Today is one of those bad days.
The days when the tears roll unchecked.
When everything decides that it wants to overwhelm me.
When pain and fear take over my rational.
I know these days will come
And I know these days will pass.
But that dosnt make them any easier to bear.
I saw my surgeon in London yesterday.
He basically said we are at the end of what we can do.
At this point the most he can do is to keep me as comfortable as possible until other options open up.
He did run a contrast ct just to make sure nothing sinister is going on.
I saw my GP today.
I knew it was a bad idea.
For as long as I can remember, I have had a fear of talking to doctors and them not believing me.
I know its stupid.
Even when I had my transplant, my biggest fear was one of the doctors turning around and saying why did you get that, you dont need it.
I know its irrational.
I also know why its there.
I do place a lot of it on a certain doctor who I saw as I child and teen.
Today, I had an appointment with that doctor again.
She was the only one with appointments and I was desperate.
I needed pain meds.
I shouldnt have bothered.
She gave me some excuses about not being able to give me many meds due to my liver.
I left with meds that are less effective than the ones the hospital gave me.
I went to see her because the ones I got off the hospital were not strong enough.
My new nebs I needed her to prescribe she couldnt do either.
Conversation soon shifted to my mum, who went with me.
How she was doing and how her latest blood results looked (all normal btw)
She wrote mum a new script and then we left.
Not bad I guess seeing two people in one appointment.
I have slept all day.
Plagued by dreams.
I hate dreams, they make no sense and leave you trapped.
My dreams always seem to follow the same theme.
Being chased or trapped.
Always different, totally different, but same theme.
I think perhaps this is why I avoid sleep when I can.
why I am still awake in the early hours.
Why I find myself feeling exhausted, yet doing everything I can to avoid shutting my eyes.
My tube keep blocking and I find myself often hungry for air.
Its scary, one of the most scary feelings in the world.
It always flashes me back to hospital.
Lying in bed, taking so much effort to force each breathe into my lungs.
I eventually passed out in hospital and awoke a few days later in ICU.
I hate not being able to breathe.
This is a bit of an outpouring.
When things get to much to keep in.
Tomorrow will be a brighter day.
But the biggest challenge is always getting through this day in one piece.
Today is hard.
But it is nearly over.
Showing posts with label GP. Show all posts
Showing posts with label GP. Show all posts
Thursday, August 02, 2012
Wednesday, February 23, 2011
Escape
I have had a wonderful, exhausting, fun few days.
I took my youngest niece and nephew to London for a couple of days.
And even met my new man (he just dosnt know it yet) on the subway. From the side he looked like the Vampire Eric from true blood *swoons*
It was fun and very exhausting. Though, we could have spent much much longer there. I love spending time with the kids, especially when I get to play the adult, dealing with bed times, bath times and food. I like the way things are at the moment, I am at the age now, where I can kinda whisk in and play the cool Auntie role that I have always wanted. They listen to me and do as they are told, so I dont have to do any of the horrible shout at them bits, just the fun stuff.
Its great in a way, as I have said before, the kids know that I am sick all the time and the youngest, Bethany, wont remember a time when I wasnt sick. But if anything should happen to me, I dont want them to think of me as sick, I want their memories to be of fun times and lots of love. I think I have achieved that.
Though, it is kind of bitter sweet. By building nice memories with them, I am in fact getting closer to them and should anything happen, it will be more upsetting. Bethany confessed to me the other day, that there is one song that reminds her of me and every time she hears it she cries. Apparently she listened to it lots when I spent last Christmas in hospital.
This makes me sad, but the lyrics do fit. Especially the bit about hearing your voice. We do have a very close relationship and she is the one I would miss the most, that kind of unconditional love and having her come to me for advice and such.
In other news, I got in trouble for canceling my doctors appointment last week (oops) They apprently rang ours to get in touch and spoke to my mum. My Tacrolimus levels where messed up and through the roof (Hence why I was feeling so rough) and I had grown an infection in my sputum off my chest again and so needed antibiotics.
So I started the anti biotics as soon as I got home on Monday, but I had a follow up appointment today. She told me to stop the antioboitcs and gave me a new set, as my chest had then gone on to grow a second further infection that needed different anti biotics, fun fun fun. One of them was Staphylococcus aureus, again and I forget what she said the second one was, I think it was Haemophilus influenzae. But at this rate, I am going to end up getting medication resistant to the staph. Thats at least 8 times in less than a year and I am doing everything I can to keep my chest clear.
So more antibiotics, this time with the ones that mess horribly with my stomach, oh joy of joys. And more bloods at the end of next week to check kidneys and medication levels. My doctors just love me, can you tell hehe.
Oh and where I have the sore nose off my humdiferie, is also the same infection as on my chest, so I need to stop using my humdifier until everything has cleared up. Oh well. sleep time now.
I took my youngest niece and nephew to London for a couple of days.
And even met my new man (he just dosnt know it yet) on the subway. From the side he looked like the Vampire Eric from true blood *swoons*
Oh and that is my hat, but my niece stole it!
We had bubble milk and Banana soup. The soup was ok, but the bubble bits are semolina ick.
It was fun and very exhausting. Though, we could have spent much much longer there. I love spending time with the kids, especially when I get to play the adult, dealing with bed times, bath times and food. I like the way things are at the moment, I am at the age now, where I can kinda whisk in and play the cool Auntie role that I have always wanted. They listen to me and do as they are told, so I dont have to do any of the horrible shout at them bits, just the fun stuff.
Its great in a way, as I have said before, the kids know that I am sick all the time and the youngest, Bethany, wont remember a time when I wasnt sick. But if anything should happen to me, I dont want them to think of me as sick, I want their memories to be of fun times and lots of love. I think I have achieved that.
Though, it is kind of bitter sweet. By building nice memories with them, I am in fact getting closer to them and should anything happen, it will be more upsetting. Bethany confessed to me the other day, that there is one song that reminds her of me and every time she hears it she cries. Apparently she listened to it lots when I spent last Christmas in hospital.
This makes me sad, but the lyrics do fit. Especially the bit about hearing your voice. We do have a very close relationship and she is the one I would miss the most, that kind of unconditional love and having her come to me for advice and such.
In other news, I got in trouble for canceling my doctors appointment last week (oops) They apprently rang ours to get in touch and spoke to my mum. My Tacrolimus levels where messed up and through the roof (Hence why I was feeling so rough) and I had grown an infection in my sputum off my chest again and so needed antibiotics.
So I started the anti biotics as soon as I got home on Monday, but I had a follow up appointment today. She told me to stop the antioboitcs and gave me a new set, as my chest had then gone on to grow a second further infection that needed different anti biotics, fun fun fun. One of them was Staphylococcus aureus, again and I forget what she said the second one was, I think it was Haemophilus influenzae. But at this rate, I am going to end up getting medication resistant to the staph. Thats at least 8 times in less than a year and I am doing everything I can to keep my chest clear.
So more antibiotics, this time with the ones that mess horribly with my stomach, oh joy of joys. And more bloods at the end of next week to check kidneys and medication levels. My doctors just love me, can you tell hehe.
Oh and where I have the sore nose off my humdiferie, is also the same infection as on my chest, so I need to stop using my humdifier until everything has cleared up. Oh well. sleep time now.
Tuesday, February 15, 2011
Being alone can be good + my new machine
Sometimes, its good to be single on Valentines. I was never one to really make a fuss of it, I mean, why celebrate your love to someone just because everyone else decides to that day. And the tacky bears and over priced roses just dont do it for me. But, when you go to bed looking like this.
Then, you can be glad there isnt someone cute lying next to you. Yup, thats my tubing for my humidifier, which is still causing me great problems in the nose department, despite, thick layers of vaseline (Thanks for the tips) So anyway, heres the introduction to my machine. You have just seen the nose piece ,and this is the actual machine.
The clear tub, is what I fill with sterile water every night. It holds about 600mls, and depending on what flow it is set at, that will last between 4 and 8 hours. Each morning, when you shut the machine down, it goes through a dryer sequence taking all the moisture out of the tubing and killing any bugs with heat. I then have to clean out the tub with running water to make sure that is clean. And thats it, till I fill it up in the night. Though, once a week, I stick the tub in the dishwasher to give it a good clean, along with my nebbi pots. And then the whole system tub and tubes I have to change monthly.
When i turn it on, I have this little screen:
And from there, it tells me what it is doing, eg heating up of cleaning. I can also select the flow rate, depending if on how I am feeling. If I need a lot of moisture, the flow rate goes up high to about 50 L/m, but if I am not to bad, I can take it right down to 10 L/m.
So far it is working well, Instead of struggling to cough dry hard ick up, I have lots of lose stuff that moves easier. The nsoe thing is the only problem :/ But I may get some cotton out and have a go at adapting it.
As for how I am feeling? urgh still crap. Mum came home from work today and actully said, you like crap, like death warmed up. I then proceeded to sleep for 3 hours curled up in a corner, sleeping right through the phone ringing 3 times. I didnt sleep well last night as woke up in agony with my head, at least 3 times. So I was made to see a doctor today.
They have given me new migraine and headaches tablets and are running a load of bloods, cultures and x rays, to be on the safe side. Fun. Its jsut mega mega annoying, as I want to take my niece and nephew away this week, but I have to consider, is it a good idea to be any distance from home, with 2 kids if I am feeling this rough and sleeping so much. argh so annoying.
OH oh oh.
If anyone in the UK is reading, who has an interest in the progression of Transplant, I really would recommend the program I watched earlier, it was Horizon: How to mend a broken heart. It had a lot of info in it, in regards to things like heart pumps, like Andreas blog that I linked to a few weeks ago. But, what was more exciting (well for me) was the whole stem cell research thing. The whole tracheal transplant thing is only availble due to being able to rebuild parts of the trachea using a persons own stem cells. This program had a section on about that, where they are working on coating a heart structure in stem cells so it becomes a heart that can be transplanted, with no need for anti rejection meds. It does amaze me where things are going. In the not to distant future, we may not need deceased donors for transplant, there may not be people dying while waiting, as we can just harvest some of the persons own cells and build them a new organ. Worth a watch anyway.
Here is the Iplayer link http://www.bbc.co.uk/i/ysh81/
Then, you can be glad there isnt someone cute lying next to you. Yup, thats my tubing for my humidifier, which is still causing me great problems in the nose department, despite, thick layers of vaseline (Thanks for the tips) So anyway, heres the introduction to my machine. You have just seen the nose piece ,and this is the actual machine.
The clear tub, is what I fill with sterile water every night. It holds about 600mls, and depending on what flow it is set at, that will last between 4 and 8 hours. Each morning, when you shut the machine down, it goes through a dryer sequence taking all the moisture out of the tubing and killing any bugs with heat. I then have to clean out the tub with running water to make sure that is clean. And thats it, till I fill it up in the night. Though, once a week, I stick the tub in the dishwasher to give it a good clean, along with my nebbi pots. And then the whole system tub and tubes I have to change monthly.
When i turn it on, I have this little screen:
And from there, it tells me what it is doing, eg heating up of cleaning. I can also select the flow rate, depending if on how I am feeling. If I need a lot of moisture, the flow rate goes up high to about 50 L/m, but if I am not to bad, I can take it right down to 10 L/m.
So far it is working well, Instead of struggling to cough dry hard ick up, I have lots of lose stuff that moves easier. The nsoe thing is the only problem :/ But I may get some cotton out and have a go at adapting it.
As for how I am feeling? urgh still crap. Mum came home from work today and actully said, you like crap, like death warmed up. I then proceeded to sleep for 3 hours curled up in a corner, sleeping right through the phone ringing 3 times. I didnt sleep well last night as woke up in agony with my head, at least 3 times. So I was made to see a doctor today.
They have given me new migraine and headaches tablets and are running a load of bloods, cultures and x rays, to be on the safe side. Fun. Its jsut mega mega annoying, as I want to take my niece and nephew away this week, but I have to consider, is it a good idea to be any distance from home, with 2 kids if I am feeling this rough and sleeping so much. argh so annoying.
OH oh oh.
If anyone in the UK is reading, who has an interest in the progression of Transplant, I really would recommend the program I watched earlier, it was Horizon: How to mend a broken heart. It had a lot of info in it, in regards to things like heart pumps, like Andreas blog that I linked to a few weeks ago. But, what was more exciting (well for me) was the whole stem cell research thing. The whole tracheal transplant thing is only availble due to being able to rebuild parts of the trachea using a persons own stem cells. This program had a section on about that, where they are working on coating a heart structure in stem cells so it becomes a heart that can be transplanted, with no need for anti rejection meds. It does amaze me where things are going. In the not to distant future, we may not need deceased donors for transplant, there may not be people dying while waiting, as we can just harvest some of the persons own cells and build them a new organ. Worth a watch anyway.
Dr Kevin Fong finds out how close scientists are to being able to mend your heart if it stops working. He meets some of the people who have undergone pioneering heart operations and the scientists who are pushing the limits of cardiac treatment.
We meet a man who has had his heart replaced with an artificial one powered by a mechanical pump he carries around in a rucksack, and witness a scientist bring a dead animal heart back to life on a workbench.
Plus, the work of an American scientist who is using stem cells to turn what she calls a 'ghost heart' - the scaffold of a heart - into a replacement heart for humans.
Here is the Iplayer link http://www.bbc.co.uk/i/ysh81/
Friday, December 24, 2010
update
I appologise for lack of updates, I usually do my blog just before bed, but this week, by the time I have gotten into bed, I have literally collapsed with exhaustion, not that I have gone straight to sleep but blah.
Firstly, and I think most importantly, Andrea got her transplant!!! WOO WOO!! Surgeons said the op went easier than expected, she was taken off the ventilator the same night and sitting up by the next day. She still has a lot of pain and a long way to go, but things are looking oh so good!! This, is the easier bit now, the getting better, the recovering. I think it is much easier to recover, when a positive end is in sight, when you know it will all be worth while. What a christmas gift huh. Still rooting for you Andrea! You can do this!
As for me, life has been hectic or exhausting. I keep telling my mum, that every time that I go out and I have to push myself, my breathing gets a little bit worse and it dosnt re improve, so I try to avoid going out as much as possible to sustain my throat over the holidays. Everyday she comes home and says, why are you not ready, we need to go out. Gah go out yourself!!
Had a doctors appointment today. Due to the amount of antibiotics I have had over the last 10 months in addition to my meds which are harsh on the stomach, I am having a lot of stomach issues. As I cant get rid off the cause by stopping any of the meds, I am now starting on yet another new med, oh the joy. (Icky bit coming up so you might want to skip the rest of this paragraph) The doc also thinks I need to be running extra nebs as my cough is annoying and yet again coughing up hard chunks (lovely) Apparently, this is from my lower airways and all due to me not being able to get enough air out of my lungs in a cough, so it just kinda sits there and dries (hence why I often get a pain in my lungs) especially when I am asleep as my body gets lazy and dosnt breathe as hard, until I am able to get it out ick. Due to it sitting on my chest, I need to doubly keep an eye on my temp and seek treatment, should I get any rise.
Oh, in other news, I decided that I was changing my hair colour for christmas. I wanted to go turquoise and purple. I but the bleach stripping stuff on that I normally use. Did my hair go white? yellow? orange? nope!! It is bright neon bubblegum pink, with glowing white roots! I used a new red dye last time I did it (still semi perment) but it must just have way more staying power than previous ones, and a bleach, that I have perviously used to take black dyed hair to white, would not take all the red out. Looks like I will have to go back to red for Christmas, though mum keeps trying o talk me into going a natural colour (nah)
Tomorrow, I am sitting in the hospital for 3 hours with my niece (makes a change from me) She has broken her wrist (again!) so she has to go for some special bone scan with contrast dye. Joy of joys. I also have mums stocking to finish another sock monkey and a ton of wrapping! I just wrapped most of mums stuff and it took me nearly 2 hours gah!
oh wel, hopefully the stress will be over in a couple of days and I can chill out a bit more hehe.
I shall leave you with a picture of our tree.
And my grumpy Hermy, who was sitting on the fireplace getting a warm off the fire. Dont think he likes having his picture taken.
Firstly, and I think most importantly, Andrea got her transplant!!! WOO WOO!! Surgeons said the op went easier than expected, she was taken off the ventilator the same night and sitting up by the next day. She still has a lot of pain and a long way to go, but things are looking oh so good!! This, is the easier bit now, the getting better, the recovering. I think it is much easier to recover, when a positive end is in sight, when you know it will all be worth while. What a christmas gift huh. Still rooting for you Andrea! You can do this!
As for me, life has been hectic or exhausting. I keep telling my mum, that every time that I go out and I have to push myself, my breathing gets a little bit worse and it dosnt re improve, so I try to avoid going out as much as possible to sustain my throat over the holidays. Everyday she comes home and says, why are you not ready, we need to go out. Gah go out yourself!!
Had a doctors appointment today. Due to the amount of antibiotics I have had over the last 10 months in addition to my meds which are harsh on the stomach, I am having a lot of stomach issues. As I cant get rid off the cause by stopping any of the meds, I am now starting on yet another new med, oh the joy. (Icky bit coming up so you might want to skip the rest of this paragraph) The doc also thinks I need to be running extra nebs as my cough is annoying and yet again coughing up hard chunks (lovely) Apparently, this is from my lower airways and all due to me not being able to get enough air out of my lungs in a cough, so it just kinda sits there and dries (hence why I often get a pain in my lungs) especially when I am asleep as my body gets lazy and dosnt breathe as hard, until I am able to get it out ick. Due to it sitting on my chest, I need to doubly keep an eye on my temp and seek treatment, should I get any rise.
Oh, in other news, I decided that I was changing my hair colour for christmas. I wanted to go turquoise and purple. I but the bleach stripping stuff on that I normally use. Did my hair go white? yellow? orange? nope!! It is bright neon bubblegum pink, with glowing white roots! I used a new red dye last time I did it (still semi perment) but it must just have way more staying power than previous ones, and a bleach, that I have perviously used to take black dyed hair to white, would not take all the red out. Looks like I will have to go back to red for Christmas, though mum keeps trying o talk me into going a natural colour (nah)
Tomorrow, I am sitting in the hospital for 3 hours with my niece (makes a change from me) She has broken her wrist (again!) so she has to go for some special bone scan with contrast dye. Joy of joys. I also have mums stocking to finish another sock monkey and a ton of wrapping! I just wrapped most of mums stuff and it took me nearly 2 hours gah!
oh wel, hopefully the stress will be over in a couple of days and I can chill out a bit more hehe.
I shall leave you with a picture of our tree.
And my grumpy Hermy, who was sitting on the fireplace getting a warm off the fire. Dont think he likes having his picture taken.
Friday, September 10, 2010
exhaustion
I have just spent the last 5 minutes gazing around my bed looking for my ipod. I had a feeling I was sitting on it, but just thinking about the effort needed to move in order too look was too much. I feel like I have been up for days, up and active. Instead, I have been up for maybe 13 hours of which, I have only moved for about an hour.
Last night, I went to be early, well early for me. In fact, I went even earlier. I found myself lying on my bed in my pjs at 8pm. This is me who goes to bed as the sun comes up. I had a migraine, that came on so suddenly. I had taken painkillers while in the car for my tooth but about 10 minutes after taking them, I started with a splitting headache. Got in about 15 minutes later and I couldnt see a hand in front of my face, couldnt even get the key in the lock, just blinding bright spots. Within minutes came the standard dizziness and nausea and as I had just taken painkillers, I couldnt swap to migraine specific medication. So on went the PJs and I went to bed. I dozed for a short while, but I had emails and things I needed to do online, so once I could see straight, i did a little on the computer, but not much. Then to bed.
Slept for 12 hours straight yet struggled to wake. Lazy day, not done much.
Had a GP appointment, arnt they always fun. My doctor was so pleased to see me without my trach, said it is the best news she has heard all month and was grinning ear to ear. Said she couldnt wait to tell my other doctor. Supposse its nice to know that they care that much. The two doctors have seen me through a lot, from transplant and recovery, numerous infections and emergency appointments often followed by emergency admittence, through my self harm and psych treatments to the more recent stuff. They know I am sensible and that if I request an emergency appointment, that I do genuinely need one. I have a tendency to get sick quick and usually on a friday.
I did mention the tiredness and about wanting to lose weight. I got the answers I predicted I would. Your bound to be tired, you just had major surgery and a lot to adjust to, give it time and get plenty of rest. And comments like, you should be able to lose weight easily now, you have incentive and time and your not permanently focused on your next breath.
This is all true, yet that foreboding feeling that this isnt the end of it all still seems to hang over me. Again, I know this feeling is due to past issues always arising, which they are not going to do this time. But that is fine in theory, dosnt make it any easier to deal with though.
This evening, my hair has been bleached. The red was so faded it looked more orange and icky. I left it one for a long time, yet the remains fo the red were being stubborn and not fading out. Eventually, after having it on for over double the suggested time, I washed off. Its burnt my scalp, which I expected, just means I will be stuck with dandruff for a while, but I can deal with that. Right now, it is white/blonde on the roots and pink on the ends. Looks kinda funky actully. Tomorrow it will go red. YAY cant wait.
And now? now I am going to curl up and sleep a very deep sleep.
I am still amazed at just how much easier going to bed is. Theres no restocking tissues, drinks, saline and nebs before bed. No sterilizing spare tubes and making sure there are enough tubes to last the night. No suction and no filters. Just simply, im going to bed and get in. Its the same going out, no getting my out of the house bag ready or making sure I have enough packs of tissues in stock.
Please dont ever let em need a trach again.
This weekend is going to be a challenge. My sister is moving (I was in hospital last time) and we are going to help. Sure by Sunday I will know what real exhaustion is.
Last night, I went to be early, well early for me. In fact, I went even earlier. I found myself lying on my bed in my pjs at 8pm. This is me who goes to bed as the sun comes up. I had a migraine, that came on so suddenly. I had taken painkillers while in the car for my tooth but about 10 minutes after taking them, I started with a splitting headache. Got in about 15 minutes later and I couldnt see a hand in front of my face, couldnt even get the key in the lock, just blinding bright spots. Within minutes came the standard dizziness and nausea and as I had just taken painkillers, I couldnt swap to migraine specific medication. So on went the PJs and I went to bed. I dozed for a short while, but I had emails and things I needed to do online, so once I could see straight, i did a little on the computer, but not much. Then to bed.
Slept for 12 hours straight yet struggled to wake. Lazy day, not done much.
Had a GP appointment, arnt they always fun. My doctor was so pleased to see me without my trach, said it is the best news she has heard all month and was grinning ear to ear. Said she couldnt wait to tell my other doctor. Supposse its nice to know that they care that much. The two doctors have seen me through a lot, from transplant and recovery, numerous infections and emergency appointments often followed by emergency admittence, through my self harm and psych treatments to the more recent stuff. They know I am sensible and that if I request an emergency appointment, that I do genuinely need one. I have a tendency to get sick quick and usually on a friday.
I did mention the tiredness and about wanting to lose weight. I got the answers I predicted I would. Your bound to be tired, you just had major surgery and a lot to adjust to, give it time and get plenty of rest. And comments like, you should be able to lose weight easily now, you have incentive and time and your not permanently focused on your next breath.
This is all true, yet that foreboding feeling that this isnt the end of it all still seems to hang over me. Again, I know this feeling is due to past issues always arising, which they are not going to do this time. But that is fine in theory, dosnt make it any easier to deal with though.
This evening, my hair has been bleached. The red was so faded it looked more orange and icky. I left it one for a long time, yet the remains fo the red were being stubborn and not fading out. Eventually, after having it on for over double the suggested time, I washed off. Its burnt my scalp, which I expected, just means I will be stuck with dandruff for a while, but I can deal with that. Right now, it is white/blonde on the roots and pink on the ends. Looks kinda funky actully. Tomorrow it will go red. YAY cant wait.
And now? now I am going to curl up and sleep a very deep sleep.
I am still amazed at just how much easier going to bed is. Theres no restocking tissues, drinks, saline and nebs before bed. No sterilizing spare tubes and making sure there are enough tubes to last the night. No suction and no filters. Just simply, im going to bed and get in. Its the same going out, no getting my out of the house bag ready or making sure I have enough packs of tissues in stock.
Please dont ever let em need a trach again.
This weekend is going to be a challenge. My sister is moving (I was in hospital last time) and we are going to help. Sure by Sunday I will know what real exhaustion is.
Friday, July 30, 2010
Missing!! and a new layout.
It has now been a number of hours, probably 72, if I worked it out, so this can now offically be reported as missing.
At approxamitly 20:40 on 27 July 2010, my Itouch, went missing from my home. I am greatly concerned about this matter and I hope that said Itouch will return to me very soon as I am lost without it.
haha.
Nah seriously, my itouch has like vanished off the face of the earth! I had it the other night as I had it on when I went for a shower. I vaguely remember picking it up with my stuff in the bathroom but I dont recall what I did then. I know when I got into bed about 2 hours late, I could not find it on my bed, where it is normally kept. I assumed I had left it in the bathroom but it was too late at night to go hunting in there so I managed without it. I have since searched my room, my laundry bin, my regular bin, my bed, under my bed and all through the bathroom, but there is no sign.
I live with my ipod though =[ I have my film subtitles on it, important addresses, books, games, music. I dont sleep well without it as I use it to block the stupid ringing in my ears out. I use it for medical textbooks and such when I am doing my voluntary work thing. And I use it for sneakily looking up answers to tv quiz programs to make myself look smarter than my dad lol.
No doubt it will turn up some place stupid like the fridge (which I have already checked) but still annoying. I need it!!
And if you have gotten this far, I am pretty sure you will have noticed my new look. (hopefully)
What do you think? It still needs a little tweaking as it takes a while to load, but I think I like, just hope its easy enough to read. I do love Venice. And this photo was taken when I was so so tired, it was worth it, just wish it had taken easier and been sharper. The camera kept trying to tell me I was in the wrong and that it was daylight not 10pm.
I am also having one of those minor frustration things going on in my head right about now too. I had a GP apointment today and I was going to pick up a script. When I got there they told me that the doctor had refused to write my script as i needed bloods doing first. When I explained that it was anti rejection drugs and I cant do without, they offered to write me a couple of days worth until they got blood results. I just dont get why GPs need to check this?! I get bloods done a minimum of every 3 months in a hospital clinic so it is monitored. And if the results came back wrong, the GP would still need to give me the meds but refer me to Liver clinic. So why not just write the script out to begin with? I said all this to the doctor, but she was still, yeah, we are still not writing the script out till we get your results.
So after pushing my luck saying all that to her, I couldnt push much more when it came to the purpose of the appointment. I explained about the whole infection thing and how the anti biotics were not long enough or strong enough to deal with it. It still has staphylococcus in it by the way. She agreed that if it was still heavily infected when I got to London they would just refuse to take me to surgery. That being said, I was hoping for a nice 10 day course of 500 mg tablets to kick this infections butt. Instead, I came out with a whole 7 days of 250 mgs. Which I know is not going to clear it.
She also started debating on what dressings we could change to help it, so I told her my plan to switch to duo derm and metaline that evening for a couple of days to allow the skin to heal. She looked kinda taken aback that I knew what dressings were best and how to take care of it.
Its weird, I feel bad most of the time talking to the doctors as I feel like I am telling them what to do, when they spent years at med school and 'know better' but often, I know what I am talking about, I have more personal experience and I know what works and what dosnt. Of course, I never want to come accross as cocky or a know it all. But this is my health and if I dont get what I need right now, things can get pretty bad pretty quick.
I did mention about a mole that has been painful so I have cream for that and of course, with being high risk for skin cancer (thank you anti rejection meds) I have to go for a check up again next week and possibly a referral if it hasnt settled.
By this point I didnt mention the extreme tirdeness or headaches, I knew she would just say, well just wait till you go to London and see how things are. I do however, have my suspcions that it s caused by to much carbon dioxide. They come on pretty bad when I talk or when I am walking, painkillers hardly touch them and now I have nausea adding to it. But its wrong to self diagnose so Im going to shut up at this point.
9 days till I am in London and I should be able to breathe again! yay!
oh please let me know if there are any issues with this layout? not clear enough, or not displaying and such.
Thankies.
At approxamitly 20:40 on 27 July 2010, my Itouch, went missing from my home. I am greatly concerned about this matter and I hope that said Itouch will return to me very soon as I am lost without it.
haha.
Nah seriously, my itouch has like vanished off the face of the earth! I had it the other night as I had it on when I went for a shower. I vaguely remember picking it up with my stuff in the bathroom but I dont recall what I did then. I know when I got into bed about 2 hours late, I could not find it on my bed, where it is normally kept. I assumed I had left it in the bathroom but it was too late at night to go hunting in there so I managed without it. I have since searched my room, my laundry bin, my regular bin, my bed, under my bed and all through the bathroom, but there is no sign.
I live with my ipod though =[ I have my film subtitles on it, important addresses, books, games, music. I dont sleep well without it as I use it to block the stupid ringing in my ears out. I use it for medical textbooks and such when I am doing my voluntary work thing. And I use it for sneakily looking up answers to tv quiz programs to make myself look smarter than my dad lol.
No doubt it will turn up some place stupid like the fridge (which I have already checked) but still annoying. I need it!!
And if you have gotten this far, I am pretty sure you will have noticed my new look. (hopefully)
What do you think? It still needs a little tweaking as it takes a while to load, but I think I like, just hope its easy enough to read. I do love Venice. And this photo was taken when I was so so tired, it was worth it, just wish it had taken easier and been sharper. The camera kept trying to tell me I was in the wrong and that it was daylight not 10pm.
I am also having one of those minor frustration things going on in my head right about now too. I had a GP apointment today and I was going to pick up a script. When I got there they told me that the doctor had refused to write my script as i needed bloods doing first. When I explained that it was anti rejection drugs and I cant do without, they offered to write me a couple of days worth until they got blood results. I just dont get why GPs need to check this?! I get bloods done a minimum of every 3 months in a hospital clinic so it is monitored. And if the results came back wrong, the GP would still need to give me the meds but refer me to Liver clinic. So why not just write the script out to begin with? I said all this to the doctor, but she was still, yeah, we are still not writing the script out till we get your results.
So after pushing my luck saying all that to her, I couldnt push much more when it came to the purpose of the appointment. I explained about the whole infection thing and how the anti biotics were not long enough or strong enough to deal with it. It still has staphylococcus in it by the way. She agreed that if it was still heavily infected when I got to London they would just refuse to take me to surgery. That being said, I was hoping for a nice 10 day course of 500 mg tablets to kick this infections butt. Instead, I came out with a whole 7 days of 250 mgs. Which I know is not going to clear it.
She also started debating on what dressings we could change to help it, so I told her my plan to switch to duo derm and metaline that evening for a couple of days to allow the skin to heal. She looked kinda taken aback that I knew what dressings were best and how to take care of it.
Its weird, I feel bad most of the time talking to the doctors as I feel like I am telling them what to do, when they spent years at med school and 'know better' but often, I know what I am talking about, I have more personal experience and I know what works and what dosnt. Of course, I never want to come accross as cocky or a know it all. But this is my health and if I dont get what I need right now, things can get pretty bad pretty quick.
I did mention about a mole that has been painful so I have cream for that and of course, with being high risk for skin cancer (thank you anti rejection meds) I have to go for a check up again next week and possibly a referral if it hasnt settled.
By this point I didnt mention the extreme tirdeness or headaches, I knew she would just say, well just wait till you go to London and see how things are. I do however, have my suspcions that it s caused by to much carbon dioxide. They come on pretty bad when I talk or when I am walking, painkillers hardly touch them and now I have nausea adding to it. But its wrong to self diagnose so Im going to shut up at this point.
9 days till I am in London and I should be able to breathe again! yay!
oh please let me know if there are any issues with this layout? not clear enough, or not displaying and such.
Thankies.
Sunday, July 18, 2010
physical update
hmm
I have spent all evening wondering if I should write this and how to attack it if I do write it.
But I began this blog, in hopes that if someone was going through something similar they would know they are not alone. Mainly I wanted to share my experience with all aspects of it, so I am going to detail it.
However, I want to make it clear to myself and everyone, that this, this isnt a rant or a moan or anything like that. Its just how it is right now.
In my usual hospital, I have gained a bit of a reputation. All of the staff there know me and they all know that if I start to get ill, something needs to be done pretty quick. I am known for going down fast.
Every time I have gotten sick, I have gone from well to needing hospital in 2 days if not 2 hours.
This time is different. Yes I have been feeling tired, but nothing that has overly worried me.
Over the last few days, I think I have started getting more breathless.
Its not much, its not something that would be noticed on a day to day basis.
But when I got back from London, 2 weeks ago give or take, I could walk fairly fast up the stairs. Yes I would be panting when I got to the top, but I would be able to carry on with what I was doing or picking up whatever I had gone up for.
Tonight, I have just walked, fairly slowly up the stairs as I was behind mum, but when I got up stairs, I had to stop and sit down for a few minutes till my breathing settled.
I noticed this a few days ago, but I put it down to being a bad day.
I still am hoping it is/was a bad day.
But in my mind, I'm spotting other things.
The problem is, are these new things real? is my breathing getting worse?
Or am I panicking? Is it stress? Is it psychosomatic?
These are answers that I dont know.
Usually, when walking, if I start to feel excessively breathless, it usually means my inner tube as clogged. I am able to take it out and change it and clean the old one. This has pretty much become an automatic movement, kinda like getting a tissue out to blow your nose. Today, a couple of times, I found myself in the midst of changing the tube, however, when looking at the tube I was taking out, it was pretty much clear, not how I would expect it to look if it were clogged.
When I got home, I thought I would pass a suction tube just to make sure there was nothing blocking the end of the tube just incase. If I am honest, I have been avoiding using my suction. I dont like it, but I dont want to get used to having it, I would rather work on strengthening my cough.
The tube passed with only a small amount of resistance, which is odd as there isnt normal any resistance. But it felt kinda different. It felt tighter, more restricted. However, im not guaranteeing this as a symptom as it has been a while since I passed a tube, so it might just be me working myself into a worry.
I'm not overly concerned yet. As I said it could be all kinds of things. My chest could be too dry, it could be the beginning of a chest infection, it could by psychosomatic, it could be that I am over tired, it could be a whole host of things.
The thought is still in the back of my mind though.
Mum said, that while in London, the surgeon said that my lower airway was also narrowing, as in below my trach tube. I didnt know this was possible and I'm still not sure.
I didnt hear him say it, but then that could be a result of crappy hearing and/or post anesthetic brain.
I have not mentioned this to anybody yet. This isnt something I am overly worried about, sure its on my mind, but there is a lot more ahead of it in my mind.
I trust my team and I know that, should it be something like lower arway narrowing, that they will look after me and sort it. In like 9 days time I have an appointment with my surgeon up here where x rays will be run, the week after that I have an ENT appointment with my other surgeon, then I have London. And worst case, it is bad when I get to london, I will be going to theatre that day anyway so they can get a proper look and sort it. In between that, I can (well mum can) phone my ward or the GP will fit me. And of course there is the option regular people have of A&E., though I am told , where possible to avoid A&E. A&E tend to like to want to fiddle and save the day. They like to do procedures in ressus in the name of stabilizing you or assessing you. Heres where memories of being put on CPAP come flooding back so that the doctors can lie me flat enough to attempt for the 12th time to insert an arterial line. Plus A&E, is riddled with infections, which would be bad right now.
So the plan is, to continue to ignore this. I am pretty sure it is going to amount to nothing and I have back up plans. And I am feeling ok in my head space. I can deal with this. This isnt scary, this isnt forever and things ARE going to improve.
I have spent all evening wondering if I should write this and how to attack it if I do write it.
But I began this blog, in hopes that if someone was going through something similar they would know they are not alone. Mainly I wanted to share my experience with all aspects of it, so I am going to detail it.
However, I want to make it clear to myself and everyone, that this, this isnt a rant or a moan or anything like that. Its just how it is right now.
In my usual hospital, I have gained a bit of a reputation. All of the staff there know me and they all know that if I start to get ill, something needs to be done pretty quick. I am known for going down fast.
Every time I have gotten sick, I have gone from well to needing hospital in 2 days if not 2 hours.
This time is different. Yes I have been feeling tired, but nothing that has overly worried me.
Over the last few days, I think I have started getting more breathless.
Its not much, its not something that would be noticed on a day to day basis.
But when I got back from London, 2 weeks ago give or take, I could walk fairly fast up the stairs. Yes I would be panting when I got to the top, but I would be able to carry on with what I was doing or picking up whatever I had gone up for.
Tonight, I have just walked, fairly slowly up the stairs as I was behind mum, but when I got up stairs, I had to stop and sit down for a few minutes till my breathing settled.
I noticed this a few days ago, but I put it down to being a bad day.
I still am hoping it is/was a bad day.
But in my mind, I'm spotting other things.
The problem is, are these new things real? is my breathing getting worse?
Or am I panicking? Is it stress? Is it psychosomatic?
These are answers that I dont know.
Usually, when walking, if I start to feel excessively breathless, it usually means my inner tube as clogged. I am able to take it out and change it and clean the old one. This has pretty much become an automatic movement, kinda like getting a tissue out to blow your nose. Today, a couple of times, I found myself in the midst of changing the tube, however, when looking at the tube I was taking out, it was pretty much clear, not how I would expect it to look if it were clogged.
When I got home, I thought I would pass a suction tube just to make sure there was nothing blocking the end of the tube just incase. If I am honest, I have been avoiding using my suction. I dont like it, but I dont want to get used to having it, I would rather work on strengthening my cough.
The tube passed with only a small amount of resistance, which is odd as there isnt normal any resistance. But it felt kinda different. It felt tighter, more restricted. However, im not guaranteeing this as a symptom as it has been a while since I passed a tube, so it might just be me working myself into a worry.
I'm not overly concerned yet. As I said it could be all kinds of things. My chest could be too dry, it could be the beginning of a chest infection, it could by psychosomatic, it could be that I am over tired, it could be a whole host of things.
The thought is still in the back of my mind though.
Mum said, that while in London, the surgeon said that my lower airway was also narrowing, as in below my trach tube. I didnt know this was possible and I'm still not sure.
I didnt hear him say it, but then that could be a result of crappy hearing and/or post anesthetic brain.
I have not mentioned this to anybody yet. This isnt something I am overly worried about, sure its on my mind, but there is a lot more ahead of it in my mind.
I trust my team and I know that, should it be something like lower arway narrowing, that they will look after me and sort it. In like 9 days time I have an appointment with my surgeon up here where x rays will be run, the week after that I have an ENT appointment with my other surgeon, then I have London. And worst case, it is bad when I get to london, I will be going to theatre that day anyway so they can get a proper look and sort it. In between that, I can (well mum can) phone my ward or the GP will fit me. And of course there is the option regular people have of A&E., though I am told , where possible to avoid A&E. A&E tend to like to want to fiddle and save the day. They like to do procedures in ressus in the name of stabilizing you or assessing you. Heres where memories of being put on CPAP come flooding back so that the doctors can lie me flat enough to attempt for the 12th time to insert an arterial line. Plus A&E, is riddled with infections, which would be bad right now.
So the plan is, to continue to ignore this. I am pretty sure it is going to amount to nothing and I have back up plans. And I am feeling ok in my head space. I can deal with this. This isnt scary, this isnt forever and things ARE going to improve.
Tuesday, May 11, 2010
Die quietly
She sits on her bed, catching her breath.
Just run a neb and suction, with not much relief.
That marks round four of this evening.
Hears mum footsteps as she comes in to her room.
They make eye contact.
Her mum comes and hugs her, saying everything is going to be alright.
That the worst is over.
Explaining that she cares.
Asking if there is anything she can do to help.
She blinks, to clear the tears from her eyes as she rests back on her pillow.
Her back aching from so much coughing.
As her eyes clear she tunes back in to what her mum is really saying.
No there is no hugging.
Hugging is a thing that only happens to keep up appearance with hospital staff.
None of them here.
She tries to focus on what is being said.
But it feels almost as unbelivable as the last image.
She is being lectured.
How there is so much to do, how she should be packing.
As tears begin to form in the corner of her eye
she blinks them back
Her mum storms out
Time to move again.
Yeah as you can guess, I spoke to soon yesterday about feeling better. I have been semi awake since 4am (21 hours ago) I awoke coughing, chocking spluttering and gasping. Old memories come pouring in, I cant go back to this, not now, not ever, but escpially not now.
Felt so rough I actully saw the doctor this evening. She said give the anti biotics a bit longer to kick in. Tole her I was having to run a neb every 30 mins to keep actully keep breathing, she said that is fine and to continue with it if it helps. Well yeah that is helpful, its totally fine, I dont need sleep at all. She said hope you have travel insurance as if things dont improve you will need to be admitted. (Surly it would have been more proactive to admit me now, give me IV drugs and humidity and kick this infections butt before I slide too far?)
If things get bad tonight im to go to A&E. Problem is, My A&E is not my specialist hospital that I was in last time. It is the hospital I have been in a few times since my transplant. It is the hospital where you are pretty much gaurnteed a 2 week stay as it takes that long to actully get a doctor to review you once they ship you to a ward. Its the hospital, where you usually come out with more infections than you went in with. It is not a clean hospital. And yeah, there are certain steps you can take yourself. But when you are given a side room for being immunosuprressed, but then find out that your room, adjoins and shares a bathroom with the side room next door, you begin to worry. When you look outside and see that the side room is being barrier nursed and has infectious signs all over the door, you begin to panic.
A bottle of spray bleach becomes your best friend. But of course when your feeling crap, that isnt always an option. When you enter the bathroom and smell cigarette smoke, you just want out as quick as possible. Coat yourself in alco gel.
Please dont let me get rushed in there before my holidays. My parents need this holiday, I need this holiday. 2 holidays have already been cancled due to me being in hospital, dont make this one the same. Come on chest, start working properly.
Just run a neb and suction, with not much relief.
That marks round four of this evening.
Hears mum footsteps as she comes in to her room.
They make eye contact.
Her mum comes and hugs her, saying everything is going to be alright.
That the worst is over.
Explaining that she cares.
Asking if there is anything she can do to help.
She blinks, to clear the tears from her eyes as she rests back on her pillow.
Her back aching from so much coughing.
As her eyes clear she tunes back in to what her mum is really saying.
No there is no hugging.
Hugging is a thing that only happens to keep up appearance with hospital staff.
None of them here.
She tries to focus on what is being said.
But it feels almost as unbelivable as the last image.
She is being lectured.
How there is so much to do, how she should be packing.
As tears begin to form in the corner of her eye
she blinks them back
Her mum storms out
Time to move again.
Yeah as you can guess, I spoke to soon yesterday about feeling better. I have been semi awake since 4am (21 hours ago) I awoke coughing, chocking spluttering and gasping. Old memories come pouring in, I cant go back to this, not now, not ever, but escpially not now.
4AM
Felt so rough I actully saw the doctor this evening. She said give the anti biotics a bit longer to kick in. Tole her I was having to run a neb every 30 mins to keep actully keep breathing, she said that is fine and to continue with it if it helps. Well yeah that is helpful, its totally fine, I dont need sleep at all. She said hope you have travel insurance as if things dont improve you will need to be admitted. (Surly it would have been more proactive to admit me now, give me IV drugs and humidity and kick this infections butt before I slide too far?)
8pm
If things get bad tonight im to go to A&E. Problem is, My A&E is not my specialist hospital that I was in last time. It is the hospital I have been in a few times since my transplant. It is the hospital where you are pretty much gaurnteed a 2 week stay as it takes that long to actully get a doctor to review you once they ship you to a ward. Its the hospital, where you usually come out with more infections than you went in with. It is not a clean hospital. And yeah, there are certain steps you can take yourself. But when you are given a side room for being immunosuprressed, but then find out that your room, adjoins and shares a bathroom with the side room next door, you begin to worry. When you look outside and see that the side room is being barrier nursed and has infectious signs all over the door, you begin to panic.
A bottle of spray bleach becomes your best friend. But of course when your feeling crap, that isnt always an option. When you enter the bathroom and smell cigarette smoke, you just want out as quick as possible. Coat yourself in alco gel.
Please dont let me get rushed in there before my holidays. My parents need this holiday, I need this holiday. 2 holidays have already been cancled due to me being in hospital, dont make this one the same. Come on chest, start working properly.
Now
Friday, May 07, 2010
Some days
I wish that things were more predictable.
Some days, I am pretty normal, you would know from looking at me that there is anything wrong. I can push myself and I can have good days, I can really push and have a couple of good days. I can to a point put a front on and grit my teeth and get on with things, without anyone knowing that I am feeling rough.
But then other days, days like today. I just feel so weary and tired that I have not the ability to care about keeping up appearances.
I slept well last night and got plenty of sleep. I did go out yesterday, but it was for a short time and I didnt push myself I just took things slowly and such.
And then I awoke this morning, and all I wanted to do was curl up and sleep for another few hours. I forced myself to get up and dressed. My usual routine now would be to help mum with dinner then we usually do something, like go for bread and milk and such. But I just didnt have the energy. I sat in the chair, staring into space. I managed to go out and get a drink just as dinner was done. I sat watching tv after dinner with my mum, shivering and feeling further exhausted.
I went up stairs to get a jumper, sat on my bed with my jumper on catching my breath and just couldnt move. If I was staying in I would normally play on the computer or read or something, but instead, I ended up curled up kinda drifting between sleep and awake for about 3 hours.
I had a routine doctors appointment to go to, to get my holiday meds sorted. Managed this, but had to ask mum to drive me as I just didnt feel up to driving.. Went home and curled up on the sofa. Didnt help with tea, didnt wash the tea dishes. Dragged myself upto bed, put the tv (which I hardly ever do) and just lay watching it all evening, I dont even know what I watched.
I cant even sleep in tomorrow, I have to be up mega early (for me anyways) as I have Liver clinic in Leeds. First one since I got trach. So thats about a 80 minute drive each way, plus time in the middle for bloods and examinations and speak to the doctors. blah. My dad has altered his shifts to take me so that he can drive. I just hope I dont feel as exhausted tomorrow.
oh and as for the doctors, my swab came back. I have cleared the staphylococcus but the pseudomonas is still present. I dont have a temperature, so it does seem to be just in my trach site at the moment, however, I have to do a sputum test first thing in the morning (joy of joys.) and have that sent off to be tested. Then I have a nice course of cipro to complete. Which I hope work as I finish them the day I go on holiday so if it dosnt clear it up, it will have to stay there for 2 weeks.
On that note, I can barley keep my eyes open. The only reason Im sitting here writting is because I forced myself to run my nebs, though it was a battle. So im going to crawl into bed now. And be up in 6.5 hours.
Some days, I am pretty normal, you would know from looking at me that there is anything wrong. I can push myself and I can have good days, I can really push and have a couple of good days. I can to a point put a front on and grit my teeth and get on with things, without anyone knowing that I am feeling rough.
But then other days, days like today. I just feel so weary and tired that I have not the ability to care about keeping up appearances.
I slept well last night and got plenty of sleep. I did go out yesterday, but it was for a short time and I didnt push myself I just took things slowly and such.
And then I awoke this morning, and all I wanted to do was curl up and sleep for another few hours. I forced myself to get up and dressed. My usual routine now would be to help mum with dinner then we usually do something, like go for bread and milk and such. But I just didnt have the energy. I sat in the chair, staring into space. I managed to go out and get a drink just as dinner was done. I sat watching tv after dinner with my mum, shivering and feeling further exhausted.
I went up stairs to get a jumper, sat on my bed with my jumper on catching my breath and just couldnt move. If I was staying in I would normally play on the computer or read or something, but instead, I ended up curled up kinda drifting between sleep and awake for about 3 hours.
I had a routine doctors appointment to go to, to get my holiday meds sorted. Managed this, but had to ask mum to drive me as I just didnt feel up to driving.. Went home and curled up on the sofa. Didnt help with tea, didnt wash the tea dishes. Dragged myself upto bed, put the tv (which I hardly ever do) and just lay watching it all evening, I dont even know what I watched.
I cant even sleep in tomorrow, I have to be up mega early (for me anyways) as I have Liver clinic in Leeds. First one since I got trach. So thats about a 80 minute drive each way, plus time in the middle for bloods and examinations and speak to the doctors. blah. My dad has altered his shifts to take me so that he can drive. I just hope I dont feel as exhausted tomorrow.
oh and as for the doctors, my swab came back. I have cleared the staphylococcus but the pseudomonas is still present. I dont have a temperature, so it does seem to be just in my trach site at the moment, however, I have to do a sputum test first thing in the morning (joy of joys.) and have that sent off to be tested. Then I have a nice course of cipro to complete. Which I hope work as I finish them the day I go on holiday so if it dosnt clear it up, it will have to stay there for 2 weeks.
On that note, I can barley keep my eyes open. The only reason Im sitting here writting is because I forced myself to run my nebs, though it was a battle. So im going to crawl into bed now. And be up in 6.5 hours.
Thursday, April 15, 2010
Wrongful disappointment
My feelings are everywhere tonight.
I feel like crap, when I have no right to and should technically be happy about it.
I feel rather guilty about it, but im going to type it out anyway, I always promised to bare all, even if I am not to proud or happy with it.
So had a doctors appointment today. I made it to discuss the Cushings. The only appointment they had was at 8am, now I am not a morning person and dont usually get up till after dinner, so it was might difficult actually moving at that time of the morning.
So I showed my GP the letter and she read it through. She then said that she didnt know I had it and that it must be a mistake otherwise I would have been referred to an endocrinologist. She said she would look into it and get back to me.
Well, she rang up tonight and spoke to my mum.
I do have cushings, but I not proper cushings. Cushings is caused by a tumor on your pituitary glad or adrenal glad, mine however is caused by the steroids I was taking while ill. So the good news is that I shouldnt need any tests are surgery or medication to fix it. It will just taper out itself within about 6 months.
Yeah see, I should feel good.
But I dont.
Cushings fitted with everything. The reason I was so tired all the time, the sleepiness, being so fat, the high blood pressure. Yes some of that could still be caused by the cushings, but they said 6 months. Its 5 months now since I stopped them. I should be feeling better or at least begining to. But im not. I feel like I am going downhill. I sleep constanly, im putting weight on faster than ever, my mood swings are getting worse. But its all down to me.
I thought the cushings was going to be something that I had had for a while, the reason why i have felt so shit for so long. Perhaps even have blamed it on my whole being crazy and spending time on a psych ward.
But its not, it dosnt go that far back.
So now it is truly time to face upto what a fat lazy failure I am. Trying to make excuses for why I am so lazy and staying in bed.
I feel like I have lied to myself.
And I know that I should be pleased that I dont have a tumor.
But by having it, it would have meant I could be fixed. But this is who I am. This big lazy blob.
I hate myself so much, and now I need to face that it truly is me I hate. It is my personality, which you can hardly change.
I have not cried through any of this, but now I cant stop the tears.
I need to destruct. I need to show my body and my mind how much I hate it. So many thoughts and feelings. I want out of this body. I want out of this life.
I have had enough fighting.
Im tired
and usless
and disgusting
I feel like crap, when I have no right to and should technically be happy about it.
I feel rather guilty about it, but im going to type it out anyway, I always promised to bare all, even if I am not to proud or happy with it.
So had a doctors appointment today. I made it to discuss the Cushings. The only appointment they had was at 8am, now I am not a morning person and dont usually get up till after dinner, so it was might difficult actually moving at that time of the morning.
So I showed my GP the letter and she read it through. She then said that she didnt know I had it and that it must be a mistake otherwise I would have been referred to an endocrinologist. She said she would look into it and get back to me.
Well, she rang up tonight and spoke to my mum.
I do have cushings, but I not proper cushings. Cushings is caused by a tumor on your pituitary glad or adrenal glad, mine however is caused by the steroids I was taking while ill. So the good news is that I shouldnt need any tests are surgery or medication to fix it. It will just taper out itself within about 6 months.
Yeah see, I should feel good.
But I dont.
Cushings fitted with everything. The reason I was so tired all the time, the sleepiness, being so fat, the high blood pressure. Yes some of that could still be caused by the cushings, but they said 6 months. Its 5 months now since I stopped them. I should be feeling better or at least begining to. But im not. I feel like I am going downhill. I sleep constanly, im putting weight on faster than ever, my mood swings are getting worse. But its all down to me.
I thought the cushings was going to be something that I had had for a while, the reason why i have felt so shit for so long. Perhaps even have blamed it on my whole being crazy and spending time on a psych ward.
But its not, it dosnt go that far back.
So now it is truly time to face upto what a fat lazy failure I am. Trying to make excuses for why I am so lazy and staying in bed.
I feel like I have lied to myself.
And I know that I should be pleased that I dont have a tumor.
But by having it, it would have meant I could be fixed. But this is who I am. This big lazy blob.
I hate myself so much, and now I need to face that it truly is me I hate. It is my personality, which you can hardly change.
I have not cried through any of this, but now I cant stop the tears.
I need to destruct. I need to show my body and my mind how much I hate it. So many thoughts and feelings. I want out of this body. I want out of this life.
I have had enough fighting.
Im tired
and usless
and disgusting
Friday, March 19, 2010
Double standards
Advanced warning: This is a pissed of uber annoyed post and will probably contain a fair bit of swearing. Oh what fun.
I am fucking fed up of your bloody double standards mrs oh so fucking perfect!
I was sick, from Thursday through to Wednesday. However, I did not moan, I got on with things. You had a right nark on with me on Sunday because it was mothers day and meant to be your day and yet I was being lazy. (It didnt matter to you that I felt absolutely rotten and it hurt to move or do anything) So I did what I could. I went to the cemetery even though all I wanted to do was curl up. Then when I sat down to recover for like 20mins you start kicking my possesions around 'because I shouldnt dare have anything of mine downstairs!' I was basically told to suck it up and get on with things when I was unwell.
But then you pick up the same virus from me, as does my niece. My niece, like me gets on with it and dosnt make a fuss. But you get, and its the end of the fucking world! You had to go to bed very early, then bring in a clear basin that you puked in to show me how sick you was. (Yes at the time I was still throwing up myself but I didnt bother taking the time to show you... mhmm why did i do this? maybe because im not a sick twat!)
So then you lie on the couch all day and cant possibly move, not even to get your own drink (Bear in mind if the illness progresses the same, this is the day I was being told off for not doing enough) Then in the evening you were offered food but said you would get something later. Then you go to bed in a sulk because dad didnt offer to make you something to eat later on!
All day you had go at me, that I didnt have to stress so much about getting dads tea done and stuff because he is perfectly capable of doing it himself. Then the next day when I didnt do much, you told me off because dad has been working all the hours and shouldnt have to come home and do anything in the house! Make up your bloody mind!
You tell me I am lazy and shouldnt sleep so much. And then when the doctor asks, you tell her that I need my sleep because my nights are disturbed. And oh joy, the doctor told you today that if oyu didnt begin to feel better by saturday to not go back to work. Gee thanks Dr. You know my mum, you know she will milk this for all its worth. So now it looks like I am going to have to put up with her all next week to as i bet she stays off.
Mum said something before in the car. And I mentioned that we had the same thing so it will probably run the same course and if anything hers should clear quicker than mine as she is healthier than and with a proper immune system. Her reply: But I have been much sicker than you. I just looked at her. And she started explaining about throwing up and such. I just said... oh right, I didnt have any of then? I must have dreamt it. Just because I dont bloody go on about it permanently dosnt mean I dont have.
Its like the other day when a doctor was going on about how high at risk I am from cancer due to my medications. We come out and mum goes, yeah your probably about the same risk as me now, because I got sunburn as kid!! FFS stop comparing, its not a bloody competition to see who is the fucking sickest. Because to be honest with you, you can be the sickest! You can take all my pills and go through all the surgeries and procedures and the trouble doing things and everything that goes with it!
Argh. Majorly pissed with her!
Oh and then she sees that I have just taken my bedding straight out the tumble dryer and am folding it and she starts having a go at me because its creased and its never creased when she does it. For one its bedding, I dont really care if its creased! And for 2, what the fuck am I suppossed to do? Iron it before I put it in the dryer then fold it up all nice and ask the dryer nicely not to toss it around to much. Fucking get over it loserhead!
Im on a slippery slope right now. I gave up my 2 months free. I dont want to be free anymore. I miss the control and all the other feelings of release that come with it. Its funny, I was looking at pics earlier from a time when I was a mess and causing a pretty bad mess of myself. You can see my hand in one of them. With perfectly manicured nails all painted and shinny with the french tip. Good how you can be totally falling apart, yet on the outside, everything looks rosey. Time for a relapse I think. I still have it in me, I doubted it at one point but I know its still there.
I am fucking fed up of your bloody double standards mrs oh so fucking perfect!
I was sick, from Thursday through to Wednesday. However, I did not moan, I got on with things. You had a right nark on with me on Sunday because it was mothers day and meant to be your day and yet I was being lazy. (It didnt matter to you that I felt absolutely rotten and it hurt to move or do anything) So I did what I could. I went to the cemetery even though all I wanted to do was curl up. Then when I sat down to recover for like 20mins you start kicking my possesions around 'because I shouldnt dare have anything of mine downstairs!' I was basically told to suck it up and get on with things when I was unwell.
But then you pick up the same virus from me, as does my niece. My niece, like me gets on with it and dosnt make a fuss. But you get, and its the end of the fucking world! You had to go to bed very early, then bring in a clear basin that you puked in to show me how sick you was. (Yes at the time I was still throwing up myself but I didnt bother taking the time to show you... mhmm why did i do this? maybe because im not a sick twat!)
So then you lie on the couch all day and cant possibly move, not even to get your own drink (Bear in mind if the illness progresses the same, this is the day I was being told off for not doing enough) Then in the evening you were offered food but said you would get something later. Then you go to bed in a sulk because dad didnt offer to make you something to eat later on!
All day you had go at me, that I didnt have to stress so much about getting dads tea done and stuff because he is perfectly capable of doing it himself. Then the next day when I didnt do much, you told me off because dad has been working all the hours and shouldnt have to come home and do anything in the house! Make up your bloody mind!
You tell me I am lazy and shouldnt sleep so much. And then when the doctor asks, you tell her that I need my sleep because my nights are disturbed. And oh joy, the doctor told you today that if oyu didnt begin to feel better by saturday to not go back to work. Gee thanks Dr. You know my mum, you know she will milk this for all its worth. So now it looks like I am going to have to put up with her all next week to as i bet she stays off.
Mum said something before in the car. And I mentioned that we had the same thing so it will probably run the same course and if anything hers should clear quicker than mine as she is healthier than and with a proper immune system. Her reply: But I have been much sicker than you. I just looked at her. And she started explaining about throwing up and such. I just said... oh right, I didnt have any of then? I must have dreamt it. Just because I dont bloody go on about it permanently dosnt mean I dont have.
Its like the other day when a doctor was going on about how high at risk I am from cancer due to my medications. We come out and mum goes, yeah your probably about the same risk as me now, because I got sunburn as kid!! FFS stop comparing, its not a bloody competition to see who is the fucking sickest. Because to be honest with you, you can be the sickest! You can take all my pills and go through all the surgeries and procedures and the trouble doing things and everything that goes with it!
Argh. Majorly pissed with her!
Oh and then she sees that I have just taken my bedding straight out the tumble dryer and am folding it and she starts having a go at me because its creased and its never creased when she does it. For one its bedding, I dont really care if its creased! And for 2, what the fuck am I suppossed to do? Iron it before I put it in the dryer then fold it up all nice and ask the dryer nicely not to toss it around to much. Fucking get over it loserhead!
Im on a slippery slope right now. I gave up my 2 months free. I dont want to be free anymore. I miss the control and all the other feelings of release that come with it. Its funny, I was looking at pics earlier from a time when I was a mess and causing a pretty bad mess of myself. You can see my hand in one of them. With perfectly manicured nails all painted and shinny with the french tip. Good how you can be totally falling apart, yet on the outside, everything looks rosey. Time for a relapse I think. I still have it in me, I doubted it at one point but I know its still there.
Thursday, February 25, 2010
hello brickwall
urgh
Ever feel like no one knows what they are actually doing?
When I saw my GP on Monday, I mentioned that I was still having trouble with the amount of crap and the consistency of it that I was coughing off my chest. The GP didnt know what to suggest but said she would phone the trachy nurse and get back to me.
Well the doctors rang (in the morning when they know and have down on file that I have no voice and I am home alone) to tell me that the doctor had spoken to the trachy nurse. The nurse thinks maybe my tube needs changing (even though I have had this problem continuously since getting the damn tube and its still been present after the last 3 tube changes i have had) or that it might be my central heating (even though I had the same trouble in the hospital where the heating was different.)
So the doctors where phoning me to tell me that I now need to run saline nebs 4 times a day. I explained that I have been running not only saline nebs but also hypertonic (6%) saline nebs 4 times a day each since I got out of hospital and for most the time I was in hospital. The surgery seemed surprised and asked me where I was getting the supplies to do this from?!?!? ermm on repeat prescription from you...... The GP even commented last time I saw her that it was excessive being tied to a nebuliser 8 times a day. *headdesk* She said she would speak to the doc and phone me back.
So when she phoned back the reply was 'Yeah the doctor still wants you to run these saline nebs 4 times a day please till your next clinic appointment and there is a script waiting here for you to pick it up' urmm gee thanks, Ill pick it up next time im there, I only just got my months supply off you 3 days ago so I have plenty here.
Its so frustrating! No one seems to have a clue and the trachy nurses answer to every problem is you need your tube changing!
Right now, I am searching through the drug tariff to get the codes for all the equipment I need to order and such. This shouldnt be my job! What would someone else who didnt know how to search and find this stuff do?!?! The nurses ordered me specialist dressings ermm about 3 weeks ago, still no sign. Trachy services around here really are crap and they dont have a clue how to deal with one.
And that is my little rant for the night. Im really ticked off things around here. Almost makes me want to go out and fix it. hmm one day maybe.
Ever feel like no one knows what they are actually doing?
When I saw my GP on Monday, I mentioned that I was still having trouble with the amount of crap and the consistency of it that I was coughing off my chest. The GP didnt know what to suggest but said she would phone the trachy nurse and get back to me.
Well the doctors rang (in the morning when they know and have down on file that I have no voice and I am home alone) to tell me that the doctor had spoken to the trachy nurse. The nurse thinks maybe my tube needs changing (even though I have had this problem continuously since getting the damn tube and its still been present after the last 3 tube changes i have had) or that it might be my central heating (even though I had the same trouble in the hospital where the heating was different.)
So the doctors where phoning me to tell me that I now need to run saline nebs 4 times a day. I explained that I have been running not only saline nebs but also hypertonic (6%) saline nebs 4 times a day each since I got out of hospital and for most the time I was in hospital. The surgery seemed surprised and asked me where I was getting the supplies to do this from?!?!? ermm on repeat prescription from you...... The GP even commented last time I saw her that it was excessive being tied to a nebuliser 8 times a day. *headdesk* She said she would speak to the doc and phone me back.
So when she phoned back the reply was 'Yeah the doctor still wants you to run these saline nebs 4 times a day please till your next clinic appointment and there is a script waiting here for you to pick it up' urmm gee thanks, Ill pick it up next time im there, I only just got my months supply off you 3 days ago so I have plenty here.
Its so frustrating! No one seems to have a clue and the trachy nurses answer to every problem is you need your tube changing!
Right now, I am searching through the drug tariff to get the codes for all the equipment I need to order and such. This shouldnt be my job! What would someone else who didnt know how to search and find this stuff do?!?! The nurses ordered me specialist dressings ermm about 3 weeks ago, still no sign. Trachy services around here really are crap and they dont have a clue how to deal with one.
And that is my little rant for the night. Im really ticked off things around here. Almost makes me want to go out and fix it. hmm one day maybe.
Tonights cocktail. Pills the bain of my life. or should that be nebs the bain of my life after today.
Sunday, November 15, 2009
Big step backwards
When I was first discharged from hospital after my transplant, I had to basically learn to walk again. Most of my muscles had wasted away with lying still and not moving for 3 months. After 3 months on a ventilator, even breathing on my own seemed a huge task. But once I started getting about, I swore that I would not go back to being like that. Spending most my time in a wheelchair, then on to a walker, upgrading to crutches. It was a long task, it took months, well more so years as I kept hitting set backs, like needing further surgery. But I did it.
When I was in ICU last month, as soon as I was awake, I started doing all my old physio exercises I could remember so that I didnt seize up. Within hours of getting the breathing tube out, I was sat up and sat out by the next day.
But today, was just to tiring. It was a simple shop, we only had 40 minutes till closing time. I ran my nebs sitting in the car as I was rattling without them. But walking from the car to the shop entrance I was gasping. I couldnt do it. So I agreed to use a wheelchair. This is a huge step back. It feels like I have done everything I can to avoid this, yet have ended up here just the same. Why did I bother to work for it?
The worst part is knowing that things might not get better. Sure I can go for this permeant tracheostomy, but the one the surgeon wants to put in will be a closed system so I still breathe through my mouth as opposed to my neck. But my throat is still going to be narrow, so I doubt it will make much difference. I need to speak to my surgeon, but I dont see him for another week. Wish it was tomorrow I was seeing him, but he is away. A week seems like a long time when every breath hurts.
Mum asked me what I wanted for christmas, I said jokingly a new throat please. She welled up and said if she could she would have by now. She tried talking to me about this trachy the other day but again she kept welling up. I couldnt discuss it.
In other news, I am being referred to a cardiologist. After the GP doubling my blood pressure meds, it hasnt even started to come down and she dosnt want to take chances while its so high. So theres someone else I have to go see. Dont know when thats going to come through. Feel like I am falling apart.
And this has taken twice as long to type. stupid tears. I wish I had the strength that others seem to have. The type that fight on bravely and courageously instead of being a whiner like me. Oh what I would give right now to paint a happy face on things. But its hard enough keeping that face there infront of family and college people, let alone when im alone.
When I was in ICU last month, as soon as I was awake, I started doing all my old physio exercises I could remember so that I didnt seize up. Within hours of getting the breathing tube out, I was sat up and sat out by the next day.
But today, was just to tiring. It was a simple shop, we only had 40 minutes till closing time. I ran my nebs sitting in the car as I was rattling without them. But walking from the car to the shop entrance I was gasping. I couldnt do it. So I agreed to use a wheelchair. This is a huge step back. It feels like I have done everything I can to avoid this, yet have ended up here just the same. Why did I bother to work for it?
The worst part is knowing that things might not get better. Sure I can go for this permeant tracheostomy, but the one the surgeon wants to put in will be a closed system so I still breathe through my mouth as opposed to my neck. But my throat is still going to be narrow, so I doubt it will make much difference. I need to speak to my surgeon, but I dont see him for another week. Wish it was tomorrow I was seeing him, but he is away. A week seems like a long time when every breath hurts.
Mum asked me what I wanted for christmas, I said jokingly a new throat please. She welled up and said if she could she would have by now. She tried talking to me about this trachy the other day but again she kept welling up. I couldnt discuss it.
In other news, I am being referred to a cardiologist. After the GP doubling my blood pressure meds, it hasnt even started to come down and she dosnt want to take chances while its so high. So theres someone else I have to go see. Dont know when thats going to come through. Feel like I am falling apart.
And this has taken twice as long to type. stupid tears. I wish I had the strength that others seem to have. The type that fight on bravely and courageously instead of being a whiner like me. Oh what I would give right now to paint a happy face on things. But its hard enough keeping that face there infront of family and college people, let alone when im alone.
Tuesday, November 10, 2009
Onwards we go
Today has been hard.
I am really bad at getting myself off the internet of a night and into bed. It seems once bed time starts ticking round, I remember all kinds that I have to do and as a result dont get to sleep till stupid o'clock. Last night it was about 1am. This would normally be fine, but I knew that i had to be up at 7:15 for college. Still I could cope with that. Except that yet again at 3 I woke up gasping as if my throat was closing. Sleepily sat up and set my nebuliser up and ran that through for about 20 minutes till I could breathe again and went back to sleep. Woke up again at 5:30 once again unable to breathe properly. It does clear pretty easy with a neb, but its the effort of waking up, plugging in the machine (Its on the other side of my double bed) and sitting there while it runs.
So I went to college, first lesson, so less than an hour since I had last ran my nebs. Went to ask a question as I was stuck with my virtual networking server and nothing came out. My voice completely died. This made it really hard to keep up with the lesson. I missed last weeks lesson as I that was when I was having my bronchoscopy so I had work to catch up on. But could I find out what work I needed to catch up on? no not really.
By second lesson, I was ready to go home. My breathing started to feel tight again. Changing classrooms, I stopped at the loo in between so I could sit down and get my breathe back. I managed to make it through all 3 of my lessons, but it was getting harder and harder. I was literally sucking the air into my lungs. It was starting to get scary, at one point I thought I was going to pass out and I couldnt cough anything up as my throat was to dry to shift anything. I started thinking about what would happen if I collapsed in college. I have no idea. None of the tutors are medically trained and I would feel so ashamed if anything like that happened.
Even my tutor comment on my breathing today. He kept asking me through the lesson if I was ok, to which I kept nodding. After the lesson he said told me that I sounded awful and that I should go home and rest. He also said he was proud of the way I was still carrying on with the course and coming in right after being discharged from hospital and stuff.
I slowly walked to my car, which was parked right next to the door. I was sucking in breath as best I could but it felt like my lungs where on fire and I had to sit still in the car for about 15 minutes while I regained my breath enough to drive.
I cant live like this. Its driving me nuts not being able to even walk between rooms. I emailed my surgeon last night. (remember what I said about always remembering around bed time that I had things to do, well it was kinda midnight) Well anyway, he got my email this morning and rang the house phone to speak to me. When he got no answer he started panicking incase I had arrested again. He phoned my mum at work and asked her why I wasnt answering the phone. She rang me to make sure I was ok and stuff.
So I havnt actually spoken to my surgeon, but he basically told mum that there is nothing he can do really as every time he does anything, even a scope, i get worse. He said that if I am really struggling then to phone the ward but he dosnt know what else to suggest. He is also out of the country next week so I need to try and make sure I dont get ill then. Dont think i would trust any of the other surgeons in the hospital as I have always been under the same one. Just have to try to preserver.
It would also appear that the Amlodipine has not started to work yet even after doubling the dose. I had to go for an ECG yesterday morning and my pulse then was 127. Taken the ECG to the doctors so I suppose I will find out the results of that on Thursday evening at my appointment. Also had to go for yet more blood tests, this time a fasting glucose and a hemoglobin. Again, will get the results on Thursday.
Im just so tired of everything at the moment. I have a ton of work to do for uni and I just cant concentrate on it. I wonder if my oxygen levels effect my concentration? Maybe, and I really hate to say this, but I am thinking about get the permeant tracheotomy. I cant live like this unable to move anywhere and feeling like im going to pass out whenever I do move. I really really dont want it. But it would beat being the way I am now. Oh well onwards we go I suppose, just need to try and stay positive. There are so many people who are worse off than me. Least things like my liver function and kidney function tests are all fine so the transplant centre are happy with me even if none of my other teams are. hmm.
I am really bad at getting myself off the internet of a night and into bed. It seems once bed time starts ticking round, I remember all kinds that I have to do and as a result dont get to sleep till stupid o'clock. Last night it was about 1am. This would normally be fine, but I knew that i had to be up at 7:15 for college. Still I could cope with that. Except that yet again at 3 I woke up gasping as if my throat was closing. Sleepily sat up and set my nebuliser up and ran that through for about 20 minutes till I could breathe again and went back to sleep. Woke up again at 5:30 once again unable to breathe properly. It does clear pretty easy with a neb, but its the effort of waking up, plugging in the machine (Its on the other side of my double bed) and sitting there while it runs.
So I went to college, first lesson, so less than an hour since I had last ran my nebs. Went to ask a question as I was stuck with my virtual networking server and nothing came out. My voice completely died. This made it really hard to keep up with the lesson. I missed last weeks lesson as I that was when I was having my bronchoscopy so I had work to catch up on. But could I find out what work I needed to catch up on? no not really.
By second lesson, I was ready to go home. My breathing started to feel tight again. Changing classrooms, I stopped at the loo in between so I could sit down and get my breathe back. I managed to make it through all 3 of my lessons, but it was getting harder and harder. I was literally sucking the air into my lungs. It was starting to get scary, at one point I thought I was going to pass out and I couldnt cough anything up as my throat was to dry to shift anything. I started thinking about what would happen if I collapsed in college. I have no idea. None of the tutors are medically trained and I would feel so ashamed if anything like that happened.
Even my tutor comment on my breathing today. He kept asking me through the lesson if I was ok, to which I kept nodding. After the lesson he said told me that I sounded awful and that I should go home and rest. He also said he was proud of the way I was still carrying on with the course and coming in right after being discharged from hospital and stuff.
I slowly walked to my car, which was parked right next to the door. I was sucking in breath as best I could but it felt like my lungs where on fire and I had to sit still in the car for about 15 minutes while I regained my breath enough to drive.
I cant live like this. Its driving me nuts not being able to even walk between rooms. I emailed my surgeon last night. (remember what I said about always remembering around bed time that I had things to do, well it was kinda midnight) Well anyway, he got my email this morning and rang the house phone to speak to me. When he got no answer he started panicking incase I had arrested again. He phoned my mum at work and asked her why I wasnt answering the phone. She rang me to make sure I was ok and stuff.
So I havnt actually spoken to my surgeon, but he basically told mum that there is nothing he can do really as every time he does anything, even a scope, i get worse. He said that if I am really struggling then to phone the ward but he dosnt know what else to suggest. He is also out of the country next week so I need to try and make sure I dont get ill then. Dont think i would trust any of the other surgeons in the hospital as I have always been under the same one. Just have to try to preserver.
It would also appear that the Amlodipine has not started to work yet even after doubling the dose. I had to go for an ECG yesterday morning and my pulse then was 127. Taken the ECG to the doctors so I suppose I will find out the results of that on Thursday evening at my appointment. Also had to go for yet more blood tests, this time a fasting glucose and a hemoglobin. Again, will get the results on Thursday.
Im just so tired of everything at the moment. I have a ton of work to do for uni and I just cant concentrate on it. I wonder if my oxygen levels effect my concentration? Maybe, and I really hate to say this, but I am thinking about get the permeant tracheotomy. I cant live like this unable to move anywhere and feeling like im going to pass out whenever I do move. I really really dont want it. But it would beat being the way I am now. Oh well onwards we go I suppose, just need to try and stay positive. There are so many people who are worse off than me. Least things like my liver function and kidney function tests are all fine so the transplant centre are happy with me even if none of my other teams are. hmm.
Monday, October 26, 2009
Interview, surgeons, doctors and nurses
Such an exciting day.
Started off that I had to get up on a day which is normally a day off, but I cant complain as I am off all week for half term. Had to ring the doctors, who wanted me to come in right away to see a different doctor from the other day. Apparently the one I saw the other day only works Thursday and Fridays. I told them I couldnt as I had an interview to go to and could I make it the afternoon. They said they would ask the doctor if this was ok and get back to me. So there is me waiting to leave and having to hang around waiting for them to call. They said I could come in in the afternoon and made me an appointment.
Drove to college to pick Jay up and we went to our interview. The place is only small and the work they want me to do isn't that hard, but involves talking to the person who built the machine in the company a lot. Its basically digitalizing a load of drawings to make a instruction manual. Not really computer work, but it will suffice for a placement. I now have to draw a up a proposal and submit it to them.
Then I had to drive to the other end of the city for my appointment with my surgeon. He seems pleased that things hadnt got any worse. I mentioned to him that my GP had been trying to get in touch with him and he went oh yeah, didnt know you where having a problem with your blood pressure. I felt like saying I did tell you several times while I was in that it was high you just said it was nothing to worry about. Anyway, he checked it and it was still high (180/120 Pulse 120). He said it is probably the steroids (prednisone.) He lowered my dose from 20mg to 10mg last week and said to stop it completely next sunday. He will then see me in two weeks and we will see how it is then.
I was absolutely shattered, the walk over to the hospital and back really takes it out of me and I had to stop halfway to get my breath back. So after dinner, even though I didnt have long till my GP appointment I went for a nap. (I love day sleep. 1 hour of day sleep for me is like 5 hours of night sleep)
So got to my GP appointment and told her what the surgeon had said. Apparently he is phoning on Thursday to speak to my regular GP. She said she still wasnt happy to just leave me with high blood pressure and keep checking it to make sure it is the medication. She then checked my blood pressure and it had come down to 150/100 which wasnt too bad. I explained I had only just woke up and such and that it was still high when I had it done in the morning. So she decided to start me on medication for the time being and I am to go back next week and see my regular GP. By that time I should be off the steroids and we can see if my blood pressure has normalized.
She also had my blood results from friday, well most of them, the thyroid ones hadnt come back yet. My white cell count is high and my cholesterol was high at 5.5. She said both of thee could have been due to stress and that they would be repeated next week.
So now I have had more medication added to my many tablets. I am now taking 5mg of the beta blocker amlodipine. Started it tonight so we shall see. While I was in the surgery, the nurse saw me and pulled me in to give me the flu jab. Great I thought, save me coming back, but then she read my file and saw I was on steroids but coming off them. She asked me to wait till next week for it, so I have booked in for the same time as my GP appointment. She also wants me to have the swine flu one. Not sure If im going to get that or not yet. I also need to have the pneumoccoal vaccine. Oh what joy, I will be a human pin cushion.
Im still feeling pretty low an shit to be honest. Having a lot of urges to Self Harm and have absolutely no motivation. Starting to feel suicidal again as well. I know the GP reduced my venlafaxine, but I wouldnt have thought that would have had an effect yet. She told me to lower it on friday. Just hope this is a little phase that will pass.
Going to try and force myself to work on one of my assignments tomorrow. I said ideally I wanted to get two of them out the way with by the end of this week so I had better get cracking on it. Just hope these meds dont make me to tired, I already feel drained.
Started off that I had to get up on a day which is normally a day off, but I cant complain as I am off all week for half term. Had to ring the doctors, who wanted me to come in right away to see a different doctor from the other day. Apparently the one I saw the other day only works Thursday and Fridays. I told them I couldnt as I had an interview to go to and could I make it the afternoon. They said they would ask the doctor if this was ok and get back to me. So there is me waiting to leave and having to hang around waiting for them to call. They said I could come in in the afternoon and made me an appointment.
Drove to college to pick Jay up and we went to our interview. The place is only small and the work they want me to do isn't that hard, but involves talking to the person who built the machine in the company a lot. Its basically digitalizing a load of drawings to make a instruction manual. Not really computer work, but it will suffice for a placement. I now have to draw a up a proposal and submit it to them.
Then I had to drive to the other end of the city for my appointment with my surgeon. He seems pleased that things hadnt got any worse. I mentioned to him that my GP had been trying to get in touch with him and he went oh yeah, didnt know you where having a problem with your blood pressure. I felt like saying I did tell you several times while I was in that it was high you just said it was nothing to worry about. Anyway, he checked it and it was still high (180/120 Pulse 120). He said it is probably the steroids (prednisone.) He lowered my dose from 20mg to 10mg last week and said to stop it completely next sunday. He will then see me in two weeks and we will see how it is then.
I was absolutely shattered, the walk over to the hospital and back really takes it out of me and I had to stop halfway to get my breath back. So after dinner, even though I didnt have long till my GP appointment I went for a nap. (I love day sleep. 1 hour of day sleep for me is like 5 hours of night sleep)
She also had my blood results from friday, well most of them, the thyroid ones hadnt come back yet. My white cell count is high and my cholesterol was high at 5.5. She said both of thee could have been due to stress and that they would be repeated next week.
So now I have had more medication added to my many tablets. I am now taking 5mg of the beta blocker amlodipine. Started it tonight so we shall see. While I was in the surgery, the nurse saw me and pulled me in to give me the flu jab. Great I thought, save me coming back, but then she read my file and saw I was on steroids but coming off them. She asked me to wait till next week for it, so I have booked in for the same time as my GP appointment. She also wants me to have the swine flu one. Not sure If im going to get that or not yet. I also need to have the pneumoccoal vaccine. Oh what joy, I will be a human pin cushion.
Im still feeling pretty low an shit to be honest. Having a lot of urges to Self Harm and have absolutely no motivation. Starting to feel suicidal again as well. I know the GP reduced my venlafaxine, but I wouldnt have thought that would have had an effect yet. She told me to lower it on friday. Just hope this is a little phase that will pass.
Going to try and force myself to work on one of my assignments tomorrow. I said ideally I wanted to get two of them out the way with by the end of this week so I had better get cracking on it. Just hope these meds dont make me to tired, I already feel drained.
Saturday, October 24, 2009
Panicking that GP
Uni seems to be going okay, although I have a ton of work to do and absolutely no motivation to do it. I have half term next week so Im going to make sure I work on some of the assignments then. I have on assignment due in on the 5th November, which I want finished by the end of half term and I really want to get a good start on Sid assignment. too.
I seem to be getting on better in Uni. I actually talk to all the lads now and even went over to subway with them for dinner on Wednesday. That was hard work, keeping up with them without panting. I made an excuse that I was going the loo and would meet them later so that I could walk a different way only a bit slower.
Was allowed to leave early (3 instead of 4) which was good because I was beginning to rattle again. Mum was putting the tea on when I got in. She was son having a go at me over how lazy I am. I told her im tired all the time and if I go to uni, I dont have the energy to come home and do stuff. To which she told me that I was going to be like this for the foreseeable future so I should just get used to it and stop using it as an excuse to be lazy. Yeah because just knowing that I am going to be like this means I can suddenly do things that I couldnt before I knew i was going to be like this. just urgh. We had a row about how many times i had done the dishes ha. There was only one day i didnt do them, but she claims i hadnt done them all week.
So anyway, 5 came and I had a GP appointment, to which I attended with my mum and a whole list of problems. I needed to check I could still get the flu jab with my current meds as I wasnt sure with being on steroids. I can and so need to book this in soon. I needed to tell her about ditching my psych and ask her to fill the form in for my disabled badge application. I also mentioned that I had a terrible hand tremor that was worse of a morning and that there had been some concerns about my blood pressure and pulse while I was in hospital.
So she checked my bp and then checked again on my other arm and it was high. (190/120, pulse 128) She seemed shocked and read through my notes. She then asked me to wait outside as she wanted to do it again in 30mins to make sure it wasnt a one off or from exertion. I certainly got a long appointment. She was shocked that my BP had been left as high as it was and only let me go home on the condition that I wasnt alone and if I felt ill, I was to go straight to A&E and she would phone me the next day when she had more info.
So today, she rang me and asked me to come back down and see her. She repeated my bp again on both arms, it was the same as yesterday. She had phoned Leeds for my last lot of blood tests from Liver clinic and she had phone Cardio for my last blood results while I was in there. all of them came back clear, however there was no thyroid function in either place so she sent me for a blood test for this and did a whole work up while she was there. She then said she would ring me later and sent me home.
She called about 7 o'clock. Apparently she had been trying to get hold of my surgeon who did my throat surgery to ask why nothing had been done about my BP and to ask his advice on medication. Apparently the heart meds she wants me on can cause breathing problems so she wanted to get his advice. However, he hadnt returned her call. So she asked if I would be ok over the weekend. Again if I felt ill to go straight to A&E. I have an appointment with my surgeon on Monday anyway and she will have the blood results back by then and will see me again in the afternoon. She will probably start me on beta blockers if my thyroid comes back fine.
Oh what joy more meds. She did seem really concerned with how high it was though, which is a little worrying. Why didnt the hospital do anything if it was that bad? Instead of just saying well that must just be your normal. Its not normal and its damaging so yeah. She also wants to stop my psych meds incase these are causing my BP to be high. So im now taking 75mg less of venlafaxine. This will be fun, still depressed yet stopping the anti depressants and my psych dont want to know. hmm we shall see.
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