I'm going as a human pin cushion for Halloween, how bout you?

I was released from hospital yesterday to do IVs at home for another four days. Needless to say I was overjoyed to come home. This morning when I woke up there was no drilling, no beeping, and nobody busting into my room. Pure bliss.

And my day was going along just fine until I went to do my afternoon IVs. I hooked myself up to my drip, and within in no time, my arm began to swell at my IV site and the drip got slower and slower until it wasn't dripping at all. I had a mini meltdown and then dragged myself to back up the hospital. I was upset on the bus and wondered if the other passengers thought I was going as a depressed girl for Halloween.

I waited for a bit when I got to hospital and then the doctor came to put my drip in. I knew my vein options were limited, so I gave him permission to use the big vein on the inside of my right wrist, knowing full well that it can be a terribly inconvenient and painful place for an IV. He got it the first time and was pleased the hadn't had to stick me seven times as he had done earlier in the week. He taped me all up and then removed the cap so he could add an extension to the cannula. After he removed the cap and before he could twist on the extension, I began to bleed. The blood trickled under the fresh, clear tape dressing covering the cannula and I momentarily wished I had Halloween plans - the bloody site would have made for a really good Halloween prosthetic. I imagined I was at a party and heard guests saying, "Wow, looks so real!"

I gave myself some of my meds and then had a nurse bandage my hand and wrist. I left and got back on the bus and now am at home. I am doing my best not to use my right hand so as not to irritate the line in my wrist. It kinda looks like my right hand dressed up as a mummy for the holiday. But it's a really crap costume and I am not impressed.You wouldn't be impressed either. Trust me.

So right hand mummy costume is not my thing, guess I will just stick with being a human pin cushion on this night, All Hallows' Eve.

"Despite all my rage I am still just a rat in a cage"

So 1995 The Smashing Pumpkins, so teenage angst, but I am feeling them right now. These lyrics are from their song "Bullet With Butterfly Wings" and I am feeling all bullet right now, all rat in a cage. The last 24 hours I have felt out of control and trapped. Everything that has been annoying me the last week feels as if it has intensified. I am constantly suppressing an urge to hit someone in the face. Worst of all, nothing seems funny right now. I can't find the humour in anything, and this, above all else, is enraging me.

48 hours ago (Tuesday) I was feeling pretty happy. The doc did my spirometry (test that measures lung capacity) and my numbers were going in the right direction. Doc had said I might get out Thursday (today) and I was chuffed at the idea of going home. But as Wednesday wore on and I still hadn't been seen by the consultant,  I started to realise a Thursday departure was not looking likely and my heart began to sink.  And before it could even hit the bottom, horrible, impatient, cranky, rude, mean, negative Ashley, fueled by frustration and exhaustion and hormones, emerged.

Everything was...is.. getting on my, or Evil Ashley's, nerves. Last night it seemed like the noises would never end. Every time the beeping on the ward would stop, an ambulance would start wailing below my window. And when there was no beeping or wailing, I was being tormented by drunks loudly singing military marching songs. I rammed my ear plugs in only to find that I was such a state that I could hear the blood pounding in my ears.

I felt like I was losing it and the only thing I could think to do was cry. Around 1 am I was in the middle of my teary pity party for one when a nurse knocked on my door and came in. Usually I am left alone after my evening dose of antibiotics, so I was infuriated I was being interrupted on the one night I decided to lose it. She asked what was wrong and all I could do was fix her with a cold stare and tell her that I was sick of being here, of being caged, of dealing with it all.  She then asked if I could please raise the shade that covers the glass window in my room's door so that the nurses could observe me in the night. Apparently this new order had only been rolled out that morning for all patients.  Her request went down like a lead ballon. I swear I heard a thud. In between cries and sniffles I rudely informed her that I would not put my blind up because I didn't want people ogling me while I slept... if I should actually ever be able to get to sleep, that is. I  almost never defy medical staff or act rude, but last night I was determined to stand my ground.  I wasn't about to give up the thin shade that protected what little privacy I felt I had left. Knowing it was a battle she would not win, the nurse left. Like my dad always says, there is no arguing with a crazy person.

Unsurprisingly, I was grumpy when I woke this morning.  A trainee nurse, or nurse who doesn't usually work here (am not sure which she was), woke me from my sleep to ask if I had taken my morning meds. I pictured myself jumping up and slapping her for asking me such a question. I can swallow 20 pills in one go, but I have not yet mastered the art of taking my meds while I sleep.  I think I gave her a "really?" look but she didn't notice. She then asked if I had taken my Creon (a medication I only take AFTER I eat) even though she was looking at my untouched breakfast tray. I explained Creon to her and then, with the last bit of restraint I could muster, informed her that I was not feeling myself and for her own safety she should exit my room immediately and not bother me again. She did as she was told but came back in a bit later to ask me the same silly question. I stared at my still untouched food and told her that I had taken my creon.  I shook my head in disbelief as she scribbled on my drug chart and left.

That was 15 hours ago and though I am feeling a little bit better knowing I may get to go home tomorrow, part of me, Evil Ashley, still lurks, still feels like a rat in a cage.  I can see that bad part of me and she is a rat running on a rodent wheel that goes round and round endlessly but goes nowhere. But I am pushing and fighting for Sane Ashley to step up, take control back. And when that part of me, Sane Ashley, shows up she will stop the other half of me running in circles and set me free. I just hope she gets here quick so no one gets hurt in the meantime.

"Attention! This vehicle is under attack. Call 999!"

Yesterday afternoon I was milling about my hospital room when I heard a siren and then an automated voice announce "Attention! This vehicle is under attack. Call 999!" The siren and announcement repeated about five more times over the course of two minutes. Curious, I went to the window to see what was happening. I mean, it must be pretty serious for a vehicle to claim its being "attacked." So I stuck my head out the window and looked for vehicle and attacker. I wasn't sure what I was looking for, but I expected a man with a rocket launcher and half blown away car, at the very least. What did I see when I looked out the window? Nothing. I wasn't able to see the shrieking vehicle, and by the way people were going on about their business, I assume there wasn't a man with a rocket launcher trying to do battle with someone's Merc or Porsche. In fact, from what I could see, no one stopped or even thought about pulling out their phones to call 999 as the car kept instructing them to do. Thus, my suspicions grew and I began to suspect that somewhere, just out of my line of sight, a fancy, overpriced performance car had been shat on by a giant bird and was now squawking about it.

Initially I found this incident entertaining as it made me think about just how useless car alarms are. It seems to me that the louder and more annoying and demanding a car alarm is, the more people ignore it, especially when the vehicle's alarm is claiming to be under attack in broad daylight on a busy street in the Beverly Hills like area of London.

And then I found the whole thing to be annoying. The car was parked near two major hospitals and the last thing patients (including me) inside those hospitals  needed was to be bothered by a car making a hoo ha over some bird poo... But little did I know that my opinion was soon about to change again, and shortly I would be wishing that I had an alarm of my own to scream bloody murder.

My line stopped working and leaked everywhere towards the end of my afternoon dose, so the nurse removed it. Then around 7 pm a doctor arrived to put in a new one. Try after try the poor doctor was not having any luck and commented that I had veins rivaling a cancer patient and referred to me as Crap Veins. I had to laugh and informed him that I had already named myself Patient Crap Veins on on this blog a week earlier.  He then said how I must have a high pain threshold for putting up with all of the sticks and this got me thinking.

Somewhere around stick number six I started to wonder if I was doing myself a disservice by remaining calm stick after stick. Perhaps I was making the doctors feel too comfortable and they weren't feeling pressured enough to get it right the first time.... or second, or third, or fourth time. Then it hit me that I needed an alarm! The alarm could announce, "Attention! This girl is under attack. You with the needle, step away from the patient and call an extra talented,  super professional IV puter-iner!" Anyone know where I can get one of these?

Well, needles to say, last night I was not saved by an alarm demanding an extra professional IV puter-iner, but I was saved by an alarm of another sort - the doc's beeper. It went off after stick number seven so the doctor  left to deal with the problem. Eventually another doctor arrived and got me on his second try, or stick number nine for me.

No rest for the sicked

Most people think you go into hospital to rest up, this is a widely held misconception. The worst place in the world to rest is a hospital. Having stayed in many hospitals, I have learned that hospitals give you a bed, but they aren't really meant for sleeping.  Beds are just for looks really. There are war zones and jumping night clubs that are quieter and have less activity going on than your average hospital. And the hospital may fix whatever problem you came in with, but chances are good that you will leave with a sleep deprivation related mental illness or black under eye circles so bad that you could put a panda to shame.

During the day you can't rest because of the endless stream of people coming in and out of your room. Let me give you a rundown of today, Sunday, a 'quiet' day to illustrate this point. My first visitor barges in a little after 7 am to bring fresh water. Then someone came in to ask what I wanted for breakfast. He leaves and then reenters to bring the requested breakfast foods. Then a nurse came into give me my morning round of IVs. Then the breakfast person came back to ask if I wanted coffee or tea. Then a nurse or nursing student came in to do my observations (blood pressure, oxygen levels and temp). Then someone came in to collect my breakfast tray. Then a cleaner came in. After she cleaned the bathroom, she left and then came back in with more gear to clean the room. Then the nurses came in to change my bedding. Then the coffee/tea lady came in to ask if I wanted a late-morning tea. Then lunch arrived. Then the lunch person came back to ask if I wanted coffer or tea. Then the lunch person came back to collect my tray. Then a nurse came in to take my obs again. Then my friends came to visit me, which was good! Then the nurse came in to give me my afternoon IVs. Then someone came in to ask if I wanted tea or coffee and afternoon snack. Then the nurse came back to unhook me from the IV and flush my line. Then a lady came in to bring me more fresh water. The a nice man came in to ask if I wanted a paper. Then the cleaning lady came back to take out the trash. Then someone brought dinner. Then she came to ask if I wanted coffee or tea. Then Alastair came to hang out. Then the lady came back to collect my dinner tray. Then a lady came into do my obs and ask if I had taken my medicines. Then after an hour or so alone with Alastair, the nurse came in to give me my evening IVs. While the nurse was giving me my IVs another nurse came in to ask her a question.  Then around 11 pm, the assault on my room finally ended.

Oh, and because it is a 'quiet' Sunday, I didn't get visits from the doctor, the physio, the CF nurse, the pharmacist, the phlebotomist or dietician.

And what about a nap between all these visits, I hear you ask. Well, sometimes there is a whole period of 5.7 minutes when someone is not coming in and there is possibility of a micro-nap. I would have happily taken a few micro-naps if it weren't for the drilling that has been going on for the last few days. That's right, drilling. I am not talking about a little bit of drilling noise coming from somewhere far away. The drilling was so loud that I kept half expecting a giant drill bit the size of a small care to come busting through my wall at any moment.

And sleeping at night, well, it's no problem as long as I am not bothered, among other things, by the loud beeping that reverberates through the hallway after some sick person hits their nurse call button instead of dragging their sick selves out of bed and tracking down a nurse. Patients today are so selfish. Geez.

I'd write more, but for some reason I am incredibly tired and seem to be developing a nervous tick....

What the *%&^, how did I get back here???

I am now back in hospital and wondering how in the heck I came to be here. Being admitted was not on my agenda for the day! Twelve hours ago I did treatment, took a shower, ate some lunch, kissed Alastair goodbye and said I would see him in a few hours. I had planned on going to the hospital to have my line changed and then thought I might do some shopping for a friend's birthday present.  But instead of a quick line change and a spot of shopping,  I am now in hospital.  How did this happen?, I keep thinking.

I know it has something to do with last night and my line failing before my evening dose and me leaving a message for CF nurse this morning to inform him of the situation. He called me back a little before 1 pm and said if I felt better then I could just be done with IVs, but if I didn't feel better then I would need to come back to get another line and a few more days of drugs. I picked option 2 as I was feeling better... but not better enough.

I saw the doctor from Monday and one minute he was talking about me doing another day or two of drugs and the next he was talking about admitting me. The change in plan was so quick it made me wonder if I had missed a large chunk of the conversation. He and the other doctors felt that I hadn't improved more because I wasn't getting my antibiotics regularly. No point in me running back and forth constantly every time my line failed, he said. Better to be here so that the problem could be rectified immediately, he said. I think I agreed, albeit hesitantly, thinking I would be saved by the bed shortage I am always hearing about. But no, there was a bed. Lucky me.

Before I headed downstairs, Nurse I Like The Big Obvious Vein came to put a line in. He asked where he had put one in the last time, like he wanted to see his past handiwork. I looked down at my bruised and battered arms and wondered if he maybe had a few screws loose, thought about giving him a look that said: Does it matter? You can't use the same place, ya know? Can't you see the bruises? And none of your lines have been great anyway, you silly twit! I didn't give him this look though and just  examined my arms for possible spots instead. He then proceeded to tell me that his aunt, whom he hadn't spoken to in 12 years,  was a lawyer In Vegas, lived in the States for 11 years and had suddenly tracked him down and called today. He went on for awhile, recounted bits of their conversation and then just sort of stopped in the middle and said nothing further on the matter. I thought about telling him that he didn't really have a future in storytelling.

After some silence I eventually piped up and asked him not to put a line in my hand, which he had been eyeing.  He sighed and looked lovingly at the big, blue veins in my hands and told me that I had the world's sexiest (read: thin and no good for lines) veins. He searched around, stuck me in the arm without success. He explained about me bruising easily, like he was telling me something I didn't already know.  And I now have a line in my left hand.

So I am staring at my left hand that has been rendered useless by the IV and looking at my bags that Alastair packed and brought and I haven't unpacked and still wondering how I got here.  Cause when I left the house this afternoon I had an agenda and I am pretty sure the agenda did not include a long weekend away at Chateau Le Hospital.

48-3

Unfortunately, 48-3 was not the score in the USC vs Notre Dame game on Saturday. (USC did actually win, but I would have been happier if we had beat the Fighting Irish by 45 points instead of 7 points. ) 3 is the number of times I will have had to visit the hospital in 48 hours. Granted, my third visit tomorrow morning is a long standing ENT post-surgery follow up appointment.

Perhaps you read last night's post. If so, you might have gathered that I was a little...... well... frustrated. My line stopped working before my afternoon dose yesterday,  so my in laws dropped me and Alastair off at the hospital on our way back into town.  After waiting an hour, Doctor Young And In Charge came in and got a cannula in on her second try. The line flushed beautifully and she said it was in a deep vein, so she was confident that it might last 48 hours.

We left the hospital around 11 pm  and jumped in a cab to get get home. I immediately went to hook up my meds and was surprised when I couldn't get the line to work. After all, it had just been working 30 minutes ago. I used every trick in the book to make the line work but eventually had to admit defeat. Turns out the line had clotted. Not an unheard of problem, but not that common either.  Not after 30 minutes anyway.

I remained composed for a few minutes while I  considered the ridiculousness of it all but then broke down.  I have had lines fail after a half day, but failing after a half hour, you had to be kidding me! And to think we spent almost 20 quid on a taxi to get home quick. Part of me was waiting for a giant animated salt container to jump out and attack me, try to shake some of its contents into my wounds, both physical and mental.

I am pleased to report that the animated salt container never materialized.

But less than 12 hours after leaving the hospital, I was forced to return there again today. Doctor I Have Been Putting Lines In For 5 Years, whom I had not met before, put in a cannula after two failed long line attempts. He was nice enough and with a wink and a smile said he would be sure to tell Dr Young And In Charge that her line hadn't even lasted 48 minutes, much less hours 48 hours.

Frustrated. Surprised.

I am frustrated. I am surprised. I am frustrated that I am frustrated. I am surprised that I am surprised. I am frustrated that I am surprised. I am surprised that I am frustrated.

So very frustrated....

Damn you veins. Damn you!