Simply The Best Salmon Marinade

Salmon

Simply The Best Salmon Marinade – jgb

Earlier this month I made a promise on my Instagram feed that this recipe would be on the blog by midnight September 30th.

Time check as I write this: September 30th 6:40 PM. I may procrastinate but I keep my word  😉

While grilled salmon is not particularly a fall food this is a marinade we use weekly.

Now that we have discovered the individually wrapped, frozen Atlantic Sockeye Salmon Fillets at Costco this has become a super simple weekly meal and it is always delicious.

My marinade is soy-free & gluten free. I use grass-fed butter and recommend ghee if you cannot tolerate butter.

Ingredients

1-1/2 lb Salmon

1/2 Cup diced shallots (migraine friendly onion)

3-4 Garlic Cloves diced

2 Tbsp Grass-fed Butter

2 Tbsp EVOO

1/3 Cup Maple Syrup 

1 teaspoon fine grain Himalayan Pink Salt

1 Fresh Lemon

Fresh Parsley

Directions

  • Melt Butter in a medium sized bowl then let it cool slightly
  • Dice shallots and garlic
  • Mix: Melted Butter, Diced Shallots, Diced Garlic, EVOO, Maple Syrup, Himalayan Pink Salt in bowl
  • Place Salmon Fillets in a bag or container for marinating
  • Pour liquid marinade over salmon
  • Marinade for at least 30-60 minutes in the refrigetor

Preheat gas grill then lower to medium heat.

Place salmon skin side down on grill grates. Pour remaining marinade over salmon fillets.  Grill salmon for ~ 15-20 minutes undisturbed with until it flakes easily.

Garnish with Fresh Parsley

Serve with fresh lemon juice

Enjoy ❤

 


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

Cover Pic

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

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

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

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

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

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

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

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

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

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

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

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


Pain Relieved

Cascade

photo purchase from istock in 2005

I was looking through old photos, trying to find an image to match the way I feel now that I am virtually pain free compared to how I have been the past several months. This picture I purchased from istock photo for an old blog stood out to me.  Unfortunately I do not have the photographer’s name.

Pain Relieved

I cannot begin to recall the amount of times I laid in bed this past summer shivering with pain and a low grade fever begging God for relief. In moments of sheer honesty I told Him that I could not live in this much pain with no answers for the rest of my life.

Each day I got up and tried to breathe the best I could, my ribs, spine and neck all so inflamed and rigid with pain of unknown etiology.

I took narcotic pain medication and nausea medication, a steroid taper. I took NSAIDS which I am not supposed to take given my history of Crohn’s as they can cause GI bleeding. I have taken an Epsom salt bath almost every day.

Nothing really helped

5 days ago I started using hemp derived CBD oil, the legal kind. This does not have psychoactive effects. Over the past days, my pain level has steadily decreased. I am off all other pain medications.

My pain level which was originally a 7-9 is down to a 2-3

You know how it is when things are super confusing and we can get overwhelmed and just not do them? It is normal, in fact some companies use this as a strategy to alter our decision making: overwhelm us with confusing information.

CBD oil has been this confusing for me over the past few years. I had heard about it for pain relief and as a way to help with chronic illness. I also heard about cannabis oil. In fact, cannabis oil is legal in my state for 2 of my diagnoses (crohn’s and cancer) but my doctors won’t discuss it as a treatment option for me. These are doctors who have treated me for years; I know they genuinely care about me. There is a bond that forms when you bring a person and their family through gruesome moments and utter distress. These doctors have done that for me. We have quality relationships. I personally think that they are in a difficult position with constraints that are beyond their control about what is ok to discuss with their patients when it comes to CBD and cannabis oil.

Most of my life I have been a rule-follower. I grew up in a very loving home. Part of the way my family and community expressed love was to shelter us while we were young. Looking back, my friends and I had an idyllic youth and drugs were definitely not on my radar.

Even now, at my age of 45, there will always be a part of me that is compliant to way I was raised. So for me to get comfortable talking about CBD and cannabis oil, I had to go against my upbringing. I also had to go against what my doctors are telling me. None of this has been easy. But I desperately want to get better. I want to get off of some of the medications I take.

I decided to research CBD oil and cannabis oil in order to learn about this medical option that is labeled as “wrong” by people are making decisions, but “right” by people who are fighting for their health.

The truth is that I am being given opiates for pain. I am grateful that we have that type of relief for times of horrific pain which I have experienced with crohn’s, leukemia, even migraines.

However, this recent pain and inflammation that is due to Lyme disease or something else…I don’t want to just exist on opiates that alter my mind, put me to sleep and really don’t even take the pain away. I decided to try Hemp CBD Oil, which is legal for anyone, anywhere.

The pain diminished within 24 hours. I was off pain medication in 2 days. As I wrote at the beginning of this post I have gone from a pain level 7-9 to a 2-3. The CBD oil does not make me high, not at all.

My life is totally different today than it was just a week ago all because I found a way to significantly reduce pain and get off narcotics.

I had forgotten how light life feels to not be in horrible pain. I feel like someone gave me a luxurious gift when the truth is, the only thing that happened is that I am out of horrific pain. That is how devastating pain can be, it can make everything weighty and it can crush your ability to put one foot in front of the other.

There are a lot of uses for CBD oil, some include:

  • Neuroprotective (research is being done on the role of CBD oil in alzheimer’s, Multiple Sclerosis, Stroke, Parkinson’s disease)
  • Pain (Multiple Sclerosis, Arthritis, Lyme Disease, Cancer, Crohn’s Disease, Spinal Cord Injuries, Fibromyalgia, Muscle Pain, Chronic Pain….the list is much longer than this)
  • Anti-seizure: this is a possible anti-epileptic option
  • Anti-acne
  • Anti-cancer
  • Anxiety relief, PTSD, Sleep…

For the first 29 years of my life I did not know what it was like to be in excruciating pain. I have always been a compassionate person but I can remember times when I thought people who talked about pain were embellishing it; I just did not understand because I had not lived it.

I think that history will look back on this space in time as cruel, that there is a stigma against something that can help people with chronic illness/pain. If I have been afraid of the stigma that is associated with CBD oil there must be others who are also living in pain, taking addictive opiates, who are afraid to try something different because it has been labeled with a bad stigma.

CBD oil does not work for everyone. And I am not giving medical advice. I am sharing my experience because I believe it matters and it may help some of you who are also living in pain. If you do look into CBD oil, you want to make sure to get a high quality brand. The brand I use is Elixinol.

I use the hemp oil drops. They also provide it in the following forms: CBD capsules, CBD balm, Repira Versital CBD tinctures for vaping, oral applicator pens, hemp oil liposomes. Elixinol offers CBD dog treats which we are going to try for our pup who struggles with anxiety.

Elixinol is non-GMO, vegan, free of harmful ingredients and pesticides.

 


Sick Summer

Jessica August 25 2017

Chillin’ (Literally Freezing) on our Screened Porch: August 25, 2017

“May was the month my healing sparkled” — I wrote that on June 1st.

Soon after I wrote that I went on to collapse, literally.

June felt like a heavy hauler truck running over me repeatedly, crushing my bones, muscles, joints and all the organs in between.

Everything hurt at a level 8/10 on the pain scale. I ran a low grade fever and was barely able to eat except for sips of homemade chicken soup for the majority of 3 weeks. My history of autoimmune disease led me to think that I was experiencing something related to crohn’s. However my body was not acting like I was having a crohn’s flare. Yes my stomach hurt but it was a new and different type of pain.

I assumed that my immune system was flared and over-reacting to something because it was the only thing I could think to make sense of the extraordinary pain I was in. I curled up in my pj’s for most of 2 weeks, I took pain and nausea medicine which really did not do much to decrease the pain. At some point I even went on a steroid taper. I watched brainless TV and tried to decrease all stress in hopes that my immune system would relax.

Later I would learn that it was not an immune flare. Blood work showed that I was actually fighting an infection during that time. However, what infection was I fighting? What is it that has left me so incredibly sick? That is the question of the season.

This summer I have been to the doctor somewhere between 7-10 times. Most of those times my dear parents have driven me because most days I am too sick to drive.

It has been a summer of medical tests, pain, illness and I am still very sick. I had a few weeks in July when I started to feel better and I assumed that everything was going back to normal. I was so happy to get back to normal. Then one day it was like I tripped over a snag in the carpet and landed back on my face only to be run over repeatedly by that same truck that ran over me in June.

For so many reasons we had hoped to have answers by now. I have completely avoided writing because I didn’t think I could write until I had an organized post with a solid answer to give you. Writing is one of the few things that actually does make me feel better. So today I decided to forget about the need for a perfect post. I don’t have the answers.

I can tell you that it is almost 80 degrees in the Atlanta area and I am wrapped up in layers, shivering with chills on our screened porch. Earlier today I was going to ride to the grocery store with my parents. We need food and it would have been an easy trip. I put on a very comfortable outfit and braided my hair, I really thought I could go but instead I collapsed onto the floor in an outrageous amount of pain. I curled up for 10 minutes trying to decide if I could get back up and go because I wanted to go, I needed to go. But I couldn’t. I knew that I could not even get to the door, much the less walk around a store. I texted my parents to let them know.

You would think that this type of pain would send us rushing to the ER but that is what we have been doing all summer. I have had so many medical tests you can’t imagine. Just last Thursday my dad, The Hubs and I spent the day/night at the ER while I got a CT scan, Spinal Tap and copious amounts of blood work drawn. When everything came back normal the doctors were in dismay. They referred me to a new neurologist. I will see her in September.

This summer I have been told that I have numerous things ranging from Meningitis to to SIBO (small intestinal bacterial overgrowth) to Fibromyalgia to Arthritis to Lyme Disease.

One thing we know for sure, thank God the leukemia is in remission. Another thing we know is that my lab tests keep coming back normal. If you look at my blood, there is no reason for me to be so sick.

This is one of the main reasons that Lyme and/or its co-infections is a likely cause of why I am so sick. Lyme Disease is called the great imitator because it imitates other illnesses. It is very typical for Lyme patients to have illness that migrates all over their bodies from week to week with normal lab tests (exactly what is happening to me).

Other reasons that make Lyme a likely culprit: I got sick with flu-like symptoms in June and I had a red rash at the base of my hair line that extended up into my scalp. However, I have learned that the rash is not a necessary qualifier with Lyme.

We live in a heavily wooded area but I have lived in wooded areas during many stages of my life. I used to camp often and I have been bitten by ticks several times since my childhood. There is a chance that I have had undiagnosed Lyme for years. Or this could all be new since this spring. I did find a dead tick in our bed one morning last April and my husband was bit by a tick during one of the weeks in June when I was so terribly sick (the doctor called in a preventative antibiotic for him given what I was going through).

Testing for Lyme Disease and its co-infections is very confusing and challenging. For one thing, the testing is highly unreliable. I am not making this up, in many states the doctors legally have to tell you that the test is unreliable before they administer it. Another reason is that the CDC approved test relies on the body’s immune system to make antibodies to a limited strain sample of bacteria when there are actually hundreds of strains of the bacteria.

In my case, I don’t really make antibodies because of the immunodeficiency. I hardly make enough antibodies to keep me from catching things like the common cold. My immune system simply cannot make enough antibodies to even respond to this test.

Several Lyme Literate Medical Doctors have directed me to a test that looks for the DNA of the Lyme bacteria in my system. This DNA test also looks for 8 co-infections of Lyme. It is possible that a different bacteria in the Lyme/chronic infection family might be making me sick.

I do have good days and I don’t look sick so that further confuses people. Over the next few weeks I will be doing more tests and seeing more specialists. I am exhausted and in a lot of pain. This is hard on us.

I am not asking for your pity. Please do not feel sorry for me. I have a home and a bed and people who love me. I am blessed. I believe that God will bring me through this. I don’t think He brought me this far just to forget about me. But I am very weak and pain is brutal to the soul.

My request is that when you think of me, please pray that the doctors figure out what is wrong with me so that I can get on the proper course of treatment. Please pray that faith and courage would be restored to me. Please pray for my husband; this has been incredibly hard coming on the heels of the leukemia relapse. We are tired and we want normalcy badly.

Thank you ❤


Hello June

Hello June

 

This morning I submitted my final paperwork for the 2016-17 school year. As excited as I am happy to jump into summer with it’s glorious, healing sunshine I would be remiss if I did not reflect on the month of May because it was marked by milestones. If you have followed my story for very long you know that I often say healing happens in baby steps and it can be so slow that it does not even feel like it is happening.

May was the month when my healing sparkled.

Sista's Birthday Party

Sista’s Birthday Party

 

It has taken 16 years for me to get this healthy. I credit God for healing me and I thank Him for surrounding me with a supportive family, friends and online community. I am so grateful for the combination of western medicine, functional medicine and all of the other factors that have gone into rebuilding my health.

 

Beautycounter Summit 2017

 

On May 4th I flew to Dallas, Texas for the Beautycounter Leadership Summit. Over 2,000 women joined together with the mission of getting safer products in the hands of everyone. That trip was phenomenal. I was so happy that I felt like my heart would explode from joy the entire time I was there.

The Hubs and I flew to Colorado for a family event after I got home from Dallas.

 

Chris and Jessica Colorado 2017

 

Once we returned home from Colorado I focused on end of year paperwork, meetings and final sessions with my students. And then, very unexpectedly one of my dear friends passed away. I was grief stricken and I continue to miss her terribly.

May presented me with all the feelings.

For the first half of May I felt more alive than I have felt in years. I also combated quite a bit of anxiety. It took immense courage to press through the fear of traveling with my diagnosis of immunodeficiency. However the reality is that ever since I added the Bovine Colostrum, Shark’s Liver Oil and use of Purell under my nose in April I am not catching viruses or infections as easily as I was in the past. When I did occasionally feel the early stages of a sore throat I took elderberry, vitamin C, green juice and other antivirals that work for me and I stayed well.

If you are living with an illness I hope that you will take inspiration from my journey. I hope that you will not allow fear to determine your path. I have been given terrifying diagnoses and I have lived through lonely, dark, profoundly painful days. But I am better, my life is bright again. It took a long time and it required a complete change in lifestyle and faith that I would thrive again.

Don’t get me wrong, the diagnoses are real and do require medical attention but I encourage you to learn how to drown out the negative voices and listen to the positive words. Understand your diagnoses, address them, and cling to healing words.

 


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

Before MRI

Before an MRI – jgb

 

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

Troubled Water

 

choppy-waters

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

turmeric-latte

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.