaluate your circumstances and identify sources of stress which can be removed. As much as possible, choose environments that encourage you to feel less stressed, even if that means making choices that other people might not understand.
- I have learned to deal with stress in ways that help prevent flares. When I feel overwhelmed, instead of allowing myself to focus on feelings of worry, anxiety, or something I can’t do anything about, I focus on something “fluffy”. When the weight of the world is crashing down on me, I will watch a feel good movie or read a feel good book to help alleviate the stress so that I don’t end up flaring. You must find a way that you can “check-out” of toxic stress.
- I take daily walks. See my previous post on exercise and autoimmune disease.
- I practice yoga. See my previous post on exercise and autoimmune disease.
- I journal: this is a great exercise for getting your emotions outside of yourself (especially those feelings like stress and anxiety which are triggers for flares).
- I get good, quality sleep. Sleep is another fundamental key to healing.
- I don’t compare myself to other people.
- I practice gratitude: throughout the day, I give thanks for even the smallest blessings.
I also eat amazing foods now, without pain. Here are some pics of what I have been eating lately
In my experience, the first few years were the hardest because I went from being totally normal to being dreadfully sick. Doctors had to find medications to get my case under control and I had to learn what it meant to live with an autoimmune disease.
It does get better, life does return to “normal” again, and you stop living in constant pain/crisis mode. My best advice: reach out for encouragement and today’s social media world has made that so easy, especially with Instagram and the use of the #.
Just use #Crohns and you will find a community ready to support you ❤