Erin Grimelli

You know...I have had severe asthma all of my life (I’m 56 now), it was controlled with daily maintenance drugs, and when COVID came along my biggest fear was it killing me because of my vulnerability due to severe asthma. Wow...was I wrong. I survived three rounds of Covid, and the third round got me good. Now, three years later, severe asthma is honestly the least of my worries. My illness began about six weeks after having Covid in February of 2023. I had an appointment at the doctor, she took my blood pressure and her words were “wow, I feel like I should send you to the hospital right now”. My heart was racing and I just felt “unwell”. So I started paying attention to my BP’s daily and one day my reading was 188/123. My husband took me to the ER, in the end, she laughed and told me it was probably just the Chinese food I had eaten two weeks prior!?! Stroke level BP?!? I used to be a nurse, for 12 years, I knew better (almost a curse in this case). Went to my PCP the next day and he put me on hypertension medication. This is pretty much where everything begins. Let me jump back to BLC (Before Long Covid). How Long-COVID has changed my life. 3-1/2 years ago, I was a vibrant 130 lb woman eager for the next adventure, who had just fallen in love with the man who is my husband now. We were bicycling/hiking nature trails daily, going to amusement parks, going to concerts, putting on our own concerts almost every weekend...we were living life and having a blast! Now I am 205 lbs, praying no adventures come along that I have to decline, cuz just walking across the living room can be a whole adventure in itself. I don’t really even trust myself driving anymore. Back to 2023. In the summer of 23, I ended up with what felt like a “summer cold” which blew up into what acted and felt like pneumonia. Doctors visits back and forth between my pulmonologist and PCP. Lots of prednisone becomes a part of my life I didn’t know would be with me for years, I’m still on prednisone. This illness wouldn’t leave. Five different antibiotics and nothing would work. Continuous high doses of prednisone throughout, keeping me alive. Test-after-test...could not figure out what was wrong with me. In September of 23 I started fracturing ribs. I would wake up with a broken rib...I dropped a pen once and went to pick it up and broke a rib. I was still working full time at USPS through this. Finally my pulmonologist sent me to Mayo, to pulmonology. I didn’t realize at that point, that Mayo would become my second home for the next 1-1/2 years. First things first...we desperately needed to get me off of the prednisone. It was out of control. So an appointment with endocrinology was set up. Also an appointment with speech therapy...where I was diagnosed with Vocal Cord Dysfunction. All I could think was “where did THIS come from?!?”. And last but not least, see if I qualify for the Long-COVID program up there. I had to take a very long test, I passed with flying colors, which unfortunately meant I likely had Long-Covid. So I was one of the first to be accepted into the Long-COVID program up at Mayo. I was officially diagnosed with Long-Covid and proceeded with the six month Mayo Clinic Long-Covid program. This involved sending me to many specialists, and having many tests done. By the end of the program (May-June of 2024), I was diagnosed with fibromyalgia secondary to Long-Covid, due to many new symptoms including my muscles burning from head to toe, literally, with every movement, severe post-exertional malaise, palpitations upon standing, I was “stuck in fight or flight mode”. I went thru months of pain reprocessing therapy, physical therapy...all of which didn’t seem to work very well. I continued to work full time for USPS...but every day was a HUGE challenge. So at this point, mid-late 2024, I had now been diagnosed with Long-Covid, VCD, Fibromyalgia, CFS, pathological fractures (8 ribs now), severe osteoporosis (4th or end-stage), and now we can add Burning Mouth Syndrome and adrenal insufficiency. Inflammatory markers consistently elevated, along with WBC’s and platelets, neutrophils, and more thru the end of 2024. Also still trying to get me off of the prednisone with many close calls with adrenal crisis. By now I had gained 50 lbs. 2025...I know there is still more wrong. I’m not getting better, I’m getting worse. Now my fingers and toes are going numb. They sent me to the Mayo Fibromyalgia and CFS Clinic. Prior to this I had to go thru many tests to rule out any other problems. The program was mostly about teaching us how to live with fibromyalgia, CFS, and Long-Covid. By April of 2025, I could no longer do my six hour day at work...so the docs ordered that I work only half days. In May of 2025, I started developing swelling in my ankles and feet...as well as some rashes. June of 2025, I had to stop work entirely as I was now experiencing joint pain along with the burning muscles...and I had to apply for Federal Disability Retirement. So...joint pain, swelling, rashes...I knew there was more to this. In August, things progressed to the point of making more doctors appointments. PCP sent me to a local rheumatologist. At this point I had three different types of rashes, extreme swelling in my ankles and feet, terrible joint pain, sporadic fevers for no reason...something else was wrong. She ended up pointing fingers at the fibromyalgia. I went to dermatologists as well, and was diagnosed with prurigo nodularis. My PCP disagreed with the rheumatologist and ultimately ended up sending me back up to Mayo to see rheumatology. My first appointment at Mayo rheumatology did not go well. She was in a hurry...I was the last patient of the day. I don’t even think she knew my name when she walked in. At this point I am more than 100% exhausted of doctors, dismissals, etc. I have soooo many documents, reports, tests, etc to prove that something is going on. I don’t think she looked at those. All she saw was a patient who looked overweight when she walked in the room (by now I had significant Cushing’s syndrome type characteristics...I didn’t even look like myself). She proceeded to blame everything on “Fat”. The pitting edema in my legs she said “that’s not pitting edema, that’s FAT!”. Luckily this whole visit was recorded. She had no idea she was working with a patient who has a history of being very triggered by this kind of talk. I was flooded with tears and honestly couldn’t believe what she was saying to me. Then she wanted to point to fibromyalgia...again. I responded with “you mean to tell me, I drove all the way up here for you to tell me I’m fat and you want to teach me about fibromyalgia which I have lived with for over a year now?!?” Fibromyalgia does NOT cause all the wonky lab results and crazy symptoms I was having. Anyway, she said “why don’t you just take a minute to compose yourself, and I will go talk to Dr Davis and see if I’m missing anything.” I sat there for five minutes, bawling. Then I stood up, and I walked out the door before she returned. I have NEVER done this before and will probably never do this again! I honestly couldn’t believe what I was doing! I left. I went out to my car and sat there in the parking ramp for an entire hour bawling...hard. I couldn’t even call my husband who was getting concerned about where I was and why I wasn’t answering his calls. When I finally called him, he wouldn’t even let me drive the two hour drive home while being this upset. He got me a hotel room. That night I thought to myself...you know, no one should leave a doctors appointment and cry their eyes out for an hour afterward. The word “fat” was a trigger for me, but thank goodness I was strong enough to push thru it...there are some people out there, who at this point in the game, would have considered some very scary things at this point. I went to some very dark places that night in my hotel room. It’s not right. So I filed a complaint with Patient Experience Department of Mayo. They got on it immediately. They told me that my statement would be immediately sent to the Chair of Rheumatology, and someone would get back to me. Little did I know, Dr John Davis was the Chair of Rheumatology, and he would become the doctor who saved me! He looked at my records, and next thing I knew an appointment showed up in my portal with Dr Davis. After my first appointment with him, my progress notes reflected at the top “patient referred to Dr John Davis, by Dr John Davis. January of 2026. So Dr Davis set me up with a weeks worth of testing up at Mayo. Then we did some genetic testing, all while my symptoms are only getting worse, and fast. End of a very long story with rheumatology, I ended up having one blood test and an MRI that came back positive, and that was anti-Sa Sb IgG for Rheumatoid Arthritis. A very aggressive form of RA. The MRI showing erosion already taking place in my wrist joints. So, we finally had the answer...an autoimmune disease to add to the list. Now on to treatment with methotrexate and Humira. So throughout all of this, one thing remained, and that was my work with endocrinology to get me off of the prednisone. With the CT scans and MRI’s we had some incidental findings. A pituitary tumor, and an adrenal tumor. We finally got me off of the prednisone, and that same week discovered that I have MACS. Mild Autonomous Cortisol Secreting adrenal mass. At this point I now have gained 90 lbs, and I’m very uncomfortable, and I look freakish. Turns out, throughout all of this, I have had a tumor that has been secreting cortisol all on its own. So my adrenal glands had both shut down, and my pituitary is no longer functioning. They described this like “pretend your hooked up to an IV bag full of steroids dripping copious amounts of steroids into your body 24/7”. No wonder there was not a diet on earth that would work for me. This was causing me all kinds of problems...so we had to surgically remove my left adrenal gland and tumor. I just had this surgery up at Mayo two weeks ago. The hormone change is hell, but this will lead to better things down the road. By the time we did the surgery...my liver was severely enlarged, hyperlipidemia, hypertension, outrageous swelling, Cushing’s syndrome and more. So throughout all of this, I now have 16 prescribed meds I take every day, I continue to deal with pain and sickness until we get my autoimmune disease in some kind of remission, I’m still on prednisone, I could go on forever I think. I was denied SSDI, I am reapplying. I was first denied Federal Disability Retirement, I appealed, and later was approved. It took one year. Anything else you would like to know, please ask. Also I am ok with my name being out there. I want to shout it out to the world that this needs awareness. Thank you, Erin Grimelli