Hello again! Well it seems to be getting busier as we start to get closer to Christmas. I really like the Christmas season however it also brings on a lot of extra stress. That stress usually means increased pain however I'm not going to let that stop me from enjoying the season. This is one of my favorite times of the year. The fact that the Christmas shopping is done for the most part is also great because now we don't have the added stress of what to get for anyone. My wife is great for being organized enough so that we get things done! If it was left to me I'd probably be shopping on Christmas Eve.
This is the best time of the year because we get to spend so much family time together. They really are the ones who keep me going through all this. I have such an amazing family, and am really blessed by the kids and wife that God has given me. As much as the kids drive me crazy, they are also the ones that who help me find the strength to keep going. When your kids of 3 and 6 ask if they can pray for you to take away your pain, then you know that it's a gift from God. They might make me crazy at times however I wouldn't trade them for the world.
Today is one of those days where they could very easily drive me up the wall. I'm having one of those days where it would take next to nothing to crawl out of my skin. My kids can trigger things to get worse when I'm having a bad day. What's really hard though is trying not to let the pain affect my relationship with them. Often I can be short with them when really it's the pain causing me to act that way. There isn't a day that I don't ask for grace from God in dealing with my kids. I want my kids to grow up having a childhood filled with fun, laughter, and love. Sometimes though it can be really difficult not letting the CRPS/RSD affect them as well. You can't tell me that it doesn't affect them because it does. There are lots of times where they can't act like kids do because of dad's condition. Instead at times they have to walk on eggshells because Dad is in pain, and it can be a real challenge to get around that.
Sometimes it can be really hard as I deal with this to watch all the people around me and how this disease affects their lives. However I really believe that God is working among everyone to help everyone with their specific needs. My attitude is that I will win this fight, just like David brought down Goliath. You take on each challenge that you face as it comes at you. Don't let obstacles stop you from getting past them, because there is always a way to get past. As a family this is what we do, we adapt to the circumstances and get it done! First and foremost though God is helping me walk through this one step at a time. He gives me the mental attitude that I need day in day out.
In January my wife and I will be heading away for some much needed time alone. We will be heading to Hawaii to relax and forget about all the pressures that we face. No kids! Quiet time alone! Time with the love of my life! It doesn't get any better than that! Again this is something that you need as a couple to recharge and spend time with each other. Along with that however its a chance to have some fun. We need to focus on things other than the pain. There is this tremendous mental game going on with CRPS/RSD, so I've decided with Gods help to stare adversity in the face!!
Tuesday, November 23, 2010
Tuesday, November 16, 2010
Diet And Your CRPS!!
So how is everybody doing today? I'm having one of those days where I'm trying to ignore the pain yet it isn't working. Every time I try to distract myself from the pain it flares up a bit more and makes things worse. It doesn't help that at one of my doctors appointments today, I received a nerve block for recurring pain that I've been getting in my abdomen stemming from another problem. It's suppose to help take the pain away! Not make it worse! At the moment I'm feeling quite a bit of discomfort and it's making it hard to keep my mind off the pain.
Things have been getting a little more difficult over the last couple of days, as I try to deal with the stress of two kids and a wife recovering from a hysterectomy. I'd be lying if I said it wasn't affecting my pain level!! All things considered however the pain level is ok. I'm still waiting for news on when they are going to do my spinal implant, however it could be this month or three months down the road. I've already been on the wait list for five months so I'm trying to be patient. I keep telling myself it will be worth it in the end if I can reduce my pain by 50%.
I'm trying to think of all the things I'd like to be able to do again if the spinal cord implant works. It would be great if I'm able to increase my exercise from what it is now, which is practically nothing. That alone would be something great. If I'm able to get more active then maybe I just won't get sick quite as much. At the moment yet again I'm fighting off bronchitis. It's the second time I've had it in under 6 months!! Having a lowered immune system because of the CRPS/RSD certainly makes it a challenge when flu and cold season hits. It's usually next to impossible not to catch something that the kids bring home from school or get from their friends. So if you're newly diagnosed with CRPS/RSD then this is something that your going to watch. Make sure that you're doing as much as you can to stay healthy.
One of the things I've done to try and keep myself healthy is change my diet and eating habbits a little bit. I generally eat a pretty healthy diet and because of that, have managed to lose 4lbs in the last little while just by changing my eating. It's really only been a matter of fine tuning my eating and it's helped a little weight come off. It was also making sure that I control my portions. Knowing that I can't be as active as I'd like, I have to account for that and so you do that odviously by controlling the quantity that I eat. I don't often go back for seconds anymore. As well as eating better I take certain supplements that my body needs. In my case there are a couple things that I need to take. I have osteopenia in my hand, or bone loss because I can't use my hand. So to fight that I take vitamin D, and calcium daily in order to try and slow down the bone loss. At least by eating a pretty healthy diet, I give my immune system a pretty descent chance at functioning at the best level that it can.
It's so important for us to keep our bodies as healthy as we can as we go through this. If you think about it it gives you the best chance at minimizing some of the symptoms that we suffer from. Just the amount of medication that I take is reason enough to try and stay as healthy as I can. Eating well gives me the chance to reduce some of the symptoms that the medications can cause. I'm not going to lie and say that it's easy to watch your eating. I'm not perfect and at times have trouble with staying on track, however I do feel better doing it. I find the days where my pain is really bad to be the hardest. You don't always want to eat because of the pain, yet if you don't then your body isn't going to be in the shape it needs to be to fight this.
There are certain things that we can do to fight everything that our bodies are going through as we deal with CRPS/RSD. Eating right and giving our bodies the nutrients that it needs is one of those things. It isn't just that I want to tell you to eat right, it's that I've noticed a difference in how I feel. Even from the standpoint of being able to say that eating well gives us the energy our bodies need to keep up the fight.
It's time that I try to get some sleep! As of late I've really been having a bad time trying to sleep at night. Sleep hasn't been easy at the best of times with my CRPS. However lately with my increase in pain I've been having an even harder time when it comes to sleep. I roll over into a position that puts pressure on my affected hand or foot, and you have to peel me off the roof!! The burning sensation of my limbs has also been worse at night for some strange reason. I just keep praying every day that I wake up one morning and the pain will be gone. Anyway until the next time I say goodnight!
Things have been getting a little more difficult over the last couple of days, as I try to deal with the stress of two kids and a wife recovering from a hysterectomy. I'd be lying if I said it wasn't affecting my pain level!! All things considered however the pain level is ok. I'm still waiting for news on when they are going to do my spinal implant, however it could be this month or three months down the road. I've already been on the wait list for five months so I'm trying to be patient. I keep telling myself it will be worth it in the end if I can reduce my pain by 50%.
I'm trying to think of all the things I'd like to be able to do again if the spinal cord implant works. It would be great if I'm able to increase my exercise from what it is now, which is practically nothing. That alone would be something great. If I'm able to get more active then maybe I just won't get sick quite as much. At the moment yet again I'm fighting off bronchitis. It's the second time I've had it in under 6 months!! Having a lowered immune system because of the CRPS/RSD certainly makes it a challenge when flu and cold season hits. It's usually next to impossible not to catch something that the kids bring home from school or get from their friends. So if you're newly diagnosed with CRPS/RSD then this is something that your going to watch. Make sure that you're doing as much as you can to stay healthy.
One of the things I've done to try and keep myself healthy is change my diet and eating habbits a little bit. I generally eat a pretty healthy diet and because of that, have managed to lose 4lbs in the last little while just by changing my eating. It's really only been a matter of fine tuning my eating and it's helped a little weight come off. It was also making sure that I control my portions. Knowing that I can't be as active as I'd like, I have to account for that and so you do that odviously by controlling the quantity that I eat. I don't often go back for seconds anymore. As well as eating better I take certain supplements that my body needs. In my case there are a couple things that I need to take. I have osteopenia in my hand, or bone loss because I can't use my hand. So to fight that I take vitamin D, and calcium daily in order to try and slow down the bone loss. At least by eating a pretty healthy diet, I give my immune system a pretty descent chance at functioning at the best level that it can.
It's so important for us to keep our bodies as healthy as we can as we go through this. If you think about it it gives you the best chance at minimizing some of the symptoms that we suffer from. Just the amount of medication that I take is reason enough to try and stay as healthy as I can. Eating well gives me the chance to reduce some of the symptoms that the medications can cause. I'm not going to lie and say that it's easy to watch your eating. I'm not perfect and at times have trouble with staying on track, however I do feel better doing it. I find the days where my pain is really bad to be the hardest. You don't always want to eat because of the pain, yet if you don't then your body isn't going to be in the shape it needs to be to fight this.
There are certain things that we can do to fight everything that our bodies are going through as we deal with CRPS/RSD. Eating right and giving our bodies the nutrients that it needs is one of those things. It isn't just that I want to tell you to eat right, it's that I've noticed a difference in how I feel. Even from the standpoint of being able to say that eating well gives us the energy our bodies need to keep up the fight.
It's time that I try to get some sleep! As of late I've really been having a bad time trying to sleep at night. Sleep hasn't been easy at the best of times with my CRPS. However lately with my increase in pain I've been having an even harder time when it comes to sleep. I roll over into a position that puts pressure on my affected hand or foot, and you have to peel me off the roof!! The burning sensation of my limbs has also been worse at night for some strange reason. I just keep praying every day that I wake up one morning and the pain will be gone. Anyway until the next time I say goodnight!
Thursday, November 11, 2010
Fighting CRPS/RSD
Well today is a great day! I feel as though a huge weight has been lifted off my shoulders. As I have been writing in previous posts, my wife has been dealing with her own health issue. Today I can tell you that everything has worked out well, and all she has to do now is recover from her surgery. It just allows a huge amount of stress within our family to fall off our shoulders. I'm excited by this because hopefully it's going to reduce my pain level along with it. So now I can concentrate on what I set out to do on this site. I have to admit that it hasn't been easy to write because my mind has been elsewhere. Through everything that has been going on our family and friends have been amazing and I thank them for everything that they have done.
So as I had mentioned in a previous post it's CRPS/RSD Awareness month. Are you doing your part to raise awareness? Later this month the 30th to be exact I'll be doing a radio show to try to raise more awareness, as well I'll hopefully be doing another friends radio show. I'm hearing about some great things that are happening to raise awareness. On one of the sites that I often go to http://www.ohmynerves.wordpress.com they are making a quilt that is drawing attention from the media. It's people doing things like this that help our cause.
I just feel that any chance that we get to talk to people, or bring light to our condition is an opportunity that you can't let go by. Bit by bit we can really make a difference. I know it seems impossible however I really believe that we can make a difference. Instead of getting mad at the doctor that doesn't know anything about your condition maybe you can work with him or her to educate them. I just heard about a doctor that has written a book on teens that are living with CRPS/RSD, so I'm tracking down the book and trying to get it into my therapists hands. It's doing little things like this that are going to raise awareness, and help the people that need the information get it. I can hardly wait for the day that I start hearing stories of people getting better!!
Through all of this God has changed me and has given me this intense desire to see peoples lives changed. I don't want to see people suffer anymore. Not only do I want to see others lives changed but I want to see my life changed, and God is guiding me through that change. Over the last little while I've been experiencing change. As I wake up each morning instead of wanting to give up and give in to the pain, I wake up and tell myself how can I beat this. As days go by God is slowly revealing those answers.
As you know I am working on moving this site. I am wanting to incorporate some good books on CRPS/RSD that people can get good information from. If you have any books or authors please leave me a comment. I would really appreciate it if I could receive some help with that. So until then I'll talk to you soon!!
So as I had mentioned in a previous post it's CRPS/RSD Awareness month. Are you doing your part to raise awareness? Later this month the 30th to be exact I'll be doing a radio show to try to raise more awareness, as well I'll hopefully be doing another friends radio show. I'm hearing about some great things that are happening to raise awareness. On one of the sites that I often go to http://www.ohmynerves.wordpress.com they are making a quilt that is drawing attention from the media. It's people doing things like this that help our cause.
I just feel that any chance that we get to talk to people, or bring light to our condition is an opportunity that you can't let go by. Bit by bit we can really make a difference. I know it seems impossible however I really believe that we can make a difference. Instead of getting mad at the doctor that doesn't know anything about your condition maybe you can work with him or her to educate them. I just heard about a doctor that has written a book on teens that are living with CRPS/RSD, so I'm tracking down the book and trying to get it into my therapists hands. It's doing little things like this that are going to raise awareness, and help the people that need the information get it. I can hardly wait for the day that I start hearing stories of people getting better!!
Through all of this God has changed me and has given me this intense desire to see peoples lives changed. I don't want to see people suffer anymore. Not only do I want to see others lives changed but I want to see my life changed, and God is guiding me through that change. Over the last little while I've been experiencing change. As I wake up each morning instead of wanting to give up and give in to the pain, I wake up and tell myself how can I beat this. As days go by God is slowly revealing those answers.
As you know I am working on moving this site. I am wanting to incorporate some good books on CRPS/RSD that people can get good information from. If you have any books or authors please leave me a comment. I would really appreciate it if I could receive some help with that. So until then I'll talk to you soon!!
Thursday, November 4, 2010
I Hate Spam!!
Hi Everyone! I wanted to post about something different today. I wanted to post about the people that think it's funny to place spam within peoples sites! I can't stand people that think that this is funny or fun to do to people! I've recently found a couple of comments that people tried to place in my blog that were in fact spam. I've now gotten rid of those comments and I believe everything is ok. If you read my blog though and you recieve any type of spam could you please let me know so that I can deal with it. I need to know what the spam is saying so that I can try to track the source. Like I say however I believe I've delt with it.
It's beyond me how people can see this as being fun to do to people. I'm trying to help others and share my story with people and other people have to step in and cause grief!! Sorry to anyone that may have been spammed. I'm working on getting my new site up and running and it has two spam filters that will hopefully catch anyone trying to do this to my site. If your reading this and your one of the people that put spam in my comments I'll say this to you. You are not welcome on my site and I will be reporting you to the proper authorities if I catch you playing with my site.
Now that I've said what I have I'll get to what I was going to post about today. The new site is coming along and I'm hoping that I'll be blogging on it very soon. I'm really hoping that any of you that read my blog on a regular basis will follow me over to that site. I've got the google friend connect up so I need you to go to that site and do the same thing as on this site. I need you to go to http://painfullyoptomistic.com/ and click on join this site and then you'll be following on my new site as well. This is exciting because I really feel like I'm going to be able to make this site my own and add a lot to it that I wasn't able to put on this one.
One of the things that I'm hoping to incorporate into the site is a list of resources that you will be able to draw from. I've listed links to sites however I want to list different reading materials and various retail items that are available to you, in order to assist people in various ways. I do have to cut today's post a little short however I'll see you again real soon.
It's beyond me how people can see this as being fun to do to people. I'm trying to help others and share my story with people and other people have to step in and cause grief!! Sorry to anyone that may have been spammed. I'm working on getting my new site up and running and it has two spam filters that will hopefully catch anyone trying to do this to my site. If your reading this and your one of the people that put spam in my comments I'll say this to you. You are not welcome on my site and I will be reporting you to the proper authorities if I catch you playing with my site.
Now that I've said what I have I'll get to what I was going to post about today. The new site is coming along and I'm hoping that I'll be blogging on it very soon. I'm really hoping that any of you that read my blog on a regular basis will follow me over to that site. I've got the google friend connect up so I need you to go to that site and do the same thing as on this site. I need you to go to http://painfullyoptomistic.com/ and click on join this site and then you'll be following on my new site as well. This is exciting because I really feel like I'm going to be able to make this site my own and add a lot to it that I wasn't able to put on this one.
One of the things that I'm hoping to incorporate into the site is a list of resources that you will be able to draw from. I've listed links to sites however I want to list different reading materials and various retail items that are available to you, in order to assist people in various ways. I do have to cut today's post a little short however I'll see you again real soon.
Monday, November 1, 2010
CRPS/RSD Awareness Month!!
Hi Everyone! Just wanted to let everyone know if you didn't already know that November is CRPS/RSD Awareness month!! Take a minute out of your day to tell someone about it! If you are someone who suffers from CRPS/RSD then make it a goal of yours this month to raise as much awareness as you can. We want to see change and a cure, so the only way to do that is to step up and become a voice for CRPS/RSD. Let's make people see what this is really all about!!
Sunday, October 31, 2010
Taking The Next Step With CRPS!
Well it's Halloween and as always it's that time of the year that my kids get to be on a sugar rush for the next several weeks!! I haven't been having the best of days today, as my pain has taken over my body for the day. For most of the day today I've been fighting with pain levels and generally just trying to block out the pain that my body shouldn't be feeling. It's at times like today that I sit at home waiting for the phone to ring, telling me that I have a surgery date. Within the next couple of months that should happen. I've been told that it could even be as soon as this month that I get the call. I almost hope however that the call will be next month. Not because I don't want the surgery but because my wife is scheduled for her surgery next week. I couldn't imagine both of us going for surgery at the same time.
In case you didn't know in previous posts I had mentioned that I had decided to go ahead with a spinal implant, to try to reduce to pain levels. It took me a while to make the decision however now that it's been made I know that it's the right one. It took a lot of research as well as praying, to know that this was the right thing to do. It can be so easy when dealing with something like this to get desperate and make choices that aren't right at times like these. Who can blame us however because all you want to be doing is living a life as pain free as possible. Every day I see people rushing into making choices, and in a lot of cases you can tell that it's just out of desperation.
Here in Canada there aren't lot of options for treatment. However the one treatment that is available to people who suffer from CRPS is the spinal implant. You can go ahead and get nerve blocks however for me they didn't seem to have much of an effect on reducing the pain. There was an initial reduction in pain for about the first day then the pain seemed to return. I did see an increase in ankle movement however that now seems to have flat lined and the pain seems to have been getting worse over the last couple of months. After the nerve blocks failed I started looking towards the implant. I was put in touch with Dr. K. Kumar who is a very well respected Neurosurgeon here in Canada. With most of the treatments being in the U.S. it seemed only logical to make seeing him the next logical choice.
After seeing Dr. K.Kumar my brain was swimming with information, and I had all kinds of trouble with trying to process everything he had told me. Part of me was saying that I needed to go for the implant and the other half of me said no way! My brain was saying do you really want to put yourself through this only to have another thing fail. At the same time I was trying to weigh the risks, and were they really worth it to me. At the same time on the positive side it could reduce my pain by 50% if it works. It could also help me manage the pain better. In the back of my head I was also asking myself if this was the right treatment, because there were just as many cons to go with the pros. So I went back to see Dr. K. Kumar again to ask more questions. I walked away feeling good about what he told me, and I told myself I'd made my decision.
What I had to take into consideration was the fact that 25yrs experience in Neurosurgery says something. It says experience! Also able to give me good solid facts both good and bad about the results people see, as well as the risks to those who undergo the surgery. I had to trust the information that I was being given, and make a decision. I started to pray about it and just trusted that God would help me make the right choice. So what words of wisdom might I have for anyone? When your looking at the different treatments that are available don't make a desperate decision just because your pain is bad and you want it to stop. Think about how it may affect you in the long run both good and bad. Make an educated decision and don't let others make the decision for you. Most important however ask God to help you make the decisions you need to make.
In case you didn't know in previous posts I had mentioned that I had decided to go ahead with a spinal implant, to try to reduce to pain levels. It took me a while to make the decision however now that it's been made I know that it's the right one. It took a lot of research as well as praying, to know that this was the right thing to do. It can be so easy when dealing with something like this to get desperate and make choices that aren't right at times like these. Who can blame us however because all you want to be doing is living a life as pain free as possible. Every day I see people rushing into making choices, and in a lot of cases you can tell that it's just out of desperation.
Here in Canada there aren't lot of options for treatment. However the one treatment that is available to people who suffer from CRPS is the spinal implant. You can go ahead and get nerve blocks however for me they didn't seem to have much of an effect on reducing the pain. There was an initial reduction in pain for about the first day then the pain seemed to return. I did see an increase in ankle movement however that now seems to have flat lined and the pain seems to have been getting worse over the last couple of months. After the nerve blocks failed I started looking towards the implant. I was put in touch with Dr. K. Kumar who is a very well respected Neurosurgeon here in Canada. With most of the treatments being in the U.S. it seemed only logical to make seeing him the next logical choice.
After seeing Dr. K.Kumar my brain was swimming with information, and I had all kinds of trouble with trying to process everything he had told me. Part of me was saying that I needed to go for the implant and the other half of me said no way! My brain was saying do you really want to put yourself through this only to have another thing fail. At the same time I was trying to weigh the risks, and were they really worth it to me. At the same time on the positive side it could reduce my pain by 50% if it works. It could also help me manage the pain better. In the back of my head I was also asking myself if this was the right treatment, because there were just as many cons to go with the pros. So I went back to see Dr. K. Kumar again to ask more questions. I walked away feeling good about what he told me, and I told myself I'd made my decision.
What I had to take into consideration was the fact that 25yrs experience in Neurosurgery says something. It says experience! Also able to give me good solid facts both good and bad about the results people see, as well as the risks to those who undergo the surgery. I had to trust the information that I was being given, and make a decision. I started to pray about it and just trusted that God would help me make the right choice. So what words of wisdom might I have for anyone? When your looking at the different treatments that are available don't make a desperate decision just because your pain is bad and you want it to stop. Think about how it may affect you in the long run both good and bad. Make an educated decision and don't let others make the decision for you. Most important however ask God to help you make the decisions you need to make.
Monday, October 25, 2010
Understanding CRPS!
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.
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.
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