Chronic Illness and Mast Cells, Opinion

Finding a Doctor Willing to Listen

I am laying here tonight propped up on multiple pillows, exhausted and unable to sleep due to the severe angioedema I have been fighting all day.  I keep contemplating my predicament, trying to figure out what my next step will be in finding treatment.  My current Allergist/Immunologist doesn’t really listen to me. I’ve requested he call one of the mast cell specialists, but there seems to be no interest in doing so.  I’ve found myself, once again, between a rock and a hard place.  Frankly, I think I’ve been in that place for many years, but I keep trying to push forward convincing myself I am not.  My husband went with me to my last appointment.  He is always the calm in most situations.  He was extremely upset and angry when we left my appointment.  I had been up all night prior to my appointment fighting an anaphylactoid reaction, and the only thing offered by my doctor was a nose spray and a steroid shot.  I was grateful for the steroid shot, but it only worked for a day and then things got much worse again.  At m appointment, I expressed that the medicines are not working.  Benadryl and Hydroxyzine barely making a dent.  I explained how much worse I had been since my first Xolair injection (which I reacted to) the first week of July. Now here I am and it is September.  I’m still not back to my “normal”.  I’m reacting worse to all of my triggers and to new triggers.  I say my symptoms are ten times worse, but my husband says they are one hundred times worse.  It has been a miserable 2 months, and I just want to know when it’s going to get better.  I have swelling in places I have never had swelling and all at one time.  My immune system has completely lost all sense of reality and gone nuts.  I am not being heard when I go to the doctor.  So here I lay in bed, my neck, head, and chest is being squeezed from the swelling.  I look like I am about 7 months pregnant, my bladder and skin feels like it is on fire, my eyelids are swelled out past my eyeballs, my vision is blurry, and I can’t lay down to sleep because the pressure gets worse in my head when I lay down.  This is how it’s been for 2 months.

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