If I knew how long I was going to be around, I could make better decisions. There are lots of possibilities percolating around in my head. I am not sure what’s wrong with me that can be overcome with treatment and what is just tough luck.

Each day for weeks now, I have gotten more and more swollen up. It feels like it won’t be a whole lot longer until my arms are almost useless. I cannot do really basic stuff. It’s no longer possible to put meds in my hand, bring them to my mouth and swallow them. I cannot twist my hand around to a flat position and I cannot bring my hand to my mouth while holding pills in it. I cannot grasp tightly and I cannot rotate my hand so pills can go in my mouth.

Right and left chair arms…looking down on top of arms

It’s getting extremely difficult to get up out of my chair. I added yet another pillow under the seat cushion. It’s awfully uncomfortable 😦 But the worst part is that I keep cutting the palms of my hands. I have to put a considerable amount of my weight on my hands/wrists to push up and get out of this chair. The chair’s plywood guts are sharp! Since I have very little hand mobility, I cannot even patch the darn thing. It’s getting so that sitting in my formerly comfy chair is more like torture 😦 There are three places for me to be….the living room chair, bed or my power wheelchair.

I used to get in bed every night with my laptop, watch a YouTube video or two and then go to sleep. That has not been possible in a long time. Now, by the time I use my walker to go from chair to bathroom to bed, I am gasping for breath with all my might. I have to put on the oxygen and CPAP before lying down on my wedge pillow. It’s getting harder and harder to put on my CPAP mask because my hands don’t work, I cannot raise my arms up that far and by the time I wrangle all this together, breathing has become a life and death proposition. I have to suck air for all I’m worth to get in the right position and then again to cover myself with my quilt.

To eat, I used to put a pillow and my lap desk on top of the ottoman. Now I cannot lean forward enough thanks to the hernia getting huger and the swelling making me unbendable. I have to lean back and bring the plate or bowl as close to my face as possible. I cannot breathe while sitting upright….but I cannot swallow while partially reclined.

Then there’s turning my head. My neck/chin/head/chest is so swollen that when I turn my head, the darn skin tags get caught and rip 😮 Hurt’s a lot….and happens quite often 😦 The back of my head is so swollen that I can barely tip my head backwards.

swollen-head-neck

Not much division left between head/neck/face. It’s a swollen blob.

Today is kind of creepy. I am too weak to cough. I feel kind of like I am encased in cement. I am wicked bad weak.

It’s bumming me out that I never found a hospice company willing to take my insurance. I need help. I need a nurse or aide to tell me when to get medical help and where to go. I need someone to check in on me and to help do things that are becoming impossible.

mg-droop

Myasthenia gravis is an almost constant PITA. Drooped eyes, mouth. My face is melting.

red-hot-ear-and-rash

How about the middle of the night rash and ear on fire? What the heck?

Perhaps something more pleasant? Three different days of meals, using the same chimichurri rice I wrote down my recipe for on Wednesday. I got 4 meals from the original 2 servings of rice made in the rice cooker.

rice-chicken-avocado-tomato-chile

Chimichurri rice with canned chicken, avocado, tomato and chili lime seasoning

rice-and-soup

Chimichurri rice in Trader Joe’s Organic Tomato & Roasted Red Pepper Soup

meatballs-tomato-avocado-lime-chile-rice

Chimichurri rice with quartered chicken teriyaki meatballs, tomato, avocado and Chile lime seasoning

About that seasoning. For years I have used Tajín seasoning, but kept hearing the TJ’s version was even better. Ummmmm, yup….I am now in love with Trader Joe’s Chile Lime Seasoning Blend. It’s great stuff 🙂

chile-lime-seasoning-blend

I liked being able to quick fix 4 meals from the same rice. I need to do something like that more often.

Advertisements