Matt Robinson is gone

May 30th, 2018 — 9:03pm

My gaming friend with cancer died a couple of weeks ago. I was worried that he’d be all alone, but his pastor (and good friend) was with him at the end.

Thank you again for helping to make his last few weeks so much more comfortable with your kind donations. He was incredibly touched and grateful to you all.

2 comments » | Blog

crime! crime! crime!

May 26th, 2018 — 11:29pm

I’ve been on a huge (mostly foreign) crime drama kick. Some of my favorite series have been:

River (UK)
The Assassination of Gianni Versace (USA)
The Bridge (original Swedish version)
Trapped (Icelandic)
Below the Surface (Danish)
Unforgotten (UK)

And that’s only off the top of my head. I’ve watched lots that are more forgettable, and started a few that were unwatchable. But there are always more. I discovered most of them via the most amazing blog:

https://thekillingtimestv.wordpress.com

I’m on their mailing list, so every day I get several notifications of new blog posts. I love it that they let me know about upcoming series and start dates and other news. It’s a real treasure trove. And their reviews also give me an idea of which series I should probably skip, hahah. If you’re a crime/mystery/suspense fan, go and poke around on that blog!

4 comments » | Blog

new old audiobook for you

May 24th, 2018 — 11:13pm

I just found a very old recording of The Voyage of the Dawn Treader! I probably recorded it in… 2003, maybe? You can hear Henry’s little voice sometimes, and I’m guessing he was about eight. Enjoy :)

(all chapters can be streamed here sequentially:
https://archive.org/details/kayrayreadstoyou6)

01 The Picture in the Bedroom
02 On Board the Dawn Treader
03 The Lone Islands
04 What Caspian Did There
05 The Storm and What Came of It
06 The Adventures of Eustace
07 How the Adventure Ended
08 Two Narrow Escapes
09 The Island of the Voices
10 The Magician’s Book
11 The Dufflepuds Made Happy
12 The Dark Island
13 The Three Sleepers
14 The Beginning of the End of the World
15 The Wonders of the Last Sea
16 The Very End of the World

1 comment » | Audiobooks, Blog

Audiobook Organization

May 6th, 2018 — 11:54am

I got frustrated by the disorganized pile of audiobooks on my “Kayray Reads to You” page so I started making sub-pages by author. I’m not finished yet, but here’s a start:

Susan Cooper:
-The Dark is Rising
-Greenwitch
-The Grey King

Helen Cresswell:
-Ordinary Jack
-Absolute Zero
-Bagthorpes Unlimited
-Bagthorpes V. the World
-Bagthorpes Haunted

Elizabeth Enright:
-The Saturdays
-The Four Story Mistake
-Then There Were Five
-Spiderweb for Two: A Melendy Maze

Marjorie Flack:
-Walter the Lazy Mouse

Maud Hart Lovelace
-Betsy-Tacy
-Betsy-Tacy and Tib
-Betsy and Tacy Go Over the Big Hill

J.R.R. Tolkien:
-The Hobbit
-The Fellowship of the Ring
-The Two Towers
-The Return of the King

E.B. White
-The Trumpet of the Swan

*****************
There are a few books that don’t have their own page yet but I’ll get them done soon. I also plan to make a podcast feed for each author so that the books are even easier to download into your smart phone.

5 comments » | Audiobooks, Blog

please help my friend

April 11th, 2018 — 4:50pm

4/12/18 UPDATE: Overnight the $400 goal was met, the campaign is closed, and Matt’s pastor used the donations to pay Matt’s power bill. You guys ROCK. Thank you all so much. Matt is so grateful to have his electricity back on. <3 <3 <3
************************

I swore to myself that my next blog post would not be me complaining about my health.

So instead, I’m asking you to make a small donation to help a friend, Matt R. He’s a Clash Royale acquaintance, a nice guy, who is dying of cancer. He stopped responding to treatment so the doctors sent him home with a month or two to live.

Right now, he’s at home, alone, in bed, in pain, with no electricity. He couldn’t afford to pay his electric bill AND pay for his cancer treatments. His church has been helping but they are stretched thin, too, so his pastor set up a little fundraiser for him. He’s only asking for $400, which will help with bills and food.

Would you please make a small donation? Even a dollar would help.

Here’s a link to Matt’s paypal fundrasier:
(Goal met, link removed)

Thank you so very much for your generosity. It breaks my heart that he had to choose between meds and electricity.

Our healthcare system is broken, broken, BROKEN. Grrrr.

Comment » | Blog

bronchitis

February 23rd, 2018 — 11:03am

I’ve got bronchitis. Feeling dreadful. Been stuck in bed for almost a week. Cough cough cough.

I still haven’t found a reasonable solution to my sub-q remodulin adhesive allergy issues. It’s really strange. I’ve tried every adhesive known to man, and even if they don’t cause a reaction when tested on my arm, I still get a rash when I use them to anchor a remodulin infusion site. My hypothesis is that something about having the remodulin pumped into my body makes the skin around that area super-sensitive to adhesives.

I have managed to avoid a full-body breakout by changing sites and swapping thighs every three days, and using an even higher-powered steroid ointment, fluocinonide, on the “old” site. Not fun.

Anyway.

I went to UCSF for my quarterly pulmonology appointment on the 13th and they said that since I can’t get sub-q delivery to work I need to switch to IV remodulin, which is really scary. I very much don’t want a Hickman catheter hanging out of my chest so my doc suggested we try a PICC line in my arm instead, just to make sure IV remodulin works for me and get me used to the whole IV situation. He says a PICC line isn’t a good long-term solution because it needs to be changed every couple months, but there’s a brand-new treatment option under review by the FDA right now — a surgically implanted remodulin pump, refilled by syringe every three months — that MIGHT be ready to go by the end of summer. So it’s possible that I could use a PICC line to stay alive until the new implantable pump is ready to go. Maybe. Fingers crossed.

Meanwhile, bronchitis sucks. I saw my doc on Tuesday to be sure it wasn’t flu or something bacterial. He gave me an albuterol inhaler to help me breathe and said I should start feeling better in a week or so. Still waiting.

UCSF wanted to implant my PICC line next week but that’s on hold until I get over the bronchitis.

Hurry up, FDA.

10 comments » | Blog

Hello 2018 I am still itchy

January 26th, 2018 — 6:39pm

Happy New Year and stuff.

I saw a really great allergist in December. We did some experiments and found that I was definitely allergic to the adhesive of my Cleo infusion sets (a little device that inserts and holds a catheter under my skin with a little plastic button that allows me to dock with my medication pump.)

It seemed that I was NOT allergic to the IV3000 dressing which is a very thin, sticky film that helps to hold the little infusion docking button in place.

So the first thing I tried was sticking the IV3000 stuff to my skin and then sticking the Cleo down on top of it. But my skin broke out right through the IV3000; I suspect that it’s porous and allowed the irritating Cleo adhesive chemicals to leach through to my skin.

So then I tried a square of plastic (cut from a Hydroseal shower guard) next to my skin with the Cleo on top of that, but my skin didn’t like to be next to non-porous plastic for days on end.

So then I thought I found a great solution: a double-layer of gauze next to my skin, then a square of clear plastic, then the Cleo infusion set (with the bad adhesive), and then the whole sandwich held in place with IV3000 dressing.

Worked for almost a month, but then a week ago I developed an allergic reaction, apparently to the IV3000 dressing. I switched sites to the other leg just to be sure — same problem.

GAHHHHHHHHHHH.

Starting this morning I’ve got a square of gauze, a square of plastic, and the Cleo infusion set, all held in place with some strips of paper tape. Which is not going to last long.

I just called the Accredo specialty pharmacy nurse, Angie B. She was super nice and sympathetic and is going to send me a variety of other kinds of adhesives and dressings and tapes on Monday. Steve suggested athletic tape, and while I was googling that I also found something called kinesiology tape — I’ll pick up those two tapes at Walgreen’s tomorrow and give them a try until my new dressings arrive on Tuesday.

Any other ideas? I need something flexible, sticky enough to stay in place for many days or weeks, non-allergenic, and THIN (so I can jab the catheter needle though it into my skin). Bonus if it’s just porous enough to magically let my skin breathe without letting the chemicals from the bad adhesive through… *eyeroll*

I was easing off of the hateful Prednisone and was almost all the way off when this new reaction started, so now I’m back on it, 5mg a day. Even that low dose makes me puffy and thirsty and irritable and hungry.

Thanks for all the sweet email and comments.

3 comments » | Blog

itchy again. GAHHHHHHH.

December 3rd, 2017 — 6:11am

On Friday, exactly two weeks after my final dose of Prednisone, and with the Prednisone side-effects nearly gone, the full-body itch returned. My entire skin hurts. I don’t know if you’ve ever noticed, but in large quantities the “itchy” sensation is actually a special kind of pain that makes you want to claw your skin off with your fingernails…

So I started back up on the hydroxyzine and have been so groggy for the last two days that I can scarcely move. Groggy and itchy and in terrible terrible pain from the Remodulin infusion site I started on Thursday.

Now it’s very early Sunday morning, still dark, and I woke up from the itchiness.

I have leftover Prednisone so just now I broke a tablet up and took about 5mg. Dr. Nguyen told me he thought the itch would return, and that I’d need to be on a steady low dose of Prednisone (10 mg) but oh how I was hoping that wouldn’t happen. But here we are.

Dreading the return of the Prednisone side effects. Dr. Nguyen said they wouldn’t be bad on a very low dose. We’ll see. I’ll try to get an appt with him Tuesday (he’s out of the office on Mondays) and get an official prescription for whatever dose of Prednisone he thinks might work. Until then I’ll take 5mg a day and hope it keeps the allergic reaction under control.

I had three good days between the diminution of the Prednisone side effects and the return of the itch. I made dinners for family, babysat children, and recorded an audiobook. (see below) Three good days at the top of the rollercoaster and now it looks like I’m heading downhill again.

I don’t know how much more of this I can take.

10 comments » | Blog

Walter the Lazy Mouse

December 1st, 2017 — 1:38pm

Here comes a non-medical post for you. Enjoy ;-)

Walter the Lazy Mouse, by Marjorie Flack, is an old family favorite. “Have you seen my father and mother and sisters and brothers go by?” I gave a hardback copy to Rosie for her fourth birthday, and she adores it. We’ve all read it aloud to her over and over again, so I decided I should record it for her, and for you, too!

I’ve just finished it up and put all ten chapters into my podcast feed. There’s a link in the right sidebar somewhere, or you can search the iTunes podcast app for “Kayray Reads to You”, or you can go directly to
https://archive.org/details/KayrayReadsToYou6.

Or click ‘em from here:

01 How Walter Mouse Lost his Home
02 How Walter Finds a New Home
03 How Walter Makes Furniture
04 How Walter Does Nothing
05 How Walter Learns to Swim
06 How Walter Teaches School
07 How Walter Needs His Coat
08 Danger in the Woods
09 How Walter Returns Home
10 Walter Goes Back to Mouse Island

walter

1 comment » | Blog

lots better

November 16th, 2017 — 5:08pm

I’m still alive! Thanks for all the sweet comments and emails, everyone :)

I saw my pulmonologist up at UCSF on Monday the 6th. Usually I take myself up to SF on the BART and the Muni, but I was so exhausted and in so much pain that Henry offered to drive me, thank goodness. They did a chest echo but I was in too much pain to do the 6-minute walk test. Yay, sort of. I hate the 6-min walk. Doc prescribed a 12-day course of Prednisone for the crazy rash. Prednisone is horrible stuff, but within 3 days my rash had calmed down a lot and continues to be better (except that I can’t stop picking at all the scabs). Not gone, but better. Tomorrow is my last day of Prednisone, so then we’ll see if it all starts back up again. Cross your fingers.

Prednisone has bizarre side-effects. My face swells up every night and I wake up looking like a full moon. For the first few days I had to pee every 15 minutes. Also, the increased appetite is NO JOKE; I’ve been eating like eating is going out of style. My vision is kinda blurry and my eyes are gritty. I feel wired, and I don’t sleep well at all. One night I woke up absolutely drenched in sweat — my sheets were actually soaking wet. Gross. But luckily that only happened once.

I’m also still on a high-powered antihistimine (hydroxyzine) which makes me feel groggy and dried-out. Lovely Dr Nguyen, my PCP whom I saw on Tuesday, told me to take them every 4 hours now instead of 3x/day to try to keep everything calm when I go off the Prednisone. He says if the rash comes back, and he thinks it will, we can manage it with a low dose of Prednisone. UGH. We’ll see how things go over the weekend…

3 comments » | Blog

horrible allergic reaction

November 5th, 2017 — 7:54am

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.

5 comments » | Blog

Allergic Contact Dermatitis

October 7th, 2017 — 9:18pm

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.

2 comments » | Blog

ouch

September 17th, 2017 — 10:00am

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.

1 comment » | Blog

checking in

September 15th, 2017 — 9:59am

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 :)

1 comment » | Blog

Bakersfield Bacteria

August 13th, 2017 — 8:44am

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.

1 comment » | Blog

Happy!

July 20th, 2017 — 2:35pm

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.

8 comments » | Blog

All is not lost!

June 30th, 2017 — 10:08pm

All is not lost! I may have another chance to show this wonderful man that I love him. I may have a chance to win his trust and his love back.

Comment » | Blog

update

June 29th, 2017 — 7:58am

He says he’s not sure how he feels. I said I will wait till he figures it out. He waited for me for three years before he gave up. I’ll wait.

All is not lost, yet.

1 comment » | Blog

broken heart

June 27th, 2017 — 8:28pm

I fell hard for a man in 2014 but I freaked out and dumped him (twice) but we stayed friends and he has been my best friend for the last three years while he told me that he still loved me but he finally gave up on me and has met someone else and I realize now that I’ve loved him all along (somehow everyone knew this but me) and it’s too late and I wasted three years not being with him, THREE YEARS, and I am dying of a broken heart.

I kept trying to date other guys but no one ever came close to touching my heart like he does and every time my phone dinged, EVERY TIME, I hoped it was a text from him. Why didn’t I figure it out? Why was I so stupid? Why didn’t I listen to my heart and my feelings instead of my stupid brain that kept telling me that we were too different and that he’d be better off with someone else??

1 comment » | Blog

Me!

June 21st, 2017 — 8:20am

kara2017

Me, June 2017, looking hot hot hot.

2 comments » | Blog

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