If it's not bad enough that I deal with my pain on a daily basis, today I'm dealing with a case of the stomach flu or something like that. The rest of the family has colds so this isn't a very healthy house right now. It's gotten to the point now that I just have to laugh! One thing after another! Well I'm moving along with getting my new site up and running, and I look forward to any of you that read my blog to move along with me when I do. This is really all a part of me making a site that will let me do more. It will allow me to incorporate more features into my site, so that I can get more info out to people that are living with CRPS. As well as info to those who don't know about it. I hope to add more links to sites that are both personal and medical sites, that give info about different aspects of CRPS. If anyone has some great sites that you would like to see incorporated send me the links so I can take a look.
As lots of you have been reading in different posts, I've been dealing with all kinds of stress in recent weeks. This of course has made the pain even worse. I stay optimistic that this will change and that things will get better. This is all part of this nasty thing that we call CRPS/RSD. It's just one of those times where there's a storm going on an you have to do your best to stay afloat!! I've got my life vest on and I'm keeping my head above water. I try to deal with all the different aspects of the storm as best I can. Knowing that I'm going to come out on the winning side of things.
When people think about CRPS they often think that all we deal with is pain. What people don't understand are all the other ways in which we are affected. When you take the time to listen to someone who knows about CRPS then you start understanding that it affects a person in so many more different ways than just physical pain. This is the nervous system that we are dealing with! What I'm trying to say is that you look at the nervous system and all it controls. If CRPS/RSD affects this system then there are a whole host of issues that start. Have you wondered why we get sick more frequently than others? It's because your immune system has been affected. There are lots of other ways in which our nervous system is affected, to many to get into. I would encourage you to talk to a medical professional about that though.
My point is that you can't just look at the pain side of things. You need to look at the entire package and if you do, then you start to understand a lot of what's going on within our bodies. If you do this then you can start to more efficiently deal with some of the flares that you suffer from. Armed with this info you can come up with a better plan for how to manage your CRPS. Does it mean that all the symptoms go away? No it doesn't however there are a lot of times that you can make things better.
I'm just trying to point out that CRPS affects us in so many more ways than what people think. So when we are having a bad day it isn't just pain that might be affecting us. Often a bad day for me is my brain being very clouded so it's hard for me to think, or even focus on doing simple tasks that might seem easy to others. People often say that it's the medication that makes you that way. OK! To a point the medication plays a factor! If you do the research then you'll see that CRPS itself is responsible for some of those things as well. I really want people to see that there is more behind the pain!
So you can see how this affects those people who go into their doctor and are looking for a diagnosis. If a doctor doesn't know anything about CRPS/RSD then often the patient is told that the pain will go away, or simply that they don't know the root of our pain is coming from. If the doctors where armed with some of this information then it would aid them in making a diagnosis. Pain might be the one symptom that we suffer from the most, however it isn't the root of what's causing everything! This is what I myself am so interested in. Why is my brain acting the way that it is? What is going on behind the scenes that is causing everything to be so messed up? If only people knew the half of what I have not only experienced but have learnt since being diagnosed!
So I say this to those of you who don't know what CRPS/RSD is. Challenge yourself to learn more about this disease. You might begin to understand what it's all about, and why from one day to the next things can be so different. It's about bringing this disease forward and seeing it for what it really is!! It's about making more funding available so that more research can be done to find a cure.