The thorn in my side: my medical journey

The content here was actually part of another post I was writing, but I decided to break it into two posts to separate the subjects a bit. This is more of a chronological list of recent events. Look to some of the links to my previous posts for the stories behind these things.

My medical history started back when I was 3 years old and I was diagnosed with Type I Diabetes Mellitius. My family on my father’s side is predisposed to diabetes, and 2 of my 3 siblings have it as well. I had a great mother who taught me much about the disease, but my control was awful. Despite being a “brittle (labile) diabetic“, I enjoyed exceptionally good health for a diabetic compared to my sister and brother. I started on a Diesetronic insulin pump in 1993 to try to control my blood glucose, but even 20 years later, my brittleness is a horror to my endocrinologist, Dr. Mandana Ahmadian.During the summer of 2009, I had unusually excessive thirst, and I started having to urinate excessively. My doctors attributed it to my diabetes, since thirst is a common side effect of high blood sugars. However, my blood sugars had been relatively sane during that time. I did find that drinking Dr. Pepper quenched the thirst, but I still was getting hardly any sleep. Remember this paragraph; it will come into play later.

On November 15, 2009, I went to Evergreen Urgent Care after having severe headaches for almost a week. I was referred to the Evergreen Health ER, where they loaded me up with happy juice, did a CT scan, a spinal tap, and blood work. They diagnosed me with viral meningitis, gave me a bottle of Oxycontin, and sent me home with the information that it would resolve itself “in about 10 days.”

A couple weeks later, I was back at the ER, where we went through the same procedures again. Same diagnosis, same treatment, except they gave me  oxycodone because I had started hearing things that just weren’t there. This was my first experience with the shift in healthcare to convincing people that nothing is wrong with them. For the record, Oxycontin’s generic name is “oxycodone HCL.” One in the same drug (I did not know that at the time). For the record, I began having sleep paralysis (seen in only 6% of the general population – remember this, it will come up again), extremely ugly nightmares, as well as seeing and hearing things while awake.

My wife took me back to the ER 5 times between 11/15 and 12/31/09 when she lost it with the ER doctor who insisted I still had meningitis. WARNING: do NOT peeve a Russian woman – she insisted on an MRI and she won the battle against “We have already done 3 CT scans. An MRI will not show anything different.” They discovered I had pituitary apoplexy (like a tumor on the pituitary gland), and I discovered what having a great partner was. They told her I would have been dead within 2 weeks, from lack of hormones, had she not forced their hand. I was given prednisone, dilaudid, testosterone, and sent on my way.

Fortunately, I was referred to Swedish Neuroscience Institute in February 2010 for treatment. They did further testing and found that the tumor on my pituitary gland had bled out into my spinal fluid and dried up (rare), and that is what the ER had detected as meningitis. They also did testing and found I had Diabetes Insipidus (a “rare disease” – remember this, and the 6% having sleep paralysis), which is what caused my severe thirst and urination (told you it would come back up). When asked by my wife if I would ever regain function of my pituitary gland, the specialist said “99.9% chance no.” (So 0.1% I would – remember this.)

Fast forward a year to May of 2011, and all of a sudden I was bloating up like a blueberry around my neck, back, and head. After seeing all my usual doctors, and visiting the ER a couple times, I was referred to an allergist who found nothing I was allergic to, but decided he should kill off my immune system because my body was “fighting itself for no reason.” On that, I decided to get a 2nd opinion, and went to Dr. Garrison Ayars. He looked at all my records over a 2 week period (literally, all of them), and suggested that maybe one of the pituitary specialists I was seeing might consider that maybe they were over-treating me. 3% of the population is apparently ultra-sensitive to prednisone treatment… and even my 5mg dose (considered “nothing” by endocrinologists) was causing Cushing Syndrome. This also led to more testing by Dr. Ahmadian, and as of today, I produce enough cortisol for normal daily living, but not for stress (remember the 0.1% I mentioned above?) I have gone from taking 22 drugs to small doses of only 7.

Summer of 2012 came with headaches. Again, lots of doctors and nurse practitioners, and suggested “remedies” ranging from practicing yoga to reducing spinal fluid pressure. A year and a half later, and I have figured out that a rise in barometric pressure likely has something to do with it. Still looking into this one.

Recently, I have been struggling with a weight  loss plateau, and myalgia caused by antibodies attacking good cells in my joints and muscles. That is a still unresolved story to be resolved.I still have a variety of issues, but I am finding great solace in understanding the drugs I need to take, diets, GMOs, and chemical foods. But that is left for the next post. Let us leave it as the apostle Paul did in 2 Corinthians 12:5-10 – “Thank you, God.”