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Never in a million years would I have ever guessed that I would be someone who would be starting a gofundme instead of the person donating to it. Since September I have lost a lot of of my ability to function normally. I have been diagnosed with three related medical conditions, one of which is life-threatening without treatment.
Who am I? I am a loving mother to two wonderful kids who are my world and wife to a man who has stood firmly by my side through multiple bouts of this disabling illness. I have always felt passionate about children and gave up ideas of using my college degree to continue a career in psychology after the birth of my first child when I realized that motherhood was everything I had always wanted. I became a nanny and babysitter to help pay bills which allowed me to spend my day surrounded by kids, a dream come true! As my kids got older I became comitted to homeschooling them because I wanted to share my passion for learning with them while enabling them to follow their own passions and dreams. From the start I took the kids to museums, playgrounds, nature reserves and more. There is so much beauty and joy in the world and I wanted my kids to soak up every moment possible. Of course, not everything was "easy" and a lot of things became clearer recently when my son received his autism diagnosis and we realized that we both had a genetic condition. Even with all of the hardship we have gone through, I am determined to give my all to my family.
This is why I have swallowed my pride to ask you for help. It is really hard to share all of this information with family, friends, and complete strangers but I know that if I am going to get well when more than 25% of people with this disorder are completely disabled and use a wheelchiar, than I am going to have to follow through on everything my doctors tell me to do.
My Illnesses
All of my conditions are interrelated and often diagnosed together. I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTs) in November but it is believed that I have had the condition in a more mild form since high school. POTs is basically a neurological condition that sends my heart-rate through the roof anytime I stand or do any activity and I am always out of breath and dizzy and falling. Not the best situation with two small kids at home. I have periods where I am fairly normal but a bout of an illness others wouldn't notice can leave me disabled with a long road to recovery. One cause of POTS is that my doctors strongly suspect that my son and I have is Ehler Danlos - hypermobility type. This is a condition that causes severe pain, joints move out of place easily causing injury, and basically my body is falling apart due to faulty collagen. This is a genetic condition and it is already apparent that my sweet 5 year old son has it too. He gets days with the same exhaustion and overwhelming pain that I have had since childhood. My heart is breaking for him but I know that we will do everything we can to make his life easier than mine was. I thought I had a full plate but then recently I started having chronic anaphylaxis! Several emergency visits later and a few allergy appointments and it looks like I have Mast Cell Activation Disorder (MCAD). MCAD and Ehler Danlos are associated conditions that are commonly found together and can both cause my POTs.
So why am I starting this gofundme? My husband is the only one working and we are struggling to pay all of our medical bills. I see multiple doctors (a neurologist, allergist, geneticist, primary care doctor, chiropractor, 2 physical therapist, and more) and take a lot of medications and doctor-prescribed supplements. I need help on my really bad days and we cannot afford a sitter, plus we need help for when I have one of many appointments. Expenses are adding up quickly!
Please, Please help me so that I can afford to complete the recommended treatments that I cannot otherwise afford and so that I can help my children receive treatment before their symptoms become as bad as mine.
Who am I? I am a loving mother to two wonderful kids who are my world and wife to a man who has stood firmly by my side through multiple bouts of this disabling illness. I have always felt passionate about children and gave up ideas of using my college degree to continue a career in psychology after the birth of my first child when I realized that motherhood was everything I had always wanted. I became a nanny and babysitter to help pay bills which allowed me to spend my day surrounded by kids, a dream come true! As my kids got older I became comitted to homeschooling them because I wanted to share my passion for learning with them while enabling them to follow their own passions and dreams. From the start I took the kids to museums, playgrounds, nature reserves and more. There is so much beauty and joy in the world and I wanted my kids to soak up every moment possible. Of course, not everything was "easy" and a lot of things became clearer recently when my son received his autism diagnosis and we realized that we both had a genetic condition. Even with all of the hardship we have gone through, I am determined to give my all to my family.
This is why I have swallowed my pride to ask you for help. It is really hard to share all of this information with family, friends, and complete strangers but I know that if I am going to get well when more than 25% of people with this disorder are completely disabled and use a wheelchiar, than I am going to have to follow through on everything my doctors tell me to do.
My Illnesses
All of my conditions are interrelated and often diagnosed together. I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTs) in November but it is believed that I have had the condition in a more mild form since high school. POTs is basically a neurological condition that sends my heart-rate through the roof anytime I stand or do any activity and I am always out of breath and dizzy and falling. Not the best situation with two small kids at home. I have periods where I am fairly normal but a bout of an illness others wouldn't notice can leave me disabled with a long road to recovery. One cause of POTS is that my doctors strongly suspect that my son and I have is Ehler Danlos - hypermobility type. This is a condition that causes severe pain, joints move out of place easily causing injury, and basically my body is falling apart due to faulty collagen. This is a genetic condition and it is already apparent that my sweet 5 year old son has it too. He gets days with the same exhaustion and overwhelming pain that I have had since childhood. My heart is breaking for him but I know that we will do everything we can to make his life easier than mine was. I thought I had a full plate but then recently I started having chronic anaphylaxis! Several emergency visits later and a few allergy appointments and it looks like I have Mast Cell Activation Disorder (MCAD). MCAD and Ehler Danlos are associated conditions that are commonly found together and can both cause my POTs.
So why am I starting this gofundme? My husband is the only one working and we are struggling to pay all of our medical bills. I see multiple doctors (a neurologist, allergist, geneticist, primary care doctor, chiropractor, 2 physical therapist, and more) and take a lot of medications and doctor-prescribed supplements. I need help on my really bad days and we cannot afford a sitter, plus we need help for when I have one of many appointments. Expenses are adding up quickly!
Please, Please help me so that I can afford to complete the recommended treatments that I cannot otherwise afford and so that I can help my children receive treatment before their symptoms become as bad as mine.