It happened what did not have to happen
Here I am, after some time, perhaps too much, that I don’t write. The reason is unfortunately ugly, painful, angry, A flood of emotions that devastated me in this last week. Because? because unfortunately what happened that shouldn’t have happened.
This rare autoimmune disease bastard reactivated. So … of the series “but let’s go a little bit to break the sordamaldestra who right now seems to me to be recovering”
Quick summary: I return for Easter from London to Italy … on the 20th I have a little fever. Flu, I think. In my house my parents also took it with me, This Wednesday. Fever that does not go away, severe headache. Rest quiet, until on Saturday the head starts to ache behind, the brains begin to ache … and I fear them.
First aid in Florence, then immediate transfer to Milan.
I am hospitalized at the Dimer as always, now I’m at home. Reactivation too fast. Today I am calm. but I’ve been through four days of hell. The pain, the anger, the tears, the return to London, the work once again to be postponed. And especially now what therapy to do? The idea of going through the chemo cycles again, getting sick again, the cortisone, losing my hair again.
Speaking with the doctors I also said “no but are we sure it is reactivated?” … one looks at me and laughs … “but I don’t know, do it yourself, you have the pcr a 292” … as not mentioned .
The bad thing about self-deprecating diseases is that they come back. They keep themselves at bay but at the slightest stress or other they reappear. Now I’m not stressed that I have had any these days, maybe the flu has sent my immune system crazy and makes it work too much. Having a rare disease, I don’t have a precise medicine. The chemo treatment was broad spectrum, now I had the maintenance treatment which turned out to be a crap and not able, via piccina could not do it.
So today I found out that she will have to do a good infusion of cyclophosphamide to get the blood cells back in order. And then two infusions a year of an immunosuppressant. (hoping this is more functional).
What happened did not have to happen, and I don’t even know how it could have happened. I realized how fragile my body has become, how now it does it on its own as if my will did not exist. Unfortunately, this is living with an autoimmune disease, always being attentive … a strange feeling, which lately I had almost forgotten when I was well. Well .. poso was enough to remember. A hint of pain and I immediately understood.
Looking at the photo of my feet on the lawn of my house in the garden for Easter Monday I think if something like this happens, maybe it has helped me with other things that I can’t see at the moment … but maybe I’ll understand them later.
For the moment I hold on, I was silent, introspective, I cried a lot, I got pissed off more, I wanted to scream, run, run away and be alone …
something of this I have done. Something has helped.