Well after 3yrs and 9mths I now have a rare complication of a rare condition. I thought I would escape having another medically disasterous year but I have been hearing "you would have to be really unlucky for that to happen, it's so rare"! Well almost ever symptom has returned and I have just completed a week of Valtrex antivirals and Prednisolone. A day after finishing the antivirals I have the ear pain full on and now a couple more of the old symptoms coming back, mild disequilibrium and mild nausea.

I am hating the face pain. I cannot take Neurontin or Lyrica. The neurologist hasn't given me anything else. My Primary Care Physician says the Neurologist is responsible for treating me regarding these problems related to RHS. When I talk to my Neurologist he says that's not RHS and tells me to see my PCP. I am so frustrated. It's like no one cares. Okay, so, I'm having my little pity party. Friday the nurse and I got in to it on the phone. She apologized. Today, they called after hours and left a message that they wanted to see me at the Neurologist Wednesday morning.

I took an Ambien Thursday night and slept well, actually, I slept about 20 hours. Not nonstop, but I was groggy all day Friday. I did feel much better, though. Today I have a nagging headache that seems to be a little worse now. It could be the blood pressure up to high so I will check that and take an Imitrex.

Yesterday I suffered from a terrible headache. My blood pressure spiked to 200/110. I called my husband home from work and he took me to urgent care. The doctor said probably I had a lot going on regarding RHS but that I also had a sinus infection. I came home with Amoxicillin for the next 10 days. I have felt better today but my eyes itch pretty badly and my ears are ringing very loudly. I'm having insomnia tonight also.

After posting my poor oh me blog Saturday I went to take a shower and found blisters on the inside of each forearm. A few on my neck. I nearly freaked out. They are going away but I have had a headache and fluttering in my ears.

Today is not a good day. My entire body aches and feels as though there is a fever in my muscles.

I keep hydrating myself thinking it will help. Sometimes it does.

It's been a while since I posted an update on my diary and now that we've got a spangly new blog system I've got no excuses. I can now post live updates from anywhere in the world!

We've been working on this like crazy over the past few weeks and finally it's at a stage where is usable so it has gone live :) It's not quite finished yet so there's a link to the old site whilst we finish adding the content and other cool stuff. Sorry for all the messing about but it'll be worth the wait... I promise!

Hubby: "Hello all, Just got a call from her and they have decided she has been there long enough and are letting her come home - it is about time! Gads, I am running out of clothes and dishes and the refrigerator is nearly empty. (Actually, I did four loads of laundry on Tuesday and the dishes are all clean, I am really not as helpless as you might expect!) Needless to say she is looking forward to sleeping in her own bed with nobody sticking a thermometer in her mouth every four hours, etc."

Hubby: "Hello all, Just talked to her and she said if her temperature stays down she will be "released" tomorrow."

My sleep wasn't very restful last night, because our new roommate was having weird reactions to her meds. She was hallucinating, and thought she saw a man outside the window walking past. We were on the fifth floor! They drew the curtains around her bed and that helped for couple of hours. Then she was convinced she had to get up and use the bathroom. When she swung her legs over the edge of the bed, her bed alarm would go off and wake us all up! They tried to tell her she had a Foley catheter and didn't need to get up. A short while later, she'd get up again.