Kicking off 2018: Happy, Healthy & Resilient

“Even if happiness forgets you a little bit, never completely forget about it.”

– Jacques Prevert

Christmas Day 2017

Christmas Day 2017: Happy, Healthy and Resilient

It is early January and we are wrapping up a dazzling holiday season. For the first time in 4 years I was completely healthy; we were able to go to parties, dine out and even travel.

2014-2017 were almost unbearable. I was home more than 80% of the time fighting leukemia and then immunodeficiency.The days were long and family bolstered my heavy heart reminding me that better times were ahead.

During a time when it seemed that happiness had forgotten me in a much bigger, more agonizing way than ever before, my family refused to let me to forget happiness. 

The silver lining of life’s hard times is that we learn so much through them. 2014-2017 were rife with lessons that I have yet to fully unpack.

One of the fundamental lessons the recent years taught me is the role of mindset in determining our life experience. 

Going into 2014, I thought I understood mindset…

It seemed that years of hospitalizations and procedures for crohn’s disease and leukemia had taught me how to focus my thoughts, how to foster hope when circumstances looked bleak.

I never imagined that I would beat cancer and then be constrained to stay home for years because my immune system was deficient from chemotherapy. Outside of a miracle I will be on that chemotherapy for the rest of my life. To make the situation more dire, I am highly allergicto the only medical treatment available for this type of immunodeficiency.

I have felt completely hopeless and trapped.

Neurologists, psychologists and other specialists who study cognition estimate that between 75-95% of our thoughts are repetitive and that 80-90% of our thoughts are negative. These statistics include everyone; as in people who are out and about in society with all of its distractions. Being at home, feeling profoundly isolated, has demanded that I create systems to take my thoughts captive, to practice mindfulness so that I can move forward and heal instead of staying stuck in sadness.

In addition to developing mindfulness skills, I have become much more attuned to what my body is asking of me and honoring its requests.

I am aware that my body is at a turning point, I can sense that 2018 will be a year of change and that miracles are ahead for me.

I am equally aware that of the role I play in creating space for healing to take place. I am releasing some activities to immerse myself in actives that directly boost my immune system.

The biggest thing that I am letting go of is the Beautycounter business I had for the past 1-1/2 years. I am deeply honored that people believed in me enough to support my business. If you are one of those people, thank you from the bottom of my heart.

I recognize that it is time for me to direct the energy I was using to run that business toward boosting my immune system.

A handful of the actions I take to boost my immune system (some of these are already in practice and some are new)

  • Cooking nutrient dense meals
  • Take EnteraGam — a prescription medical food supplying me with Immunoglobulins (more in a future post)
  • Writing daily
  • Daily exercise
  • Increase social opportunities in small groups or outside (less germ exposure)
  • No screen time 1-2 hours before bed
  • Daily positive podcasts
  • Less time on Facebook because I am spending more time on Instagram(I limit the amount of time I spend on social media)
  • Read more books and less mindless scrolling through social media or emails
  • Currently going through Dr. Caroline Leaf’sSwitch On Your Brain: The Key to Peak Happiness, Thinking, and Health and will do other mindfulness exercises this year

I thought you might enjoy a quick glance at the pictures below. God has brought me through so much these past few years.

Thank you for the support you have given me these past 3 years. It has been intense and I am not sure I could have made it through without you.

I wish each of you a Happy and Healthy New Year

bone marrow room

 

January 10, 2015: the 6th of 7 bone marrow biopsies/aspirations I have had. This was the most painful and traumatic of the 7. It was a crushing day. I later found out that leukemia had relapse.

 

bronchoscopy january 2015

 

 

 

January 18, 2016: After a prolonged, severe respiratory infection I had a bronchospy to rule out some scary stuff. This was such a sad time.

 

January 4, 2017

January 4, 2017 I was officially diagnosed with Immunodeficiency from chemotherapy. Life Altering and crushing.

 

Christmas at Fishers Perdido Key 2017

Happy, Healthy and Resilient the Hubs and I got to travel to the beach during Christmas of 2017!


Happy, Happy Thanksgiving

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Autumn Gold Leaves — JGB

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!

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Chris and Jessica Historic Roswell

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

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Reflections — JGB

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.

Happy Thanksgiving!


Healing

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An old Family Photo–We are Currently Healing

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.

 


Complications

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March 9, 2016 IVIG (hopeful)

If you follow me on Instagram or if you are a personal friend then you know that 10 days ago my world imploded. And with the collapse of my health, so went the ground from under us. At least that is how it felt.

It was was ugly, profoundly painful, frightening and sad.

Wednesday, March 9th, I had an infusion called an IVIG treatment. Simply, IVIG is an intravenous method of boosting a patient’s immune system with a mixture of plasma from mass donors.

It works for wonders for many people, several of whom I know.

However, when it goes wrong, it can go very wrong. And that is what happened with me.

I got the treatment because my immune system is severely suppressed. Our immune systems are made up of different types of cells and antibodies. Most people understand that White Blood Cells (WBC) are part of our immune system. In my case, my WBC have not always been reliable because of the leukemia. Now that the leukemia is in remission my WBC count is healthy so that part of my immune system is working well.

Another critical part of our immune system consists of antibodies which fight off infections and viruses. Two of these are Immunoglobulin G (IGG) and Immunoglobulin A (IGA). My IGG level is 386 (normal levels are 694-1618) and my IGA is 36 (normal is 81-463).

That part of my immune system is terribly low and it is why I was unable to fight off the respiratory infection from November through January.

The chemotherapy I take is doing it’s job by keeping leukemia in remission. Unfortunately, it has wiped out my immune system and left me wide open to viruses and infections. For this reason, even though I am back in remission, I usually have to stay at home to avoid germs.

I have been home for the majority of the past 1-1/2 years and I am lonely. You would be too.

One way that people with suppressed IGG levels thrive is by boosting their immune systems through IVIG treatments.

My oncologist was reluctant to try IVIG with me because she was concerned that I would have a severe reaction. However, now that I am in remission from leukemia, I have started to re-enter the community. With my re-entry, I have occasionally had the initial symptoms of respiratory illness again. Recently, when I became symptomatic, my oncologist decided that we needed to try the IVIG.

Going into the procedure I knew that I was at risk for complications because I have a history of migraines.

According to the site nufactor.com, “serious side effects can include acute renal failure, thrombosis, Stevens-Johnson syndrome, serum sickness, aseptic meningitis and anaphylaxis. ***The most severe form of IG-related headache comes from aseptic meningitis, and in fact, patients with a history of migraines appear to be more susceptible to aseptic meningitis. Symptoms, which are severe and similar to meningitis, usually begin a few hours after treatment but can occur up to two days later. They can include severe headache, photo sensitivity, chills, nausea, vomiting, fever and painful eye movement***.”

I hoped and prayed that I would not have adverse effects. However, over the past 15+ years I have learned that God’s answers to my prayers are not always the responses I wish for; nor do they typically play out on my timeline.

Frankly, I don’t understand (fade to me crying)…

The morning of my infusion, my oncologist gave me a prescription for pain medication just in case I started to feel poorly. 24 hours later, not only did I feel poorly, I became wicked sick with the severe side effects of serum sickness.

I was working via telepractice and my headache escalated into a pulsating migraine. The pain was so intense that I was unable to formulate thoughts, words or sentences.

I cancelled my last client. I took Imitrex, pain medication, antihistamine, nausea medication. I lay on our bed with my head on ice packs. My lips began to swell, my eyes turned a glassy shade of shade of pink. Light felt like sharp glass causing me to squint and ultimately close my eyes altogether. My body shook with a low grade fever. My were neck and back were immobilized by pain. By the time I realized that this was more than a migraine, the office of my oncologist was closed.

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March 10th (Serum Sickness)

 

When I called the cancer center, the paging operator put me through to the oncologist on call. Gratefully he knew exactly what was happening to me. With a calm and compassionate tone, he directed me to go to the ER where he was working that night. I was to tell the ER staff to page him and he would give them instructions on how to treat me; he would tell them how to make the horrific reaction stop.

My husband drove me to the ER where we stood in a long registration line and were told that there would be a 3-1/2 to 5 hour wait. I was in a 9/10 level of pain.

When you are in that much pain, you don’t care what you look or sound like. Due to my medical history, I have been at that pain level more than once; the response is primal.

I held my head in my hands and sobbed, I rocked back and forth, I prayed nonsensically, I begged for help, I clawed at my hair and at my husband.

Since my chief complaint was severe headache, a nurse did look at me while we were in the registration line; he checked my facial symmetry to rule out signs of a stroke. I begged him to page the oncologist as I had been instructed. He brought me a wheelchair and reminded us that there was a 3-1/2 to 5 hour wait. There was no acknowledgment of my plea for him to page the oncologist.

When we checked in, tears streaming down my face, I asked the woman at the registration desk to please page the oncologist. With no response to my mention of the oncologist, she told us that there was a 3-1/2 to 5 hour wait. My husband wheeled me to a remote corner where I continued to claw and sob and pray and rock. The pain was horrific.

This was not my worst ER experience. I have been through so much worse, specifically with Crohn’s disease. But the fact that I have been through worse does not diminish that what I went through 10 days ago was almost too much to bear and I feel defeated.

Because I have been both a healthcare provider and a patient for the majority of my adult life I am a forgiving patient. The past 20 years have taught me that even under the best circumstances things can go wrong in the hospital; I have been on both sides of that coin. There are things that went very wrong 15 years ago when I got Crohn’s disease, 9 years ago when I got leukemia and last Thursday night when I had a serum sickness reaction to an infusion that could have sent me into shock or death.

From the moment we got to the ER, I followed directions and told all staff we encountered to page the oncologist on call. After telling 5 people, one nurse finally heard me. She was not even my nurse. She was the nurse who had been sent to me after my first nurse could not get my veins to thread around an IV needle. For various reasons veins will blow out, roll and refuse to thread. This is frustrating for nurses as they need to get IV’s into their patients so they can get labs, fluids and medications started. Thursday night, I was dehydrated and my already small veins, which have been scarred from years of IV’s, refused to cooperate for the first nurse.

I have been through all of this so many times over the past 15 years. During some hospitalizations, my veins have been so worn out that I have been reserved for the IV team; their job is to find veins in the most complicated patients. I know what it is like to have a line inserted into my heart because all the other veins just won’t behave adequately anymore.  And I know what it is like to have a nurse in an ER dig through bleeding skin in a search of veins that refuse to thread despite my desperate pleas to stop.

Understandably, my nurse was stressed; it was a long and  hectic night in the ER. But in her pursuit of my veins, I felt like she forgot that there was an actual person attached to the bleeding arms in her hands. Her level of annoyance with my veins with palpable. She finally left the room in what was later described by another staff member as a mess: needles on the counters, blood on my arms and the sheets. I felt stripped of dignity.

Something that is very hard about being a patient is that when your body is not working correctly, when you are the source of frustration, you feel guilty. Regardless of how much pain you are in, you still feel responsible for the stress of everyone around you.

That nurse did however send a more experienced nurse to my bedside who sat calmly with me. The second nurse spoke in a soothing voice. My veins relaxed for her and she threaded one without pointlessly shredding skin. She cleaned the blood that the other nurse had left behind. I told her about the oncologist on call and she expressed anger when she learned that nobody had paged him. She stepped outside the curtain of my ER room and we heard her page the oncologist. Within minutes, he returned her page and she came back to my room with a plan.

That night, I watched my heart-rate escalate from the 60’s through the 70’s, 80’s, into the 90’s and occasionally drop down to the 40’s. While I was not the most complicated patient in the ER, I was in distress. Even though the staff knew that I was having a serious reaction to an infusion and they followed the protocol provided by the oncologist, they continued to speak to me as a migraine patient because I have a history of migraines.

My husband found sheets for me, he stroked my head. He gave me ice chips. He rubbed my neck.

Some relief came late that night when the oncologist’s protocol was put into practice: IV steroids and pain medication. Even with the protocol, I left the ER in a 5/9 level of pain but that was certainly better than a 9/10. More than anything, I was terrified that the medication would wear off and the the 9/10 pain level would return.

The doctor sent me home with a prescription for oral prednisone which I took with antihistamine and pain medication for a few days.

I slept hard the first 2 days after my ER visit. My face was white and swollen. My sleep was fitful and I was drenched in sweat. It was the type of sleep that accompanies the breaking of fever. I remember my phone ringing, texts coming through; everything sounded so far away and I was too exhausted to respond.

When I finally did begin to wake up, my heart cracked wide open in sadness. My oncologist had called me and explained that I had Serum Sickness.

“Serum sickness is a reaction that is similar to an allergy. The immune system reacts to medications that contain proteins used to treat immune conditions. Or it can react to antiserum, the liquid part of blood that contains antibodies given to a person to help protect them against germs or poisonous substances.” –Medline Plus

Serum sickness can cause a person to go into anaphylactic shock, it can cause death. It is a serious complication and I will not be able to have this treatment again.

Everyone has really hard times and I know that my personal tragedy just that: my personal tragedy. I also know that I have got to move forward however I am having a very hard time doing it this time.

Five days after my ER trip I turned 44. This has been a difficult birthday for me. I am trying to make peace with the reality that despite my efforts to be healthy, I have been sick for many of my adult years.

15 years ago I had a profound onset of Crohn’s disease. I remember the hospitalizations and pain and procedures. I remember mustering courage and praying and sleeping with a Bible in my bed.

I was told that I was fortunate because I was getting my “thing” out of the way early; people told me that everyone has a “thing” (crisis) and I was getting mine as a young adult which would leave me with a long and healthy life. I took hope in that. I held onto the idea that there would be years of health ahead of me.

And there have been short bouts of normalcy but for the most part, I have been in a battle for health ever since I got Crohn’s 15 years ago.

And I am tired.

Writing usually helps me sort through my emotions and I typically end my blog posts in gratitude or even with an inspirational thought. But I can’t seem to find it this time. Instead, all I can think to do is to ask you to please pray for me. I am so tired.  Thank you.

 


Remission from Leukemia

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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:

  1. I put my coffee down
  2. I re-checked the envelope for a bill
  3. No there was no bill, this was merely a lab
  4. I re-read the lab: It was only the report of the Absense of the leukemia marker
  5. The report did read “not detected”
  6. My oncologist did draw a smiley face
  7. 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
  8. 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 ❤

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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.

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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 ❤

bone marrow bx 7

p and r 40th birthday party

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.

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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 ❤

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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 ❤

 

 

 


A Crohn’s Disease Pep Talk (for Newbies or for When You Are Flaring)

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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

Healed ❤

Dated ❤

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 ❤

Traveled ❤

Spent nights laughing until the sun came up ❤

and

I rarely have trouble with crohn’s anymore ❤

Everyone with IBD is different but this is what has worked for me

  1. I work at maintaining a great relationship with my GI doctor.
  2. 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.
  3. 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.
  4. 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).
  5. I am involved in support groups so that I don’t feel alone in my walk toward wellness.
  6. 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.
  7. 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.
  8. I take daily walks. See my previous post on exercise and autoimmune disease.
  9. I practice yoga. See my previous post on exercise and autoimmune disease.
  10. 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).
  11. I get good, quality sleep. Sleep is another fundamental key to healing. 
  12. I don’t compare myself to other people.
  13. 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

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Chicken de Provence

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Filet and sauteed Kale and Grapes

 

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Mexican Hot Chocolate (from Down South Paleo cookbook)

 

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Pancakes from Paleo Down South cookbook

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My Pumpkin Spice Latte

Migraine Friendly, Nightshade-Free Potato Salad

Grilled Chicken Thighs with My Migraine Friendly, Nightshade-Free Potato Salad

Friday Funday milkshake

My Friday Funday milkshake

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Cherry Pie Based on Recipe from Grazed and Enthused Website

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One of my favorite Healing Soup Bowls

 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 ❤


My Personal Take on Blood Cancer Awareness Month

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Sistah and Jessica Bone Marrow Biopsy 7

If you are one of my regular readers than you know that I have a history of chronic mylogenous leukemia (CML) and that I had an unexpected relapse last year when I grew resistant to my chemotherapy.

The posts on this blog dating from late November through April/May and even into June chronicle dark days marked by pain.

Two weeks ago, Hubby and I celebrated our 6th wedding anniversary and we are now embarking on my favorite season, fall.

This is when my health began to unravel last year.

Because last year was cruel and every day seemed to hold exclamation points of tears, fevers, bone pain and blood it is very hard not to be a tiny bit afraid of what lies ahead this year. 

As we note the passing of days, we both find ourselves trying to place events. When I say “I am so glad this is not last year” he will say “you know, you were actually already starting to get sick right now…you were tired…”…and we start to piece the ugly, messy puzzle together.

I see my oncologist this Friday and will get my latest numbers, the markers which indicate whether or not the CML is in remission. I feel well and I believe that I am in remission. However,  there is a nervousness that I think almost anyone would feel given the circumstances.

Last year was hard and scary and I don’t want life to unravel again. It seems like my life has unraveled too many times because of crohn’s and leukemia. I hope that I get a great report on Friday. And I pray that I get great reports for decades to come. 

This month is blood cancer awareness month and this morning I saw a cute parody video that I am going to share below.


Never Forget 9/11

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photo credit google images

The older I get, there are fewer mornings that I wake totally oriented as to which day it is. 

9/11 is one of those mornings when I wake and orientation comes quickly followed by a sense of sadness and images from the day that “the world stopped turning”.

If you ask someone “where were you?” we all have stories, vivid memories of where we stood when we heard the news, where we went to watch it and how our individual worlds fell apart while we watched people–yes People–Cross themselves, hold hands and jump from burning buildings.

I had been hospitalized that summer for what was called a profound onset of crohns disease, I had been fed through a central line, which is an IV that went into my heart. In August, the doctors had tried to discharge me but I was too sick and went right back into the hospital.

A couple of days before 9/11, I was successfully discharged to my parent’s house. The central line had been removed, I was able to take tiny bites of food and small sips of liquid. We were rejoicing. It was a time of new beginnings for us.

The morning of 9/11, I had spoken with sistah on the phone. She, her husband and my niece were on their way to my parent’s house to visit. I was telling sistah that she was going to be so proud of me, that I could eat a little bit, that I was not running fevers. We were so happy. The sky was blue, it was slightly crisp and cool outside.

After my sister and I hung up the phone, I was in my parent’s living room watching Good Morning America. I saw one plane hit the first tower and called my mother into the room. Then the 2nd plane hit. My Aunt called to talk to my mother and the day unfolded.

Sistah, her husband and my niece arrived. My father was home. We were unable to talk. We sat, horrified watching the news. I remember trying so hard to not cry because I knew that it was important to not get emotional. By that point, I had learned that emotions could cause my newly diagnosed crohn’s to send me back to the hospital.

I started getting sick again around midnight. I was nauseated and I had a fever, I took tylenol and prayed that I would be ok. At some point, around 4:00 AM, I ran to the bathroom where I was throwing up, passing intestinal blood and then passed out. On my way to the floor, I yelled a faint “help me” and my niece who was a toddler at the time sat up in her bed and said “Aunt Jessie”.

Sistah, my brother-in-law and my niece came to rescue me from an absolutely foul scene in the restroom. Around 5:00 AM, my GI doctor told me that we needed to come back to the ER so that I could be re-admitted to the hospital. I was so fragile and I remember that my sister helped me shower before going to the hospital as I knew that once I was admitted, a shower would not happen. My baby sister cleaned up before my hospitalization. 

My family took me to the ER where I was re-admitted to the hospital and put on large amounts of steroids.

I sat in my small hospital bed with no distraction as every channel on the TV had images of terror and news anchors kept repeating that Atlanta (where I was hospitalized) was a target city.

It was all so horrifically sad (sad is not the word). I don’t think that there is a word for 9/11, not a word to do it justice. Watching the tragedy unfold, there is not a word for what happened that day.

#NeverForget


Today, Right now, Memories from Music

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Me – a long time ago 🙂

I am sitting outside on our screened porch, writing, and listening to some of my favorite songs from over the years.

At 43, I have to say that my favorite decade for music is the 1990’s. For me it brings with it whimsical memories of graduate school, my first job, crushes and first loves.

The 1990’s were my decade to be a young, successful adult with many carefree days. I had not gotten sick yet and I am so grateful that I got to have that decade.

…And, come on–the music of the 90’s is ~Amazing~

If you are not my age and don’t know the band Better than Ezra…here is a taste (I must have listened to this song over a million times 17 or 18 years ago!) 🙂

 


Cake, Chronic Pain and Dignity

The other day I watched the trailer to the movie Cake in which Jennifer Aniston portrays a woman who lives in chronic pain. I watched, held my breath and burst into tears at the end of the trailer when Aniston says, “I am in…a lot of pain ” and one of the therapists who is working with her says “do you want to get better, really?”… “i do”…

I don’t know the entire story line of the movie. I assume that my path is different than that of her character. However our journeys are similar that I understand the what is required to answer the question, “do you want to get better, really?”.

It has taken me 2 decades, horrific amounts of pain, and humiliating moments of being treated poorly to really understand that question.

Yes, I do really want to get better. I am working as hard as I can to heal.

The Washington Post reports that it is estimated that over 100 million people in America suffer from chronic pain. That is a lot of people and chances are, you know a person who is fighting the silent battle.

It is such an easy thing to judge because pain is one of those things that all of us have experienced but once it stops, we forget how awful it really feels. When you live with chronic pain, you feel absolutely horrible for months, years without any significant relief.

This morning I read 2 articles which I wanted to share because they are helpful in understanding chronic pain.

This first article offers a good, easy to understand education on exactly what chronic pain is and it also offers a lot of HOPE for how a person can get better.

This second article offers some very helpful and realistic suggestions on how to interact with a person who is battling chronic pain.

In my experience, the episodes of pain have waxed and waned over the past 20 years.

And overall, I am much better because I have learned how to manage the pain.

However it has taken me 2 decades to learn to manage chronic pain (and I am still learning). It is a very real condition and if you do not deal with it from the inside out, from head to toe, from day to night; if you don’t change your lifestyle and address it–it will destroy you and your relationships.

You can get better.

Aside from wanting to get better, the biggest start to getting better usually comes from another person believing in you.

Which is why I think that it is crucial for society to understand how real and prevalent chronic pain is. If people can find the ability to show compassion and offer dignity vs. judgment, it can help a person come out from under chronic pain. It is a slow process and requires immense patience.

That usually means that a group of people will be part of the care-taking because it is all too much for one person.

The other thing that is really, really important is that the person in pain needs to be seeing good doctors. When I have been in pain, we have always made certain that a family member or friend has accompanied me to doctor appointments because illness makes it impossible to hear everything. In addition, the doctors benefit from having a 3rd person in the room to validate experiences.

If a person does not have friends or family available, hospitals and communities do offer advocates and/or caregivers that will attend physician appointments with a patient.

I’m a big believer in therapy. Living with crohn’s disease, leukemia and chronic migraines would be impossible if I had not had times when I talked to people who are trained in grief counseling.

Steering a person who is living in chronic pain toward therapy and good physicians is tricky because you don’t want to come off as judgmental but it is possible if you win their trust by loving them through the messiness of it all.

Even though chronic pain is difficult to understand, if you do know someone who battles it, pray that you will have compassion and wisdom with that person. Pray that you will know how to offer dignity to them.

This is the thing with chronic pain–it is so embarrassing. Because I have lived with it, I have met so many other people who live with it. Every person that I have met in this circle has confessed that they also feel humiliated and ashamed for being a burden to so many people.

I can’t tell you what works for everyone but I know that giving a person dignity, giving them patience and making them feel like their life matters goes a tremendous way towards their healing.