My apologies for the length, randomness and disjointedness of this Debbie. I really cannot do any better right now. I’m sure I’ll be able to expound and clarify things in the coming weeks.

On Friday before my appointment, I was scared and I couldn’t figure out why. I said before that I thought I was improving. The Bell’s Palsy had appeared, but I was being treated and the hospital people were just going to just tell me I was doing great and they’d get my hearing fixed.

The vasculitis people [they who treat the Wegener's] were happy with how things were going despite the Bell’s. They reduced my steroids and upped the methotrexate and sent me off to see the ENT. ENT looked in my ears and we talked about the Bell’s and said he needed to get a colleague to look. Then they told me I needed to be admitted for a few days to get my infection under control. Apparently, Bell’s Palsy only applies when they don’t know the cause of the paralysis, they knew the cause here [the infection] so it wasn’t Bell’s and I needed to have more aggressive treatment – namely injections for the steroids and antibiotics.

I managed to do okay at first, Weasel and I got some lunch, I have her a list of things I’d need. We arranged to see each other during visiting hours. I didn’t have a time-line for the stay and I was so tired, overwhelmed, scared… Anyway, I wrote a few things down while I was there.

Friday Afternoon
I was scared about the hospital appointment today and I couldn’t figure out why. I guess being admitted might take some of that.
I was more scared for my face I think, the idea of having my face malfunctioning scared me.
I’m tired. I’m scared. I want to go home.
I miss Weasel.
I want to talk to my Mom.
I want this needle out, it hurts.
I meant to ask for my douche [for my nose] and I forgot.
I would like all this illness stuff to stop please.
I do not want to be here.
Please let me go home. Please.

Friday 10pm
Oh sweet girl, it will be okay.
These things hurt when they happen, mostly while they happen – but they pass.
You’ll look back with horror and sadness for what you had to live through, but you’ll live through.
If I could hold you through words, paper and pen I would.
If the sadness could be bottled and dosed out over time in more manageable chunks I would be the bottles.
Oh baby. Remember you are loved.
Feel homesick if you have to.
Feel angry if you have to.
This too shall pass.

I’m not sure if the latter part of that is unique to me, but I talk to myself like that when I’m particularly distressed. I’ve never seen it written down before though, I usually just say it to myself.

I didn’t have to have the IV polls or anything, it was a small needle in my arm that had a tube attached that they could inject through. It was more uncomfortable than anything, but there was only one or two comfortable positions to hold my arm in before it started hurting.

Saturday 10pm
I have started song rations, I can listen to four or five songs before the pain is unbearable. The headphones are awful [these are the ones that come with my hearing device]. I have such vivid memories of the songs. I nearly came. Music feels so amazing – it steals my breath.
My hearing is still dodgy at best, but I can hear when people talk more. I can listen to music and some TV.
I have spent the day crying off and on. I am tired.
I am watching a film called Downfall about Hitler’s last days – brilliant.
Weasel was here for four hours this PM. She gave me TV, internet and phone access. We had crummy sandwiches downstairs. There are Reese’s Peanut Butter Cups to be had in the hospital though! Drinks [pomegranate juice mmm]. Talks. Snuggles (Bliss!, Rapture!, Heaven!)
She has gone above and beyond duty.
I am so grateful to her for taking care of me.
I pray for an early release [they told me earlier in the day it would be Monday at the earliest] but my track record for this illness does not bode well. I suspect it will be Wednesday [the latest they suggested]. My lip sticks out more. I didn’t spit my mouth wash and I can wink. Maybe I will get a Monday release.
I am expecting an injection soon – then I will sleep.
Except I took my sleeping pill. Sleep…
Two very long days.
I am infected now I sleep.

The protocol was clearly working, my hearing was already improving, but I was having issues with the hospital environment and it was difficult to see progress and keep perspective.

It took me a little while to figure out the schedule. It was silly to take my sleeping pill at 9-whatever because I had to have an injection at 10. The schedule was one of the hardest things for me. They did morning rounds at 6:30 [although I woke up around 5/5:30 the first couple of days because of stress]. They didn’t feed us until 8:30/9 though so I was starving by the time breakfast came round. At the weekend they don’t bother with menus and whatnot so I was confused by the whole process and I was still having trouble hearing staff etc. The doctor did their rounds between 9 and 11. Lunch was at 12/12:30. Dinner was at 5 – so I was hungry again by 9 and I didn’t dare ask for anything. They drugs came and went at all times. I was having three injections a day. The anti-viral meds came five times a day. They took my blood pressure a lot. I understand the logic of wanting to keep an eye on people, but I am on beta-blockers which keep my blood pressure low for me so the misstep in logic bothered me a lot.

Sunday PM
I have fallen into the hope trap. My smile is nearly back and I know I have two more injections before rounds tomorrow.
I am scared to hope. I want to go home so badly.
I want this thing out of my arm. I want my DVDs, computer and freedom.
I want my wife. My boy.
Clothes – all my clothes.
Food – anything, anytime!
Showers!
Subtitles! Privacy!
Please let me go tomorrow.
Today was very up and down.
I continue to cry.
Mal & Stoat came today. They were great. Mal gave me permission to cry. They called my brave.
I have Peanut Butter Cups and Spider-man movie [which I listened to with headphones, resting my ears during the ad breaks]. I am trying to stay positive.
In a bid to see silver linings I will say that being deaf was useful for getting out of small talk. No idle chatter for me. It was a relief.
I also liked sleeping in quiet – but hated my heart beat.
Stupid hope. Keeping me up now – despite sleeping pills. Bah.

Obviously, my heart really wanted the Monday release, my brain knew it was unwise to get my hopes up. I can never stop myself doing that sort of thing. Like when I get obsessed or worried about something – which I did 1000s of times this weekend.

Re: Monday written Tuesday AM
Awful.
Got told one more day.
Meds bolloxed completely – the pharmacy had my chart all day so no meds for me. Including injections and anti-viral stuff was upset (overly) by the whole thing and felt so stupid.
I had to have more blood tests before they’d give me the methotrexate and the woman who tried to do it couldn’t find a vein to save her life. So I got poked eight times (once in back of hand). Finally, she got a colleague to do and it he got a vein and the blood first time.
Doodle came up to see me a few times which was nice. Mal showed up after work and they stayed until Weasel.
Thank god for these wonderful people.
Weasel just lays with me but it makes me feel so much better.
I am very blessed.
Handwriting is shaky at best. Feeling very out of sorts. Home will fix it.
Watched House of Flying Daggers on TV last night. It was pretty [very beautiful] but confusing. I would rather watch an ‘ugly’ Kevin Smith film any day with good dialogue and plot.
I’ve been told I can go home after a hearing test. She’s calling to get the time now. Please let it be soon. Home has been my sole thought since my arrival. Home.

Getting poked that much with the needle sucked. God it hurt, and of course it was stressing me out and she just kept telling me that the more stressed I was the smaller my veins would be and the more it would hurt. I can’t turn off the pain and upset. After she left another girl came and wanted to take my blood pressure. I’d just had a new injection needle/tube thing put in on the right and my left arm was the one that had just been poked eight times. She did it on the left. Then I had an hour to calm a bit and the other guy showed up.

There were other logic deficits as well that I had trouble with. I’ve been medicating myself at home for months, I bring my drugs to hospital with me. They lock my meds in a cupboard then dish them out according to one chart. If the chart is gone, I get no meds. So on Monday when the doctor said I needed to start ear drops they sent my chart down to the pharmacy and they kept it all day. I missed loads of my doses and I couldn’t have any painkillers and I was so stressed about it. I just wanted to let it all go, but I couldn’t.

On Tuesday, as soon as the doctor walked in I started crying, I was so sure he was going to tell me I had to stay another day. Thankfully though I could go as soon as I had my hearing test and had my drugs checked by the pharmacy. I was so desperate to go. I asked if someone else could collect my drugs later and let me go home, they said yes. So I had a dose of the anti-viral at noon, the next one was at three then I could go. So I arranged for Weasel and Stoat to be there at 3:15. At 3:25 I asked the nurse for my drug, I was ready to just miss the dose like I had yesterday if I had to. They found the last dose and we packed up and left.

Going outside and getting in the car was wonderful. I was still so tense though. I didn’t relax much until we pulled in the drive. First thing I did was get in the shower. Long, hot, uninterrupted and I could dry off completely before putting my lotion on and get dressed after my lotion dried. In theory, turns out I’m as weak as a kitten. I showered okay, but Weasel had to put my lotion on. I didn’t dry my hair. Weasel cycled back to the hospital at 6:30 and collected my meds, 3:30 release is 100x better than 6:30. Thank god for her.

The anxiety disorder definitely reared it’s head during all of this. I was a complete wreck. I cried on and off the entire time. I couldn’t stand the schedule and having to do everything with an audience. I hated not being able to get my own water [for example]. Weasel really said it best, hospitals are scary, boring and lonely. I am very independent and I hate asking for things.

Today I’m still really tense and sort of shaky. I feel like there are things I am supposed to be doing, but I don’t know what they are and it’s making me more nervous.

This has been so incredibly hard to write, but if Debbie has taught me anything in the last lord-knows-how-many-years it is that getting it out is better for me. Writing all of this down helps me process how I feel and get it out of my system. So perhaps now my chest will loosen and I’ll be able to stop feeling so overwhelmed.

I’m back to the doctor’s tomorrow. My sick note has long since run out [or has it run out today? I've lost all track of time], my birth control and antidepressants need a review and I desperately need to have advice on relaxing. This hospital stay fucked me up.

Last night I just sat with my Simpsons DVDs, I talked to the boy on the phone for the first time in a month, I had pizza [crunchy food with flavour!!], I talked with Weasel, I called my family. They’re all in Phoenix with Blanketgirl and her family for Thanksgiving. I so want to be there with them.

Today has mostly consisted of sitting around being so very glad, grateful and happy to be home. I’ve been trying to breathe and stay calm, it hasn’t really worked. I’ve watched more DVDs, I’ve updated loads of programs and downloaded many things [my poor computer hadn't seen any action since the 11th!] and I’ve been listening to music!! Everything sounds a bit tinny and far away, but I can hear it and I’ve heard this so much my brain fills in the holes my ears leave. I’m just so happy to have some music. It is useful for blocking out the in-my-head hospital noises too. I can hear the nurse’s station phone ringing and the beeping of the the blood pressure machine. I’m definitely better than I was 24-hours ago, but I think it’ll take me at least another two days to return to anything normal.

The other thing bothering me is my body. It doesn’t look like my body anymore. My legs have been rock hard for six years, I’ve been lifting weights at the gym for three years, I work hard. My legs are becoming softer, I can see it. My face looks strange, with my nose saddle and half working smile. I don’t see me anymore, I don’t feel like me.

My arms look like an addicts.