Journal entry by Megan Engstrom-Bussert —
Hello loved ones,
It’s been a while since I’ve gotten an update out and seeing as four people have reached out within the last week asking for an update, I’ll take that as my cue to write this.
Last time in November or December I mentioned that Megan received a call from her neurologist at Cleveland Clinic and the diagnosis of ME was officially made, Megan has stage 3. Since November, when Megan last saw her neurologist here she was given the referral for diagnostic tests to help confirm the POTS diagnosis and ANS dysfunction. I have been strung along for three months by Loyola after trying with Elmhurst Memorial to get these tests scheduled, but after numerous attempts to cut through the red tape, Loyola finally admitted they will not accept outside referrals, as Megan saw a private practice neurologist. This has been incredibly discouraging and frustrating to say the least. After going back and forth with her neurologist here, and their sadness at the state of the medical care in the country we are looking at our options; 1. Go back to Cleveland for the tests. 2. Find a private testing facility that will accept the referral but will be much more expensive. 3. See a new doctor as both Loyola and Elmhurst Memorial suggested and start from scratch, praying that doctor will recommend the same tests and get things figured out. So this is where we are at. We have gotten nowhere since our last update.
I would like to share about her ME diagnosis and a bit more of what that entails. As there are a few of you who ask and generally love to read for yourselves, I’ve included the links for some of the research we've studied. For everyone else I've included a few highlights for clarity following the links.
https://www.cdc.gov/me-cfs/about/index.html
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7431524/
https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/chronic-fatigue-syndrome-cfs
https://www.mayoclinicproceedings.org/article/S0025-6196(21)00513-9/fulltext
“Nervous system dysfunction affecting parts of the brain, brain stem, and ANS (autonomic nervous system), could explain not only the encephalopathic or neuro-cognitive type of symptoms, but also those resulting from disruption of key central regulatory mechanisms, such as those involved in endocrine, circulatory, thermoregulation, and respiratory control. Examples of these include intolerance to extremes of temperature, chills and temperature variations, intolerance to exertion, hyperventilation or irregular breathing, orthostatic intolerance, with hypotension or postural orthostatic tachycardia, and other symptoms related to autonomic and endocrine control function.”
“Despite myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) affecting millions of people worldwide, many clinicians lack the knowledge to appropriately diagnose or manage ME/CFS. Unfortunately, clinical guidance has been scarce, obsolete, or potentially harmful. Consequently, up to 91% of patients in the United States remain undiagnosed, and those diagnosed often receive inappropriate treatment.”
“Yale School of Medicine suggests that the average lifespan of an ME/CFS patient is only 55.9 years, which is over 20 years less than the average U.S. lifespan. To this day, ME/CFS is the most underfunded illness by disease burden by the National Institutes for Health (NIH).”
“Housebound or bed bound with ME/CFS: About 25% of people with ME/CFS are housebound or bedbound. Those who are housebound may be able to undertake minimal daily tasks for themselves, such as brushing teeth, cooking or using a computer for short periods of time, but they have to pace their activity and often use aids to help them (such as a chair to sit on in the kitchen while cooking). They are unable to leave the house, often because this requires more energy than they have available. When they do leave the house, they often need mobility aids such as a wheelchair or mobility scooter, or other assistance (such as someone to drive them). Recovery from a trip out of the house can take days, or longer.”
“According to the CDC website there is no cure or approved treatment for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Any activity or exercise plan for people with ME/CFS needs to be carefully designed with input from each patient. While vigorous aerobic exercise can be beneficial for many chronic illnesses, patients with ME/CFS do not tolerate such exercise routines. Standard exercise recommendations for healthy people can be harmful for patients with ME/CFS. People with ME/CFS often have deep pain in their muscles and joints. They might also have headaches (typically pressure-like) and soreness of their skin when touched. orthostatic intolerance that are triggered when-or made worse by-standing or sitting upright. Push-and-crash” cycles are when someone with ME/CFS is having a good day and tries to push to do more than they would normally attempt (do too much, crash, rest, start to feel a little better, do too much once again). Patients should talk with their doctors about all potential therapies because many treatments that are promoted as cures for ME/CFS are unproven, often costly, and could be dangerous.”
It stresses the need for therapy, nutritional supplements, and a balanced diet, all things Megan is already doing. It's repeatedly stressed to find a doctor who will help set a regiment that is personalized as all therapies and treatments don't help and some can do real damage. This is our greatest challenge and I honestly doubt such a unicorn exists. Every Doctor and specialist she has seen doesn’t know what their own hospital websites say about ME. They don’t know the research of the institutions they work for and don’t even know the research that concludes the list a mile long of Megan's comorbidities that contribute to her suffering all factor into the diagnosis. This exacerbates our frustrations with finding an actual doctor who can, as all the websites specify, "walk alongside us in creating a treatment plan." All we've experienced are doctors who know little to nothing about ME and tell us to try elsewhere with no direction. At Cleveland Clinic Megan's neurologist didn't even know who to ask as to where a doctor could be found that works with ME patients. It makes us wonder who is writing these website pages on ME since no one appears to actually work with the patients. We are also understanding why all the websites say it typically takes ten plus years to get a diagnosis. They simply want to treat the one symptom they focus on and dismiss the rest. We know as the studies suggest, there is a chance her life will be shortened by this. Megan is not afraid. We are not stressed! She says God numbered her days before giving her life and if this is the allotment so be it, but nothing will change what He has planned.
Meanwhile Megan continues to suffer and live day in and day out with these limitations and pain. She goes through the push/crash cycle weekly and it’s incredibly hard to master. She has good days and bad days. Days where she cannot catch her breath climbing the stairs and gets dizzy trying to shower. Days where she can’t get out of bed. Days where she cleans no matter how bad she feels, clutching her chest and taking numerous breaks to give her heart a chance to stop racing. She continues her yoga and stretches, must sleep with a heating pad for the nerve tingling in her hips that otherwise make sleep impossible, and continues to seek aid for her IBS and chronic gut issues. Her skin hurts to touch and she has been getting horrific flushing when exposed to heat; infrared saunas or showers. Skin sensitivity is common with ME. When the symptoms are bad they seem to progressively be growing worse. She threw her back out a month ago just bending over which can happen, but we also are cautious to see if her muscle degeneration had a role in it. I had to stay with her as she couldn’t walk or move. Seeing as she pushes her limits to clean and complete daily tasks, if she can’t walk I know it’s bad. When I ask her for her symptoms she forgets many because they are so normalized at this stage and she doesn’t recall how she felt before all of this; lymph pain, joint pain, PEM crashes and feeling sick every week after exerting herself, or if she’s feeling a bit better and dances for a minute when music comes on before crashing and getting winded. This is her normal.
Our focus now is to get the ANS diagnostic tests run and determine which system/s are being affected and treat those. We hope to find someone who knows ME and can help Megan tailor a program to her abilities, limits, and needs. We might follow through on seeing a rheumatologist to see what their take on symptoms are and rule out additional contributing factors. Though honestly, Megan is exhausted with doctors at this stage and every visit seems to leave us both more frustrated with the health system. I’ll admit I am at my limit with having faith in the healthcare system.
As of January Megan began the most difficult work with her trauma therapist. After being groomed by a former therapist it took years to find a Christian trauma specialist who could help rebuild that broken trust. It's a work in progress but Megan continues to cling to the truth that God can mend every break. She did immensely difficult work years ago uncovering the extent of her trauma, naming it. Now she's taken on the greatest challenge of facing those traumas that she's buried and compartmentalized, feeling for the first time the extent of grief, loss, and pain. Her therapist says it's the only way to move through it, is to feel it. However long it takes. For every trauma she's suffered, he's showing her they were always followed by compound traumas- people silencing her, not believing her, alienating or gaslighting her. These all take a toll. She is working to find her voice in all of this.
She's understandably a mess, battling depression and grief yet but will testify she is surviving by God's strength. Her job according to her trauma specialist is to feel the extent of the pain and right now it's unimaginable how she lives each day in this fog, both physically and mentally. I am so proud of her courage to face unspeakable pain every day, both physical and emotional. I watch her in mental anguish and she still cries out to God, thanking Him for what He gives and what He takes. Praying for His will to be done. Praising His name and thanking Him for sustaining her this day. When I see her feeling down, I have to remember my job is not to break her out of the pain right now but to sit with her in it. This is exceptionally difficult to bite my tongue and withhold my wise ass commentary. Honestly, it’s hard to watch. Hard to bear the silence when we normally text on my lunch but she’s not responsive. Knowing she’s dealing with the worst pain imaginable. Her willingness to walk this road and not run from the truth has me in awe.
My nerdy and beautiful wife shared the following analogy with me- “I am on my way to face Sauron in Mordor, except my ring is my trauma. Once I make it to the other side I can make it to the Shire. And God will lift me up on the wings of eagles and see me through the dark nights of the soul and into the light of day. I don't need to be able to see the other side of this. I only need to know it exists. I know God is with me. That is enough.”
I always want to include some of the good in these updates. Megan loves tending to all twenty of our houseplants and has had the windows open every day that it’s above fifty degrees. She sits by the window and says she soaks in the sun and smells the fresh air, listening to the birds sing and it makes her happy. We play board games and watch movies, Adventure Time, and rewatch The Office. I hope to get her out to the zoo this spring before the cicadas hit. I told her if they fly in her mouth it’s just extra protein, but she won’t stand for that. What can you do? For Valentine’s Day my wife got me a card that shows she knows me better than anyone. It was a vintage couple from the forties or fifties and the wife says “You’ve only said I love you once to me.” To which the husband replies, “I know. And if anything changes I’ll let you know.” I got a good laugh out of that. She got me a board game and hoodie that is a rainbow of colors and says “I am Kenough.” I proudly wear this in the solitude of my home where no one will see me. I however got her books and went to build a bear. Twice. The first trip proved fruitless as there were no actual teddy bears that were plain and not characters from movies. So I ordered a bear unstuffed then went back to the store to stuff it. This time there was a teen birthday party. This time I had to stand in line forever to reach the stuffing station. Once I reached the stuffing station the attendant tried to hand me a little stuffed heart and told me to squeeze it and make a wish. I looked her in the eyes with a deadpan expression and said, “No. Get on with it.” This is how much I love my wife, in case any of you were wondering.
In all seriousness though, God continues to give us levity to deal with this. Megan has been housebound for years, had Long Covid for two years now, and I can’t explain how we carry on. She asks God every morning to bless and strengthen our marriage and He answers abundantly. Please continue to pray. As always for wisdom and discernment in all medical choices. For patience and perseverance in this season of waiting. For peace and trust in God for all financial needs. To never lose hope and especially for comfort for Megan in this painful season.
Thank you so much for continuing this walk with us (albeit feels more like a crawl). And thank you to all of Megan’s friends who reach out and text or visit- I see how much it impacts her and cheers her up.
Love,
Jesse & Megan
My flesh and my heart may fail, but God is the strength of my heart and my portion forever. Psalm 73:26
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