Hello everyone, thank you for visiting.
It’s a very challenging task to be sitting here writing this and we continue to write and delete so that we’re able to sum up what has been going on in mom’s life the past year, but it has all happened so fast and is all still so new to us making it hard to put into words.
This past spring our mom, Susan, had been experiencing some weird health symptoms and often, fatigue. She had more good days than bad days, was working, enjoying time in California with family, visiting Steven and his family in Duluth or at their cabin, watching my boys on Mondays through the summer and attending the occasional happy hour with the ladies. Towards the end of summer, it started to get noticeably worse with sharp tingling and swelling in her hands, random bouts of muscle weakness in different areas of her body, lots of swelling and feeling more fatigue than before.
She met with an internal medicine doctor towards the end of summer to address her concerns hoping to get some answers. That visit was followed up with some other more “routine” exams and a lot of blood work but still no answers. Everything looked fine. Because of the symptoms she was experiencing, the doctor scheduled her to meet with a Rheumatologist as they are specialized to diagnosis and treat musculoskeletal disease and systemic autoimmune conditions as her symptoms pointed more in that direction. Being a new patient to him, it took almost three months to get a consult.
In early November she met with the Rheumatologist, symptoms still worsening, but was able to walk in and up to her appointment on her own with the help of a ride to the clinic. She was very happy with the doctor and finally felt that she was getting somewhere in this journey and felt heard. He was very concerned at how quickly she was declining and immediately ordered many more ASAP tests, blood work and quick follow up appointments with him. She had multiple scans and an MRI revealing that she had significant muscle inflammation and an extremely high CK (muscle enzyme) count pointing at some sort of muscle disease.
Within the month of November and many more appointments she was diagnosed with not one, but two degenerative auto immune muscle diseases, SRP positive necrotizing myopathy and anti-Mi-2-positive myositis. As a result of these aggressive diseases, she went from working, walking, and living a pretty normal day to day life to being forced to use a wheelchair, all within a matter of weeks. Unfortunately, this loss and damage to her muscles comes with significant pain, debilitating fatigue, and lingering muscle atrophy. It is currently unknown whether she will be able to regain the muscle strength she has lost, or whether the decline is permanent. There is no cure for these diseases and the SRP myopathy she is fighting is only found in 5% of patients within this category. She is unable to continue working, temporarily not driving and may be unable to do so in the future. She has started some new medications with hopes that it will stop the progression of the diseases and give her more energy to get to physical and occupational therapy appointments as well as live a more comfortable day to day life.
We are working on getting some additional pages set up as so many of you have reached out wondering how you can help, and it is so so so appreciated. The support we have received from family and friends is overwhelming and it has not gone unnoticed. When everything is up and running, we will update this page.
It has been a whirlwind of emotions these past few months and lots of unknowns, but we feel we are to the point now that we finally have some answers and remain hopeful that she will improve and get stronger. This has been very hard for her and has brought major changes to ger life, but she remains positive. She’s the strongest person we know.
THANK YOU to everyone from the bottom of our hearts for the love, support and prayers.
Katie and Steven
https://www.gofundme.com/f/expenses-from-a-sudden-medical-situation 
