Side turn ahead….

1742/13th August 2021

Storms in this part of the world tend to be very photogenic…

….and rather dramatic.

Mrs Mourning Dove sat it out bravely in the naked branches of the tree we have dubbed the “waiting room” because that’s where birds often sit and wait for the feeders to be filled. Or maybe they go there just to chat and exchange gossip. Mrs D. ignored the loud thunderclaps that were directly overhead.

A Cooper’s hawk in a remote tree turned his head, but otherwise didn’t move.

Mr Cooper is very handsome. He came to sit in my “other” Christmas tree a couple of days ago.

.

The storm passed quickly and I returned to my supper but then abandoned it again when the sun came out, bathing us in golden light crowned with a double rainbow.

(The outer rainbow is faint, but is just visible, right.)

.

This morning’s view was somewhat different, but not unlovely.

This was at 5:45, a little early, so I went back to bed. I hadn’t slept very well because, well, here’s a confession:

Just lately I’ve been feeling a little beat-up, physically and I am fairly sure it started from the day I was offered a diagnosis of Sjogren’s syndrome and prescribed with Hydrochloroquine, a malaria drug.

Like so many medications, I read that hydrochloroquine may take 3 months to become effective in treating Sjogren’s and like so many other drugs, it has side effects. Sigh.

No-one can ever say I didn’t cooperate. God knows I show willing…

(Let me at least decorate this boring story. )

.

…side effects include all the things I am seeking relief from: headaches/inflammation/muscle ache. etc etc etc, but in the long run, it will help…..so I am told

(If I don’t die first)

After two weeks, I was to add another drug: pilocarpine which would relieve my dried up mucus membranes…

It’s a sign of how not cool hydrochloroquine is, that I had to see my eye doctor immediately to ensure my vision would not be at risk. I mentioned to her that I was adding pilocarpine and she raised an eyebrow.

A week after starting pilocarpine, I felt lousy and emailed my rheumatologist through the patient portal.

She told me to abandon pilocarpine so I reverted to dry, burning mouth, itchy eyes. The hydro…continued.

Grant wanted me to quit but I felt I should persevere.

Because the rheumatologist is the first medical person who ever listened to my laundry list of symptoms and seemed to show interest. Who am I to challenge her knowledge?

But then after the amazing mowing men were here, I went out to scrape grass from the flower bed and patio and I realized that I had not an ounce of energy left, no strength in my muscles.

Pain is one thing. Having no strength is something else.

So last night I decided to forgo the nightly hydro...

One thing it does do is help me sleep, so of course without it, I didn’t, but I needed to evaluate how different I might feel next day.

It’s not what one should do, I know, but missing a single pill was hardly going to matter. I can’t say that it made a difference.

When I thought about it, I was sure I had been on the hydro...for 2 months… I could stick it out, but when I checked it had been only 4 weeks. It feels like forever.

If I was convinced of the diagnosis, I could do it, but I’m not convinced. I have many of the symptoms of Sjogren’s, but not all and the blood tests don’t seem conclusive enough.

There are some hundred immune-system diseases and I appear to have a blend, complicated by asymmetrical bone structure, arthritis and now age.

At the age of 73, I feel it is undignified to be chasing around after medical doctors who for the most part cannot help.

All I need is to manage pain. For years my doctor and I did this perfectly efficiently with, dare I say it?

Oxycodone!

No, I don’t want to go back on it. It’s against the law, after all! Getting a prescription had become so difficult, it was causing me serious stress which I do not need.

Then yesterday I was reading about someone else’s battle with pain management problems and it was quite revealing:

It seems we have become victims of algorithms.

It is far too complicated for my feeble brain, but I know enough to be outraged. Naive fool that I am, I thought one’s medical data was private? Hah!

NarxCare” describe themselves this way:

NarxCare is a robust analytics tool and care management platform that helps prescribers and dispensers analyze controlled substance data from Prescription Drug Monitoring Programs (PDMPs) and manage substance use disorder.

What they do, for example, is track your applications for prescriptions. One time in Washington, I went to no less than 6 pharmacies before I found one that could fill my prescription, which I needed urgently because you could only fill it when you were down to your last dose and I risked going into withdrawal.

One needed to avoid this.

But all those applications get entered as data that suggest you must be an abuser.

The woman whose story I read got a high score from NarxCare, indicating that she was an abuser because she happened to be caring for two elderly dogs that had been prescribed controlled substances. The owner’s name is what goes into the “data”.

This makes me want to spit.

For me, now, it doesn’t matter. One way and another, I can cope. I have help and while I am uncomfortable and not very strong, I am not screaming in agony.

However, some people are. And this is the modern ridiculous nonsense they have to fight against.

People who are ill or in agony and often who have no support.

.

It’s immoral. Our healthcare system is so broken, so sad.

Boy, did this post take a side-turn.

6 thoughts on “Side turn ahead….

  1. Oh Carolyn, I do feel for you. I sometimes think that doctors join a club to follow fads and if they can match a few symptoms to the given list then they will jump on the bandwagon of the latest syndrome or disease. In America, of course, the Pharma companies have huge budgets to try to persuade professionals to prescribe their products so they too add to the syndrome roulette wheel. In the UK doctors are increasingly having to try to reduce their practice budgets and are thus sometimes reluctant to prescribe an expensive drug that may be the best solution.

    The combination of age and illness is not an easy path!

    Hugs to you, and I hope that “they” manage to sort you out soon.

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.