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Kaisa Lee 🤗

@chronic_lee

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Chronically chILL ✨
hEDS, Chiari, HAE, MASH, ME/CFS, hyper POTS, MCAS, Endo, MALS/NCS/MTS, Dercum’s, Mold/CIRS
❤️‍🩹 Relying on faith 🙏🏻

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Five years ago...⁣
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I remember having a conversation with my husband where we both felt something was coming. Some test or trial...some storm brewing on the horizon. Life had been too good, too calm, too long. We were about to be added to the tumbler and tossed about until our rough edges were polished smooth. I had no idea what it would be but I felt this urgency to take our family and go adventuring, collecting memories as much as possible. ⁣
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You see, I’m an adventurer at heart. I remember climbing my first glacier in New Zealand at age 8 and feeling truly ALIVE for the first time. I was a rock climber for almost 20 years. I love to climb ice, glaciers and big peaks. My love of travel, cultures and adventure among wild places hasn’t ceased since. ⁣
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So, we made it happen. We took the kids and visited 9 different countries since 2015. I went paragliding in the Swiss Alps, bungy jumping in NZ, swam with sharks in Tahiti, zip lining in Costa Rica.... We played hard and made many beautiful memories together. ⁣
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It was the end of that first year in 2015 when I started to feel the first symptoms. Every time I ate or drank even small amounts I would feel intensely ill....immediate fullness and pressure in my stomach, intense nausea, severe weakness, dizziness, lightheaded, headache up the back of my head, extreme fatigue....it felt like a complete system shutdown and forced me onto the floor or couch after meals often. I started with a dramatic elimination diet assuming it was food related, then homeopathic medicine, then onto many, many other medical tests. I learned to manage/deal with it and we kept planning our adventures. ⁣
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Then, in March of 2019 the thunderstorm rolled in, lightning struck and my daily functionality took a big hit with many more symptoms and much more difficulty (more on that later).⁣
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The past nine months have been a different kind of adventure....a bigger mountain than I’ve yet tackled amid a ruthless storm. Thankfully, I’m a fan of big adventures and climbing mountains and, above all, I have the Lord on my “rope team”. With Christ, ALL things are possible. With Him, I have hope and peace and fortitude. Together, we’ve got this. 🙏❤️ by @chronic_lee

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7 years ago

By February 2019 I was able to get my eating/drinking “system shut down” episodes under control enough to take my family to Costa Rica for a month. The trip was a dream and little did I know, a huge blessing before a bigger “storm” would hit. ⁣
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While we were in Costa Rica, I started noticing my vision going blurry and feeling dizzy/vertigo when trying to track objects with my eyes. Then, I would wake up with intense muscle aches different from any I’d ever experienced. It felt like I was hit by a freight train. I also started to struggle towards the end with physical exertion/energy/balance and my limbs going numb often. ⁣
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In March, I went sledding with my kids on a hill aptly named “Suicide Hill” near my house. I was on a tube with my youngest on my lap when we got going too fast and flipped, launching us head over feet and bending my neck forward as I hit the ground. My brother was taking pictures and has the moment recorded. I felt fine after....just a slight headache....but what followed within a week wasn’t fine.⁣
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Suddenly, every system I had been battling at a manageable level was no longer manageable. My “system shut down” episodes were more extreme and no longer tied to just eating/drinking and included a “seizure-like” reaction with muscle jerks and the inability to speak, open my eyes or control my body for 5-10 minutes (and hours to recover from). Aside from the “seizure” episodes, I felt incredibly weak/fatigued daily and severely lightheaded all the time (my least favorite symptoms).⁣
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New random symptoms emerged as time went on...losing feeling in my face/legs/arms/hands/feet at times, horrible pressure in my head and occipital headaches, severe pain/weakness in my neck and lower spine, almost constant severe nausea, severe bone/joint pain, irregular sweating and temperature intolerance, crazy gastrointestinal dysmotility, inability to stay upright, sudden insomnia, allodynia, severe vertigo, tinnitus, barometric pressure sensitivity, etc, etc. I stopped driving in April which made things extra difficult as a mom to three busy boys and my symptoms kept me from being able to walk well... ⁣
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...continued in next post by @chronic_lee

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7 years ago

Continued from last post...⁣
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I kept visiting various specialists to figure it out until I nearly passed out in the PA’s office one day and he finally sent me in for a brain MRI. The results came in before I had even driven home. I had a Type 1 Arnold-Chiari Malformation.⁣
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A Chiari Malformation is defined as a cerebellar tonsillar ectopia or herniation past your foramen magnum (into your spinal canal). It’s a congenital condition but often doesn’t present symptoms until adulthood or a physical event causes greater compression, blocking the flow of cerebral spinal fluid (CSF) and initiating symptoms. Because of this, there is much controversy among medical professionals regarding the diagnosis and treatment (decompression surgery to widen the foramen magnum and open up space surrounding the cerebellum). Because my symptoms are so wide and varied, we knew there were most likely other comorbid conditions involved. ⁣
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I began to research on my own and after a trip to the ER one night where the doctor thought I should check into Multiple Sclerosis, I found a neurologist in Salt Lake City. ⁣
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This neurologist does her job well but as I learned is the case with most neurologists and specialists in the Western US, knew little about recent research surrounding Chiari. She ruled out MS and was convinced it was all psychosomatic, I was not. I looked into Functional Neurological Disorder anyway and after reading many recent medical publications and speaking with mental health professionals, I knew this wasn’t the case. ⁣
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To make a long, crazy 8 months shorter, I realized much of this journey was going to be in my hands to guide and figure out so I began to research, research, research. I learned the medical language, I studied the reliable resources, I educated myself so I could ask the right questions and request the right tests. I made Venn diagrams and other charts on my white board trying to fit together the pieces. And from my bed, I climbed the mountain.⁣
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Continued in next post... by @chronic_lee

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7 years ago

The Little Mermaid “Part of Your World” Ehlers-Danlos edition

(Came up with this while *sitting* in the shower this morning, HR at 147, thinking about my now 15 rare diagnosis and trying to find humor before the overwhelm set in 😅…only some of you will fully understand all of it…iykyk)

Look at this stuff
Isn’t it neat?
Wouldn’t you think my rare disease collection’s complete?
Wouldn’t you think I’m the girl
The girl diagnosed with everything?
Look at this trove
Comorbids untold
How many symptoms can one body hold?
Listening to her talk you’d think
Wow, she’s got everything
I’ve got joint subluxations a-plenty
I’ve got mast cell reactions galore
You want vascular compressions?
I’ve got seven!
But who cares?
No big deal
I’ll get more…

I wanna be where the people are
I wanna see, wanna see ‘em dancin’
Walking around on those, what do you call ‘em?
Oh, feet
Living with POTS, you don’t get too far
ANS function is required for jumping, dancing
Then there’s the weakness….oh, what’s that word again?
We’ll just call it, ME…
Up where they walk, up where they run
Up where they stay all day in the sun
Hive and pain free, wish I could be
Part of that world

What would I give if I could live out of these four walls?
What would I pay to spend a day out on the land?
Bet’cha at MUSC they understand
Bet they don’t gaslight all their patients
Bright young women, sick of spinning
Ready to stand
And ready to know what the research shows
Ask ‘em my questions and get some answers
What causes hEDS and why does it, what’s the word?
Burn?
When’s it my turn?
Wouldn’t I love, love to explore that world out of bed?
Out and so free
Wish I could be
Part of that world by @chronic_lee

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2 months ago

Imagine normal fat tissue that becomes “metabolically sick and diseased”.

It is no longer smooth, structured, metabolically active/energy storing and does not respond to exercise or weight loss.

Instead, it becomes inflamed, restructured, fibrotic/thickened, growing into lumps (ranging in size from a pea to a baseball) interwoven with strangled blood vessels, nerves and lymphatic vessels (aka “murder fat”).

It’s extremely painful and causes widespread immune activation, constant inflammation, vascular strain, microclots, cell necrosis, nervous system dysregulation, etc etc....resulting in widespread downstream health effects.

When you try to exercise past a threshold, you end up inflaming the tissue further and depriving it of blood flow and oxygen, resulting in a deep, burning pain so severe you can barely place a foot on the floor.

Imagine pushing it aside while diagnosis pile up and then waiting a year to see the world’s leading specialist/endocrinologist on the under-recognized disease.

Imagine she uses specialized thermal imaging and ultra detailed ultrasound and exclaims “Wow, wow, wow - look at this!” shaking her head multiple times during your scans.

A respected doctor who sees thousands of patients around the world tells you -

“I’ve never seen anything quite like what is happening in your body. There is no doubt you have a complex, unique connective tissue disorder combined with severe immune dysregulation, diseased/fibrotic fat, and concerning vascular implications. It is not supposed to look like that.”

“There is no doubt you have Dercum’s Disease.”

One more piece to the insanely complex health puzzle that took a healthy, 107 lb, muscular, active 33 year old female and broke every system in her body.

#dercumsdisease

Continued in comments by @chronic_lee

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5 months ago

EDIT: Unfortunately, after four months this medication caused severe liver damage (borderline cirrhosis) and caused me to suffer a life-threatening rebound reaction when I attempted a second time after a two month break. 😞

It worked!!!! 🎉 I can’t tell you how HUGE this is!!

Within 15 mins a massive swell (face, stomach, bladder, legs) was reversed. Three hours later when it started up again, I took the second pill and in 15 mins it stopped again.

I can gain 10 lbs in a single day during a swell and normally lose it many days later while in absolute misery. But this time I lost the weight in the same day and symptoms calmed down right away. By the next morning it was like it never happened.

Hallelujah!!

My body does not tolerate most meds (and supplements) well and last time I tried I was in the ER with a very angry body and liver.

But this one I tolerated. With mild side effects and HUGE results!

No more trying to start my own IV.

All I have to do is take two small pills.

Yesterday I was even able to meet the laboratory scientists that make Ekterly, tell my story and thank them.

With HAE, I have a 50% chance of dying from a throat swell.

This changes my life!! 🎉 💙

And gives me much needed hope. 🙏🏻 So so grateful and excited to see how this paired with the new prophylactic injections I just started will change the game, help save my sick liver, further control my POTS and MCAS and further progress my daily functionality. So excited!

#hereditaryangioedema #ekterly #rarediseaseawareness #potssyndrome #mastcellactivationsyndrome by @chronic_lee

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a year ago

Today is my 5 year Chiari #zipperversary and September is #chiarimalformationawareness month. I’m feeling very tender since watching two of my fellow Chiari friends pass away within the past couple of months. I’m grateful for the strides made in the past five years since my brain surgery across the country. It’s been a journey filled with some highs and some really tough lows….I will forever be thankful for the Chiari “pioneers” who went before me and guided me (usually because of their unfortunate failed surgeries) towards a neurosurgeon I could trust for a successful outcome. I will always battle the effects of this congenital malformation but am grateful for the relief surgery has provided. I’m so thankful for a patient husband and kids and a loving God who has carried me through so much. 🙏🏻💜

#chiarimalformation by @chronic_lee

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a year ago

Six years ago I was confined to bed or the use of a wheelchair and so, so sick due to living in toxic mold. I ached to hike again without passing out or suffering major consequences. We’ve been out of the mold for two years and just moved into a new, safe home. I’m finally beginning to see progress! No wheelchair, no cane….and today I completed a harder hike I didn’t think would ever be possible again. Feeling so grateful and hopeful that healing is possible and someday I will be able to adventure again like I use to! 🙏🏻

#potssyndrome #mecfs #mastcelldisease #hereditaryangioedema #chiarimalformation by @chronic_lee

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a year ago

Learning how to self-administer a life-saving medication wasn’t part of the plan.

Coming to terms with having to administer the life-saving medication a couple times a month was also not part of the plan.

Learning to trust God and be happy despite it all = part of the plan. 🙏🏻

#hereditaryangioedema #acquiredangioedema #hae #ruconest #trustinthelordwithallyourheart by @chronic_lee

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a year ago

Reminder not to jinx myself by announcing how well I’m doing on social media in the future. 😂 Promptly went into a huge flare and am finally pulling out weeks later.

Passed out halfway through the church doors a couple of Sundays ago (literally half my body was in and half was out…great door jam lol) and then in front of the pharmacist last weekend. 👏🏻😅 Internal swelling has been nearly nonstop. 🤘🏻

Thank goodness for supplemental oxygen to help pull me back to the land of the living! 🙏🏻

#mecfs #c1inhibitordeficiency #acquiredangioedema #chronicillnesslife #mitochondrialdisease #healingispossible #oxygentherapy #potssyndrome by @chronic_lee

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a year ago

I’ve been doing incredibly well with my health lately!

Last week I was able to walk the entire Tulip Festival without an aid of some kind - no cane, no wheelchair, no frequent stops. Even on a rainy day. It was wonderful! 🌷

I’ve also been able to handle standing and talking to friends and family for extended periods without passing out which would have never been possible with my POTS disorder previously. 🥳

So, what helped?

I believe there are three things making the difference:

1) Healthy Environment: We left our beautiful home and most of our belongings two years ago due to toxic mold exposure over 8 years (we tried to stay for two years following remediation). Little by little, we have seen improvements in a new, safe space and the past 6 months have shown the most gains. We miss our home in the woods desperately but are grateful to be healing.

2) Nervous System Regulation: I have been working to calm my nervous system using somatic techniques. I had already been focusing on positivity, visualization and low stress techniques for years but realized that my nervous system needed some extra calming. Even just talking to it as if it was a separate being (“that’s not a threat, you are okay”) helped to bring my nervous system out of a stuck fight-or-flight and hypersensitivity.

3) Sea Level (dry, mold-free): prolonged trips to the ocean in south Texas and southern California allowed me to function at a higher level and move my body more. The first week long trip, I noticed a big improvement in my POTS once I recovered upon returning to the high elevation of Utah. The next trip, I noticed an even bigger change. It was allowing me to increase my oxygen levels, lower the swelling while also doing graded exercise, which helped regulate my dysfunctional autonomic nervous system and increase lower body muscle tone.

Unfortunately, I experienced a (rare) seizure on Sunday and a full collapse today where my body is so weak I can’t even stand and walk. I still have my limits but I’m so grateful for the GAINS! Eventually I will heal and be a more functional human. 🩷

#ehlersdanlosawareness #potssyndrome #mecfs #chiarimalformation #healingispossible by @chronic_lee

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a year ago

Mystery (finally) solved.

Over the past nearly 10 years my body has been unable to handle simple tasks without severe pain, increased internal/external pressure/swelling, and significant nervous system implications (at times passing out/collapsing/convulsing 10+ times a day).

The ability to eat, drink (at times even sips of water), take in IV fluids, be upright for extended periods (sometimes even minutes), sit for extended periods, exercise, handle even the slightest changes in barometric pressure, wear clothes that compress at all, handle sudden increases in blood pressure, etc etc has resulted in AWFUL consequences. I barely function.

Not one doctor could figure it out. Until this week.

It all boiled down to a PRESSURE intolerance caused by a broken adaptive immune system along with genetic immunodeficiency.

Even the slightest pressure in and on my body is triggering internal and external non-allergic swelling (angioedema).

This is why, after my scary response 48 hours after receiving the Covid-19 vaccine (pictured) the ER was pumping me full of Benadryl, steroids, etc and it didn’t do a thing. It wasn’t until I stopped putting anything IN and ON my body that it finally calmed down (12 days later - it was pure torture).

Acquired C1-Inhibitor Deficiency (Acquired Angioedema) is a serious, very rare and potentially life threatening disease.

But it’s a name. An answer. And answers lead to more answers…and treatment/management….and hope. 🙏🏻

#acquiredangioedema #dysautonomia #mastcelldisease #immunodeficiency by @chronic_lee

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24

2 years ago