geekery, drawing and then some

Posts about medical

Making my own medical file

Because of the crazy amount of medical data I have and have to deal with I decided I needed my own medical files. Not in the least because it seems to impress doctors when you slap your file on their desk and make it clear you know exactly what happened and what medication you take and what side-effects they cause.

To make my medical file, I used Scrivener, MultiMarkdown and eventually LaTeX.

First, I started out with a structure that made sense:

  1. Conditions (my various illnesses)
  2. Medication 2.1. current medication 2.1.1. prescribed 2.1.2. unprescribed 2.2. historic medication 2.2.1. prescribed 2.2.2. unprescribed
  3. Medical contacts 3.1. doctors 3.2. hospitals 3.3. pharmacy 3.4. insurance
  4. Surgeries
  5. Log
  6. Diagnostics

Then, for each of the these parts I made a folder in Scrivener and put files in it for each section or subsection. In 'Log' and 'Diagnostics' I put a folder for each year, and a file for each incident.

Using MultiMarkdown I could easily make the tables for my blood-tests in 'Diagnostics', and refer to different sections of the document. I put it all in Scrivener because that way I can keep important files in my Research folder and easily refer to those.

With the new 'Folder Sync' feature in Scrivener 2.0 I can easily sync all the files to a folder and transfer that to my EEE1. I can either bring the EEE along with visits or a printed copy (or both, because with the EEE I can easily add new info to any of the files on the spot -- saves me a lot of writing it down and then typing it in later).

Because MultiMarkdown easily converts to PDF (through LaTeX) I have a fancy printable file with a coversheet, an index, my name and the date printed on each page, and a table of contents. All of this automatically, no fiddling with layout and such required after the initial set-up.

It took me quite some time and energy to make this file, but I feel really good about it. I have a better idea of what we have tried already and when I visited who and when my last blood-tests were (need to get that vit. D checked again).

It also showed me I have roughly one hospital visit every two weeks (average for the last five years). Wow!

  1. In case you wonder, I created an encrypted container with a crazy long password for the medical info so no-one can accidentally see it or access it should I lose my EEE. 

The ongoing search for proper medication

Campanula flowering.

Most people with RA know the process of finding the right medication for their situation. The disease behaves roughly the same in every person, however, the specific differences make it a lot harder to find proper medication. No one pill will fix everyones issues. Some medication works for about 75% of the cases, and then the other 25% has the option of using some other medication which, again, also only works for 75% or so.

Trying to treat RA means having to try different combinations of medication, and different medications on their own.

I've had a mild form of RA so far, yet mine seems pretty stubborn. It reacts well to MTX on its own, although it never goes away completely. Once I experienced some sort of remission; or at least, a complete absence of pain. This happened right after my surgery, while I had loads of opiates and other painkillers and antibiotics and what not in my body. It lasted for about two weeks after surgery, and I think that the summer itself helped. My RA acts up badly during wet weather (which, here, means all year except those few summer days. That year however, we had a heatwave, which caused entirely new problems).

Only once before I seemed to have started to get in under control. At that time I took part in a trial with a new form of Interleukin-1 blocker (a so-called 'biologic'). As a side-effect of that blocker, my white-bloodcell-count dropped briefly, resulting in me not getting it for two weeks or so, and after that I could continue. It felt great, the pain almost completely went away in a matter of weeks -- RA medications tend to take months to work properly, making the whole search harder.

And then I learned about my cancer-gene. And then they terminated my participation in the trial. The blocker had a slightly increased risk of cancer, and with the gene the doctors -- understandably -- did not want to take that risk. After all, they needed the most neutral information possible to get it on the market (that never happened, I learned a year later).

Last Thursday, when visiting my rheumy, he brought up biologics again because my symptoms didn't go away. He wanted to discuss with the RA-team if I could and should get them, and which ones. He explained the higher risks of cancer (mostly lymphoma) and how they don't really know how it all worked yet and how RA-specialists around the world argued about the risks. He said he would discuss it and then phone me the next day.

Of course I got excited, the MTX alone doesn't seem to help enough (highest dosage doesn't take away any pain, just the swelling) and on top of it all, it makes me damn nauseous.

He phoned me, as promised, and explained that the team does not want to take the risk (yet) with my history of having had cancer and that stupid gene. I will start an intensive physical therapy program soon (already planned before last Thursday) and they want to wait and see if that will make a difference (and if so, how much). He also prescribed me a lower dosage of MTX (almost half of my current dosage), a double dosage of folic-acid and anti-nausea medication. I think my RA will get worse these coming few months, despite the summer. I also think the physical therapy will help at least a little bit.

I will know more in October... [MTX]: methotrexate [RA]: rheumatoid arthritis