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.

Let’s talk about fun things!

My parents got here before 5pm on May 5th just as I predicted. We had a gloriously fun time unpacking their suitcases and seeing all the wonderful goodies they brought me. 14 pounds of Swedish Fish anyone? Awesome. There were many Reese’s Peanut Butter products, epazote, Crisp Meat Burritos from Fiesta Ole [my vegetarianism takes a back seat to these bad boys - I ate them cold.], Strawberry Twizzlers and boysenberries.

We spent a few days at home before heading off to Cornwall. I had a doctor appointment because I was coughing up blood [new for me]. On the way to Cornwall, we stopped to see Stonehenge. It is amazing. We got to walk [get pushed in my case] the whole way around. There were sheep too.

We stayed at Tretheake Manor, Veryan. The place was huge! We had one spare bedroom, three bathrooms, the lounge was the same size as the entire ground floor of my house. We saw and did many things. My favourite was the Eden Project. Absolutely incredible. I saw bananas growing on their tree, pineapples on their bushes and vanilla on the vine. Plus, it was fully accessible. I have been coughing so much that I can’t walk very far so I used my chair a lot. Many places we visited were happy to charge me an admission fee, only to find that there was no where for me to go. Frustrating.

Everyone knows that I pee a little when I cough. Having pneumonia means that I cough rather a lot. Unfortunately, I kept being in inconvenient places when I had coughing fits and ended up weeing on everything. Like the car seat, at least three times. Two chairs. I wear the pads, but they’re just not perfect. Fun. Makes me really love my life. Best one by far though, we got caught in a 45-minute traffic jam on the A1 and I had to pee. If I didn’t pee, I’d be forced to when I coughed. So, I walked to the side of the road, in a ditch and behind a tree and went there. I carry baby wipes everywhere I go, they proved useful yet again. Also, the anti-bacterial gel.

The baby wipes were useful when Dad hit a rock on the side of a road and slashed our tyre on our way to Land’s End. Had to put the spare on and Dad could clean up thanks to me. Weasel used the power of smart phone to find a garage that could replace the tyre. No one cried.

I didn’t get to see the beach as much as I’d hoped due to wheelchairs disliking sand. Also missed seeing inside Mount St Michael because they think Saturdays are the best days to close for ongoing works.

Mom, Dad and I spent eight days after Cornwall just hanging out. We cooked a few things, did a few puzzles, talked a lot, watched some TV/films and went for walks. They were willing and able to push me in my chair so I could go out. The most amazing thing was they asked if there was anything I needed to help me around the house. I said a folding stool/chair for the kitchen. So I could sit and still do dishes, chop things and stir. So my Mom went a found a pair and bought them for me. When Mom saw how tired Fergus looked from being my sole carer she said she wanted to get someone to help him. She did a bunch of looking and found an English Bulldog listed as 40cm. My Dad suggested we call him Beaumont. When he arrived, he turned out to only be 25cm. So he can’t help Fergus much, but he is very charming. Mom asked if there was anything else I needed, I said the cordless phone designed for hearing aid users would be awesome. She bought a pair that came with an ear hook so I can be hands free. This is awesome because my hands always fall asleep while I’m on the phone.

Then joked that I still had my fantasy shopping list [literally, that's the file name]. She sat down and found every item and ordered it. It was like 20 birthdays and Christmases. She said that because they’re so far away they’re never sure what I need. So I got:

• Giant 8.5″ Rockingham Forge Luxx Oriental Knife
• Flat Whisk
• Mortar and Pestle
• Mandoline Set
• Bundt pan
• Cheese Wire Slicer w/ three spare wires
• 4lb Loaf Pan
• Microplane Zester
• 3 Springform Cake Tins
• Palette Knife
• Roasting Pan stainless steel
• 3 Mixing Bowls with Non-Slip rubber base
• 9 towels
• Kitchen timer
• 40 Piece Storage and Freezer Containers
• Gas for lighter
• Waste Collector + Scraper

My Dad seasoned my iron cookware and it is so gorgeous now. They cleaned behind my oven [oh so nice!]. Dad mowed my lawn. Mom sewed a pile of things with me on my new machine. Mom went to all my doctors appointments with me so now she knows what I’m talking about. They still drink loads of Diet Pepsi. They’re looking really well and happy. I think this was the most perfect bit of time I’ve ever had with them, ever. I miss them loads.

They went home very early on the 26th.

Back: Dad, Mom, Weasel, Doodle, Stoat; Front: Me & Fergus

I didn’t mean to disappear for a month. It just sort of happened. I’m not entirely sure where to begin. I’m certain I don’t want to recap the month in one Debbie. Let’s go with the easy stuff.

Heath:

• I did not crack a rib, I pulled a muscle. Incredibly painful, same treatment.
• I tried a nebuliser, it did not help.
• I have pneumonia. Thus all the blood I was coughing up.
• My right intermediate bronchi airway has narrowed to 1mm again. Thus all the coughing generally.
• I’m on antibiotics for the pneumonia and still awaiting word for my dilatation.
• I’ve been using my wheelchair pretty exclusively since moving makes me cough.
• Coughing is incredibly exhausting. I slept for about 13 hours the other night and wanted to go to bed four hours after I woke up.

General news:

• I heard from the hearing dog people; I am too sick to care for a dog and I’m not deaf enough.
• My parents visit was perfect. I adored every moment. Will go into detail another day as I still cry if I think about it too much.
• I’m working a my new design again, I stopped for a few months.
• Doodle, Weasel and I went to see Ingrid Michaelson on Wednesday. It was an awesome show. I did not take my wheelchair.
• I had to cancel my visit to see Horatio this weekend because of death lungs.
• Horatio turned 26 on the 11th.
• I finished my friend Mary’s website. I had so much playing with it. She even paid me for my efforts, which felt really awesome.

I think I’m depressed. Not up-my-antidepressant depressed, just very down. My body reminding me that it is still broken and the activities of the month catching up. I’m thinking that I’ll tackle our week in Cornwall next then the weeks around that.

I’ve cracked a rib. All that coughing that I had to do was too much for it. It’s on my left hand side just under my breast. I went to a GP yesterday and I have shiny codeine, so I’m doing better now. Fergus is very good at wrapping round my left side and holding it steady while I cough.

‘Stopping’ as per the advice of my therapist; has proven to be a good thing. I’m still going for walks, but shorter and much, much slower. Been watching many films and knitting and not standing/moving as much.

I just got home from the hospital. I was there for 2.5 hours. I saw a vasculitis person, they’re happy with my medicines at the moment. They’re concerned about the cracked rib, they want to get a bone density scan done. I was told my old ENT was about and wanted to see me. So I headed off there. Apparently, I display all of the signs and symptoms of Wegener’s Granulomatosis from an ENT perspective. I have a narrowed trachea, I have a saddle nose and I have ear/hearing damage. Plus, I’ve been under their care since I got sick, so they have records of the whole process. So he wants to write me up for a paper! I had a video taken through my nose to my throat, I had photos of taken of my ears and nose. I also got another hearing test. It is very exciting.

This is a couple weeks after my therapist said she was going to write a case study about me too. I’m very popular with the medical community. I’m just pleased to know there is a chance that I could indirectly help someone else avoid all of this.

Big plan this weekend is house cleaning/clearing in preparation of my parents. They’ll need somewhere to sleep after all. It’s a Bank Holiday on Monday so Weasel will be able to help me loads.

Stoat is coming over on Tuesday. We’re going to make mushroom burgers and buns [for freezing] and make a meal plan for Cornwall so we can be sure we have all the equipment we’ll need.

I see my chest doctor on Thursday. Hopefully with good news!

My hair cut and colour went perfectly. I’m still really pleased with my hairdresser. I should take some photos while it is still fresh. Actually, my parents will take many photos next week, I’ll wait. So excited to see them again.

My therapist did have a good idea: STOP.

Who could have known that breathing issues exacerbated by activity could be helped by reducing activity?!

Shocking I tell you, shocking!

My whole body hurts from the coughing. Okay, not my whole body. My limbs are okay. Mostly.

I’m scared to move much, I put off changing position as long as I can [i.e. going to bed] so I don’t prompt another coughing fit. This coughing is incredibly painful, which is kind of new. I called last Monday to reschedule my May chest doctor appointments. My doctor called back on Thursday and said he’d do his best to get me in before my Cornish holiday. We shall see.

Meanwhile, I watch TV, knit, computer a bit, struggle with stairs [and showers, standing and talking!] and generally get a bit stir-crazy and listless.

Sign language started up again on Friday. Had a fit during class and I couldn’t really explain to the teacher what was wrong because my BLS skills aren’t up to explaining Wegener’s Granulomatosis. We got to give directions using a map, very fun I thought.

Getting my hair done tomorrow. Still haven’t settled on how I’ll get there. Thought I’d see how I felt tomorrow.

My parents visit is looming large and I’m so very excited. We’ve got their transport to my house sorted now. The car is sorted. Cornwall is sorted. I love seeing them and there is so much to look forward to. Plus, I get to spend Mother’s Day with my Mom this year! How awesome is that?

My head is very angry and throbbing at me, so I shall depart.

So I’ve decided that since no one wants my filthy disease ridden blood or organs than I’m going to just donate my body to science. When I’m done with it, of course.

And unless my lungs start playing ball and providing my body with much needed oxygen it may be sooner than we think.

My house is slowly coming back alive after the carpet cleaning last week. Who knew that the contents of the lounge and boxing room could be smooshed rather uncomfortably into two double bedrooms? The CDs are back in place, the dressing room is almost normal again and Weasel and I are going through her clothes and shoes this evening.

I have been breathing very badly for about three weeks now. I’m angry and bitter all over again. I’m seeing my therapist tomorrow, maybe she’ll have some ideas.

I got too comfortable.