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Sunday 27 January, 2008    I’m not listening   
          Filed under: Debbie  — Ezekiel @ 13:32

What a fun few days. Yesterday morning my site was working great, yesterday afternoon my theme stopped working. I tried a few things to no avail. Today I deleted WordPress and re-installed thankfully it all came back. I have been browsing for a new theme for about a week and I am actually going to make my own. So we’re going to keep the original blue curves theme without my tweaks here until I unveil the new version.

My legs. Oh lordy my legs. Something has gone horribly wrong somewhere. I’m on morphine all the time as you know but I’m still getting so much pain from my legs. It is definitely muscles and not bone [thank god] and it comes and goes with no bearing on anything. Walking or stretching makes no difference. Rubbing helps, but only if Weasel does it [I just seem to make it worse when I try]. It means I can’t walk sometimes and when I do it is very difficult. Standing is also fun, so if I have to brush my teeth or douche I end up sort of dancing as I do it trying to find a position that doesn’t make me want to kill myself.

I’ve been wearing flight socks for the last four or so days and they seem to help, but I worry about wearing them constantly, am I going to do more harm than good? Seeing GP on Monday so going to talk about this and variety of other fun topics!

I wrote this two nights ago…  
I’m very tired. I want to go to bed. But. I know that when I get to bed, I’ll lie down then cough. Cough some more. Cough more. My eyes will water. My head will pound. 20 minutes later I’ll get to listen to my Weasel’s even breathing as she starts her first dream of the night. An hour after that my first drug alarm will go off. 1.5 hours after that I’ll need to go to the bathroom. Another hour brings another drug alarm. I’ll cough some more. I might not be able to breathe and I’ll have to go have a 2am douche. I’ll try to sleep, while my legs throb. I’ll bite my cheek again. Sip of water. 1.5 hours later I’ll need to pee again.

Going to bed is exhausting. I never feel rested in the morning.

Random things that have occurred to me in recent days…  
Why hasn’t anyone made a RomCom called Rules of Engagement ? Ho ho.

Damn but dijonnaise is gooooood. Try it with chips [aka fries].

The phrase “I’ll e-mail you.” bothers me because it can imply that the person will be somehow attached to the message and sent. I know logically that it is correct, but it can be read both ways.

Ending on a happy note - my sister has set-up her own journal ! Go read and be impressed, she’s an amazing person.

Comments (2) 

-->  Tuesday 22 January, 2008 
  Head off the path   
          Filed under: Debbie  — Ezekiel @ 12:21

The last few days have totally kicked my ass. I’ve been soooo very tired. I’m not sure if it is because of the hospital visit, the drugs I received at said hospital, the fact that I can’t seem to stay asleep for longer than 1.5 hours or if it is something else all together - or a combination of all of the above.

My legs are still aching, I’ve eased up on the walking, I only went around the block yesterday and will probably do the same again today. I’ve added some gentle stretches to try and help. I’ve looked up the side effects of my newest drug and it isn’t one, so I’m assuming it is just getting my legs working again after such a long time off.

My hearing is bad again, poor Weasel has had to start shouting at me again and I had a stupid melt-down at her because I get so sick of saying what all the time. I have a hard time on the phone too, so I’m sad because today I should get to talk to my sister. I’m hoping I’ll get lucky and I’ll be able to hear her okay. If not, we’ve found that she and Weasel get on like a house on fire so I can live through them.

Doodle came over last night for the first time in months. It was so nice to see him. He was a regular fixture on Friday nights for years for band practice, junk food and bonding. We watched four episodes of South Park  that we’d missed because of my illness. We ate delicious pizza and he and Weasel got to play some beautiful music together. We also got to reassure ourselves that we’re not crazy. Stoat has an idea for a website that keeps changing every time we talk to him about it. The last version I knew about, I realised yesterday would be a waste of time and money and would result in a lot of grumpiness. I said as much to Doodle and he was able to confirm that he had reached the same conclusion. So the plan is to have a long talk,write ideas down  and then see how we can move forward - all of this happens the next time I’m well enough to go to their house. Who knows when that will be though.

I get to see Horatio!! Weasel is going to see her friend [so want to spill on this, but respect for Weasel makes me hold back] on the 9th of February so Horatio is being so very sweet and coming down for the day on the train. It is like six hours of travel, but it’ll be so worth it. This has been so hard because I haven’t been able to talk or hear so the phone has been severely limited, the computer is a bit hit and miss for me too so sometimes it’ll be two weeks between talking. Thankfully he is a patient type and has been so kind during all of this. I’m just excited to be excited to see him - I haven’t been well enough to be properly excited until now.

I have a lot of notes and e-mails I should write and I haven’t. I just have a hard time getting started. The first thing I had to do was get a summary of my illness up somewhere - which I have. I also wanted a copy that wasn’t on my website so I could share it with my family and some friends - now that’s in place too here: http://homepages.nildram.co.uk/~spacedog . Now I just have to write the notes to go with it. This weekend was just hard for me I think. I’m hoping I’ll perk up as the week goes by.

One very good thing - I finished the oral antibiotics finally! One of them I had to take twice a day and I wasn’t allowed to have diary products at the same time. No problem in the morning, I skipped my yoghurt and Yakult and had soya milk instead. Dinner though pretty much always involved cheese. Weasel and I love cheese. So if we were late having dinner, I’d have to set alarms in the night to take the second one at 11 or similar. I’m just so glad to be free to have dairy any time! I have to find any good I can in my life at the moment.

My parents gave me a £40 Amazon gift certificate for Christmas and lordy I am spoilt for choice. I have a wish list  that is fairly up-to-date, but there are so many things I could get that I hadn’t thought of - like Nintendo DS games. I’ve never browsed any of them before. Thankfully I have a year to settle on something.

I wish I had more to say, but I’ve just been feeling under the weather and tired - nothing has really happened.

Comments (2) 

-->  Saturday 19 January, 2008 
  Like sisters   
          Filed under: Debbie  — Ezekiel @ 15:34

Hospital yesterday took seven hours. We got there at 9:15 [traffic delayed us], had some blood tests, wandered around the hospital until 10:30. Sat around, had the saline solution put in [three hours], waited some more, had the cyclophosphamide [40 minutes] then another 10 minute bag of saline. We got home just after 4.

The whole thing was surprisingly tiring for me. Sitting around reading, playing on the DS, talking with Weasel… E was at the hospital getting some tests done too and she was able to come see me for 30 minutes or so around lunch. We realised we hadn’t seen each other since August. They still don’t know what’s wrong with her, I feel so bad. At least I know what’s wrong with me and I have some of the best doctors in the country for it treating me. It was so nice to see her though, I have felt so isolated and seeing a familiar face and getting to talk over all the things that have happened was so good.

I just wish I didn’t find it all so exhausting.

My legs hurt again in the night and they kept on into today so I’m taking it very easy. Had my shower, did all my drugs of d00m and then moved very little. So far I’ve watched an episode of The Brady Bunch ,Medium  and a film with Weasel over lunch -Strictly Ballroom . We watchedSingin’ in the Rain  last night - oh my god it is bad. Bad in a very camp way. We both thought it would be excellent if you watched it high. It was definitely worth seeing once but I doubt I’d seek it out again [not unlike2001 A Space Odyssey ].

Weasel and I also took some time to review our last few bank statements and our budget today. We’re doing surprisingly well. If we stick to necessities only and we actually have over £500 that could be saved each month - even without my income. I think we were both taken aback by this. We’re also looking into apply for incapacity benefit for me so we don’t end up in any scary situations. I tried to do it myself, but I’m really not having the best day brain-wise, so I’ve handed the link to Weasel and hopefully we’ll get it sorted soon. I’m only getting half pay this month and then I won’t be paid until I’m back at work.

I’m putting loads of things [books, manga, DVDs, videos] up on Amazon’s Marketplace too to try and get some extra pennies in. Once I have them up I’ll link here if anyone is interested.

I keep thinking with my pain under control I ought to be able to at least think about work, but then I have days like today. All I did was sit at the hospital yesterday, no major brain activity, no physical exertion - just sitting. At work I’d sit too, but I’d have to use my brain a whole lot [which is still hard for me] and then I realise that work is still just beyond me. The fantasy is a nice thought though so I suspect I’ll keep on with it.

Oldest had a medical nightmare last year and it hasn’t gone away. She’s managed to find a doctor who is willing to help [finally!!] and is preparing for surgery on the 3rd of March. Please add her to your thoughts and prayers when you think to. This has all been really hard on her and her family [and on me!]. We would very much like our health and happiness back please.

Comments (1) 

-->  Thursday 17 January, 2008 
  Rain Shadow   
          Filed under: Debbie  — Ezekiel @ 17:17

You’ll notice a new link there on the right. I’m tracking my illness and I finally have somewhere I can point people to when I want to say what’s been happening. Sweet.

Last night I had a coughing fit. I left the room so I wouldn’t bother Weasel as much. I got into the hallway and my god my legs hurt . My brain immediately started cycling through all the medications I’m on and trying to figure out what could have caused this side effect. Once the fit was over I went back to bed tried my best to just ignore my legs. Today when I got up, they felt fine. Phew! Then I went for my walk around 12:30. Half way through my legs started hurting again. I did 30 minutes today and yesterday it was 20 maybe 25 minutes. So the pain? It was me using my muscles in ways they were no longer accustomed to. I’m relieved and pleased, I like that I can walk that long and at a pretty good pace. My breathing is still difficult, but I can do it. I was pretty tired when I got home, but lunch and sitting on the sofa seems to have fixed me.

I watched the first episode of the first season ofMedium . WOW. This is going to be an awesome show and Oldest was totally right, it is a good example of a healthy marriage on TV! Weasel’s friends recommendedNCIS  to her and her friend Nick went and gave her the first season box for her birthday. She’s been watching it on her own so I only saw the first two eps last night. Good stuff. I think it’ll get better as the character development continues and they figure out how they work best together. The plots are good so I’m excited to see how it turns out. I like having new things to watch.

Horatio today suggested needlepoint to me as something to do. I totally never thought of it. I love doing it, but I haven’t had time in recent years. I have a pattern that I got from Weasel’s Nan like four years ago with kittens so I got it out today. I’ll get started later on I hope. I still have one puzzle left to do and there’s all sorts of movies I can watch. I’m definitely not bored.

It has been very gloomy outside today. It just started raining and when I went to the door to see it all properly [I love love love rain] it had bits of snow in it!!! How exciting. We haven’t had any snow this year so it’d be fun to have a little bit. It never sticks around, but it sure is pretty when it falls. Thankfully it wasn’t raining on my walk earlier.

I watched half ofMusic & Lyrics  yesterday and half today. I have their song in my head now. Grr. It isn’t a bad song, but it isn’t my usual ilk at all. I was actually rather pleased by this film, I kept waiting for one or both of them to fuck up the relationship and it just didn’t happen. They totally just got on with it and had a cute little how we met story to tell at the end. My predication was that our male lead would get caught kissing/shagging the pop star. So I’m glad that didn’t happen. Yay for RomComs.

Did I mention that as of the 7th of January Weasel and I have known each other for 10 years? At the tail end of 1997, I e-mailed her and asked to write for my site. She replied on the 7th. So officially we knew each other existed. We fell in love over the next five months and … love love love being in love with this woman. Best thing I ever did.

Speaking of Weasel, she had team meetings yesterday and today. I got to iron her two nice shirts and with her new haircut she was looking fabulous. She cleans up good. She came home yesterday pleased as punch because this whole being awake thing is knocking on into work and she is performing really well and making herself look all kinds of shiny. It also means that today, she’s gone to the meeting, plans to cycle out to my office to collect some paperwork we need to claim benefits with, she’s going to nip to a shop on the way home and finally tonight is going out to a meeting to protest a proposed Tesco. I’m so excited that she has the energy to do all of this. I’m sure she loves it even more. These last couple of weeks with her being so on the ball have just been heaven. I never want it to end. I’m so so so proud.

Comments (1) 

-->  Wednesday 16 January, 2008 
  Education   
          Filed under: Debbie  — Ezekiel @ 18:53

Yesterday, I finally looked up information on Wegener’s Granulomatosis [WG]. Even though my diagnosis came through in October, I was so anxious and ill that I just couldn’t do my own reading. I relied on Weasel to look it up and arm herself and pass the best information on to me.

So yesterday for the first time, I saw lists of symptoms, treatments and statistics… it wasn’t new  information per se, more that it made what I knew more real. Things like only 8.5 people per 1 million actually get WG - rare. That is it like cancer in that our end goal is remission - there is no cure. There’s a 40% chance I will relapse and I can see myself getting very scared every time I get a cold.

Being haunted by an illness is nothing new to me though. I had depression when I was a teenager, so every time I felt a bit blue I was scared it was back again. It came back in 2004 and again in 2007. I also have experience with a disease that lurks invisibly: polycyclic ovarian syndrome [PCOS].

I’m very fortunate in that my local hospital is a teaching hospital and held in very high regard so I really am getting the best possible care. People come from all over the UK to come to my hospital that’s 10 minutes down the road. I’m also very lucky in that my kidneys have thus far been unaffected.

I’m coping with all of this better because I finally feel that my anxiety is under control. The antidepressants are doing what they’re supposed to. My current plan is to keep on with the beta-blockers until I see my GP on the 28th. Then I’ll discuss with him the possibility of reducing or stopping them. It used to be that I could feel the beta-blocker wearing off. My pulse would start going all hard and fast and I’d feel all stressed etc. I’d try deep breathing or stretches and nothing would help. Now though, I don’t feel the drug wearing off and if my pulse does speed up I can take a few deep breathes and it calms down. Bliss.

When the background morphine pills were upped to 45mg twice a day I was supposed to be able to reduce the amount of liquid I had to have. This hasn’t been the case - I was still having 10ml every three hours. So on yesterday I had Weasel call the doctor and I’m now on 60mg twice a day. I’ve felt so much better today, I’ve managed to go almost 3.5 hours between one dose and another. I’m going to see about doing 3:15 overnight tonight and see how I feel tomorrow.

Friday is my next dose of cyclophosphamide - my new treatment replacing the methotrexate. The whole process will take 4-5 hours. They start with a blood test then we have to wait for the results before they can proceed. Then there are anti-nausea drugs and this drug… it means a lot of sitting around. Thankfully Weasel is able to go with me. We’ll take books, MP3 players, the DS and hopefully the time will fly by. I’m trying not to be nervous about it.

Comments (1) 

-->  Monday 14 January, 2008 
  Fire Action   
          Filed under: Debbie  — Ezekiel @ 15:55

Weasel has made a small change that has knocked into every aspect of our lives and has made me fall more in love with her than ever before. I cannot believe that there’s still room in my heart for me to fall in love with her more.

The change? She has started coming to bed with me around 11pm.

I fall asleep quicker, I worry less, I don’t wonder where she is or what she’s doing [i.e. falling asleep in her computer chair and hurting her neck]. The sleep is more satisfying because she’s a comforting, warm and consistent presence by my side.

In the morning she gets up with her alarm and does productive things like the dishes. Her eyes aren’t blood shot, she’s singing more, laughing more. Working better at work. She has more fun with the fun things and feels better about the responsibilities because they’re getting done and she’s doing them well.

I’m so proud of her for making this change. I’m so happy seeing the effects as they roll through our lives. I’m so excited to see where this takes her now that she’s living in the moment.

Remember a few weeks ago I was happy because I’d finally upgraded WordPress? A week after that they released another update. My version was then new enough that it kept telling me that my version was out of date. So I finally upgraded today. Unfortunately, I fucked it up a bit and ended up spending half an hour trying various things. It was a stupid mistake and it wouldn’t have happened if I’d been paying proper attention. Thankfully I back everything up so it wasn’t a big deal.

I haven’t been back to Budgens since I went the other week. I actually felt really tired over the weekend. I suspect I was running on adrenaline last week with all the injections and stress. So I’ve been taking it easy and trying to do what I can when I can and not beating myself up over anything.

I’ve e-mailed E today to re-issue my telephone/visit invitation. We’ll see if she responds.

Re: the last title ‘Do not be concerned’. The lift in the hospital had the usual in-case-of-emergency/power loss sign up and the first line in bold caps was ‘do not be concerned’. This amused us for some reason, me because it is so very British and I love it when they do that. Additionally, there were signs all over titled ‘Fire Action’ - the action to take in case of a fire obviously, but I immediately thought more along the lines of superpowers. I took Fergus to every injection because he totally makes hospitals less scary. So I’d aim Fergus at Weasel and say ‘FIRE ACTION!’ and she’s mock scream and cower. Made every walk in and out of the clinic an adventure.

Weasel and I have made the decision to cancel our gym memberships. We froze the memberships back in September, so instead of £99 per month it was £20. But when one income goes and there’s no visible back-to-the-gym moment on the horizon we decided that those £20 could be better used on things like food. It has sort of made the recovery road that much more real to me. There is no end in sight, I have to wait and see what happens with the new treatment and then it’ll take me at least two months to get re-established in my work routine. Then I’ll want to get my home routine back, then my counselling coursework. I think before we re-new the gym we’ll look into setting up something at home by buying a rower, a pedometer and some weights. I have a bike already and overall it’ll probably work out cheaper and Weasel will be more likely to exercise too.

The morphine every three hours has meant that I can function again, and being without constant pain has been really awesome.

I’ll end with some amusement… Weasel has stomach issues which means that she sleeps better at an angle. With all my head crap I’ve had to join her. I used to call her five pillow pile her mountain, mine is now bigger with seven pillows and my duvet. So here is our sleeping mountain with Fergus playing me on the left and Corrin playing Weasel on the right.

And to give you an idea of how tall my pillows are…

Comments (4) 

-->  Friday 11 January, 2008 
  Do not be concerned   
          Filed under: Debbie  — Ezekiel @ 13:25

When I first started the morphine I was happy because it didn’t have a taste. I’ve since realised that it wasn’t the morphine that didn’t taste, but rather I couldn’t taste anything. It actually tastes like burnt sugar and has an interesting after taste. Getting your sense of taste/smell back after losing it is very awesome.

I thought you might enjoy this:

These are the pills I’m taking every morning at the moment. I take seven more in the evening. I’m such a druggie.

I finish with the antibiotic injections today! I had my nice tube thingy removed last night so had a nice night being tube free, they fit a new one this morning sort of close to my knuckle so I’m having issues with it. Only have to have it in today though so no problem here! I’ll get it removed after the injection this evening and I’m free!

Now that my pain management is under control and the antibiotics are working [we hope!] I’ve actually been feeling pretty good physically. This opens the door to feel not so good mentally though. I’m feeling pretty bitter and grumpy these days. I’m trying hard to fight it, but I have no patience or sympathy… I’m hoping I’ll figure it out soon enough and get back on an even keel. I’m also hoping to reduce the amount of morphine I’m taking over the weekend.

Things I’ve been thinking about that have nothing to do with my illness:

TV Marriages  
I was watching Brothers & Sisters  the other day and I got to watch the last marriage fall apart. There were three successful marriages when the show started: the first fell apart in the first ep, the second failed at the end of season one and now the last has succumbed.

Contrast this withThe Brady Bunch  which I’ve also been watching. I was struck by how Mike & Carol are a genuine partnership. They love each other, treat each other respect and understanding. They talk to each other and work together so their relationship and family can be a success.

Then I tried to think of comparable successful relationships on TV today. Homer & Marge are the closest I could think of in main character terms. I brought the topic to Weasel and she thought of Turk & Carla fromScrubs  but they’re more secondary characters. I was cool with Monica & Chandler fromFriends  but they’re not on TV anymore.

I don’t watchEverybody Loves Raymond , but from what I understand they’re mean to each other and have very sarky conversations and misunderstandings. Sort ofMarried with Children  level.

So can anyone help me, where on current TV schedules can I find a happy and successful marriage?

Gastric Bypass Surgery  
I’m sick whenever I read the website of someone who is overweight talking about this. They’ll say they need to lose weight, outline a sensible diet/exercise programme for themselves then not stick with it. Then they’re upset because their plan didn’t work and they’ll never lose weight blah blah blah. So then they think, ‘I know, I’ll just get the surgery and I’ll be thin and happy and I won’t have to work on me anymore!’

I hate hate hate that. Losing weight takes time and effort and dare I say it - WORK. I worked myself like crazy to get fit and healthy, against the PCOS background and genetics. Why are people so lazy?

Little Mermaid lyrics  
FromPoor Unfortunate Souls , “this one longing to be thinner, that one wants to get the girl”.

Fair enough that the girl mermaid wanted to be thinner, but what I don’t get is why the guy had to be all buff to get the fat chick? He likes her as she is - fat and all so why did he have to change? It seemed to me that their level of attractiveness was lined up and good to go so why didn’t the two of them just make a go of it? Low self-esteem? Fear?

R2 Visited Me  
She showed up during lunch two days ago. It was wonderful to see her. She told me E is still really ill as well, so I am reassured that she isn’t mad at me [which is what I convinced myself of while she’s been quiet].

Trying to explain all that’s happened is impossible. I think I need to come up with a sort of three sentence description to send to people. I have e-mails and two people on MySpace waiting for replies from me and they all need to know what’s up. I also want to tell a few of my friends who don’t visit here what’s happened, but I just can’t open that can of worms neatly. In person was hard enough - especially with my voice going sometimes and the coughing etc. I just need some way to tell people what’s happening.

Walked to Budgens  
That’s right. Yesterday Weasel and I went for a walk. Normally, I turn around after five to 10 minutes because I don’t have the energy to keep going. I felt pretty okay and I was trying to decide how far I could/should go and in the end I made it to the shop. I didn’t do anything beyond walking but I was pretty tired when we go home. I had a nap around 3pm which helped.

It was the first time I’ve been in a shop since the last weekend of September 2007. I wanted to spend more time and go slowly because it was overwhelming and I was so out of sync with everything but Weasel had a meeting and needed to get back.

I’m back to trying to find the balance again.

Comments (3) 

-->  Wednesday 9 January, 2008 
  Too many stars and not enough sky   
          Filed under: Debbie  — Ezekiel @ 11:57

I’m officially half way through my antibiotic injections. I’ve had a tube thingy* in my right hand for the last couple of days, I head in at 8am and 5pm, get my injection and go home. This has been the least painful tube thingy I’ve ever had. Overall, very pleased with how it is going and so very very very grateful I’m not in hospital to have this done.

* I’m not sure what this is called. But basically, they use a needle to put a tube into my vein. It has wings that are taped down and a little cap and an octopus that they can inject into without having to put a new hole in me every time.

I have had my morphine upped because it just wasn’t doing the job. I have 45mg slow release tablets twice a day and liquid every three hours. This means I can actually function. Yesterday morning I woke up at 6:15 and wasn’t due morphine until 6:50, so I thought I’d just have some paracetamol and have the morphine when I woke up to go to the hospital. The instructions for the liquid are every three to four hours so I should have been fine. Sadly, no. I had the morphine when I woke up, we went to hospital and I spent the entire time in excruciating pain. I made it home, had a shower then tried to go to bed. It wouldn’t let up. Finally, at 10 I went and asked Weasel to please help me.

I ended up walking in circles, trying not to cry and trying to breathe until 10:15 when I could have more paracetamol. Then I walked in circles some more and Weasel called about upping my background morphine [see 45mg now instead of 30mg]. I finally got to have more liquid a little early at 10:40. 20 minutes after that and I could think again. I spent a few hours feeling very tender - like I’d been hit by a truck I said to Weasel. So last night, I took a dose at 11:15, set an alarm for 2:15 and 5:15 and I’ve had the best night’s sleep I’ve had since the sleeping pills. Because I didn’t have to watch the clock I was able to relax that little bit more. Because I had enough painkillers I wasn’t uncomfortable and thinking my pillow had been switched with a brick.

Still having breathing issues, still tired but if I keep on top of the painkillers I can almost function. I’m walking much better, and I think my hearing is improving again.

Stoat and Mal have been driving us to my injections every day. I wasn’t expecting it at all. I was planning on taxis and thinking about budgets. Stoat comes in the morning, takes us in and waits then brings us home. He then drops the car off with Mal and gets the bus home. She drives over after work, takes us in, waits, brings us home then goes home herself. I’m grateful, but I feel bad for putting them out so much. Mal just says it’s the least they can do. I’m not very good at this having things done for me. I’m trying to roll with it and just appreciate their generosity, but it is hard.

My tube thingy isn’t in love with the typing idea, so I’d best leave off here.

Comments (0) 

-->  Saturday 5 January, 2008 
  Tears turn to steal   
          Filed under: Debbie  — Ezekiel @ 17:27

For New Years I compromised. I napped from 10pm to 11pm then watched the New Year stuff on BBC1 until after the fireworks. Fireworks display was awesome. It went on for ten minutes and had choreographed boats and of course stuff coming off the London Eye. In fact, god bless YouTube, they have it - go watch . I kissed my Weasel at midnight and we hoped for a better year.

Weasel’s birthday was on the 2nd and I was too ill to do much about it [she did get to go out with friends though, thank you Holly & Mish!] and I got to rant and cry to my Dad so win. I think we’ll carry it over with Doodle’s birthday [October last year] and Mal’s birthday [3rd January]. I’ve managed to ruin three birthdays, Christmas and New Years. This is working out just great.

I really wish I had something other than my health to talk about. My life is so one tracked at the moment.

I saw the vasculitis people on Thursday. They decided that the methotrexate wasn’t working for me and outlined a new regime. This one is the one that’s been used to treat Wegener’s for the last 30 years, so we’re fairly confident. Unfortunately, it has side effects like infertility, baldness and increased risk of bladder cancer. It is an injection that takes about an hour all told. They also weren’t very pleased with the whole coughing/wheezing thing I was doing so I got to see a chest specialist. He decided that I ought to have a another CT scan of my chest and a lung function test right then. So off we went. The he decided that the next day [Friday] I ought to have a bronchoscopy.

7:50am Friday we’re at the hospital. They get me all checked in, I was miserable because despite the tranquilliser I hadn’t slept the night before and I was in a lot of pain [even with precious morphine]. There were issues when they asked me to lie down because my whole face explodes when I do that so they let me sit up for it. They gave me a sedative which was nice, because I don’t remember a thing about the procedure. I don’t remember being in recovery either, but Weasel told me about it. I woke up in my new home of the Planned Short Stay Unit where they administered a very big bag of steroids and then the first of my new Wegener’s treatment.

Then they told me that they wanted to admit me for three or four days to give me antibiotics. I tried my best to remain calm and told them through my tears that I just couldn’t do that and I’d be willing to do anything else. So she went off to consult colleagues and they decided that I could simply come in at 8am and 5pm from Monday-Friday and have it administered then I could go home. I don’t mind this at all. They’ve given me a pile of oral antibiotics to get me through the weekend and I’m instructed to head to A&E if things get worse. But overall, I’m pleased.

I’ve ended up with two fairly impressive needle bruises in the back of my right hand, a failed attempted hole in my left hand and two nice needle bruises in both elbows. This illness has totally made me look like a junkie. Awesome.

While we were at the hospital Mal cleaned up the house a bit. All last night it was a pleasure to discover what had been cleaned. Part of me has just given up on the whole cleaning thing. Accepted that the house will not be up to my usual standard until I’m well and I just have to let it go. No this doesn’t make me happy, but with me no longer being paid [see the not working for four months] we can’t afford that cleaner we talked about and Weasel doesn’t have the time/inclination to do it.

The big bag of steroids has helped so much. The gland swelling I had is gone, my senses of smell and taste are coming back a little and I even think my hearing might be a bit better. I’m still in some pain, but lady morphine helps. I’m still coughing/wheezing a bit, but not as much. I slept better last night than I have since I came off the sleeping pills. Overall, as said to Weasel today, cautiously optimistic.

Comments (4) 

-->  Monday 31 December, 2007 
  Auld Lang Syne   
          Filed under: Debbie  — Ezekiel @ 19:15

I feel I ought to say something to round off this year…

Dear 2007,

Fuck you.

Sincerely, 
Me

I was doing pretty good on the morphine, I had to take the liquid form every three hours though to stay out of pain and that meant very little sleep. Then yesterday, I thought I’m feeling better, I’m also running low on the liquid, why not drop to 5ml instead of 10ml? So I did, for two doses. Then I had a coughing fit. I spent all night holding my head and praying for the sweet release of death. Then there was drama because I was desperate for a hot shower around 5am and the hot water doesn’t turn until around 6am. I thought we could just boost it and I’d be fine, but no. Poor Weasel was up most the night with her stomach then she had to get up to deal with me being all in pain and upset about the no shower thing.

The doctor was great today, he’s upped my background pill morphine, more steroids, written a letter for us to take to the vasculitis people, arranged a chest x-ray [I’m still wheezing and the breathing was so crap today he recommended I not take the methotrexate today just in case] and a note signing me off work for another month. This is four months off work. Crappy.

Talking/laughing is a challenge, I end up coughing still. I still have no sense of taste or smell, in face the only one of my senses that is working properly is touch. But very often I’m in so much misery I don’t want to be touched. Grumble.

50% of me wants to stay up and watch Big Ben chime and the fireworks and happy people and the other 50% of me wants to go to bed and stay there for a year. We’ll see who wins.

Hope everyone enjoys their day/evening tonight and let’s hope 2008 brings good things for us all.

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