Greetings,
Sorry it has been so long, been a little short on things to write of late on this one. Well, nothing that I would rate as news worthy anyway. So, I suppose I had better update you all on my goings on of late. For the most part it will be off to another specialist for more answers and more drugs.
So I went off to the bone clinic a couple of weeks ago to talk to a doctor about the state of my bones and what could be done about it. For the most part it went the way that I expected, "Hi, you have osteoporosis and as such you need to increase your calcium and Vitamin D intake. So we are going to give you some more drugs to go on." So more drugs to counter-act the side-effects of other drugs that I am taking. Seems like circular pattern here and it is getting a little irritating and if it all was not so necessary I would have quit long ago... OK, so maybe not but you get the idea. Of course there was further news to be had and more poking to be done.
So doctor gives me the once over to make sure that I have not missed anything. He did. Had to inform him about some chunks of my medical history that they obviously missed, like the marfanoid habitus and the FM, to which he went "Oh." Once we managed to get past that little hump with regard to pain issues and other stuff. It was time to do something which I usually do not talk about as I am rather embarrassed about it. That would be the state of my teeth. In a nut-shell they are a mess due to various reasons which I will not go into. Anyway seems that I need to get them fixed in order for this whole thing to be improved so that will be off to see if that can get done. Not looking forward to that I can tell you. Oh, yeah, this will result in me having to be off some of my medications for a period of time to avoid side-effects (mumble, mumble, growl).
Anyway, it would seem that the finding of the sarcoid has resulted in me finding out that there are other bits of me which do not seem to be doing so well. Oh, look, more obstacles. Where did I put that 'dozer blade? Yup, I am still looking at the positive end to all of this. No other choice really, not in my nature to quit. OK, so there are certain things which I have had to put aside and am not able do, sure, but I can find ways around most of it, and will continue to do so. One of the most important things that I have found (and that I have to keep reminding myself) is that you need to be happy with what you can do. No point in bitching about the stuff that you can't, it wastes time and energy which could be spent in more useful pursuits.
Essentially with regard to things in life there are two types of things. The first is those things that you can do nothing about. These are usually irritating and we feel helpless with regard to a lot of them and this frustrates and annoys us no end. The important thing with regard to this is because there is nothing we can do about them, we should spend much less time worrying about them as well. What's the point? It is not going to get you any further. The second is those things that we can do something about and it is here that we should spend our time and energy. Hell, looked at in the correct way even some of the things which we think we can do nothing about may actually have something we can do about them. The most important thing about this second type of thing is that we need to do something about them and feel happy when we do, no matter how little that may be.
Be happy with your victories no matter how small they may be. Each one should be celebrated. Of course then it is important to move on to the next task. Always look forward, it is much more useful than looking back. Always consider what you can do, and do it. No point in worrying about stuff you can't.
Cheers,
...Henry.
Saturday, October 1, 2011
Friday, August 26, 2011
Really Short Update
Greetings,
This is going to be a really short one... don't be too shocked. I figured that I should give an update on how things are going just in a short version anyway.
In a nutshell, I have been back to the specialist again to see how the prednisone is going. Well, I can tell you that I have an appetite from hell at the moment a "see food diet" i.e. I see food and eat it resulting in me having put on about 5 kg in the last 6 weeks, not so scary for some, a bit for me considering that it has taken me *years* to get to my "average" weight for my height. All in all though the prednisone is doing its job and I am breathing better even if some of the irritating symptoms of the sarcoid are still present. Oh, yeah, and it looks like there is a little osteoporosis there as well, another annoyance to deal with. So it is on with the calcium supplement as well, and time to be a little careful for a while... oh, well... NEXT!
In the discussion there was a decision made to take me off the prednisone and get me on to methotrexate. I have no issue with this concept as being on the prednisone for an extended period can lead to all sorts of issues, so I am in the process of weaning off the prednisone and building up on the methotrexate.
That's about it. If anything significant needs to be reported I will be back on here. In the meantime. I will go along as I have been. Nothing to get excited about as yet, and I am not expecting anything. The conditions I will deal with, sure there will be some limitations, but hell if I won't fight them.
Cheers,
Henry.
This is going to be a really short one... don't be too shocked. I figured that I should give an update on how things are going just in a short version anyway.
In a nutshell, I have been back to the specialist again to see how the prednisone is going. Well, I can tell you that I have an appetite from hell at the moment a "see food diet" i.e. I see food and eat it resulting in me having put on about 5 kg in the last 6 weeks, not so scary for some, a bit for me considering that it has taken me *years* to get to my "average" weight for my height. All in all though the prednisone is doing its job and I am breathing better even if some of the irritating symptoms of the sarcoid are still present. Oh, yeah, and it looks like there is a little osteoporosis there as well, another annoyance to deal with. So it is on with the calcium supplement as well, and time to be a little careful for a while... oh, well... NEXT!
In the discussion there was a decision made to take me off the prednisone and get me on to methotrexate. I have no issue with this concept as being on the prednisone for an extended period can lead to all sorts of issues, so I am in the process of weaning off the prednisone and building up on the methotrexate.
That's about it. If anything significant needs to be reported I will be back on here. In the meantime. I will go along as I have been. Nothing to get excited about as yet, and I am not expecting anything. The conditions I will deal with, sure there will be some limitations, but hell if I won't fight them.
Cheers,
Henry.
Monday, June 27, 2011
Update and... Answers?
Greetings good readers,
So, it has been a while since I have commented on my FM or on any other medical type issues. In fact, I will admit that with regard to this particular blog I have been horribly slack and for that I will give a little apology. It has been one of those things where I have been wondering whether it was really appropriate to be putting in the blog anyway. Yes, sure it is my blog therefore anything that I like can go in it, but the reverse is the same. Anyway on to the topic at hand time for some news and some which may surprise some people. Oh, sorry, but this is going to be a long one...
Time for some news then. Seems that there have been a couple of questions rolling around the local branches of the SCA (Society for Creative Anachronism) about my health and "some chest issue" that I seem to be having. Well, in order to squish some of those rumours and get the story straight, I will present the following...
Some months ago I was getting dressed and noticed a lump down toward my stomach. I thought nothing of it at the time and decided to ignore it. A little while later I noticed it again and decided that I should really do something about it and see what it was. So, off to the doctor for an examination, and then off to get an ultrasound. The result was an over-enlarged spleen. What? What is that from? So more tests now we get to go off for a CT scan of the abdomen/chest area to see what is going on. The preliminary result at that point in time once it all came back was sarcoidosis.
Well, after a referral to the general specialist at the Princess Alexandra Hospital in Brisbane, followed by being passed along to another respiratory specialist in another department of the same hospital, it has been confirmed that it is sarcoidosis. In this particular case the result and diagnosis is a good thing as it could have been a lot worse, and sarcoidosis is something that can be dealt with. In my case I am just putting it on my list of irritations. It is something that I have been keeping to myself and those people who really need to know for sometime on the basis that I did not want people making a fuss. For the most part it is really easy to handle things myself, hence no need for anyone else to worry about it.
So, what does all this mean, well if you want some information about sarcoidosis, the easiest one that I have found to read about this particular issue is the wikipedia version (http://en.wikipedia.org/wiki/Sarcoidosis). So, in essence it is something which just turns up for no apparent reason and in most cases goes away without assistance. In some rare cases it can be life-threatening, but I really don't think that I am going to end up in that basket. In my particular case the most part of the condition has been found in my lungs and this is where I am being most affected. The specialist is organising for me to have various tests to ensure that it has not got anywhere more inconvenient, but we are dealing with what is in front of us. Me, I am not particularly worried, I am counting it as a long-ish term inconvenience.
So, for me the three major symptoms are, a reduction in my lung capacity leading to getting out of breath quicker and more often, an enlarged spleen which needs to be protected, and the most annoying of all an occasional "smoker's cough" which just irritates the hell out of me as I quit 7 August 2010. The hardest part for me is really the having to slow down a bit due to the reduced lung capacity and thus reduced energy levels to tell you the truth. I have some other symptoms such as random pains in the chest here and there which can be a bit painful, but they are less of an issue. With these symptoms on the table and presented to the doctor it was decided that medication in my case to control or at least deal with some of the symptoms to a degree was a good idea.
So, my GP (general practitioner) put me on symbicort as a start once the diagnosis was confirmed as sarcoidosis as a stop-gap until the specialist decided what she wanted to do about it. With the symptoms present it was decided that a course of prednisone to start with would be a good idea. Yay, more drugs to take, not. So these get taken once every morning with food. Food? In the morning? That means breakfast! Not being a breakfast type person this has taken some weeks to get used to I can tell you. Now of course we begin to look at the side-effects of the medication, and what an interesting list it is. Once again lets look at our friend the wikipedia for prednisone (http://en.wikipedia.org/wiki/Prednisone). What you will notice is an interesting list of side-effects, some of which I am going to notice and others which could be confused for the FM playing up. Just another list of possibilities is what I am putting it down as, nothing more.
So, I have this additional "thing" wrong with me, and what do you think I am going to do about it? Well, if you have read any of my previous blog posts about how I deal with my FM for the most part you will not be surprised about my response to this. The first part of my response is to do what the doctors are telling me to do about it from their point of view as they have my best interests in mind (Yes, I really do believe that). Second part of my response is to look at exactly what I can do about the situation and what I cannot do about it. The second bit is just for reference as focusing on what I cannot do is just going to annoy the hell out of me. Once I have figured out what I can do, do something about it. The third part of my response to this condition is to respond to it in much the same way that I deal with the FM, I will be doing what I can when I can, and attempting to grow the ability to slow down a little bit and not push myself too hard. I can tell you out of all of it, the last bit is the bit that is going to annoy me the most. So, now that is dealt with we can move on to something really interesting.
My good sister recently sent me an article which postulates that fibromyalgia (FM) may actually be related to brain injuries on some level and thus through this may actually be more to do with the brain that the other parts of the body. This is rather interesting for me especially with my history, but also because this might actually give an answer as to how I got FM in the first place which would be truly amazing. This is the bit where I have a situation where I might have an answer finally.
Anyway the document proposes that FM might be caused by trauma to the brain. Now this trauma is not necessarily large, but in some cases it is actually quite small. Essentially the brain chemistry releases chemicals etc to deal with the injury itself and thus results in the symptoms of FM as expressed in many sufferers. In some cases FM has developed in a patient after Traumatic Brain Injury (TBI) and after surgeries related to such TBI or other conditions where the brain has been operated on. This is something which is of real interest to me due to some past history of mine.
In my particular case I had a very active childhood which in some instances due to my activity and exuberance resulted in impacts to the head. In my case I have had several doses of concussion in my life due to various incidences and accidents and also other head injuries. Now with the information which has been detailed above in my case I might actually have an answer as to the reason for me actually having FM. What is potentially truly exciting about this particular situation is that this means that there might, and I am not getting my hopes up, be a chance that there may be an end to it. In my situation I have had various promises with regard to answers which have fallen flat so I am not getting my hopes up just yet.
I don't expect miracle cures for anything, they are something which would be nice if they happened but not something that I expect. For the most part I am happy to plod along with the way that I am going. I will do what I can when I can and that will please me. Sure there will be those times where frustration will get the better of me, but the hardest lesson that I have had to learn is that sometimes I actually do need to slow down a bit. Sure I can tell others to do it, but it is one of those cases where I have a hard time taking my own advice. Best thing I think for all is pick yourself up and keep going, sure it may take some time, but you will get there in the end as long as you have the guts and the drive to do so. Quitting is easier, but it is sure as hell less satisfying.
Cheers,
Henry.
So, it has been a while since I have commented on my FM or on any other medical type issues. In fact, I will admit that with regard to this particular blog I have been horribly slack and for that I will give a little apology. It has been one of those things where I have been wondering whether it was really appropriate to be putting in the blog anyway. Yes, sure it is my blog therefore anything that I like can go in it, but the reverse is the same. Anyway on to the topic at hand time for some news and some which may surprise some people. Oh, sorry, but this is going to be a long one...
Time for some news then. Seems that there have been a couple of questions rolling around the local branches of the SCA (Society for Creative Anachronism) about my health and "some chest issue" that I seem to be having. Well, in order to squish some of those rumours and get the story straight, I will present the following...
Some months ago I was getting dressed and noticed a lump down toward my stomach. I thought nothing of it at the time and decided to ignore it. A little while later I noticed it again and decided that I should really do something about it and see what it was. So, off to the doctor for an examination, and then off to get an ultrasound. The result was an over-enlarged spleen. What? What is that from? So more tests now we get to go off for a CT scan of the abdomen/chest area to see what is going on. The preliminary result at that point in time once it all came back was sarcoidosis.
Well, after a referral to the general specialist at the Princess Alexandra Hospital in Brisbane, followed by being passed along to another respiratory specialist in another department of the same hospital, it has been confirmed that it is sarcoidosis. In this particular case the result and diagnosis is a good thing as it could have been a lot worse, and sarcoidosis is something that can be dealt with. In my case I am just putting it on my list of irritations. It is something that I have been keeping to myself and those people who really need to know for sometime on the basis that I did not want people making a fuss. For the most part it is really easy to handle things myself, hence no need for anyone else to worry about it.
So, what does all this mean, well if you want some information about sarcoidosis, the easiest one that I have found to read about this particular issue is the wikipedia version (http://en.wikipedia.org/wiki/Sarcoidosis). So, in essence it is something which just turns up for no apparent reason and in most cases goes away without assistance. In some rare cases it can be life-threatening, but I really don't think that I am going to end up in that basket. In my particular case the most part of the condition has been found in my lungs and this is where I am being most affected. The specialist is organising for me to have various tests to ensure that it has not got anywhere more inconvenient, but we are dealing with what is in front of us. Me, I am not particularly worried, I am counting it as a long-ish term inconvenience.
So, for me the three major symptoms are, a reduction in my lung capacity leading to getting out of breath quicker and more often, an enlarged spleen which needs to be protected, and the most annoying of all an occasional "smoker's cough" which just irritates the hell out of me as I quit 7 August 2010. The hardest part for me is really the having to slow down a bit due to the reduced lung capacity and thus reduced energy levels to tell you the truth. I have some other symptoms such as random pains in the chest here and there which can be a bit painful, but they are less of an issue. With these symptoms on the table and presented to the doctor it was decided that medication in my case to control or at least deal with some of the symptoms to a degree was a good idea.
So, my GP (general practitioner) put me on symbicort as a start once the diagnosis was confirmed as sarcoidosis as a stop-gap until the specialist decided what she wanted to do about it. With the symptoms present it was decided that a course of prednisone to start with would be a good idea. Yay, more drugs to take, not. So these get taken once every morning with food. Food? In the morning? That means breakfast! Not being a breakfast type person this has taken some weeks to get used to I can tell you. Now of course we begin to look at the side-effects of the medication, and what an interesting list it is. Once again lets look at our friend the wikipedia for prednisone (http://en.wikipedia.org/wiki/Prednisone). What you will notice is an interesting list of side-effects, some of which I am going to notice and others which could be confused for the FM playing up. Just another list of possibilities is what I am putting it down as, nothing more.
So, I have this additional "thing" wrong with me, and what do you think I am going to do about it? Well, if you have read any of my previous blog posts about how I deal with my FM for the most part you will not be surprised about my response to this. The first part of my response is to do what the doctors are telling me to do about it from their point of view as they have my best interests in mind (Yes, I really do believe that). Second part of my response is to look at exactly what I can do about the situation and what I cannot do about it. The second bit is just for reference as focusing on what I cannot do is just going to annoy the hell out of me. Once I have figured out what I can do, do something about it. The third part of my response to this condition is to respond to it in much the same way that I deal with the FM, I will be doing what I can when I can, and attempting to grow the ability to slow down a little bit and not push myself too hard. I can tell you out of all of it, the last bit is the bit that is going to annoy me the most. So, now that is dealt with we can move on to something really interesting.
My good sister recently sent me an article which postulates that fibromyalgia (FM) may actually be related to brain injuries on some level and thus through this may actually be more to do with the brain that the other parts of the body. This is rather interesting for me especially with my history, but also because this might actually give an answer as to how I got FM in the first place which would be truly amazing. This is the bit where I have a situation where I might have an answer finally.
Anyway the document proposes that FM might be caused by trauma to the brain. Now this trauma is not necessarily large, but in some cases it is actually quite small. Essentially the brain chemistry releases chemicals etc to deal with the injury itself and thus results in the symptoms of FM as expressed in many sufferers. In some cases FM has developed in a patient after Traumatic Brain Injury (TBI) and after surgeries related to such TBI or other conditions where the brain has been operated on. This is something which is of real interest to me due to some past history of mine.
In my particular case I had a very active childhood which in some instances due to my activity and exuberance resulted in impacts to the head. In my case I have had several doses of concussion in my life due to various incidences and accidents and also other head injuries. Now with the information which has been detailed above in my case I might actually have an answer as to the reason for me actually having FM. What is potentially truly exciting about this particular situation is that this means that there might, and I am not getting my hopes up, be a chance that there may be an end to it. In my situation I have had various promises with regard to answers which have fallen flat so I am not getting my hopes up just yet.
I don't expect miracle cures for anything, they are something which would be nice if they happened but not something that I expect. For the most part I am happy to plod along with the way that I am going. I will do what I can when I can and that will please me. Sure there will be those times where frustration will get the better of me, but the hardest lesson that I have had to learn is that sometimes I actually do need to slow down a bit. Sure I can tell others to do it, but it is one of those cases where I have a hard time taking my own advice. Best thing I think for all is pick yourself up and keep going, sure it may take some time, but you will get there in the end as long as you have the guts and the drive to do so. Quitting is easier, but it is sure as hell less satisfying.
Cheers,
Henry.
Subscribe to:
Posts (Atom)
