Trailer video of interview with Lisa Alioto where she shares her journey of medical missteps before getting a proper diagnosis, and then more medical errors from contraindicated treatment.
Lisa was born in Milwaukee - one older brother - moved around a lot in mid-West - parents married 50+ years - college in Minnesota then twin cities (Minneapolis–Saint Paul) for law degree - undergrad in psychology, criminology minor - thought she would be a police officer
Gradual onset of illness - started 2014 at age 43 - noticed getting more tired and exhuasted, harder to get to work - by 2015 was impacting work, took much more effort because so exhausted - sleep quality poor and declining - sought medical help
A lot of different kind of doctor visits - really frustrating - also expensive - now knows she has compromised immune system so getting sick a lot from doctor waiting rooms - but no body knew what to do - throwing out guesses as to what causing her illness, but some of the guesses were quite harmful - different meds - one medication was so strong - was given 8X dose of large man, subsequent doctors have tested Lisa for organ damage - also told to spend 12 hours a day outside and will be fine
An impossibility living in Minneapolis, not enough sunshine - also sent for cognitive behavior therapy - a top hospital told Lisa to exercise more, but she was very active before getting sick, an excercise buff - initially thought it was great idea, but it turned out it was the worst advice she received
Lisa was a mountain climber - 2005 / 06 decided to get into shape - started intense workouts - wanted to push further and wanted to climb Mt Kilimanjaro and summit it - one of her biggest accomplishments in many ways
Climbing was a real challenge - altitude and effort hard on the body - a migraine the day before the summit - an experience of a lifetime - now draws on that accomplishment to help deal with chronic illness and other life challenges
When initially ill, Lisa thought she had a sleeping disorder because it was so poor and she was exhausted - went to a sleep clinic - but in 2016 more symptoms - memory loss, vision loss, swollen lymph nodes - health went down hill
No doctors in Minnesota for ME patients - so not getting any care - waiting for her appointment at the Stanford clinic - but Lisa's GP said that Lisa's symptoms were beyond her skills - so went to a lot of different specialists: rheumatology, infectious diseases, internal medicine, neurologist - but not finding any thing to explain symptoms - finally went to clinic that diagnosed her with Myalgic Encephalomyelitis (ME) - aka 'chronic fatigue syndrome'
Felt relief getting a diagnosis - but relief short lived until she did her own research on ME - learned about it and went to 3 day course to manage disease - but more research exposed that exercise and cognitive behavior therapy (CBT) were doing more harm than good
CBT reinforced that she should be progressing with exercise - but in the end, the only thing they helped with was with memory loss - working out caused relapses, so a short lived experience with that program
Difference between CBT Lisa experienced, and CBT people living with chronic illness receive - Lisa loved working out, but it would cause a relapse and bed bound for days - got to the point where Lisa would consider how much chewing was involved with certain foods because her energy was so limited - choosing oatmeal over sandwich
Hard for people who have never been seriously ill to understand having to choose food based on how much energy to chew the food - too much energy from chewing - lost a lot of weight because too tired to make food, chew food
Lisa did more research about ME - about misinformation, myths - but did get helpful information about not pushing herself physically - also experienced black outs, unresponsive for hours - like coming out of deep dark hole and hit by truck, feeling terrible - but has decreased somewhat since she stopped pushing herself
Very scary having black outs - would hide her symptoms in public - but scared that someting bad could happen when she was blacked out
One turnaround in health was stopping exercise - but still had post exertional malaise (PEM) symptoms from doing too much when feeling 'good' - but next day would be crashed - learnig to pace her energy has been hard because she's a very motivated person - graduated top honors in law school, always tries to do her best at what she tries
Now when someone asks her to do something, Lisa has to look at how much energy she'll expend the day before the event, the day of the event, and if she has time to recover the day after the event - will it cause more harm than good?
"paying the price' of too much exertion means laying on the couch the next day - if lucky, she can open her eyes to watch tv - sleeping for 10 hours and laying on the couch all day to recover - eating is optional / minimal due to energy required - had to accept that self care is productive
Works from home every other day because of energy of taking shower and getting ready uses all her energy - putting on healthy face when sick takes a lot of energy too
'chronic fatigue syndrome' is a misnomer, so employers had to learn about - had to educate her employer - also involved in ME advocacy - some work with the Centre of Disease Control (CDC), health care providers - also volunteer for state ME org, doing social media - also formed Minnesota ME Alliance to support people in Minnesota - so many people are completely house or bed bound - want to find and help them and educate medical providers so people can get diagnosis and not waste time and money - also write a lot of articles about living with ME
Writing therapeutic - realized grieving for loss of acitve lifestyle, etc - used to do a lot for her parents, but now role reversal and parents are her care takers - example of grocery shopping because it takes energy to lift things, walk around store pushing cart, and unpacking at home
Grief and loss of losing life she had known - loss a lot of friends, shocking - but 2/3 gone once she couldn't be active, she lost friends - now feel have replaced a lot of those things - doing chair yoga with seniors, meditation - some positive things - may sound weird, but getting a chronic illness has made her a better person - because before was very motivated to mover herself forward, but now goals impact a lot of other people beyond herself
Engages a lot with chronic illness communities - so much campassion in these communities - brought out the best in her - more understanding
Biggest goal is pacing her energy to get better health - but hard time giving up advocacy and still trying to find balance with personal health - but had recent house fire threw a wrench into pacing - to help others, she needs to be healthy
Currently trying to get appointment at Stanford (Complex Care Clinic) so she can see a ME doctor - recently tried low dose naltrexone (LDN) and given her a small boost in energy - curcumin supplement may be helping but dealing with house fire aftermath so hard to tell - continue learning about potential new symptom treatment
Uses a sleep monitor and it shows she's not getting deep sleep - told she has 'spontaneous arousal' during sleep where she wakes briefly - but don't know cause - took meds to help with sleep, but caused more problems
Lisa will need to 'rest hard' after our interview - END
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