Body Betrayed | Body Disabled

Welcome to My Story ~ Updated 10/30/16

My newest posts display their full text. Older posts will only display one paragraph.
To read the rest of an older post, click on "Click here to Read the Rest of this
Post" link at the bottom of the post.

You can email me at

Friday, January 21, 2011

Extended Medical Leave Begins

It has been a while since I blogged, so this will be a long blog. I also plan to do another documentation video today, so check my YouTube Channel.

Medical Leave and the Disability Process

As of January 5, 2011, I began my extended medical leave as Senior Pastor of Ringgold First Baptist Church. My life has significantly changed. My thanks to the church for allowing me this time of healing.

I spent a couple of days preparing all the paperwork for my disability insurance. You can probably tell that I like to document things and events. I got into the habit of doing so while working on my doctorate. So, by the time I completed the paperwork and attachments I had 36 total pages.

Things are now in the disability insurance company's hands and I am waiting to hear from them. I will keep the progress posted on my blog.

What I Am Doing Now

Last week, because of the snow storm and the grand-kids being out of school all week long, I ran "Big K's daycare and dog sitting service." I am glad school is up and running again. The kids were great and gave no problem. Bethany really watched Alyssa and we ate and watched movies.

This week I am at home by myself (except for the dogs). They sleep most of the time--and so do I--so we are a good team. I am really focusing on resting and recovering.

I do stay active to keep my body moving. I can wash and dry towels and load the dishwasher. I don't do windows or much of anything else. I try to work on supper if I have the energy.

Most of the time, I rest. I have not been working on preparing sermons or doing a lot of thinking. I have not even worked on the blog much until today.

Rest and Recovery is Key for Me!

My Current Diagnoses

Significant Generalized Autoimmune Myasthenia Gravis (refractory): The junction between my muscles and nerves are damaged. My muscles do not receive enough signal from the nerves to respond properly resulting in muscle weakness. This condition effects my entire body, but seems to have the greatest effect on my eyes, voice muscles, and breathing muscles. My breathing muscles are currently working at about 40% of normal capacity. I have great difficulty breathing and my heart rate is increased to keep oxygen flowing through my blood. Extreme fatigue is also a constant companion. My MG has not been significantly improved with PLEX, IVIG, Mestinon, or prednisone.

Severe Small Fiber Neuropathy (whole body): My Severe Small Fiber Neuropathy falls better under the diagnosis of Inflammatory Small Fiber Predominat Polyneuropathy (this is the term I should use according to Dr. CL). Small nerve fibers transfer sensations such as hot, cold, pain, and pressure from the skin to the nervous system. I have lost the ability to feel sharp pain and have reduced sensation to hot and cold over my entire body. Small fiber neuropathy also causes me to tingle and feel numb over most of my body. At times, parts of my body feel like they are asleep. I have fallen three times since early December 2010 because I stood up not realizing my legs were really asleep. I also experience burning pain in my hands and feet.

Autonomic Neuropathy: Autonomic nerves control all bodily functions such as your heart, lungs, digestion, kidneys, sweating, blood pressure, etc. I have trouble regulating my body temperature. I basically stopped sweating--except for occasions when caused by medication. My blood pressure is subject to sudden drops when I standup. Lately, I have been dealing with hypertension and now on new medication to help regulate my blood pressure. My heart rate varies from slow to fast without reason. Autonomic neuropathy can be a subset of small fiber neuropathy.

Slight Sensory-Motor Axonal Neuropathy: The Slight Sensory-Motor Axonal Neuropathy (though diagnosed and indicated through EMG/NVC in December 2009) is no longer an issue. Any similar/lingering symptoms are connected with the Inflammatory Small Fiber Predominat Polyneuropathy. From my perspective, the first round of PLEX really made significant improvement in this condition. This is no longer considered a current diagnosis.

Diagnostic Procedures, Tests, and Treatments

Each of these procedures was performed to identify or exclude possible causes of my various symptoms. Diagnosing me involves a lot of exclusions.

Here are the procedures and test I have had over the last two years: Abdominal Ultrasound, Colonoscopy (x2), CT Scan, CT/PET (x2), ECG/EKG (many), Echocardiogram,, EGD, Emergency Room Visits (x3), EMG/NCV (x3), Fine Needle Axillary Lymph Node Biopsy, Glucose Tolerance Testing, MRI, Nuclear Stress Test, Physical Therapy Evaluation (x2), Pulmonary Function Tests (x4), MVV, Cardiopulmonary Exercise Test, Right Axillary Lymph Node Biopsy (three surgically removed), Right and Left Heart Catheterization, Single Fiber EMG, Sleep Apnea Testing, Vocal Cord Endoscopy. And don't forget gallons and gallons of blood work.

I have had the following treatments: Tons of medication, Ten sessions of Plasma Exchange (PLEX), Five days of IVIG.


Thanks again for your prayers and support. Cathy and I really appreciate it. Soli Deo Gloria!

1 comment:

anne.newton5 said...

Thank you for your posts. I am a Christian living in the UK.

I too have Small Fiber Neuropathy which I got from a Brain Virus in 2000.

We don't get any medical help here apart from Pregabalin, just left to get on with it which is very, very hard.

I can't walk far without numbness spreading badly and night times are bad trying to sleep because of the pain.

I was 45 when I developed it and now I am 56, now my tongue is going numb and burning too.

It has been hard on my family.

God bless Anne