Well I hope that everyone had a great Easter. We had a great time visiting with family and just relaxing. My pain wasn’t great however I didn’t let it stop me from having a really good time. My pain level in the last couple of days has become really bad. Yesterday my pain took a turn for the worse and I feel like my body has aged by fifty years. However life goes on right!! Keep fighting and keep positive!!
When I was trying to think about what I wanted to post about today I thought about something that my wife had mentioned the other night. She had mentioned that it was great to have me there at dinner knowing how hard it is for me with all the noise. If you suffer from CRPS then you know what I’m talking about when I say that it’s really hard to be around noisy situations or ones that create stress. A family gathering is right up there, with screaming kids and lots of people. It is never easy for me to go to a family gathering but they are important to me.
Sometimes pain can isolate us from others. It’s important not to let yourself become isolated to the point that you become depressed. I’m not saying that you don’t need time alone, but I am saying that you need to be social because its healthy for you. Today is one of those days, if I don’t spend some time on my own in a quite surroundings then things tend to get worse. The pain today is at a point where there seems to be no controlling it, and I just have to ride out the storm. Being in a quite surrounding is ok at a time like this. Your going to have days where you can’t seem to control the pain where you just need to be alone. Or in my case that’s where I really start asking God for help.
There are lots and lots of days that I find it challenging to get out and not let the pain consume me, because that’s what pain does. If you let it then pain will eat you alive. What do I mean by this? Its simple! What I mean is that you can either sit back and let the pain take over your life or you can get out and do things. I’m not saying that on a day like today I don’t need to take it easy. What I do mean however is that I have modified my life in ways that I can get out and be active with my disability. It might be something as simple as getting out and having coffee with a friend. I go out every week with a couple of friends for coffee. I really look forward to this and it gets me out and gets my mind off the pain.
It would be really easy for me to withdraw and become isolated if I wanted to as I go through this. However there are two choices that I can make when dealing with this pain. I can either sit at home and be in pain or I can make the best of a bad situation and go out with family and friends. I’m saying that regardless of your situation you can still get out and be active. It might mean that instead of going out for the hours with your friends that you only get together for an hour, but the important part is that your getting out and getting your mind off the pain.
Lots of us that suffer from CRPS think about our pain too much, and let it build and build until we can’t take it anymore. Before you know it you’ve become isolated from others and your headed in a downward spiral. What I’m saying is don’t let yourself get to that place. If your reading this and suffer from chronic pain then take a look at how it’s affecting your life. Are you becoming isolated from others? Are you spending a great deal of time on your own? Then ask yourself if everything is ok!!
Happy Easter Everyone!! Well I figure while everyone else is out I would write my Easter post. I’m enjoying a long weekend out at the lake. This is a place where I can really relax because we aren’t running like chickens with our heads cut off. I find that its the one place where we can go, and I get the rest that I need. As I write this I stare out onto our lake and see the increadable landscape around us. There is something so peaceful about this. Its almost as if life around me stands almost still and for one moment I can almost forget about everything that’s going on.
Our cottage is the one place that I can escape to be around nothing but family. I don’t have to worry about all the doctors, the physio appointments, and all the other things that are constant reminders of what my life has now become. This is the place I like to say that I can come to and distress a bit. This weekend we will set up the kids Easter Egg hunt and just have great times with the family. As we got about half way out to the cottage I remembered that I forgot my earplugs that I use for family gatherings. My family does get loud however I use them because of the eight screaming kids that we have in the house at Easter supper.
So how many of you have kids that have figured out that the Easter bunny is really mom and dad? Yesterday my wife was driving my oldest daughter who’s six to school when she says to my wife ” the Easter bunny is really you and dad isn’t it mom “. Like that we were busted and there was no turning back. We keep asking ourselves how she made the connection. However there was my wife explaining to her that it was all a game. She knows now and it’s now a matter of her not telling her little sister. We let the kids know the true meaning of Easter as well because it’s important to us to let them know.
Oh well the egg hunt won’t be quite as much fun but just being together with our family will be enough for me. It also means that when we get together with the entire family that there will be lots of eating!!! By the end of the weekend I won’t want to see another piece of food. These are the times that I’m ever so thankful that I have family around. It makes dealing with all of this so much easier. If I didn’t have this incredible family around me, I wouldn’t know how to deal with everything.
I’m really hoping that if you are spending some time away with your family this weekend, that you really enjoy yourself and forget about all that your dealing with for just a moment. If we are consumed by our pain all the time then our nervous system never gets the chance to relax. If we take the time to put ourselves into a stress free environment then we give it that chance to relax.
I know that this weekend is going to be filled with fun, laughter, and happiness which are better than any medicine. So enjoy your Easter and I’ll be writing my next post after the weekend.
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I had all kinds of things that I wanted to post about today, however I keep going back to something that I’ve been thinking about a lot lately. I keep thinking about all the great things that I’m going to do in the future. I keep thinking about the plans that God has for my life and that they are so much bigger than I could ever commprehend. I know that in my last post I was talking about having faith, however when you trust in that faith then God starts to really work in your life and slowly starts to reveal things to you. So in this post I wanted to continue from where I left off in the last post.
I know that He is starting to reveal parts of my future and what I am doing is staying encouraged in what those plans are and not letting the physical and mental challenges take control of my life. Like I mentioned in my last post if someone like Nick Vujicic can swim and do all the things that he does then why shouldn’t I. Does it mean that I don’t face REAL pain? No! Does it mean that I don’t wake up some mornings and say that it’s going to be a hard day? No! I don’t want to make it sound like everything is perfect. What you don’t know is that as I write this I’ve been having a really hard time over the last five days. My pain has been intense, and trying to stay positive has been really hard. There isn’t a day that I don’t ask God for help to reduce the pain or help with my attitude. As I ask for God’s help in these areas I’m finding that he’s strengthening me and giving me that positive attitude I need.
Rather than bore you with a long winded post that doesn’t make any sense I am attaching another video of Nick’s that really speaks to how I feel so take a listen. I’d love to have people’s thoughts of what they think about what he has to say?
When Nick speaks to us he speaks about the power that God has and the power that He has to change our lives. Some of these things that he talks about are happening to me, shapping and changing my life and I owe those changes to God. My future is going to be great.
Lately I have been feeling as if I need to post about how my faith has played such a major part in getting me through each day, and the challenges that I have been meeting along the way. Without God in my life it wouldn’t be possible to face dealing with my CRPS the way that I do. If there was ever a time in my life that my faith was being tested, now would be that time. Do I ever get frustrated because I’m not always getting the answers I want from God? Yes! Are there times that I get angry and wonder when will this all end? Yes! Are there times when I get discouraged and find it hard to carry on? Yes! But it’s my faith in God and the plan that he has for my life that keeps me going.
There are going to be times when you want an answer from God yet He doesn’t give you an answer. Don’t give up because everything is done according to His timing. Are you feeling like there is nobody to turn to and that you are facing things alone? Well I am going to tell you that you have God with you at all times, and all you have to do is put your trust in him.
I can honestly say that when all of this started there was anger and confusion. All I wanted were answers as to why this was happening to me. I kept asking why God would let something like this happen to me. Now it’s 5 yrs later and some of those same questions are being answered. Why did I have to wait so long for those questions to be answered? I don’t know!! The one thing I do know though is that there have been changes that God has had to make in me. Is He finished making those changes?No! Does he ask me to stand in faith each day? Yes!Does He have plans for my life! Yes! I really can’t expand on those answers because the only person who really knows the answers is God.
One of things that I’ve had to learn through all this is to trust that He will provide in any situation that you are in. I often ask myself that maybe I wasn’t putting my full trust in Him. As I started putting more faith in Him, I have found that there is a confidence that He has given me that I didn’t have before. This confidence has me standing up to face my adversity in ways I never did before. This isn’t something that has just happened, this is something God has given me as I draw nearer to Him.
There are still lots of things that God hasn’t answered however I keep standing in faith. With that I am able to look adversity in the eye and say that I will fight, and that every time that I get knocked down I am able to get back up. There isn’t a day that my faith isn’t challenged however with that being said God keeps making me stronger and stronger. Do I have my weak moments? Yes I do! However I’m only human so of course that’s going to happen.
As I was going through some videos as I sometimes do I came across a speaker by the name of Nick Vujicic who really does a great job with encouraging people to keep going and to never give up. Please take a listen from start to finish because the message is great.
Today is a great day because spring is coming and our snow is finally melting. From a pain standpoint I’m not doing so hot as my nervous system took yet another flare up the other day. It definitely wasn’t something planned. I mean who expects there breaks to fail on there car sending them through a red light into oncoming traffic!!! That’s what happened and I’m sure that it caused things to get worse in the last two days. I’m just happy that I wasn’t hurt. I don’t exactly need anything else to go wrong right now do I!!!
Sometimes the stress that we encounter can’t be planned for, so in situations like that we just have to deal with what happens. In my case I use my breathing techniques and the relaxation techniques to calm my system to try to recover faster. There are times though that we can control some of our surroundings to make things easier for us. Some of us that suffer from CRPS have a hard time dealing with things like crowds, noise, or just stress in general.
Crowds and noise seem to come as a package deal lots of times. This makes it hard to attend things like family gatherings, or going out with a group of friends. If your always missing these things then it’s easy to become isolated which isn’t good, as well as reducing your quality of life. What you need to do is find a balance so that you can take part in those things as well as not making your condition worse. This then becomes a game of trial and error, trying to figure out what’s going to work. I wish I could say do this or do that, however what works for one person doesn’t always work for the next.
It isn’t easy to explain however what has happened is that over time, I have been able to figure out what I can and can’t take for noise. What I mean by this is that on any given day depending on what my pain is like my body is able to determine how much stress and noise it can withstand before the pain gets to bad. It isn’t something that I just set a limit to. I find that as I expose myself slowly to noisy situations I’m listening to my body more carefully. Then what I find is that I am able to determine from that, how to set limits and work with what my body is telling me.
Slowly I’ve been able to expose myself to things that I wasn’t able to take before. I have a very loud family when it comes to family gatherings, because of the size of our family. We needed to figure out how I could be involved but not let the noise affect me. So my wife suggested earplugs to dull the noise. I’ve tried this on a couple of occasions and happy to say that it has helped. Do I like using earplugs? No not really but if it lets me interact in things that I want to then great. Limiting my time that I’m at a family function is another way to control my pain level. It’s a matter of figuring out your limits, and letting your body guide you and tell you when it’s had enough.
I do have to say that all of this is still a work in progress. I’m still trying to figure out my limits and how they affect my pain levels. What I am saying is that as you figure this out, you also learn to control the stress that you encounter on a daily basis. You start to figure out your limits before you become to stressed. This isn’t something that happens over night it takes time to do this. Even though I’m only able to take so much noise, I find that at least I’m getting out there and trying.
This allows me to feel normal to some degree and not miss out on things that I want to do. If you have trouble dealing with noise and crowds then I encourage you to try what works for you. Eventually the idea is that you are able to increase your tolerance, because your retraining your brain to tell it that everything is OK and that the noise doesn’t bother you.
Well here I am today trying to write another post however I don’t have a lot to say. I’m tired and it’s been one of those days!! I began my day today watching my youngest daughter Katelyn throw up breakfast. Of course this happens just as my wife is walking out the door to take my other daughter to school. So as if it’s not bad enough that she’s sick, about 20 min later my wife is walking in the door with child number two who threw up in the car. So the stomach flu is alive and well in my house by the looks of it. Just another wild and crazy day around our house.
Spring is finally starting to show signs in our parts and the snow is starting to melt. It kind of nice to only have five months of winter around here instead of six so that the kids can finally start getting outside. You can only spend so much time inside before the cabin fever starts setting in. Before long they’ll be heading outside every day to play, yell, and scream for the neighbours. I’m counting the days before peace and quite enters my house.
I can’t believe how quickly this year is going. Kate my 3yr old is now pretty much potty trained and ready to start preschool next week one day a week. Emily my oldest is almost done kindergarten and will be going into grade one next year. I just can’t believe how quickly the time really is going. It seems like just yesterday that we brought them home. For those of you that don’t already know we adopted Emily our 6 yr old from China and Katelyn our 3yr old from Ethiopia. I really am trying to soak up the memories, because it really does go as fast as people says it does!!
I might sound like I get really frustrated with them, but the truth is I can’t get enough of them. They might drive me crazy at times but it only makes me love them all the more. Kate already has her first crush on a boy at our church named Keltin. She’s 3!!!! I knew that it started early!! but 3!!! Emily is this young girl now. Just yesterday she was this little girl that was scared to leave us. Overnight she’s turned into this intelligent young girl going on 18. She keeps asking us every now and then for a husband.
Think about it the next time you complain or moan about your kids. Consider the short time that you get with them as kids. There isn’t a day that goes by that they don’t do something to drive me crazy or get me upset. Is this something unusual? No! Kids will be kids! Love them for who they are and not what they do.
Today is another one of those days. My pain level isn’t great, and the kids are driving us crazy. That’s what we have to expect though with a 3 and 6 yr old. I’ve been having a hard time the last couple of days pain wise and once again it limits the amount that I can do. Yesterday I spent a fare amount of time laying down in my bed because of the pain. On days like this the emotions come flooding back at how things have changed. It reminds me of the fight I’m in right now and how easily my emotions can change. Sometimes I really have a hard time with my disability, and I start thinking about the day my struggling will come to an end As I started thinking about everything I was reminded of a poem that my therapists gave me. Take a second to listen to it!!
Lets face it when your having a bad day it’s easy to let you mind go back to that place that you don’t want it to. You start thinking about all the ways in which life has changed, and lets be honest you start thinking about all the things that effect you in negative ways. When I listen to this poem however it helps me get back into the frame of mind that I am going to reclaim my life.
It’s OK that the pain of what happened comes rushing back, because the chances are that it probably always will. It’s learning to harness that pain and turn it into something positive that takes time. There are so many ways in which you can make positive change in your life. Yes life is different, but why not live it to the fullest. We need to be able to focus our energy on the positive things that we have going for us and not what we can’t do. Take a look at this video I came across.
If this doesn’t motivate you to live life to the fullest then nothing will. When I look at how he lives his life, it motivates me to overcome even more. It’s OK that I have off days and I realize that, however I want to try and focus more on the positive things that are going on in my life. Living life to its fullest and overcoming my obstacles is important to me. We may have things that come back from time to time that remind us of the past however we don’t have to let them effect us the way that they sometimes do. I think I need to do a better job of not letting those feelings effect me.
The one thing about this video is that Nick never lets anything stand in his way. It’s his ability to embrace things for the way they are, and then move on that I like so much. We need to adopt this attitude in order to live life to it’s fullest. It all begins with the attitude that we have. Do you have the type of attitude that Nick displays? I know that I have a pretty positive outlook on things however I also know that I have my times that I’m not so positive. If you were to ask yourself today where you where at in reclaiming your life, what would you tell them?
All I can do is tell you about what I want out of my life, and hopefully it will inspire some of you out there that are suffering to look at things the same way. I’m not saying that things aren’t a challenge at the moment, because they most certainly are. I’m still in a stage where I’m learning to deal with my disability. Strangely enough as time is going by I’m becoming stronger. With God’s help I continue to work my way through this ordeal. There is so much to life that is out there for those of us with disabilities. I want to be able to say that I made the most out of my life. Things may not work out the way that I planned them however I can still make the most out of my life.
When a person is diagnosed with an illness such as CRPS it’s only natural that you are going to face challenges! There can be physical challenges, mental challenges, and all kinds of others. As you try to face these challenges one thing has become very clear to me, that it’s never easy to ask for help in the areas that you might need it. Over time it becomes easier, and you start to understand that it’s alright to ask for help when you need it. Do you have a hard time asking for the help you need? I know that I do.
I’d be lying if I said that I haven’t struggled with asking people for help in ways that I need it. It’s OK to want things to be the way that they were. However at some point you need to move on and accept things for the way that they are. I have really had to learn that it is part of a grieving process that you have to go through. Things are different now and I have had to accept the changes that have happened. You need to make a decision to either move forward or stay stuck in a rut. What decision are you going to make?
I still find that there are lots of times that I fight and resist help from others because that deep desire to want to do it for myself is still there!! I’m pretty sure that feeling will never leave. I’m sure that there are lots of you that would be able to relate to me when I say that the drive to be independent is incredibly strong, sometimes causing me to become moody. It’s not that I can’t be independent it’s just that it’s a little different now. I do really appreciate all the help that people offer however I just have a hard time asking for it.
I’ve had no problem at all however drawing upon my faith and asking God for His help through all of this. Without His help I wouldn’t be handling things the way that I do. Do you have a relationship with God or are you just sitting back wondering where He is? Almost always all you have to do is ask for His help. As you face this kind of adversity you’d be surprised just how much help He will give you.
I am lucky enough to have family and extended family who are there when I need them for help. I can’t begin to thank them enough for everything that they do. My friends are also the same way, always there for me when I need them doing amazing things for us. Then as if that wasn’t enough we have a church family that is always there for us.
I guess what I’m trying to say is that there are all these resources around us when we go through something like this in our lives. It may be your family that surrounds you or if you don’t have family it might be a counselor. It might be your church or your close circle of friends. If you want to move forward in a positive direction then you have to be able to reach out to those people and say that you need there help.
One of the things that I find really difficult as I deal with my CRPS is learning to deal with my lack of energy and pacing myself through the course of the day. If you suffer from CRPS then you know what I’m talking about. There are days that I get out of bed and feel like every ounce of energy has been drained from my body. Do you have trouble managing your energy through the course of a day? Then what you have to do is learn to pace yourself through the course of a day.
Your energy levels are affected in many ways and unless we learn how to manage them, then it becomes more and more difficult to get through the course of a day. First of all the amount of sleep that people with CRPS get is a very big reason that our energy levels are affected. So often is the case that we suffer from broken sleep patterns. The other thing that is a big drain on our energy is our pain. Living in pain 24hrs a day is a very significant drain on our energy. The last big reason that we suffer from a lack of energy is from the medications that we take, and the side effects that they have. This being said it’s understandable that we suffer from a reduced amount of energy through the course of an given day. Do you know how to pace your energy?
Learning to do this can be difficult because more often than not we have a tendency to tell ourselves that we can do more than we really can. As I push myself beyond my where I should, what I find is that I make my condition worse. Sometimes this can cause me to flare up.
When you learn how to pace yourself and manage your energy you find that your days are a little easier to get through, because you aren’t feeling as burnt out all the time. But this wasn’t something that came overnight. I have needed to recognize the fact that I can’t do everything that I necessarily want to do. An easy way to teach yourself how to pace yourself, is to assign yourself an imaginary dollar value to your energy level for the day. You would then assign things that you do in the course of the day with a dollar value. When you have reached to dollar value that you set for that day your finished, it’s time to let your body rest.
So take for example that you have $100.00 to use in the course of a day. You may choose to do 4 small things around your house that have a $25 price tag attached to them on a day that you feel like you have less energy or one big thing that has a $100 total value attached to it when you feel like you have more energy. The point is that when your learning how to work or do things within your limits and not to exceed your limitations.
Do I always do a great job at pacing myself? I would say that it’s an ongoing project and that I could do a better job. It’s not always easy because sometimes the desire to do things, just because your tired of doing nothing overtakes what’s right for you. Slowly I have been learning however that you have to give in and listen to what your body is saying to you. I’m finding that as I listen to my body and pace myself through the course of a day that I don’t get as many flare ups!!
Today my stress level is a little higher than yesterday which may be one of the reasons that I woke up in a fog. My pain level is on the rise however I have had a couple of decent days. If you have been reading earlier posts then you know that I have recently had some surgery and am waiting to have some more surgery done. Well yesterday I went in to meet with the surgeon to find out that I have to wait for another two months until I have something done. Without getting into detail I understand the surgeons reasoning however it’s just hard to sit back and wait while you are in pain.
It’s the waiting that’s the hardest thing to deal with. Waiting for 2 months isn’t bad compared to some of the specialists appointments that I have to wait for. Sometimes I have to wait up to 6 months just to get into see them, and that’s just for the consult to be done. Then you usually have to wait and have tests done so another 3 months goes by before you see him again. My wife is waiting to have some tests done at the moment. She’s dealing with a problem right now, however the date of her test isn’t until October. This is crazy! Waiting for 8 months isn’t right. She then has to wait another month until she sees the specialist. Why do we have to wait so long???
I understand that specialists are busy and that there aren’t enough to handle the demand. I understand that the wait for tests is long. When you allow time to roll by though without treatment then your chances at making a full recovery aren’t as good. This is the case with any illness or disease. So my question is what has to be done in order to diagnose people quicker to get them into treatment faster?
What I find is that people with chronic pain often take a back seat to other illnesses which lead to death. So what happens is that when we go to see the specialists, because we aren’t at risk of dying we get shuffled to the bottom. Now I’m not saying that those cases aren’t important and don’t deserve high priority, however we do get lost in the shuffle and seen as less important. Look at the number of people that live with chronic pain as opposed to cancer or heart problems, the numbers speak for themselves. All I can say is try living with chronic pain for a while and see what it’s like. I can assure you that it’s not a party!!!!
As you can see I am frustrated with all the waiting that I’ve had to do as well as the waiting I’ll have to do in the foreseeable future. I’m not mad at anyone in particular however I’m mad at the fact that I was bounced around like a basketball because nobody knew who to send me to. As a result it delayed my treatment which has made it a tougher hill to climb. I’m not the first person to say this, and it doesn’t only apply to people dealing with CRPS. Its time to shorten our wait times and start doctors to really start listening to there patients when they say they’re in pain!