I'm leaving today
I want to be a part of it
New York, New York
OK, I am not actually leaving for NYC today, but I am leaving first thing in the morning. There has been a lot going on here in Dallas since I arrived and I have been trying to fit in lots of stuff before I leave, which is why I have been silent on the blogging front.
My best bud came over this afternoon and helped me pack and I really enjoyed visiting with her. She neatly folded all my clothes and my bag is so tidy! Usually when I pack it looks like a bomb exploded in my suitcase, so I feel a little sad that I can't take her with me everywhere I go so that this won't be the case anymore.
Anyway, my family is off to a CF fundraising event shortly and I am hoping I get to go. I took some medicine for my stomach earlier but so far it is not having the desired effect but is making me feel like I am gonna talk to Chuck on the big white telephone. Nice. And the event is centered all around tasting the food of different Dallas restaurants, so go figure that today of all days I would feel queasy. I can just picture me trying something and saying, "Oh, this is great!" and then promptly barfing. Because I do, after all, generally have impeccable timing with these things. Fingers crossed this is not the case. But if I did chuck in the middle of the event, at least I would have some really priceless blog material ; )
Well, gonna keep this brief and say goodbye, but I do promise to try and write about my NYC adventures.
Friday, 13 November 2009
Tuesday, 3 November 2009
28 Days Later
28 days ago I entered hospital and began IV antibiotics. 28 days later I am pleased to report that this little episode in my life hopefully has come to an end. It's been a bumpy 28 days, but at least I didn't wake up to find Britain decimated by a virus and full of zombies, unlike the poor chap in that movie. It has been a rough ride mentally and physically, so I am trying to focus on the positives. Thus, I think it is positively great that I am not dead, undead, or surviving in a city filed with the undead. Having said that, between the bruising, the awkward and zombie like way I have been holding my arms out (to protect my IV line), the ashen face, the under eye circles and generally poor demeanor, I think it is safe to say that if I came across the undead, they would likely take me for one of their own.
But enough zombie talk. I am feeling better chest infection wise. However, and very annoyingly, my asthma is now playing up and refusing to give up the ghost. Oh, for those who don't know, I have really nasty asthma on top of CF - a real double whammy! I am not surprised though because my asthma is always terrible when the weather changes and the weather in London has been all over the place as of late. I am like one of those old women who can tell it is gonna rain cause her bones hurt. But instead of achey bones, I get really twitchy airways. I am a walking human barometer! So the docs tripled my normal dose of steroids last week but so far it hasn't helped. Today at my follow up appointment, I told the doc this and because my airways are still feeling so tight, we both agreed that doing a spirometry would be pointless. So he made some changes to my asthma meds and hopefully they will break this cycle soon. And if the meds don't help, then hopefully a change of scenery and weather will.
And it just so happens that I am headed for the States on Thursday, so that's lucky.
Sunday, 1 November 2009
Saturday, 31 October 2009
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.
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.
Friday, 30 October 2009
"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.
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.
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.
Tuesday, 27 October 2009
"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.
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.
Monday, 26 October 2009
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....
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....
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