Archives For swelling

The 17th of April.

Awake at half past five. Why? Stupid brain. I tossed and turned for a llittle bit, started listening to the Today programme, then got bored and watched an episode of Dexter. Mommy day my light was on so she came in to say hello, and I asked her to bring up my Tramadol so I could take it and give it a chance to start working before I started moving around.

I spent my morning frantically finishing Michaela’s black sheep, working right up until quarter to one when Daddy and I had to go to hospital for more bloods. Clinic was totally empty as it hadn’t started yet which was lovely, and Igor appeared promptly. All my cultures came back negative, but my CRP (infection marker) was 200 (it should be less than 5) so he wanted to make sure it was going in the right direction. We looked at my x-ray which showed no fractures, but the spaces between my vertebrae are smaller than they ought to be. If the pain doesn’t go away then I’ll need an MRI. Got some antihistamines from pharmacy as Tramadol makes me itchy, then Daddy took me to Black Sheep!

I got to see baby Blossom (so small!), and it was so nice to see Michaela back! I told her and James that I wanted short and vibrant, so now I’m a pink and blue pixie and I love it.

The 18th of April.

Three episodes of Dexter this morning. Plus several podcasts before I actually fell asleep. I’m so mad at my body because I’m not even on steroids – I ought to be able to sleep! I had my Tramadol upstairs already so I had it about forty minutes before I actually got up. After breakfast, I went through the weekend Guardian which took up until lunchtime.

This afternoon, I have finished Anna’s elephant and taken a frankly absurd amount of selfies because I am obsessed with my new hair. I feel pretty great about the way I look right now. Super fly. Yesterday, Michaela couldn’t get over the change in my face, which Ram also noticed, and I’m just like “Yes! This is what I’m supposed to look like! Do you now understand why I get upset about looking different “?

My right foot is swelling again a little so I’m taking furosemide but it’s still quite uncomfortable inside my slipper, so I might have to lie on my back with my legs in the air for a while. I’d also really like to go back to the gym but the pain hasn’t improved enough yet. And I have ulcers in my mouth that are not cooperating with the treatment I am doing, so tongue injections are a possibility this week.

The 28th of February. 

Just to add insult to injury, my period has returned. I only just stopped taking Provera! It is not supposed to work like this! Going to have to see Dr. Robinson and get her to give me the coil, provided I can get the haem team to decide what they’re going to do about clexane. 

I’ve felt really kind of pathetic all day – cold, no appetite, no interest in being productive. I finally read the paper this afternoon after Mommy washed my hair. I at least look vaguely human today. 

My hands are almost back to normal. Still got squidgy arms, but I am getting there. I’m just grateful it’s worked! See how long it lasts. 

This evening Christine is making a dinner involving pheasant breasts because I am too rubbish to venture out to a restauran. Every day my breathing doesn’t improve, I worry a bit more. 

The 1st of March.

I am nearly back to my proper size I think! The size 16 pyjama top I’ve been sporting for the past few nights is now loose which is nice – I enjoy having all my limbs be in proportion.

The fluclox is certainly affecting my digestive system – my tummy is just very unenthusiastic about any food at all. Grandma came for Sunday lunch and I was really not thrilled at the prospect of roast beef at one o’clock. Only one more day, thankfully. 

I have just felt generally grotty, so watched the rugby and crocheted. I’ve been productive, but quiet. 

Last night I started having a panic about what I’d do if Mommy ever gets ill and can’t look after me. I hope I never have to deal with the reality because it would just be the end of everything. It’s thoughts like this that make me think it would be better if I died sooner rather than later. Which is very selfish on my part. 

The 25th of January. 

Today has again not been great. I had Zopiclone so I at least had a decent sleep, but I am still feeling fairly crap about my inflated face and arms. 

We were supposed to be having a celebratory day for my birthday, Christine’s new job and my parents’ anniversary tomorrow, but I was just not able to enter into the spirit. I just had a bagel at brunch, then reluctantly went to the panto because at least I’d be sitting in the dark and no one would be able to see my face. I actually started to enjoy the performance because it is a good show, but then it was decided that we’d go and have coffee in Starbucks in Selfridges. That just ended up being too much for me to cope with, and I had a minor explosion. I didn’t want to be there, didn’t want people to see me. It’s not that I’m worried about what they think of my appearance – I don’t want anyone to think this is my normal appearance at all. And I know we’re supposed to be celebrating but what is there for me to celebrate? It’s great, you all go forward with your lives, for me it’s just well done for not being dead yet, everything’s just as shit if not shittier than last year and all I am good at is winding wool around a hook. 

This led to Mommy and I having a cry in the car while Daddy walked Christine to the station, then she climbed into the back seat to have a big hug, and eventually we were okay and we all came home. 

Tonight I have no interest in being me. 

The 26th of January. 

Back in the peaks and troughs of my emotional state, today has not been so bad. I think my face is a little bit deflated but my right arm is still boggy. This, I think, lends credence to my theory of the narrowing being back, just not fully blocking because my blood is so thin from all the clexane. 

This morning I gave Mommy and Daddy their 35th wedding anniversary card before she took him to the doctor for a blood test. It’s just for a check up, nothing of interest. I watched tv, wrote up a blog post and sewed together the body parts of an elephant without ears, eyes or a tail. We were just about to go out to M&S to buy some soup when Igor phoned. He is definitely in my top 10 doctors – he took my worries seriously and was going to get on the case with Andrew Willis and let Ram know what’s going on. I think I will just see him on Wednesday at clinic as it’s not urgent, but I need something doing. Hopefully venogram/plasty asap. 

This afternoon I’ve done the body and the head of a cat. When all my extra wool arrives, I can finish off at least two animals! They will be very cute.

The 6th of August.

Awake at three. Stayed in the dark just listening to podcasts and music because I didn’t want to aggravate my eyes any longer than necessary. We were out of the house by half eight to be at clinic early, but I still didn’t see Ram until eleven. I got the stitches round my line taken out though in the meantime so that should be more comfortable.

As soon as we were in Ram’s room, I just said “This is worst I can remember feeling without infection and as hard as I am trying to stay cheerful, every so often I really do just lose the will to live and I cannot carry on like this” and wept. Mommy explained all the things that are wrong (steroids causing exhaustion, constant coldness, physical muscle weakness, constant trembling, critically low self-esteem from moonface, then we have the fact that my skin still is raw and sore, and I’m now having a period every month despite not having taken the drug to induce them and this should not be happening, but my “emergency” appointment at the menopause clinic isn’t until the 2nd of September), I occasionally supplied information, then he looked at all my skin. I had calmed down by this point, and we talked. Rituximab has to be a very last resort as we can only apply for it once and I need to be proven to be exceptional, so we’re going to just have fortnightly photopheresis, come down on the steroids and hope it all just works, really. And from things he said, I remembered that there are other patients much worse off than me.

Left pharmacy with a massive list and went to town to get some presents and some lunch, then went back to the QE, picked up my prescription, then came home. Becky came round so we could discuss Alton Towers on Friday, I wrote up a blog post, and I’m getting this done before Bake Off!

My face is even more colourful, and tonight I’ve having lorazepam.

The 7th of August.

My first day of 40mg of pred for two weeks. Let’s see how this goes. Lorazepam last night really actually did some good, so I got up at maybe half past eight? Admittedly I wasn’t sleeping all the time until then but I was rested.

Mommy gave my hair a good wash, and I put a big old mask on my hair to try and give it a bit of a boost as I attacked it quite brutally with a hairbrush on Monday. And my Moleskine wedding planner for Becky’s wedding arrived!

I’ve done nothing of importance today because of it being a lorazepam day, and I’ve just found out little Margot Martini is almost definitely going to die. For fuck’s sake, she hasn’t even had a chance at life yet.

All I’ve done is wear cooling eye masks and watch shit on the box I didn’t need to remember. Kathryn, you are still here. Get more donors. This could’ve been prevented.

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