Lauren's Medical Expenses
Donation protected
My name is Lauren Heredia. I like to call myself Antibody Ninja Girl. I have a rare condition called APS Type 2 aka Autoimmune Polyendocrine Syndrome Type 2. Autoimmune diseases are a result of your body's immune system attacking healthy cells. Depending on the type, an autoimmune disease can affect one or many different types of body tissue. My particular situation is snowballing.
From age 12 I have struggled with autoimmune diseases. A strong athletic pre-teen knocked to the ground day after day. It took nearly a year and many tests to determine at that time that I have Hashimoto's Thyroiditis which is a disease that causes low thyroid hormones as well as an enlarged thyroid. I am lucky in that my goiter has not grown and my medication level has not changed since 2009 which was only a slight increase from 2000. But that diagnosis didn't cover all the bases.
I was referred to an endocrinologist, a doctor who specializes in the endocrine (hormone) system, at the age of 13. She monitored my thyroid, but continued to tell my parents the full picture wasn't clear. I had symptoms of Type 1 diabetes, but no proven test results so I was simply advised to pay close attention to my lifestyle choices. Anytime I had sugar I would end up with a strangely low blood sugar 2-4 hours later. I just avoided sugar as much as I could as I grew to be a teenager.
I suddenly began to lose weight my junior year of high school. I went from 120 lbs down to 105 lbs in a matter of a couple of months; no change in eating or activity levels. 2 years later I gained it back. No big deal right? It evened out. I was/had been an avid runner throughout it all after growing up playing nearly every sport possible.
I hit a wall after running my first half marathon.
I came down with a really bad cold. I was given antibiotics, but they had no affect. I went back to the doctor who then gave me an inhaler and new antibiotics. Again, no help. Finally I was given a third antibiotic coupled with a round of steriods. Within 3 days I could not see. Everything was a blur. I barely ate. My back was in horrible pain. My sight began to worsen and I knew I needed to do something. Calling the doctor lead to an emergency room visit. There my blood sugar was 426 mg/dL (normal is 79.2-110 mg/dL). My father passed away due to complications of Type 1 diabetes so I knew this wasn't good. Soon the diagnosis came. Crash course in nutrition. Whoa!
A year or so passed and yet another obstacle was put in my way. I began having excruciating belly pains. I couldn't even move. I would just roll up in the fetal position crying in agonizing pain. No clear medical reason could be found until I went to a urologist. There I was diagnosed with a condition called interstitional cystitis. IC is the loss of the lining in the bladder causing symptoms similar to a serious urinary tract infection. This causes inflammation of the bladder as well as ulcers in the lining. With medication and episodes of remission that has become more manageable.
Cut to another two years later and boom. Another strange problem arose. I began losing my ability to think clearly. I was often unable to decipher numbers and letters as if I were a child just learning. I was found unconscious in my closet at one point. This was all thought to be extreme blood sugars lows causing seizures. But with tight blood sugar control it became obvious this was unrelated. I was sent to the Mayo clinic in Arizona. After a few weeks of vigorious testing all they could determine for sure was epilepsy. Idiopathic, meaning they do not know why. Some of my tests were borderline so I was to return two months later. Again, little was done due to lack of solid test results. I was continuing to decline in health yet no one knew why. I was told to begin the process of applying for disability because the seizures would not stop.
In an effort to get down to the source of it all I was sent to more doctors. A biopsy looking for Lupus came out with a bizarre result. I had something called Disemminated Histoplasmosis. This is a rare fungal infection that is usually found in the Ohio River valley. I had never been east of Dallas, TX so where I had contracted the infection is still unknown. It is an inhaled fungus so it causes fibroids in the lungs. Disseminated means it traveled throughout my body causing fibroids in many connective tissues. The treatment lead to a weeklong hospital stay with strong IV antifungal meds. That was followed by a year of strong medications to kill it. Although the fungal infection is treated it does lie dormant indefinitely. Even after being treated and cleared by infectious disease doctors many symptoms continued unrelated to all that my body had gone through.
A few more doctors lead to more diagnoses. To save you an even longer story, in a matter of a few years I was diagnosed with Celiac disease, Lupus, chronic atrophic gastritis, inflammatory bowel disease, pernicious anemia, pancreatic insufficiency, and the most threatening diagnosis to come was gastroparesis. Let me break these down for you. Lupus is a disease of the connective tissues causing damage to any part of the body; my problems tend to be my skin, joints/bones, muscles, and eyes. Celiac disease is a condition causing an immune reaction to a protein called gluten found in wheat, barley, and rye. This response causes damage to the small intestine. Chronic atrophic gastritis is a lifelong struggle with episodes of stomach inflammation. Inflammation also was found in my large intestine determining the bowel disease. Pernicious anemia is the loss of the mucus lining of the stomach which leads to malabsorption. In that was a stumble upon an alkaline stomach; where we all actually need acid. At least I don't get heartburn, eh? With diabetes you would think "Of course there is pancreatic insuffciency" but that would be wrong. The pancreas also produces digestive enzymes. I was found to have none. Seems my pancreas is only taking up space. Then the dreaded gastroparesis.
Gastroparesis is a rare disease causing delayed emptying of the stomach up to full paralysis of the stomach. This causes pain, nausea, vommitting, constipation, diarrhea, distension of the belly, bloating, gas and more. This disease is often caused when the vagus nerve is damaged. Normally your stomach works much like a blender; contracting to break up food and move it along the GI tract. With gastroparesis this process is slowed or stops altogether. Where food is connected to not only nutrition but every other thing in our lives you can imagine this can be torturous.
None of these diseases are curable. Many of them can be treated to help quality of life and slow the progress of the diseases. As you can see from the unreal list above treatment and care can add up dollar signs quickly. My husband works two jobs. He plans to return to school in the fall once again to advance. I have disability which pays less than a minimum wage paying job these days. We live in a modest apartment. We do not have cable, our computer is 7 years old barely typing these words in, my vehicle is 16 years old, many of our clothes are bought by family members, and we rarely go out unless it is free or nearly free. I am limited to a very small amount of very specific foods that are a little more expensive than your typical grocery store item. My nightstand and
bathroom medicine cabinets might as well be a pharmacy.
My schedule rotates around doctor appointments and taking care of my miracle child born in the midst of chaos. He is a true blessing!! 10 years old. I have little energy for extra activity often stretching myself too thin. No pun intended there. I barely weigh 100 lbs on a good day and am fighting to keep that on. The stress of this is a pressure far beyond our worst fears. I want to lift some pressure off my husband and son.
I feel stuck not being able to give more to them. With your generous donations I will be able to help pay for my treatment. I need monthly, expensive medications and medical supplies. I have co-payments and medical bills busting open my file folders and storage boxes. Yes, storage; there is only so much you can pay/do at a time. In addition it has become increasingly harder to sleep laying down. Food is my enemy and lying down is my white flag. It can be incredibly painful yet we all need sleep.
I am hoping to buy an adjustable bed because the wedge pillows, extra blankets and bed risers are not helping. They often make things worse due to the awkward positioning.
It would be such an amazing gift to give my family some peace of mind. It is not only my struggle, it is everyone involved who also struggles. I would be so honored and thankful to lift some burdens from their shoulders. My husband and I avoid talking about the logistic side of things simply because it is insurmountable. I promise to not only spread awareness about these diseases but also pay it forward. So many struggle like I do and we all need a voice. Your help would mean the world to my family and me. It may also give my husband a few days off to see his extended family.
Thank you for taking time out of your day to read my story. Maybe you know someone in a similar situation or worse. Just, THANK YOU
From age 12 I have struggled with autoimmune diseases. A strong athletic pre-teen knocked to the ground day after day. It took nearly a year and many tests to determine at that time that I have Hashimoto's Thyroiditis which is a disease that causes low thyroid hormones as well as an enlarged thyroid. I am lucky in that my goiter has not grown and my medication level has not changed since 2009 which was only a slight increase from 2000. But that diagnosis didn't cover all the bases.
I was referred to an endocrinologist, a doctor who specializes in the endocrine (hormone) system, at the age of 13. She monitored my thyroid, but continued to tell my parents the full picture wasn't clear. I had symptoms of Type 1 diabetes, but no proven test results so I was simply advised to pay close attention to my lifestyle choices. Anytime I had sugar I would end up with a strangely low blood sugar 2-4 hours later. I just avoided sugar as much as I could as I grew to be a teenager.
I suddenly began to lose weight my junior year of high school. I went from 120 lbs down to 105 lbs in a matter of a couple of months; no change in eating or activity levels. 2 years later I gained it back. No big deal right? It evened out. I was/had been an avid runner throughout it all after growing up playing nearly every sport possible.
I hit a wall after running my first half marathon.
I came down with a really bad cold. I was given antibiotics, but they had no affect. I went back to the doctor who then gave me an inhaler and new antibiotics. Again, no help. Finally I was given a third antibiotic coupled with a round of steriods. Within 3 days I could not see. Everything was a blur. I barely ate. My back was in horrible pain. My sight began to worsen and I knew I needed to do something. Calling the doctor lead to an emergency room visit. There my blood sugar was 426 mg/dL (normal is 79.2-110 mg/dL). My father passed away due to complications of Type 1 diabetes so I knew this wasn't good. Soon the diagnosis came. Crash course in nutrition. Whoa!
A year or so passed and yet another obstacle was put in my way. I began having excruciating belly pains. I couldn't even move. I would just roll up in the fetal position crying in agonizing pain. No clear medical reason could be found until I went to a urologist. There I was diagnosed with a condition called interstitional cystitis. IC is the loss of the lining in the bladder causing symptoms similar to a serious urinary tract infection. This causes inflammation of the bladder as well as ulcers in the lining. With medication and episodes of remission that has become more manageable.
Cut to another two years later and boom. Another strange problem arose. I began losing my ability to think clearly. I was often unable to decipher numbers and letters as if I were a child just learning. I was found unconscious in my closet at one point. This was all thought to be extreme blood sugars lows causing seizures. But with tight blood sugar control it became obvious this was unrelated. I was sent to the Mayo clinic in Arizona. After a few weeks of vigorious testing all they could determine for sure was epilepsy. Idiopathic, meaning they do not know why. Some of my tests were borderline so I was to return two months later. Again, little was done due to lack of solid test results. I was continuing to decline in health yet no one knew why. I was told to begin the process of applying for disability because the seizures would not stop.
In an effort to get down to the source of it all I was sent to more doctors. A biopsy looking for Lupus came out with a bizarre result. I had something called Disemminated Histoplasmosis. This is a rare fungal infection that is usually found in the Ohio River valley. I had never been east of Dallas, TX so where I had contracted the infection is still unknown. It is an inhaled fungus so it causes fibroids in the lungs. Disseminated means it traveled throughout my body causing fibroids in many connective tissues. The treatment lead to a weeklong hospital stay with strong IV antifungal meds. That was followed by a year of strong medications to kill it. Although the fungal infection is treated it does lie dormant indefinitely. Even after being treated and cleared by infectious disease doctors many symptoms continued unrelated to all that my body had gone through.
A few more doctors lead to more diagnoses. To save you an even longer story, in a matter of a few years I was diagnosed with Celiac disease, Lupus, chronic atrophic gastritis, inflammatory bowel disease, pernicious anemia, pancreatic insufficiency, and the most threatening diagnosis to come was gastroparesis. Let me break these down for you. Lupus is a disease of the connective tissues causing damage to any part of the body; my problems tend to be my skin, joints/bones, muscles, and eyes. Celiac disease is a condition causing an immune reaction to a protein called gluten found in wheat, barley, and rye. This response causes damage to the small intestine. Chronic atrophic gastritis is a lifelong struggle with episodes of stomach inflammation. Inflammation also was found in my large intestine determining the bowel disease. Pernicious anemia is the loss of the mucus lining of the stomach which leads to malabsorption. In that was a stumble upon an alkaline stomach; where we all actually need acid. At least I don't get heartburn, eh? With diabetes you would think "Of course there is pancreatic insuffciency" but that would be wrong. The pancreas also produces digestive enzymes. I was found to have none. Seems my pancreas is only taking up space. Then the dreaded gastroparesis.
Gastroparesis is a rare disease causing delayed emptying of the stomach up to full paralysis of the stomach. This causes pain, nausea, vommitting, constipation, diarrhea, distension of the belly, bloating, gas and more. This disease is often caused when the vagus nerve is damaged. Normally your stomach works much like a blender; contracting to break up food and move it along the GI tract. With gastroparesis this process is slowed or stops altogether. Where food is connected to not only nutrition but every other thing in our lives you can imagine this can be torturous.
None of these diseases are curable. Many of them can be treated to help quality of life and slow the progress of the diseases. As you can see from the unreal list above treatment and care can add up dollar signs quickly. My husband works two jobs. He plans to return to school in the fall once again to advance. I have disability which pays less than a minimum wage paying job these days. We live in a modest apartment. We do not have cable, our computer is 7 years old barely typing these words in, my vehicle is 16 years old, many of our clothes are bought by family members, and we rarely go out unless it is free or nearly free. I am limited to a very small amount of very specific foods that are a little more expensive than your typical grocery store item. My nightstand and
bathroom medicine cabinets might as well be a pharmacy.
My schedule rotates around doctor appointments and taking care of my miracle child born in the midst of chaos. He is a true blessing!! 10 years old. I have little energy for extra activity often stretching myself too thin. No pun intended there. I barely weigh 100 lbs on a good day and am fighting to keep that on. The stress of this is a pressure far beyond our worst fears. I want to lift some pressure off my husband and son.
I feel stuck not being able to give more to them. With your generous donations I will be able to help pay for my treatment. I need monthly, expensive medications and medical supplies. I have co-payments and medical bills busting open my file folders and storage boxes. Yes, storage; there is only so much you can pay/do at a time. In addition it has become increasingly harder to sleep laying down. Food is my enemy and lying down is my white flag. It can be incredibly painful yet we all need sleep.
I am hoping to buy an adjustable bed because the wedge pillows, extra blankets and bed risers are not helping. They often make things worse due to the awkward positioning.
It would be such an amazing gift to give my family some peace of mind. It is not only my struggle, it is everyone involved who also struggles. I would be so honored and thankful to lift some burdens from their shoulders. My husband and I avoid talking about the logistic side of things simply because it is insurmountable. I promise to not only spread awareness about these diseases but also pay it forward. So many struggle like I do and we all need a voice. Your help would mean the world to my family and me. It may also give my husband a few days off to see his extended family.
Thank you for taking time out of your day to read my story. Maybe you know someone in a similar situation or worse. Just, THANK YOU
Organizer
Lauren Heredia
Organizer
North Richland Hills, TX
