A Thanksgiving Miracle

fall-walk

It is Thanksgiving morning. I woke early and padded out of our bedroom quietly in hopes of writing before my early rising Hubs wakes because today is my very favorite.

Thanksgiving is the day when all the things, the leaves, the foods, the home decor are gold, orange, warm and glowy. 

There are 2 nights in my life when God has healed me. No I did not recover completely but He touched me. There was a shift in which I went from severe pain to no pain, from being unable to eat regular food to being able to eat solids. Both of these preceded Thanksgiving.

The medical term for what I experienced is “Spontaneous Remission”, I call it a miracle.

I realize that not everyone who reads my blog believes in God but I hope that as you read this post you might open your thoughts to the idea that there is something bigger out there because what I experienced is real. Plain and simple, these things happened. And to be honest, that reality gives us hope in a messy broken world.

In both cases I was so far beyond what I could handle. In both cases I cried out to God with a completely shattered heart. In fact, in both instances I was so far past my limit that I felt He had forgotten me.

The first time I was 29. I had spent the majority of that summer in the hospital due to a profound onset of Crohn’s disease. I was brave that summer and believed big for healing in the face of excruciating pain. I was fed through a line in my heart and all the days were lonely.

I frequently sat alone at midnight in the cold sterile hospital room, journal in hand trying to make sense of my unthinkable situation. One night I sat with my Bible and journal in sheer heartbreak. I cried out in grief to God. I told Him that I was absolutely at the end, I could go no further, that I needed something, some sign that He cared.

That night a nurse I did not know came into my room and asked if she could pray for me. I collapsed into her arms in tears as she prayed over me. The next morning the nurse was gone and my body felt different. I knew I had been touched by God overnight. For the first time in months I was not in horrific pain. To make that morning even more abnormal, my doctor discharged me home. 

My recent experience with the healing touch of God is similar. I have been fighting a Crohn’s flare since September. The months have been dark, shrouded in pain and hopelessness. My family and I have been back and forth to specialists and hospitals. We frequently wondered if I was going to be admitted.

About a week ago I curled up in our bed with my Bible and journal. I have been acutley aware of how abnormal my past 16 years have been due to ongoing illness and I have felt a mix of humiliation, loss and anger.

The other night I told God that for the first time in my 16 year quest for healing I could feel myself growing bitter and I don’t want that to happen. I begged God for some sign that He sees me, that He has some plan for my life and then I curled up and went to sleep with my Bible in my arms.

The next morning I woke up and my body felt different; I was no longer in pain. As I made our bed my thoughts drifted back to the night when God touched me in 2001. That same peace washed over me and I knew it had happened again. As the morning progressed I found that I was able to eat solid food for the first time in a couple of months and I have been on a steady trajectory forward ever since that night.

Some years the holidays are extra glowy. Today my family will gather and we will have that same feeling we had on Thanksgiving in 2001, when everything seems to be falling back together after it all came undone.

If today is a hard day for you a couple of things that are helpful to me:

  • Get outside — force yourself
  • Check out The Work of Byron Katie
  • Keep putting one foot in front of the other, no matter how hard it is, force yourself
  • Distract yourself with fluffy “feel good” movies or books because this hard time will pass you just need to get through it
  • Every day find 1 thing to be thankful for — even if it is as simple as a blanket

Luke 8:42-47

As Jesus was on his way, the crowds almost crushed him. 

And a woman was there who had been subject to bleeding for twelve years,c but no one could heal her. 

She came up behind him and touched the edge of his cloak, and immediately her bleeding stopped.

“Who touched me?” Jesus asked.

When they all denied it, Peter said, “Master, the people are crowding and pressing against you.”

But Jesus said, “Someone touched me; I know that power has gone out from me.”

Then the woman, seeing that she could not go unnoticed, came trembling and fell at his feet. In the presence of all the people, she told why she had touched him and how she had been instantly healed. 

Then he said to her, “Daughter, your faith has healed you. Go in peace.”


First Ever Medical Study on Efficacy of Autoimmune Protocol Diet for Inflammatory Bowel Disease

Cover Pic

AIP summer meal at Jessica’s house 2015. Photo taken by Bob Ginn

We all have moments that redefine our life’s course. They are the jarring moments when time and events play out in seconds, but feel like a slow motion movie. Those moments that, when we will look back, cause us to refer to life as “before” and “after” the defining event.

The results of the first medical research study on the efficacy of using the Autoimmune Protocol Diet (AIP) for Inflammatory Bowel Disease were recently released.

After reading the report, I felt like I was watching the highlights fom my 2001 hospitalization. Memories flooded my senses…central line feedings through my heart, horrific abdominal pain, endless bleeding. I saw my family sitting bedside pleading with God for healing. I remembered the fierce pain and how it felt to wonder when I would be able to eat or even sip on water again.

One of my college roommates told me about the Specific Carbohydrate Diet and we began the slow process of healing by integrating diet, lifestyle and western medicine. We dug into faith harder than I knew I had the ability to do, we believed that I would heal.

16 years ago I was repeatedly told that there was no connection between diet and gastrointestinal health. Gluten free and Paleo were not popular back then, Whole 30 was not even a thing. It was not cool to make diet modifications and I was judged harshly for the diet I followed. Few people understood. Even people at popular holistic stores criticized my diet.

It was all profoundly crushing to a 29 year old woman who was trying to turn her world right side up again after it had been so completely undone.

I once had a career in healthcare; specifically I worked in research hospitals. I have a great respect for research. It is critical for many reasons. One being that it gives doctors options for their care plans. Without research to support their medical decisions physicians take on huge risk and liability. Another reason is that research provides a way to chart progress. Healing is slow and very messy; it may follow patterns but it does not follow rules and it is different for everyone. In order to know what works, we need ways to chart progress.

The results of this study were more suggestive of the role of diet in healing than the AIP community anticipated.

The authors of the study cite ““Clinical remission was achieved by week 6 by 11/15 (73%) of study participants, and all 11 maintained clinical remission during the maintenance phase of the study. We did not hypothesize, a priori, that clinical remission would be achieved so early (week 6). Indeed, this proportion of participants with active IBD achieving clinical remission by week 6 rivals that of most drug therapies for IBD . . . (Konijeti, et al. 2017)”

This is a tremendous step for the autoimmune community. It opens doors, starts conversations and while it is a small study it provides data for doctors to consider when making their recommendations. I believe that this study is only the beginning and that we are at a time in medicine where more research will begin to explore the use of a healing diet and lifestyle for managing illness.

The link to the full study is here Efficacy of the Autoimmune Protocol Diet for Inflammatory Bowel Disease


Autoimmune Awareness Month 2017

Before MRI

Before an MRI – jgb

 

MARCH Is #AutoimmuneAwarenessMonth.
I also turn 45 this March.
This picture was taken before one of the numerous MRI’s I have undergone since my Autoimmune journey began in 2001. I have had so many MRIs & CT scans that I lost count years ago.
I have had 7 Bone Marrow Biopsies/Aspirations, 1 PET Scan and countless other procedures in the cold, sterile parts of hospitals that most people don’t know exist.
For me, Autoimmune Disease means that when I was 28 I got terribly sick and when I was 29 I landed in the hospital for a prolonged period of time with the diagnosis of Profound Crohn’s Disease and C-Diff.
Autoimmune Disease means getting sick and eventually learning that it does not go away: no matter how strictly you live, nor how strong your faith. There is a hiccup in your immune system.
It means that most people have no clue how many steps I go through daily to live what looks like a normal life and that I will always miss the woman I was who lived without these restrictions.
But it also means the small victories become HUGE Celebrations.
It means that you quickly learn who loves you enough to be there for you when you are rather gross (it’s embarrassing to be gross but sickness does that). However it’s temporary and there are people out there who will still love you on the gross days.
Autoimmune disease means finding a way to live your best life even with scary diagnoses.
It has taken me 16 years. I have a history of Crohn’s, Leukemia, Migraines & Immunodeficiency.
There are days that I run fevers, hurt all over and feel trapped.
But those days have become Few.
After 16 years of putting together a jigsaw puzzle including pieces God has given me from: Modern Medicine, Epigenetics, Functional Medicine, Real Foods, and a Healing Lifestyle I am finally thriving again.
If you are just beginning your Autoimmune journey it is hard but I encourage you to knock on all the doors because you will slowly find your healing path.

Happy, Happy Thanksgiving

fall-walk

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!

jessica-and-chris-fun-day

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

fall-walk-2

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!


Mourning Has Broken

FullSizeRender

 

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.


Healing

IMG_0293

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

10317777_10208879764534500_8005488180526512828_o

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.

IMG_6801

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.

 


Breathing Easy

12301743_10208217860707318_1074218839529379177_n (1)

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.


A Simple Guide to the Paleo Autoimmune Protocol by Eileen Laird — Giveaway!

A Simple Guide To The AIP

I am thrilled to tell you about Eileen Laird’s book, A Simple Guide to the Paleo Autoimmune Protocol. Last year Eileen became a great source of strength and inspiration for me.

For those of you who do not know my story, I am going to provide a brief introduction so that you will understand why and how Eileen was so instrumental in my healing.

I have a history of Crohn’s Disease and Chronic Myelogenous Leukemia, both of which had been quiet and in remission for years until I grew resistant to the chemotherapy which kept my case of leukemia in remission from 2008-2014.

In January 2015, I was placed on a new chemotherapy drug and my GI tract revolted. Even though I was not having a true Crohn’s flare, my body mimicked the symptoms of a flare. I was horrifically sick.

When I started the AIP in January 2015, my intention was not to go on the Autoimmune Protocol and change my life forever; I was simply looking for a way to tolerate the chemotherapy I needed for a leukemia relapse.

Last winter when faced with questions of whether I would be able to continue on the chemotherapy I needed, I decided to apply the lessons I had learned early in my journey with Crohn’s disease about the use of a healing diet to decrease intestinal inflammation. Obviously I would not be able to remove the main gut irritant, the chemotherapy, but I was hoping that my return to a healing diet would counter the inflammation from the chemotherapy.

As I scoured the internet for recipes, a new diet repeatedly came up in my search, the AIP.  I had heard stories of people following the Paleo diet for Crohn’s and frankly, I had dismissed those claims because I did not know enough about the diet. Last January I was desperate; I decided that I had nothing to lose so I tried it. And it worked.

What I did not expect when I went on the AIP is that my other autoimmune symptoms would disappear. In many ways, last year was a series of pinch-me moments as autoimmune symptoms I had grown to live with slipped away: my body temperature was no longer painfully cold, my joints no longer ached, and autoimmune fevers vanished.

2015 granted me time-out to heal after a setback. During my recovery, I read books and blogs about the Autoimmune Protocol; I immersed myself in the AIP online community.

In my search for education and support, I found Eileen’s website, Phoenix Helix. I learned that Eileen follows the AIP and has reversed her symptoms of Rheumatoid Arthritis by 95%. When I read her story, I felt encouraged and hopeful that the AIP would be able to help me.

Then I discovered her podcast and I was inspired exponentially. The podcast interviews allowed me to hear people who had, like me, been through terrifying health crises and regained healthy, full lives by eating real foods and following a healing lifestyle. As I listened to the interviews with patients, scientists and doctors, the support for following the AIP mounted in my mind.

Most people don’t have a year to spend researching books and blogs. Truth be told, finding the time to listen to a podcast once a week can be a luxury given life’s demands. Eileen’s book brings the research together for you. She has taken the rich content and important information available on the Autoimmune Protocol and written it in a way that is easy to understand.

The AIP is a big adjustment which is why this book is an invaluable resource. Through her guidebook, Eileen sets her readers up for success.

Eileen explains which foods are on the healing diet and which are omitted; she also explains the reason behind omissions. She provides steps for when and how to reintroduce foods.

Something else that I really like about this book is that Eileen addresses the AIP lifestyle. It is the natural tendency for us to focus on the diet part of AIP but learning to live a healing lifestyle is equally as important in achieving optimal health.

Eileen covers topics such as circadian rhythms and the importance of sleep, stress reduction, overcoming self sabotage, and gentle detoxification. She teaches the reader how to get support, how to survive a flare, how to troubleshoot if you are not getting results. She provides grocery lists and gives extensive links and resources for recipes, continued education, helpful tips, and connection.

Eileen has generously offered to giveaway a copy of her book! This giveaway is open to both US and International entries. 1 book will be given away: if the winner is in the US, you will receive a paperback copy; if the winner is International, you will receive a PDF copy.

The winner will be selected randomly and announced Sunday January 17. If you enter be sure to check your email inbox next Sunday evening to find out who wins this giveaway.

If you do not want to wait and would like to purchase the book, you may do so by clicking here.

Update: This giveaway is closed. Congratulations to our winner, Laura! 

To enter contest (go through the Rafflecopter link below)

***A Simple Guide to the Paleo Autoimmune Protocol***
https://widget-prime.rafflecopter.com/launch.js

Required:

  1. Check out The Feel Good Days Facebook page (remember to go through the Rafflecopter link located above)

Additional, but not required, ways to enter:

  1. Leave a comment below this blog post about what aspect of Eileen’s guidebook is specifically appealing to you
  2. Follow The Feel Good Days on Twitter (go through the Rafflecopter link located above)
  3. Tweet The Feel Good Days Giveaway of Eileen’s book (go through the Rafflecopter link located above)

A Simple Guide to the Paleo Autoimmune Protocol


Instagram for Support: Tips for Finding Your Healing Community

1000 followers

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