The Mast Cell Block Tango

  " 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.