In the last several weeks I’ve been pushing myself a lot harder than I normally would and as a result my CRPS is showing me its response. Without the implants things would be a whole lot worse. So far I’m very happy with what they are doing for me. I’ve received lots of emails asking me what life is like now that I have them, and so in today’s post I wanted to try and answer some of those questions. There are a few big changes and other changes that aren’t so big that have occurred.

If your looking for CRPS to disappear then you shouldn’t be getting the implants because it’s about obtaining a quality of life that you didn’t have before the implants. You still have to deal with certain aspects of CRPS, it doesn’t just disappear. Nobody can say what your pain is going to be like after the implants but for me the pain control has been worth it. It’s about educating yourself and then making a choice. When I went into it I did a lot of praying and let God make the difficult decisions for me.

My mindset going into the surgery was that if I could get any pain relief at all, even if it was 10% then it would make it all worth doing. I didn’t let myself expect that I was going to get the 60% that the doctor said was possible. It isn’t easy but once you wrap your thoughts around that it makes the decision easier. The surgery and everything you have to go through is the hardest part of it all. Its been four months and I’m mostly over all the recovery but I’m still getting better.

Lots of people have asked me what it feels like to have the batteries in my body and my answer is that I hardly notice them at all. I have two and the one in my back is the one I notice more than the one in my abdomen. The only real negative that I can find is that with the implant that controls my upper limb, there is a little bit of reduced movement in my neck. It really isn’t all that bad though! The biggest hassle is trying to get used to your new routine that you’ll have to get used to, like charging your battery every week and packing around the gear that you’ll have.

I’ve also had to get used to a regular routine of charging my implants. I charge my units on a weekly basis so that I don’t ever have to worry about them running out of charge. It’s just easier for me to make it a part of my weekly routine. Travel is another aspect that you’ll have to get used to but again it’s a very minor detail in the grand scheme of things. If your flying make sure you arrive early but most airports are good in dealing with things. I’ve had one bad flight in about four since having it done.

You have to expect that there are going to be a few trade offs when it comes to getting the implants done. I happen to think that there are more good than bad and that my overall experience has been very positive. Take the time to really think about it and as I said before educate yourself. If you have the knowledge then it allows you to process everything and make your decision. If you have any questions as I’ve said before please feel free to contact me.

I’ve also made a decision that this weekend is going to be a weekend to slow down. My pain hasn’t been great as of late so I need to take some time to myself and try and reduce the stress. So I’ll be back Tues to post again. Talk to everyone soon.

So I stopped for a moment and tried to think of a few words to describe her as a wife and mom and the list just went on and on. It wasn’t an easy task because there isn’t just one or two words to describe her. When I try to think of words that best describe her, I think of ones like loving, devoted, caring, unselfish, giving, compassionate, thoughtful, loyal, understanding, hard working, sensitive, and the list just keeps going! Your a very special person that deserves a very special thanks for all the things that you do for our family.

Life gets really busy sometimes and it can be easy to forget to stop and just say thanks!  Your kids and I want to take the time to tell you just how much we appreciate everything you do for us, and so we want you to enjoy your special day and take some time for yourself. It’s time for a time out! Make this day all about you because you deserve it!

So keeping things short and sweet today I say Happy Mother’s Day!

I want to take a second to thank my friend Lydia over at Sea Beautiful. She runs a fantastic site which I really recommend that you check out. The site never fails to inspire and they are always looking for opportunities to pay it forward. They were kind enough this month to write a post about me and my site and so I just wanted to say a big thanks! I really appreciate sites like theirs that help me in trying to get my message out. If I didn’t have that help from others then I’m not half as effective as I’d like.

With that being said I wanted to tell everyone about a fantastic new site on CRPS/RSD that I have been told about. The site is called PARC for short or Promotional Awareness of RSD and CRPS in Canada. It’s a site designed to support, educate, and inform about the illness. What’s nice is that it’s a website that not only educates those in the CRPS community but it also targets medical professionals about the early diagnosis and treatment of CRPS/RSD. There are a whole bunch of things that the site offers, to many to really get into so I would urge you to use the link I’ve provided to check out the site. I will also be putting the link on my sidebar if you want to access it.

After six years I have a pretty good idea of what CRPS is all about but after looking at this website I realized that there were still a lot of things that I didn’t know about it. As well I was able to link certain things together that I didn’t realize may be related. So from an educational side it’s a great site and if your looking for more information this is where you will find it. I find that a lot of sites have medical terms that make things really hard to understand. This site lays it out in terms that are easy to understand. In Canada slowly the education is starting to come but we need more than just websites and places to find materials. We need more programs put in place to educate. Public awareness needs to be better. If we can do a better job of educating in all the right areas then it’s going to lead to a better chance of early detection. If that happens then there is a better chance of reducing some of the symptoms that we deal with.

When we got to talking about all the different reasons that my pain could be up we weren’t really able to draw one conclusion as to why I’m flaring up the way that I am. It isn’t stopping me though I keep pushing and moving forward believing that it’s going to be an amazing day when I’m pain free! With the pain being worse my sleep has been affected as well and I’m lucky if I get a good solid sleep. So the last couple of days have been a little rough when it comes to functioning the way I’d like to.

We aren’t sure but there is the possibility that coming down off the medication might be causing some of the extra pain as well. It’s a fine line to find the right balance of medication to combine with the implant. It’s possible that I might be too low and as a result we’ve bumped my meds up to see if it makes a difference. When we first started talking about reducing the meds I knew that it wasn’t going to be easy on my body and that we’d have to do lots of adjusting! It is nice though that I’m able to come down a bit off some of the meds. Although like they said it isn’t easy to do because your body has to do a lot of adjusting that it has to go through.

Overall what was encouraging was that they said I’m doing well post implants. Even though I’m having a few problems with elevated pain you need to look at the big picture. A few months ago we were hoping to reach a target with my pain medication. I’ve now reached that target and all I need to do is some fine tuning. If you look at my overall quality of life there is no question that it has improved. So even though here and there I’m having to deal with a few flareups I’m happy with where I’m at at this stage in the game.

I’m going to keep today’s post short because well really if I’m being honest my brain needs a rest. I just need some me time! So I’ll see you all in a few days.

After getting off the phone with the agent that dealt with my complaint, I felt as though she understood my concerns. I really did think that my side of the story had been heard and that some of the issues that I had would be addressed. Well when the phone rang the other day I really wasn’t prepared for what was going to come jumping through the phone. When I spoke with the agent her whole demeanor had changed, and it was pretty clear that there was no use in pursuing things any further.

She started out by explaining that they had watched the video of my family and I going through security. To make a long story short she said that my wife and I watched the equipment go through the screening device and that we had every chance to stop the bag with the equipment from going through. Funny thing is my wife was already on the other side of the scanners. Apparently I’m suppose to stop the officer from putting the bag through. Didn’t I tell him not to put it through when I handed it to him??? Aren’t they the ones with all the authority??? I’m sorry but I was probably upset by what was being done and was frozen in shock!

So based on the fact that I apparently watched it go through my claim is denied! The way they treated me was never brought up and once again it was pretty clear that she didn’t want to listen to what I had to say. It was apparently ALL up to me to stop that bag from going through the scanner and because I made no effort they take no responsibility!! I think they handled things very poorly and the least they could do is admit that. So now I’m left with nobody to take ownership. Wouldn’t audio have been great to have in this case.

At this point in time all I can really do is try to forget about the way we were treated and move on. Would it have been nice to get a sorry we made a mistake? Of course it would but I’m not willing to lose any sleep over the issue. At the end of the day they are the ones who have to live with how they conduct business not me. I just have to hope that my medical devices keep working fine. Thanks for listening to me rant today! Talk to you all soon.

Like I’ve said it’s been a hectic week and it hasn’t helped that my pain level has been up. Why my pain level is up is I really don’t know. It could be several reasons the reduction in pain medication, increased stress, or even trying to get over the exhaustion of the vacation. All I know is that up until now I’ve been feeling good and the implants have been doing their job in helping to control the pain. Speaking of vacation I wanted to tell you a bit about something that happened on my way home.

When I received my implants I knew that I was going to have to go through a bit more when it came to going through the security in airports, and I have no problem with having to be checked out a little more carefully. I give myself lots of time to get through and I’m ready to be subjected to anything and everything. When we went to Disneyland I didn’t have one problem on the way there, it was on the way home that I encountered a problem.

At each and every airport I ask the security agent who’s taking your things and putting them through the scanner to NOT pass my medical devices through the machines. I can’t take the chance that the scanners will mess up my devices seeing as their combined value is $5000. So I hand everything to him and ask him if he could walk them around and swab them and check them like all the other airports have done and had no problem with. What does he do HE PUTS THEM THROUGH THE MACHINE! To make a long story short one thing led to another and we wanted someones name to make a complaint. However they refused to give us anyone’s names. Even the supervisor refused to give us his.

We tried to explain why we were upset but ended up being met with arrogance and it was clear that what we had to say was not of importance. Not to mention that my kids were getting upset by what was going on! The funny thing is that right on the form that we were given to file our complaint it wanted names and badge numbers of the employees. It was very clear however that we weren’t going to get very far with the people in that airport so I was resolved to walking away upset by what had happened.

When I got home I called the company and to my surprise got someone great who apologized for the way we were treated and promised me that they would investigate the matter. She told me what I needed to do on my end and what would be done on her end and then assured me that if there were any problems with my equipment in the future that they would take responsibility. She took the time to listen which went a long way. Admitting that he made a mistake by putting my things through the machine would have gone a long way! Anyway it’s still all being worked out but that’s my rant for today!  I hope you enjoyed the pictures and I’ll talk to you soon.

Now as it turned out because of how crowded it was I found it easier to walk for short distances and then sit and take breaks. I feel I did a good job of letting my wife know when I couldn’t keep going and when I could. This is something that isn’t always easy to do as others of you may know who struggle with disabilities. Our pride often stands in our way and becomes a wall that proves to be hard to get around. Its been an area that I’ve had to pray about and ask God to help me in getting past. At the start of all of this it wasn’t easy to admit that I needed help in various ways. My pride was one of the things that often stood in the way.

Slowly I started to break down that wall and get myself to a point where my pride wasn’t as big an issue. There will always be times where you will want to do things on your own or push yourself too hard just to do things without help. However you need to be able to give yourself a break and admit that sometimes you might need a little extra help and that you can’t do it alone.

I’m not at all saying that this is easy to do at all because it really isn’t. However if you humble yourself and give yourself permission to receive help then it’s going to be a lot easier to get through each day. It’s all part of accepting things for the way that they are. So I have a challenge for some of you out there who struggle in this area. Allow yourself to set aside your pride and see what happens. I promise you that you’ll start to knock down that wall that that may be standing between you and moving forward!

One of my concerns when we set out on this trip was how I was going to do with all the walking that you have to do at Disneyland. I went prepared to rent a scooter if I had to but found it easier just to take frequent breaks, sitting where needed along the way where I needed to. With the crowds being the way that they were it was a lot easier to do it this way. As I got to the last day I could tell that my body was starting to tell me that I’d done enough, so I’m really happy that we went for the length of time that we did. If we had stayed any longer then I would have found it difficult to keep going. I paced myself well through this trip. With all distractions I’m sure it helped me in keeping my mind away from the pain.

Overall I felt good and that my CRPS wasn’t stopping me from doing the things I wanted to do. Really what it comes down to is that I feel as though I had control over the CRPS and not it having control over me. I was able to enjoy a family holiday and not spend the entire time in pain or wondering if what I was about to do was going to set off my condition. A lot of that was knowing my limitations and staying within them. You have to find a piece within yourself to know when to say enough and stop fighting your own mind. I went in to this trip saying to myself that I wasn’t going to push myself to hard and that I wasn’t going to let pride stand in the way.

There are too many highlights to the week to mention but one that can’t go without mention was when my eight year old daughter challenged me to going on the Tower of Terror. Let’s just say that it never happened! Yes! I’m a wimp but something doesn’t sound so appealing about dropping 10 stories in about 5 seconds. It seems as though I have a real thrill seeker in Emily because she also wanted to be on California Screamin which is a roller coaster that turns you upside down. I did manage to find it within myself to take my daughters on Dumbo which is more my speed!

It was a great week filled with memories for a lifetime and I’m glad for the most part that the pain stayed under really good control. Now it’s time to get back into routine and start with a hectic schedule once again. So I’ll talk to you all in a couple of days and I hope to get caught up on some of your blogs out there as well. I’ll post some more pictures of the trip in my next post as well.

I’ve mentioned before that with CRPS one of the things that comes along with is difficulty in sleep patterns. Now since my surgery I seem to get a little more broken sleep but it’s never very good. On an average night I maybe get 3 or 4 hours of broken sleep. What I mean by broken sleep is that I never get into REM sleep. When I am able to get any sleep I can usually count on walking up five or ten times. Usually what happens is that my body stays awake until  it just gets to that point where it can’t take it anymore and it just has to shut down.

A lot of people don’t understand that this is all a part of CRPS and that most of us can’t remember the last time we had a great sleep with a solid eight hours of sleep. I could take sleeping pills but the effects that they have on my body just don’t make it worth taking them. Half the time they make me feel a whole lot worse so it’s not worth taking them. Not to mention that the pain usually ends up waking me up anyway, and it’s just adding to all the pills I’m already taking. It really ends up being a pros and cons decision and there end up being more cons than there are pros!

So as a result of the lack of sleep my body has had to adapt to living with less sleep than it should be getting. I wish it was different but this is the way it is at the moment. My daughter asked me yesterday if I’d had any dreams to which I answered “no” and that I couldn’t remember the last time I had a dream. Sleep to some people may be seen to some people as something that really isn’t all that important. To me it’s one of those small things that I’d love to have back. For now I continue to do relaxation therapy to get myself relaxed enough to sleep. Sleep is one of the things that hopefully over time the implants will help me with. Until then I try to do the best I can! See everyone soon!