Sunday, March 21, 2021

Finally, I’m above water & able to catch my breath. I’ve missed you.

Here’s what’s been happening with me, I hope you’ll let me know what’s been happening with you.


Brain: The size and location of the masses in my brain remained stable between my November and January MRIs, however the January MRI showed a loss of white matter which, as directed by the surgeon caring for this part of my brain, I’m trying to rebuild and thicken through daily aerobic exercise. White matter loss could be because of years of pain from my hip, years of my brain marinating in toxic death hormones, or just because I’m old. The loss of white matter is not the cause of my cognition problems, and it’s not nearly as serious as the loss of gray matter which does indicate dementia. My next brain MRI is in May and, since early February, 6 days a week I’ve been getting in a solid 90 minutes to 2 hours of no-impact aerobic training. I’m work out on either my craigslist rebound air or my $15 thrift store gazelle edge elliptical. Hopefully, the May MRI will show that my white matter is rebuilding and, of course, I’m also hoping that it will confirm that there has been no change in the location or size of the pituitary and pineal masses. If I string together 3 or 4 consistently stable/improving brain MRI’s, I’ll only need to have one every year unless symptoms return or worsen.

Hip Rehab: I nailed my strength and ROM tests last week and as a result, I’ve been discharged from physical therapy, and I’ve been fully cleared to continue with my more aggressive strength work. I see my surgeon in July at the 1-year post-surgery anniversary for a final set of images to confirm the thicker, longer implant shaft from surgery #2 isn’t in mashed against the cortex of my femur, and to make sure my capsule has healed well enough so that compound movement restrictions can be removed. At that point, all treatment from this injury will be completed. My ongoing strength training includes daily work on an incline bench with 8, 10 and 25-pound weights, all of which support from my GFM has funded.

Vision: The eye exercises I was given in November made my vision so much worse that by the time they retested me in January, my left eye drift and resulting double vision had gotten so frequent that I was on the verge of having to patch my left eye. Between November and January, I also lost what little remained of my depth perception. They asked if I was willing to try a different set of eye exercises that work on the brain in a different way, I didn’t think I had much to lose so we gave it a try and, February tests show a rather remarkable improvement in my brain’s ability to align my left eye. It still drifts but not so much as to produce a double image and, amazingly, it’s not glassy and all dead-fish-eye looking anymore – I’m counting this as a miracle. The exercises are to train my brain’s convergence skills and once my brain gets good enough at converging both my eyes onto a single target, the hope is my depth perception will begin to train back up. I perform convergence and depth perception exercises many times every day, I keep a spreadsheet on frequency and duration, I’m tested again in April.

Vision, Part 2: My insurance only covers medically-necessary eye care, it does not cover the type of eye care that results in glasses or contacts even if the reason I need new lenses/glasses is because my vision is impacted by a medical condition. My eyes are so supremely complex that it’s really hard to find an ophthalmologist willing to do the work to understand my histoplasmosis and how it has damaged my vision; I’ve always been the practice’s only histo patient. My doctor and I agree that my convergence exercises have everything in my optic nerves all juiced up and that’s making my everyday vision so unstable that, even within a single day, I change between 3 different strengths of multifocal lenses. My eyeglass lenses are almost 3 years old; they’re way out of tune. Thank you to those who’ve donated to my GFM – your support has paid for me to get this care, and to buy these 30-day trial sets of experimental contacts.

General Health: Bladder: I’ve finally gotten in with a urologist to help with overactive bladder symptoms that started almost 4 years ago, just this week he started me on some medication that’s supposed to help, my $1400 a month medical plan didn’t cover over $200 of the prescription cost. The support from my GFM makes it so I can still get the drugs I need – thank you if you’ve donated. In April I’m seeing a physical therapist to learn some muscular start-stop triggers that will hopefully holistically help control urge/frequency. I can close the strongest resistance gyne-flex and I can also “lay an egg” so my problems aren’t from lack of pelvic floor strength or hypertonic issues.  Skin & Hair:  Last week I also saw a dermatologist to help with the rash, welts and hives I’ve had for months, she thinks it’s related to my compromised immune system and the ton of allergies I have. I’m on some prescription creams and she’s got me taking 4 antihistamines a day to try and get the itch under control.  My hair is regrowing where it fell out! I look a bit like a Dr. Seuss character.

Live/Work situation: Thanks to the GFM, it’s warmer and brighter in my amazing space, I’ve paid several months ahead on my utilities and I paid my car insurance for the year. I’m stable enough to be able to make some progress on putting together a workout “set” where, once I recover enough to be consistent in teaching, I can begin to film/live stream classes, courses and meetups. Hopefully, when Apple comes out with its new MacBook models in mid-2021, I’ll be able to replace my circa 2011 laptop with one that’s able to handle the post-production of what will become my new digital body of work. I began digitally sharing my work back in 2003; I am the Pilates industry’s original NFT.

That’s all I got for now, I’ll be back here when I have more news but until then, and always, always, always, please email or call if you want to connect, I’d love to hear from you, I am always interested in your life and what you’re doing, and I would love to hear your voice and see your beautiful face.

[email protected] 206-963-0755

PS The annual Rainier sea lion load out has been going on since February, 25/8 they just wail and bark and rumble, with their massive heads up, mouths wide open, screaming exuberance at the heavens. I’m in love with them, I’m in love with you, and thanks to the help of so  many, little by little, I feel myself falling back in love with being alive.