It's less than a week now until I can eat again, which is exciting. It feels like an achievement - I love food, and going eight weeks without it? I didn't know I had it in me, to be honest. Heading back to food feels a lot like heading back to normal, heading back to the ability to leave the house on the weekends and go out for tea and spend summer between the beach and the frozen yoghurt shops. It's not a healthy attitude, but for me food and enjoyment have always been almost inextricably linked and this has been one of the most difficult things I have ever had to do.
That in mind, it's hard to be all that excited when I'm currently working through my preliminary exams. They shouldn't be hard and they shouldn't be stressful and I know, I've been told, people keep telling me not to worry because it's only year eleven and I promise, I understand that. I understand it but it doesn't stop the pressure I put on myself; the pressure to be the person that is pushing through and doing well in spite of everything else. And the truth is, I could have things so much worse and I can't let this stand in the way of doing okay. I'm not allowing myself the same level of stress and preparation I would normally, but I can't just hole up (however much I might feel like it) and not work because I want to show everyone what I'm capable of and I want to be happy with what I achieve, considering the circumstances.
The circumstances aren't great at the moment. For a while, things were looking up. The periods between pain and normalcy were shorter and generally, I was feeling a bit better. Recently, though, it's all gone downhill again. For a bit more than a week now, the pain's been as bad as ever, the fatigue's back as is the joint pain, the difficulty sleeping and the other little symptoms as well. My blood tests, which were before looking loads better - my CRP score, indicating inflammation, was right down - have gone back in the direction they were heading before and I've been put back on the antibiotics I was on in hospital.
So exams aren't going well. Two hours of sitting in exam conditions commonly ends in excruciating pain, and sure, I've missed quite a lot, so I'm not going to do too well (and if my parents start at me again about tutoring, I will scream). I'm still happy with myself for managing what I've managed thus far - two maths exams and an English exam - and I think that I deserve to be happy with that. I don't have another exam now until Wednesday, which is a drama exam, and I'm worried about that - but the thing is, while I should be studying right now, I'm feeling pretty sick. I'm feeling creatively blocked - even writing this has been challenging - and tired and a little bit like curling up and going to sleep. I know it's not an excuse, but it's difficult to keep functioning as normal when I'm just wishing for this all to be over.
I'm tired and I'm miserable and I just want to eat something, and I don't think that's unreasonable.
Thursday, 30 August 2012
Monday, 27 August 2012
Judy - Exams & thinking about food
Judy
A quick post to let you know that it's only 10 days (yes, that's right) 10 days until Sara can eat again. This must have been the longest 8 weeks I've ever had to live through!
But we're in the planning stages now and thinking about Sara's first few meals. Of course you can't just jump in and stuff yourself, you have to gradually reintroduce food and you have to stay away from certain foods. So as bland as it might sound Sara will be having pumpkin and sweet potato soup with white bread for dinner on September 6th! She is only allowed one meal for the first 3 days and has to stay away from dairy and vegetables, but at least she can join the family table for dinner and at least she'll experience a flavour other than fake banana!
September 6th is also the day that Sara finishes her exams. Sara is not really the type of student to be unprepared for exams, but she has really had no choice this time round. She's missed a lot of school, what with hospital stays, medical appointments and generally not feeling well. I'm really hoping she pulls through but feeling stressed doesn't really help your gut and that probably explains why these last few days she's been feeling terrible.
I'm feeling terribly excited for September 6th! Just hoping that Sara will get through the next 10 days and never have to go through anything like this again.
A quick post to let you know that it's only 10 days (yes, that's right) 10 days until Sara can eat again. This must have been the longest 8 weeks I've ever had to live through!
But we're in the planning stages now and thinking about Sara's first few meals. Of course you can't just jump in and stuff yourself, you have to gradually reintroduce food and you have to stay away from certain foods. So as bland as it might sound Sara will be having pumpkin and sweet potato soup with white bread for dinner on September 6th! She is only allowed one meal for the first 3 days and has to stay away from dairy and vegetables, but at least she can join the family table for dinner and at least she'll experience a flavour other than fake banana!
September 6th is also the day that Sara finishes her exams. Sara is not really the type of student to be unprepared for exams, but she has really had no choice this time round. She's missed a lot of school, what with hospital stays, medical appointments and generally not feeling well. I'm really hoping she pulls through but feeling stressed doesn't really help your gut and that probably explains why these last few days she's been feeling terrible.
I'm feeling terribly excited for September 6th! Just hoping that Sara will get through the next 10 days and never have to go through anything like this again.
Saturday, 18 August 2012
Judy - Results (but why is she no better)
I've left it a while since I last posted, because to be honest I didn't know how to feel about the MRI and blood test results we received last Thursday. Of course I'm delighted that the inflammation in Sara's body seems to have reduced (down from 22 to 4.8) in less than 10 days. It's also great news that there is no obstruction or blockage in her bowel.
But why is it that she's not feeling any better?
Sara could not have been a better patient. She never argues or contradicts the doctors. She tells the truth about how she's feeling and heck she's not eaten for over 5 weeks, you couldn't ask for more. But I understand her frustration because when we see the doctors and she tells them that she is still in pain frequently and nauseous often, they pat her on the shoulder and say "but your blood results tell us another story. Your scan is almost normal apart from some minor inflammation". It's frustrating for me so I can only imagine how condescending it sounds to her.
So here's where I'm at with it all. I'm feeling very optimistic that the medication and "not eating" regime is helping to control the Crohns Disease. I'm hoping it won't be long before the outside of her body catches up and starts feeling better too.
I'm trying to keep things more normal. Well as normal as I can when I have a child governed by a osmolite shake she has to have 5 times a day. Yesterday we had a day in the city shopping. At least we were out and about! I bought a new dress, Ms 13 bought some horrible cardigan in Supre, but poor Sara only ended up buying a present for a friend.
We'll try something new next weekend, your suggestions are all welcome. Remember, they can't involve eating or anything that's too exhausting!
But why is it that she's not feeling any better?
Sara could not have been a better patient. She never argues or contradicts the doctors. She tells the truth about how she's feeling and heck she's not eaten for over 5 weeks, you couldn't ask for more. But I understand her frustration because when we see the doctors and she tells them that she is still in pain frequently and nauseous often, they pat her on the shoulder and say "but your blood results tell us another story. Your scan is almost normal apart from some minor inflammation". It's frustrating for me so I can only imagine how condescending it sounds to her.
So here's where I'm at with it all. I'm feeling very optimistic that the medication and "not eating" regime is helping to control the Crohns Disease. I'm hoping it won't be long before the outside of her body catches up and starts feeling better too.
I'm trying to keep things more normal. Well as normal as I can when I have a child governed by a osmolite shake she has to have 5 times a day. Yesterday we had a day in the city shopping. At least we were out and about! I bought a new dress, Ms 13 bought some horrible cardigan in Supre, but poor Sara only ended up buying a present for a friend.
We'll try something new next weekend, your suggestions are all welcome. Remember, they can't involve eating or anything that's too exhausting!
Sara - venting
I suppose the main reason that I haven't written in a while (and why this is going to be a short post) is because I've been feeling quite conflicted.
I've got all these people coming from different directions, telling me that everything looks good. That I should be happy, that I should be feeling better; if my insides are looking better, logic dictates that I am feeling better and everything should be better. It all follows through. The MRI looks better, which means everything must be better.
Problem is, I'm not feeling all that much better, contrary to what the inside situation might suggest. Actually, I'm not feeling better at all. Sometimes, I'll wake up in the morning and I'll actually be feeling okay, and I suppose that's happening a little more infrequently, at best...but eventually, the pain rears its head or the nausea kicks up or the headaches strike. More often than not, I'm exhausted
And it's not going away. It's just not. As optimistic as I try to be, it's hard to keep a smile on my face when I'm sick of feeling sick and I've had it with being frustrated.
Sometimes it feels like doctors will ask me how I'm feeling, but not listen. The other day, at the doctors, the first person who assessed me gave scores out of ten in various areas, like general well-being or life disruption, tens and sevens and fives, and then my main doctor - after seeing my scans - looked through it and said "Make that a 5, that a 2, that, that a .5, that a 0."
It's hard not to feel that I'm being looked at from the inside out and being told how I'm feeling, instead of being asked.
It's not great, but it's been worse.
So I suppose we just keep going.
I've got all these people coming from different directions, telling me that everything looks good. That I should be happy, that I should be feeling better; if my insides are looking better, logic dictates that I am feeling better and everything should be better. It all follows through. The MRI looks better, which means everything must be better.
Problem is, I'm not feeling all that much better, contrary to what the inside situation might suggest. Actually, I'm not feeling better at all. Sometimes, I'll wake up in the morning and I'll actually be feeling okay, and I suppose that's happening a little more infrequently, at best...but eventually, the pain rears its head or the nausea kicks up or the headaches strike. More often than not, I'm exhausted
And it's not going away. It's just not. As optimistic as I try to be, it's hard to keep a smile on my face when I'm sick of feeling sick and I've had it with being frustrated.
Sometimes it feels like doctors will ask me how I'm feeling, but not listen. The other day, at the doctors, the first person who assessed me gave scores out of ten in various areas, like general well-being or life disruption, tens and sevens and fives, and then my main doctor - after seeing my scans - looked through it and said "Make that a 5, that a 2, that, that a .5, that a 0."
It's hard not to feel that I'm being looked at from the inside out and being told how I'm feeling, instead of being asked.
It's not great, but it's been worse.
So I suppose we just keep going.
Thursday, 9 August 2012
Sara - Home at last
Angst warning
Last time I was discharged from a hospital, it was under terrible circumstances. It was in the middle of the night, after I'd been transferred to a transit ward (with only three male patients to keep me company), accompanied by a hastily scribbled script and a promise of discharge papers in the mail. Dressed in my pyjamas and holding a cryptic crosswords book, suddenly I was out with my family in the cold, listening to arguments about "what was best" for me and "we did the right thing"s. And they did. I'm not a passive person but when it comes to medical authority, I listen, and I do what I'm told, and we didn't do that the first time I was in hospital (and so my mother doesn't freak out, I do believe we did the right thing - Mum, no need to stress). It was a weird experience and yes, it left me feeling quite raw and emotional. It's strange to quickly go from being in the constant care of a team of professionals and to have direct access to painkillers and doctors and aid that - try as they might - my family cannot replicate at home.
I'm an over-emotional person at the best of times...and that was not the best of times.
This time around, it was better.
Not just because the hospital was, overall, much better, but because I knew when I was leaving. Instead of being yanked out a night early, I actually stayed in longer than was originally planned. They told me I could leave after my MRI on Wednesday but when I returned from the scan in a wheelchair, retching into a plastic bag and doubled over with stomach pain, it was agreed that another night would probably be advisable. I got spoken to by a clinical psychologist, I saw members of the pain team, the gastro team, my dietician, my nurse for the day and of course the wonderful head nurse of the IBD clinic who holds everything together. I was given scripts, a med chart, blood test forms and some semblance of a plan to continue on after leaving hospital. I had my bags packed and, most importantly, I had time to mentally ready myself for the environment transition.
Once I got back, I didn't have to flip straight into normal life. I went to my grandparents' house and curled up on the couch, watching bad television (apparently "My Daughter is a Teenage Nudist" is a TV show), reading bad magazines and drinking my bad bad bad meal replacement drink. I took a long, hot shower and washed my hair and made the most of finally being able to freely move my arm (now cannula-less). I don't have to go to school tomorrow and can instead ease into action, have some quiet time, recharge.
It's not all good news, though.
I know what the doctors tell me is true, and I'm not one to question medical authority (as I've established), but I feel like we're running on the spot. We're charging into pain medications and anti-nausea ones (including one that's used on Chemotherapy patients) and every kind of drug imaginable and I'm continuing without food for another eight weeks but...for what? Four weeks already and I've noticed no improvement - having just been in hospital, I'd say I'm worse. It's hard to keep motivated to do something that is so difficult when it doesn't seem to be having any benefits. And this is not because it's the non-medication route - if I'd been on a certain pill for four months and it was making no difference, I'd be equally concerned.
All the while, I have doctors telling me that there was a marked improvement on my last CT scan and I just feel as though these insane levels of pain and nausea and discomfort are being rendered invalid by doctors. My inflammation allegedly looked better as of early July, but I feel worse now than I did in early July. Not only that, but the markers in my blood have consistently become higher, so I can't be making it all up; something is not right in my body and I don't feel like we're not doing enough to combat it and I cannot accurately express quite how frustrating that is.
Almost as frustrating is the constant cry of bystanders that they know someone who has Crohn's or IBD and look what cured them! People don't seem to understand that you're never cured of Crohn's, you just go into remission; nor do they understand that while the power of positive thinking or a gluten free diet might have reduced their pain, it doesn't work for everyone, and even when it works, it's usually just masking symptoms instead of treating them.
Sometimes I forget about the pain and things look alright in the world; I can focus on the good things in my life, like the holiday I'm going on come December and the fact that I'm nearly finished school and that I have loving and supportive family and friends.
Sometimes, when the pain is the worst and the fatigue has worn me through and some kind of dark shadow settles across everything I come into contact with, I forget about the good and it terrifies me.
I'm quite all-over-the-place tonight. I suppose it's exhaustion and emotional upheaval and differing circumstances more than anything, but it doesn't feel like that. It just feels like it's getting quite hard to carry all this weight on my shoulders, especially when I'm told that I shouldn't be feeling this way and that there are so many people in the world who have it so much worse than me. I just want to be the selfish one for the moment, as terrible as that sounds, where I can worry about myself and feel justified in my pain and in my sometime misery.
I'm trying not to let my illness become me but when there's so much else encompassed into it, all these weird feelings and so much constant struggle, it's hard.
Last time I was discharged from a hospital, it was under terrible circumstances. It was in the middle of the night, after I'd been transferred to a transit ward (with only three male patients to keep me company), accompanied by a hastily scribbled script and a promise of discharge papers in the mail. Dressed in my pyjamas and holding a cryptic crosswords book, suddenly I was out with my family in the cold, listening to arguments about "what was best" for me and "we did the right thing"s. And they did. I'm not a passive person but when it comes to medical authority, I listen, and I do what I'm told, and we didn't do that the first time I was in hospital (and so my mother doesn't freak out, I do believe we did the right thing - Mum, no need to stress). It was a weird experience and yes, it left me feeling quite raw and emotional. It's strange to quickly go from being in the constant care of a team of professionals and to have direct access to painkillers and doctors and aid that - try as they might - my family cannot replicate at home.
I'm an over-emotional person at the best of times...and that was not the best of times.
This time around, it was better.
Not just because the hospital was, overall, much better, but because I knew when I was leaving. Instead of being yanked out a night early, I actually stayed in longer than was originally planned. They told me I could leave after my MRI on Wednesday but when I returned from the scan in a wheelchair, retching into a plastic bag and doubled over with stomach pain, it was agreed that another night would probably be advisable. I got spoken to by a clinical psychologist, I saw members of the pain team, the gastro team, my dietician, my nurse for the day and of course the wonderful head nurse of the IBD clinic who holds everything together. I was given scripts, a med chart, blood test forms and some semblance of a plan to continue on after leaving hospital. I had my bags packed and, most importantly, I had time to mentally ready myself for the environment transition.
Once I got back, I didn't have to flip straight into normal life. I went to my grandparents' house and curled up on the couch, watching bad television (apparently "My Daughter is a Teenage Nudist" is a TV show), reading bad magazines and drinking my bad bad bad meal replacement drink. I took a long, hot shower and washed my hair and made the most of finally being able to freely move my arm (now cannula-less). I don't have to go to school tomorrow and can instead ease into action, have some quiet time, recharge.
It's not all good news, though.
I know what the doctors tell me is true, and I'm not one to question medical authority (as I've established), but I feel like we're running on the spot. We're charging into pain medications and anti-nausea ones (including one that's used on Chemotherapy patients) and every kind of drug imaginable and I'm continuing without food for another eight weeks but...for what? Four weeks already and I've noticed no improvement - having just been in hospital, I'd say I'm worse. It's hard to keep motivated to do something that is so difficult when it doesn't seem to be having any benefits. And this is not because it's the non-medication route - if I'd been on a certain pill for four months and it was making no difference, I'd be equally concerned.
All the while, I have doctors telling me that there was a marked improvement on my last CT scan and I just feel as though these insane levels of pain and nausea and discomfort are being rendered invalid by doctors. My inflammation allegedly looked better as of early July, but I feel worse now than I did in early July. Not only that, but the markers in my blood have consistently become higher, so I can't be making it all up; something is not right in my body and I don't feel like we're not doing enough to combat it and I cannot accurately express quite how frustrating that is.
Almost as frustrating is the constant cry of bystanders that they know someone who has Crohn's or IBD and look what cured them! People don't seem to understand that you're never cured of Crohn's, you just go into remission; nor do they understand that while the power of positive thinking or a gluten free diet might have reduced their pain, it doesn't work for everyone, and even when it works, it's usually just masking symptoms instead of treating them.
Sometimes I forget about the pain and things look alright in the world; I can focus on the good things in my life, like the holiday I'm going on come December and the fact that I'm nearly finished school and that I have loving and supportive family and friends.
Sometimes, when the pain is the worst and the fatigue has worn me through and some kind of dark shadow settles across everything I come into contact with, I forget about the good and it terrifies me.
I'm quite all-over-the-place tonight. I suppose it's exhaustion and emotional upheaval and differing circumstances more than anything, but it doesn't feel like that. It just feels like it's getting quite hard to carry all this weight on my shoulders, especially when I'm told that I shouldn't be feeling this way and that there are so many people in the world who have it so much worse than me. I just want to be the selfish one for the moment, as terrible as that sounds, where I can worry about myself and feel justified in my pain and in my sometime misery.
I'm trying not to let my illness become me but when there's so much else encompassed into it, all these weird feelings and so much constant struggle, it's hard.
Wednesday, 8 August 2012
Judy - Hospital
Sara has been in hospital a week and while she's definitely much better, I don't really think we've achieved much in terms of managing her illness. She's on a whole cocktail of medications to mask her symptoms. Stuff to curb the nausea, strong pain killers, but nothing really to address the increasing inflammation in her body. My biggest fear is that we take her, (well a zonked out version of her) home, continue with this "not eating" regime and end up back in hospital in 2 -3 weeks time.
I don't need the results of the MRI to know that her condition has worsened and I don't need anyone else to tell me that studies have shown that not eating for 8 weeks really helps. Words are all very well, but you try not feeding your child for weeks without getting distressed.
The other thing I've been told this week, is that Sara is feeding off my stress. I freely admit to feeling stressed and out of control, but I wouldn't be feeling this way, if I wasn't already in a distressing situation. And on top of that I have a job to maintain, a family to run, meals to prepare. My daughter is in hospital. Of course I'm bloody stressed!
So we'll go home today and try to keep going as best we can. The plan is to be back here next Tuesday for the results of the MRI scan. And beyond that I have no idea what the future holds, but I'm pretty sure my stress levels will be rising.
Saturday, 4 August 2012
Sara - Hospital again
Camp started out okay. Breaks were plentiful and I avoided mealtime like the plague, but otherwise, uneventful and fine. Tuesday, the pain started. Bad pain, pre-hospital pain. I panicked, but I felt like I had something to prove, so I stayed on and kept my calm. Wednesday held a few surprises, and eventually it was decided that mum would pick me up the next day and take me to the hospital, on advice from the nurse at the IBD clinic I attend.
So, after a (naturally preachy but otherwise fun) few days at camp, I was picked up and driven to the hospital. At first, I didn't feel too bad, but about halfway to the hospital pain reared its head and by the time we made it to the ER, it was out of control. Later, in an observation bed, I was seized by nausea, and spent several hours dry-retching. Not a pretty mental picture, sorry to say, and not a particularly pleasant feeling. After being seen by the same Gastro registrar from last Wednesday at the clinic, along with several nurses and other doctors, it was agreed that I'd be admitted, with an MRE (from what I understand, it's mostly the same as an MRI) being a necessity.
The MRE is scheduled for tomorrow and I've spent the last few days lying in a bed in the "Adolescent" ward (the definition of adolescence is a bit twisted - my room mate is six years old). This hospital is nicer than the last one. My room mate is here with lung problems (poor thing is stuck sharing a room and bathroom with an IBD patient). The nurses are lovely and the area is nice and I'm comfortable, I suppose.
Today has been my best day yet - last night was the first time I felt able to do anything without needing to throw up or having to double over in pain. This morning they took out my drip and switched my intravenous meds to oral ones, and I've managed to keep down one of my meal replacement drinks - which is quite an achievement, all things considered. I was even allowed out for an hour, so we drove down to the beach and sat on the grass for a while. It ended quite abruptly with a serious bout of pain that sent me back to my room, but it was still nice to get out for a while.
I'm feeling weird.
My cocktail of medications are messing with my head and I'm still completely unstable. I'm better than I was, I suppose, but I still get the feeling that I'm going to be discharged as early as Tuesday (let's face it, with the MRE tomorrow, there's no way I'll be discharged in the afternoon in a place as disorganised as this), which worries me a bit because aside from the new medications, I'm not sure I'm any better. My blood results are worse than ever and the inflammation scores have gone up dramatically considering my last blood test was only ten days before this one, and I'm still often in pain. I'm worried about going home and continuing on with this no-food regime, and feeling the same, albeit a little bit masked by medication. It's a scary thought. Exciting, I suppose, in a way, but still very scary.
Luckily, I have my laptop and my father has been kind enough to give me internet. I have movies and games and magazines and sometimes I just sleep but right now I'm not sure I can do that - the room mate has about six visitors right now. I'm just killing time, and I'm hoping the MRE comes back tomorrow and tells us something we don't already know, and that a path through this is decided upon.
So fingers crossed.
So, after a (naturally preachy but otherwise fun) few days at camp, I was picked up and driven to the hospital. At first, I didn't feel too bad, but about halfway to the hospital pain reared its head and by the time we made it to the ER, it was out of control. Later, in an observation bed, I was seized by nausea, and spent several hours dry-retching. Not a pretty mental picture, sorry to say, and not a particularly pleasant feeling. After being seen by the same Gastro registrar from last Wednesday at the clinic, along with several nurses and other doctors, it was agreed that I'd be admitted, with an MRE (from what I understand, it's mostly the same as an MRI) being a necessity.
The MRE is scheduled for tomorrow and I've spent the last few days lying in a bed in the "Adolescent" ward (the definition of adolescence is a bit twisted - my room mate is six years old). This hospital is nicer than the last one. My room mate is here with lung problems (poor thing is stuck sharing a room and bathroom with an IBD patient). The nurses are lovely and the area is nice and I'm comfortable, I suppose.
Today has been my best day yet - last night was the first time I felt able to do anything without needing to throw up or having to double over in pain. This morning they took out my drip and switched my intravenous meds to oral ones, and I've managed to keep down one of my meal replacement drinks - which is quite an achievement, all things considered. I was even allowed out for an hour, so we drove down to the beach and sat on the grass for a while. It ended quite abruptly with a serious bout of pain that sent me back to my room, but it was still nice to get out for a while.
I'm feeling weird.
My cocktail of medications are messing with my head and I'm still completely unstable. I'm better than I was, I suppose, but I still get the feeling that I'm going to be discharged as early as Tuesday (let's face it, with the MRE tomorrow, there's no way I'll be discharged in the afternoon in a place as disorganised as this), which worries me a bit because aside from the new medications, I'm not sure I'm any better. My blood results are worse than ever and the inflammation scores have gone up dramatically considering my last blood test was only ten days before this one, and I'm still often in pain. I'm worried about going home and continuing on with this no-food regime, and feeling the same, albeit a little bit masked by medication. It's a scary thought. Exciting, I suppose, in a way, but still very scary.
Luckily, I have my laptop and my father has been kind enough to give me internet. I have movies and games and magazines and sometimes I just sleep but right now I'm not sure I can do that - the room mate has about six visitors right now. I'm just killing time, and I'm hoping the MRE comes back tomorrow and tells us something we don't already know, and that a path through this is decided upon.
So fingers crossed.
Subscribe to:
Posts (Atom)