My pain levels have been up and down over the last couple of days but at the same time I’ve been under a lot of stress so I have to expect things will be a little worse. In a week I’ll be headed to the surgeons office to see how things have been healing over the last few weeks. So far things seem to be doing well but it’s just a really slow process. I’m trying to take things easy but that’s easier said than done because I have lots of winter clean up to do, and I can’t afford to hire everything out. As those of you who are dealing with disabilities know, you become dependant on others to do so much. It’s a constant reminder that your life has changed and you have to work hard not to let it affect you.

Depending on so many others is hard for us and for a long time you may have to rely on those people around you. The hardest part is accepting that help and for the longest time I didn’t want to take it. Once I did though it helped me focus on getting better or adapting in ways that I needed to in order to make life a little less complicated. It was one of the hardest things I’ve had to do in my life because you’ve lost your independence and some of the things you need help with really frustrate you to the core. With my hand being affected I can’t move the fingers on my left, so when it came to cutting up my food I just couldn’t do it. My wife and I would be out to dinner and I’d have to pass her my plate and have her cut up everything. Another in your face reminder of the change that has happened. The good news though is that over time I’ve learned to adapt and for the most part now I can do it myself! It’s about giving yourself time to adapt and making small changes in your life. You can and will regain some of that independence that you lost, it just takes a little time.

As we head into summer this is the time of year where there are lots of outdoor jobs that need to be done. My list of jobs for this year is long and a large amount of those jobs are too tough for me to do. My outlook before would be just to put those jobs out of my mind because I couldn’t do them as well as it would be far to expensive to higher them all out. This year is going to be different though because I’m going to find ways to adapt to do those jobs. I have the confidence now in that I can overcome any obstacle that’s put in front of me. It might not be that its done the same way but I’m going to do them again!

So you might be a little on the frustrated side at the moment but never lose hope. It just takes a little bit of time and effort on your part to adapt and gain back some of that independence that you’ve lost.

My goal today is to finish this post because it’s already been two days in the making and I just have to get this done. The past couple of days has been kind of crazy because work is finally being done to try and complete our basement. It’s been four months with no basement and do I ever miss it! The truck came in yesterday to pour the floor, and sometime in the next week hopefully the building will start after the concrete has had a few days to set. Over the last couple of days as things melt I’ve also felt the need to get into the garage and do a little spring cleaning, but most of that will have to wait until I feel more up to it.

As spring for most parts of our country is in full swing we are just getting rid of all our snow, and I can hardly wait to get out and start shooting pictures. It’s been a really rough winter in our parts and I’d be lying if I said I wasn’t going a little stir crazy from being inside so much. Things are now starting to melt quickly but winter made yet another appearance on Monday bringing with it 5 – 10 cm of snow. It did melt rather quickly which was nice. The biggest concern at this point in time is the concern over flooding. The watershed authority has forecast our city right in the middle of where some of the worst flooding is suppose to occur. Up until yesterday things looked to be in pretty good shape but over night the sandbags have gone up in the areas of concern and the water is rising in areas. We’ll see over the next few days how things turn out.

Today I wanted post about something that bothers me when it comes to dealing with my disability. It has to do with the issue of handicap parking. I’ve posted about this once before but the comment I got from someone the other day really annoyed me and I felt the need to post about it again. As I parked in a handicap spot the other day a person came up to me and said “you don’t need handicap parking your just abusing its real purpose”. His comments took me by surprise and I thought it was kind of obvious by looking at me that I had a disability.  It took every ounce of energy from within and a whole lot of grace not to lose it! I felt like educating him with a few words of wisdom of what I’ve been dealing with over the last seven years. Having to walk the extra distance from the back of a parking  makes a big difference in my pain. If I can shorten the distance I walk then I last for a longer period of time. I have problems with my walking and the last time I checked that was one of the reasons we have handicapped parking at stores. Or maybe for the person “like me” who only has the use of one hand and has trouble carrying and loading his groceries!

Once again I was forced to defend my disability which has so often been the case over the years. This person doesn’t know me and yet feels the need to be my doctor and diagnose my illness. These types of judgements happen way to often and make the people dealing with their disability feel bad. Those of us with disabilities didn’t choose for these things to happen to us and are coping the best we can, and people passing judgement only makes things worse. I briefly informed him that I had every right to be parked where I was.

So that’s my rant for today! Sorry but I think the occasional rant is ok. It’s the reality of what I face on a day to day basis and think it’s important to share. I usually write posts that are positive but this is just one of those times where I need to bring across some of the negative things I face in dealing with all of this. Have a great weekend!

This weekend the kids have gone to be with their aunt for the weekend, a much needed break for my wife and I. Last night was date night even though I’m not doing very much. I wanted to go out for dinner but seeing as I’m still having trouble sitting for very long we ordered dinner in and had a quite dinner and evening together. It’s great just getting time together with no kids to worry about, as I’m still spending a fare amount of time laying down and taking things easy.

The pain is still pretty intense at times in my shoulder and clavicle area. The areas they opened in my back are feeling a bit better ever day, and so slowly things are on the mend. It’s been a really long two weeks and the recovery process has been a lot harder than I’d like but the surgeon is saying that everything is looking good. The plan for now is just to monitor things to make sure we caught the infection, as well as do a few other tests. Next week I’ll also go in to the implant clinic, and we’ll try and fine tune the implant for my upper limb. We will also do an x-ray to see if the lead in the upper implant has shifted at all.

When I woke from the surgery and the unit was turned on I started feeling the stimulation down my right arm instead of my left. Immediately I started thinking here we go again! In case you didn’t know this happened once before. My mind started thinking about having more surgery to reposition the lead but everything has worked out, and they were able to program it so that the sensations are being felt where I need them the most. We still however want to check and see if anything has moved. At the same time they will spend some more time adjusting the unit so that it gives me the most effective pain relief possible. There is a lot of going back and forth between the hospital and home at the moment. Sometimes I just don’t know what to think when you pass hospital staff and they know you by name!

Even though this surgery has been one of the harder ones, I’m happy with the overall results. I didn’t think that putting the battery in my clavicle was going to be comfortable but once the surgical pain is gone I’m sure it will be fine. With next to no fat in that area, I was sure the battery would really stick out and be uncomfortable. I was all prepared to have a large lump sticking out because of the battery but my surgeon did an excellent job and you hardly notice it at all. Not that it really matters because all that’s really important is that it helps with a persons pain relief.

The timing of all of this wasn’t great because there is so much going on around here. Hopefully this week the construction company will start work on our basement, and there is the usual spring cleaning that needs to take place around the house. At the moment though lots of rest is what the doctor wants to allow my body to heal. For those of us dealing with CRPS, healing after a surgery is always takes so much longer. So not pushing myself right now is what’s in order.

Everything was cleaned out during the surgery and I’ve been put on antibiotics and will undergo further tests next week. We are hopeful that the treatment will work but it’s a watch and wait type thing. The surgeon will run some tests to make sure that nothing has gone to the spinal cord as well. It’s one of those kinks that I didn’t need thrown into the mix but I guess it is what it is! The pain is super intense at the moment and I’m doing my best not to lose my mind. I’m on day four and hopefully in a day or two we’ll see more improvement. Yesterday I couldn’t understand why the pain was getting worse but after talking with the staff at the implant clinic things now make sense. I won’t go into detail but after talking to them about what was done during surgery,  I have a better understanding of why all the extra pain.

My intentions were to finish this yesterday but that just didn’t happen. I’m having a really hard time at the moment dealing with all of this. Going into this surgery I thought I was prepared mentally but clearly I had that part wrong. I can deal with the physical pain but at times everything gets to be to much and I just want it all to be over! It’s also taking it’s toll right now on the rest of my family, with having to make lots of adjustments while I get better. Sometimes that can be harder to deal with than having to deal with recovery itself! It isn’t fare that my family has to be affected the way that they are. At times like this I get angry at the CRPS and the changes it’s caused in my families life. This family has stared adversity in the face before however, and like all those other times we will get through this one as well.

If anything all of this drives me more to beat this illness, and in order  to do that I need to trust that God is going to help me do it. It’s been a rough week and my emotions are running on high! Have you ever had that dream where you need to take a breath but you just can’t. Over and over in the dream you gasp for air  but you just can’t seem to get the breathe until you wake up. Well that’s kind of how I feel this week, I’m having trouble getting my breathe. Once I open my eyes and get that breathe  I know everything will be ok. It’s just going to take a bit of grit and determination to get though all of this.

All of the feelings set aside the surgery itself is going to help improve things for me. I already know without a doubt that moving the battery to where it is now was the right decision. I have to admit I didn’t like the thought of where it was going to go. Sometimes I just need to listen and not question! Thanks for listening to my frustrations in today’s post, sometimes just laying it all out there helps.Well enough rambling for today and besides I need to rest up.

I’m hoping and praying that this doesn’t mean more surgery. However that does remain a possibility and this point in time. The pain at the moment is pretty intense as I have two  incisions in my back and the one in my front. I’m trying to make my brain understand that it’s surgical pain so that the CRPS doesn’t flare up to much. I’ll update with more of the details later but over the next few days I’ll be busy recovering. Well for now I have to draw things to an end before I fall asleep!

So it’s now the day after I started this post and upon trying to finish up I discover to my frustration that when I entered my site all my work was gone!!! It took me the better half of last night to edit and fine tune what I wanted to say and all of that is gone. I had even backed up my work but for several hours last night the server went down. There must have been a glitch because nothing saved. Worse than that is that I felt really good about what I had written, and there’s no way that I’ll be able to duplicate it now. So frustrating! All that was left was my first paragraph so I guess I’m starting things from scratch.

My pain has been on the rise over recent weeks and even with my implants I’m having trouble controlling it. It’s all part of that up and down cycle that you go through when your diagnosed with CRPS. It can be very frustrating and at times almost never ending, but rest assured there is a light at the end of the tunnel! When I was first diagnosed I went through a period of time where I had lost all hope for any dreams that I had for my life. I had to ask God to restore that hope and give me vision but it took time and I had to realize that this wasn’t something that was going to happen overnight. God’s timing is just that! It’s His timing and you have to have faith that He’s going to do great things in your life.

When your traveling down that long dark tunnel it can seem like your never going to get to the end but you have to find any little positive and grab hold of it. Focusing on the dreams that I have for my life motivates me to never give in. Taking my kids back to where we adopted them from in Africa and China is a dream I want to see lived out. As a photographer it has always been my dream to photograph the eight wonders of the world. Actually only seven remain because I’ve already been to the Great Wall Of China! These are just a few of the many dreams that I have for my life. My point is that I’m not going to give up on making those dreams a reality. In other words I believe that those dreams are going to happen.

Wow! I was just starting to get on a roll with this post when I got a call from the hospital. It was OR  scheduling and they’ve booked my surgery for next Tues! I’ve been hoping and praying for a fast date but is that ever fast. Now I just need to try wrap my brain around how quickly everything will happen. All the different alarms are going off in my head, and I need to try and process everything. I’m believing that this is just another step towards getting better and beating this illness!

What I really wanted to post about today isn’t just about physical pain that I have to deal with but the affect this illness has on the brain. A lot of you reading this don’t realize that just to write one sentence can sometimes take me two or three attempts, making it frustrating to say the least. Medications and other symptoms because of the CRPS can make it extremely tough to function some days.  My short term memory isn’t what it use to be before all of this started.

This is the side of CRPS people often don’t see or relate to. When you tell someone that your dealing with chronic pain often they just associate all your symptoms with physical pain and miss the mental side of it. Often when I’m having a bad day if someone is trying to explain something to me, they have to explain it over a few times or in very simple terms just  so that  I understand it. When this happens it often leads to anxiousness and frustration because you want so badly for your brain to work!

When your having one of those days it can be really hard when a person just doesn’t understand what’s  going on inside your head. It’s this part of CRPS that I wish people understood more! If people did then they’d understand a lot of why we think and act the way we do so much of the time. You can blame some of what’s going on up in our heads on the medication however not all of it. When people see me outside of my home all people see wrong with me are the physical deformities that have been caused by the CRPS. What they don’t see is the mental anxiety that I deal with, or with how nervous system is busy running out of control in my head and the inability to control it.

When your talking to a person who knows nothing about CRPS and the pain that you feel, that person often says it’s all in your head and you need to put the pain out of your thoughts. That’s exactly the problem you can’t put it out of your head! You struggle daily to take your thoughts away from the pain and try to focus on something else. Trying to take your mind off of the pain is just the tip of the iceberg when it comes to dealing with your brain. There are often times when anxiety affects a person because of everything else that’s going on inside their head. I could get into all kinds of different issues that are going on up in a persons brain but my point is that it isn’t just the physical that people dealing with CRPS are affected by.

Ok! When I started this post I had planned to finish it this morning however after driving the kids to school my camera was calling my nane! It’s been too long since I got out and the result is the pictures you’ve been looking at through the post. Sometimes the best way for me to deal with all the confusion my brain has to deal with is just to get out and clear it by doing what I love to do! It was just what the doctor ordered! Happy Easter everyone!

Over the last couple of weeks my body hasn’t been very happy and to be quite honest it has me thrown off. I usually do a really good job with managing my pain but with all the stress as of late I’m not doing a very good job. I’m pushing myself harder than I should and I need to slow things down. Normally I’d do a really good job in realizing my limitations, but at the moment I’m not doing a good job with that at all. There are all kinds of stresses at the moment and I constantly want to push myself past where I really should and as a result it’s causing more pain.

So this afternoon I started to think about why things have been so up and down as of late. I’ve hit a wall and my body is screaming in pain at the moment, so I’ve been forced to slow down more.  I’m trying to deal with that but having a really tough time in doing so. There are periods that I go through where not being able to do the basics around the house really bothers me. Watching friends do everything they’ve done for us during this time is hard for me because I want to be right in there helping. However having such amazing friends is an incredible blessing to our family. I’m constantly being reminded at the moment that I can’t do as much as I’d like, and as a result it brings back all the mix of emotions that you go through with CRPS. This is where God comes in!

From day one of this journey I’ve said that I can’t get through all of this without God’s help! Right now is one of those times! When I’m hurting I turn to Him! When I need wisdom I turn to Him! When I need finances I turn to Him! Whenever I need strength I turn to Him! Is it easy standing in faith that God can provide all these things when I need them? It’s one of the hardest things for me to do but I never waiver because He always provides. I know that when I need Him the most he’ll always be there and that I can give whatever problem I have to Him. If I’m feeling discouraged then I can hand that over to Him and it’s replaced with encouragement and strength. The hard part is asking God for those things because He can’t provide you with the things you don’t ask for, and I believe He can and will provide if you just ask.

Are you feeling alone? Are you feeling like you just can’t take anymore? Are you getting tired of fighting your battle on your own? Then you need God on your side to fight with you and for you. It might be in the form of guiding a surgeons skillful hands to do your surgery or helping you with finances but whatever the need He can provide. So that being said I’ve given all my issues to Him and standing in faith that everything will work out.

As a result I’ve been pushing myself way to hard and am now paying the price for it. The other night was a night with next to no sleep at all because I couldn’t get my body to shut down in any way at all. My mind kept racing all night long with all the stress that this is adding and it was a harsh reminder of what life has become now that CRPS is a part of my life. I kept finding that as I tried to do everything possible to slow my brain down it only made things worse because I just added more stress on top of the stress that was already there. I’m taking everything in stride however and not letting it affect me mentally the way that I used to! That’s the big difference!

It is frustrating however that I lost all control to try and slow down my nervous system. Even putting tools that I’ve been learning along this journey sometimes don’t work and I have to keep telling myself that everything is ok! Never knowing when this will happen is the frustrating part of it all.

As well I continue to wait for a surgery date to move the battery for my implant. Not much has changed in the last week except even more chaos! When will it all end because I’d really like it to! Now it’s time to get on with the rest of my day and before I do that I have to go brush the concrete dust out of my teeth again!

The last several months I’ve been having a lot of problems with pain in the region of where my battery has been internalized in my back. So the plan is to remove the implant and move it to my front where hopefully it will work out better. The implant itself has been working but it’s just been the placement that has been a real problem. It’s gotten to the point however that I can’t take the pain anymore. I have a really high pain tolerance but a person can only take so much before you have to say enough already.  So I’ve been praying for a quick surgery date to get it taken care of. In a funny kind of way all the stuff going on in my basement is a good distraction while I wait.

There has been little or no time lately to get out to take any pictures which I really miss! Then again with all the snow we have at the moment it isn’t very easy to get around to all the areas I like to photograph. I can hardly wait for spring and the melting to happen. Two more months and we should be in the clear! Maybe even earlier if spring decides to break early. Winters are long in my area and I’m tired of all the snow and extreme cold. My pain doesn’t like it either, and so it’s time for a little warmth. Right about now is when I wish I was on that tropical island not having to worry about dressing in several layers of clothing. Although the last few days have been pretty warm and some of the snow has melted off.

When the seasons are starting to change like they are, those of us that deal with CRPS are reminded just how bad the pain can be! The swings in temperatures are hard on our bodies and can cause real sudden changes in our pain levels. It’s just something we have to deal with! Having my implants helps with controlling my pain but it doesn’t mean I don’t have my days where the pain gets out of control. Today I’m fighting to hold things together. It’s clearly one of those days where I just can’t put together what I want to say, so I’m going to stop here and regroup for a day or two. Once things calm down a bit I’ll be back ready to push forward and put my thoughts to paper!