People can be so deceiving and foolish. Because I am relatively young, people think that it's acceptable to play up on me and scare me, taking advantage of the fact that I feel bad easily. Today, I experienced a really terribly set-up case of emotional blackmail and am unfortunately just sat here grinning at my laptop rather than feeling the emotions that I was set up to feel. Immediately, I saw obvious flaws in what was being said and once I figured things out, I just gave up altogether and my doubts all became my beliefs (or disbeliefs!). I'm just at a loss, but it's not a bad one - just feeling slightly smug right here, right now. Obviously the smugness is tinged with anger, but nonetheless I'm not complaining.
Today, I seem to have taken a couple of steps backwards, health-wise. I have an infection, and if it doesn't keep itself contained, the infection will spread to the bone and I don't know what nastiness will ensue if that happens. I am back at the hospital tomorrow to see my surgeon and have my dressings redone by the nice nurses at my usual hospital. I have had more nausea and sickness than yesterday, but not nearly as much as I had a few days ago. I have stopped taking the codeine and am now on just ibuprofen and using Bupivacaine HCl for the pain on the wound at dressing changes.
No news as of yet about the plastic surgeon but hopefully I will be able to book my appointment tomorrow after my visit to the hospital, if not on Monday. There is a possibility of more surgery in the near future if my wounds don't start behaving and if the proteins and overgranulation don't recede. At current, they seem to be getting ever bigger and the cavity is filling up quickly. In my last surgery, my wound was debrided right down to tendon and bone which is the primary reason why infection at this stage would be bad news. Despite being far from ideal though, the granulation tissue is at least creating space between the bone and the infection, or at least that's what I think.
Anyway, despite the slight deterioration in the state of me, I've had a wonderful day! Hope you have too!
Sharing the ups and downs of life as a twenty-something year old medic. I have Ehlers-Danlos Syndrome, postural tachycardia, persistent hypotension, a platelet function defect, gastroparesis and intestinal dysmotility, and am overcoming AVM and osteomyelitis. I am also TPN-dependent. Follow the rest of my journey at www.nogutfeelings.blogspot.co.uk
Friday 31 August 2012
Wednesday 29 August 2012
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.
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.
Tuesday 28 August 2012
Surgery, 24th August 2012
I went into hospital on Friday, 24th August at around 1pm for the afternoon theatre list. My theatre slot was actually booked for 6pm but I had to arrive early for the usual proceedings to take place. I was allocated my room on the orthopaedic ward and was seen by my surgeon at around 5pm, as he had just come from the usual clinic that I attend as an outpatient. He explained all that he would do, and it turned out that the surgery was due to be a bigger one than I had expected. He would perform a total debridement and remove what tissue was left, and proceed to electrocoagulate the vessels that were still causing problems.
I spent a total of two hours in theatre, excluding the prep time, and all I can say is that the experience was one on the traumatic side. At times, I felt like they were treating me as an asleep patient and at other times they spoke to me like I were an infant. People were telling me that "this is normal" and stroking my hair and all sorts, when they knew full well that this was my thirteenth surgery and I wasn't really scared. Prior to my surgeon beginning the actual operation, it took five nurses to remove my dressings, one of whom decided to cut it off on the side of the wound, thereby pressing the scissors right into it. The surgeon had already infiltrated the area with lignocaine and was later going to use a long acting agent, prilocaine, I believe.
Anyway, so after the havoc that was removing the dressings, he began the surgery by applying a tourniquet and stopping the initial bleeding that was caused by the dressing's removal. In total, I believe he used around 100ml of anaesthetic, but it certainly looked like more when I looked over at the swollen mass that was my hand! So he began, using all sorts of knives, needles and scraping utensils, to remove "stuff". I don't really know how much he removed as I haven't seen the wound since pre-op. Two hours of cutting and scraping ensued, ending with a few minutes of electrocoagulation, by which point the anaesthetic was wearing off, resulting in a few mishaps as I flinched and couldn't keep still due to the onset of pain.
So I went back up to the ward, at around 8pm and was told that as long as I ate, drank and passed urine, I could go home. I was exhausted, however, and just wanted to rest. I was dehydrated already, as I hadn't eaten since lunch time on Thursday (the day before) but I was so run down that all I wanted to do was hide away. I can't say that the hospital did the best job at looking after me, for many reasons, but I'll go into that another time. Before I'd eaten, drunk or passed urine though, they were already telling me to leave the next day at around 2pm. Of course I wanted to go home, but home was an hour away on public transport but nonetheless I left anyway. I am doubtful that it was the right decision, as I have not been well at all since.
It has also come to my attention that people who I thought were my friends, are not my true friends and instead are egoistic, self-centred individuals instead. People who talk to me with the sole intention of telling me things and who aren't ready to listen and people who think that they are dealt the worst cards in life, all the time. I am so lucky, however, to have a few very, very close friends who are wonderful to me and I just hope I succeed in being as good to them as they are to me. Sorry it's been an extremely long post, but the last few days have been equally as long, if not longer. Love and hugs to all xxx
I spent a total of two hours in theatre, excluding the prep time, and all I can say is that the experience was one on the traumatic side. At times, I felt like they were treating me as an asleep patient and at other times they spoke to me like I were an infant. People were telling me that "this is normal" and stroking my hair and all sorts, when they knew full well that this was my thirteenth surgery and I wasn't really scared. Prior to my surgeon beginning the actual operation, it took five nurses to remove my dressings, one of whom decided to cut it off on the side of the wound, thereby pressing the scissors right into it. The surgeon had already infiltrated the area with lignocaine and was later going to use a long acting agent, prilocaine, I believe.
Anyway, so after the havoc that was removing the dressings, he began the surgery by applying a tourniquet and stopping the initial bleeding that was caused by the dressing's removal. In total, I believe he used around 100ml of anaesthetic, but it certainly looked like more when I looked over at the swollen mass that was my hand! So he began, using all sorts of knives, needles and scraping utensils, to remove "stuff". I don't really know how much he removed as I haven't seen the wound since pre-op. Two hours of cutting and scraping ensued, ending with a few minutes of electrocoagulation, by which point the anaesthetic was wearing off, resulting in a few mishaps as I flinched and couldn't keep still due to the onset of pain.
So I went back up to the ward, at around 8pm and was told that as long as I ate, drank and passed urine, I could go home. I was exhausted, however, and just wanted to rest. I was dehydrated already, as I hadn't eaten since lunch time on Thursday (the day before) but I was so run down that all I wanted to do was hide away. I can't say that the hospital did the best job at looking after me, for many reasons, but I'll go into that another time. Before I'd eaten, drunk or passed urine though, they were already telling me to leave the next day at around 2pm. Of course I wanted to go home, but home was an hour away on public transport but nonetheless I left anyway. I am doubtful that it was the right decision, as I have not been well at all since.
It has also come to my attention that people who I thought were my friends, are not my true friends and instead are egoistic, self-centred individuals instead. People who talk to me with the sole intention of telling me things and who aren't ready to listen and people who think that they are dealt the worst cards in life, all the time. I am so lucky, however, to have a few very, very close friends who are wonderful to me and I just hope I succeed in being as good to them as they are to me. Sorry it's been an extremely long post, but the last few days have been equally as long, if not longer. Love and hugs to all xxx
Friday 24 August 2012
In hospital and not feeling good
Will write properly when I'm doing better, lots of love and hugs to all x
Sunday 19 August 2012
Big(ish) update!
I got into medical school, as of Thursday! I am SO excited to begin the journey that should take me to a doctor! Though I've decided that maybe I'd prefer to do medical law, but we'll have to see when the time comes since it'll be in five years time at least.
For my "good results", my father has just bought me a MacBook Air! I'm so so happy with it but I still feel like it's much more than I deserve. I will also be getting a new pair of Uggs and Converses in the near future so I am really excited for that too.
On another note, I was at the hospital on Friday and had a chance encounter with a violent and aggressive patient who was aggravated over the lack of receptionist at the desk when he arrived in the department. Even my surgeon was vexed by the man's behaviour which is unusual since my surgeon seems to have the patience of a saint! I am being admitted next week for some surgical procedure or other and will have to call his secretary tomorrow to find out details and ask where I need to go since my surgeon runs theatre lists both in Harley Street as well as Greater London.
I have had some terrible bleeding lately which is the main reason why I haven't been updating as regularly as I want to be. I am getting some bloods done too next week, as I can't get in to my GP for the next three weeks so we will pay privately to have them done when I am admitted next week. I also realised a few days ago that someone has been giving my insurance policy number to their hospital for treatment as I am receiving phantom bills from hospitals and consultants unknown to me... Once again, I have a case on my hands that has come about through no fault of my own and needs sorting. Similarly, but thankfully, my issue with the other private clinic I attended has been sorted. They decided to freeze my account to investigate matters and then adjusted my payments and informed me that things had been wrongly billed. This is still no excuse for their pathetic letter, waffling through reasons why they billed me for wrong things, despite having been told by the nurse himself that I was wrongly billed for monetary reasons!
I have already met a couple of people going to the same medical school as me and I am so excited to attend some of the Freshers' events with them. I'm glad that I have met people beforehand as I would otherwise be more apprehensive than I already am to go to uni!
Anyway sorry for the super long post but I haven't updated in a long time and thought I should! I hope you've all had a gorgeous weekend, just like I have. Lots and lots of love to you all :)
For my "good results", my father has just bought me a MacBook Air! I'm so so happy with it but I still feel like it's much more than I deserve. I will also be getting a new pair of Uggs and Converses in the near future so I am really excited for that too.
On another note, I was at the hospital on Friday and had a chance encounter with a violent and aggressive patient who was aggravated over the lack of receptionist at the desk when he arrived in the department. Even my surgeon was vexed by the man's behaviour which is unusual since my surgeon seems to have the patience of a saint! I am being admitted next week for some surgical procedure or other and will have to call his secretary tomorrow to find out details and ask where I need to go since my surgeon runs theatre lists both in Harley Street as well as Greater London.
I have had some terrible bleeding lately which is the main reason why I haven't been updating as regularly as I want to be. I am getting some bloods done too next week, as I can't get in to my GP for the next three weeks so we will pay privately to have them done when I am admitted next week. I also realised a few days ago that someone has been giving my insurance policy number to their hospital for treatment as I am receiving phantom bills from hospitals and consultants unknown to me... Once again, I have a case on my hands that has come about through no fault of my own and needs sorting. Similarly, but thankfully, my issue with the other private clinic I attended has been sorted. They decided to freeze my account to investigate matters and then adjusted my payments and informed me that things had been wrongly billed. This is still no excuse for their pathetic letter, waffling through reasons why they billed me for wrong things, despite having been told by the nurse himself that I was wrongly billed for monetary reasons!
I have already met a couple of people going to the same medical school as me and I am so excited to attend some of the Freshers' events with them. I'm glad that I have met people beforehand as I would otherwise be more apprehensive than I already am to go to uni!
Anyway sorry for the super long post but I haven't updated in a long time and thought I should! I hope you've all had a gorgeous weekend, just like I have. Lots and lots of love to you all :)
Tuesday 14 August 2012
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!
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!
Friday 10 August 2012
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!
Thursday 9 August 2012
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!
Sunday 5 August 2012
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
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
Saturday 4 August 2012
Living with Ehlers-Danlos Syndrome and Arteriovenous Malformation
Two years ago today, I was supposed to have surgery. I was supposed to have a free skin flap and a few skin grafts to totally reconstruct my finger, but unfortunately, the surgery was cancelled at last minute. There were to be two surgeons working together, the vascular and upper limb orthopaedic surgeon I still see to date. The orthopaedic surgeon had, for some reason, disappeared off somewhere and nobody knew where he was or why he'd gone away. So, surgery was postponed to 3rd September, 2010...
Aptly, I wanted to write about the difficulties of Ehlers-Danlos Syndrome and having an AVM. Each affects the other, and I can't say it's in a positive way most of the time. When I lose blood from the AVM, it makes me feel weaker than I usually am, and when my EDS plays up, my joints swell and those in my hand swell even more due to the big fluid buildup I already have. The two together have so much potential to knock me out altogether if they decide to deteriorate quickly, albeit for a short time.
In the last three years of my life, though, I've learnt so much. So much good and bad stuff that I can't really say whether the experience has been "worth it" even though I didn't and still don't have a say in what happens. I've definitely met some of my best friends through my experience, people who are so creditable and respectable who I wouldn't have met otherwise. Some of these people will be my best friends for life and are people I can share absolutely everything with. People I don't know have helped me and been so kind to me indiscriminately. It's not all been pretty though; I've lost friends and I realised things about some people that I wouldn't have otherwise but I suppose that's for the better anyway.
I'm scared, though. Scared that my AVM won't be sorted before university (which is really real...) or worse still, it won't be sorted at all, although I doubt that this will happen. I've got so much faith in my orthopaedic surgeon at the moment that he's going to be the one to sort it all out for me and I just want him to give me the chance to believe in him and the chance to let himself make me better. He doesn't think I have any more AVM but I feel otherwise. But I'm going to take his advice and go through what he thinks is best, and if not, we can rethink. I'm just running out of time, patience and energy!
Aptly, I wanted to write about the difficulties of Ehlers-Danlos Syndrome and having an AVM. Each affects the other, and I can't say it's in a positive way most of the time. When I lose blood from the AVM, it makes me feel weaker than I usually am, and when my EDS plays up, my joints swell and those in my hand swell even more due to the big fluid buildup I already have. The two together have so much potential to knock me out altogether if they decide to deteriorate quickly, albeit for a short time.
In the last three years of my life, though, I've learnt so much. So much good and bad stuff that I can't really say whether the experience has been "worth it" even though I didn't and still don't have a say in what happens. I've definitely met some of my best friends through my experience, people who are so creditable and respectable who I wouldn't have met otherwise. Some of these people will be my best friends for life and are people I can share absolutely everything with. People I don't know have helped me and been so kind to me indiscriminately. It's not all been pretty though; I've lost friends and I realised things about some people that I wouldn't have otherwise but I suppose that's for the better anyway.
I'm scared, though. Scared that my AVM won't be sorted before university (which is really real...) or worse still, it won't be sorted at all, although I doubt that this will happen. I've got so much faith in my orthopaedic surgeon at the moment that he's going to be the one to sort it all out for me and I just want him to give me the chance to believe in him and the chance to let himself make me better. He doesn't think I have any more AVM but I feel otherwise. But I'm going to take his advice and go through what he thinks is best, and if not, we can rethink. I'm just running out of time, patience and energy!
Friday 3 August 2012
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!
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