Update about blog

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Showing posts with label drugs. Show all posts
Showing posts with label drugs. Show all posts

Monday, March 2, 2026

So angry

 


A heavy box was delivered.



Inside was another box which opened to show a nicely packed journal, vial of pills, various instructions and warnings.





It even included a lame little plastic pill counter to hang around the bottle…it fell apart when I tried to remove it from its packing housing.



So the new drug I'm about to try comes like this.

Why does it make me angry? Haven’t even started taking it yet.


I'm pissed at this expensive marketing presentation! The cost is exorbitant!  And thus the pharmaceutical industry has spent all this money to encourage me while taking the drug.

Remember the “methinks he doth protest too much” phrase?

Why?

There are phone calls every other day from representatives and pharmacists to give support and answer questions. I let them go to voice mail.

I haven’t started the drug because I’m currently on antibiotics. 

Will I?

Probably, since I'm paying for it.

And on top of all the junk they pushed into my home (it won’t fit in the recycle bins) I'm almost crying to have been sent a journal.

I can no longer write comfortably thanks to my essential tremors.

They didn’t know it, but when my Dr called to make sure I got the antibiotics I let him know that this disability looms large in my life these days.

Yet another invisible condition!

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People rarely win wars; governments rarely lose them. -
Arundhati Roy, author (b. 24 Nov 1961)

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More to be angry about!

"The UN Charter prohibits the threat or use of force against the territorial integrity or political independence of any state in Article 2(4), which reads, “All Members shall refrain in their international relations from the threat or use of force against the territorial integrity or political independence of any state, or in any other manner inconsistent with the Purposes of the United Nations.” Launching attacks, like the U.S. strike on Iran, is generally illegal. There are exceptions for self-defense against an armed attack (Article 51) or an attack authorized by the Security Council, but neither of those is in play here.
Treaties ratified by the U.S. Senate, like the UN Charter, have the status of federal laws under Article VI, Section 3 of the Constitution, which reads, “This Constitution, and the Laws of the United States which shall be made in Pursuance thereof; and all Treaties made, or which shall be made, under the Authority of the United States, shall be the supreme Law of the Land.” (emphasis added). Upholding them is part of a president’s duties and the oath of office he takes under the “take care” clause of the Constitution.
Of course, we all know that under the Constitution, Congress, not the president, has the power to declare war. We also know that for the past few decades, the executive branch has been assuming more of that power, adopting a “beg for forgiveness,” rather than an “ask for permission” stance. But no one has been as brazen about it as Donald Trump, who has bombed 7 different countries in just over a year in office and is at in a second time in Iran, after claiming, in June 2025, that he had “obliterated” their nuclear program. It’s not a good thing when the man with the nuclear codes is punch-drunk on the amount of power at his disposal, and it behooves us all to keep a close watch."
SOURCE: Civil Discourse by Joyce Vance


“The use of force by the United States and Israel against Iran, and the subsequent retaliation by Iran across the region, undermine international peace and security.”
UN Secretary-General António Guterres condemns military escalation in the Middle East.

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The ego is simply a way for us to understand and attend to ourselves, at the same time as we understand and attend to the world around us.




 

Thursday, March 27, 2025

Questions and recovery

 


Medical realities:
Dr. at hospital was checking my condition (no touch, just an interview by my bedside) and I started having the problem which has become worse with this visit. My word finding ability when speaking was horrible...not just what's the word I want for say, a kind of cookie that's black on the outside with sweet on the insides...an Oreo...but saying  words that were kind of similar sounding but of no meaningful connection. This newer thing was saying 'dollhouse' instead of 'doorknob'!

And my respiratory doctor said, you've been taking this drug for how long for your essential tremors? 

A couple of years, I answered. A low dose of an anti-epileptic which also made my hands somewhat more steady...though lately it hasn't been working all that well.

He said that could be causing my mental frustrations. And how did he know? His father had had the same symptoms, and gone through neurological testing to determine if he had Alzheimers (where word jumble happens.) Then he stopped this one drug and things cleared up for him. 

I said that he was lucky to have a son who was a doctor.

He said his father was a doctor also.

Wow, so I thought, maybe normal aging of just forgetting names that I want to remember (movies and singers at the top) can be mine again. No more dollhouses?

I'm now on day 5 without Primidone. Shaky fingers no worse, but can still type. Mental? Who knows, since I'm home pretty isolated. But I have had a few phone conversations, without any big 'dollhouses' evident.

The eyes:
And yesterday talked with my Care Manager by phone, mentioned this conversation...and he could find nothing in his literature (google?) indicating this side effect to Premarin! I called him about my eyes giving me trouble, and my remembering some drug(s) with side effects that effect one's vision. But of course I don't know which one I might be taking that might do that.

So the problem is that the eyes are slow to react to light...and my right eye doesn't dilate at the same rate as my left one. Looking in the hand mirror in a dark room, I would then look towards the window, and my right eye stayed darker quite a noticeable bit longer to change.

Healing:
So I have a doc appointment  this (written on Tues) morning, to check on vision difficulties, and update post-hospital. It's with a new PA so she won't have knowledge of the Premarin thing probably. But I need on record that this is happening, and maybe get suggestions.

And now, something more upbeat!









Wednesday night note:
The PA who examined my eyes agreed I had slow response to light. She referred me to an Eye Doc...not an optometrist, but an ophthalmologist? Whichever, they haven't called yet to set up an appointment.
I'm through taking all the meds from hospitalization, no more antibiotic on an empty stomach and steroids on a full stomach. And now I'm a bloated mess. I hope this weight gain and overly hydrated goes away...about 6 pounds increase in the last week! Silly me, when I'm sick why would I gain weight?

If it's not one thing...

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And today marks 6 months since a lot of rain and wind (remains of Hurricane Helene) ruined the lives and livelihoods and homes of many people here in  Western North Carolina. It will be featured at 7 am on Good Morning America. Since I've been waking up at 5 am lately, this should be a breeze for me to see. (Hospital stays do change one's schedule!)

Tuesday, August 8, 2023

Ongoing cough = bronchiectasis

 Say bronk ee ek ta sis.  My constant cough is due to that condition. 

But this fever stuff has also been going on for the entire time I've lived in this apartment. Here's my post from 2016.

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 Monday, January 18, 2016

Where I have been...

It would be fun to say Japan.  Or perhaps Australia.  Or even to some favorite shops here in Black Mountain or Asheville, NC.  Sigh.  I've been to the doctor's office again.

Last Thursday I patiently awaited the medical records of our hospital to be sent from my visit THREE WEEKS prior to my doctor's appointment.  They never arrived.

So my doctor again took blood and got a pee-test.  I'd also had blood drawn by his office the day I went to the emergency room.  He apparently didn't like his own results.  Of course there were more things done to my blood at the hospital.

But for 2 months I've been experiencing extreme tiredness and fevers and chills, and some lung-related chest pains. (I did spend 3 days hospitalized with Pneumonia in early November.)

I'd even been asked by the ER doctor to keep a journal of the fevers and other symptoms.  So I read off the 3 weeks of results to my own doctor last Thursday, and he entered them into his chart.  But he didn't know what I had.  Since twice in that 3 weeks I'd actually felt good, almost normal, he said I'm getting better.

I contradicted him.  I'd just concluded that I was getting worse before I'd get better.

Since I've spent most of my time horizontal, I have no stamina for standing, walking or even sitting.  I haven't done any housework.  There's a pile of bedding on the floor waiting till I have energy to haul it to the laundry across the parking lot from my building. 

I was so grateful last week to have a friend from church volunteer when I asked for a ride to the doctor's office over 20 miles away.  I didn't think I would have the stamina to drive there and back.

I've run out of silverware and dishes because standing over the sink is so overwhelming to me.  As a potter, I've got more kinds of dishes on shelves, so I'll probably never run out of them.  And for some reason (am I a hoarder?) I have a small collection of plastic-ware forks and spoons.  (I've just about used them all up however!)

Today's early morning doctor's visit finally had the ER blood work results.  The doctor said I had negative results from his test for Mono. There was only a small possibility of a Urinary Tract Infection, which I've had no symptoms for, so we're not treating that.

He didn't have the results back yet for the test of Lyme Disease...but will call me if that is positive.  When I asked about the treatment for it, he said it's the same antibiotic which I just took for 10 days...which his Nurse Practitioner prescribed on the day she sent me first for a chest X-ray and then to ER.

I also have had some nausea, and lack of appetite.  Cooking has not been something I felt like doing, so I've been eating pretty light, except when I go pick up a meal and spread it over several meals.

The doctor said I have a "Mysterious Virus." 
I just about jumped on him.  "What do you mean, 'Mysterious Virus?'"

He said, "There are a lot of viruses in a cluster similar to Mono, and it looks like this is one of those.  There are so many they haven't got names, or have been studied yet. Of course we'll see if the Lyme test is positive.  In the meantime, you're doing the right things to get better.  Rest, do as much as you feel like. Let me know if anything suddenly changes. I'll call you with the results of the Lyme test."

So I posted on Facebook that I've got my very own Mysterious Virus.  I even named it after myself. 
"Mysterious Barbara's Virus, MBV." Why not?

Results were negative for Lyme Disease.
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Published again 8/15/21 at 8:43 pm

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I could have written the same today, Aug. 7, 2023. Again this fever comes. Lethargy, shortness of breath when just taking a bag of bread out of the refrigerator, some muscle aches, some shooting headaches, but they disappear quickly, and cough that continues whenever I go in my bedroom. (That doesn't mean I don't cough anywhere I go)

For 4 days I have awakened with chills from a fever. I stagger into bathroom and take 2 tylenol.  Then back in bed and I take my temp. Usually just 100 point something. Yesterday 101.4. That was a surprise. I had had really vivid dreams while experiencing that and not being quite awake. It took an hour to get the temp down to normal. And it stayed down the rest of the day, while I forced myself to eat a little of this or that.

I canceled my going to a women's program that I was really looking forward to attending.

I'm coughing a lot, and have to make myself do the vibrating vest, which I lean back against hopefully for 20 minutes, but I couldn't keep comfortable that long. Then I baby my lungs with a saline nebulizer which is to help pull the mucous out. It does. Productive coughs.

And being 2023, of course I've done a COVID test. Negative. I'll do another one tomorrow. 

I have had my whole life affected for 7 years with this! So major changes are going to happen.

I wake up with chills...when does the fever start each night? Probably by the time I first see light outside and can go back to sleep. So I planned to get up at that point, swaddle myself in whatever warm things I can, and start my day. I couldn't remember why I was supposed to get up, but the chills started with daybreak. Last night I left the window open till my bathroom visit around 4. Closed it then.  No trouble sleeping. Woke with first light, wondered if I had a fever, but stayed with C-PAP on and didn't get up till 7:30...when I wrapped a towel around my shoulders to help me feel warm enough.

Yesterday My friend said, are you going to go to a doctor? Today I really want to.

I wanted to go to the doctor's office with the fever. If I took Tylenol then within an hour, it would be gone, and this continual suffering would be less obvious. I called for an appointment and left a message at 8. At 8:30 I tried calling my Care Coordinator, and left at message.  I had finally pulled out a nice warm shawl to replace the towel, and took my 2 tylenol. I called the nurse next, and she said you need an appointment, (and didn't know why I'd been sent to her) and she sent me to the scheduler. Dr. will be in next town today. Somehow (later addition) I missed that she made my appointment for that next town, and I showed up at the local office. It worked out, because I had a tele-conference visit with the doc, telling him I've had this happen for 6 years (I've since researched it and it was 8 years.)

So when do I have time to live? I said this to the pulmonologist when he asked me to use this vest 30 min. twice a day. Adding another hour of treatments, which may help...so I'll try. But I honestly only do 15 min.

During a great summer thunderstorm, later that day I went to pick up the antibiotics with steriods, which I'll start in the morning. I will follow everything suggested. My worry is that I may outlive the ability of these darn animals that I put in my gut for their effectiveness. I'm pretty confident at this point though.

This is a woman who will not be waking up more and more mornings with fevers, then the nice sweats...which used to come in the night. Should I be grateful for that?

Today's quote:
There would be no society if living together depended upon understanding each other. -Eric Hoffer, philosopher and author (25 Jul 1902-1983)