The Mast Cell Block Tango

  Yep there is that! So now I have a unique problem while I'm still dealing with the pesky virus. The husband. He went to the doctor.... FINALLY!!!... after years of headaches, napping often and other complaints. We switched our care out from Dr. Andrea to another clinic. Andrea sold out and now runs a small clinic 30 minutes away. Too bad because she was the closest thing here to anyone who'd ever even heard of mastocytosis. She coordinated with my Stateisde critical care pulmo. Not that she needed to much because I finally learned to monitor my condition like an old style Soviet monitoring the Berlin Wall, acutely aware quickly to do away with any threat. The closest we came to super interventions and lots of contact between my doctors was twice. When I had Covid in November 2022 and when RFK Jr. took over as HHS secretary, both points of absolute freak out. So Andrea is out of the picture but this new big clinic is it. The best part is that they TAKE OUR INSURANCE!!!!!!!!! S...

  Apparently it's not messed up muscles, or unreasonable blood sugar problems. It's some pesky virus that my bestie here and others have. I have it. That's what it's all about. going to bed. Husband has it too

  Maybe I need to take up a feminine hobby like cross stitch. Love this sampler. When I last left you I had crazy sleeping going on. At the same time I overdid it at my workout. Different dumbass day, same dumbass song. I follow a coach on Facebook and YouTube that is as  rare as a unicorn - John Noel. I found him on Facebook about a year ago. What's unique about this guy is that he does exercise videos with modification for us older crippled up folks along with the regular exercise. I haven't seen huge strides until this week. I have regained some mobility, I can get on the floor to scrub now, but there isn't anything that will fix the balance. Between working out at a pace that makes sloths look rapid I've benefited greatly. Until this week that is. Usually I am very good about slowly doing more and more. I credit it to giving me the energy to stick to that house cleaning list I use. I've lost a little weight, but the workout goal is not weight loss, it's gain...

  Having a lot issues with sleep the last 18 months and trying to uncode and solve them has been quite the journey. Yes, they are mast cell related! Last night around 6 pm the husband asks me to give him an eye rub while he listened to the news. Climb in the bed, start rubbing his eyes while reading a book on maritime law and cannibalism. Next thing I know I'm waking up around 11:30 pm. No kitchen clean, no shower, no meds, no nuttin' and no good oxygen starts. Dang! and here I had a good day even with low oxygen stats I worked out and for the first time was able to do squats and balance completely! I got up, tried to do my night time routine of dishwasher, watching pots and pans, taking meds and showering to no avail! Tried to lay down, no sleep. No sleep but a whole lot of video games and reading, and if I'm truthful eating too* before the Sandman finally came for me at 5 am.  9 am I woke up. Not groggy, not tired, not in pain. I feel strangely fine! Oxygen still not wher...

  Something silly to start off with. Sunday equals art studio highjinks! One of the things I love the most about living here is my wonderful Tico neighbors. They just brought me a fat fully dressed fresh chicken. Plan on roasting it tomorrow. I sent back a big jar of homemade Boston baked beans and some fresh bread. One of the realities of being disabled involves being organized and strategic in how I cook. I cook a lot from scratch because of my food allergies. I make sure there's always enough bread, eggs and things that take little to no cooking. That roaster is going to be made into various easy to cook meals for those days I'm too sick to cook! Part of being strategic about our meals is making sure I always have things in the pantry that I can fall back on.

  Low O2 stats yesterday, rectified by a rest in a cold room involving a silly book followed by a good hard sleep. Too bad it didn't stay. Today, this morning, out in the yard filling the squirrel feeder, and the bird feeder, puttering around the potted plants, and TANK! It hit, I felt it, and that's all she wrote. I stayed mostly in bed or sitting in my chair in the living room. I freaking hate days like today. I wanted to be outside. It's the very high humidity and heat trashing the lungs.

  I love this lady. Every time I see sweet her face I hear her voice proclaiming " Lord Jesus, it's a fire! " and I hope life is treating her kindly, at least more kindly than I am treating myself. Been shaking since night before last because we had an earthquake. A rattling, rumbling, up, down and sideways shake at 9:01 pm on Tuesday night. It was above a 5. on the scale, some grade it a 5.3 and some a 5.1. Who knows? Right as I was standing nekkid as hell in the shower sleepily clutching a bar of soap. Do not recommend with my balance. Thankfully on the recommendation of my doctor and physical therapist I put a nice large teak bench in the back of the shower. I rarely use it, I can balance okay on a non slip rubber mat. Not Tuesday night, it was drop the soap, assume the position, and clutch the bench while shrieking at the husband in the next room. No damage here even if we were a mere 13vkilometers from the epicenter. Just my nerves. I've been sort of loopy since,...

  Well, not exactly like that....snipped a lot out because its just not needed. I was gaslit three years ago and fell into a depression. Cleaned just enough on my worst days to keep the worst of the dirt away. Mostly just disorganized and needed dusting more often. Massive house clean once or twice a week all day long. House mostly sort of clean. Then I stumbled across a cleaning list on one of the mast cell groups. It was a simple list, but I've taken it and tweaked it. It works! I've been cleaning from the list and after two weeks the house is immaculate. I am having minor disability issues. When the rubber of weeks of asthma hits the road we'll see, but considering how customizable it is to your day I'm predicting that it will likely work. Okay, the daily - all things I have found I can do on the worst days. I've always made my bed in the morning so this hasn't been difficult on no balance days. Back to the Daily List. Make bed Unload, load and run dishwasher...

  " Mama told me not to, I did it anyway, Misbehavin '" Nothing like a little Uncle Baby Billy from "The Righteous Gemstones"  Today was my 66th birthday and I spent the day trying to have a good time with my dear friends. It was fun, we went out for naughty breakfast of cake and refreshing adulty type coffees followed by shopping at a joint that was glorified Temu things at a crazy price. I still ended up buying knobs for my pantry. Didn't react to the food which was good because whenever I go to a new restaurant I'm very wary of food allergens and cross contamination. Nothing. The glorified Temu shop was another matter, everything in the entire place was encrusted with dust I think. All things from India with rough wood surfaces that are dust magnets.  It wasn't until we got to the plant nursery that my mastocytosis reared it's butt-ugly head. Very hot and humid and the oxygen stats plummeted. Went home, laid down in the air conditioning for aw...