Welcome to our CaringBridge website. We are using it to keep Britta’s loved ones updated in one place. As you may have heard, Britta has been very ill and is in the fight of her life after losing remission of Mast Cell Activation Syndrome. She is now dependent on round the clock IV medications, weekly home nursing care and daily support for tasks for tasks of living. Things continue to escalate, and the list of safe foods and smells is rapidly shrinking. In hopes she can avoid losing any more ground, she will begin chemotherapy in February.
Britta has a complex group of conditions often referred to as “The Trifecta” by researchers, specialists, and patients. First, there's Ehlers Danlos Syndrome (EDS) -- a genetic disorder of faulty or insufficient connective tissue and causes Britta significant pain and dysfunction throughout her body. Next up, there's her Postural Orthostatic Tachycardia Syndrome (POTS) -- a form of Dysautonomia or dysfunction of the autonomic nervous system. For Britta, POTS causes dysfunction in processes that for you are likely automatic like breathing, pumping blood, and digesting food. It also causes struggles in balance, sensory integration and processing stimulus like being startled or going through sudden temperature change. Unfortunately, she has now weakened to the point that POTS symptoms like getting dizzy often trigger MCAS flares. And lastly, the biggest offender: Mast Cell Activation Syndrome (MCAS) -- a syndrome causing Britta’s Mast Cells, which are found in most organs and tissues as well as the bloodstream, to be easily triggered and release over 200 cell mediators such as histamine, prostaglandins, and tryptase throughout her body, bringing massive and much misery with them. Of the many excruciating symptoms, the scariest is life-threatening Anaphylaxis. Over the last year, Britta has been rushed to the Emergency Department more than 30 times, had two significant hospital stays, and many tests and procedures. We were relieved by good results from her Bone Marrow Biopsy in August and reassured by continual validation that these existing diagnoses are the cause of her suffering. All of these conditions are rare, and specialists and treatments are limited. We are working to get her back to the specialists who helped her gain remission the first time. There is more information about this in links of the “Ways to Help” page of this site. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Hello dear friends and supporters of our sweet Britta,
You all deserve a full and complete update on the past 2 months (I've been promising a full update every post after April 12th... whoops!). And it will, actually factually, happen soon. There are a lot of things to report in both positive and negative columns and many require a more in-depth explanation. Hopefully, multiple issues with be resolved by an appointment on Monday, and the positives column will be the longest. Given the current and very dangerous protest situation in our Twin Cities, we decided it's more appropriate to do a short, short post.
Our cities are in violent turmoil over the murder of George Floyd in Minneapolis on Monday. I am at a loss for words to accurately convey the devastation or the complexity. If you are not talking to people on the ground in these areas you are missing much of the story, it is truly terrible. As we know this site is read by friends all over the world I want to lend some geographical context. We are in Woodbury, a suburb of Saint Paul. We are roughly 20 miles from where George died and about 5 miles from the home of the former officer now in custody. We are roughly 15 miles from another epicenter of riots in the Midway area of Saint Paul. There have been small scale protests outside the former officers' home and property damage in Woodbury and pretty much every business is closed, some are boarded up. Please pray for Minnesota.
1) Britta and her caregivers are safe *for now.* This situation is very much still happening and growing and we are watching it very closely. We don't know where we can drive in many areas and far too many dangerous things are happening in every direction of every downtown and high traffic area. Please pray we can navigate, as needed, in a safe & aware way.
2) More and more businesses are closing by the minute. Yes. Literally the minute. Unfortunately, included among these are the pharmacies and critical medical supply companies Britta's life depends on, also by the minute. For example, today we were unable to pick up medications from two different pharmacies due to unexpected, fast shutdowns. We were at Lloyd's Pharmacy in Midway on Sunday, it has since burned to the ground in the riots. Our primary supplier is located only a few miles from Midway. Further, at least one major hospital has closed its doors because of all this, and though we never want to take Britta to the hospital because of The Rona, not having emergency medical services is not an option. Pray for all these services to continue in spite of the situation.
3) Further prayer and support may be needed if we need to move Britta quickly and temporarily out of the cities. That isn't easy with complex meds and equipment, a dog, hospital needs, and the continued need to keep her isolated as a COVID-19 precaution. We do not have a location at this time should the need arrive suddenly. Obviously the plan is to keep her home if at all possible but, in addition to the protests, we were reminded this week by a power outage and tornado warning that all this complexity makes it tricky to be nimble in fast-changing situations, and the balance of proactive planning and calming anxiety is tough to manage.
4) Please pray for peace, safety, and wisdom in this anxiety-provoking time for all of us.