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My daughter, Marcy, lives with a Chronic Disease called Mixed Connective Tissue Disease and Autonomic Dysfunction. Her chronic disease(s) are complex and multilayered. It took years of tests, years of traveling to different specialists to finally get the diagnoses. Unfortunately even with a diagnosis she will always be going through tests. We (her mom, family) just want to make things as easy as possible, no matter what it’s going to be stressful, but the less stress she has, the more quality she’ll have in her life. MCTD is a combination of 3 different Autoimmune diseases, Lupus, Scleroderma, and Polymyositis. Marcy has had long-term chronic health issues, on and off for over 20 years, but due to the complex nature of these diseases/illnesses, she didn’t receive a diagnosis until October 2010, from a Rheumatologist at Cleveland Clinic in Ohio. Marcy’s health and “flares,” (term used to describe an exacerbation of an illness) have increased in severity and length of time as she gets older. The severity and complications from these flairs have affected several areas in her body, causing unrelenting painful symptoms at times. They can cause issues with her internal organs, skin, blood vessels, inflammation, eyes, neurological, sensory and more. Starting around 2001, Marcy began to develop health problems, which were not ordinary and left the doctors perplexed with no answers as to why. Some of these health problems include, but are not limited to a non-healing left hip stress fracture from jogging (which is now healed), fevers of unknown origin lasting eight plus months, chronic Epstein-Barr virus, pneumonia(s), polyarthritis. Multiple GI issues, including IBS C & D, recurring Ileus formation, GERD, Hiatal Hernia, chronic nausea, GI parasite, dysmotility causing severe abdominal pain, bloating, and hardening of the abdomen. The abdominal bloating and swelling encroaches and pushes up on her diaphragm causing shortness of breath, sleep apnea and at times the need for the use of a temporary C-Pap.
ADDITIONAL INFO ON MARCY’S PHYSICAL ISSUES & DIAGNOSES
There are different types of Lupus: Cutaneous, Systemic, Drug Induced and Neonatal Lupus. Each type affects the body differently. Marcy suffers from systemic lupus, which is the most common form of lupus—it’s what most people mean when they refer to Lupus. Systemic lupus can be mild or severe. Below is a brief description of some of the more severe complications that involve major organ systems. Inflammation of the kidneys—called lupus nephritis. An increase in blood pressure in the lungs—called pulmonary hypertension. Inflammation of the nervous system and brain can cause memory problems, confusion, headaches, and strokes. In the Lupus community, it’s called, “Lupus Fog.” Inflammation in the brain’s blood vessels can cause high fevers, seizures, and behavioral changes. Hardening of the arteries or coronary artery disease—the buildup of deposits on coronary artery walls—can lead to a heart attack.
There are two main types of scleroderma: Localized and Systemic.
The systemic forms can affect any part of the body (skin, blood vessels, and internal organs). The systemic forms are also referred to as systemic sclerosis. The localized forms are morphea and linear. They affect the skin (and sometimes the underlying muscles or bones), and occasionally cause a few other symptoms. Marcy has systemic, (which always leads to some internal organ involvement) but at present hers is without hardening of the skin, this is referred as Systemic Sclerosis Sine Scleroderma (SSSS). Marcy’s scleroderma has affected the organs and tissues of her GI System.
As of July 2015, she has had no signs or symptoms of Polymyositis. Polymyositis (PM) is an inflammatory disorder in which muscle tissue becomes inflamed and deteriorates, causing weakness and pain. It is one of the several types of inflammatory muscle disease or myopathy. Others include dermatomyositis (DM) and inclusion body myositis. Her Rheumatologist believes that both of her pregnancies, in 1991 and 1994 were high risk related to systemic lupus (but were not known at the time).
Two major digestive issues she suffers from are Small Bowel Dysmotility and Chronic Idiopathic Pseudo-Obstruction (CIP). They’re both considered rare diseases by the National Organization for Rare Disorders (NORD). Her specialist, Dr. Braden Kuo a Neurogastroenterologist at Mass General Hospital believes it is caused by a combination of Lupus, Scleroderma and Autonomic Dysfunction. The digestive problems are muscular and neurological in nature. The digestive system is responsible for 70% of your immune system. There are many complications, along with the GI issues that are involved. She hasn’t been able to eat anything by mouth, except clear liquids and sucking on hard candy, since June 2015. She receives Total Parenteral Nutrition (TPN). The TPN is given through a Peripheral Inserted Central Catheter (PICC). The PICC is inserted in the arm and goes into the Superior Vena Cava and is meant for prolonged use for IV needs. This is her third PICC, which was inserted on 8/13/2016-related to a Staph infection coming from her Port-a-Cath (different type of Central line, placed under the skin in the chest wall) that was placed 1/21/2016. The Port was removed 2/15/2016, and she was treated for four weeks with IV antibiotics. Besides TPN her PICC is used for weekly blood draws, daily IV meds, IV Immunoglobulin every other week. She has been hospitalized three times in the last three months.
HOW THE DISEASE AFFECTS HER PERSONAL LIFE:
My daughter's chronic health diseases and issues have had a major impact on her life physically, mentally, emotionally, cognitively. My once non-stop, go-getter daughter, wife, mother, nurse, friend, exercise fanatic, struggles to figure out where she fits in anymore. There are days when the physical pain impacts her ability to do simple tasks and days when the emotional pain impacts her just the same. There are times, getting up to brush her teeth is a struggle, related to the Raynaud’s. Her feet hurt to walk into the bathroom; her hands kill to hold her toothbrush. The pain hurts so bad at times; she’s in tears. Her heart is so painful (not cardiac pain, emotional pain), but my daughter is a fighter, and she doesn’t give up. Marcy will continue to fight and do what needs to be done, so hopefully at some point, she’ll be able to do at least some of the things she loves.
The impact on her relationships she had before her flair, are sometimes more painful for her to deal with than this horrific disease. Marcy had a Lupus flare causing her to stop working as an RN, which she loved doing, on February 23,2009. About three months later, May 25, 2009, her 17-year-old son, my grandson, Zachary died at home from an accidental prescription drug combination. The pills were given to him at school by a “friend.” It was, still is and forever will be devastating, she will never be the same.
Marcy’s health started to decline even more around the end of December 2009. She finally ended up being hospitalized at Lahey Clinic from 2/2/2010-2/26/2010. She came home with a tube in her nose for nutrition and about a month later was able to start slowly eating again. It was going to be a long road to recovery, and she didn’t know what her recovery would look like, but she kept going, one day at a time. Marcy had been with her husband for ten years. She had two boys of her own and two step-daughters. Her husband was loving and helped take care of her during the beginning of this flair. This was not her first flair, health complication or hospitalization since she had been with her husband, this was part of their lives since they met. Marcy was unable to take on the responsibility of paying the bills, keeping track of their budget and the marital finances like she did before she got sick so, her husband took that role over. Finances were discussed, a budget was made, and Marcy qualified for Social Security Disability Income (SSDI). These diseases live and feed off of stress, as her then-husband was well aware of. During the time period of March 2010 through February 2011, Marcy’s husband would manipulate and deceive her into thinking he had her back and they would "get through this together.” All the while he was philandering, pilfering marital finances, lying to her, lying to the kids, lying to others. He was malevolent, malicious, mean, abusive, etc. He caused a lot of damage, not just because of his painful actions, but the fact that he took advantage, destroyed my daughter's’ credit, took all of her retirement funds, all while she was sick and grieving the loss of her son. She was devastated, as there was no warning, just more heartbreak and loss. Marcy ended up kicking her husband out and filing divorce for many reasons. Shortly after Marcy kicked him out, she was notified that all the bills her husband had been telling her he was paying, were not getting paid. Her home (it was her home she had purchased as a single parent) was in foreclosure, her electricity, cable, cell phones were being shut off, there was no oil in the tank to heat the house. As he was going to Costa Rica in April, from funds he borrowed from his retirement, she was trying to keep food in the fridge for her son.There were times he wouldn’t let her see his youngest daughter, who she had such a strong bond with since the age of 2. There’s so much more, but I’d be typing a book and the point is…What family they had after Zachary died was destroyed. My daughter has now lost her home, is living somewhere temporarily and is looking for a new place to rent, needs assistance with paying for additional insurance along with her Medicare, help with paying for other medical costs not covered by insurance, living expenses and holistic medicine (Biofeedback Cognitive Behavioral Therapy) as recommended by Dr. Braden Kuo, Neurogastroenterologist at Mass Gen. At times she has to stay at a hotel near the hospital, or wherever she is sent either the night before appointment or the night after, or both depending on what’s involved, because it is too taxing on her system to ride in the car before or after, travel expenses as well as she is no longer able to drive. She has not driven a car for over a year now. Any help would be appreciated! Please help, so she can find her way back to a normal life.
ADDITIONAL INFO ON MARCY’S PHYSICAL ISSUES & DIAGNOSES
There are different types of Lupus: Cutaneous, Systemic, Drug Induced and Neonatal Lupus. Each type affects the body differently. Marcy suffers from systemic lupus, which is the most common form of lupus—it’s what most people mean when they refer to Lupus. Systemic lupus can be mild or severe. Below is a brief description of some of the more severe complications that involve major organ systems. Inflammation of the kidneys—called lupus nephritis. An increase in blood pressure in the lungs—called pulmonary hypertension. Inflammation of the nervous system and brain can cause memory problems, confusion, headaches, and strokes. In the Lupus community, it’s called, “Lupus Fog.” Inflammation in the brain’s blood vessels can cause high fevers, seizures, and behavioral changes. Hardening of the arteries or coronary artery disease—the buildup of deposits on coronary artery walls—can lead to a heart attack.
There are two main types of scleroderma: Localized and Systemic.
The systemic forms can affect any part of the body (skin, blood vessels, and internal organs). The systemic forms are also referred to as systemic sclerosis. The localized forms are morphea and linear. They affect the skin (and sometimes the underlying muscles or bones), and occasionally cause a few other symptoms. Marcy has systemic, (which always leads to some internal organ involvement) but at present hers is without hardening of the skin, this is referred as Systemic Sclerosis Sine Scleroderma (SSSS). Marcy’s scleroderma has affected the organs and tissues of her GI System.
As of July 2015, she has had no signs or symptoms of Polymyositis. Polymyositis (PM) is an inflammatory disorder in which muscle tissue becomes inflamed and deteriorates, causing weakness and pain. It is one of the several types of inflammatory muscle disease or myopathy. Others include dermatomyositis (DM) and inclusion body myositis. Her Rheumatologist believes that both of her pregnancies, in 1991 and 1994 were high risk related to systemic lupus (but were not known at the time).
Two major digestive issues she suffers from are Small Bowel Dysmotility and Chronic Idiopathic Pseudo-Obstruction (CIP). They’re both considered rare diseases by the National Organization for Rare Disorders (NORD). Her specialist, Dr. Braden Kuo a Neurogastroenterologist at Mass General Hospital believes it is caused by a combination of Lupus, Scleroderma and Autonomic Dysfunction. The digestive problems are muscular and neurological in nature. The digestive system is responsible for 70% of your immune system. There are many complications, along with the GI issues that are involved. She hasn’t been able to eat anything by mouth, except clear liquids and sucking on hard candy, since June 2015. She receives Total Parenteral Nutrition (TPN). The TPN is given through a Peripheral Inserted Central Catheter (PICC). The PICC is inserted in the arm and goes into the Superior Vena Cava and is meant for prolonged use for IV needs. This is her third PICC, which was inserted on 8/13/2016-related to a Staph infection coming from her Port-a-Cath (different type of Central line, placed under the skin in the chest wall) that was placed 1/21/2016. The Port was removed 2/15/2016, and she was treated for four weeks with IV antibiotics. Besides TPN her PICC is used for weekly blood draws, daily IV meds, IV Immunoglobulin every other week. She has been hospitalized three times in the last three months.
HOW THE DISEASE AFFECTS HER PERSONAL LIFE:
My daughter's chronic health diseases and issues have had a major impact on her life physically, mentally, emotionally, cognitively. My once non-stop, go-getter daughter, wife, mother, nurse, friend, exercise fanatic, struggles to figure out where she fits in anymore. There are days when the physical pain impacts her ability to do simple tasks and days when the emotional pain impacts her just the same. There are times, getting up to brush her teeth is a struggle, related to the Raynaud’s. Her feet hurt to walk into the bathroom; her hands kill to hold her toothbrush. The pain hurts so bad at times; she’s in tears. Her heart is so painful (not cardiac pain, emotional pain), but my daughter is a fighter, and she doesn’t give up. Marcy will continue to fight and do what needs to be done, so hopefully at some point, she’ll be able to do at least some of the things she loves.
The impact on her relationships she had before her flair, are sometimes more painful for her to deal with than this horrific disease. Marcy had a Lupus flare causing her to stop working as an RN, which she loved doing, on February 23,2009. About three months later, May 25, 2009, her 17-year-old son, my grandson, Zachary died at home from an accidental prescription drug combination. The pills were given to him at school by a “friend.” It was, still is and forever will be devastating, she will never be the same.
Marcy’s health started to decline even more around the end of December 2009. She finally ended up being hospitalized at Lahey Clinic from 2/2/2010-2/26/2010. She came home with a tube in her nose for nutrition and about a month later was able to start slowly eating again. It was going to be a long road to recovery, and she didn’t know what her recovery would look like, but she kept going, one day at a time. Marcy had been with her husband for ten years. She had two boys of her own and two step-daughters. Her husband was loving and helped take care of her during the beginning of this flair. This was not her first flair, health complication or hospitalization since she had been with her husband, this was part of their lives since they met. Marcy was unable to take on the responsibility of paying the bills, keeping track of their budget and the marital finances like she did before she got sick so, her husband took that role over. Finances were discussed, a budget was made, and Marcy qualified for Social Security Disability Income (SSDI). These diseases live and feed off of stress, as her then-husband was well aware of. During the time period of March 2010 through February 2011, Marcy’s husband would manipulate and deceive her into thinking he had her back and they would "get through this together.” All the while he was philandering, pilfering marital finances, lying to her, lying to the kids, lying to others. He was malevolent, malicious, mean, abusive, etc. He caused a lot of damage, not just because of his painful actions, but the fact that he took advantage, destroyed my daughter's’ credit, took all of her retirement funds, all while she was sick and grieving the loss of her son. She was devastated, as there was no warning, just more heartbreak and loss. Marcy ended up kicking her husband out and filing divorce for many reasons. Shortly after Marcy kicked him out, she was notified that all the bills her husband had been telling her he was paying, were not getting paid. Her home (it was her home she had purchased as a single parent) was in foreclosure, her electricity, cable, cell phones were being shut off, there was no oil in the tank to heat the house. As he was going to Costa Rica in April, from funds he borrowed from his retirement, she was trying to keep food in the fridge for her son.There were times he wouldn’t let her see his youngest daughter, who she had such a strong bond with since the age of 2. There’s so much more, but I’d be typing a book and the point is…What family they had after Zachary died was destroyed. My daughter has now lost her home, is living somewhere temporarily and is looking for a new place to rent, needs assistance with paying for additional insurance along with her Medicare, help with paying for other medical costs not covered by insurance, living expenses and holistic medicine (Biofeedback Cognitive Behavioral Therapy) as recommended by Dr. Braden Kuo, Neurogastroenterologist at Mass Gen. At times she has to stay at a hotel near the hospital, or wherever she is sent either the night before appointment or the night after, or both depending on what’s involved, because it is too taxing on her system to ride in the car before or after, travel expenses as well as she is no longer able to drive. She has not driven a car for over a year now. Any help would be appreciated! Please help, so she can find her way back to a normal life.
Organizer and beneficiary
Marcy E Bechtold Black
Beneficiary