Change in Perspective

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Chris and Jessica March 2017

“Always remember your Focus determines your Reality” – George Lucas

The past 16 years have taught me how powerful our thoughts are in the healing journey.

This is not to minimize Crohn’s disease, leukemia or immunodeficiency because they are very real conditions that require real medical attention. But I have learned, first hand, how much influence our thoughts have over our health.

These days I am focusing on what my immune system is capable of and how strong I can get instead of thinking about deficiency.

Staying in the moment, visualizing health and speaking peaceful words of wholeness over my body have become healing tools I use regularly.

And while I know how to do these things, while I know they work and they help me stay well, I fail to do them consistently.

This life stuff is hard. You know it is too. It can be incredibly messy and burdensome in ways we did not imagine possible. And whatever burden you bear, it can sneak up and get the best of you no matter how strong your faith or mental fortitude.

March was one of those months for me. I caught an infection and while it was certainly not the sickest I have ever been, I felt like giving up.

Since I am allergic to the traditional medical treatment for immunodeficiency, my choice to prevent infection is to rely on lifestyle and a nutrient dense diet. When I got sick in March all I could see was a concrete gray wall in front of me with no path forward. I was grief-stricken, depressed and felt hopeless.

Gratefully my oncologist and one of the Physician’s Assistants from my Primary Care Doctor’s office recognized that I was at the giving up stage. They worked with me to develop some new strategies to try to boost my immune system which are outside of the box of traditional medicine.

They started me on Bovine Colostrum which is rich in immunoglobulins. Immunoglobulins are the part of my immune system that are deficient from years of chemotherapy. I am allergic to the medical supplement for immunoglobulin deficiency which is derived from plasma. However, I tolerate the Bovine Colostrum without any difficulties. I have been taking it for a month and my body is so much stronger.

Over the past month, I have been able to go out and socialize more than I have in the past 2-1/2 years. And it has been so much fun! The Hubs and I are enjoying things we used to take for granted like easy days at restaurants, live music and even drinks at sidewalk cafes without serious concern.

Last March I allowed fear to trump hope. One of the most harmful things fear does is that it skews our perspective.

Ironically, once I regained my sense of hope a picture from a year ago popped up in my Facebook memories. My father had taken the photo of us celebrating my 44th birthday. It was a hard and sad birthday because I had just come through the allergic reaction to the IVIG treatment.

When I saw the picture from a year ago and compared it to this year’s birthday picture I was reminded of the power fear has to skew reality. There is no denying that I am significantly better this year than a year ago.

As I often say, healing happens in baby steps and it can feel like we are not moving forward but we are.

Birthday March 2016

March 2016 (I was still very sick)

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March 2017 (dealing with immunodeficiency but A Zillion times better than a year ago)

 

 

 

 

 

 


A Hard Day: Life with Immunodeficiency

Jessica

Jessica — jgb

I wrote this on March 9, 2017. I chose not to post it because I worried that some people would judge me as wallowing in self-pity. Today I read it and see how far I have come. For you to understand the value of recent lessons learned, it is important that I share this post from March 9th.

When I started my blog back in 2014, I titled it with intention. Chronic migraines were controlling my life. I decided to start this blog with the goal of focusing on my “Feel Good Days” in attempt to feel some control over chronic migraines.

Fast forward a leukemia relapse, remission, numerous infections and a diagnosis of immunodeficiency. Almost 3 years have passed since I started this blog.

Today, I sit in a puddle of tears because I recently pushed past the small reserve of immunity I have and am quite sick. Sick is never fun. I feel miserable; don’t you hate that flu-like feeling too?.

I am immunodeficient from chemotherapy I take for leukemia. If you Google “What is Immunodeficiency” you will read

Immunodeficiency (or immune deficiency) is a state in which the immune system’s ability to fight infectious disease and cancer is compromised or entirely absent”

Unfortunately I am severely allergic to the IGG supplements that most  patients with immunodeficiency or even immonosuppression take.

The type of leukemia I got requires daily chemo for the rest of my life. And trust me I am GRATEFUL for the chemo because I do want to live and when I had the active leukemia that was just horrific.

So, my options for staying healthy are to stay away from crowds, use excellent hygiene, avoid sick people, eat a nutrient-dense diet and take safe antivirals (like elderberry) that won’t interfere with my chemo.

I do those things religiously.

This is the thing: I love people. I am a person who gets my energy from being around people so these past 2-1/2 years of learning to live a much more isolated life have been horribly sad. I feel like I have done well. I created an online community through Instagram. And now that I am healthier I do as much as I can to get out and be active, be with small groups. 

Everyone has hard days. Mine typically involve fevers, body aches flu-like feelings and questions about the possibility of pneumonia and ER trips.

Days like this, the hard days, I feel so darn alone. I feel hopeless. I even wonder why my life has been spared because my mind will go to that farthest place of “how can I live so lonely for so long?”

But I forget:

1.God does miracles: the very fact that I am alive and doing as well as I am is miraculous

2. Medical advancements are always being made and something may come out tomorrow to help my immune system. 

I must do what helps me. Practice Gratitude:

  1. God gives me shelter. I have a home and warm clothes, warm blankets to help me with the fevers.
  2. God gives me the ability to work from home with as both a telepractice speech therapist and a Beautycounter consultant. Through those jobs I can bring income into our home. I can no longer do what I used to be able to do.
  3. It is a sunny day so while I work today I can sit with layers of warm clothes, a mug of anti-viral turmeric bulletproof coffee and glance out the window to see a sunny day
  4. I DO bounce back faster now than I used to; that is a fact.

I will be better soon.


Autoimmune Awareness Month 2017

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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.

Troubled Water

 

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Troubled Water — Jessica Ginn Boehm

I am a girl who feels all the feels.

Friends and former colleagues you know that about me. If you had dated me you would know it, if you and I are friends through the blogging community you know my passion for all the things. If you parent me, sister me, if you are my family you know that I feel deeply. And God Bless The Hubs because he certainly knows that I love deeply and that when my heart breaks, my world stops.

The past 2 weeks Facebook has been a jagged pill to swallow as have I scrolled past political arguments. I have read mean comments exchanged between friends –> people I love and admire. Though I am trying hard to stay out of the political fray, I have occasionally thrown my like or dislike toward a post and I am aware that my actions have ramifications. At least one person will see my opinion and they will feel either justified or angered by my opinion.

These recent weeks have cut me to the core and I know that I am not alone in the hurt. 

Since January 20th, I have watched the majority of my newsfeed try hard to make sense of changes that, no matter how you see them, are highly charged with emotion. 

We are not going to come to the same conclusion. That does not make us wrong or right, good or bad.

Over the past months I have found myself wondering if I am a Christian because of different political arguments. I have literally cried about that. More than once. All because of things I have seen on Facebook that have suggested that I am not a Christian. Even though I am a Christian.

I am sharing that with you because I have also watched some of you question one another’s Christianity on Facebook because of responses to articles or political views.

Jesus is so much bigger than politics.

Sadly echo-chambers on social media have created environments for us to see people who think differently than we do as the “bad guy” and that is just not true. The truth is that we really do have more in common with our neighbors than social media leads us to believe.

Ironically, I am finding that the very thing that taught me to unplug, to respond versus react, are the lessons I have learned from managing Crohn’s disease.

When I was 29, I spent the summer and fall of 2001 in the hospital in horrific pain. I was fed through my heart and diagnosed with a profound onset of Crohn’s disease. Overnight I was forced to give up a very happy successful life for one that was marred by confusion, loneliness and excruciating pain.

I spent the week of 9/11 hooked up to an  IV on a wall in an Atlanta hospital and wondered how I would make it out should our hospital be hit by a plane because our city was a target. Everything was upside down.

My doctors and nurses told me that in order to get better I had to learn to not stress.

Learning how to not stress when life did not make sense seemed impossible. But I desperately wanted to be able to eat again, I wanted to get out of the hospital. So I finally picked up “fluffy books”, books that made me laugh. I watched movies that forced me to laugh. I forced myself to laugh when all the things around me suggested I crumble to fear.

Looking back, I taught myself to unplug long before the word “unplug” had anything to do with self care. 

This is undoubtedly an important time in history. However fighting on Facebook is not necessarily leading to productive conversations. Yes there have been a few that I have seen but for the most part the social platform is not set up for sharing deeper political thoughts.

Last fall I felt overwhelmed by the political fights on Facebook and I took time off. That time off was so helpful and calming to me. I was able to find my center again. During my Facebook hiatus, I decided what the different social media platforms mean to me.

For me, Facebook is a way to keep up with friends, store pictures and memories. It is also a a way to be involved with some private groups who are a very positive influences on me.

When I look at politics (and I do) I look other places than Facebook. I don’t mix my friendships and politics.

I use Instagram for pictures and community. I use my personal Instagram for pics an keeping up with friends and I use The Feel Good Days to keep up with my wellness and lifestyle community.

I use Pinterest for recipes.

I hope that my post does not come off egocentric because that is not how I intend it.

As I said at the beginning, I am a girl who feels all the feelings and I just don’t quite know what to do with the heartbreak of the past 2 weeks.

If my post means anything to you, I encourage you to Respond not React. There is a difference. Pause, think about that.

What do the different social platforms mean to you? How do you want to use them?

Earlier this week, when my heart cracked wide open in sadness and I posted a song by Simon and Garfunkel on my Facebook page for several reasons:

  1. This album takes me back to my senior year of high school when I was a Student Ambassador with the U.S. Government to the (then) Soviet Union. We held important meetings in 5 Soviet Republics with the goal of finding common ground and establishing peace. That was in 1989, the year before the Soviet Union fell. Throughout that trip we listened to Simon and Garfunkel on cassette tapes, the music was “retro”, we were young. It all felt good.
  2. The lyrics to this song are very appropriate for this time period.
  3. I have a secret (not so secret) crush on Art Garfunkel – that slight smile –> wait for it  😉 

 

 

 

 

 

 


I Am Courageous

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Bulletproof Turmeric Latte — JGB

 

You know that feeling when you are clicking along just fine and someone or something pulls the rug out from under your feet? It is a horrible feeling.

That happened to me at 11:00 this morning and it took all day for me to pick my heart back up off the floor and press forward.

Last week my oncologist checked my immune system. The day I saw her my husband drove me to the appointment because I was curled up in a ball very sick with a stomach virus.

When we entered the patient lobby, I put a mask on so I would not expose the other patients to whatever I had. While waiting to see the doctor I nestled against the Hubs and quietly moaned because that stomach bug was too miserable to be completely silent. Tears pooled in my eyes while I tried so hard to think about anything besides how I felt. Other women who had been sick from chemotherapy brought tissues to me. Assuming I was nauseated from chemo, they tried to comfort me with words of “I have been there sweetie, it gets better”. I so appreciated their kindness, I did. But part of me felt more lonely, more isolated by the fact that I knew I was sick because of immunosuppression from daily chemo that I will probably take the rest of my life.

Since my diagnosis in 2007, I have learned so many things about cancer. A couple of those lessons:

  1. Patients are very kind to one another –> we are all stuck in this together, we hate it and there is a lot of compassion for each other. That incredibly nice and refreshing glimpse at humanity is found in this community.
  2.  Different cancers have different types of treatments. Some people go trough harsh  treatment and they are cured. Other people (people like me) have less harsh treatment but we have to stay on chemo forever and we live in a state of immunosuppression from ongoing chemotherapy.

Last week my oncologist ran a panel to test see how low my immune system is. We already knew it was suppressed because a year ago right now I was severely sick with a drug resistant respiratory infection.

Last March she tried to boost my immune system with an IVIG treatment which is the gold standard treatment for immunosuppression. It usually works wonders for people and lets them live normal lives. Unfortunately I had the rare but very serious serum sickness with chemical meningitis responseAt that point my oncologist told me that IVIG is not an option for me. I cannot take IGG supplements by mouth either. I am too allergic, it is too risky.

So today at 11:00 I opened an email and saw my labs. I saw that my IgG levels are dramatically lower than they were the last time they were drawn.

My levels Are. So. Far. Below. Normal.

I cried. I reacted strongly out of fear. My to-do list dropped and absolutely nothing got done.

I sat in a puddle of tears and allowed my mind go to that worst place. I sent a flurry of texts to my sister, my parents, my husband seeking comfort.

Some of you will read this and criticize me for reacting in fear. I agree, I should have responded better. However, I am a person with all the feelings and at times I break.

While I was waiting for my oncologist to return my call, I made a cup of Bulletproof Turmeric Latte (because I incorporate antiviral turmeric into almost everything these days).

I sat down on our couch and looked out the window. My husband pulled into our driveway and I exhaled. I thought about how grateful I am for this man who has become my rock. God put such a strong man by my side. The Hubs is always steady, even when waves come crashing down in my healing journey.

A nurse from my oncologist’s office called. She was surprised that I had already seen my lab numbers. She argued that was not possible for me to have seen my numbers. I told her they came in an email on my patient portal. She continued to try and argue about the fact that I should not have seen them yet and I told her that none of that mattered, I just wanted some guidance because I felt scared.

I asked if my immune system is going to continue to fall and she said that they don’t think that it will. She said that the numbers today are similar to my numbers a year ago. She said that they they believe this is my new normal.

She told me that I have a condition called Immunodeficiency and I am going to have to learn to live with it.

She went on to explain that “everyone has something: some people have diabetes, some have”…I don’t remember the other examples she listed…

In honesty, I wondered if she had looked at my medical chart because I personally have learned to live with a lot.

The conversation left me feeling like I needed to speak up for myself and my life experience.

As tears streamed down my cheeks, I interrupted her. My voice cracked with heartbreak when I said “I have become quite courageous in my 45 years”.

I asked her what we need to look for, how do I know if my immune system drops further. She gave me guidelines.

So this is where I must practice what I preach. I must walk by faith, dream big, believe for healing. I must look beyond the numbers.

Last year my oncologist told me that most of her other patients who have the same immune count I have are on at least 1 antibiotic per month. I have not had to take any antibiotics since the infection ended last January (a year ago).

She also told me that summer would be my easiest season and fall would be my hardest season. While I did catch viruses this past fall none of them knocked me down severely.

This past fall I started socializing again. I was cautious and picked small groups and I moved forward. We found that for the first time in years my body is strong enough to get over viruses. I am able to use antiviral, nutrient dense foods and juices to nip colds and bugs in the early stage.  In fact, I am healthier than I have been in years. 

So as scary as those numbers are I must look beyond the numbers and walk by faith, speak life, eat nutrient dense foods, drink antiviral juices and focus on health. 

I am well and I am good. Today’s’ news scared me and set me back for a little while. But it was only numbers. Nothing changed.

I am still healthy. I am moving forward. 

 


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!


Mourning Has Broken

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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

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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.