It’s Been A Really Long Time……

by Hannah the Zebra

Hi Guys,

It’s been almost two months since I’ve posted.  The time has been eventful, both good and bad, with both things accomplished, and a lot of mourning of my limitations.  I have to say that I am deeply touched by how many of you have checked in regularly looking for new posts.  Thank you. That has heartened me, and I need heartening today.

I got a cold, which started out very mild.  Then it felt like it had moved into an infection, but I had no evidence, so I couldn’t start antibiotics.  By the time the skyrocketing pain gave me evidence, the infection had taken hold.  The first antibiotic, which has worked for years, didn’t work, so we moved on to another one.  For most people that wouldn’t be a big deal.  But for us immune deficient folks, it’s a major deal.  The Augmentin hasn’t really worked effectively for the last three infections, which means that my body’s microorganisms have probably developed a resistance to it.  Which means that the list of antibiotics that do work has just grown shorter by one more.  Which is, shall we say, worrying.

By the time we changed to Azithromycin, I had both a sinus infection and a lung infection. The infections are improving, but I feel terrible, and am anxious to start feeling better.

And here’s the really difficult part:  this is my life.  I will be going along, doing what I’m supposed to do, taking care of myself, and for me, generally doing pretty well.  And then bam.  I get sick and the world seems to end.  I don’t get sick like a normal person. I get SICK.  And I hate that.  I hate that it reminds me that my life hangs by a far more fragile thread than most people’s. A  life in which something as simple as a mild cold can turn, seemingly in a heartbeat, into a complicated infection in which there are no guarantees that antibiotics will work.

Two days ago, one of my best friends said, “Hannah, none of us can really understand what it is like for you.  Not me, not even your husband.  We can empathize, but the only people who can truly get it is other immune deficient people.”

I started to cry and responded, “It’s so lonely!”

And her soft answer was, “I know.”

Love to you guys,

Hannah