Tuesday, January 31, 2012
Monday, January 30, 2012
Stressed Times- Fears
How much time is need to morn the loss of control over a limb ? or adjust to the fact that this disease is all about pain management. I'll be honest I'm not in a huge amount of pain but my the future of my disease is uncertain.. will it progress fast or slow .. is the fact that my hips are affected a sign its progressing fast ? How long before I loose my independance ? How long before the pain meds stop working ? Will I be a horrible patient or will I adjust.
Living with my nan really brings this all home she needs help about the house I don't mind doing it and she is more than thankful but it I keep wondering how long til I need help like this.
I KNOW I KNow ... I am not that bad yet but I can't help thinking about it. Between the frustrations of looking after gran , the frustrations of this disease , the lack of study being done and the fact I currently can't practise piano it is getting to me just a tad.
I worry I'm gonna become 'Psoriatic Arthritis and me', I'm not sure the title of my blog is that good I am much more that just PA but it is currently mastering me and I don't want to be known as Katie who has arthritis .. which could happen if I continually keep talking about it !! argh argh argh. Is it the uncertainty of the disease which is annoying me ? Either way I want to keep it a small part of me if possible. Whats the issue about being know for having arthritis ??.. I'm obviously not that comfortable with it yet and worried I won't be able to control it.
I've also been going on unnecessary guilt trips. There are sooo many inspirational blogs out there about individuals who are coping with arthritis and a helllova lot more besides .. I was comparing my disease to theirs .. mine is currently nothing in comparission. But it is mine and I'll deal with it in my own time and I shouldn't worry about how others deal with their illness that is their business.
:D one day at a time
YAWN
Living with my nan really brings this all home she needs help about the house I don't mind doing it and she is more than thankful but it I keep wondering how long til I need help like this.
I KNOW I KNow ... I am not that bad yet but I can't help thinking about it. Between the frustrations of looking after gran , the frustrations of this disease , the lack of study being done and the fact I currently can't practise piano it is getting to me just a tad.
I worry I'm gonna become 'Psoriatic Arthritis and me', I'm not sure the title of my blog is that good I am much more that just PA but it is currently mastering me and I don't want to be known as Katie who has arthritis .. which could happen if I continually keep talking about it !! argh argh argh. Is it the uncertainty of the disease which is annoying me ? Either way I want to keep it a small part of me if possible. Whats the issue about being know for having arthritis ??.. I'm obviously not that comfortable with it yet and worried I won't be able to control it.
I've also been going on unnecessary guilt trips. There are sooo many inspirational blogs out there about individuals who are coping with arthritis and a helllova lot more besides .. I was comparing my disease to theirs .. mine is currently nothing in comparission. But it is mine and I'll deal with it in my own time and I shouldn't worry about how others deal with their illness that is their business.
:D one day at a time
YAWN
Friday, January 27, 2012
Wednesday, January 25, 2012
Knackered
I've been busy very very busy.
Since my last post I have moved in with my grandmother and I now manage her care. It is hard work she is very forgetful but very sweet about it. A new aupair has started recently so she should help taking some of the pressure off. She has 3 leg ulcers which have improved since I moved in *yes. Her daughter/ My Aunt will be visiting in April from Aussieland I'd like her ulcers to be healed by then.
Work is also mad busy the boss man is under a lot of pressure and is passing stuff he can't do on to me and I'm already up to my neck in work.
College,Piano and Knitting have been put on the back burner ahhh soo much to do. I'm looking forward to a free day so I can just sleep. I wasn't able to sit my piano exam as the steroids weren't working very well and I had lost a lot practise time.
I saw the rhuematologist this week my methotrexate dose has been inceased to 17.5mg and I've to take more folic acid. Also I'll be on another course of steroids :). The right hand has been bad recently I wear a support on my wrist when Its very bad. The arthritis has spread to my hips( know I really feel like an old woman). I've noticed eating bread causes flares argh I'm already milk free I'll have to adjust. So it could either be the gluten, wheat, yeast or starch irritating me. Fun fun fun my diet does need to be tidied up I'll have to do it soon.
Some of the questions I never answered from the a previous post:
1. Can I come off Methotrexate how long will it take to get out of my system- No I am now on it for life well as long as it keeps working for me
2. Am I allowed to drink at all on Methotrexate?? yes but in moderation
3. What are the alternatives ?? there are anti inflammitary/ low starch diets and a whole host of supplements I could take but they don't work as well as the disease modifying drugs basically the results are not reliable and they only suit some people.
4. Will physiotherapy help ?? yes it should I will make an appointment soon.
5. With other meds what are the common side effects I should look out for ?? as my sister advised I shouldn't be looking out for side effects or I am more likely to imagine them happening to me.
6. Does she know where I could get wrist supports and I dunno a neoprene seath to keep my finger warm. - Ebay is a great resource for this stuff.
7. Is there any chance i can go on steroids long term .. ( I'd love that but the side effects are a right bollock !!) yes I might end up on steroids long term but I am very young so this option is not ideal no matter how much I love steroids.
Right back to work ....
Katie
Since my last post I have moved in with my grandmother and I now manage her care. It is hard work she is very forgetful but very sweet about it. A new aupair has started recently so she should help taking some of the pressure off. She has 3 leg ulcers which have improved since I moved in *yes. Her daughter/ My Aunt will be visiting in April from Aussieland I'd like her ulcers to be healed by then.
Work is also mad busy the boss man is under a lot of pressure and is passing stuff he can't do on to me and I'm already up to my neck in work.
College,Piano and Knitting have been put on the back burner ahhh soo much to do. I'm looking forward to a free day so I can just sleep. I wasn't able to sit my piano exam as the steroids weren't working very well and I had lost a lot practise time.
I saw the rhuematologist this week my methotrexate dose has been inceased to 17.5mg and I've to take more folic acid. Also I'll be on another course of steroids :). The right hand has been bad recently I wear a support on my wrist when Its very bad. The arthritis has spread to my hips( know I really feel like an old woman). I've noticed eating bread causes flares argh I'm already milk free I'll have to adjust. So it could either be the gluten, wheat, yeast or starch irritating me. Fun fun fun my diet does need to be tidied up I'll have to do it soon.
Some of the questions I never answered from the a previous post:
1. Can I come off Methotrexate how long will it take to get out of my system- No I am now on it for life well as long as it keeps working for me
2. Am I allowed to drink at all on Methotrexate?? yes but in moderation
3. What are the alternatives ?? there are anti inflammitary/ low starch diets and a whole host of supplements I could take but they don't work as well as the disease modifying drugs basically the results are not reliable and they only suit some people.
4. Will physiotherapy help ?? yes it should I will make an appointment soon.
5. With other meds what are the common side effects I should look out for ?? as my sister advised I shouldn't be looking out for side effects or I am more likely to imagine them happening to me.
6. Does she know where I could get wrist supports and I dunno a neoprene seath to keep my finger warm. - Ebay is a great resource for this stuff.
7. Is there any chance i can go on steroids long term .. ( I'd love that but the side effects are a right bollock !!) yes I might end up on steroids long term but I am very young so this option is not ideal no matter how much I love steroids.
Right back to work ....
Katie
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