Sometimes God Really Does Speak…

 

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I focused on BETTER DAYS when I was sick like our wedding anniversary at the North GA Wineries

 

I woke up early Thanksgiving morning and wrote a blog post giving thanks to God for healing me. Later that day I started to feel chilled and crummy.  Really? Really God?

Friday we were supposed to have my husband’s kids and grand kids over to celebrate Thanksgiving; instead I donned a hospital mask and The Hubs and I headed to urgent care.

My heart was on the floor

During the month of October I consistently wore hospital masks when I went out in public to protect myself against the bugs because I have developed immunodeficiency from chemotherapy.

 

Mask

NOT my favorite look

 

Yet despite the precautions I took, there we sat. If this had been an isolated event my spirit would not have been crushed but I have been in and out of hospitals and ER’s for 16 years.

The past few weeks were a blur of blue lips, inhalers, antibiotics, steroids and sleeping with my Bible in my bed. It was incredibly difficult to breathe and I wondered if this was the end of my journey.

My husband, parents and sister’s family poured life giving words over me. I forced myself to press into gratitude for seemingly small things: the soft blanket my sister gave me 2 years ago, the pretty trees outside our window, our dog, our peaceful home, my family’s unconditional love.

One night I threw a magnificent pity party for myself. I sat in our bed with my journal and Bible in my lap, tears streaming down my face and cried out to God. And this time I heard His voice in reply. It was not an audible voice but it was clear and spoke directly to my heart, not the words I would have picked.

I cried something along the woeful lines of “all these years my friends have grown families and careers and the only thing that has been consistent in my life is that I have been sick for 16 years”...

I heard “And I have been there”.

I got quiet because, well I wanted to wallow in pity and what do you say when you hear that truth bomb?

I was like “well yes, but still…”

I heard “And your family has been there” “And you have had shelter”.

I smiled faintly and said, “OK. You win”.

Then I curled up with my Bible and went to sleep.

It was not smooth sailing after that night. In fact the weeks were riddled with complication and heartbreak as I crawled through mud to regain health.

I often think of those words God gave me that night to calm my broken heart. Immunodeficiency with no end in sight does not seem fair and it can feel frightening. But those words were peaceful, true and gentle in the midst of my distress.

My goal was to be well by Christmas and I am happy to say that I will meet that goal. I am also believing big for miracles in 2018.

*For the record — the past 16 years have actually been filled with incredible experiences. Yes illness has been a part of my story, but not all of it.

“Call upon Me in your day of trouble; I shall rescue you, and you will honor Me.”

–Psalm 50:15

 


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.

 


Breathing Easy

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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.


Trying to Breathe

 

 

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Bronchoscopy January 18, 2016

 

Tears were shed last week. At times, I sounded like a wounded animal and while that is not glamorous, it is real.

I also had moments of brevity and strength and I am proud of myself for those moments; many people would simply not be able to discuss bone marrow transplants and the potential collapse of life as we know it.

I have been extremely sick since early November with antibiotic-resistant bronchitis/pneumonia. In November, I required 4 antibiotics, a breathing treatment and an inhaler to get well. December granted me a brief reprieve from the respiratory infection but I was still fighting for health through the holidays.

On January 2, the respiratory infection came back with a vengeance. It was much worse this time; the antibiotics which worked in November did nothing to clear the January infection. After multiple medication fails, I was placed on a very strong antibiotic, one that clears infections in most people. Even that very strong antibiotic did not do much for me until a steroid pack as well as an inhaler (which also has a steroid) were added.

My past success with immune boosters such as zinc, vitamin C, Oil of Oregano, super-foods, etcetera did not help me.

Last Monday my Oncologist gave me the choice to go to the ER or to her office where she would see me as an emergency work-in.

I have an Awesome Oncologist. She offers a sense of calm even in the worst of situations thus I chose her office, I wanted to see her and hear her peaceful voice. My father drove me to the hospital.

Many vials of blood were drawn so that she could run a myriad of tests. My initial blood-work that was available to her that day perplexed her because other than anemia, my CBC revealed a healthy white blood cell count, red blood cell count, healthy platelets. If the leukemia was back, most likely there would be an abnormality on my CBC. Of course there are much deeper tests to look for leukemia, but from the initial blood-work, it looks like I am still in remission; my chemotherapy is doing it’s job.

My Oncologist decided to send me to a Pulmonologist. She said that she could continue to prescribe antibiotics and chest x-rays but she wanted a lung specialist to look at me.

My father and I went to the waiting room and listened to her receptionist try to make an appointment with one of the lung specialists from the pulmonary group. We learned that their first available appointment was 2 weeks out; my oncologist said something and suddenly I was on their schedule for 8:00 AM the following morning.

Something I have learned over the past 15 years: when you are an emergency case, the doctors will find a slot for you. If they can’t, they will send you to the ER where they will see you and often admit you. We were grateful for the 8:00 AM appointment.

Thankfully, Dad drove me to the appointment with the lung specialist because I only “heard” about 50% of what was said; later my father was able to fill in the blank spaces for my family and me.

We are impressed with the Pulmonologist. He is knowledgeable, skilled, and has an excellent demeanor. He also has the gift of compassion.

There have been so many doctors over the past 15 years. The doctors who have the gift of compassion stand out from the others. It is easy to appreciate a person when they are vibrant, when they have on nice (clean) clothes and look their best but it goes against human nature to express appreciation and respect for a person when they are sick, dressed poorly and completely undone. Compassion is a gift, you can’t teach that to a doctor, they either have it or they don’t.

The Pulmonologist looked at my chest x-ray and the CT scan that was taken last March when I got pneumonia (2 months after being on my new chemotherapy).

He then began to explain something that crushed us. The chemotherapy I take is in a class of drugs which can cause pneumonia.

We had known that. However we thought that it was because it suppressed my immune system. We misunderstood…

I know that I will explain this incorrectly because I still don’t completely understand it. Apparently this drug can cause a chemical pneumonia in which there are little pockets of fluid throughout my lungs caused by a response to the chemotherapy.

My doctor said that the pattern on last March’s CT scan are suggestive of that chemical pneumonia and his concern is further supported by the fact that I did not respond to antibiotics, but did respond to steroids.

If this is the case, I will have to come off of the chemical. In my situation that means that I will have to come off of the chemotherapy that keeps my case of leukemia in remission.

At that point in our conversation, tears spilled over my cheeks and I said, “I would have to have a bone marrow transplant”.

He let me cry. He gave me that dignity. He did not belittle my pain or sadness. In fact, when he went to speak, I saw him swallow his own tears as he steered the conversation in a direction that had order, which is what I needed.

I thought of the many times when I used to work in hospitals and had to deliver hard news to patients and families. I used to watch them crumble and it hurt because, as humans, we share the common thread of understanding pain. I remember swallowing back tears knowing that I had to stay strong so that my patients could look to me for leadership.

My doctor did that for me.

He gave me a few minutes to cry and then gently guided the conversation a few steps away from the transplant topic.

He explained that we will take things 1 step at a time: there would be another chest CT. There would be a bronchoscopy with lung biopsies. The biopsies will reveal what is happening in my lungs. The biopsies will confirm whether or not this is an infection or if it is a response to my chemo.

During the moments in which he explained the next steps, I was able me to gather my emotions.

I nodded my head and verbalized my understanding.

My father said that the doctor made a statement that grabbed his attention. I really don’t remember much of what was said. Apparently the doctor said that his suspicion is that “the reason you have not been getting better is because we have been treating an infection that does not exist”.

We then went back to the potential transplant. At which point I understood that this lung specialist has probably worked with other patients on my chemotherapy, who probably faced my situation. He explained that if I was on a 1st tier drug we would have more options but I am on a 2nd tier and that does not leave many choices.

I took a 1st tier chemotherapy, Gleevec, for years. It kept me in remission for 6-1/2 years. In 2014 my case of Chronic Myelogenous Leukemia mutated and I became resistant to Gleevec. I was transitioned to a 2nd tier chemotherapy, Sprycel, in January 2015.

He explained that there is no way to predict which patients will have lung complications with Sprycel and that it can happen at any time; that it happens immediately for some people, it can happen 1 or 2 years after starting the drug for others.

I was half-way present and I had tears in my eyes but I formed cohesive sentences. I am really proud of myself for the way I gathered my thoughts despite the fact that I was hurting so badly. With a quivering lip, I told him the name of the Bone Marrow Transplant Oncologist who worked with me last year. This Pulmonologist has an excellent working relationship with that doctor. I told him that my sister is a 5/6 match which is considered a “Perfect Match” and he lit up with excitement for me.

I know that he was not truly as happy as he portrayed, because in an ideal world a bone marrow transplant would not be part of our discussion. In an ideal world, I would be successful and accomplished, medical bills would not have robbed me of everything I ever worked for, I would have children. In an ideal  world, I would not be sick and I would not know this doctor.

When he left the room, I tried to talk with my father but we were empty and raw and sad.

From my position on the exam table, I looked out the window. It was one of the coldest days we have had this January. I stared at the leafless, lifeless branches on the trees and thought about how I feel like those brittle, lifeless branches. I felt grey.

Last Wednesday my husband and I spent a long night in the ER. My chemo can cause Pulmonary Embolisms in addition to Pleural Effusions and Pneumonia.The doctors spent the night ruling out reasons to explain why my chest pressure and difficulty breathing had switched to chest pain. In the end, we learned that the pain is because my muscles are so sore from all the congestion and coughing I have done since November.

Monday morning I had my bronchoscopy. It was scary; the Pulmonolgist was wonderful. She too has the gift of compassion. They took 11 biopsies from my lungs.

We will get the results next Tuesday the 26th. This week, I have also been getting results from various tests my Oncologist did. I don’t understand some of the results.

Have you ever had pneumonia? Have you ever had bronchitis or even a bad cold? It is a miserable feeling. I have had it for such a long time that I don’t remember the feeling of breathing easily.

I am tired, my family is tired. We are ready for Tuesday’s appointment because we will learn what is happening and then we will learn what our next step is.

Right now, I am savoring each moment that feels good.


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

my pumpkin latte

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

cherry pie based on grazed and enthused bars

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 ❤


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


Awesome Podcast on Autoimmune Disease(s) Reversed by Diet & Lifestyle

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Yoga with my niece a few days ago

My niece was with us this week. Dang, I love that girl!!

Back when I was diagnosed with Crohn’s Disease in 2001, I lay in a hospital bed for the majority of a summer and early fall. My sweet niece was about 1-1/2 years old and my precious sister and brother-in-law would drive 5 hours every weekend to see me in the hospital.

Talk about love ❤

They would always put a Gerber Daisy on the front of her little stroller and push her through my hospital door first and she would be babbling away “Aunt Jessie” (she is the only person who was allowed to call me that, I prefer Jessica).

I was so horrifically sick. Prior to that slam dunk into the hospital bed, I had been athletic, I had been a runner. I had been a very successful young adult, I was a hard worker,  I was not used to having to stop anything. But Crohn’s Disease, it stopped me (temporarily).

While laying in the hospital, feelings of hopelessness and confusion would wash over me, I fought them, but it was a battle. I was allergic to almost every medication the doctors tried. At one point, I remember being back in the ER, with my GI doctor ordering Stat blood transfusions while I overheard him asking my parents if they were open to sending me out of state to a different IBD clinic because they could not get my case under control.

Then he said the sentence that kind of made me fall in love with him (in a family-love kind of way), he said “I pledge to take care of your daughter, and I will”. I think I threw up on the ER floor after that, quite possibly blood.

I think that the first real “hopeful” moment in regard to what my future might look like came that fall. My parents and I attended a convention in Atlanta led by the Crohn’s & Colitis Foundation. The former Miss America, Mary Ann Mobley was the featured speaker. She had crohn’s disease. As she stood in of us and told her story, I sobbed. I cried a cleansing cry.

For the first time since July 3, 2001 I felt hopeful that my life would continue. This woman was standing up there in front of an auditorium telling her story. She was just adorable and I could relate to everything she was saying in regard to the sheer pain of crohn’s disease. The fact that this gorgeous woman knew what it was like to crawl on the floor, screaming in agony, made me feel less alone.

From that point on, I said that if only someone who had a history of crohn’s, who had put their life back together, had come into my hospital room, maybe it would have helped me through those horrific months. I try so hard to give others hope, at the same time, I know that everyone responds to illness differently.

That being said, right now, I am listening to an ~awesome~ podcast regarding autoimmune disease and role of diet and lifestyle in healing/reversing the disease.

It is really fabulous and I encourage you to share it with anyone who either has an autoimmune disease or with their loved ones.

At the same time, let me qualify my statement with the reality that people will make lifestyle and dietary changes when they are ready. And that is so important to remember. Getting sick with an autoimmune disease is a horrible feeling. All of a sudden, your life flips upside down and you just want to go back to ‘normal’. You are suddenly forced to change so many things. For some people, the thought of changing diet or lifestyle is really the last straw so they might have to come to that decision later (or possibly never). For me, it has worked and I want to share this with you. 

I think that the reason I was so ready to plunge into the diet change is because when I got crohn’s disease at 29, I was in the hospital for the majority of a summer and early fall and had to be fed through a central line IV that was inserted into my heart.

One of my best friends told me about the Specific Carbohydrate Diet (SCD) and she went on to tell me that many people with crohn’s who follow the diet are eventually able to eat and live normal lives again. I wanted to be able to eat again. I also wanted to live a normal life again, so if that meant trying the SCD, I was all about it.

Over the years, I heard about how people with crohn’s disease do well with the Paleo diet and I scoffed at that idea because in my mind, the “Paleo diet” meant bacon slathered on top of more bacon (and I can’t even eat bacon due to migraines). For the life of me, I could not understand why a “healthy diet” would be based on eating only meat.

…clearly I did not look into the diet or I would have understood that it involves a TON of veggies and fruits.

I fell onto the Paleo diet out of absolute desperation.

It happened last January during my leukemia relapse. I had grown resistant to Gleevec. The oncologists started me on the new chemotherapy, Sprycel, which is a fabulous drug. However, side effects can include colitis and intestinal hemorrhaging. For one, the drug is coated in lactose as a protein binder. So my oncologist had me taking it with Lactaid but that was not helping. It was like my case of crohn’s which had been “quiet” for such a long time had come back.

I spent a lot of time going back and forth between my oncologist and my GI doctor. I was not having a real crohn’s flare, but my intestines were being torn apart by the new chemo. It was dangerous, given my history of a profound onset of crohn’s in 2001.

We had to look closely at the bone marrow transplant option because we were not sure if I would be able to continue with the Sprycel.

In addition to being emotionally crushed, I was so sick.

I decided that I would go back on the intro diet of the SCD in an attempt to get the inflammation of my GI tract down. I was looking online for SCD recipes that did not include nuts or dairy and information about the AIP (Autoimmune Protocol of Paleo) kept popping up on my search.

I decided that I would give it a try.

It worked! The inflammation in my GI tract calmed and I was (am) able to take my Sprycel without any problems. I do continue to take a Lactaid pill with it.

But, so much more has come from the AIP.

Seriously. I went on it to be able to take chemo, to get my GI tract back to being OK (because I was doing OK before the chemo change). But I was not this healthy, vibrant or pain-free before going AIP.

Crohn’s disease is a disease of malnourishment. No matter how much I ate, I was always struggling to absorb nutrients, my skin did not glow and my body hurt. It is common with many autoimmune diseases to hurt or ache, to have joint pain.

Most of the “autoimmune symptoms” that I used to have are gone now and I have only been on the diet for 7 months.

I never expected it to make such a big difference in my life. I recommend that anyone with an autoimmune disease give it at least a 1 month trial.

There is an awesome “support group” on Instagram which you can find by using #AIP and I think that is very important because it gives you ideas of how to follow the diet with yummy recipes. It also gives you a huge network of people who don’t see themselves as victims of illness; they see themselves as strong people who go through the same fights that you go through.

It is very healing.

Below you will find a link to the podcast. It is an interview led by Eileen Laird of the Phoenix Helix. She shares her story which is so encouraging, in which she reversed Rheumatoid Arthritis through dietary and lifestyle changes.

During this podcast she interviews 5 people whose dietary and lifestyle changes have healed and mostly revered their autoimmune disease (some take low-dose maintenance medications). Today’s podcast interviews include the following diseases:

*Rheumatoid Arthritis

*Takayasu’s Arteritis

*Multiple Autoimmune Syndrome

*Multiple Sclerosis

*Lupus

Here is the link to the free podcast (click on the little gray box under “Listen to the show”)

http://www.phoenixhelix.com/2014/09/14/my-new-podcast-dedicated-to-autoimmune-healing/

 

 

 


Lean On Me

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Starting Daily Walks with Our Pup March 23, 2015

The summer before my senior year of high school I went to The (former) Soviet Union.

I was a Student Ambassador and traveled with a delegation of ~30 other high school students.  It was a brilliant summer. I was 17 years old.

We traveled to 5 Republics: Leningrad (St. Petersburg), Sochi, Minsk, Kiev, Kharkov, Moscow. Our trip took place in July 1989; 4 months later, The Berlin Wall came down, and the official collapse of the Soviet Union followed in 1991.

We were young enough that our emotions and experiences did not interfere with our openness to meeting new people. The purpose of the trip was for delegations of youth from our country to meet with groups from their republics with the goal of better understanding one another even though our lives were very different. The program was established by President Eisenhower in 1956. We learned so much about them, about us, about overall humanity.

As an adult looking back, I have such an appreciation for the leaders of our trip. They did a fantastic job of keeping a group of teenagers cohesive through a myriad of events that were intense and provoked deep thought and emotion.

One thing they did from the beginning was to unify us with a group song: Lean On Me.

That month, whenever we had scheduled meetings, unexpected meetings, serious or silly moments we would end our discussions with a group hug and sing Lean On Me. We used to talk about the meaning of the lyrics to that song. We talked about how important it is to be there for one another because sometimes life is too hard for one person to do alone.

I hit that place last week. I hit it hard and even though the diagnosis was pneumonia and not gratefully not  pulmonary embolism, my spirit was crushed in the ER.

It is not easy to discuss serious illness(es), treatment options, possible death. It is not easy to go through painful illnesses and hospitalizations.

I have been doing this since 2001 and can usually dig deep and keep going.

However, after 4 months of isolation and illness at home, discussions of bone marrow transplant, horrific bone pain, and difficulty with new chemotherapy, last week’s ER trip followed by the news that my immune system has been wiped out was just too much for me.

God saw me crumble last week. And even more precious, He held me close to Him while I broke. I did not even have to ask, He let me lean on Him while He pulled together a series of pep talks and emails for me that stem from relationships that started decades ago between people I have never met.

One thing that has been consistent over the past 14 years and the battle for my health: He always comes through for me in magnificent ways.

 I fully understand that there are a gazillion things happening right now that are much worse than my personal little crisis but He has never dropped me. He has been with me through the hills and valleys of the past 14 years and not once has He left me hurting without sending some really phenomenal rescues.

Right now, I cannot be around other people because my immune system is suppressed, but God made a way for community to rescue me when I was drowning without breaking my doctor’s isolation orders.

 Over the weekend, I had email exchanges with other people who have walked such similar paths that I have been walking the past 14 years. Those people helped me to feel much less alone.

I also received phone calls from 2 people who have survived stem cell/bone marrow transplants. They were both honest with me about the brutality of the procedure but they also gave me inspiration and words that I can hold onto right now. One of them helped me understand that this is the time that I must get my support system into place. They both understand how it feels to be isolated due to suppressed immunity so they were able to appreciate where I am right now.

The woman who called offered great insight into why this has been especially tough on my emotions: in addition to leukemia and chemo and talks about bone marrow transplants, my husband and I moved here last April and bought our house in November, then I got sick…

…even though I have lived in parts of this large city off and on throughout my life, we had just moved back and I had not had the chance to get a well established routine and pattern with friends in place before the leukemia came back.

She encouraged me to start finding as much of a routine and community as I possibly can right now.

For the past 6 weeks, I have been sitting on our front porch for ~15-30 minutes every afternoon, taking in the healing sunlight. I told her that I would add walking our dog 3 doors down and back.

She was great, she did not let me get away with just telling her, she said she wanted me to text her the picture afterward.

She gave me a call to action and it worked. Our dog and I made it 7 houses down and back. It felt good to move, my heart rate was definitely up. Trying to take a selfie with our dog was like a second cardio workout.

Her challenge did so many things for me: got me moving, took my mind off of being sick, gave me a sense of accomplishment, gave me this ridiculous photo (see above).

I have some friends from different stages in my life who have been in contact with me over the weekend and we are planning forward for reunions.

I also got 3 care baskets from a women’s Bible Study in our neighborhood. Last fall, I attended the study for a short period but then got sick and have not been since November. However, these women have continued to pray for me. They put a lot of thought into the care baskets they made for me because I cannot eat very much right now due to chemo side effects. The baskets are filled with non-food gifts and even a hand-crocheted blanket.

care baskets

And my heart is better.

Even though I have not been able to get out and find community, God created it and literally brought it to me. He gave me people to lean on when I could no longer keep going.