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Updated: 2017-11-17T01:09:33Z

 



lots better

2017-11-17T01:09:33Z

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. […]

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…




horrible allergic reaction

2017-11-05T15:55:25Z

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 […]

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.




Allergic Contact Dermatitis

2017-10-13T03:07:55Z

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 […]

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.




ouch

2017-10-13T03:07:17Z

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” [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.




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??