The Mast Cell Block Tango

  Pacific caves created by the action of the wave on one of the many islands on the coast I took yesterday from the boat I was on. So it's been plenty boring here. Laundry, gardening, cooking as health allows, ho hum! A dear friend of mine's husband launched their large charter boat from Flamingo harbor and we went on the first cruise instead of a big sports fishermen and tourists on the sunset cruise. One of the sailors/servers is the teenage son of one of our church members doing his first time out on a big boat. Approaching this I was worried. Between the worried about getting in the panga for the trip out to the boat, to transferring to the boat, to being exposed to diesel fumes or chemicals and worries about reacting to the food. There was a lot of apprehension involved.  Mostly I was worrying for no reason. I stepped into the panga (small boat with an outboard motor) easily enough from the beach. The problem happened when I tried to step from the panga to the large boat....

 Haven't posted much since I got back because there wasn't much to say. Bad days, good days for breathing. Good days, bad days for balance. One last Sahara Dust wave, and one volcano belch. Me wheezing and sneezing while doing minimal housework. Some of the few things I returned with: Yes I have been busy reading, and yes, there is no place like home. Got that tray at a lovely thrift shop. Today I went to church with my dearest friend here, just to do a running inventory on the tee shirts she and Jim sell. I hate that church. The time I attended there were 8 or 9 dogs and I reacted terribly to the dander. Today was the same except it was a mere two dogs and the owners kept them out of the actual church part, seeking to stand between the kitchen and were the tee shirt sales table is. Itching and witching, sneezing and wheezing. A nice man I'd just met early in the day over the coffee pot came up and started talking to me as I was putting up the tees, and another lady wandere...

  Scrambling right now trying to schedule the million and one things for Mom's house sale. I returned from the States with a Mast Cell related rash from the nape of my neck to my buttcrack. Why? Who knows. The laundry soap at the Airbnb? A wrong scented breeze wafted by? Who knows? But it has made for some painful movement covered in various unguents and ointments. I've been feeling low grade feverish and slightly sick for weeks, popped a new rash and thought I was getting that scourge I get when I am stressed and harried - the shingles. Not that lucky. Got up this morning after a restless night to torso pain, a rare pain I knew what it was. Gall bladder stones. Now I have diverticulitis pain in the same spot as always. Afraid to go to the doctor because I'm pretty sure they'd ambo me straight down to Hospital Metropolitano Lindora and having gall bladder surgery. The husband is back with his high school buddies and not here, so obviously I do not want this to happen un...

  I know it's been a couple of months but I keep thinking about that disastrous visit to the medical clinic in the USA. I will never for the life of me understand behaving in such a horrendous manner to a patient. I remember her snapping at me that she didn't even know what Combivent was, acting like it was some sort of mysterious garbage, like putting cut red onions in your socks, or practicing voodoo.  Here's the skinny. I was too flabbergasted by her nasty words to formulate a response - so here it is, just later. Hey lady, I'm sorry you're having a bad day and you picked a profession you're not even slightly emotionally mature enough to navigate like an adult instead of a child with delusions of godhood.  Combivent is Combivent. It's sold under that brand name in both the USA and Costa Rica. I've shown you the box from the German manufacturer with dosing and composition on it. You can easily see it's nebulizer vials. My critical care pulmo put me...

  Day two of being home. Crazy anxiety even if the breathing is better and I'm not sneezing and wheezing with each breath.  But at the same time I am having crazy copious amounts of anxiety still and it makes no sense at all. Just mastocytosis I guess. Slept almost none last night. Today I'm trembling and crying for no reason, feeling the sky is falling. I cannot force myself to do many tasks. House is mostly clean, I'm on top of the laundry, and kitchen very clean. Stinky is at my side every single moment. I have him in my arms pressing against my body like he's wet underwear. Guessing he feels my anxiety.  Clearly I got home in one piece, even as I was doubting it. The airline kept emailing me referencing bad weather. Kept Googling it and saw it was likely a day or so after I was scheduled to fly. Still told airline I was flexible. The night before I was scheduled to leave they scrubbed my original flight and put me on one leaving my favored airport two hours earlier ...

  Life is making just about as much sense as a chicken in a pot being borne along the sea by the waters. In the good old USA right now and likely to be here for some weeks. On vacation but soon heading down to Louisiana to go to closing on Mom's house. Ah, and as I was typing this I got word from the real estate agent about a home cleaning and estate sale service that can help out. Now no need for me to go at all! So I've bought my plane fare back, not first class sadly enough, but business will do this time. When I fly alone I buy the ticket that is the most reasonable combined with the lowest hassle. Being disabled some places do better with disabilities and some airports are best. Some day soon I'll break it down here. I've tried many options on the East Coast. Ever since I got here I've struggled mightily with my mast cell. I cannot breathe! Between the massive smoke influx, general late July/early August pollution I'm struggling to exist right now. I'm ...

  Crazy tee shirt I have ordered. I am still working on getting the husband squared away. He's starting to get with the program more. I was wrong. It's actually been 12 years since I started popping my first high sugar readings. I don't know if mastocytosis affects blood sugar but I do not doubt it might. *scampers off to do a Googling* son of a biscuit it apparently does! Since I've been helping the husband and we've been going to and fro from the clinic and the hospital I've not done my usual diet routine. I've keep my blood sugars relatively stable by having a light breakfast, normal lunch and light snack for dinner. That's it, eating at regiments times with things I'm not allergic to that aren't filled with carbs or sugar. It works, right up until it didn't. The rub being I got pushed off my eating times by all the clinic too and froing. Low blood sugar, crawling in the bed in the afternoon and staying put. I am better now. The asthma is ...

  " You simply learn how to live among the ruins and call it home " It's not going well. More later. I am so stressed out by the endless medical crisis that is the husband. It doesn't help he is endlessly squeamish! No prostate or kidney cancer but also no insulin in the body, not great kidney function (he lost one to cancer 20 years ago!), too much calcium likely meaning the parathyroid cancer is back. Trying to help him with the reality of insulin shots, constant testing, the absence of bread in his life and a multitude of pills. I'm not taking care of myself well, my blood sugar kept dropping too low, so low I woke up throwing up last night. Not sleeping.

  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...

  Well, today was one of those days. I felt decent, got up, and swam in the pool. I know I need to work out more to build stamina and lung strenght, but I keep forgetting if I overdo it then I am down for days. You'd think I'd learn by now. Nope. Swam and walked about forty five minutes. Foot I tore a ligament in during the July 2026 debacle of the concrete stepping stone giving way to dump me two and a half feet down into the French drain, that foot, yeah that foot, singing the blues. This is no way to run a body! After making sure that the water pressure was strong before I swam I emerged to just a trickle, not enough to shower in. Why does this matter? Every time I am dunked in pool water with its icky chemicals I need to shower with soap and follow up with copious natural ingredient body lotion afterward. Failure to shower and slather results in immediate itching and hives. Failure to moisturize means more hives and bigger.  Oh well, back to the drawing board after the ach...

  Dang! How did they know? I don't smoke pot, I have medical marijuana gummies for bad asthma days. I actually do not like that stoned feeling any more than I like the jittering and jiving of the asthma drugs. I miss the days of teenage-hood when I liked those feelings. Over the course of the few weeks I've been home to Costa Rica I've been mia in parts of my life. Why? Mr. Mastocytosis. The specialist at the mast cell clinic I've started telehealth appointments with changed my drugs around. Added in H2 and another Proton Pump Inhibitor. Guess what? My effing body decided to react to the PPI by making me sleep anywhere from a dozen to eighteen hours a day. I had to stop it immediately. On the flip side the H2, something I used and dismissed in the past for being not helping at all, is helping. But only if I use it with a teeny bit of benadryl. Which is doable. You win some, you lose some. Ready to smack the Mr. around. He just asked me to go to the bar and meet his frie...

 ...on the tines of this idiotic thing that is my health.  I only wish I was as sanguine as this lady. However I am way rantier. Right now I'm just feeling crazy tired. I slept 16 hours last night. Didn't mean to but conked out at 3 pm, got up for a little while at midnight and went back to bed an hour later. I hope its like the usual when I do a crazy long sleep, a body reset from the asthma. One thing I am not looking forward to is speaking to our tenant. He does the occasional yard work, but the other night he started doing the Tico thing and burning the leaves. I try to tell all the gardeners that all leave burning needs to take place significantly downwind of the house just beyond the wall. He burned all over the yard and just like that I had asthma again. Le sigh. Trying to stabilize on my meds long enough to start to think aboH1ut a reset there. One of the doctors that treats this crap had some H1, H2, PPI suggestions. I have to get sort of stable before turning the rou...