It’s been a few years since I last updated here. And more still since I was writing about my health and operations. The last several years have been quite a struggle to get through in all ways - mentally, physically, emotionally.

I do intend to write a few posts but I’ll backdate them to when I had those operations, or when those situations happened.

In the meantime, here’s a status update for any who are still following this blog. It’s not the most fun read though.

Ill health and fighting with doctors

Too young for menopause

I had had already 6 operations for endometriosis and adenomyosis, including a partial hysterectomy. I still bled every month from my butt, and had all the awful monthly cramps and migraines. Plus the worsening breast inflammation (cystic mastopathy) from the monthly hormone cycle.

I wanted my ovaries out.

Two gynaecologists, including the hospital that did my hyster, said that at age 47, I “was too young for menopause”. They didn’t give the pain, anaemia from the bleeding, and the organ destruction the endo was causing any weight in their decision. Just that my osteoporosis might appear a few years sooner than if left on a natural timeline.

A new endo center had opened at the hospital that manages my arthritis and monitors my breast cancer. I had a long appointment with the department head, and after consulting with the breast cancer center across the hall, they agreed to let me have an oophorectomy in 2023 - the seventh and final operation for the endo.

They found more endo on the ovaries which had stuck them down against the pelvic wall with the ureters and kidneys. The pouch of douglas was inaccessible with endo lesions, and there were extensive adhesions throughout the pelvis, pulling in every direction - no wonder I was in so much pain.

The immediate switch to a menopause body has been a roller coaster. While there is less pelvic pain, the new hot flushes, increased migraines, and decreased concentration are ongoing issues.

The nasal infection

It took 5 years for an infection in my nose - originally caused by extensive black mold exposure - to be taken seriously, despite it bleeding every day.

By that point, it was into the cartilage and heading for the brain. Various ENTs had ridiculously dismissed the infection as acne (WTF?), allergies, problems with the nose piercing (although that was on the other side, far from the infection!), and acid reflux.

If I were not in Germany, I would have considered suing for malpractice.

Finally I found one who matter-of-factly said the problem was purely mechanical and an easy fix. An operation in 2024 fixed the deviated septum, stopped the air drying out the mucosal lining of the septum, and allowed the skin to grow back over the cartilage. It was a nasty operation, a long recovery, but it has finally healed.

Painful inflammation and a broken health system

My arthritis is auto-immune. That means immune suppressant injections are necessary to try to tone down the inflammation response. But they can’t suppress all the inflammation - there is simply too much of it.

That means I’ve had to undergo many tests, across the medical disciplines, just in case it is cancer. For each test there is a 3-6 month wait.

Various tests have shown worsening inflammation everywhere:

  • neuralgias from inflamed nerve sheaths (feet)
  • bursitis (shoulders)
  • torn menisci (knees)
  • tenosynovitis (hands, wrists, fingers, feet)
  • tendonitis (jaw, neck, ankles, knees, spine)
  • costochondritis (chest wall/ribs)
  • mastitis and cystic mastopathy (the non-cancerous breast)
  • blepharitis (tear ducts) and sinusitis (nose)
  • periodontitis (gums and mouth)
  • esophagitis, gastritis, duodenitis, bowel inflammation (throat, stomach, bowel - the entire digestive system from mouth to out)

None of these are bad enough individually to be considered disabling by the bureaucracy.

But all that inflammation is truly disabling in a single body, both in terms of physical function, and in level of pain.

Unfortunately, a range of doctors and therapists ignore all of these tests and say it’s my fault for being obese. Or I’m imagining the pain, that it’s ‘just’ fibromyalgia and I should relax and de-stress.

Inflammation is not a symptom of fibromyalgia. Obesity does not cause autoimmune inflammation.

Kidney disease but no nephrologists

As the kidney blood tests are consistently worsening, other types of anti-inflammatory medications are forbidden. The failing kidneys are causing problems for my heart and blood pressure - failing kidneys spike blood pressure, which in turn causes the kidneys to fail faster.

Thankfully, Jardiance (empaglifozin), a medication used off-label for non-diabetics to support poor kidney function, has been a huge help in getting BP back to normal levels. It hasn’t done anything to resolve the complex cyst that is eating one of the poor kidneys from the inside though.

As I am not an ‘acute’ kidney failure, not a single nephrologist in or around this city will allow an appointment. The cyst is monitored every few years by a urologist.

This health system is so broken.

Anaemia but no haematologists

I had nearly hit zero on the iron blood test and had a very low red blood cell count when they finally ran some extra tests. They looked for why I was so exhausted and why my arms and legs were numb - iron and folate anaemia.

The doctors are still not sure why - theories were endometriosis, then the constant nose bleeds, then gastritis, plus complications from the kidneys. Gastritis means you don’t properly absorb the iron you eat.

But as all the haematologists in the region refuse new patients, and other doctors refuse to administer iron infusions, I’m stuck with eating iron and suffering the stomach aches and worsened gastritis caused by the tablets.

Work, energy and a changing industry

Along with the every-day tasks of living - bathing, getting clothed, toileting, visiting doctors, getting tests done, dealing with bureaucracy, eating, sleeping - work has had to be my number one task for brain energy.

With massive constant headaches, vision disturbances, the nose operation, and generally higher pain levels with even less pain relief, concentrating enough to write something coherent and interesting has been nigh impossible.

But, I am still writing almost weekly blog posts for draw.io and help for the online diagram editor. And I edit the occasional PhD and Masters thesis for students who want to do well.

Unfortunately, all the other writing, editing, and translation clients I had had through Upwork and privately have run off with content generators. It’s cheaper and faster to use ChatGPT, Grammarly and Deepl than to pay someone to write something accurate and useful.

ChatGPT is a terrible way to write anything important.

The problems with AI-generated content

In the last master’s thesis I edited, ChatGPT made up 100% of the references. It cited articles that did not exist, fictitious medical journals, non-existent volumes to existing journals, and made up all kinds of ‘facts’. Reference checking took days, plus more to locate real research that could be cited instead.

In the body of the thesis were sentences that explicitly mentioned the content was generated - telling the user in this section they ‘could write about issues A, B and C’. It was an absolute mess. I hope her supervisor never saw those drafts.

Theses and postgraduate publications are (still) meant to be your own work. AI-generated content is, in essence, pure plagiarism.

Human editors and human translators still do a much better job - humans are more accurate, humans can fact-check, humans understand how to relate topics to each other, and humans can translate nuanced language so that the meaning is correct.

AI tools simply pattern match and mash together what has a high probability of being related. There is nothing creative or original at all, and that’s before you get to the myriad of other jaw-dropping problems, not the least, the IP and copyright theft, and the environmental disaster that is inherent in all of these content generation tools.

I am utterly demoralised.

Both at the tools and the companies who created them and stole all the training data, and the people (the majority?) who love and use them.

Rising depression

I want to change industries into something that isn’t overrun by AI.

But, my ill health is a very physical barrier to moving into a more creative, craft-focused work life, let alone all the other problems that comes with low-paid artists, although this is the direction I would love to take.

It’s all too overwhelming.

The frustration, the worry about income, the desperate wish to protect my livelihood, the disgust for AI generation and how it is all based on theft and laziness. The despair at the state of the world - the wars, atrocities, politicians, policies, hate, bigotry, abuse, unfairness. Some really nasty family turmoil that has deeply hurt and reopened past trauma wounds. And of course, the chronic ill health and ridiculous pain levels that doctors never take seriously, and the broken health system.

In the past, I used to tell therapists that while I had severe cPTSD from my childhood, I wasn’t depressed.

Right now though, I am most definitely and deeply, clinically depressed.

But, as we all do, I have to keep on keeping on.


keeping-on