kayray.org

Not sure if I’ve complained about my adhesive allergy here recently. It is HORRIBLE. My doctors and I have tried EVERY ADHESIVE KNOWN TO MAN and I react to it all — hypoallergenic, made for babies, nothing works. So guess what happens when I go to the hospital? They stick things all over me and then my skin begins to burn and itch and develop bumps and get all red and my entire body gets itchy.

On Wednesday, the second day I was in the hospital, I removed the just-in-case unused IV port myself. I’ve asked them to do it in the past, and they give me this whole speech about what if there’s an emergency and we need to put drugs into you really fast, and I tell them that’s fine they can start a new IV if that happens (I have easy, excellent veins), and then after a lot of arguing they remove the IV port. So I just did it myself when my skin started to burn under the adhesive. Don’t think they even noticed.

Two days later and my skin is still killing me there. Burning, itching, swollen, hurting. My corticosteroid ointment helps for about ten minutes and then it starts up again.

And of course I had all the monitoring electrodes stuck to my skin, must have been eight or ten of them over those two days. So I have eight or ten burning, itching, swollen circles on my torso. Haven’t had enough energy to shower, and even though I tried to wipe off the stick-um with alcohol wipes the damage has been done. I am sooooo itchy.

Anyone out there have this problem?

In other news, after feeling tired but basically ok yesterday I slept badly because I kept half-waking, gasping for air, but I never woke up enough to think of a solution. I was using 5 lpm of oxygen (I usually use 4 at night). When I woke up and checked my vitals, my heart was basically ok, fairly steady and about 80-90 bpm, which is normal for me, but my blood oxygen saturation was much too low at around 88%. So I turned on my second oxygen concentrator and stuck that cannula in my nose, too, for a total of 10 lpm. Oxygen level rose up to about 92% which is still not good enough, and I felt “funny”. Not dizzy, no pain, just Not Right. Soooo I checked to see if Marcos (brother-in-law) would be available to drive me to the UCSF hospital where they understand my condition and can cope with my crazy meds without trying to kill me. He only had one meeting today, so that was a relief. Also left a voicemail message and a mychart message for my pulmonology team up there, describing what was going on.

Pretty quickly after that, my oxygen levels started climbing back up to a normal level, and now I’m back down to 5 lpm and 95%, which is good enough and nothing to worry about. Still quite fatigued from Hospital Adventure and Stress, but I no longer feel “funny”. Lay in bed and rested all day.

Nurse at UCSF just called me back. We discussed. She told me to take an extra 20mg of Lasix (diuretic) over the weekend to help flush extra fluid from my body, and check in with them next week. And go to the emergency room if things get weird.

I think I’ll be ok now.

I hope I’ll be ok now.

I would like very much to still be alive for a while longer, thank you very much!

In 2013 I wanted to die. I very much wanted to die, or at least to not be alive. But things got better. And then things got better again and again and again. And then my mental health got a LOT better (Yay for therapy, everyone go to therapy). And now I’ve met the man of my dreams, I have a brilliant spark of a granddaughter and another due to join the family any day, a big warm family that loves and supports me. My life is great except for being at death’s door all the time. Ha.

If you have depression too, hang in there. Things will get better. Just hang on.