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Updated: 2017-09-17T17:00:14Z

 



ouch

2017-09-17T17:00:14Z

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 […]

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” 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.




checking in

2017-09-15T16:59:26Z

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 […]

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 :)




Bakersfield Bacteria

2017-08-13T15:44:25Z

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 […]

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.




Happy!

2017-07-20T21:35:11Z

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 […]

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.




All is not lost!

2017-07-01T05:08:04Z

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.

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.

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update

2017-06-29T15:01:50Z

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.

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.




broken heart

2017-06-28T04:16:47Z

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 […]

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??




Me!

2017-06-28T03:17:40Z

Me, June 2017, looking hot hot hot.

(image)

Me, June 2017, looking hot hot hot.




hello world

2017-06-12T21:20:16Z

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 […]

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.




Remodulin update

2017-05-24T00:41:14Z

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, […]

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.