Dear readers,
I apologise as it has been a very long time since I last posted! On Monday the 20th of September, I underwent Transsphenoidal surgery to remove the tumour causing my Cushing's. The week before that I was in Paris visiting my brother and his family to take my mind off things.
I'm happy to report that the surgery went well and I'm now back at home however it is just to beginning for me as recovery will be a long process.
I will attempt to post about the surgery over the next few days however it may take me a while as being on the computer is very tiring for me...
I just wanted to say thanks to all my family and friends who expressed their support during this scary time and hopefully I'll be back to my bloggin' self soon!
Sunday 26 September 2010
Saturday 11 September 2010
To blog or not to blog...
When I first started this blog my aim was to post everyday but I've come to realise that a) It's a bit time consuming!! and b) some days are best not to blog about...
Don't worry, it's not that the last few days have been terrible, it's just that they've been quite uneventful. Apart from the constant backache which I wake up with everyday, my headaches have also come back and I haven't had much energy. Hence, not a lot going on apart from the essentials.
I did have my usual CBT appointment on Friday though. In case you don't remember, I'm getting CBT to help me with my binge eating disorder which I developed alongside the Cushing's. It was an interesting appointment because it was the last one before my surgery and we won't be meeting again for another month. So we weighed me and talked a bit about how I felt about the surgery and brainstormed what eating meant to me. All these things are important because presumably if the surgery goes well and my hormones get sorted out, my appetite and metabolism should return to normal. I should also not suffer from as many mood swings and bouts of depression. I have been told that I can expect to lose weight but I don't want to be too optimistic and realise that I will still need to diet if I want to lose ALL the weight that I've put on. I'm being realistic, I don't expect to slim down over night but it will definitely be easier without my own body working against me! Even the doctor who diagnosed me, when I asked her about my diet and why I was having such a tough time losing weight (apart from that year in HK when I was eating less than 1200 calories and exercising 4hrs a day) said: "It's because you're fighting a losing battle!"
You see, it's not enough that Cushing's increases your appetite and messes up your satiety (sense of fullness) signals, it also affects your metabolism so that your body stores the maximum amount of fat. Basically, even a salad can be fattening, especially if you have sauce on it!
Don't worry, it's not that the last few days have been terrible, it's just that they've been quite uneventful. Apart from the constant backache which I wake up with everyday, my headaches have also come back and I haven't had much energy. Hence, not a lot going on apart from the essentials.
I did have my usual CBT appointment on Friday though. In case you don't remember, I'm getting CBT to help me with my binge eating disorder which I developed alongside the Cushing's. It was an interesting appointment because it was the last one before my surgery and we won't be meeting again for another month. So we weighed me and talked a bit about how I felt about the surgery and brainstormed what eating meant to me. All these things are important because presumably if the surgery goes well and my hormones get sorted out, my appetite and metabolism should return to normal. I should also not suffer from as many mood swings and bouts of depression. I have been told that I can expect to lose weight but I don't want to be too optimistic and realise that I will still need to diet if I want to lose ALL the weight that I've put on. I'm being realistic, I don't expect to slim down over night but it will definitely be easier without my own body working against me! Even the doctor who diagnosed me, when I asked her about my diet and why I was having such a tough time losing weight (apart from that year in HK when I was eating less than 1200 calories and exercising 4hrs a day) said: "It's because you're fighting a losing battle!"
You see, it's not enough that Cushing's increases your appetite and messes up your satiety (sense of fullness) signals, it also affects your metabolism so that your body stores the maximum amount of fat. Basically, even a salad can be fattening, especially if you have sauce on it!
Thursday 9 September 2010
Looks like America isn't the only one having problems with BP!
Well I had some slightly disturbing news at my appointment with the nurse this morning. Despite having doubled my medication dose in the last week, my BP (blood pressure) is still quite high. This is a worry because they are usually reluctant to operate if your BP is too high. So what should have been a routine 10 minute appointment turned into me being there for 45 minutes!!! We took about 10 readings and they were all over the place. I only got about 1 or 2 which were low enough....
The problem is that my Cushing's is why I developped high BP in the first place and it turns out that it's also the reason my meds are having trouble working. I swear, this disease just keeps on giving!
Anyways, I have another pill to take now on top of my BP medication which apparently is to facilitate it working. Doc says I don't need to come in for another check up before the surgery because they'll check me when I get admitted and I should be ok. He reckons once I'm there and have settled in the bed and relaxed a bit I should be fine. He better be right!! I've been waiting for this surgery for so long now.... And anyways, the longer I leave it the worse it'll get since it's the Cushing's which is giving me the high BP!!
The problem is that my Cushing's is why I developped high BP in the first place and it turns out that it's also the reason my meds are having trouble working. I swear, this disease just keeps on giving!
Anyways, I have another pill to take now on top of my BP medication which apparently is to facilitate it working. Doc says I don't need to come in for another check up before the surgery because they'll check me when I get admitted and I should be ok. He reckons once I'm there and have settled in the bed and relaxed a bit I should be fine. He better be right!! I've been waiting for this surgery for so long now.... And anyways, the longer I leave it the worse it'll get since it's the Cushing's which is giving me the high BP!!
Wednesday 8 September 2010
Taking it's Cushie toll
Tonight's post will be short because I had a fairly crummy day and mainly because I have a terrible headache!
The day started off as usual: up at 9, breakfast, shower and then checking my emails and watching the news on TV. I decided to go have lunch at Yo!Sushi and do my food shopping at the same time. Up to this point, apart form the usual backache everything was fine. But then it started: the hot flushes! I started sweating just by walking around the supermarket. It's such an annoying and embarrassing feeling. You start feeling dizzy and hot and your hair starts getting damp from all the sweat. You know everyone is looking at you, wondering if it's raining outside or what the hell is wrong with you! I had intended on walking around to pick up some other bits and bobs but I just couldn't handle it. Even though my skin wasn't that warm to the touch and it was definitely not hot outside, I just felt like I was burning up inside and most of all I was starting to get a headache. Just another day with Cushing's I guess....
I really hope that the surgery will help with all of this. It might not sound that bad to you but trust me, it's not as easy as it seems. I ended up cutting my outing short and simply coming home so that I could sit in front of my fan and cool off. Unfortunately things didn't improve and I spent the rest of the day on the sofa, feeling very fatigued and with a tension headache.
It is now just a bit after 8, I've taken some painkillers and will be heading off to bed! I'm sorry that this post has been so downbeat and short but that's life sometimes. You have some good days and some bad. Today was unfortunately not great but I have high hopes for tomorrow. I have an appointment to check my blood pressure which hopefully has gone down now that they've upped my medication, and then I'm meeting a family friend for lunch. I'm looking forward to it as she is a lady that has been very supportive. She really understands how I feel and has shown me a lot of empathy and kindness.
The day started off as usual: up at 9, breakfast, shower and then checking my emails and watching the news on TV. I decided to go have lunch at Yo!Sushi and do my food shopping at the same time. Up to this point, apart form the usual backache everything was fine. But then it started: the hot flushes! I started sweating just by walking around the supermarket. It's such an annoying and embarrassing feeling. You start feeling dizzy and hot and your hair starts getting damp from all the sweat. You know everyone is looking at you, wondering if it's raining outside or what the hell is wrong with you! I had intended on walking around to pick up some other bits and bobs but I just couldn't handle it. Even though my skin wasn't that warm to the touch and it was definitely not hot outside, I just felt like I was burning up inside and most of all I was starting to get a headache. Just another day with Cushing's I guess....
I really hope that the surgery will help with all of this. It might not sound that bad to you but trust me, it's not as easy as it seems. I ended up cutting my outing short and simply coming home so that I could sit in front of my fan and cool off. Unfortunately things didn't improve and I spent the rest of the day on the sofa, feeling very fatigued and with a tension headache.
It is now just a bit after 8, I've taken some painkillers and will be heading off to bed! I'm sorry that this post has been so downbeat and short but that's life sometimes. You have some good days and some bad. Today was unfortunately not great but I have high hopes for tomorrow. I have an appointment to check my blood pressure which hopefully has gone down now that they've upped my medication, and then I'm meeting a family friend for lunch. I'm looking forward to it as she is a lady that has been very supportive. She really understands how I feel and has shown me a lot of empathy and kindness.
Tuesday 7 September 2010
Part II: The saga continues...
How would you like your disease? Rare? Would you like some embarrassing symptoms on the side with that?
So here we go, Part II: how I finally got from being diagnosed with Cushing's Syndrome to Cushing's Disease. If you missed out on Part I, you can find it here. But let me start by reminding you that I was the one to bring up the suggestion of Cushing's to the head psychiatrist conducting my assessment at the Eating Disorders clinic. When I had mentioned my concerns to my GP, she had simply told me that I needed to diet or asked if I wanted to go on anti-depressants!
So the way it works in England is that when you go for any type of test, they only get back to you if the results are abnormal and this is usually done by post. But the letter you receive does not contain any more information apart from: We have received the results of your [...] test and they are abnormal. You do not need to worry however please book an appointment to see your doctor as soon as possible. Or something along those lines.
So here we go, Part II: how I finally got from being diagnosed with Cushing's Syndrome to Cushing's Disease. If you missed out on Part I, you can find it here. But let me start by reminding you that I was the one to bring up the suggestion of Cushing's to the head psychiatrist conducting my assessment at the Eating Disorders clinic. When I had mentioned my concerns to my GP, she had simply told me that I needed to diet or asked if I wanted to go on anti-depressants!
So the way it works in England is that when you go for any type of test, they only get back to you if the results are abnormal and this is usually done by post. But the letter you receive does not contain any more information apart from: We have received the results of your [...] test and they are abnormal. You do not need to worry however please book an appointment to see your doctor as soon as possible. Or something along those lines.
Monday 6 September 2010
Bonne nouvelle pour les Francophones
J'ai installe un nouveau "gadget" sur mon blog qui ce trouve dans la colonne de gauche. Il s'agit d'un traducteur Google. Je vous previens, il traduit mot pour mot donc ce n'est pas toujours parfait mais je pense que c'est deja pas mal! Il suffis de selectionner French et cliquer sur "Translate" et la page devrais ce raffraichir avec le text anglais traduit. Par contre, ca va "traduire" le text francais aussi donc je vous conseille de retourner a l'original si vous lisez les posts francais.
Sunday 5 September 2010
It's the taking part that counts!
We've done it! And I do mean WE, because even though I was the one walking today, it was all your encouragement and support that motivated me through it! This year was tougher than last year as Cushing's takes its toll on me, but I still managed to complete the whole 5K in just over an hour. Not a record breaking time but nevertheless, it's the taking part that counts.
I think the Pituitary Foundation will be very grateful for your donations as we raised an amazing £1420!!!! For those of you who are reading and haven't donated yet, you still can as the page will remain open for some time. I wanted to do this because it is also about raising awareness and not just for the one off event. Charities like the Pituitary Foundation can only provide help and support thanks to donations and individuals who are willing to volunteer.
So give yourselves a big pat on the back knowing that you contributed to a very worthy cause, and I will be indulging in a nice warm bubble bath and resting my aching feet!
C'est grace a tout vos mots d'encouragement que j'ai pu finir le parcourt et je pense que la Pituitary Foundation va bien apprecier notre totale de £1420!!!! Pour ceux d'etre vous qui lisent ce post mais n'ont pas encore donne, vous avez toujours le temps car la page web restera ouverte pendent un certain temps.
Donc soyez fier de vous meme, je sais que moi je le suis! Ce soir c'est bain chaud et une bonne nuit de sommeil!
Thank you again!
Merci encore!
Saturday 4 September 2010
It's nearly race day!
I started writing Part II of my diagnosis story but again, it is a long post even though I'm trying to be as concise as possible!! I've now just looked at the time and seen that it is already 22:10 and I really should be heading to bed now because it's the big day tomorrow...
So I'm going to keep this short and sweet. Thank you to everyone who's already donated and to those of you who haven't, you still have time, the page will remain open even after the event, because this isn't just about a one off thing. It's about raising awareness too! And also because charities need money all year round in order to be able to provide their much needed services.
I will make sure I take my camera with me tomorrow so that hopefully tomorrow night's post can contain the day's highlights.
Demain c'est la grand jour!! Je tache d'ammener ma camera pour pouvoir prendre des photos que j'espere afficher demain soir. Pour ceux d'entre vous qui ont deja donne, merci beaucoup! Si vous ne l'avez pas encore fait, ne vous inquitez pas car la page va rester ouverte pendent quelque temp meme apres la course car ce n'est pas just pour un "one off"! Les oeuvres charitatives ont besoin d'argent tout au long de l'annee pour pouvoir offrir leurs services a tous ceux qui en on besoin.
Wish me luck
So I'm going to keep this short and sweet. Thank you to everyone who's already donated and to those of you who haven't, you still have time, the page will remain open even after the event, because this isn't just about a one off thing. It's about raising awareness too! And also because charities need money all year round in order to be able to provide their much needed services.
I will make sure I take my camera with me tomorrow so that hopefully tomorrow night's post can contain the day's highlights.
Demain c'est la grand jour!! Je tache d'ammener ma camera pour pouvoir prendre des photos que j'espere afficher demain soir. Pour ceux d'entre vous qui ont deja donne, merci beaucoup! Si vous ne l'avez pas encore fait, ne vous inquitez pas car la page va rester ouverte pendent quelque temp meme apres la course car ce n'est pas just pour un "one off"! Les oeuvres charitatives ont besoin d'argent tout au long de l'annee pour pouvoir offrir leurs services a tous ceux qui en on besoin.
Friday 3 September 2010
Not quite ready for Part II
Apres les efforts de hier et aujourd'hui, je n'ai pas le courage de poster quelque chose de trop long ce soir, par contre j'ai ajouter un slideshow de l'evolution de mon Cushing's a travers des photos. Pour ceux d'entre vous qui me connaisse depuis longtemps vous n'avais peut etre pas besoin d'etre rappele a quel point cette maladie a affecte mon physique (et par consequence le mental). Et pour ceux qui me connaisse seulement depuis que je suis en surpoids, vous serez surpris de voir comme j'ete mince avant!
I had a pretty eventful day today and I'm feeling very tired so I won't be posting anything of substance tonight. I will detail today's events in tomorrow's big blog post, the second part to my Cushing's journey because it ties in well with the whole "theme".
However tonight I have added a new "gadget" to my blog, a slideshow of some photos of me. You can see them in the right side column of the blog.
As you can see they depict me and the evolution of the Cushing's is quite dramatic and obvious. I think especially for those of you who have only known me during certain periods of my life e.g. since I've been overweight, you might be surprised to see how slim I was before!
I went from being an average sized teenager to a severely overweight woman and that has had a profound effect on my self-esteem and body image....
I had a pretty eventful day today and I'm feeling very tired so I won't be posting anything of substance tonight. I will detail today's events in tomorrow's big blog post, the second part to my Cushing's journey because it ties in well with the whole "theme".
However tonight I have added a new "gadget" to my blog, a slideshow of some photos of me. You can see them in the right side column of the blog.
As you can see they depict me and the evolution of the Cushing's is quite dramatic and obvious. I think especially for those of you who have only known me during certain periods of my life e.g. since I've been overweight, you might be surprised to see how slim I was before!
I went from being an average sized teenager to a severely overweight woman and that has had a profound effect on my self-esteem and body image....
Thursday 2 September 2010
Ce soir je blog en Francais!
Today's post is in French! Since yesterday's was so long, I'm giving you some time to digest... Fear not my english speaking friends, I will be back tomorrow.
J'ai decide de poster en Francais ce soir mais je tiens a m'excusee d'avance pour les fautes d'orthographe, de grammaire et l'utilisation occasionelle de quelques mots Anglais. Malgre le fait que le francais est ma langue maternelle, j'ai quitte l'ecole francaise a la fin de ma 4eme et ca fais maintenant 10 ans que j'habite en Angleterre! Apart un coup de fil par semaine a mes parents et les quelques vacances que je passe en France chaque annee, je n'ai vraiment pas l'occasion de pratiquer mon francais! Mais bon, j'espere que vous etes d'accord avec moi que ce qui compte est le contenu et non pas la forme. Vous avez aussi surement remarque que je n'utilise pas d'accent ou de cedille. Ca par contre c'est parce que j'utilise un clavier QWERTY. :)
Cliquez sur "See the full post"
J'ai decide de poster en Francais ce soir mais je tiens a m'excusee d'avance pour les fautes d'orthographe, de grammaire et l'utilisation occasionelle de quelques mots Anglais. Malgre le fait que le francais est ma langue maternelle, j'ai quitte l'ecole francaise a la fin de ma 4eme et ca fais maintenant 10 ans que j'habite en Angleterre! Apart un coup de fil par semaine a mes parents et les quelques vacances que je passe en France chaque annee, je n'ai vraiment pas l'occasion de pratiquer mon francais! Mais bon, j'espere que vous etes d'accord avec moi que ce qui compte est le contenu et non pas la forme. Vous avez aussi surement remarque que je n'utilise pas d'accent ou de cedille. Ca par contre c'est parce que j'utilise un clavier QWERTY. :)
Cliquez sur "See the full post"
Wednesday 1 September 2010
The journey to Cushing's Syndrome...
This morning I was up at 6am because of serious heartburn, an aching back and an unquenchable thirst! I thought to myself: On no, it's gonna be one of those days again...
But I was wrong!
I turned on the computer, checked my emails, facebook and charity donation page and what I saw put a huge smile on my face! I had received several really encouraging, positive emails and messages and I'd already exceeded my target. Consequently I've raised it however I am SO proud of how generous all my friends and family have been!! But what has really touched me is the positive messages. When I was creating the page and thinking about starting a blog, I was really nervous and unsure about it. Part of me was reluctant to open up and tell everyone my story because to be honest I think part of me is a bit embarrassed. I know I have nothing to be ashamed about because it's not my fault that I have a tumour, but self disclosure is never an easy thing. And let's be honest, the symptoms of Cushing's aren't exactly "attractive"! In fact, this disease has brought on a lot of insecurities for me and destroyed a lot of my self esteem. Being overweight in an image conscious society is never an easy thing, even when you know that it's not entirely your fault! I'm happy to say that I am now finally able to not let it get to me as much, but no one is completely immune to the hurtfulness of disapproving looks... I know that when people look at me, they're probably thinking that I'm just lazy and greedy. To be completely honest, even I used to think that only lazy, overindulgent people gained weight! How wrong I was... Thankfully I'm older and wiser now! So all these positive messages have pushed to me to tackle the big one:
This post is about what has happened in the last 7 years and how I got diagnosed with Cushing's Syndrome!
But I was wrong!
I turned on the computer, checked my emails, facebook and charity donation page and what I saw put a huge smile on my face! I had received several really encouraging, positive emails and messages and I'd already exceeded my target. Consequently I've raised it however I am SO proud of how generous all my friends and family have been!! But what has really touched me is the positive messages. When I was creating the page and thinking about starting a blog, I was really nervous and unsure about it. Part of me was reluctant to open up and tell everyone my story because to be honest I think part of me is a bit embarrassed. I know I have nothing to be ashamed about because it's not my fault that I have a tumour, but self disclosure is never an easy thing. And let's be honest, the symptoms of Cushing's aren't exactly "attractive"! In fact, this disease has brought on a lot of insecurities for me and destroyed a lot of my self esteem. Being overweight in an image conscious society is never an easy thing, even when you know that it's not entirely your fault! I'm happy to say that I am now finally able to not let it get to me as much, but no one is completely immune to the hurtfulness of disapproving looks... I know that when people look at me, they're probably thinking that I'm just lazy and greedy. To be completely honest, even I used to think that only lazy, overindulgent people gained weight! How wrong I was... Thankfully I'm older and wiser now! So all these positive messages have pushed to me to tackle the big one:
This post is about what has happened in the last 7 years and how I got diagnosed with Cushing's Syndrome!
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