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S*T*A*P*H

WARNING: This story may get gross and may contain graphic images!

Remember “My Insect Hell”? A few months later , I felt something extremely painful under my right arm. I tried to tell my attendant but she acted like I was making the whole thing up. I  threw a tantrum and was looking at my right arm and she still pretended that I wasn’t there. The next morning a different attendant noticed a big lump and called my mom. She came down and checked it out and called my doctor. She suggested putting warm compresses on it.  The next day it was bigger and more painful so my mom  called the doctor and made an appointment for me.  My doctor wasn’t there so her assistant saw me.  She told me that I had a staph infection and that I had it when I came to the hospital in July with what people thought was a spider bite. WTF? Now I had to get this thing lanced  – Oh, God!  My doctor referred me to surgery that same day. I was in so much pain, as you can see.  That was nothing compared to what it felt like when the surgeon stuck the needle in there to kill the pain before he sliced me.  Picture that! I could have fainted from the sight. I couldn’t believe what was coming out of there.  I could have puked.  Lucky for him I didn’t.

The assistant doctor knew the ECO (my communication device) and she was telling me about her friend who uses the same device. You don’t hear about that very often. That established my trust in her. She then told me to disinfect my whole house and to use only white towels and washcloths and Dial soap and not to share towels with anyone.

Since then, I’ve had to go on antibiotics a couple of times (not Septra!!) for staph flare-ups.  Living with this is pretty scary and creepy. I feel not quite right.

staph1

My Insect Hell

One sunny Saturday July afternoon I was out in my back garden in shorts with my mom, my nephew, and my attendant. I was watching my energetic nephew playing baseball with my mom. I didn’t notice anything but when I got inside, my attendant saw a red spot on my knee. It didn’t hurt, so I didn’t think anything of it.  Two days later, my attendant tried to get me out of bed and I couldn’t stand. I was in excruciating pain on my knee. My attendant noticed it was swollen. About an hour later, I asked to lie down. I couldn’t take the pain any longer. It was hot on the skin. I thought I better go into the ER. When I got there the nurse took my temperature. It was 102. My heart rate was 140. I was sweating. Dangerous!

 

july 28 sick

 

 

My parents had just landed in New York City for a week’s vacation. Just as soon as they got to the restaurant, they got a call from my caseworker that I had been bitten by some kind of insect and that I was in the hospital.  The caseworker called my sister Victoria, who dropped everything – except her phone – God bless her! – and drove across the Bay Bridge to Kaiser.  My knee was infected and looked like this:

knee1

 

 

I was so happy to see Vicky! She rubbed my back while the nurses and doctors were starting my I.V. antibiotics.  I felt high like I was on drugs.  They stuck a needle into my knee to try to drain the poison out but it didn’t work. They also tried to put a catheter in me so I could pee but I refused.  I’d rather just pee on myself. They took me up to my room where there was a big bed and a T.V. That night Vicky stayed there with me the whole night.  I couldn’t sleep because I kept getting interrupted by nurses coming in and taking my temperature, my heart rate, and trying to give me my meds.  The I.V. machine alarm was going off every time I moved, which was all the time. I kept waking up jolted by the noise, which I thought was my ECO, which was turned off. Man, I was high and I was not drunk.

Vicky jul 29

 

 

I didn’t have my medicines with me or anything else that I use every day. So my caseworker had to go to my house and bring my shower chair, the charger for my communication device, and a change of clothes.

A lot of different people took my blood. What did they want with all that blood?

We're coming, Ana

My parents did not sleep at all as they took an emergency flight home.  It took a while for them to get to the hospital, but they eventually did.

My mom slept in my room on a little sofa.  The next morning, she went into my bathroom to take a shower. After a little while, I heard, “AAAAKK!” I thought “What the f___?” She came out of the bathroom holding her flip-flop. “I just killed a big-ass cockroach.  It crawled out of the shower drain!”  When the nurse came in, my mom told her about the roach. The nurse said, “I need to check it out.” She went into the bathroom. “Echhhhh!” She said she had to report it. Later, a lot of people came into my room and said, “You have to clear everything out of this room and take it home.” But I couldn’t take my wheelchair, shower chair, or my communication device. They wanted to spray all my equipment with pesticides. My parents screamed “She is allergic to chemicals!  You can’t spray her stuff!” So my mom said, “I’m taking everything home” but she took it to the van that was parked in the hospital garage, and brought it back a little bit later.

Most people in the hospital treated me like a person, but one lady clapped her hands in my face and said, in a very high voice, “Oh, pret-ty smile, pret-ty smile!”

The lift over my bed wasn’t working so I had to be lifted out of my bed to go to the bathroom. So they had to make a lift team. That wasn’t so terrible because of the black hunk named Steve who picked me up and put me in my chair. Whenever I heard his name, I thought dirty thoughts. Never mind!

 

Max was so worried about me that he sent me a video telling me that he loved me.

 

After a week I was finally discharged because I was able to take my antibiotics (Septra) orally and my knee was looking much better.  But I had a yeast infection and my mouth was so sore that I couldn’t eat.

 

I'm outa here1

 

 

 

 

 

 

I'm outa here

I was so glad to get home, but my troubles were not over. My mouth hurt like a mother_____ , I broke out with a rash on my face, and my eye swelled up.

 

 

 

eye

 

My mom made an appointment with my doctor’s office (my regular doc  was out sick).  One doctor had no clue what the heck was wrong with me, so she called in another doctor who didn’t help either. Finally it got so bad that I couldn’t eat anything. This time my mom took me to the emergency room.  When we told the ER nurses that I was taking Septra, one of them said, “Oh God, Septra sucks!” Another nurse said that I was not the first person with an allergic reaction to this drug. They gave me some Benadryl, ground up in some chocolate pudding and a prescription to a different antibiotic (clindamycin).  That night the attendant who was supposed to stay overnight with me just quit.  Just didn’t show up.  I didn’t need that!

The Benadryl worked for the reaction to the antibiotics, but it knocked me out. So I spent ten more days in Hell. I’m never ever sitting under that f___ing tree again!!