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7/4/2016 Latest post:
Welcome to our CaringBridge site. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time when it matters most. I want to thank you for taking the time to remain connected to and supporting of Rich during the difficult times that have recently progressed.
I would like to dedicate this first journal entry to an amazing, strong and courageous man, my husband and friend, Rich. Some of you know of his life's journey, while others may only know a portion, but I would like to share my journey with Rich. It's been almost 26 years now that we have been married and I have to say, we've experienced many trials but also many joys and miracles. Rich has always been a very hard working, dedicated person to his family, friends, and nursing career. Early in our life together, we brought two of the most beautiful, loving, caring, intelligent young ladies (now) into our life. Rich always worked a second job while the girls were young. He wanted the very best for all of us. Then in 1993, we moved "back" to NY, where I originally am from. This is where Rich decided to pursue his passion of working as a nurse. He did it all...CNA training/work, LPN training/work, and BSN training/work. And believe it or not, he even started some of the classes for his masters in nursing. So if Rich wasn't in school or working, his spent time with his family and always working in the yard or around the house. However, after being married about 5 years, Rich's journey with his health issues began. It was thought at the time that he had Crohn's disease, and even to this day they still wonder if he has it or not. But over the course of the following 15 years, he was in the hospital at least 1-2 times a year for bowel obstructions and/or abdonminal surgeries. These surgeries include removal of portions of his bowel, cutting adhesions as his bowels were so inflamed they could have ruptured if he didn't have the surgery and a hernia repair. During one of his admissions for a bowel obstruction, Rich had a grand mal seizure and had to be sent to ICU for monitoring. At that time, the Drs were thinking that a medication interaction caused the seizure. Well, that proved to not be the case...he had developed adult onset epilepsy. As a few more years passed, Rich started to become short of breath and having numbness and tingling in his hands and feet....so asthma and an unknown peripheral neuropathy began. By this time, Rich had finished all of his schooling and was working full-time in the hospitals doing bedside nursing all the way up to charge nurse. No more second job as that free time was now spent on traveling to medical facilities to try to figure out the causes of Rich's health issues. While the Drs continued to try to figure out what was wrong, his lung issues continued to worsen, he started to become weaker and fatigued with the neuropathy in his hands and feet worsening, and his seizures were returning. It was finally time for Rich to take "early retirement". This was extremely difficult for him to acknowledge and do. He worked as long as he could and often went to work quite sick. I think the last time he was at work, he had a seizure and his wonderful coworkers, and friends, called me to pick him up and take him to the dr. They knew how upset he would have been if they had had to call the ambulance for him while at work. So this is when his life saving treatments began. He was on 3 liters of continuous oxygen, having to use a walker or wheelchair and had to be put on high dose steroids for quite a while, which eventually caused his pituitary and adrenal glands to stop working. This we didn't find out until he was weaning down off the steroids and he began collapsing due to his blood pressure dropping very low....like 50/30 low. Thank God the emergency room Drs had just been in-serviced on adrenal crisis, otherwise who knows how long it would have taken the Drs to "figure out" what was now wrong. And apparently surviving life saving steroids that shut your adrenals and pituitary down isn't often heard of as we were told most people don't live through it. So i guess we might already be up to miracle #3 between the abdominal, seizure, and adrenal issues and increasing hospital admissions for a few abdominal obstructions but now also for pneumonias and sepsis (blood infections). Finally, I convinced him to try "a 5-minute energy medicine routine" (Donna Eden) and within 6 weeks he had weaned off of oxygen, except for nighttime only and was walking independently or with a cane. This was just months before we moved to MA and the Drs couldn't believe it because over the previous 16 months he had been hospitalized 12 times. Once here though, a big change in medical care...it was good or at least Boston is good. He started getting some answers of what the diseases are. So this is where he now has 2 "umbrella" diagnoses....small fiber/autonomic neuropathy and systemic autoimmune disease. So basically his immune system is attacking his own body and the small fiber neuropathy is causing the nerves going to all of his organs and blood vessels to not work or to "misfire". Last August, he began falling a lot and this seemed to trigger a rapid progression of the diseases. And since November Rich has been hospitalized 6 times and in rehab 2 times. Of those 6 times, I will say 4 times he has been close to passing and 2 of those times, Drs did not expect him to survive. It has been exceptionally difficult to sit bedside watching and wondering if my husband (father and grandfather) was going to survive or not. So thank you God for the many miracles you have shown by pulling Rich through very difficult times. And I also have to recognize Rich and his persistence to fight every day despite how horribly he is suffering. But Please know that I didn't write this for you to feel sorry for Rich. What I want is for us to celebrate Rich and for all of you to know the amazing man that he is. He's still a hard worker....he goes for walks, dotes on his flower gardens and is starting to enjoy freezing fresh fruits and vegetables. He continues to look forward and wants to travel. He has learned how to adapt and still do. I commend his fight, strength and courage. And, his daughters, Ashley and Caitlyn, are his pride and joy and mean the world to him, and his granddaughter, Kadence, is the "Apple of his eye"! Kadence is our little miracle. The beautiful sun that breaks up the darkness. So Rich, Let this be a testimony to you, that you are God's miracle. You have so much to give and teach, so share the miracle that you are and be the "sunshine to someone that needs their darkness lifted away". Be the healer that you are meant to be. I love you and will always support you in your choices as we move forward together on your journey.