Following on

On Wednesday, I had my first post-operative appointment with my hand surgeon. I've been struggling with my afterthoughts and having regrets with hindsight lately, but my surgeon has been really lovely about everything.

When I had the dressings taken down, I was really worried, since I had no idea what to expect and what it would look like. The best news is that the ulcer is now gone, and the skin is closed. However, there is a lot of bone missing, and I won't get it back, however successful this operation is, and has been.

My recovery seems to have stalled a little - I'd thought that my gastrointestinal symptoms would ease, once I was off the antibiotics, but it seems like they're here to stay. I've been getting very bloated to the point where I look nearly pregnant, and things just don't feel right. For a while now, I've realised that milk doesn't agree with me, nor do fried, heavy foods. Generally, I snack lightly during the day and then have a small meal at dinner, which seems to suit me much better than my old diet.

I'm disappointed that my joint has been fused totally straight. On the morning of my operation, I'd asked my surgeon whether it'd be fused straight or bent, and he informed me that it would be slightly bent, as it would be the most functional. Now I've seen it, it's straight, if not slightly too straight and verging on hyperextended. The timescale with which we were working pre-operatively was so tight, that now I look back and have many regrets.

My mind and body are all-over-the-place right now. My Ehlers-Danlos is really rebelling since the operation, and I'm having quite a few mucosal bleeds since the effect of the platelet transfusions wore off. I'm seeing my haematologist in two weeks' time, so hopefully we can put a stop to the bleeding. This is most definitely not the most coherent post I've written, but it's difficult to put so many thoughts in writing when nothing's quite straight. Hopefully I'll be able to write again soon, with some better news. x

Overcomplicated

Have you ever felt that everything is overcomplicated? Or that people are out to complicate things for you?

I've never had to wait so long for a post-op appointment. I had my surgery on Friday, 7th June - and I still haven't got an appointment date. My surgeon spoke to me the day after my operation, Saturday, saying that he would see me "next week" - the week beginning that Monday - but we never arranged a day or time. The secretary, talking with whom feels like having my hairs plucked one by one, phoned me to say that she could only offer me an appointment in two weeks' time; tomorrow. I didn't kick up a fuss, since one week shouldn't make a huge difference.

Concerned about drug side-effects, pain and just not feeling myself, I phoned her to see if I could move the appointment forward. I spoke to her this Monday, and asked if I could get an appointment either on Tuesday or Wednesday. I booked an appointment for Wednesday, and hung up. I emailed her for confirmation, just in case, as her voice is hard to hear and understand. She emailed me back saying that the appointment had been moved further, to next Wednesday, instead of being brought forward, as I'd asked. My original slot had been taken.

Next week, I go on placement (meaning I can't attend clinic), which I was really looking forward to. Unfortunately, I won't be able to scrub into theatres and do things I wanted to do, because I won't have seen my surgeon and I don't want to reduce the dressing in case anything happens.

I wrote back, asking if there were any slots for the Wednesday just gone instead, and was told that the clinic was full, though she could overbook. I thought this was feasible, and agreed, as long as the surgeon was fine with it (which he has been, in the past). I never got a reply after after this, and contacted her again yesterday to check if I was on the list, and still heard nothing. All the other times I'd contacted her, she'd replied within the hour, if not sooner.

Finally, I received a reply this morning, saying that I was on the list for next Wednesday. What part of being on placement and unable to attend does she not get? She didn't answer my email before the clinic, and even when she did, she didn't answer my question. Surely it's just common courtesy to reply, even if she's been unable to overbook? I feel totally let down by the system - not only is it poor service, especially considering this is the private sector, but it's rude, and she doesn't seem interested in helping people at all.

What I experienced after this was something I shan't forget for a while still. I wrote back, telling her for a second time that I would be on placement and that next Wednesday wouldn't work for me. Her reply to me asked if I wanted to change the appointment. I couldn't believe I was seeing this; I had just told her I couldn't make it, and she just wrote back asking if I wanted to change. Wasn't it clear enough that I wanted to change the appointment? I can't think of many people that would say no!

Memory lane...

I don't know whether it's just me, but my brain associates certain sounds and smells with distinct episodes or events in my life. For example, the songs that I liked at a specific time will always remind me of that specific time - whether it's a good or bad memory.

This evening, my boyfriend and I were sharing music, and I came across an old album that was my absolute favourite back in April, 2010 - the time I was unexpectedly admitted to ITU post-operatively. Memories of those nights flooded back, and just made me realise how far I've come and how long it's been since all this began.

My journey with Ehlers-Danlos Syndrome began back in 2008, and my AVM first ruptured in 2009 - it's 2013 now, I've done three sets of public exams, changed schools, gone to university and bought a flat in that time. I feel like I've achieved so much, yet so little - as I strive to be like my peers, even though I know my starting point is very much further behind than theirs. Perhaps there's an element of denial, but I feel that determination and in a way, stubbornness dominates in this situation. I feel like I can't give in to my body, to my physical and to my mental limits; but sometimes, there's no other way than to surrender to your circumstances.

As for the infection, I left the hospital with the same two infections that I was admitted with, which makes my weeks in hospital feel in vain. I feel like I took time out of university, and relieved myself from normal societal duties pretty much for nothing. It would have put my mind more at ease to get rid of the infection first (and spending longer in hospital), rather than being rushed back to "normal life" with the infection remaining. That time of my life feels unfulfilled - especially since the post-discharge plan is not working at all and I feel the same (or worse) than I did pre-admission.

This week will be my last week at university before the Easter break - and I will be trying really hard to get my doctors to do something to help get rid of the infection so I can return from my break, healthier. My haematologist has told me that I should see him on the NHS rather than privately due to a better haemophilia clinic for back-up. I'm still waiting on my second appointment, which is frustrating because I can usually get one within a week or so, privately.

Anyway, enough reminiscing, remembering and regretting - I'm looking forward to the Easter break and hope that my orthopaedic surgeon can give me some answers, since my vascular surgeon is away. I'll write again soon, but for now - stay well and be happy! xxx

Start of new things

I know I haven't written for ages, and I can only attribute my online absence to the changes that have taken place in my life and the current circumstances. Now, I am a university student; a medical student, and I can't believe that I'm here!

So, I know that there must be some people around that want to know how I'm doing, medically. Lately, I have met a few new AVM friends, people with young children suffering from AVM and others who I've been lucky enough to meet "just because".

As for my own situation, I am trying to get referred to a different plastic surgeon nearer my university. The man I saw previously doesn't work too far from me, but I figured that I may as well find someone nearer since I didn't feel like I got on well with the previous guy. My orthopaedic surgeon is still doing things for me that I thought nobody ever would; suggesting things and doing things before I even ask. My vascular surgeon has taken a back seat, which doesn't really bother me - and in fact, works nicely since my orthopaedic surgeon has taken a step up. It means I don't have to miss too many lectures and practicals too!

My orthopaedic surgeon has fallen sick, however, and I am so worried about him! His secretary says that he's not sure if he'll be in clinic next week, after having missed this week. He must be quite ill if his illness means he must take more than a week off - I just hope that he gets better as soon as possible. My vascular surgeon has said that in the meantime, if I don't see my orthopaedic next week, that he will see me regularly until my orthopaedic is back. I am so lucky to have so many doctors who are willing to stand up and look after me when others aren't able to.

I have had numerous infections in the past month, but have also managed to maintain myself at a stable weight, although this takes much effort and preoccupies my mind all the time. I have been very busy with all-things-uni, though I know that this is only set to get worse, so I am trying to keep on top of everything while I know I still can.

There are so many more things that have happened since I last wrote, but there is no way I'll be able to fit it into a longer-than-average sized post! I break up for Christmas break on the 21st December, and I have no days off until then - now that I'm almost on top of all my work, I should be around more than I have been. Meanwhile, please take care and stay well!

Post-op week #1

Was back at the hospital to see my surgeon and my favourite nurses yesterday! It was really nice to be back with people who knew me and knew how to care for me. Trish did my dressing, and the plaster nurse, Glenn came to help with dressing choices too. We are still looking for a dressing that is very non-adherent but also has a very fine mesh so as to disallow any overgrowth of unwanted tissues. They are going to speak to tissue viability over the weekend and on Monday and I'm back there on Tuesday to see what they say and see whether they have any new ideas.

Still no news on the plastic surgeon though. I think I may have found the right person online but I obviously don't want to go and book anything because I could be as wrong as I could be right. My orthopaedic surgeon was supposed to text me last night about booking the appointment (as he'd forgotten the guy's name) but that never happened. Since he wants me to see this plastic surgeon next week, I hope he texts or calls me over the weekend so that I can book in to see the plastic surgeon and then my orthopaedic surgeon as he goes away next Saturday.

The wound has remained relatively similar but is filling up very quickly with the unwanted tissues - granulation tissue and proteins as well as fluids. I have continuously been sick since my surgery and I really have no idea why. It's proving difficult for me to keep my weight up because I've lost my appetite and am vomiting on top of that.

I have been on a huge shopping 'trip' this week, off the internet and am still waiting for my things to arrive. My parents have bought me two pairs of Ugg boots, a purse from Ted Baker and plenty of clothes and so I am super excited to get my parcels next week!

I am so desperate to see this plastic surgeon, especially with my orthopaedic surgeon going away at the end of next week. Hopefully when my orthopaedic surgeon writes the referral letter, he remembers to let me know the name of the guy so I can book my appointment. Otherwise I'll be back seeing my orthopaedic surgeon next week to demand his name! On second thoughts, I need to get a new prescription for my anaesthetics anyway...

Post-op day #5

I can't believe it's already been five days since surgery! I attended my BMI hospital today to see my surgeon, with much apprehension about their awful nurses, knowing that I would need my dressings done because I am just post-op. I was given the *worst* nurse; I'm surprised I didn't scream when I saw her. As my surgeon says, she's "old school" and wants to get jobs done ASAP, regardless of anything. I bit my tongue and decided to let her have a go even though I knew it wasn't a good time, being post-op.

She took a foot-long pair of plaster scissors and tried to cut my dressing, hacking through the bandages roughly. I told her to stop, but she just told me to let her get on. She then started to remove the dressings themselves with tweezers. I tried to get my other hand in and remove them myself, but as I moved away from the dressings table, her tweezers followed suit and she was adamant that she wanted to remove them.

Just as we were waiting for my surgeon to come, another nurse came to get something from the room. Later, evil nurse left and I was left with the nurse who had come in to get something, as if by telepathy (or magic!)! I was in so much pain and was bleeding my this point and trying so hard to hold things together. My surgeon came in, and awkward conversation ensued (with me half-in-tears...). After 30 minutes of discussion, we decided to try new dressings and my surgeon left, telling me to go and see him again post-dressings.

Later, my surgeon asked if I was alright and commented that I looked really upset earlier on. Embarrassingly, I burst into tears and explained the situation - he agreed that it wasn't right and we ended up laughing about it.

He isn't too happy about the state of things, I am already growing back dodgy tissue and we might have to repeat/revise the surgery. He has also referred me to a plastic surgeon and I should get a call about that tomorrow - he wants to see if I am a candidate for synthetic skin or cell culture which is a very exciting prospect for now. I should get an appointment next week depending on when and where he runs his clinics and I am seeing my orthopaedic surgeon again on the 7th September.

For now, I have been prescribed some marcaine/bupivacaine HCl (I think they're the same thing) for pain relief as the codeine has been making me vomit badly. He wants me to start building up my appetite again as I have lost some weight over the last week or so, which was part of the reason why I was kept longer in hospital than I should have been. I ended up leaving the hospital at 9pm but I'm pleased to have seen my surgeon today. Hopefully it's good news from here.

Day out

I've been bleeding every day this week, and have lost quite a fair bit of blood. More than ever before, I now feel like there's AVM left in my finger because the bleeding is always pulsatile. I would be worried about this if the only option was to maintain status quo, but this week, my surgeon should be consulting others from the plastics team to see if they can operate using a cross finger flap which was suggested in the past. If this is done, any AVM left will be removed. I'd forgotten to also ask him about performing a Z-plasty which has also been an option previously, but was never done. I will be sure to ask him about this on Friday when I next see him at the hospital. I am so nervous but excited also to find out whether I can have surgery, but the thought of declination of this chance kills all the hope I have. I'd rather be realistic than optimistic and I know that the chances of a "yes" are very, very slim indeed and I just want to be prepared for the disappointment rather than expect the excitement.

I went out with my best friend today - we went into Central London and did some shopping. I bought a couple of face cleansers and makeup removers, and a few bits and pieces for my makeup collection. It was a really, really nice day and I'm so pleased I could spend it with one of my favourite people. To top it off, I came home and another great, great friend of mine was online and so we chatted the evening away! I have so many best friends and am so lucky for this - people who I am close to not just through illness, but because  we have similar personalities, regardless of state of health.

My new contact lenses are really wonderful too. This is my second trial and my second pair on this trial and finally, I think I've found lenses which really work for me. I am very short sighted and have bad astigmatism too - I think my prescription is around -8.00 on each eye but I'm so glad they finally found lenses that are made in my prescription! Despite all the bleeds lately, I have totally been on cloud nine! I think about my friends and family every day and remember how lucky I am to have them around me to share everything with me! I hope this week is a good one for everyone - sending lots and lots of love to you!

On the way

I've only just come home and had a shower since I left this morning at around 10.30 to go to the hospital. I saw my vascular surgeon at 11am, then headed out into the city centre to see my orthopaedic surgeon for 2.20pm. As usual, he was late (ended up arriving at 3pm) and left at around six. Most of the time was spent waiting, but I can almost definitely say it was worth the time he spent explaining things to me.

He's still not too happy with my diet and food intake and wants me to see my GP about this and get all the bloods done to get a better picture of my health from that perspective. I asked about my surgery from September 2010 and told him that it was the one I thought worked out best, until someone smacked it with a stick at school (Chemistry demonstration... don't ask). I asked if something like that would potentially work again, to which he answered that it's a possibility but there's a lack of tissue to be used, unless we approached using a pedicle flap from the adjacent finger. He did say, however, that he would need to carry this out with a plastic surgeon and so he'll ask a colleague and get back to me (he wrote this down so I'm hopeful he won't forget). 

He suggested that in the near future I perhaps have some coagulation procedure done to obliterate any troublesome vessels - perhaps an alternative if the plastic surgeon declines to operate. I'm not sure whether it'll be a yes, given the complex past. My hopes rest on the fact that my diet and food intake are slowly improving and therefore there's a chance it'll work. I explained that I feel like I've got nothing to lose since we've maintained status quo since February 2011 and that even if it doesn't work, I want to know that I've tried something that I believed would help.

I had my dressing done by Trish, my favourite nurse, and she was so great! It feels like she's known me for so long already but it's only been a couple of months. I'm going on Wednesday again to see her so hopefully she'll be there. Overall, quite a good appointment despite lots of waiting. I arrived at 2, was eventually seen at 3, had my dressing done at 3.30 after speaking with my surgeon, waited some more for my surgeon to see his other patients, and saw him again at around 4.45, and finally left at 6pm alongside my surgeon even!!! Lots of waiting around but lots of time spent talking, asking and finding out new things. I'm excited at the prospect of new ideas for a cure but am also incredibly nervous that I'm not going to get this chance - which I know is a huge realistic possibility. Sorry it's been a long one but there's been a lot to think about - hope the weekend is a great one for you!

General update

So my next appointment is finally here and I'm really, really hoping that it's the one where I'll receive some sort of good news about what we can do about my AVM. The pain is becoming pretty unbearable as the days go by and the bleeding has failed to ease. In fact, it's become worse even though the open area itself hasn't changed - if anything, it's a little better but this advance is clouded out by the havoc the bleeding has caused (and is causing!).

I bought myself a white dress today - it's lacy and has a navy bow at the waist! I can't wait to wear it but have to wait till the weather is nice again because it's a summer dress! Also bought an orange hoodie (in a moment of madness!), a navy lace summer top and a navy/white striped t-shirt that I hope will go well with a skirt I recently bought. I'm going out again tomorrow to get some leggings and a lipgloss (I can't decide between Chanel and Lancome so we're going to Debenhams to have a proper look). 

Baked cupcakes again today, vanilla sponge but chocolate buttercream icing this time. I iced them using the standard 8-star swirl and didn't put any further decorations on because I thought they looked nice enough plain. My mother had bought me an electric mixer that has the bowl attached to it - I think these are the free-standing ones? I made a rosemary focaccia yesterday and it was really yummy! Didn't take a photo of it though because it was attacked before I had the chance!

I am anxious but look forward to my appointment tomorrow. I am so hopeful that I will get some news because I've been in this limbo for what seems like ages. Results come out a week from today and only then will I find out whether I've gotten into medical school or not. Fingers crossed it'll be a yes - good luck to everyone else receiving results next week and the week after too! 

In an emotionally good place

As much as I've been upset, frustrated and just down over the last few days or even weeks, I've had a good day today. Taken the whole day just to be lazy and do my own things, trying not to think about the "important" stuff and it's been good for me. Although I'm still anxious about things, I've had a relatively calm day. I had an awful night's sleep due to AVM pain, sleeping from 5am till 9am this morning so I'm quite tired today.

I don't feel well in myself though; I keep getting nauseous and am really losing my appetite. Additionally and unusually, I've been running a low grade fever all day today and woke up with a swollen face again. This has happened before and I don't know why, but I might go and see my vascular surgeon tomorrow just in case. I'm definitely seeing my orthopaedic surgeon on Friday but I'll think about that another time. I watched a few documentaries whilst in bed today and just had a nice day thinking about nice things; about all my friends and all the kind thoughts and actions which I have been at the receiving end of.

Despite feeling unwell, I've had a clear head today. The only thing that remains in my thoughts is desperation because I don't believe I will be ridden of the desperation until I wake up from the skin graft surgery and hear that it's been a success so far. I can't take this waiting when I know that university starts so soon and I can't do anything right now to stop the time slipping from my reach.

Hopefully next week is a good week. I'm excited but nervous for Friday most of all, but hopefully I can get in to see my surgeon tomorrow as I don't believe my swollen face is normal at all! Oh, and I also got the letter my dietitian sent to my surgeon... Not the most accurate representation of the appointment but then again I wasn't really expecting it to be. Hope the weekend's been great, thanks for reading x

Yesterday's bleed

Had a quiet day today: I went to town with my mother this morning and got a pair of high-waisted jeans from Topshop, a few tops and bought some cupcake ingredients. I decided to ice them as roses today (first time trying it out) as I had pink food colouring that I wanted to try out. They looked alright but I've yet to taste them - the sponge is vanilla as usual and it's a pink buttercream that I made myself.

I ended up emailing my orthopaedic surgeon as I had another horrendous bleed yesterday (no reply as of yet). On taking the dressing off, I saw a purple thread under the skin which I didn't really think much of, until it started bleeding from around that spot. It was then when I realised that the purple thread must have been a vessel.

I was, and still am surprised that I'm not feeling too bad from the bleed. I'm yet to change the dressing today but dreading it, as it's caked in blood which has since dried. It's stuck to the nail bed where there was once a nail, which is most definitely something that makes me cringe like nothing else. I will phone my surgeon's secretary on Monday and book an appointment for Friday - I'd like either the first or last appointment because he's late and overruns. Last week, there were three people before me and he arrived an hour late - by the time he got to me, he was two hours late as he'd gone "overtime" with his previous patients. Because he always sees me, takes me to the dressing/treatment area and then sees me again in the consulting room, the nurses reckon it'd be better to be admitted as a day patient!

Feeling anxious about the possibility of no surgery till I start university and for results day which is in a week and six days' time. I really want to see him before results day as I want to know what's going on and have some questions to ask him. Hoping for a good week until I see him, and wishing everyone a great week too!

Frustrated and annoyed

Surgery was supposed to take place in the middle of August. But it's not, now. I don't know if I'm frustrated and annoyed at the situation or at my surgeons. My orthopaedic surgeon has told me a couple of times about "the next step if [this] doesn't work" but the "next step" is always the same as the last and we never get anywhere. When I think about this, all I want to do is cry - I haven't been in this position for a long time, perhaps not for a year or even more than that. I am upset about their nonchalance, which I can sometimes understand, given that the problem is in my hand and is therefore not life-threatening. But the impact on my quality of life has been colossal since it started in October, 2009. I've sat three rounds of public exams, two entrance exams, three scholarship exams and done my university interviews all weaved between hospital appointments and day operations.

I am indeed very upset at the situation I'm left in. Apparently there's no significant AVM left, and as much as I want this "curative" surgery, I'll be reluctant because I know there's still some sort of abnormality in the tissue due to all the bleeding I'm getting. My next appointment is supposed to be on the 18th August, the time around which my surgeries were supposed to take place. I just hate how my hopes were raised just a few weeks ago and have once again been crushed without people realising. I'd have been better off without people giving me false hope in the first place. Still, I am very pleased with my surgeon and understand that things do change - it's all just a bit much for me and it's nobody's fault, I guess. They're doing their best already and I can't ask for more from them, I just wish my body would co-operate!

So, yesterday, I went shopping with my mother in the day time and in the evening we went to my father's other restaurant. I bought a floral bandeau top and a couple of vests but not much more. We also went for a coffee and I had a vanilla latte and we bought two huge biscuits too! But they're still downstairs, in a box! I am going out again tomorrow and hopefully will be baking red velvet cupcakes! I'm feeling lots better from the stomach bug but have no idea why it lasted nearly a whole week. Hope everyone's weekends have been wonderful, and thanks for being great readers!

Appointment thoughts

Back from the hospital and it didn't go as I'd hoped. My surgeon said that there may still be bits of AVM in my finger but that they're not significant enough to warrant any (more) treatment of any kind. The overgranulation has gotten worse (after an improvement last week) and so we're back to square zero again, so it seems - not even square one, because it's worse than that. Today he said to me that we'd taken "one step forward and two steps back" which is a real shame. He wants the next appointment to be in mid-August (three weeks today) but remember when he said that was when I'd have surgery?

So, I'm a worried JJ about university and about things. I've worked so hard to get the wound in a healthy state and suddenly we're here, and it's worse than before. This obviously means that surgery will be delayed but I want to write to my surgeon tomorrow and ask him a few questions. I don't understand why the granulation tissue can't be removed surgically and then for the new graft to be placed on top. At the moment, it's just hard for things to sink in - on top of that, I've had the sick bug pretty much all week! I'm feeling a bit better today though which is great, but I wish I had two pieces of good news to share!

I was at the hospital from 2pm till 5.30pm again today - most of the time was spent waiting for my surgeon to make his way through the Olympic-caused traffic in the city centre! He arrived at about 3.30pm and I saw him, had my dressings done, and then saw him again. I've been prescribed a new anaesthetic drug which I hope will be helpful at relieving the physical pain of my ulcerated goodness-knows-what (since it's not really AVM)!

I was watching the Olympic opening ceremony earlier, and although Daniel Craig's appearance is rather cheesy (among many other acts of cheesiness), I can't tell if I'm annoyed or shocked at Great Ormond Street's appearance. I would have thought that the hospital has enough recognition, both on a national and international scale, that this wondrous opportunity would be given to a lower-profiled charity. Don't get me wrong, because I know GOSH does some great stuff, but it just goes to show how many people are just swept under the rug that is the NHS. Sometimes, I overanalyse things, but if I were ten years older or younger than I am now, maybe I would get the treatment and help I need for a better quality of life. If I were little, people would see the injustice of a "suffering child" and as an adult, people would be more fearing and more willing to act - if I had a (respectable) job and family of my own, who knows where I'd be now.

Maybe this is self-pity, and if so, I apologise because it wasn't the intention. Once again, the cliché proves true: money cannot buy happiness, health and love.

Vascular clinic appointment

I totally forgot to write yesterday! I was trying to make this month a "blog-a-day" month, just for fun, but I've obviously failed this time. I was, and am ill with the sick bug - or at least something like the sick bug. I had to go to the optician this morning and almost couldn't leave the house, but we made it there and back! I received my parcel too, of medicines and the protein shakes that I've been told to drink. My mother bought me some tops today, four vests and two Disney t-shirts, which I absolutely love!

I have, however, lost two pounds again. I'm just totally overwhelmed at what has come of the dietitian appointment and don't know whether I can take it all on so quickly. I am seeing my orthopaedic surgeon on Friday again to let him know how the dietetics appointment went and to ask him a few further questions.

Yesterday, I had my appointment with my vascular surgeon. He said that it was normal for people to live with AVM cells present and despite it causing me problems, he declined to send me for any sort of scans. I guess it would just be nicer to know what's there, rather than dealing with something I know nothing about. However, we digressed from "medical talk" and proceeded to have a rather in-depth conversation about classical music... He wants to see me in a month's time, but there's only little chance that this will happen. He was telling me how wonderful the wounds looked, despite my orthopaedic surgeon telling me otherwise - furthermore, I can see for myself that the wounds are bigger and are bleeding more (but this is evidently no cause for concern...). While I very much appreciate his optimism, in a situation  like this, I'd be grateful for some realism too. It's not the best confidence boost when you feel rubbish and someone tells you that this is the best it's going to get for some time still!

I was very slightly upset after yesterday's appointment but I'm sure that with some encouragement from my orthopaedic surgeon, I'll be easily appeased and feel like I'm on track again. Hopefully the sick bug will be over with, but it'll definitely take its toll on my body. The weather, again, has been lovely, but I'm still yet to go out in my shorts and vest this summer! Don't think this "heatwave" is supposed to last very long, unfortunately!

Finger AVM bleed

I just had a huge bleed from my AVM! This is just a picture of the biggest clot that wouldn't even go down the plug hole in the bath. It was bleeding into some normal saline for about an hour and I could see the pulse - I videoed it only for a bit but don't know how to upload videos here. The space between the plug and the hole is about an inch, so that's how tall the clot it, it's much wider (maybe about three inches wide?). Comparatively, it's quite a big one but only because my blood doesn't usually clot this fast and it's just a big mess! My record still stands at around two litres of blood lost in two weeks back in March 2010.

But overall today I have had a good day and managed to recollect my feelings on this morning's post. I need to be more proactive in my treatment and be a part of the team rather than the subject of science. On my next appointment with my orthopaedic surgeon, I will ask to be referred to a rheumatologist and ask him what he thinks of the synthetic skin and thrombin (though I have tried this once before already). 

Tomorrow I am going to be receiving my parcel in the post at last. I've bought dressings, scissors and plastic syringes (sans needles) so I can use the topical anaesthetic more efficiently without wasting most of it. A 4ml vial costs me around £8 depending on which pharmacy I go to, and even more if I buy from the hospital chemist. I once paid over £40 for 20 Bayer Ciproxin tablets because my surgeon wrote down "Ciproxin" (the branded name) rather than "Ciprofloxacin" (the generic name). But I suppose if you go private, these are the things you put yourself up against! 

Anyway, I am feeling a bit tired from the AVM bleed and very slightly faint/dizzy. I lost around 250ml of blood today and although it's not a lot, I haven't drunk much either and so am just a tad off course! Hope you are all having a wonderful day and have had an enjoyable weekend!