Those who know me know that a couple of years ago, I had a serious needle phobia. The thought of needles used to make me feel faint, and I used to get so worked up before having a blood test that it made things worse than they were. I have gotten much better in the past year. Being on mercaptopurine means that I have to have blood tests every 2-4 weeks. I think I must have had nearly 100 blood tests in the past year alone. Needles no longer phase me as much as they used to. I still can't watch the nurses/phlebotomists/HCAs take my blood, but I can stand them now without feeling faint.
I was in the hospital on Saturday for my second colonoscopy in the past year. The result of the colonoscopy is the difference between better medication and staying on the medication I'm on. I had a cannula inserted into my arm and was fine until I looked at it. The blue dots and faintness of my previous needle experiences returned. I'm not sure if it was looking at the cannula or the blood that was under the bandage (the cap wasn't on properly).
Other than hardly remembering the procedure, it went quite well. I just hope the results are what I need for new medication.
Showing posts with label crohn's. Show all posts
Showing posts with label crohn's. Show all posts
Monday, 11 November 2013
Tuesday, 24 September 2013
What's it Like Being a Student with Chronic Pain?
Being in pain isn't fun. When you're young, you get days off school. That may look fun when it's not you, but you miss quite a lot. And when you get back after having a week or so off, everyone asks you where you've been. It gets annoying fast. But that's secondary school for you. My mum was always worried that social services would get called because I was always ill. I think the only fun thing about being ill at school was having a pass that allowed me to leave lessons 5 minutes early with a friend to assist me before break times to beat the rush of students so I wouldn't get jostled (the 'Get Out of Class Free' card as we called it).
By the time college came around, I'd learned to manage my pain and got 100% attendance, the first time since Year 1 probably (I had chronic tonsillitis so I was always off with sore throats, and then my knees and hips started off my arthritis time off in Year 2 or 3).
When looking at universities, I found the best thing to do was to talk to the disability advisor about what they could do for me and what I would have to do before I arrived, if I went to that university. They were very happy to help, and amazing listeners.
I was advised to apply for D.S.A. (Disabled Students' Allowance) on the grounds of my arthritis. I have to say that it has helped greatly knowing I had note takers available if I was unable to go to a lecture, and having timed breaks and extra time during an exam. I did receive timed breaks and extra time during my A Levels too, as was decided before I arrived at college. I had monthly meetings with the disability advisor at college, and similar meetings with my disability advisor at university.
My university tutors all know who I am. I notice that they look out for me whenever I walk into a lecture theatre.
It is difficult always being in pain. Though my friends look out for me, they do not understand my pain. They do try. Some days I look fine, though not so much on the inside. I walk slower than the rest of my friends, and I always feel like I am being left behind. My boyfriend usually slows down and waits for me while the rest continue on, but not always. Some days I do look ill; pale, dark circles under my eyes, even the way my voice sounds and how I walk. My mum says I waddle like a pregnant duck (thanks mother).
It's been nearly a year since I was diagnosed with Crohn's disease. The first few months before I was diagnosed were absolutely terrible. Luckily my education wasn't affected by this as it happened during my Placement Year. I was extremely worried that I would lose my place, but luckily I did not. It has, however, worried me about any future jobs I may acquire.
Pills, pills galore. I was taking 1000mg of ibuprofen three times a day every day during secondary school. I was allowed to visit the nurse to take them whenever I needed them, or if I just needed a break. I dread to think what that might have done to me. Then, when I first saw my rheumatologist, I was put on all sorts of medication. Methotrexate, hydroxychloroquine sulphate and azathioprine are a few that I have taken in my teenage years. Those ones have truly terrified me. My overnight bag that I take when I visit my boyfriend sounds like a baby's rattle with all the pills I have to take.
So, to answer the question of the title of this post, it is very difficult being a student with chronic pain. You have to keep on top of your lessons/lectures when you are not there to receive the education in person (one teacher even went as far as thinking that I was skipping his classes). Some teachers (head of house/year, your tutor etc.) really do want to help you, and it's these teachers that you've got to tell what's going on in your life and if you're falling behind. You have to recognise who to ask for help: teachers, parents, friends. Never be afraid or embarrassed to ask for help. People may expect a certain amount from you, especially if you have shown that you can do extraordinary things on your good days. I'm not saying to not always be extraordinary, but just be careful because they will end up expecting that when you are not so good (especially if you have hidden illnesses like myself; I would nearly always look well when I wasn't).
Don't let your pain rule you. I have always tried to soldier through my pain, and it will occasionally come to bite me in the bottom. The one thing I will always do is get out of bed; it's so easy to just stay in bed because it hurts to move, but once you get moving, things get better. The world is going to continue without you if you just stay in bed, so go out there and enjoy yourself. You may not be able to do much, and don't over-do it either or else the next day is going to be even harder, but try and do at least one thing each day (other than get out of bed). Call your friends, or meet up with them. Go to the park. Give your grandparents/parents a hug. Do anything that will get you out of bed. It helps.
By the time college came around, I'd learned to manage my pain and got 100% attendance, the first time since Year 1 probably (I had chronic tonsillitis so I was always off with sore throats, and then my knees and hips started off my arthritis time off in Year 2 or 3).
When looking at universities, I found the best thing to do was to talk to the disability advisor about what they could do for me and what I would have to do before I arrived, if I went to that university. They were very happy to help, and amazing listeners.
I was advised to apply for D.S.A. (Disabled Students' Allowance) on the grounds of my arthritis. I have to say that it has helped greatly knowing I had note takers available if I was unable to go to a lecture, and having timed breaks and extra time during an exam. I did receive timed breaks and extra time during my A Levels too, as was decided before I arrived at college. I had monthly meetings with the disability advisor at college, and similar meetings with my disability advisor at university.
My university tutors all know who I am. I notice that they look out for me whenever I walk into a lecture theatre.
It is difficult always being in pain. Though my friends look out for me, they do not understand my pain. They do try. Some days I look fine, though not so much on the inside. I walk slower than the rest of my friends, and I always feel like I am being left behind. My boyfriend usually slows down and waits for me while the rest continue on, but not always. Some days I do look ill; pale, dark circles under my eyes, even the way my voice sounds and how I walk. My mum says I waddle like a pregnant duck (thanks mother).
It's been nearly a year since I was diagnosed with Crohn's disease. The first few months before I was diagnosed were absolutely terrible. Luckily my education wasn't affected by this as it happened during my Placement Year. I was extremely worried that I would lose my place, but luckily I did not. It has, however, worried me about any future jobs I may acquire.
Pills, pills galore. I was taking 1000mg of ibuprofen three times a day every day during secondary school. I was allowed to visit the nurse to take them whenever I needed them, or if I just needed a break. I dread to think what that might have done to me. Then, when I first saw my rheumatologist, I was put on all sorts of medication. Methotrexate, hydroxychloroquine sulphate and azathioprine are a few that I have taken in my teenage years. Those ones have truly terrified me. My overnight bag that I take when I visit my boyfriend sounds like a baby's rattle with all the pills I have to take.
So, to answer the question of the title of this post, it is very difficult being a student with chronic pain. You have to keep on top of your lessons/lectures when you are not there to receive the education in person (one teacher even went as far as thinking that I was skipping his classes). Some teachers (head of house/year, your tutor etc.) really do want to help you, and it's these teachers that you've got to tell what's going on in your life and if you're falling behind. You have to recognise who to ask for help: teachers, parents, friends. Never be afraid or embarrassed to ask for help. People may expect a certain amount from you, especially if you have shown that you can do extraordinary things on your good days. I'm not saying to not always be extraordinary, but just be careful because they will end up expecting that when you are not so good (especially if you have hidden illnesses like myself; I would nearly always look well when I wasn't).
Don't let your pain rule you. I have always tried to soldier through my pain, and it will occasionally come to bite me in the bottom. The one thing I will always do is get out of bed; it's so easy to just stay in bed because it hurts to move, but once you get moving, things get better. The world is going to continue without you if you just stay in bed, so go out there and enjoy yourself. You may not be able to do much, and don't over-do it either or else the next day is going to be even harder, but try and do at least one thing each day (other than get out of bed). Call your friends, or meet up with them. Go to the park. Give your grandparents/parents a hug. Do anything that will get you out of bed. It helps.
Saturday, 22 June 2013
It's Supposed To Be A Good Thing, Right...
When your doctor tells you that you are too well to go onto a different, and possibly better, medication? That's what my gastroenterologist told me back in April, but I didn't feel well and still don't really. True, I haven't had any really bad flare up symptoms, but it's the annoying little ones that get me down. They're like small insects always buzzing around me.
My arthritis symptoms already cause me to have very little energy throughout that day, what with my immune system always fighting my joints and whatnot. I call it my background noise. I wouldn't know what life would be like without it. I rarely get an arthritis flare up anymore, which is really good. My physiotherapist tells me it's partially because my pain threshold has increased dramatically since I first saw her when I was 14.
I know people with Crohn's disease who are a lot worse off than I am in regards to symptoms. I send my love to you all. My worst pain at the moment is just severe stabbing pains in and around my abdomen. They happen frequently, and I'm sort of getting used to them now but they do stop me in my tracks when they occur. The most annoying symptom is having to rush to the toilet several times a day (sorry for any images this may have conjured).
My current medication is alright - I'm on 50mg of 6MP and 2g of Sulfasalazine - but I'd prefer not to have any sudden stabbing pains. I'm sure that if I wasn't on these medications that I would be a lot worse. That's what I've got to remember whenever I complain about my pains.
My arthritis symptoms already cause me to have very little energy throughout that day, what with my immune system always fighting my joints and whatnot. I call it my background noise. I wouldn't know what life would be like without it. I rarely get an arthritis flare up anymore, which is really good. My physiotherapist tells me it's partially because my pain threshold has increased dramatically since I first saw her when I was 14.
I know people with Crohn's disease who are a lot worse off than I am in regards to symptoms. I send my love to you all. My worst pain at the moment is just severe stabbing pains in and around my abdomen. They happen frequently, and I'm sort of getting used to them now but they do stop me in my tracks when they occur. The most annoying symptom is having to rush to the toilet several times a day (sorry for any images this may have conjured).
My current medication is alright - I'm on 50mg of 6MP and 2g of Sulfasalazine - but I'd prefer not to have any sudden stabbing pains. I'm sure that if I wasn't on these medications that I would be a lot worse. That's what I've got to remember whenever I complain about my pains.
Thursday, 18 April 2013
Wednesday Wonderings: Trains
I know today isn't Wednesday, but I was out the whole of yesterday and didn't get a chance to write a post.
I'm on the train. A lot. It feels like I'm on the train at least twice a week (partially because for the past 3 weeks I have had return journeys). I need an aisle seat for my arthritis and Crohn's - it makes things easier if I need to rush to the toilet or get up and stretch - so I always choose it as a preference when booking my tickets. One thing I do not get, though, is why one of the preferences while booking train tickets is to sit at a table. Having a table seat restricts your leg room and you are facing at least one other person. No one wants that. The only time having a table seat is good is when you have the whole table to yourself.
Rant over :)
Tuesday, 16 April 2013
Exciting Times
I got incredibly fed up with my gastroenterologist (as you may have noticed from an earlier post), so after talking it through with my parents and boyfriend, we have decided that it would be best for a second opinion. I saw my GP and he referred me to a clinic in London who my best friend's dad (who has had Crohn's for about 30 years) is under. My original appointment wasn't until the end of the month, but the hospital rang me and my doctor had referred me to the wrong clinic, and the next appointment available was tomorrow! So it looks like I'll be on the train home tonight, and the train to London tomorrow morning! Here's hoping that my second doctor is more helpful in the everything department.
Sunday, 17 March 2013
Medical Support
I've been with my gastroenterologist since I was diagnosed back in October. When I was first referred to him, he was brilliant. I had my colonoscopy quickly (unlike someone else I know who is currently on a waiting list, I had mine within a week of my first appointment). I had great faith in my doctor. The third time I saw him, back in December, things went a bit downhill. Most gastro docs don't like surgery; they see it as a last resort. Now, knowing that I have a mild case of crohn's disease and what I would call a manageable amount of pain, he was considering surgery. I'm still in my early twenties and only diagnosed two months beforehand. I didn't have the greatest faith in him after that visit. The last time I saw him was back in February (I see him every 6 weeks). Bearing in mind that I see him privately, have to catch a train from loughborough to Essex to see him and have a day off work, when he was over 30 minutes late and only saw me for 5 minutes telling me he couldn't do anything because he didn't have my latest blood test results (which is a lie because my healthcare assistant faxes them to his secretary) I lost all faith in him and I now feel like I am in this on my own. Don't get me wrong, I have my family to support me, but having someone who knows what they're doing and has knowledge in the area in which is causing you pain is a great gift and weight off your mind. I feel incredibly let down. Keeping in mind the fact that I see him privately, I'm meant to see him again next week, but he cancelled in the last minute and I can't see him now for another 3 weeks. So that's a train fare and day of work wasted.
Tuesday, 12 March 2013
Updates
I got some bad news on Friday. My best friend from secondary school died :(
We hadn't talked to each other since she had a go at me and called me some pretty nasty names at the end of college (just the thing you want before you head to university [/sarcasm]), but it still hit pretty hard. She was diagnosed with Crohn's about a year before I was. I don't know why she died, but apparently she had been in a lot of pain recently, so it could have been anything. She just didn't wake up that morning.
My boyfriend travelled up to me the next day (3 hour drive) even though he was going to spend the weekend with his mum with it being Mother's day and all.We spent the weekend together, and he even took Monday off to look after me. He was going to leave Monday night, but then the snow arrived. He was snowed in. So he had Tuesday off too. It wasn't a lot of snow, but with it being a 3 hour drive when the roads are clear, he didn't want to risk anything. Plus it took a colleague of his 3 hours to get from the office to his home, which is usually only a 20 minute drive down a motorway.
On a slightly different note, I haven't done any training this week for my 10km with my dad in May. I just haven't felt up to it. I think I'm having a Crohn's flare, which is not good for my training or work. However, I have done a lot in the past few weeks (approximately 82km since January) so I think I'm allowed a week off. The furthest I have walked so far is only 5km, but I'm getting there.
We hadn't talked to each other since she had a go at me and called me some pretty nasty names at the end of college (just the thing you want before you head to university [/sarcasm]), but it still hit pretty hard. She was diagnosed with Crohn's about a year before I was. I don't know why she died, but apparently she had been in a lot of pain recently, so it could have been anything. She just didn't wake up that morning.
My boyfriend travelled up to me the next day (3 hour drive) even though he was going to spend the weekend with his mum with it being Mother's day and all.We spent the weekend together, and he even took Monday off to look after me. He was going to leave Monday night, but then the snow arrived. He was snowed in. So he had Tuesday off too. It wasn't a lot of snow, but with it being a 3 hour drive when the roads are clear, he didn't want to risk anything. Plus it took a colleague of his 3 hours to get from the office to his home, which is usually only a 20 minute drive down a motorway.
On a slightly different note, I haven't done any training this week for my 10km with my dad in May. I just haven't felt up to it. I think I'm having a Crohn's flare, which is not good for my training or work. However, I have done a lot in the past few weeks (approximately 82km since January) so I think I'm allowed a week off. The furthest I have walked so far is only 5km, but I'm getting there.
Wednesday, 20 February 2013
Wednesday Wonderings: Processed Food
There has been a lot in the press recently about horse meat being in food that's meant to contain beef. I follow Daniel Hardcastle on Twitter, and he tweeted something rather funny about it:
Plus, this is probably a lot healthier too.
You know, the way this horse meat thing is going I bet we find out that cows don't actually exist.But the horse meat fiasco got me thinking, along with my two of my trigger foods being dairy and tomatoes, I can't actually eat many processed meals anymore (and I don't eat beef anyway). I used to eat lasagne, carbonara, pizza, all things you can just chuck in the microwave or oven for a couple of minutes. I'm really quite glad though because now I know exactly what is going in to my meals, and I have complete control over all of it. The only things I really miss are spinach and ricotta cannelloni and ravioli.
— Daniel Hardcastle (@DanNerdCubed) February 18, 2013
Plus, this is probably a lot healthier too.
Thursday, 7 February 2013
Chocolate
I am a huge chocoholic, but when I found out that dairy is one of my trigger foods for my Crohn's I was very upset. I tried life without chocolate, but I just couldn't live without it.
One weekend, when my boyfriend visited me, we went to Nottingham and enjoyed an afternoon there. We had lunch in a nice little tea house tucked away in the city centre, and on the way back to the car we nipped in to Hotel Chocolat. They were having a 3 for 2 on their Selections, so we bought some dark chocolate ones for me, and he had a white chocolate one. I have to say, they are the best dark chocolate I have ever had (70%). I have never been a fan of dark chocolate, but Hotel Chocolat has changed my views on it. I particularly like the chocolate covered hazelnuts.
I would definitely recommend their chocolate to anyone who loves milk chocolate, but has found that they can't have it anymore. Try a bit of everything, you'd be surprised at what you like and don't like.
One weekend, when my boyfriend visited me, we went to Nottingham and enjoyed an afternoon there. We had lunch in a nice little tea house tucked away in the city centre, and on the way back to the car we nipped in to Hotel Chocolat. They were having a 3 for 2 on their Selections, so we bought some dark chocolate ones for me, and he had a white chocolate one. I have to say, they are the best dark chocolate I have ever had (70%). I have never been a fan of dark chocolate, but Hotel Chocolat has changed my views on it. I particularly like the chocolate covered hazelnuts.
I would definitely recommend their chocolate to anyone who loves milk chocolate, but has found that they can't have it anymore. Try a bit of everything, you'd be surprised at what you like and don't like.
Sunday, 27 January 2013
Challenge Accepted
I set myself a challenge today - walk a 10km race.
I usually walk about 1km a day (I get a lift to work) so I'm 1/10 of the way there. I have until 11th May, so I reckon I can do it. I've just got to buy some proper trainers first.
I'll be walking for charity, F.O.R.T.H. and Crohn's and Colitis UK. If you would like to donate please use the button below or on the right side bar. Thank you.
I usually walk about 1km a day (I get a lift to work) so I'm 1/10 of the way there. I have until 11th May, so I reckon I can do it. I've just got to buy some proper trainers first.
I'll be walking for charity, F.O.R.T.H. and Crohn's and Colitis UK. If you would like to donate please use the button below or on the right side bar. Thank you.
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