Day +114, Thursday

This morning I just woke up uncomfortable. Puffy eyes and with a headache, I just felt cranky, which was too bad because there was a lovely thunderstorm at one point during the night (no freezing rain or ice or snow, though). I kept Andy company downstairs while he got ready for his day and I sipped tea. He empathized and was supportive. When he went to kiss me good-bye, while sweet, after the third kiss – I was over it. I know he was trying to make me feel better, in a tender and loving way, but it just wasn’t what I wanted. So I pulled away.

Immediately, I felt bad and apologized, my intention was not to be mean or rude. It’s tough, though, when I was just uncomfortable and what I really needed was just more sleep and to feel better, and I did my best to explain. Andy was kind, letting me know he understood and that being in pain sucks. He’s right – so I went back to bed.

Later when I awoke, BananaBear was under the covers with me. I love her so.

I just need to keep reminding myself that it’s OK to be tired. It’s OK to not feel like myself and that being uncomfortable is just a normal part of life. Everyone gets headaches. And yeah, fluid retention is a real thing. So when these things happen when I wake up, it is OK to go back to bed – I’m not trying to prove anything here. Instead, I just need to listen to and be respectful of my body.

Later in the day, it was a visit to Mission Hospital for my monthly Pentamidine treatment, administered in the Pulmonary Function Lab. I was instructed to enter through Door 2 or Door 4; thankfully, having visited the hospital on a previous occasion after friends of ours had their sweet baby girl, I knew vaguely where this was. Siri had me go one way – I trusted my gut and went the other. I was right.

The best part about the lab was the lovely Pulmonology Tech Laila, who gave me hard candy during my breathing treatment!! Yes, she was wonderful to chat with. However – at the NIH, I only got the good candy after completing my Pentamidine. Having a peppermint in my mouth while inhaling the foul tasting medicine was really a game changer.

After leaving the hospital, I spent a few minutes in my car setting up Pentamidine appointments through July, and then drove home in time to unload the dishwasher, make tea, and attend my bi-monthly virtual wellness support group. This was the first meeting at home I’ve been able to have with these lovely, resilient, thoughtful, kind and compassionate individuals since last September. I was just happy about that! And I really appreciate their feedback and encouragement – I always learn something new, have a positive takeaway from each meeting. I also feel understood by everyone, never judged – chances are someone else has experienced what I’m going through and is quick to offer their support. I’m grateful and inspired by our facilitator.

Later, Andy and I went for a drive. When presented with water or a Pan Smash Bang cookie, I choose the cookie. We had carry out from my favorite Thai place, me sticking with a Lemongrass soup, Andy opting for something delicious that involved pineapple and chicken. We both had another cookie.

I’m feeling better now, thankfully. My headache is gone, and I’m hoping that I pee less overnight (5X last night). I understand the why…I just don’t like it. I remind myself over and over – this is not forever, this is temporary. My skin is still dry, and I’ve applied my face lotion several times throughout the day and that seems to help. I also added a bit of hydrocortisone cream to my chest – shoulders were OK, but just my chest seemed slightly rash-y. Thankfully still no itching. I’m also dealing with cracked corners on the edges of my lips – for tomorrow’s blood test, Dr. W is looking for a Vitamin or Mineral deficiency, in addition to my standard labs.

And finally, I’m gearing up for my Butterfly Needle conversation. Every time in the previous 3 visits, this phlebotomist found an excuse to use a standard needle, instead of the smaller one that I’ve requested. I’ve asked kindly, I’ve been patient, and I didn’t call her on the bullshit about a Butterfly Needle altering blood results. (I Just. Can’t. Even.) Its a matter of personal comfort for me, especially as someone who gets 2x/weekly blood draws. I’ve left the lab room frustrated, both with her handy excuses and with myself – for not being more ready to stand up for myself. Tomorrow is another opportunity, a new day.

Stay safe everyone, and happy Thursday night/Friday!