Year Two

Yesterday I saw a search on my blog dashboard along the lines of “Sarcoidosis infographic”. Perhaps it’s a mere coincidence because someone was looking for one of my experiments like this one, perhaps it was a genuine search. So what would such an infographic show? If it were to show a human body, it would be covered with all sorts of callout markers from head to toe, because such is the nature of the disease – it universally attacks every organ and every tissue in your body. I’ll leave the gruesome details on Wikipedia, but to those that might be interested, here’s the annual review of my health state.

  • I’m now firmly stuck somewhere between level 2 and 3, which means that after 2 (or, if you look back to all the early signs when I had no clue that such an illness even exists, almost 4 years) there is not much hope that this will ever go into full remission and heal itself.
  • Yes, my lungs have gotten better, but you can still see that white haze on the x-rays and I’m still getting a short breath and coughing under the slightest levels of respiratory stress such as simply climbing up the stairs to my flat on the 5th floor.
  • While the lungs have gotten better, my liver and spleen are now regularly swollen like balloons, putting pressure on the chest rib cage/ thoracic diaphragm and other internal organs and causing pains. This also is still true for my renal tract.  Having to swallow antibiotics and other medication during acute phases or such as my current infection always exacerbates the situation due to those organs responding to that stuff.
  • During such bad phases I also considerably feel my knees and ankles swelling and hurting, too, which in addition to the chest pain makes it hard to sleep.
  • After swallowing corticoids for 2 years without interruption I’ve become slightly blobby and my bones show signs of decalcification.
  • My eyes have become considerably worse due to the corticoids raising intra ocular pressure and the illness also attacking nerves.
  • Because of the nerves thing and the corticoids, I have twitches and struggle with concentrating even on simple tasks sometimes.
  • My skin looks awful. I’ve always been pale as a Camembert, but now my skin is so thin and dry my veins show through so intensely, it looks like zombie skin (if you need an extra for such a movie, you can always hire me ;-) ). In other areas the slightest scratch causes excessive bleeding and the wounds from a cut, a pimple or even a simple haematoma now take weeks to heal instead of just a few days. And yes, there’s another lipoma growing under it there.

Aside from the real physiological symptoms, the part that bothers me most is still the constant feeling of exhaustion and fatigue. I haven’t been out to a soiree forever and on the rare occasions when I do, I always need an extra day to recover. I go to bed around 8 PM on most days now like a school kid and often fall asleep only half an hour later, only to wake up at 3 in the morning from the pain and then the cycle starts all over again. Even simple tasks like cleaning my flat completely drain my batteries. Does that all sound terrible? It sure does, but somehow I still manage to soldier on…

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