periwinkleblue.co.uk :: Morphine Breath

Snowcherries from France

Published Wednesday, July 28, 2010 at 14:11

So, um, I’m going to France. On Friday. Surprise!

Horatio’s Dad bought a house out there in 2007. Well, technically, two houses, semi-detached. He’s been knocking them together and adding fancy modern things like toilets and plumbing [okay, maybe not plumbing].

I went on their other family trips to France and it was awesome, but I couldn’t go for the last few years because I was sick. This year though, when they were planning it in March I asked if I could maybe come this time. Unfortunately, the third bedroom wasn’t finished yet, Horatio was still sleeping in the lounge. Then I got sick and it became moot anyway.

So on Sunday when we were talking I asked about the trip a little more and Horatio said he was excited because he had his own room finally. I had to ask if that meant I could technically come too then. He thought about it and we chatted some more then he hung up to call his Dad.

Dad said yes. Suddenly, ferry and hotel reservations were updated, a flight home for me was booked and I found some travel insurance. I’ll be leaving a few days before everyone else, thus the flight home.

I’ve spent the last few days planning my packing. The plan is for me to take one carry-on bag home and Horatio will take everything else home with him. Then when I go to see him again [20-24 August; planned before this trip] I’ll collect my things and take them home.

I’ve written my parents so they don’t get a shock on Friday, I told my sister yesterday, I arranged for someone else to unlock the library for the book club meeting I’ll be missing and I’ve got my prescriptions collected so I can take extra steroids with me in case anything goes wrong.

Very exciting, but very fast!

They haven’t seen me since I got sick and I’m nervous about that. Will they understand when I sleep until 10 and still act like I’m exhausted? Will they be cool with my erratic eating schedule? My unwillingness to wear my hearing aids after a while making them shout to be heard? I know logically that it’ll all be fine, but the reality it an unknown and it is giving me pause [paws!].

It doesn’t really matter what they think anyway, I’m going to be with Horatio and getting nearly two weeks with him will be wonderful.

 
« Get my feet back on the ground

Get my feet back on the ground

Published Saturday, July 24, 2010 at 17:42

I’ve been trying to write something for 12 days. I start and get two sentences in and then nothing. Things have started improving and I ought to be recording that.

I haven’t really written since my dilation on 1st July. I’m still recovering from that. I saw lung doctor on 19th and he put my steroids back up to 10mg for three days since he said my lungs sounded inflamed. This did not help my insomnia. I feel so out of it and sluggish.

On the 9th Doodle came over as usual for Friday night pizza and bad movie. He had his newspaper and there was an advert in there for a Tori show on the 18th in London. I hadn’t heard anything about it. I did some digging and managed to get us tickets. I later found out I missed it because it was announced on 13th May [when my parents were here and we were all in Cornwall]. I’m so pleased we got to go, it was an incredible show.

She was playing solo. I haven’t seen her solo since 1996. This was my 10th show. She opened with Bells for Her, this is me and BlanketGirl’s song. I cried. She played Yes, Anastasia, Weasel’s preference. She played Take to the Sky, Doodle’s favourite. She played Spacedog, my song; why I fell in love with her. She finished with a cover of Depeche Mode’s Personal Jesus, the song that made me fell in love with them. She gave the most moving performance of Me and a Gun I’ve ever had the privilege of hearing. The only way the show could have been better was if she’d played for six more hours or if she’d played Cooling.

Monday morning after the show, I woke up at 10 [even though I am not falling asleep before 2am these days I still make myself get up at 10] and my computer needed re-starting. Then the registry was corrupted again and needed fixing. I finally got it sorted at 10:45. Just to have my calendar load up and remind me that I had had a doctor appointment at 10. I called in a panic. They told me I could still come [phew!] and I called a taxi. Got there and waited. Finally saw him at 12:30, did a breathing test [very uncomfortable]. We talked at length about my trachea. He measured it on the CT scan, my wider parts were 16x13mm my narrower parts were 13x7mm. No wonder I couldn’t breathe. These were not the widest/narrowest bits, just something to give me an idea of what happened.

I walked home! It was the longest walk I’d done since the op. I loved it. I put some food in the oven for me and settled in. Only for Weasel to remind me that I wanted to play Scrabble at 2 [found out about the group from a lady in my book club]. I thought for a moment, turned the oven off, got a bowl of cereal and headed out. It turned out to the be the single strangest Scrabble experience of my life.

My family and I have always had a informal ban on two and three letter words [they're okay if you're desperate or playing your last tile]. They’re hard to build off of and frankly, we can do better. We use the dictionary to look up words and learn their meaning and even discuss their entomology. In short, we love words and learning.

This group have Scrabble dictionaries. There are no definitions, just lists of words and variations. The only allowable words must appear in this book. They also allow/encourage two and three letter words. They handed me a sheet of these words to save time. One of the first words down was ‘Ef’ and I asked what it was, told that it how the letter ‘f’ is spelt. Later, ‘ref’ showed up, I pointed out that it was an abbreviation, they said it was on the list so it was fine. I looked through the list then and asked about ‘Ufo’ I said it was an acronym, they said it was on the list. I had ‘pootle’ and they wouldn’t let me have it because it wasn’t in the book, even though we all knew it.

They also prefer not so much crossword layouts, but stacks. For example:

  S
PEE
INN
PEA
  T
  E

I’m ashamed to say that I put the middle ‘e’s in and I have no idea what a ‘ene’ means. Internet has it as an acronym and an abbreviation. Gah. They are high scoring, but hardly a challenge. My current plan is to keep going and maybe ask my playing partner if we could play with official rules.

Otherwise, I’ve been watching a hell of a lot of The Young and the Restless. My sister started watching several months ago [her friend got her into it] and she kept telling me about the plots and it sounded so fantastic. Turns out one can watch on YouTube. So I asked her when to start watching [end of March] from, I’m now in May somewhere. It is hilarious and completely over the top. I love it. Their legal and medical systems are completely unrealistic, they don’t even try. The characters are over-dramatic and over-the-top.

Been cooking a bit again too. Love it. I’ve made perfect Macaroni & Cheese, refried beans, guacamole and omelettes. I love being able to stand up and walk around again.

I called last week to ask my therapist if I could start again. I e-mailed my BSL teacher to ask if I could start again. I’m going to start singing here and get my lessons going again.

Weasel’s medical problems may be solved. She’s had a lot of pain in various joints and finally got to see a rhemetolgist yesterday. She has flat feet. That has been causing all of her ankle, knee and hip [and probably back] pain. She has mild carpal tunnel syndrome in one wrist and she just needs to not lean on her other elbow. I’m so relieved. There are a lot of really simple things we can do to fix all of this – non-medication things.

Oh, one final thing I’ve been doing: LEGO. Last Saturday we went to see Stoat and Mal. It started raining so Weasel decided to get in the loft and sort it a bit. We have a fine stack of books, a puzzle and two big boxes of assorted Lego. I’ve been sorting through the pieces and locking the same ones together. Once we know what we have we’ll be able to look into selling them. Meanwhile, I’m totally playing with them. So very cool.

 
« Stay standing still Snowcherries from France »

Stay standing still

Published Sunday, July 4, 2010 at 22:59

I wish that you could see what I can see.

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« Just want to be a woman Get my feet back on the ground »

Just want to be a woman

Published Saturday, July 3, 2010 at 18:59

I had my dilation on Thursday, it went well. Turns out the right intermediate bronchi wasn’t as closed off as originally thought [CT scan had it at 1mm]. The surgeon said it needed a little work, but the main problem was in my trachea below my voice box. That’s been lasered and treated with anti-scar-tissue-spray [as I like to call it]. I get to go back again in four months.

This one has hurt more than previous goes. In terms of my throat and my neck/shoulder muscles. I feel a bit beaten up. The first night home I had a 3:30am coughing/vomiting/peeing adventure that totally rocked. I didn’t dare lay down last night because I was so nervous of vomiting again.

I’m not really wanting to eat, but I’m hungry so I dither and feel blah.

Everyone on day surgery team and operation team were awesome. Kind of frustrated with the ward nurses though. I can appreciate that they’re short staffed and under pressure. Start at the beginning.

I checked into the day surgery unit. They re-arranged the patient list to put me first so I could go home same day. I’m supposed to come back to day surgery to recover then head home. I leave my bag there and off we* go. I’m under by 11am.

I wake up in recovery at noon. I’m supposed to be a humidified oxygen, turns out the day unit doesn’t have that so I have to go to a ward. There are no beds in the ward but two people are due to be discharged.

13:30 I get to go up to the ward. My humidified oxygen isn’t there nor is my bag. I ask for both told the former should be 15 minutes and the latter the porter is just getting. I fall asleep.

16:00 I wake up, neither my humidifier or my bag have appeared. I ask again and the nurse seems annoyed. I offer to get my bag myself, it is just downstairs. They won’t let me and they insist I stay on the regular dry oxygen even though I don’t need it. Then there was the whole won’t take out the needle thingy they put in to inject the anaesthetic and they won’t cut off one of my identify bracelet things [one on my wrist and one on my leg, I ask for the leg one to come off].

Finally, at 17:00, I ask the nurse if there is a phone I could use. I need to call Doodle and let him know I may not be going home today after all. When I tell her an acceptable alternative would be if someone could bring me my bag; it somehow magically appears. I make a call to Doodle and to Weasel.

Doodle comes up and hangs out with me. A doctor shows up about 18:00 and suddenly things start happening. The surgeon shows up and says what happened and he decides since I live so close I can go home after all. I wait for my discharge papers. Doodle calls a taxi and we leave at 19:00. Twelve hours in the hospital all told. Not bad.

Thankfully, I was not without Fergus for all of this. When I was being checked in I said that Fergus was the only thing that was irreplaceable and they asked if I’d like to take him in with me. I didn’t even know this was possible! So they got him a little bracelet, put a sticker with my details and wrote his name and I put it on his collar. Having him when I woke up in recovery was wonderful. They also let me take my hearing aids.

When I woke up I couldn’t talk so I signed to ask if anyone knew BSL. Sadly, no one did. But Chris immediately got a bit of paper and a pen so I could ask my questions. Once I was able to have something to drink I could talk better.

* We was a nice man named Chris who opened with the usual question about my accent. I said American and said he had a Spanish accent, so Spain or Latin America? He is from the Philippines. I had no idea they spoke Spanish there. The other nurse from Asian decent with us said something about her name being from somewhere [I missed the place] and I joked, “O’Malley”? Her married name of course. But it gave us a giggle.

In fact, the recovery doctors and nurses were just awesome. Since I was there for so long I got to do some prime people watching. Chris was there in recovery and met two new nurses, Trix and Caroline. They’re really good people.

Chris and Caroline both came up to the ward later to check I was okay. How awesome is that? I tried to see if I could find an address to send a thank you card to, but no luck yet.

I feel bad that the nurses are stretched so thin. I feel bad asking for things I need, but if not them who? I really wish they’d put a ward porter or similar in place. When I need more water, I hate bothering a nurse.

Ah well, I had mild frustration, but otherwise exceptional [as usual] care. Just would prefer not to feel guilty.

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« Beautiful boys Stay standing still »

Beautiful boys

Published Wednesday, June 23, 2010 at 15:01

I’m sleeping soundly. I’m having a dream that one of my childhood friends is mad at me because I didn’t help carry the spices from the shop. I wasn’t helping because I was brushing my teeth.

Cough.

Cough, cough, cough, cough, cough.

I sit up, sleeping mask still in place, hoping this one will pass quickly; maybe I’ll get to go back to sleep.

No such luck, I’ve started peeing a little with each cough.

Resigned, I take off my mask, collect my water glass and hearing aid from the bedside table. Fergus rides as usual under my left arm. I set the lot down on the bannister before heading to the toilet.

Downstairs, I give my leftover water to the plants. I refill the glass and take my vitamins. Moving to the lounge I take the pills from my neon green pill case. I count before I take them: three yellow, three small white and two oval white.

I finished the last antibiotic yesterday, but I still look for the pack. I use my nose ointment [preventing infection!] and my ear drops [they don't seem to be helping].

I am the future. I no longer need food, I survive on my pills. I’ll just get my padded space suit.

 
« When I’m really, really bad Just want to be a woman »

When I’m really, really bad

Published Thursday, June 17, 2010 at 22:36

Today I’ve mostly been drinking water and peeing.

This is a change up from the coughing and peeing I was doing before.

Well, still coughing, just not as much. Not moving has helped.

I also bought tickets for Weasel, Doodle and I to see Linkin Park in November. So excited. This is on top of seeing Roger Waters next May [with Stoat too!] and Imogen Heap also in November. Here’s hoping I’ll be well enough to go.

I went to see a GP because I was still coughing up a little blood and I’ve been feverish and I thought I might have an ear infection. She’s put me on more antibiotics, put a call into chest people to encourage them to schedule my dilation and assured me I do not have an ear infection but some drops would help calm it down.

Saw the dentist the day after that and got a bit of my permanent retainer smoothed over. It’s been bothering me for ages, finally remembered to tell someone about it. Also I have good dental hygiene and I don’t have to go back again for a year.

I’ve been watching a few movies [Water Lilies, Romancing the Stone and Incident in a Small Town]. Weasel and I have also finally started watching Buffy the Vampire Slayer only 13 years too late.

My therapist has decided that I should focus on getting better and I’ll get in touch again when I’m healthier. So now I’ve got her, voice lessons and sign language lessons that are on hiatus. I’ve also had to cancel a meeting for hard of hearing people I was hoping to go to this weekend. Staying home instead.

Horatio took me up to his house last weekend. He had his stepmum’s car and came over Thrusday night. Where Doodle, Weasel, Horatio and I had yummy pizza and watched New Moon. It wasn’t as bad as I expected it to be. I love the books, but the first film sucked. Badly. We thought of having a drinking game. They ironed out a few things and it wasn’t as dire.

Friday Horatio drove us to his house. We played a lot of Magic Orbz on the PS3, talked a lot, ate a lot and generally relaxed. A couple of friends came over [we'll call them Gabe and Carlie] on Sunday. Carlie is from Mexico and she always makes us gorgeous food. She says she likes cooking for me because I appreciate it. This time we had taquitos. Horatio and I made chocolate cookie cheese cake bars for dessert.

We ate at the OK Diner on the way there and back. I officially really love caramel milkshakes. They also had curly fries. Yum!

There’s been a car parked around the corner from my house for over a month. It has a flat tyre. When Weasel pushed me by it last week I got her to take a photo of it so I could reported it abandoned. I got the photo today and made the report. Very exciting. The council will put a bill on it telling the car owner to contact them within a fortnight and if owner doesn’t council takes it away.

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