I haven’t had a computer for almost a month now. That is the reason for my absence. Typing on my mobile phone is a great exercise, but I couldn’t and didn’t wanted to write a whole article on it. So I read Marion’s articles diligently and dedicated myself to everyday life. But I was reminded what it was like in the beginning.
Freshly diagnosed patients are hereby gladly supported by us, please let us know and ask, we know what it is like when you are confronted with this diagnosis at the beginning, you are completely overwhelmed and in addition there is a mountain of paperwork and you are nowhere informed. I would have liked somebody with such a job, someone who takes me by the hand and tells me what I have to do.
I didn’t even know what I was right about, what to do in such a situation and in what order. I don’t know a lot now either.
I cried first through two days and two nights after the diagnosis, said goodbye to my life as I had lived it until then, felt sorry for myself. Then through support-groups and Facebook groups I learned one by one what to do. I didn’t know what „medical service of the health insurance companies„ (MDK) is, or what they do, how to apply for a severely handicapped card and what to do with it and what not, what a „social association“ is and what they do for one… and much more.
Every day I had appointments and something to do. I partly managed my tasks with a project management tool, so that I have an overview of everything, don’t forget something and the results don’t get lost. Just like I used to do at work. It’s not even an exaggeration.
While I was operating the bureaucracy, I read countless documents about this disease, I studied it, if you will say so, so that I understand what is happening in my body and brain, why are the healing chances like they are. Dealing with forum postings day in and day out, getting to know other patients, is not easy. Reading about other people’s symptoms is a drag down – is all this waiting for me? Getting to know other patients was good, “understood” without me having to explain, the phone calls with Marion, for example, were really good – whereas good is relative, if you can call crying positive… But there were also contacted with other patients, who I hardly understood on the phone, who sat in a wheelchair or were fed with a feeding tube. Some contacts were frightening.
Now I have a WhatzApp group of five women, all of us somewhere in Germany. All of us diagnosed with MSA. So we help each other and when someone hears something new, has a question, that is the place where it is discussed. We also talk about everyday things, and jokes are also made, we also laugh about ourselves.
What really happened in the past weeks? As always – one step forward, two backwards. A few new symptoms, a few symptoms that I can deal with better. Last week I was in Innsbruck and found out that they don’t have any more places there for the BIOHAVEN trial, which I absolutely want to do… I have an appointment here in Munich in November and I have already been to the hospital in March because of that, I want it finally to know!
And it goes first to Canada, as long as I can, visit my lovely cousin, see the ocean, Bucketlist must be worked off!