Hello everyone, on August 2nd it will be two years since Joe collapsed at home and our lives were turned upside down. The last 2 years have been a physical, emotional and financial chaos.
After several months of keeping the campaign inactive - because we thought we finally had an overview of addiional costs and because we both expected to be back at work at this time - we have to restart the campaign again,
Joe is doing much better on a neurological level, but still is unable to return to work. While the neurological meds slowly do their work, his brain chemistry is still slow and he can not concentrate for long, let alone get back to full-time work as a writer or editor. I am still expecting him to get back to the bEast he was before - but our goalposts have been moved for the time being.
Brain surgeries do weird things to the system, so he sleeps a lot, has mild equilibrium issues and hence barely moves around by himself, if he can avoid it. This means, we're relying a lot more of cabs to get to doctors and will have through a long session rountine of Physical Theraphy. Both come with additional costs that we hadn't planned on - and we can barely cover. In addition to these costs, he neurological meds are still being leveled out and we have additional costs for meds until our neurologist has found a combination that works for him. In other words, we are buying meds on a monthly basis, instead of every three months - and even with the German coverage system, these things are expensive.
My own health is still keeping me grounded. The optical nerve has stopped healing and within the next six months my brain should have adjusted to whatever sight I will have - at this point I'm at about 40 - 50 percent of a regular persons sight - things are still blurry, colors are quite vague and my contrast are almost non-existent. I invested money we don't have in a set of specialized glasses with a yellow tint, so I have at least a few additional contrasts. These glasses were, sadly, not covered by my Health Insurance.
I am being treated by seperate departments of a major clinic complex, since I have now been diagnosed with oedemas behind both maculas, while my general "condition" is still not settled. To completely exclude MS and Neurosarcoidosis, I will have to undergo at least one more MRI, several neuro-immunological and neuro-visual tests, in addition to test to exclude conditions like uvelitis, etc. This means, of course, that I can still not go back to work, since the re-introduction schedule demands that I can not miss days due to appointments or sickness.
We have applied for all kinds of government support and have grudingly decided to apply for a care level for the bEast, in case he is still relying on help when I am back at work early next year. At this point, the applications have either been denied or we have been waiting for months to hear back from the according authorities.
Joe has grudgingly applied for early Social Security - and with this marginal additional income we are at about the same income level we had when I was working full time. Back then, we barely managed to make it to my next payday ... and that was without all the additional costs we have to shoulder at this poiint.
We both passionately hate to reopen the campaign, but once again things are out of our control. We did our best, but have reached the end of our (financial) rope. As usual, any donation - no matter how small - is deeply appreaciated.