da tomāto

Happy new year! I've not posted in months... ano na mga nangyari? Busy yung December which is fine. I had fun. I'm going to get another round of blood tests done early March. Ready na yung doctor's order from my home-service consult with an MD I got thru the AIDE app last month... actually, yung previous blood tests ko, dun ko din na-book. Laking tulong yung AIDE app para sa mga taga-Metro Manila! As in! -- I want to write about my experiences using the AIDE app which were all positive so far, pati yung same-day Rx medicine deliveries were great - they use Grab! Mahal ang blood tests at consultation, pero sobrang sulit naman at bawas anxiety kung hindi ka talaga makalabas ng bahay. Naisip ko na I want to write about hotels - and how they treat guests in wheelchairs. Medyo madami nakong naipon na kwento from Alabang, Mandaluyong at Makati (nakwento ko na yung GoHotels sa Bacolod dati na very accessible kasi proper ramps are built around the building! As in tama ang he

Waited all afternoon for Sky to install my broadband today. Nagtext sila 7:45 pm. Naubusan daw sila time... Till next dispatch daw. I transferred sa powerchair ng 1 pm. Between 1 pm and 6 pm kasi ang sched. Kala ko matutuloy ko lang magtrabaho sa wheelchair, di pala. Nagpatulong nako lumipat sa bed ng 7pm. Sakit na kasi butt ko... :(

Been packing clothes vertically ever since I found it's better than rolling them. So efficient this way. You see everything. No rummaging, ever. Hmm. Not too bad for someone who can't raise her arms up very well. As long as I can rest my elbows on something, I can do it.

Since my left hand became weak at the same time my polymyositis flared over a decade ago, it has never improved, even a little. I kept telling my PTs (physical therapists) about it but they just said the same thing -- do the open/close exercise, squeeze a stress ball. I did and still do but nada, nil, zip. My left hand would occasionally feel numb. The numbness would go up to my elbow and sometimes my face, and I'd be terrified thinking that I was having a stroke. I even wondered if I was developing inclusion-body myositis (ibm is another kind of idiopathic inflammatory myopathy that initially weakens the fingers and, as of now, progresses because it does not respond to treatment). My left fingers often hyper-extend to compensate for the weakness. When we attended the annual myositis patient conference by TMA in September 2016, we noticed that my left hand looked the same as the ibm patient attendees -- fingers hyper-extended. Can I also have ibm? I asked Dr. Steve Ytterberg  

The powerchair after just 2 months One black plastic cap over a front wheel is lost, seat is squeaking, motor is tick-tick-ticking... Phew. It's been gate-checked at airports 4 times (airline staff here in the US are so used to it that it's great traveling now), strapped inside wheelchair-accessible cab (once) and shuttles (twice), wheeled through some small streets (even brick so it hurt my head because my chair does not have shock absorbers), disassembled to fit in an SUV full of groceries, wheeled through sand (tried to but failed - I got stuck and had to be pushed back to the cemented walkway - terrifying), through grass (never again - dirty and uneven ground), through wet ground (ick), drizzle of rain (ack - this is an electric wheelchair, you know)... What else? Point is, I can't keep it pristine, clean and all in one piece. At this point, I'm happy it's still working and I'm free to move around by myself - yipee!

Golden literider ptc 162 model in red. I have a powerchair! Yay! The first picture is the salesman adjusting the metal plate to go up a notch for me. A powerchair was on top of my to-buy list while in Florida. We headed straight to the medical supplies store our first week in. I love my red chariot! Weeee!