Advocates

Too many people are suffering. And I will have no more of it. You doctor’s will not be doing any more of this on my watch.

I’ve always had a passion to help people. I thought of buying an apartment building, or huts and making it into a homeless rehab program. My plan was to allow homeless people to stay there while my team and I trained them on job interview techniques and counseled them on any mental health, emotional issues and/or addictions they may be facing. We would also buy them clothes for interviews and once they got a job, some clothes to sustain them until they got paid and could buy more themselves. We would drive them to their interviews, help them buy their own car and basically cover all of the bases to help the homeless get back on their feet. I still, may do this some day.

I now have another passion. After suffering my whole life with rare chronic conditions, and literally fighting with doctors for over 20 years to take me seriously, I see this is a real problem. I was given the stigma of having migraines and diagnosed with mental health issues at 18 years old. From that point on, whenever I complained of a symptom, and the doctor could not find anything with all of their standard tests, I was told it was a migraine, or it was “All in my head”. After finally getting treated at the Mayo Clinic, I now have diagnoses and vindication for all the physical issues I’ve been experiencing. Rare diseases do not show on doctors standard tests, and rather than doing research to see what may be the problem, they shrug you off. Treating you like a mental case and a hypochondriac.

Through the years I have learned how to speak to doctors and persuade them to perform certain tests. I have learned to do my own research in order to figure out what ails me, and go to the doctor and convince them to test me for what I have figured out. I have, 99% of the time, diagnosed myself correctly. I have also diagnosed friends and family correctly. I would, of course, tell them to go to the doctor to confirm and get proper treatment. But most of the time, they would leave the doctors office telling me I was right.

When my son was younger, he came to me with a horrible stomach ache. It started at his belly button and then moved to his right side. I looked it up and it was a sign of appendicitis. I brought him to the emergency room and they did an x-ray and said he is just constipated. I told them I do not believe he is just constipated. They said he doesn’t have a fever and only registered at 99 degrees. I explained to them that my kids and I do not run fevers, no matter how sick we are. We also usually run just above 97 and 99 and above is a sign we are ill. They sent us home. The rest of the night, my son did not eat and riled around in pain. I decided enough was enough. I went back to the ER, marched in and demanded a CT scan to verify appendicitis. They reluctantly did the CT scan. About an hour later, the doctor walked in the room and said, “He has appendicitis”. I said, “Yes, I knew that”.

At one point, I was feeling unusually weak. I was trying to walk through Walmart leaning on the cart with labored breathing and very little energy to hold myself up. My husband brought me to the emergency room. Of course, their standard test showed I was perfectly fine. The ER doctor diagnosed it as anxiety. My husband, baffled asked, “She was having a hard time walking through Walmart because of anxiety?” This doctor had the audacity to say, “It can be very stressful, there’s a lot of choices”. I said to the doctor, “You are not a psychiatrist and you don’t know me. I do not get anxiety over choices in a store, and I was weak and had labored breathing, not a panic attack”. I left that ER as quickly as possible. The next day I did my own research. I had figured out exactly what it was. I went to my Endocrinologist (who treated me for my thyroid disorder) and told him my symptoms and asked him to test me for adrenal insufficiency. He said he did not believe I had it, but did the test anyway. When the test results came back, I sure enough had adrenal insufficiency. I was treated with steroids and after several months got better.

These are just a couple of the many times I have correctly diagnosed myself or someone I know. My family would like me to go to medical school to become a doctor. They tell me I have a talent and will be able to help people. I am not sure that is the route I want to take. I would be limited to those who live nearby to come to appointments and to those who have the insurance I am under contract with. I can have a free clinic, but would still be limited by location. I’ve come up with I believe, a better solution.

In the many support groups I have joined, I have been in contact with many people going through similar situations as I have. Many of them complain of doctors not taking them seriously, telling them it is a mental condition and they need to see a psychiatrist (as if they are a hypochondriac or somehow imagining their physical ailments), that the test all came back normal so there must not be anything wrong, etc. The human body is complex. Not every doctor can know everything that could possibly be wrong. And they do not all know or have access to all necessary tests. The doctors tend to be arrogant and believe that if they do not find anything wrong, there must not be anything wrong. But WE know. We know our bodies. We know we do not feel well and SOMETHING is wrong. No one should have to live in pain, or feel horrible day in and day out without any help from the medical profession who is supposed to be there to fix the problem.

Just before becoming a patient at the Mayo Clinic, I was having quite a bit of issues with trouble breathing. It became so horrible, my husband would take me to the ER. They would use their oximeter (the thing they put on your finger that measures oxygen and heart rate) and it would show I had proper oxygen saturation. They would shrug it off as anxiety and send me home. Except I knew I was not anxious. Not until they diagnosed me with it, at least. After testing at Mayo, they found out that I have low CO2. Which causes breathing troubles and does not show on standard tests.

Every time I would go to the ER near my house for help, because there were times I literally thought I was dying, the nurses had a “oh its you again” attitude. They were rude, short, ignored me, and basically acted like I’m a nuisance and just there for attention. Yes, I love spending four hours of my Friday night in the ER being treated like a leper by you nurses. That is exactly the attention I want.

I was literally told by my neurologist that the superficial blood clot on my arm was not a blood clot, but a manifestation from stress from knowing I had just had a stroke. I had a stroke because I have a blood clotting disorder. Why was it so hard for him to believe I have a blood clot? That is exactly what my disorder causes. The ER did an ultrasound and confirmed it was a superficial blood clot. This doctor literally told me that the lump I, my husband, and everyone at the ER saw on my arm was all in my head.

These are just a couple of examples of times I have been shrugged off for legitimate medical issues and treated as if I was a mental case. This is unacceptable. I feel I can step in and help. Most people do not know how to research their symptoms in order to figure out possible illnesses. And frankly, many panic that it is the worst illness they come across. They also do not know how to communicate with doctors in order to ensure they get the best treatment. This is where I come in.

I now know exactly what to say to a doctor to get the results needed for proper care. I would like to start a patient advocate company. I will personally train my employees on how to research symptoms and narrow them down to a few possible ailments. We would then attend doctors appointments with our clients and speak to the doctor in a way that would get them to test for the few illnesses we came up with. If that doctor doesn’t help, we find another who will. I have had to do so many times. I want to fight for people who cannot do so themselves. It is hard enough feeling horrible all the time, let alone having to fight with doctors to be treated properly and fairly.

I believe this would be a great cause for someone to support me. I am not doing this to get rich. I am doing it so less people have to go suffering for 45 years with illnesses because doctors just do not listen. This will be a not-for-profit company and I will not charge my clients. I will seek out grants and donations. I would not wish on my worst enemy the suffering I incurred and treatment I have received. I believe we, humans, are in this life together and need to fight for each other. We need to stick together and be a community. We are not meant to go through life alone. I want to help anyone I can, feel that they are not alone.