The story is so long

My medical history is so long that it almost never ends (oh my, I hope it ends soon).

Yesterday, talking to a friend of mine, she told me that she didn’t quite understand what I had had. Or rather he had guessed it but not entirely. Then I realized I never talked about it, never explained. Maybe I had made some mention of it in some of my old posts, but without ever going into details.

A little out of luck (as it is not yet over) and a little out of fear, sadness and even shame and a lot of guilt. Now I feel ready, and I have found the courage.

The photo I put is of a blackboard that is in the kitchen in the house in Florence, where there are things that happened from 2013 to 2019 (before I got sick and there was the pandemic and then London). Metro tickets, museum entrances, dinners, amusement parks, everything. And so it is from there that I will start on this medical journey (I leave out the technical details that I did not understand either).

April 2019 very strong sinusitis and earache, I go to the emergency room twice and both times discharged with antibiotics and other medicines. Then all this becomes labyrinthitis and a very strong cold and my hearing on the left goes away (I think, oh well, with all this mucus sooner or later it will come back). This passes me and I start to have very strong pains in the neck that I can not move, sleep, eat … then magically after like 15 days and fans of all kinds this passes as well. First resonance where then everything seems fine. At the end of May they tell me that hearing on the left will never return, but I say, oh well I have another one and in any case I am fine so that I am calm.

June 2019 I start to lose hearing on the right. First hospitalization. First injections of cortisone and I come out with the diagnosis of an autoimmune disease, a rare syndrome and I will have to do some therapies. At least ten.

From July 2019 until February 2020 I feel terrible. This therapy does not work, I have very severe pain in my head, it never goes away. I go around doctors, specialists, and they tell me that maybe I don’t have this syndrome but there is something but it’s not clear.

February 11, 2020. MRI and I am urgently called by the hospital to be hospitalized immediately. I have such severe inflammation of the meninges that my cerebellum is herniated (i.e. slipping where it shouldn’t go). In short, I risk taking a picture of it. Hospitalized with antibiotics bomb in the vein, after a day I’m fine but they still believe in this autoimmune disease. I am discharged and no autoimmune therapy.

The pandemic begins and I am hospitalized two more times in March and May. (different hospital from the previous one). Always the strong headache that comes back. At the end of May they give me antibiotics and I’m fine. I have a great summer. In September I stop the antibiotic treatment and the headache returns again. New hospitalization. They decide on the operation.

October 2020. Mastoidectomy. First head operation. Hospital in Milan. They basically scratch the mastoid (bone behind the ear) and what they find is removed and taken for analysis. Perfect operation. After two days I completely lose my hearing on the right too,

I am deaf.

November 2020. Operation to put cochlear implant on the right (now impossible on the left). Operation postponed by 15 days for cold sores. December 2020. I have the implant. (second operation on the head). On December 15th I am “turned on”. I hear again but understand little.

In all this her husband is in London and they do not return due to Delta variant.

December 22, 2020. Emergency hospitalization always in Milan. I went for a checkup, the headache was coming back, the exams are not good. I remain hospitalized and remain in hospital until February 20020. Examinations, cross-examinations, everything possible. Brain biopsy (third head operation). I am sent home but no one knows what she has

May 2021. New hospitalization in Milan to take other exams. Now the rare disease team is looking after me. The two days of hospitalization become fifteen. New brain biopsy, this time in the middle of the neck. (fourth operation on the head).

The diagnosis arrives: the technical term is difficult but I explain what happened to me. I caught a virus that had DNA very similar to the brain. Having been this very strong virus and I was weak and obviously with a genetic predisposition, I developed an autoimmune reaction. My immune system has attacked the meninges and the petrous rocks (which are nearby and which regulate hearing). Not being treated in time, she became chronic.

June 2021. Cortisone bombs, immunosuppressant therapy begins. Cyclophosphamide which is a chemotherapy drug. The sessions should be six. It depends on how I am. It’s not over yet.

In the meantime, however, I’m fine, I no longer have a headache. I changed the ear map several times because the therapy affects the acoustic nerve on which the cochlear implant rests. I went to London, did a semi-transfer. I start to feel a little better (apart from the mask I don’t understand anything).

I have sordamaldestra adventures to keep me company. Those things that happen to you in general, and then even better when you are deaf. Like the subtitles that aren’t on TV, the help centers that are only on the phone … ahahha.

In short, the husband who finds his wife deaf but always stupid.

The story is so long that he didn’t really get into it on instagram.

And that’s not all. And then a futtitinne, words, laughter, drinks, shopping, travel, the desire to laugh, resize everything, maybe change jobs, who knows what to do … who knows.

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