I feel guilty for not writing. I’m not writing because I don’t really have anything uplifting to say.

Good thing: Doctor declared my ear infection from 19th April clear on 20th May.

Bad thing: On 22th May the ear infection came back.

Good thing: 26th May got me more antibiotics to replace my regular ones and now it feels a bit better.

Very good thing: Do not have to increase steroids! Yay!

Bad thing: Still horribly depressed and having to work each day to make myself get out of bed.

Good thing: Pulmonary assessment went really well. I am too far advanced physically for the rehab programme. The physiotherapist is going to work with my one-on-one to improve my exercise. She’s referred me to a dietitian. Hopefully both of them will help my case and my chest doctor will leave me alone re: my weight.

Good thing: Horatio is home!! Our schedule is completely fucked, but he is home and safe. He had a fabulous time.

Good thing: I get to see him on Saturday so he, Weasel, Doodle and I can go see Depeche Mode!!!

Very good thing: Depeche Mode!!! This will be my fourth time seeing them and I am so very excited. The O2 Arena has facilities for hearing aid users too so I am going to rock so hard. Well, assuming my ear infection lets me wear my hearing aid.

Bad thing: Forgot to get Mal’s sewing machine while we were there last weekend.

Good thing: Finishing knitting Weasel’s skirt, it is blocking as I type. Once it is blocked, I’ll stitch the sides and knit the waist band and she’ll be good to go.

Bad thing: My house is messy and I cannot seem to get it together enough to clean properly.

Good thing: Going to make Shepherd’s Pie this weekend I hope. I discovered that if one saves some liquid from the sauce and pours it over the mashed potato it enhances the flavour.

Bad thing: Just got an e-mail, the Depeche Mode gig has been postponed. Dave is ill. Sad. Hope he feels better soon.

Good thing: Our tickets will be valid for the new date.

Bad thing: I want to talk to someone about it. I tried Horatio’s mobile and he didn’t answer. Weasel is in meetings. BlanketGirl is still asleep. I couldn’t think of anyone else to call.

Bad thing: Horatio may not come this weekend now.

Good thing: Made refried beans last week. They turned out beautifully. In fact, recipe here at the bottom so those disinterested can skip over:

Crock Pot Refried Beans

2 c dry pinto beans, rinsed
1 c dry black beans, rinsed
1 red onion, diced
6 cloves garlic, minced
1/2 jalapeño, de-seeded and minced
5 c broth [I used vegetable, but beef or chicken would be fine]
1 tbsp cumin
1 tbsp thyme
2 tbsp balsamic vinegar
2 tsp salt
1/2 tsp pepper

My original recipe says 8 hours on high, but I cooked mine for 23 hours.

Stir once in a while. If liquid is running low, add more. I didn’t need to add more.

After everything is done to your taste, drain the beans and run 1/2-2/3 through a liquidiser and stir in the rest of the whole beans. Alternatively, just use a potato masher on the whole lot. Add back some water if needed.

I saved the juice left after I drained the beans. I used it to flavour the Quorn for chimichangas. I’m sure it could be used for other things too.

It was quite mild still, I think next time I’ll add more jalapeño, cumin and I think I’d like more vinegar.

I got three portions out of this – two are frozen and one got eaten straight away.

Eurovision was on Saturday. One of my favourite events of the year. I get very excited. Weasel and I made pizza, I had a Sprite and gin. I printed score cards from the BBC’s website. I adore the campiness, I love how seriously everyone takes it, I love the spectacle.

I was disappointed with our song, but it seemed to go over well, the UK got in the top five for the first time since 2002. I’ve only been watching for four years, so this was the first time I saw us get any decent points. My favourites were Israel and Armenia. I had several others I liked, but Weasel and I voted for them. Graham Norton did a fine job filling the shoes of Terry Wogan.

Did not like the song that won. Alexander Rybak of Norway played Fairytale. My problem is that I think it is a creepy, stalker song. The first line, ‘Years ago, when I was younger’ – this is an old relationship that clearly ended for whatever reason. Why hasn’t he moved on? It reminded me of Ben Ryan and his obsession with his ex-girlfriend. I am certain I have put too much weight into it all, but once the connection was made in my head I had trouble breaking it.

This got me thinking about love songs in general. I realised, I don’t really like the ‘traditional’ ones about how X can’t live without Y; how X completes Y and makes life worth living; how X was nothing until they met Y. I started listing love songs I do love and I saw that the love songs I love are more tributes. Love Song by The Cure or Somebody by Depeche Mode. Those two are more about the process, about the emotion itself. I don’t like the idea put forth by ‘traditional’ love songs of being so wholly consumed by someone else. It scares me.

I’ve seemingly given up sleeping properly, so I’m feeling really out-of-body. Horatio has been in Tokyo for just over a week and I miss him terribly. I don’t have a lot of friends, I miss having someone to talk to. We’ve been e-mailing the whole time, he even called once. I want him to focus on his holiday though, this is an amazing opportunity and I have no desire to distract him. But it means I miss him.

I miss having friends generally. Once I got ill I very quickly became no more fun. Even if I do feel like someone would spend time with me, I feel guilty because I can’t do much of anything. I can’t entertain them properly or be the hostess I want to be. I keep thinking of inviting some random American friend to come visit, but I invaribly end up asking why they would bother? They’d sit in my house with me staring at the walls. That’s not something I can ask of anyone.

I hate feeling lonely.

The other problem is I still can’t wear my left hearing aid, so even when I put the effort in I don’t feel connected because I can’t hear anyone. Last week at knitting it was rather warm in the cafe so we had the door open. All I could hear was traffic and passers-by, the talking in the cafe was drowned out.

I see my doctor tomorrow, so maybe he’ll tell me my ear is fine now and I just need to get re-adjusted to my hearing aid. Or he’ll tell me it is still swollen and I need to keep using the drops.

I’m scared for my pulmonary assessment on Thursday too. I haven’t been able to exercise very much since I’ve been feeling so poorly.

Things will get properly better one day, right?

My sincere apologies for neglecting Debbie for so long. I am overwhelmed with life and my habit is to hide when things get too big. I also apologise for posting two in such quick succession.

Remember the hearing loop I got for my birthday? I was disappointed with it initially. Weasel said she thought our set-up for testing had been faulty and insisted that we put it up properly. Last night we wound the wire out and around the room and plugged it all in. I tuned my hearing aid to it and lo! It worked! We tested it with the guitar and the bass and it was wonderful! I could even hear from the kitchen/hall way. I can still hear me singing, but definitely not as much as before. I think it’ll work!

I used it this morning to do my yogalates, I turned the room sound all the way down so Weasel could work from her desk without being interrupted. Win-win! The only odd thing I’ve found so far is that if my head/hearing aids are level with the box, I get muted. Also when I’m lying on my back on the floor. I’m going to do careful experimentations to see if there’s anything we can do.

I watched The Diving Bell and the Butterfly yesterday. It is an amazing story. The cinematography is incredibly. It made me appreciate what I do have so much more. I do feel trapped a lot of the time, but I can still move. I can still see. I can still speak. I can still laugh and find joy if I look hard enough. I recommend it – especially to you BlanketGirl!

Today is Horatio’s 25th birthday spectacular! He is celebrating his birthday in true style by going to Tokyo. He and a few friends have taken off for a couple of weeks of exploration, fandom and spending money.

I am very lucky to have him in my life. He is an excellent friend to me and brings me a fair amount of joy. We get along famously and share many interests [anime, movies, TV] and hobbies [card games, cycling]. He makes me laugh a lot and he puts up with my teasing beautifully.

The best thing about him though, is when Weasel and I are craving Dominos, he will call and order it for us. We have phone issues that he doesn’t have.

He is the only boy for me.

In other news:
My nails are really long.

Fergus is incredibly cute.

I wrote the below and saved it as a draft back on the 8th:
Is there anything better than cookies for breakfast?

Yes. BrokenPictureTelephone.com

I’m in love. If you want to play too, find me, I’m registered as ezekiel.

So I think these two Debbies can help you understand why I feel so completely overwhelmed.

I started writing a Debbie and it she got incredibly long. I have to break it up a bit. We’re start by rewinding to…

• 30th April – decided I was definitely flaring but only decided at 5:20pm so had to wait until Friday for help. Talked to vasculitis doctor and he said I should put my steroids back up to 5mg. I’d only made it down to 4mg, but I did it for six weeks. My teeth were still hurting off and on, so I thought maybe I just needed to rest.
• I rested and lived in hope all weekend and finally decided I’d better put increase the steroids on Monday.
• Eleanor’s employment tribunal was on Wednesday, so I spent Monday helping her get papers organised. My heart breaks for her, she has an impossible situation.
• Spent the evening resting and knitting. I finished the back of Weasel’s skirt and started on the front.
• My ear refused to stop hurting so I finally went to the doctor’s on Tuesday.
  • I have an ear infection. I have antibiotic/steroid ear drops which have helped tremendously.
  • I was seen with a student doctor person too and she got to take my bloods. She hadn’t done it in a year, but my regular doctor thought it would be good practice. And I said I was a great person to practice on since I wasn’t afraid of needles and I could tell her where my veins are. She did perfectly.
  • I got my results a couple of days later. I am definitely flaring, my CRP was 10 [normal is 6 or less, my record was 148]. So I am back on 5mg of steroids, I will stay here for two months then we will try reducing again.
  • I took my prescription to the pharmacist’s where they told me that the drops were no longer being made. I went back to the doctor’s only to be told all of them were out on house calls [I love that my doctors do house calls]. I left a message. I had a new prescription faxed to the pharmacy and Weasel went to collect it for me. This was a lot of cycling for me during a flare, my teeth were not pleased with me.
• Wednesday I went to Eleanor’s tribunal with Robin. First time I’ve seen Ralph since I had to stop working in October 2007. Eleanor technically won, but there is no money to give her, so it didn’t do any good.
• I skipped knitting group as I was exhausted from the tribunal and my head/face were very unhappy.
• Thursday Weasel and I made delicious baked chimichangas. Was all I had energy for, but very worth it.
• Friday Stoat invited me to go shopping at my favourite co-op.
  • I had breakfast and noted that the milk was a little warm, so I decreased the temperature in the fridge.
  • We shopped and I got many lovely things like bread flour and chutneys and mustards.
  • Afterwards we went to a local park and had a lovely wander in the sunshine. I met a lovely King Charles Spaniel who looked very much like a running throw pillow.
• I stored the leftover chimichangas in a box and Weasel to put them in the freezer [I am not so good at getting down to the freezer anymore, my knees and back complain]. Noticed that some of the dinner things were a little … thawed. Inspection of the freezer revealed that the metal bits normally encrusted with ice were clear. Realised the fridge had died sometime during Thursday night.
  • We called Stoat and Mal and they brought us their camping coolers at 9:30pm on a Friday night. We rescued what we could and finished up our evening.
  • Saturday morning Weasel called our landlord to ask if he wanted to replace the fridge or if we should do it. He said we could, so I got online and started researching.
  • Our fridge is stored under our stairs in a pantry, it is very short – 1350mm tall. But it has a roughly equal fridge/freezer division and it worked well for us and the space. I found a Frigidaire one that would work for us and the website said I could reserve it!
  • I called Mal with the measurements and they measured the car to see if it would fit. It would, so I went to reserve it only to find that it was unavailable at our local shop and we’d have to travel to other cities 30 miles away to get it. I called the customer service line to ask when the next one would be in and they said if we got to the shop before 3pm they’d be able to arrange next day delivery.
  • Weasel and I went to the shop, found the one we wanted was also available in silver, so we asked if that one was in stock. It wasn’t, so we ordered the white one.
  • Turns out ‘next day’ didn’t mean what we were hoping; it wouldn’t be Sunday or Monday since they don’t deliver then and Tuesday is fully booked. We get our new fridge on Wednesday.
  • Meanwhile, I’ve been creatively using as much freezer/fridge food as I can. Last night’s dinner was grilled halloumi, veggie sausages and scrambled eggs with vegetables. I made smoothies out of the fruit that I’d had frozen. I’m going to make a broccoli soup but I’m stumped about the green beans. They might be a casualty.

This week is Vasculitis Awareness Week! Woo!! Party!

So I am doing my one thing to help raise awareness.

Long time readers will be very familiar with my tale so I won’t bore them. First time or new readers can catch up with my sorry saga by clicking on ‘The Illness’ on the right.

Anyone too lazy/busy to click I shall sum up: I have a form of vasculitis called Wegener’s Granulomatosis. I’ve learnt how to spell all kinds of new and exciting words thanks to WG. Like cyclophosphamide, one of three chemotherapy drugs I’ve had the joy of taking to suppress my immune system. That’s the other side of WG – it is auto-immune so it thinks nice healthy tissue like my lungs are actually evil outsiders coming to kill me. So it does a pre-emptive attack and tries to kill me; I am a victim of friendly fire really.

I am very lucky; I’ve only lost my hearing [I am moderately/severely deaf in both ears], developed a saddle nose and my right lung is a bit shagged. None of my other major organs had the chance to be attacked before I was diagnosed and treated. Other people I know with WG have lost their vision, developed lesions on their brains, drop foot, kidneys fail, lung collapse and a whole host of other really horrible things. Thing with vasculitis is that it is inflamed blood vessels, so anywhere there are blood vessels there is potential to be damaged. And seeing how blood vessels are everywhere in your body it really kind of sucks.

I had my whole life stopped and rebooted. I’m still not back online and I’ve been sick since December 2006.

For more on vasculitis visit the Vasculitis Foundation. If you feel like donating any money to the cause, please let me be greedy and ask that you donate to my local hospital and the centre of excellence in the UK. Our cause isn’t in their drop down, so you must e-mail them and say it is for ‘Cambridge University (Vasculitis)’.

BADD brought to us by Diary of a Goldfish.

Let me start by saying I feel woefully under qualified to writing anything about disablism. Disability is a very new hat to me still.

My hearing went in January [right ear] and October [left ear] 2007 and my breathing in December 2007. I spent 2008 at home resting and trying to heal enough to start living again. Now I am wandering out into the world, but I haven’t felt discriminated against really.

One problem I had was at the cinema where there is no hearing loop. I ended up using my ‘music’ setting turned up. The problem with this solution is that hearing aids can’t tell the difference between sound from the movie and sound from the person behind me rustling candy wrappers or talking. I felt guilty for wanting a better system for myself. I didn’t deserve to have the same experience at the cinema. I was less-than. I haven’t been back to the cinema since. So business people, wherever possible please include loops for those of us who are differently abled.

On-the-street encounters become challenging too. I feel very vulnerable walking out by myself. I once had a woman across the street from me ask a question [I guessed by her body language] and I replied that I was deaf. She waved an apologetic hand and moved on. Another time I saw a man walking towards me, eye contact was made and his lips were moving. I explained that I was hard of hearing and finally after a little back and forth we sorted it out – he’d been singing to himself. Just last weekend, I was using one hearing aid since my left ear is swollen and I had a person collecting for charity try to accost me. I ignored him though because I only had the one aid and I wasn’t feeling too well. From his point of view though, I must have looked so incredibly rude. I don’t like being rude, but equally, I’m not willing to explain everything to a passing stranger.

The other problem is when I tell someone that I can’t hear them they’ll smile and then keep talking at the same volume. So I just smile and ignore them. There’s nothing I can do to meet them half way. So when you’re interacting with people and they don’t respond how you think they should, give them some slack, you never know if they’re just deaf.

This is just the hearing side of my disabilities. I’ve had doctors who are leading me off for lung function tests – who know I have lung issues – charge off down the hall way ahead of me while I try to keep them in sight at my much slower pace. I find myself regularly apologising for being slow. I hate having to stop and rest.

I also apologise for not being able to hear. I feel so guilty for putting people out just because I’m an incomplete person.

Now I have to ask myself, do I think this about other disabled people? No. I genuinely think that they deserve every courtesy to help them navigate a world that doesn’t recognise their personhood. So why am I different?

This is my usual problem. The standards and expectations I have for myself are huge and unattainable compared to the expectation I have of other people. Everyone else gets compassion and respect from me, but I haven’t figured out how to turn that on myself yet.

I expect so much of my disabilities are tied up in my disease that I haven’t learnt how to separate the two and make peace. I want to though. Mostly, I just really want my old life back. So I am in awe of anyone who has managed to embrace a difference and move forward in an unfriendly world.

I sincerely hope I haven’t offended anyone.