Gluten, Gluten Effing Everywhere

Gluten, Gluten Effing Everywhere

fooducateThis Vlog talks about the frustration I had this morning when I came across the knowledge that the cottage cheese I eat every day actually had gluten in it, too.

https://www.facebook.com/A-Token-Life-303943289954801/

In this Vlog I once again mention Fooducate.

 

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F**K SURRENDER: Dysautonomia and MCAD

My life for many years has been about surrender. Today I am saying: FUCK SURRENDER.

One out of every six people who read this could be suffering right now from Mast Cell Activation Syndrome or Mast Cell Activation Disorder. I think I am one of those people. I am starting on my quest today to prove it.

For those who haven’t known me for years, let me explain.

When I first wrote my first book, I signed with Llewellyn Press and then promptly took suddenly and lifealteringly  ill. Even though before that my life had been marked by seriously strange and rare occasions of horrible illness. It was nothing to the horrible downturn my health took after signing. I lost my contract and all the pre-book momentum I had worked to gain. I withdrew from the scene related to the book to like my wounds and learn how to deal.

I had a litany of strange and weird illness strike me down with even stranger presentations before that notable downturn. All these times of weird eventually cleared up and I was left with, “Wow that was medically strange.” Not an explanation, mind you, just “weird.”

Nearly everyone who reads this blog knows that this eventually has lead me to a diagnosis of familial or congenital neurocardiogenic syncope, an extremely rare and verifiable disease. One I had verified at Vanderbilt University. What most do not know is that this disorder, genetic condition DOES NOT really explain all the other weird symptoms and tribulations my body puts me through on a daily basis.

Enter Dysautonomia.

Dysautonomia is an umbrella term used to describe disorders of the autonomic nervous system (ANS)  (Freeman, Goldstein, and Thompson 2015). I liked this term because I felt it better described what I was experience: a whole bodily system failure. For many years I have religiously followed Dysautonomia International, an organization for connection with others who suffer, research, and dissemination of information.

Recently this lead me to purchase the book The Dysautonomia Project: Understanding Autonomic Nervous System Disorders for Physicians and Patients. Also those who follow know that about six weeks ago, anomalies in my son, Tree Bear’s test results have me worried that he is similarly afflicted. I received my copy this week and read it in one sitting.

What gave me pause was the chapter called The Triple Threat: POTS, MCAD, and Connective Tissue Disorders in the Dysautonomias, by Lisa Klimas, MS (Freeman, Goldstein, and Thompson 2015; page 131) and another chapter called Mast Cell Activation Syndrome, by Lawrence B. Afrin, M.D. (Freeman, Goldstein, and Thompson 2015; page 135. I read these chapters with a sort of out of body understanding noting how many of the symptom boxes for MACS I could personally tick off.

As is my way, I sat on that. Yesterday, I ended up at a quiet dinner with my husband and was telling him about these chapters, upset I couldn’t remember the acronym. With a little help from Google, I found it and started using Wikipedia to tell him about the disorder. He was, like I, cautiously optimistic about how many of the symptom boxes I check off. I went home and re-read those chapters and noticed that Afrin had a book out called Never Bet Against Occam. The book was expensive and I downloaded it anyway. After about two hours, I was completely freaking out. This book could accurate describe and explain every single “weird” medical thing I had ever experienced.

As I read I learned that Afrin and others had successfully diagnosed these people with an actual disorder AND TREATED THEM WITH GREAT SUCCESS.

and treated them….

with great success……

I started reading out loud some of the excerpts from the book. My husband at one point said, “You made that up. The book doesn’t say that.” I turned the Kindle around and pointed. He sat there mirroring my absolutely stunned expression. My husband asked, “Did he [Afrin] interview you?”

I started to cry.

This morning, after some research, I made an appointment with a recommended doctor in Atlanta. I have an appointment with my dermatologist for the lesion on my leg and I know what test and biopsy I want them to do in preparation for the evaluation with the new doctor next week.

Those who suffer with chronic weird diagnosis suffer with a constant battle between the idea that you are making stuff up and knowing in your soul something is really wrong with you. The thought that there is treatment that might alievate this fatigue I battle daily is…. undiscribable.

My husband worries I will get my hopes up again with no resolution.

I am worried that I am going to suffer the rest of my life trying to fulfill all the god and goddess have called me to do with a broken body.

Even if it isn’t MCAD or MCAS; it gives me hope that not all the answers about the bodies problems have been revealed yet and I am not crazy.   My body may be broken and my mind is just fine.

Devastating News & Lessons Learned

The past few weeks have been difficult for my family. My boy, who has been known in all my writings as Tree Bear, got some disturbing test results back from a routine doctor’s visit.

With my history in Dysautonomia, I was concerned given some of the results. He has been battling a Vitamin D deficiency and clinical fatigue which we have been treating as a case of depression.  As he looks to transition into a new college program later this month, I decided to request a test on other vitamin levels (B12/Iron) and have his primary care physician test his inflammation levels.

Several weeks ago those levels came back abnormally high without any known reason.

Additionally, I noticed Tree Bear’s acne was becoming unusually pusie with discolored pus (browns and greens) on his back. Concerned, I took him to the dermatologist who advised he had a bacterial skin infection and diagnosed a common antibiotic.

The next week, Tree Bear started having heart burn and digestive distress, including throwing up. I took him to his primary care physician. Concern over the physical exam leads them to perform an ultrasound where Tree Bear is diagnosed with splenomegaly.

By this time, between the vitamin deficiencies, the abnormal inflammation levels and the splenomegaly, I am concerned that he is showing all the signs  and symptoms of someone suffering from dysautonomia. The genetic disorder that has devastated my physical health for so many years. I research providers at Dysautonomia International and see that one doctor is located at the Sibley Heart Center part of the Children’s Healthcare of Atlanta network and Emory University.

We get Tree Bear scheduled for evaluation for dysautonomia. At the appointment at Sibley Heart Center, an rhythmic anomaly is noted during the EKG and coupled with the vitamin deficients, splenomegaly, and inflammation levels, Tree Bear is given a “more than likely than not” diagnosis of dysautonomia. A diagnosis that Tree Bear is still fighting accepting. For him, dysautonomia is a medical boogieman who took his mother’s vitality and health from her right before his eyes. Convincing him that a healthy lifestyle and treatment early in his life would help him live a very different life than my own, is an uphill battle.

mom-and-baby-hands-400x400And all of this does nothing to address what dysautonomia experts call “secondary issues” a diagnosis of dysautonomia indicates. If you have diabetes and then develop kidney disease, kidney disease is a secondary health problem caused by the diabetes. In dysautonomia, the secondary issues often are where the primary symptoms spring from. For Tree Bear, the splenomegaly, inflammation levels and vitamin deficiencies all are rooted in the genetic disorder of dysautonomia, and are considered a secondary issue that requires medical attention. Often fatigue in dysautonomia is actually a manifestation of secondary issues like vitamin deficiencies, secondary infections and viral infections someone is more susceptible to because of dysautonomia.

In order to get real serious about Tree Bear’s treatment, I immediately switched him to work with Heather at Gwinnett Center Medical Associates. Heather is a great provider who has, from the get go accepted that I was that “weird” patient who has really educated herself. She acts as my personal Coordinating Care Physician. This means, she automatically gets all test results from all specialists and I have easy and great access with her nurse, Shari, to see that any tests done by Heather get sent to the appropriate specialist.

Heather saw Tree Bear and we immediately tested for mono or Epstein Bar, did an IG panel, and retested his vitamin D levels. I knew from my history, that low IgA levels are often an indicator of dysautonomia.

Today those results came back, Tree Bears’s IG levels are clinically low, his vitamin D levels are barely passible, and the Epstein Bar test clearly showed a previous infection with some viral load.

Tree Bear is schedule with a new immunologist and I spent most of this morning, going over his results, setting up online access to his different doctors, and bringing his biological father up to speed. Then I broke the news to Tree Bear myself and discussed what I know will be done Thursday.

That’s The Situation AND…

When I talk about the clinical stuff, that is all it is, clinical stuff.  It is me sticking to as close to medical, testable theories as possible. And I am a mother. Tree Bear’s mother. For the past two years I have been treating Tree Bear like he was a teenager who was depressed, angry and lazy, like many teenage boys can be.

I am a bit upset with myself that I ignored the symptoms for sometime.

On the other side, I am so grateful for the personal attention I have paid to my own condition and test results. I am glad that I had partnered with Heather and knew if I took my most precious boy to her, she would listen and help me figure out what to do and where to go. It feels like dumb luck that I knew to ask for the inflammation panel, the IG panel, and check the vitamin levels. It wasn’t. It is the hard experience of my own battle against dysautonomia. It was the complete understanding that this is a genetic disorder that Tree Bear would be highly susceptible to because of his genetic link to me. Tree Bear will never again be told he is being lazy because he is fatigued. He will never suffer through a diagnosis of hysteria.

Tree Bear is learning directly from me how to interface with doctors and I am giving him lots of room and education to make his own decisions. Tree Bear has asked for the table tilt test to be done to confirm the diagnosis and I will encourage him to go to Vanderbilt University for further diagnosis and workups.

There is much that I can be grateful for in all of this.

Lessons Learned

I have learned a few things about dealing with doctors over the years as I battle dysautonomia. This chapter in my journey has taught me a few things about dealing with a chronic disorder and children.

  1. Doctors don’t always know. When I asked for the inflammation panel, Tree Bear was very resistant and his primary care physician even more so. Even I felt I might have been being a bit over protective. I KNEW that high levels of inflammation could indicate dysautonomia, just as I knew that IG levels are important part of dealing with dysautonomia. Too often, mothers who KNOW things let doctors and children talk them out of that knowledge. If the test you request are negative, great! Doing the tests when there is sufficient reason is never a bad thing. More information in chronic illness is always best.
  2. Tree Bear has to be part of the solution. I have to find ways to get him on board with this diagnosis if he is to stand a chance of a healthy life his entire life. Children of any age deserves to be educated about their condition. I have order the Dysautonomia Project book to give to Tree Bear to educate himself. He has to buy into this diagnosis and this means talking to Dr. Hebson into allowing  Tree Bear to have the table tilt test.
  3. Chronic Illness needs all parenting partners on the same page. I spent time this morning talking to Tree Bear’s biological father. To say that we don’t get along is a bit of an understatement. However, Tree Bear needs his father’s support and encouragement to eat healthy, drink water, exercise. Further as Tree Bear’s father, he has the right to know and have access to all the information. After explaining everything to Tree Bear’s father, I sent him all the access information for the various portals so he could look for himself. How I get along with Tree Bear’s dad has no place in a discussion about Tree Bear’s condition. Keep it clinical and on point – just discuss the illness and treatment options. I also sent links to Tree Bear’s dad to get educated about dysautonomia. My hope in all this? Maybe he will see something that I miss or will find some suggested test or treatment that I haven’t run across yet. Fresh eyes and perspective can be very valuable when dealing with chronic illness.
  4. Working against chronic illness, requires a chronic commitment to persistence and perseverance. At least once a week, I spend an entire day thinking about my condition and current treatment plan and now Tree Bear’s condition and current treatment plan. I think about what I can do to improve my health and what other tests or options for treatment I might have not taken advantage of yet that I could. The reason disability exists is to give those who are disabled the time they need manage their chronic or permanent illness or injury. Make sure that you take full advantage of that.

Author’s Note: Tree Bear is 18 now and as a mom I still see him as that 10.5 lb, 27 inch baby I gave birth to 18 years ago.