My name is Hallie Glasbrenner. I am 51 years old. I am an RN with a Bachelor of Science degree in Nursing from the University of Wisconsin in Madison. I have previously held the position of Critical Care Nurse in several community hospitals in the south-central Wisconsin area up until symptoms became worse to the point where I had to leave my job. I have been diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome), MG (Myasthenia Gravis) and EDS (Ehlers-Danlos Syndrome). These serious ailments, a combination of neuro-muscular, cardio-pulmonary, and vision ailments, have kept me from working in my desired and loved profession of nursing. I have not been able to work for the last seven years because I am not able to physically meet the demands of such a nursing career. I have severe muscle fatigue and cardio-pulmonary issues. I often can’t breathe. My heart rate is constantly tachycardic, and I also have suffered from vision impairment. In addition, last year I had Covid and was hospitalized for five weeks and on a ventilator. When I got out of the hospital, I needed to have supplemental oxygen delivered to my home in order to survive. I have lost over $500,000 in personal income by not being able to work in my profession. I have been trained to save lives and have done so for over 20 years, on essentially a daily basis. Over the majority of the past decade, I have been fighting to save my own life. Unfortunately, effective treatment of my disease and disability is beyond the level of local resources available. I have been seen by doctors throughout Wisconsin, the U of W healthcare system, the Gunderson Clinic system, as well as physicians and hospitals closer to my home, but effective diagnosis and chance of treatment have been literally impossible to obtain due to Wisconsin Medicaid restrictions. I have also been to the University of Chicago hospitals as well as Northwestern Memorial Hospital to their neurological specialists on my own accord and expense. Although some have been better equipped to provide an accurate and complete diagnosis, they have not found a way to treat my symptomatology.
I have currently been referred to a doctor in St. Petersburg, Florida by U of W Hospitals, Department of Neurology medical staff. There are only a handful of physicians and facilities in the US that have the experience and knowledge necessary to treat my disease and its symptoms. The published physician I am seeing is a renowned expert in this very complex set of medical problems. In the meantime, I continue to suffer. During the past 2 weeks, I have been admitted to 3 hospital emergency departments as a result of flare-ups.
I also want to share that I am a single mom of three teenage children. My oldest son is 17 and my second son is 14. Both are autistic and have epilepsy. My daughter is 15 and has ADHD. My amazing kiddos are involved in 4H, sports, and class activities, and they help mom whenever they are able. Due to my own serious health issues, it is very hard for me to be the complete mom I want to be, but I give it all I have to give every day. We live on a very tight budget. The basic subsistence I have right now financially is that the boys are on social security disability because of their condition. Additionally, as an agreement of the dissolution of my marriage, instead of alimony, my ex-husband makes a payment to cover the mortgage on the house we live in. That is all the income I have coming in, but I am very fiscally responsible and frugal. I have not been able to qualify for any form of disability because my disease is so rare, there are no references to it in disability law. This trip to St. Petersburg, Florida, although very much anticipated and I’m extremely thankful that the time has come, I am very short of funds and will need some outside monetary assistance. That is why I am writing here.
At the moment we are traveling down to St. Petersburg (my cousin is typing for me). I don’t travel well in my condition. I have a little Honda Odyssey van that I think will make it (though we blew a tire already in Georgia). I have a friend who is driving for me while I rest on a mattress in the van. I can only stay awake for 2-3 hours and then am hit with exhaustion. It will take 3 days to get to Florida. We anticipate the full trip costing around 2,000 for gas, food, and lodging. This does not include medical expenses. We need your help!
Please, if you can find it in your heart, please help me try to find a solution to my medical problems. I want to be able to return to my nursing career, perhaps in nursing education. I want to continue to be a contributing member of society and be the mom I used to be before all of these problems that have taken the life right out of me.
Thank you so very much for taking the time to read this! I ask you to please forward my cry for help to family, friends, or people you think can help. Thank you and God bless you!
Sincerely,
Hallie Glasbrenner