kayray.org

Guys, I’m having a really hard time.

This allergic reaction to adhesives has now spread over my entire body. I itch EVERYWHERE. My skin hurts and burns everywhere. It feels as if I’m wrapped in coarse sandpaper and have a terrible sunburn. I have scabs everywhere from scratching my skin raw. I look like I have the measles and have been attacked by raccoons.

On Friday it finally spread to my face and I woke up with my face and eyes so swollen I could hardly see. It seriously freaked me out and I got worried that it might be a bacterial infection or something. I called my lovely primary care doc, Dr. Nguyen, and thank goodness he had an opening at 9am so I raced over to his office.

I explained the whole story to him, while sobbing, and he said it’s definitely not an infection, it’s definitely an allergic reaction either to adhesives or the meds themselves. He gave me a cortisone shot for quick relief and a prescription for even stronger antihistamines (hydroxyzine) that I can take throughout the day. By the end of the day my face was much less swollen.

The hydroxyzine helps somewhat — I’m still itchy but the pain is less. I can sleep through the night without waking myself over and over, scratching, but it makes me so drowsy all I can do is lie in bed and do nothing. Thank goodness it’s the weekend and most of my family is out of town so I have quiet and no childcare to do. Henry, Jayla, and Tiny Babe are here and have been keeping me company and bringing me food and water.

I just woke up (Sunday morning) and my face and eyes are swollen again. I guess the cortisone wore off.

Tomorrow I have the big trek up to UCSF to see my pulmonologist. Usually I’d take the BART and the Muni, but I’m such a wreck that Henry offered to drive me.

I’m barely even using any adhesives anymore — just a tiny bit where the catheter sticks to my skin, and I’ve even trimmed that back to the bare minimum. I don’t understand why the allergic reaction isn’t getting any better.

AND I need to keep switching infusion sites every few days; the allergic reaction is so extreme around the little bit of adhesive right there that my skin erupts in oozing sores and I need to switch to a new site, which means I have the new-site-pain to a greater or lesser degree at ALL TIMES and it never has a chance to settle down.

This has been going on since August. It’s November now and there’s no end in sight.

I am intensely miserable. This is really difficult.

Guess what, I have a difficult new condition.

After the Urgent Care doc diagnosed me with Post-Injection Inflammatory Reaction at the infusion site on my left thigh, I figured I could start a new infusion site on my right thigh and be fine for another few months. NOPE. The itchy bumpy rash showed up in less than a week.

It was bad enough, oozy and itchy and gross, that I called Accredo, the specialty pharmacy that supplies my Remodulin, last Saturday. They have nurses on call 24 hours a day to help with medication and infusion pump issues. I described my rash to a nurse and she said it sounded like Allergic Contact Dermatitis — a reaction to all the adhesive tapes and dressing that I use to secure my infusion site and tubing and stuff. She described exactly what I’m experiencing and said she’s seen it often. She said to use the bare minimum of adhesives and to take antihistamines and wait for my body to chill out (I’m paraphrasing).

Welp, today is one week later and I’ve had to start yet another infusion site on my LEFT thigh because the one I started last week on my RIGHT thigh is too broken-out and oozy to tolerate. GAHHHHHHHH. This is quite awful because the pain of a new infusion site is most severe for the first week or two, and the goal is always to keep a site going for as long as possible. I managed 6 weeks once.

I’m sorry that all I seem to talk about here is my awful health conditions. Sometimes I feel like I am just barely making it from day to day what with all the crazy side effects and pain and all. Remodulin is still better than Uptravi or Tyvaso. Once in a while I feel good all day. I’ve been chronically exhausted lately but I’ll bet it’s partly down to the strain of this constant allergic reaction.

That itchy bumpy rash around the Remodulin infusion site on my left thigh wasn’t getting better, so on Friday morning I started a new infusion site on my other leg. The rash still wasn’t better on Saturday and I was worried that it might be an infection so I went to Urgent Care where a nice doctor set my mind at ease. He said it’s “Post-Injection inflammatory Reaction” [EDIT: this turned out to be an incorrect diagnosis. See following post.] and prescribed an antibiotic ointment to soothe the itching. He took a swab just to be sure it’s not an infection, but he didn’t seem concerned at all. So that’s good.

I expect it started up because I’ve been using the same 4″ area on my left thigh for Remodulin infusions since May. I discovered that the pain of a new infusion site is MUCH less when you start the new site about an inch away from the old site… which is why I kept to that same area all this time.

The new infusion site on my right thigh hurts like HELL. All swollen and hot and red and extremely painful. I can hardly walk. It’s awful. But I know from experience that it won’t last more than a couple weeks and will become more tolerable within a few days.

So — I’m just icing it and trying not to move more than I have to. Ouch ouch ouch ouch ouch.

Just checking in to say I’m still here :)

I’m still getting over the tail end of the Bakersfield Bacteria Cough. Jeeze. Also I’ve developed an itchy bumpy rash around my Remodulin infusion site. Other than that, though, I’m feeling pretty good!

I baked apple turnovers yesterday with apples from the tree in the front yard and they were delicious. I even felt well enough to do a little recording the other day. My elderly Zoom H2 Handy Recorder doesn’t play nicely with OS X Sierra when used as a USB mic, but I figured out that I can record onto the SD card and that still works fine, so I am continuing “Betsy and Tacy Go Downtown”. I’m so phlegmy that I need to stop and clear my throat every few minutes and even then I still sound funny, so I’m not doing anything for Librivox yet. But someday I’ll pick a new solo.

In other news: Henry and his lovely girlfriend Jayla are expecting a baby girl in a few weeks, so I’ll be a grandma soon! It’s very exciting, and I’ve been knitting and sewing lots of things for Tiny Babe, as 4-year-old Rosie has nicknamed her. They’ll be some sort of cousins but it will really be as if Rosie has a (part-time) little sister, which she has been wishing for, so she is thrilled :)

All is well with me and SB :) :) :)

Bakersfield is halfway between us, so a couple weeks ago we met there to spend the weekend together and it was lovely. Bakersfield, for those who don’t know, is a desert hellhole in the California Central Valley, but the La Quinta motel is very very nice and if all you want to do is stay in bed with your sweetheart all weekend, Bakersfield is just fine.

However. A couple days after I got home, I noticed a lot of post-nasal drip, and then I developed a truly horrible debilitating cough. SB had some symptoms, too, but he’s very sturdy and they went away quickly. I am extremely fragile and the cough got really bad, keeping me up for hours every night.

A couple days ago I had an appt with my wonderful primary care doctor, Dr. Nguyen, for other reasons – I’ve had a ton of strange symptoms lately — extreme fatigue, loss of appetite, gritty eyes, hands that fall asleep all the time… I suspected that I was hypothyroid, but my endocrinologist ran labs and said that I should cut back my Synthroid dose a little bit. This recommendation didn’t make sense to me (the test results indicated that I was a little bit hypo) so I asked him again to be sure, and then shrugged and followed directions.

My lovely lovely Dr. Nguyen ran a TON of labs to try to figure out what’s going on with me (I had eight vials of blood drawn on Monday) and SURE ENOUGH I’m even more hypothyroid than before! ARGH, so frustrating. I knew I was hypo, and my endocrinologist didn’t LISTEN to me. But Dr. Nguyen listens. He said I can go back to my old, higher dose of Synthroid and that he is happy to manage my thyroid so I don’t need to go back to the doc who doesn’t listen.

Also, I’m low on B12 and D. So the combination of B12 and D deficiency and hypothyroidism explains all of my recent strange symptoms, and it’s all easy to fix.

I asked him about this strange and horrible cough. I’d told him it started right after I want to Bakersfield and it all added up — he says there is bacteria hanging around Bakersfield (and the Central Valley) that causes just such a cough, especially in people with weak or compromised respiratory systems. (that’s me) So he prescribed an antibiotic. Unfortunately, the really good antibiotics clash with all my other meds, so he had to prescribe one that isn’t super effective but might work. I’m being very careful to follow the dosing directions to the letter, in hopes that it will increase the effectiveness. Exactly 12 hours apart, empty stomach, and no foods with a lot of calcium or iron within 3 hours of either side of Pill Time.

After two days of getting enough B12, D, and thyroid hormone, my appetite is already returning. Two days of antibiotics is probably not enough time for them to work, but my cough seems a little less drastic already.

Thank goodness for doctors who listen.

Good news, everyone! He still loves me. And I love him. And we live 500 miles apart but Southwest flights are cheap and we’ll work it out somehow.

I am so lucky that he’s willing to give me another chance. So incredibly lucky. Many times in my life I’ve felt like I was living in a nightmare that I couldn’t wake up from, and now I feel like I’m in a good dream and I don’t /want/ to wake up.

I love you, SB.

Me, June 2017, looking hot hot hot.

I’ve been sick with a cold for the last week (my typical sore throat -> stuffy head -> cough) but it’s not terrible and I’m on the mend.

The Remodulin SQ is going well. I’m up to 0.012 mL/hour (goal is 0.03mL/hour). I’m still not sure I notice much difference in my shortness of breath (SOB) but my mental stamina is much greater than even a month ago. I did a few small sewing projects, and I’ve been reading again! (This might be because I’m not on Uptravi anymore, but either way it’s good.)

I feel like I haven’t talked about anything but Remodulin here for a long time. Sorry about that. It’s just a HUGE thing for me. I’m pleased that I got accustomed to the pump very quickly. It doesn’t bother me at all. I sewed a few different carrying systems for it and finally made one that works well — a purple flannel pocket on a not-too-tight elastic band that I can wear slung kinda low around my hips.

I’ve been reading Agatha Christie on my kindle every night for bedtime, plus I went to the library last week and got three great books which I read in quick succession:

My Not So Perfect Life by Sophie Kinsella (it’s always so much fun to read a new one of her novels!)
Edgar and Lucy by Victor Lodato (amazing)
Between Them by Richard Ford (a lovely memoir)

Then I returned them on Saturday (even though I was sick) and got a new stack! Right now I’m reading American Eclipse by David Baron, which is about the solar eclipse of 1878.

I’m doing fine on Remodulin! The site pain was very bad for about a week, and after that it only hurt in the afternoon and evening, and by the 11th day it stopped hurting, mostly. (I can still feel it — but I wouldn’t say it hurts.)

Ice was the only thing that really helped, so I spent a lot of time in bed with ice on my leg.

I’m up to 0.006mL/hour now, and down to 200mcg of Uptravi. On Thursday I’ll go up to 0.008mL/hour and stop taking horrible Uptravi altogether! Hooray, hooray, hooray.

Every three days I put about 1mL of meds into a little vial in my pump, a chore that only takes ten minutes or so, counting washing hands and cleaning all the equipment with alcohol wipes, etc. They supplied me with two pumps, which I need to switch every three days to make sure I always have at least one that’s working.

Showering is a bit of a chore. I unclip my pump, since it’s fine to stop my meds for a few minutes; the delivery is so slow that it doesn’t even build up to a drop on the end of the needle while I shower. Then I cover the site with a bit of plastic with sticky edges, and then cover THAT with a sheet of this special cling-film called Glad Press ‘n’ Seal. I tuck a little bit of tissue under the first plastic barrier to absorb any stray drops of water that might get through. Then while I shower I keep the shower handle low, to minimize spray on the site. Not too hard, just a little bit annoying.

Being off the Uptravi is such a relief. I had forgotten what it was like to not be in pain all the time. No more full-body aches. No more knee pain. No more foot pain. No more random muscle pain. Fewer headaches, less nausea. My brain feels clearer.

My Remodulin dose is still very tiny, but I think it might be helping already. Maybe. I think my oxygen saturation is a little better, on average. I need a nap every afternoon, though.

Couldn’t get it out of my head so I googled. Presented here for your enjoyment. Because WOW.

https://en.wikipedia.org/wiki/Prisencolinensinainciusol

I need to take my mind off the evil, treasonous, poisonous Tr*mp administration (I wonder how long until I might be arrested for saying that?), so here’s another post about Remodulin SQ. My first infusion site is on my upper left flank, a spot I chose to be not in the way while I’m sleeping. Infusion sites last 4-6 weeks, with luck.

Day 1 (Friday): Started Remodulin SQ around 1pm. By evening, the infusion site was burning and itching a bit.

Day 2: Infusion site had swollen somewhat, and was quite painful. It was painful to put any weight on that leg, so I had to hobble around on a cane. I mostly stayed in bed and napped. I tried ice, Aspercreme, and CBD oil, and they all helped. The CBD oil in particular seemed to give a lot of relief, though that might have been a coincidence because it never helped again.

Day 3: The pain was somewhat better. Used lots of ice all day. Sat in bed and sewed a thigh-holster out of purple flannel and elastic for my pump.

Day 4: Purple bruising around infusion site (normal). Terrible terrible pain all afternoon and evening. The only thing that helped was ice, and the pain was only relieved while the ice was actually pressed against the site. So, I napped and iced my leg most of the day.

Day 5 (today, Tuesday): woke up with much less pain! Could walk without a cane for the first time since Friday! Cooked dinner! Sat outside with Rosie! By evening I was very tired and the pain was returning so I called it a day and went to bed at 6pm with a book and an ice pack. The ice kills most of the pain but only while I’m applying it.

So it’s difficult but tolerable. I’ll be increasing the dose on Thursday. I don’t know if the pain will increase as the dose does — apparently, for some people it does and for some it doesn’t. And then on top of site pain there are all the other side effects, which, on this tiny starter-dose, are nonexistent as of yet. Fingers crossed.

Starting Subcutaneous Remodulin:

(Again, I’m posting so that my friends know what’s going on, and also so that other patients might find useful information.)

On Friday, Henry and I travelled up to the UCSF medical center (Uber, BART, Muni). I always allow a good time buffer when taking public transportation, so we left at 9:30 and arrived at 11 for my 11:30 appointment. Hung out in the waiting room for a while and then the nice Accredo nurse, Soyoung, who trained me at home, showed up! I wasn’t expecting that, and it was nice to see her again. Eventually we went back into an exam room and a nurse tested my vital signs as usual, and took a quick EKG. All normal (for me).

Then Nurse Jill came in. She’s one of the team of three nurses who help Dr. Janmohamed’s Pulmonary Hypertension patients — Jill, Nimi, and Amanda. I’d never met Jill before but we had spoken on the phone many times, so it was nice to finally meet her! She’s absolutely lovely. We had a long talk about how I’m feeling — PH symptoms, Uptravi side effects, etc., and she listened to my heart and lungs. And then finally, finally, finally, I was allowed to start my meds. Soyoung asked if I needed another demo, but I said nah, I’m ready to just do it myself.

So, as Jill, Soyoung, and Henry watched, I started a new infusion site, filled a vial with meds, put the vial into my pump, and programmed my pump. It’s a complex multi-step process which I’ll get Henry to video one of these days so you can see exactly how it’s done.

And then, once the meds were actually infusing into my body, Henry, Soyoung, and I waited. And waited. And waited. A nurse showed up now and then to check my vitals, which were fine. After three hours of being observed they let us leave. At that point there was very slight pain at the infusion site but not much.

By the time I got home, it was hurting a bit more, and by bedtime it was hurting even more. Ice helped quite a bit, though I need to be careful not to let my infusion site get damp from condensation.

I didn’t sleep well, but not because of the pain, which was moderate. The problem was that one of my oxygen connectors worked itself loose in the night, so I kept dreaming that I couldn’t breathe, and waking up over and over gasping and with a ferocious headache. I finally thought to check my connectors around 5:30am but never went back to sleep, gah! So yesterday was pretty rough, between site pain and no sleep. I kept icing the site, which helped, and I tried rubbing a little Aspercreme around the area, which also helped.

Jill and Amanda both told me that one of their Remodulin SQ patients says that marijuana oil rubbed around the infusion site is the best pain relief, so M got one of his SF friends to go to the medical marijuana dispensary and get me a bottle of Absorb CBD oil (CBD gives pain relief but doesn’t get you high). I rubbed a bit on last night, and within 20 minutes the pain was much much better!

Last night I slept well, and this morning the pain is still quite tolerable. I don’t know if the CBD oil is still effective, or whether enough time has passed that my body isn’t freaking out anymore. Whatever.

I am starting at the lowest possible dose, which is (get this) 0.002mL/hour. My little pump holds enough meds for three days, so on Monday Soyoung will show up at my house again and make sure I do a good job changing the vial. Every week we’ll raise the dose by 0.002mL until I can’t tolerate the side effects, just like we did last year with Uptravi. And maybe someday I’ll actually be able to breathe better. Maybe.

A couple of days ago I got my Remodulin starter kit so I can start my meds tomorrow at my doctor’s office. I have searched all over the internet for information about Remodulin SQ (sub-Q, subcutaneous) so I know there’s no one else who has ever posted information about exactly what kind of supplies your specialty pharmacy will send you. This post will be photo-heavy!

Remodulin SQ is pumped through a tiny catheter under your skin, 24-7. It has all the usual treprostinil side effects: nausea, vomiting, diarrhea, headache, dizziness, jaw pain, flushing, skin rash, or injection site reactions. The injection site reactions can be severe, but they say the worst pain only lasts about a week after changing infusion sites, which you do every 4-6 weeks.

First I opened up a small box that contains three syringes of PLO-gel, which is a topical pain relief compound containing all kinds of interesting things including ketamine:

Then I opened the Big Box:

Here’s the packing list:

Here’s what I got:
Paperwork to sign and send back
Drug info sheets
Two CADD-MS3 pumps plus clip-cases, batteries, and manual
A binder to keep records in
Shower supplies, to keep everything dry
alcohol wipes
skin prep wipes (to make skin a little bit sticky to that the infusion set will stay in place)
Cleo infusion sets (a purple plastic gadget that shoots a little needle into your skin and leaves behind a tiny 9mm-long catheter)
Tubing to connect medication pump to infusion site
IV3000 sheets (stick-on dressing to protect keep the infusion set in place)
Durapore tape to tape down the tubing to my body so it doesn’t snag. Excellent tape.
Stuff to get the medication out of the bottle and into the pump (syringes, vial adapters, etc)
Sharps container
Rubber gloves (I guess in case there’s a situation where I can’t wash my hands before doing medication stuff. Also in case someone needs to help with my meds — it’s dangerous for others to get it on their skin.)
A travel bag (insulated, for temperature control)
A plastic tray, for a nice clean work surface
And of course a 20ml bottle of Remodulin, which was packed in silver bubble wrap with a cold-pack.

Here are a few more pics:

And here’s an album of all the photos I took:
Remodulin Starter Kit

If you have any questions at all, I’ll be glad to try to answer. I hope someone else who’s considering Subcutaneous Remodulin finds this post. This kind of specific information would have helped me a lot while weighing my options.

Wish me luck tomorrow!

Last week I had a couple of episodes of seriously racing heart (145-ish) with very low o2 (80%-ish). My pulmonologist wanted me to go to the ER, so when it happened a third time, I did. That was the afternoon of Thursday the 6th. Henry drove me to Washington Hospital in Fremont, and they admitted me right away, as they always do when you show up with heart problems!

They diagnosed me with atrial fibrillation. Yay, a brand-new condition! They got my heart stabilized fairly quickly with IV amiodarone, and took chest x-rays and an echo. I had fluid built up around my lungs because my heart was inefficient, so they put gave me a diuretic, which is NOT FUN when you’re hooked up to a bunch of machines! I started out in the ICU ward, but because I was a “walky-talky” patient (mobile and alert) they moved me to a private ICU room with a bathroom, thank goodness. They kept me in the ICU because of all my other underlying conditions. For example, I needed to stay on 6 liters of oxygen even after my heart had calmed down, because of my PAH, and my BP is permanently low. The ICU nurses were great! Najib, Shaina, Karla, Joseph, and Heather. They trusted me to detach from and reattach to the monitors and machines when I needed the bathroom.

After a day on IV amiodarone, they put me on tablets and observed me for another day. At this point (Saturday) they were ready to move me to a regular room, when suddenly I had another bout of AFib. Horrible, horrible. So, back on the IV drugs (they work faster) for 24 hours, then stronger tablets for 24 hours, then observation in a regular “telemetry” room for 24 hours, with orders to walk around and see if that would trigger more AFib. In a telemetry room, you are hooked up to a small portable monitor, which beams your stats to the nurses’ station. Nice! My telemetry room nurses were Trang, Kim, and Priscilla.

They sent me home on Tuesday night. *whew*

All the doctors were great, but especially Dr. Ahmad, the intensivist. He was kind and soft-spoken and he REALLY listened to me. He kept in touch with my pulmonogist at UCSF to make sure I was getting the right care, AND he already had some experience with PAH so my meds and symptoms weren’t a mystery to him.

The worst part of the whole thing, besides the usual hospital sleep-deprivation, was that my Uptravi reactions were so terrible while I was there. Hours and hours of painful hot-face and full-body aches and crushing fatigue almost every day. I don’t know if it was worse because of the stress of being in the hospital, an interaction with one of the other meds they gave me, or if they accidentally missed giving me one dose of Uptravi (I suspect this is the case, since the reactions continue to be terrible even though I’m at home). Awful, awful, awful.

The food was pretty great. Most days I had three quite edible meals, and along with most lunches and dinners they gave me two salads and fresh pineapple at my request! I gained 8-10 pounds while I was there so I’m up to 129 and no longer severely underweight, just a little underweight.

Now I have followups with my pulmonologist, a cardiologist, and endocinologist (my thyroid levels were a bit high, which could have contributed to the whole thing). Eventually, when I’m stable, we can go back to the Remodulin plan, which has of course been postponed. Grr. But at least the nurse came and trained me and Henry on how to start an infusion site, and how to fill, attach, and program the medication pump.

Thanks, Washington Hospital in Fremont, and thanks to your great staff! Also thanks to the ACA which allowed me to buy an insurance plan which will cover all but about $500 of this whole adventure (when I went in, I was already at $3500 of my $4000 out-of-pocket max for the year, and I have no deductible.)

For several years I’ve been donating to a charity that I feel very strongly about: The Shoe that Grows. They have created a wonderful, sturdy shoe that can grow five sizes, and they give these shoes to kids in poverty. You can read about The Shoe That Grows here: https://theshoethatgrows.org/the-shoe.html

This week, the first week of April, is “Wear A Pair” week! They let us “Wear a Pair” for a week to raise awareness and get more donations. Here are my feet (with hand-knitted socks) in an Adult size pair.

Here’s a photo of Henry’s foot on the left and mine on the right:

If you’d like to donate this week, please visit my fundraising page:
https://fundraise.theshoethatgrows.org/fundraiser/935099
$1, $5, $10 — whatever you can afford — will help a child in need to be healthier and happier!! Thank you so much :)

The new offering from the creators of Serial:

https://stownpodcast.org

If I mention it here, you know it’s good.

Uptravi isn’t working for me. I’m frustrated and sad. After all those months (Mar-Oct) of pain and suffering in 2016 to get up to the highest dose I had maybe three good months (Nov-Jan) and then I started to go swiftly downhill again. My tests in Feb came back pretty bad, and my shortness of breath (SOB) is much worse lately. During those three good Uptravi months I turned my nighttime o2 down to 2 lpm and I barely needed oxygen in the daytime at all. Now I’ve had to turn my o2 up to 4 lpm and use it a lot in the daytime as well. Meanwhile I still have constant unpleasant painful side effects.

The only remaining (last resort) therapy for PAH is infused drugs, which means wearing an infusion pump 24 hours a day forever. This freaks me out and I’ve been avoiding it for 14 years by the lucky timing of a brand-new drug being made available just when I needed stronger therapy (Tyvaso, then Uptravi). But this time there’s nothing new available or coming in the near future.

I’ll be going on Remodulin (which spellcheck changes to “remodeling” every single time). http://remodulin.com/

My doc is pushing IV infusion but I’m insisting on subcutaneous (SQ) for a variety of reasons. Smaller pump, no hospital stay to get started, less risk of infection, no risk of blood clots and stroke, less danger in general. The drawback is several days of severe pain cause by the irritation of the medication where it enters the body under the skin. This, they say, lasts up to a week after you start a new infusion site, and you need to start a new infusion site every six weeks or so, generally. (This seems to vary wildly from patient to patient, as does the severity and duration of infusion site pain.)

So this sucks.

I’m clinging to the very real possibility that Remodulin might make me feel and breathe better in spite of the pain and annoyance.

They made me go up to UCSF Medical Center to talk with a social worker for a couple of hours on Friday, and now we wait insurance to approve my new meds, and then they will try to talk me into an IV catheter again, and then I will insist on SQ infusion because I am a Difficult Patient, and then the specialty pharmacy will send a homecare nurse to train me how to deal with these new meds — pump and catheter and everything. Ugh. I wish they’d just give me an instruction manual.

I saw my pulmonologist last week and the news was bad. So. With that, plus the disturbing state of politics and the suspicion that nothing really matters anyway because the world will be ending soon, I’ve been distracting myself with a lot of high-quality entertainment which I will now share with you in case you need to escape from reality for a while, too.

1. http://mcmansionhell.com After you’ve laughed at the appallingly ugly houses until you can’t breathe, you can read Kate’s informative “McMansion 101” and learn exactly why McMansions are so terrible!
http://www.mcmansionhell.com/101

2. I think I mentioned the “You Must Remember This” podcast a few months ago, but I’ll tell you again how great it is. Karina is currently doing a series on Dead Blondes. Fascinating and so tragic. Do listen, won’t you?
http://www.youmustrememberthispodcast.com/search-archive If you’re a new listener, start with Peg Entwistle (January 2017) and go through the Dead Blondes series with me.

3. Stand-up comedy on Netflix. So much good stuff. A couple weeks ago, when I reached the end of 30 Rock for the umpteenth time, Netflix suggested that I watch Jim Gaffigan’s new stand-up special. So I did. And then I watched a bunch of his older specials. Then I watched a Louis C.K. special that I hadn’t seen, Trevor Noah’s “Afraid of the Dark”, and the new Aziz Ansari special. (His segment on Creepy Guys was so excellent.) Then “Neal Brennan: 3 Mics” (I heard him on Fresh Air. I love comedians who talk about their depression. Stephen Fry, Carrie Fisher… Side note: I’m trying to remember another depressed comedian who was on Fresh air recently… within the last 6 months, probably. It’s driving me nuts. After I post this I’ll go was through the Fresh Air archives and try to find him. Edit: Found him! Chris Gethard: http://www.npr.org/programs/fresh-air/2016/10/24/499157885/fresh-air-for-october-24-2016?showDate=2016-10-24)

I like all of these comedians and they made me laugh a lot but the funniest stand-up special of all (so far) was “Mike Birbiglia: Thank God for Jokes”. I’ve been a Mike Birbiglia fan ever since I heard his bits on This American Life. “Thank God For Jokes” made me laugh and laugh and LAUGH.

Hang in there, everyone. Enjoy the fresh air, clean water, and healthcare while you still can.

By the way: Since all is not yet entirely lost, I subscribe to
http://www.dailyactsofresistance.org and I call the politicians who need to be called.

A librivox Weekly Poem: 17 readings of “The New Colossus” by Emma Lazarus, the poem on the Statue of Liberty

https://librivox.org/the-new-colossus-version-2-by-emma-lazarus/

Not like the brazen giant of Greek fame,
With conquering limbs astride from land to land;
Here at our sea-washed, sunset gates shall stand
A mighty woman with a torch, whose flame
Is the imprisoned lightning, and her name
Mother of Exiles. From her beacon-hand
Glows world-wide welcome; her mild eyes command
The air-bridged harbour that twin cities frame.

“Keep, ancient lands, your storied pomp!” cries she
With silent lips. “Give me your tired, your poor,
Your huddled masses yearning to breathe free,
The wretched refuse of your teeming shore.
Send these, the homeless, tempest-tost to me,
I lift my lamp beside the golden door!”

I am simultaneously ashamed of (less than) half my country for electing this dangerous fool, and incredibly proud of (more than) half my country for vocally resisting the evil machinations of Trump and his henchmen and puppetmasters.

The day of the Women’s March, two Saturdays ago, I watched in awe as people all over the world demonstrated with peace and strength and unity, and I felt hopeful for the first time since the election. I’m not able to join such protests because of my disabilities, but my cousin, brother, sister, and aunt all marched and protested, and added my name to their signs so that I could be with them.

And then a week later the malevolent Executive Order to ban Muslims from entering our country made me feel helpless, disgusted, and furious all over again. This cruelty and bigotry is revolting. Who among us is not descended from immigrants? What right have we to deny Muslim families the hope for a better future that our ancestors enjoyed? There is no “…unless they’re Muslim” on the Statue of Liberty:

Not like the brazen giant of Greek fame,
With conquering limbs astride from land to land;
Here at our sea-washed, sunset gates shall stand
A mighty woman with a torch, whose flame
Is the imprisoned lightning, and her name
MOTHER OF EXILES. From her beacon-hand
Glows world-wide welcome; her mild eyes command
The air-bridged harbor that twin cities frame.

“Keep, ancient lands, your storied pomp!” cries she
With silent lips. “Give me your tired, your poor,
Your huddled masses yearning to breathe free,
The wretched refuse of your teeming shore.
Send these, the homeless, tempest-tost to me,
I lift my lamp beside the golden door!

Almost immediately our wonderful strong brave citizens of all faiths showed up at airports in thousands to peacefully protest. My brother in NYC joined the protest there (have I mentioned how proud I am of my family?) and since I could not march, I donated to the ACLU.

I have been phoning and mailing our representatives and I understand that they’re receiving an unprecedented amount of anti-Trump, anti-Bannon, anti-fascism communication so I’ll continue.

According to The Washington Post, the State Department has temporarily reversed the Muslim ban: https://www.washingtonpost.com/politics/state-dept-reverses-visa-revocations-allows-banned-travelers-to-enter-us/2017/02/04/0ab5880a-eaee-11e6-bf6f-301b6b443624_story.html?utm_term=.964fa419d6bf But of course that’s only temporary.

If you, my dear listeners, have been protesting and resisting, please keep it up! We must stay strong, we must be vigilant. We /must not/ let hate, bigotry, racism, selfishness, ignorance, greed, and misogyny prevail. This country is better than that.