The Latest Report...
Another day and well, I guess I just continue to go through the symptoms and treatment. Is it working? I hope so. My body seems remarkably tolerant to the strong drugs that I am taking.
Am I tired? I sleep or rest whenever I wish to so I can relax before I becoming tired or do so when I feel the need to. If I am unable to sleep through the night, I know I am able to at any time that I decide.
I still prop myself up in bed. It has enabled me to drain water that gathers in my legs. The worst area being the feet and ankles. They can really increase in size. I had to go out yesterday...I didn't want to but was as quick as I possibly could be and what a job to try and get a pair of shoes I could put my feet in.
Tight doesn't come into it. I thought that I may have to give up. Perhaps I need to find some shoes that lace up, I tend to use slip ons. Or a pair of cheap trainers, they'll not match anything I wear but may allow me some comfort. My feet really do swell especially in the afternoon/early evenings. And movement feels tight and uncomfortable if you have to try and bend your ankles/legs when walking or going up and downstairs. Then it really is worth a lay down to drain excess liquid away. I'm trying to manage on one water tablet as prescribed but maybe concede to taking that extra one to help matters. Of course the feet may have changed due to the steroids as well.
This is a bit gross.
I know that I have a hernia but I have come to the conclusion that where the water collects in the groin is creating pressure and pushing certain parts into a different position and as it is "weed" off hopefully my insides move back into the correct position again, so more reasons to lose the liquid. If that happens, it could mean I can manage that aspect.
It also would do no harm to try(and this is difficult when steroids add to your weight)especially around the stomach area to try and stop the stomach becoming over stretched again as the less you stretch it, the stronger it is at keeping everything in the correct place.
The treatment if it works will take ages to do it's job and even if it does and I am fortunate to come off it again, I will need regular check ups and could need to return to it at very short notice. And I have to be in the position that I can do as I wish any day as every day is different and I can feel different across any 24 hour period.
Before I returned to this treatment I found times I felt tired and you have to rest and getting around takes so much effort, you have to lay down and rest to get some energy back.
Mentally, I remain upbeat and positive.
I heard the other day on the BBC World Service a health story that explains how the Immune system can in trying to repair a problem actually attacks parts of the body and does harm unintentionally whilst thinking it's doing the correct thing. It now appears that certain proteins are created and if the scientist can interfere with that aspect, just maybe they could come up with newer, safer drugs to halt or decrease such problems. As these proteins latch onto healthy cells and kill them. So at least some research is going on to find a cure.
The Immune system can in theory decide to attack various parts of the body, in my case it's the kidneys but it could equally be the heart, liver or whatever else.
I don't know if it will make a difference but I have gone back to eating porridge today as an alternative to some of my breakfast fare as it's said to reduce cholesterol and as my levels have shot up suddenly, I thought just maybe I can reduce it naturally. We'll see.
Unless my diet is restricted I am continuing to try and eat all the foods I hope will keep me healthy, lots of fruit and veg and as I have to eat some protein, I keep to lean meat in Small portions like chicken or fish.
I have discovered that I can drink a bit more liquid if I do so through the night rather than during the day and early evening.
Am I tired? I sleep or rest whenever I wish to so I can relax before I becoming tired or do so when I feel the need to. If I am unable to sleep through the night, I know I am able to at any time that I decide.
I still prop myself up in bed. It has enabled me to drain water that gathers in my legs. The worst area being the feet and ankles. They can really increase in size. I had to go out yesterday...I didn't want to but was as quick as I possibly could be and what a job to try and get a pair of shoes I could put my feet in.
Tight doesn't come into it. I thought that I may have to give up. Perhaps I need to find some shoes that lace up, I tend to use slip ons. Or a pair of cheap trainers, they'll not match anything I wear but may allow me some comfort. My feet really do swell especially in the afternoon/early evenings. And movement feels tight and uncomfortable if you have to try and bend your ankles/legs when walking or going up and downstairs. Then it really is worth a lay down to drain excess liquid away. I'm trying to manage on one water tablet as prescribed but maybe concede to taking that extra one to help matters. Of course the feet may have changed due to the steroids as well.
This is a bit gross.
I know that I have a hernia but I have come to the conclusion that where the water collects in the groin is creating pressure and pushing certain parts into a different position and as it is "weed" off hopefully my insides move back into the correct position again, so more reasons to lose the liquid. If that happens, it could mean I can manage that aspect.
It also would do no harm to try(and this is difficult when steroids add to your weight)especially around the stomach area to try and stop the stomach becoming over stretched again as the less you stretch it, the stronger it is at keeping everything in the correct place.
The treatment if it works will take ages to do it's job and even if it does and I am fortunate to come off it again, I will need regular check ups and could need to return to it at very short notice. And I have to be in the position that I can do as I wish any day as every day is different and I can feel different across any 24 hour period.
Before I returned to this treatment I found times I felt tired and you have to rest and getting around takes so much effort, you have to lay down and rest to get some energy back.
Mentally, I remain upbeat and positive.
I heard the other day on the BBC World Service a health story that explains how the Immune system can in trying to repair a problem actually attacks parts of the body and does harm unintentionally whilst thinking it's doing the correct thing. It now appears that certain proteins are created and if the scientist can interfere with that aspect, just maybe they could come up with newer, safer drugs to halt or decrease such problems. As these proteins latch onto healthy cells and kill them. So at least some research is going on to find a cure.
The Immune system can in theory decide to attack various parts of the body, in my case it's the kidneys but it could equally be the heart, liver or whatever else.
I don't know if it will make a difference but I have gone back to eating porridge today as an alternative to some of my breakfast fare as it's said to reduce cholesterol and as my levels have shot up suddenly, I thought just maybe I can reduce it naturally. We'll see.
Unless my diet is restricted I am continuing to try and eat all the foods I hope will keep me healthy, lots of fruit and veg and as I have to eat some protein, I keep to lean meat in Small portions like chicken or fish.
I have discovered that I can drink a bit more liquid if I do so through the night rather than during the day and early evening.
posted by The Great Gildersleeve | 10:52 am
4 Comments:
Gildy I'm really glad that you are feeling upbeat and positive, it does show in your writing, because at times you are going through such pain and difficulty.
You are right about the immune system and the way it can shut down parts of the body, especially when the body goes into shock.
Keep holding onto the positive energy and goodwill messages from all your friends on the interweb, we're rooting for you.
Thanks Paul,
I'm reasonably ok if left alone and not stressed by red tape(one department accepts what I say)after filling in long and detailed forms whilst you have another department writing and asking or requesting that you come in for a chat.
And of course there are all the new ideas beings being muted in the media from the major parties.
I sometimes have been told my problem is that I do not accept I am ill and play it down as though it's nothing, I guess that's because I know there are many others with a variety of diseases and conditions that are equally as bad or worse to varying degrees.
And that goes for the treatment which can offer hope and also possible problems...when dealing with chronic conditions. I found the following article written by a reporter on the New York Times. Where once again, the immune system is causing problems again...
http://www.nytimes.com/2008/02/26/health/views/26case.html?_r=1&ref=health&oref=slogin
Gildy, I'm really pleased you're feeling positive, I'm sure the treatment is working.
I'm thinking about you a lot.
Take care. (Hugs)
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