Help on reentering the world…

We’ve been gone on vacation to Whitefish MT the past week; it was a success in that I had more energy overall and could participate in meals and some walking outings. I’m hopeful that this week’s DUTCH-hormone testing at ND will improve things further.

In the meantime, I’m struggling a bit with finding a balance in pushing the envelope to ease out of the habits of just squeaking by. I could use some advice! Setting modest daily goals for now.

I made the decision to hire a life coach probably 3? months ago when I was feeling fabulous and thought I’d get back to work. In hindsight I think I felt so good because of finally getting first bit of thyroid T3 meds and doing lllt laser treatments at same time which combined for superstar energy. I absolutely will get back there! In the meantime, this coach of mine has really been a mixed bag. I’ve thought about just taking a loss and cancelling last sessions but figured I’m used to low value specialist appointments. The person was trained by Oprahs coach Martha Beck, and seems to want people to find their ‘real’ calling to replace typical career. After being sick so long I’m all about helping pay bills with a steady income. Now that I’m feeling pretty good again (thanks increased T3 & lllt!), the coach wants me to ponder how I’ve benefitted from being ill so long. Erm– I am the master of looking on the bright side, but this smacks of how could I have caused Cfs and ‘hung onto it’. Puhlease. It is not my fault doctors are ‘practicing’ medicine and can’t diagnose thyroid resistance to save their lives. My life.

Onward to goal setting. Any other ideas please share, have Google-fatigue on Cfs recovery steps which amounts to preachy ridiculous stuff like graded exercise. Without the T3, exercise would have dug me further in the hole Fer Sure. On bad days I just wave my arms in the air for a couple mins. Ha!

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Superlearning

Today at lllt treatment the doc mentioned a book ‘Superlearning’ which had a profound effect on his life, going from ADHD barely passing high school to implementing certain techniques during college which helped him graduate with a 4.0. My whole happy family (and our extended families) struggle with ADD inattentive type as well as EDS related poor health. I cannot read this book fast enough (wish it was on Audible) but we have a brand new homework & reading-time ritual: “Alexa, play Super Learning music.”

Luckily there are some bedtime music options available as well, also on YouTube. Excited.

Mast Cell Activation Syndrome / Disease, aka MCAS aka MCAD aka Years of Chronic Migraine

It’s been a couple years since the first post, and the entire time I’ve been looking for solutions to 2 critical heal issues: chronic daily migraine & fibro pain (mine) and allergy & speech impediment issues (son). Thankfully, there are recently GREAT things that have happened healthwise for both of us!

Focus for now is on recapping chronic daily migraine recovery. Key points, in reverse order of finding them but in correct order of importance!:

  • Mast Cell Activation syndrome / disease. Also known as MCAS or MCAD. Googling the heck out of this and scouring everything – found a regimen recommended by Dr. Afrin in his book “Never bet against Occam”. This is keeping 24×7 migraines away: Twice daily: 1 Zyrtec, 2 Pepcid. Low histamine diet. Digestion itself triggers a histamine mast attack in your body – so if consuming more than 100 calories take Ketotifen (prescription) just prior to meal.
  • Over time became allergic/sensitive to everything. First dairy. Then gluten. Over time ANY food other than zucchini would trigger a reaction resulting in migraine. This is a sign of mast Cell disease! Being on the correct meds for mast Cell has resulted in not only no migraines but very few food allergies. Gluten and beef are the only foods that will still trigger migraine even in small amounts.
  • Low iron/ anemia detected no matter how iron-rich my diet & supplements. This combined with migraine and other inflammatory responses should have been a much earlier pointer to Mast Cell disease and will test to confirm it is now resolving.

More soon !