I came across this meme recently on Facebook and immediately saved it for myself. Although I am not Norwegian, I completely agree with their sometimes low standard for daily check-ins:

Things have transpired, some good, some bad, some that just are, since I last posted. The visiting physical therapist with whom I had a conversation about teaching my art class told me not to mention to any of the other agency personnel that I was driving, because that wasn’t allowed in order for me to receive home health care; then, after specifically telling me “I didn’t hear that” about me driving, she ratted me out to her supervisor. That supervisor told hers, who called up the nursing department’s management to tell them, with the result that I was summarily dropped from the physical therapy and nursing rotary at Medicare’s contract company nearly a month early.

It’s not a huge loss—I had already received the benefits of the physical therapists, and only one of the three nurses who came to visit me was able to wrap my leg properly so that the bandage would stay on for more than a few hours. Also, I found it wearing to have a visitor scheduled at random times every other day. Contrarily, it was kind of a nice feeling to know that someone was going to check in on me and hang around long enough to see if everything was going okay and to maybe have a conversation.

I did manage, in the rediscovered long stretches of solitude, to paint one watercolor portrait this week, modeled after a Victorian mug shot of a rather disconcerted-looking lady. Painting helps with my mental health, so this was a good development, since I need to distract my mind from all the what-ifs…

I was fretting that my dismissal from home health care would have a negative impact on my receiving the lymphatic press from Medicare, but was assured by my wound care doctor and nurses that it was a separate issue that wouldn’t come up. And I guess that’s true, because I got a call a couple of days ago from a perky Millennial who was apparently never trained in how to perform a business call; I answered the phone and she said “Hey! This is Kaylin! I need to make an appointment to come to your house next week, how’s Monday?”

I very nearly hung up on her, thinking it was another in a long string of spam calls from someone who wanted to sell me insurance or buy my house, but then she said “I need to measure you before and after,” and I said “Um, before and after what?” whereupon she revealed that it was a test date for the lymphatic press—that she would take my measurements, have me wear the press for half an hour, then take more measurements and report back to Medicare.

This news left me both elated and filled with trepidation, since this is the movement on this issue for which I have been waiting, and yet I have my doubts about showing any results from one half-hour treatment and wonder whether and how this will impact my receiving the equipment. My lymphedema is stubborn (going on a year and a half now of constant swelling) and slow to respond; the lipedema has spread around my knees to the point where my belief is that the ability of my body to pump the lymph fluid from my legs is all but choked off; and what happens if I show absolutely no change? Will they deny my request? I have to wait until Monday morning to find out.

Also, of course, there is the underlying worry that I have put a lot of faith in a piece of therapeutic machinery that won’t, in the end, be justified.

Meanwhile, last night I asked Kirsten in all seriousness if she thought anyone ever sent death threats to local weatherman Dallas Raines, who is always so damn enthusiastic about reporting the worst weather. Our current bout of three-digit heat has persisted for more than a week now, and looks likely to continue at least through Monday, when it will take a dip to a more moderate 92 degrees. Whoopee. I had to go out to the doctor yesterday (yes, Medicare, I drove the car 11 miles!), and I thought my black flip flop would stick to the asphalt when I exited the car at 10 a.m., let alone at 11:30 when I had to walk across the same stretch to get back into the car.

Heat is the toughest thing to withstand when you have both lipedema and lymphedema. The areas of the body that have built up the fibrotic tissue close under the skin seem no longer to sweat, so it all moves to the remaining soft tissue areas and builds up in the creases. The heat increases dehydration, so I have to pay more attention to regular fluid intake, lest the lymphedema swell my legs even more and the lymphorrhea break out in new areas. The extra swelling makes it harder and more painful to get around. And beyond all that, it’s just fucking uncomfortable to live in the San Fernando Valley in July with only an evaporative cooler between you and the daily hammering of the sun.

So…I’m up and not crying, and that’s about all I can honestly claim at the moment.