Are You Willing To Raise Your Game?

Well I’m back in writing mode again today. It was a busy week that started out last weekend, celebrating Ethiopian Christmas with a group of other adoptive parents. There isn’t a day this week where we haven’t had something on the books with our kids. Throw in my daughters 11th birthday and it made for a really crazy week! Somewhere in there came trying to find a way to manage my pain. With flare ups being frequent at the moment I need to stay on top of things. As I mentioned in my last post its a new year bringing with it new strength, hope, and vision.

This week I kicked off my plan to be more aggresive in bringing awareness CRPS. I did some snooping around to see where we stand not only in my province of Saskatchewan but in Canada in regards to chronic pain. What I found I had already come to expect to a certain degree! What I found made me mad and in a lot of ways I’m even more fired up about making a difference and creating change. I want to find some answers when it comes to CRPS and chronic pain in general. Sure we know a lot more than we did five years ago but we are barely scratching the surface when it comes to answering a lot of the harder questions.

To tell you the honest truth I had half of this post written and decided that I had to go back and change everything because I wasn’t in the right frame of mind to write this. I had started listing specific faults and mentioned specific names of organizations when it really wasn’t about that. After my blood stopped boiling and a level head returned, I deleted everything and started fresh! My intentions were not to lay blame but to find the areas of opportunity that need to be fixed or improved upon. Trust me when I say there is room for oportunity in so many different areas when it comes to the fight against Chronic Pain and CRPS! One of the things I will point out is that several websites of organizations were not up to date or lacked information on events, or information on chronic pain. In my opinion these are key areas that you can’t ignore or forget about. What we can’t forget though is that in order for these organizations to function they rely heavily on volunteers to help them.

So when I look at it with this perspective then it takes on a different light. Without volunteers that information sometimes can’t be filled in on websites. It then leads me to what am I trying to do to make a difference? Am I giving time of myself to try and bring about change or am I just sitting back waiting for other people to make it happen? Nobody is saying that you have to take on a major role! Maybe a strength of yours is organizing, and you could put together an event in your community. Even doing the simplest of things like writing a letter can make a difference. After going through a few sites that’s exactly what I decided to do. I wrote a letter to the Minister of Health here in Saskatchewan asking a few questions about what’s being done here in my province to fight the battle against chronic pain. I took it one step further however and wrote a second letter to the Minister of Health for Canada asking a few of the same questions just on a larger scale.

Unless we take a good hard look at what’s being done at all levels, then we really don’t have our finger on the pulse to help raise awareness or changed to help facilitate a cure. Change can take place but it takes a team effort to make that happen on all levels, meaning right from government to those of us that suffer and all the others in between. After digging a little deeper however it couldn’t be more evident that as a community of sufferers of chronic illness that we need to raise our game! I will personally state that I don’t do enough and need to find a way to raise my game. I think its easy to sit around and wait for change to happen, but difficult to push yourself to become involved and be a part of the change!

So my challenge to you is this. Do whatever it might be no matter how big or how small to get involved to do your part and bring about change!

 

 

 

 

 

 

 

 

 

Share

A Fresh Start!

The New Year is under way and now its time to get back at it. After some great family time out at the lake we are back into routine with the kids with school, sports, and everything else that makes life busy. Then throw in a chronic illness and it makes for a lot of fun! Even though our family fought through colds and sickness over Christmas we still had a fantastic time with the rest of the family. We even welcomed a New Years baby into the family on Jan 1, 2015. My nephew and his wife welcomed their baby girl named Everly Jean 7lbs 12oz into the world! Congrats to Ward and Nicole! On the pain front things have been up and down. I’m trying to keep myself as distracted as possible and push through all the flare ups which have been coming often as I continue to heal from surgery.

A big thanks to Julie for putting together a guest post for me while I was away as well! It was nice to get away and have everything organized to the point where I didn’t have to even get near a computer. Now if I can only put together a few posts to try and stay ahead of the game this year. I’m not big on putting together New Years resolutions but if I had one this year it would be that I’m going to do a better job with with being a advocate towards CRPS. I’ve already started making some minor changes to my site and there will be a few more coming. It’s really a matter of organizing a few things and adding others. I haven’t felt stronger about making connections within the chronic illness community and trying to make a difference.

As I’ve mentioned before 2014 was a challenging year but I believe it has changed me in some very positive ways that I need to now pursue. As I start 2015 I’m  choosing to put last year behind me, and getting to work on the list of goals I’d like to accomplish this year. Its time to start doing a lot of praying and beat down my CRPS to take back control. My photography has been a big part of that giving serving as a great distraction but because of my physical health had to be put on the back burner a lot last year. So for this year a goal of mine will be to get all of that back on track. So far that’s off to a good start as I’m already making some changes to my photography website Ross McCreery Photography. Along with my main photography website I now have a Facebook page  https://www.facebook.com/RossMcCreeryPhotography that updates my latest work. Check in on both because there are a few surprises in the works.

There isn’t much of a message to today’s post except that I’m starting fresh for this year full of more strength and determination! Once again God has helped me get through a lot over the past year and it wouldn’t be right if I didn’t acknowledge that. Without His guidance to get through the recovery over the last couple of months I would have without a doubt gone crazy! I also know that even though I’m still recovering that there are some very powerful lessons to be taken away from all of this. Once all the dust clears and I’m fully recovered I’m sure I’ll be able to reflect on those but for now I’m still trying to navigate my way through things. Like I’ve said on so many occasions it doesn’t matter if its a big victory or a small victory because a victory is a victory! Each one draws you closer to the biggest victory of them all defeating your chronic illness!

 

 

 

Share

CRPS 2014

It isn’t very often that I’m able to be organized enough that I can take time away from writing posts for this site. However this Christmas I wanted this time away from writing so that all my time could be spent with family, not tied up on a computer writing every couple of days. In other words it’s a technology free Christmas including phone! Cottage time at Christmas is always cozy full of great visits with family, good food, and we can’t forget down time from life in general. It can be hard to carve out time like this so I want to take full advantage of it.

As we get get closer to the end of the year its once again time to look back and look at what 2014 had to offer. It was an interesting year to say the least, and one in which I’d really like to put behind me. I’m sure the rest of the family would be in total agreement with me. Now that my surgery is done and over with hopefully I can get back on track and start moving forward again. There might be some recovery still but at least the worst is behind me. All the waiting for surgery and the extra pain made it really hard to stay positive and there were a lot of times where I just found it hard to keep going. There were moments through the year where I really had to stay on top of my attitude and make sure that I didn’t let myself sink to where I didn’t want to go. With CRPS it’s so easy to slip into a depression without even being aware because of the fight that your enduring every day. I’m looking forward to a year filled with more positive and more victory over this illness.

Throughout this last year there were lots of days filled with moments where feelings of anger could have come rushing back if I had let them. God is good however and He helped me work through those moments. Through the year there were constant reminders of just how raw the emotion could be at times. Just the other night the emotional stress of dealing with CRPS came rushing back when I was in the ER with my daughter. There was a patient that had come into ER who was beside us and she was dealing with chronic pain. The doctor had asked her how she was dealing with that pain. She answered him by saying that she had been fighting as hard as she could, but that it had gotten to the point where she was having suicidal thoughts. It almost made me start crying because I knew exactly how she was feeling! I knew just how much pain she was dealing with and how it can push you to your very max.

I guess that what got me thinking about this post. It’s been a year filled with being pushed to my max but every time God has helped me get through. I’m looking forward to an upcoming year where I see good things and more small victories. It wasn’t that the year was terrible because if I see a lesson in this last year it was that I was being tested over and over. What choice was I going to make in how I dealt with all the challenges I faced? Was I going to choose to let them defeat me and rise up and see the positive? Over and over this was something that I faced last year and every time I rose up and decided I was going to defeat any negative that tried to seep in. That’s not saying that it was easy because lots of times I wanted to let it seep in but I didn’t. I had my moments where it was hard to get out of a funk but I always found a way to see the positive through all the negative.

I’m glad this year is coming to an end and I wish you a Happy New Year! If you’ve had a bad year or a tough year, I hope 2015 is the year that things turn around for you and that you see amazing things happen in your life. Most of all I hope you see victory over the illness you face!

Share

Tis The Season: 13 Ways To Enjoy The Holidays Without Getting Stressed Out!

As you read this I’m relaxing with family trying for a moment to put pain behind me focusing on laughing and having fun! During the coarse of this week I’m trying to stay away from the computer to focus on being with family. I hope those of you that read my blog are having a great Christmas with family and friends. Wishing only the best for you over the holidays and see you in 2015! In the meantime here’s a post that’s been prepared by a blog friend Julie over at “it’s just a bad day, not a bad life”. Like me she is a CRPS sufferer and advocate. Please check out her site in the link below to find out more about her.

When you think of the holidays are you more like Buddy the Elf or Gumpy Cat? Some of us can’t wait for January 1st, whereas others dread January 1st as the season will be over! Which ever you are, getting a handle on your stress with help with flare ups and allow you to enjoy more of the holiday activities!

What can cause stress?

EVERYTHING!

Traditions, high or unrealistic expectations, money, family, disappointing family and friends, traveling, family photos, shopping, not getting enough sleep, drinking and eating too much, forgoing normal patterns, decorating, holiday parties, seeing old friends, perfectionism . . . and I could go on and on!

And you’re probably thinking

“It’s just a little stress . . . right? It doesn’t matter. Once the holidays are over I’ll go back to being healthy and less stressed and things will be fine.”

WRONG!

Your body doesn’t care if it’s a big stress or a little one; if it’s temporary or chronic. It still reacts the same way! Regardless of the stressor, stress can affect our body in many predictable ways. Did you know that there are approximately 1,400 different biochemical events that are fired off when we encounter stress? And we wonder why we get headaches, gain weight, experience aches and pains, why our energy is depleted and why we eat and drink more!

An even scarier fact is that because of our society today, we’ve become mentally numb to many stressors in our lives! We may not even realize how stressed our body really is because we’re so used to life’s pressures and expectations. That is, until we experience a flare up.

But there is a positive fact in all of this!

We have the power to control how we respond to stress! We don’t need to be the victims of our own emotions, thoughts and attitudes. We can control how we respond to stress and we can become more sensitive to stressful situations. There are proven, scientific ways to help rewire our brains! So instead of grabbing that bottle of eggnog, try one of these ideas instead!

Exercise your mind, body and soul!


• Mindfulness
• Be present in everything you do
• Eating
• Shopping
• Driving
• Set alarms on your phone to remind you to slow down and take it all in
• Meditation
• Focus on your breath
• Pick a mantra
• Headspace or similar phone app
• Take a meditation class at a local yoga studio

• Mindfulness
• Be present in everything you do
• Eating
• Shopping
• Driving
• Set alarms on your phone to remind you to slow down and take it all in
13waystostressfree

1. Meditation:
When you’re running around, stressed beyond belief- STOP and focus on your breath for a few moments. This can help you take a short time out. You could also pick a mantra and whenever you’re feeling frustrated start repeating it. To get you started into meditation, I always recommend the Headspace app or the Buddify app. Both phone applications break meditation down into a way that is SO doable for the average person! Try it out and see for yourself.

2. Mindfulness:
So often during the holidays we run run run and aren’t really present. Try to be present in everything you do. Whether it’s eating a cookie, shopping for a present, or driving – really focus your attention on what you’re doing NOT on what you still have to do. An easy exercise to help you get into the moment can be achieved by setting alarms on your phone. Set maybe 2 or 3 of them to go off at random times. When they go off, make a conscious effort to be present in your current activity. The simple act of using your alarm can start to help train yourself to tune in to your life and to become more present.

3. Squash Negativity and Amp Up The Positivity:
Don’t let words like ‘never’, ‘worst’ or ‘ever’ into your vocab! X them out forever! If you’re beginning to feel down about a certain situation, see if you can flip your perspective on it! Maybe you do have 58 more things to do on your To Do list, but hey! You already finished 87 of those things – so you gooooo!!! Recognize your wins and celebrate ALL your victories!I also like to write inspiring quotes on post it notes and stick them all throughout my house. They can make me smile and if I’m in a bad mood or upset, they usually can help me start to flip my perspective.

4. Allow yourself to experience your emotions:
The key to squashing negativity is to allow yourself to feel your emotions. It’s ok if you’re feeling sad, mad, scared, tired, upset, frustrated, overwhelmed – feel the heck out of those emotions! You’re obviously feeling them for a reason. If you take the time to feel them and tune into yourself, you can start to unravel the meaning behind each of those emotions. Once you identify your issue, you can begin to become your own biggest cheerleader! What I do is I agree upon a set period I’m allowed to feel sad or frustrated. During that time I cry, scream, yell, be by myself- whatever I need to do to get it out and completely allow myself to fall apart. Once that period is over, I pick up the pieces off the floor and do my best to move on. I focus on things I love and bring a smile to my face.

5. Set Realistic Expectations:
You know it will happen… Aunt Susan will say something negative about your potato casserole. She ALWAYS does! So, you should expect it. Instead of getting upset at Aunt Susan this year and taking it out on Grandma, decide to change the subject and thank Margie for bringing the Ham. Also lumped into setting realistic expectations is realizing that you CANNOT and DO NOT have to do everything yourself. Get your family to help, be clear on how others can help you! Don’t take the whole season on yourself.

6. Don’t Dwell on ‘What If’:
You’ll never know what would have happened if you got to the store 5 minutes earlier or if you would have bought 4 packets of chicken instead of 3. It’s a game you’ll never win – so why play it? Along with the words ‘never’, ‘worst’ and ‘ever’, X this out of your brain!!!!

7. Practice Gratitude:
I could talk for 15 hours on why practicing gratitude is one of the greatest things you could do for yourself. Being thankful for what you DO have really can put a situation in perspective. Each night before bed, I write in my journal what I’m thankful for. It could have been my ability to get out of bed that morning or maybe it was for the ability to stay in bed all day and rest. No matter how many negatives you encounter in a day, there are ALWAYS positives that you can be thankful for!

You can also practice giving gratitude to others while you’re out and about this holiday season. For instance, be thankful for the person leaving the mall and letting you take their parking space, send love and thanks to those volunteering their time to help the less fortunate, and try to do small random acts of kindness. I bet you’ll even end up leaving the holiday season feeling so much better after beginning a gratitude practice!

8. Keep up with your regular exercise program (as best you can)
If you already have a regular yoga, running, cycling, crossfit or weight training program – try to keep up with it. Your body is already in a routine and when you disrupt your rhythm you can end up causing a lot of issues – one major one being a flare! So say YES to that yoga session, even if it ends up being 10-15 minutes long. Every little bit helps!

9. Eat a Balanced Diet
Make sure you’re receiving your proper nutrients this holiday season. And don’t forget to drink your water! I’m not saying don’t enjoy yourself; I’m always of the opinion that we should live by the 80/20 rule. 80% of the time we should eat clean and 20% of the time enjoy ourselves! But if you know that gluten is an inflammation trigger for you or that eating dairy makes your nerves go crazy, try to be cognizant of what you’re eating and pick and choose what’s best for your body.

10. Maintain A Regular Sleep Schedule
Disruptive sleep schedules can wreck havoc on our body’s immune system. And if our immune systems are already compromised then we’re really in trouble! The ironic thing about sleep is that even though we need it so much, often pain and fatigue keep us UP! How can we battle back? The two meditation apps I spoke about earlier have sleep meditations that help relax your body and get your ready for bed. There are different yoga sequences that can help you get into the mood – like legs up the wall, child’s pose, and forward bend. Meditation and yoga sequences are the 2 major players I use to combat the pain that’s keeping me up! Whenever I’m having a really high pain day, I concentrate on breathing into the area of my body that is ailing me. To do this, I’ll take a deep breath in and visualize my breath traveling to my knee (that’s what bothers me the most). Then when I exhale, I visualize my breath diffusing my pain way. As I keep breathing in and out, eventually I ‘diffuse’ the pain enough to where I fall asleep or I get so relaxed and caught up in watching my breath that the relaxation puts me to sleep!

11. Music
Everything in our environment plays a part in our stress levels – even background noise! Do you have a favorite song or artist? If you’re in a bad mood, put it on! I always say there are 2 sure fire ways to get me in a good mood- Celine Dion or Christmas music! I found an infograph that’s actually kind of funny. They took a poll on which Christmas songs people thought were the most relaxing and the most stressful. Take a look at it and remember to steer clear of the ‘stressful’ ones!

12. Aromatherapy
The last 2 years I’ve really been into using essential oils to combat my health and mood. There are so many scents that can help uplift our mood! Make sure you get PURE essential oils (like from doTERRA), NOT fragrance. Fake scents like ‘fragrance’ can actually cause headaches, immune responses and a whole host of problems. Do yourself a favor and steer clear of these. (If you look on the back of perfumes, candles, lotions, shampoos, body wash, etc you’ll see ‘natural fragrance’ or ‘fragrance’ listed quite often. No matter how ‘natural’ they claim they are, if they list fragrance as an ingredient – don’t buy it! It’s not worth the health issues.) And if you don’t have any essential oils try this: put a pot of water on the stove, slice up some oranges, lemons, throw in a few cinnamon sticks, a splash of vanilla extract and whatever else you may have. Let simmer on the stove and your house will smell delicious (and will uplift the spirits of your family!)

Examples of mood elevating oils:
Lemon – uplifting, anti-depressant
Orange – mood-elevating
Peppermint – refreshing, mental stimulant
Rosemary – invigorating
Thyme – refreshing, purifying, herbal

13. Spirituality
And lastly, don’t forget the reason for the season! It doesn’t matter if you celebrate Christmas or Chanukah, there is a huge spirituality aspect of the season. We get so caught up in the big box store’s version of the holiday season that sometimes we forget the actual reason that we’re celebrating. Don’t forget it. In fact, make it a point to FOCUS on the reason this year. I bet you’ll end up enjoying it so much more!

There are many things we can do to help manage our stress, but there are factors that are out of our control. What we can do is try to arm ourselves with a strong toolbox of proven tools that we can call upon when we’re thrust into a stressful situation. Don’t get discouraged either! We didn’t learn to be stressed out overnight, and we’re not going to completely change our thought patterns overnight either. As you work on it, it will start to become second nature. Unfortunately, it is something we’ll have to focus on for the rest of our lives – but if you find techniques that you enjoy, it can add some fun and light to your day!

What kinds of techniques do you pull out when you’re in a stressful situation? Comment below so we can all draw on each other’s experiences!!
Wishing You A Pain Free Day!

Share

Merry Christmas!

It’s a busy time right now for most of us as we try and get ready for Christmas in a few days. If you have kids like I do then you have concerts and last minute preparations to make before Christmas morning, along with so much more to do. In a few days I’ll be heading out to the lake for Christmas to gather with family for the holidays, so I’m trying to be a bit pro active and organize a few posts for between now and when I get back. I want to take a few days away from the computer in order to focus my time on what’s most important my family! The next post you read will be from my blog friend Julie over at ” it’s just a bad day not a bad life “  who has been nice enough to put together DSC_9288post for me. If you get the chance go on over and check out her site

Recovery continues to be very slow but things are moving in the right direction. It takes next to nothing right now for a flare up to start but I’m managing better than I was which is a good sign. I’m in this for the long haul and there’s a fight starting to come back that’s been missing for a bit. We all go through our periods where discouragement tries to set in, and I’d be lying if I said I hadn’t been dealing with some of that over the last couple of months now. To say that this latest surgery hasn’t knocked me a bit off track wouldn’t be the truth. It’s been really hard to stay focused and positive when the recovery process has been so slow. You begin to wonder if anything will change because from day to day the changes are so small. When this whole implant process began a few years ago I entered into it knowing that there were going to be a few bumps and bruises along the way. Did I expect so many bumps along the way? No! Never in a million years. It comes with the territory though when you sign the paperwork, and you have to deal with it the best you can! I need to look at the fact that in the end, these implants give me hope and do make a difference in my quality of life.

They say the best medicine is to laugh and that’s what I intend to do with our family over the Christmas break. All the schoolwork, sports activities, and other scheduled stuff that makes life so busy will be put on hold for a week to spend time out at the place you see below otherwise known as our cottage. There’s no other place I’d rather be at this time of the year. With the exception of missing all of my family out in Vancouver!

There’s nothing better than all gathering at the amazing rink my inlaws make every year for our families to enjoy. Our cottage is just down the road from here. I couldn’t be more blessed than to have a place like this to go out to every Christmas. Pictures and words really don’t describe how therapuetic this place is when we go out there. It really is like being in a Winter Wonderland with music to skate to as well. Now with my CRPS I can’t skate but I sure can take in all the atmosphere that gets created in this magical place. The laughing and all the good times! The even better memories that have been created over the years in this special place. Not everyone is blessed to have a place like this to go to, and so for that reason I never take it for granted. So for the next week we will move out there and I’ll be able to go to my happy place never forgetting how much God has blessed my life.

I’d like to come back in the new year refreshed and and full of energy. Its been a tough year one that’s seen some downs and distractions taking place. My goals in 2015 are to awaken that fire that’s within me to beat down CRPS and to once again start doing things that people have told me I can no longer do. So often people say that things will never change and that life can never be as good as it was. Well I refuse to see it that way and I expect to see great things for my life. So with that being said Merry Christmas to you all!

 

 

Share

A Christmas Reminder!

My plan was to start this a few days ago but I just haven’t been up to doing any writing. It’s Christmas time once again and the season is well under way. Although Christmas is taking on quite a different look this year I’m still feeling all the joy that this time of the year has to offer. This will be a quiet season for our family this year once again spent out at our cottage on the lake. We are looking forward to some great family time as this has been a very stressful couple of months for us. It will be great to just sit back and try and redirect focus on something other than all that’s gone on the past little while. I just need to laugh and have some great family times and put some of the last little while out of mind. So why not bring to you a post filled with all the things that make this time of the year so special in my books. Now most of you will probably be getting Christmas cards mailed off very soon if you haven’t already. Here’s a family that takes there Seasons Greetings to a whole new level.

If I only had half the character that this family had I’d be sending out my greetings like this all the time. We all have that standard form letter that we dread having to sit down and write, trying to think of all the years events. Why not put together something totally off the wall this year! I couldn’t help but put this into my post because I found it as I was looking for a couple of Christmas songs on social media sites for this post. Telling other family and friends about your year in review can be fun and clearly the Holderness family sees it that way.

Christmas my favorite time of the year? I’ll get to that in a moment. With so much turmoil going on in the world around us, and in our own personal lives, its to easy to just keep going and forget to slow down and think about everything that this time of year encompasses. Do you ever stop and really listen to the lyrics of those Christmas carols that you’ve heard a million times? Amidst all the busyness with all the shopping, parties, and time spent with family and friends do you stop to reflect on what this time of year is really all about. We see the words written over and over on cards and through mass media ones like peace, joy,hope,love, and so many more. To often I think people just see them as just that “words” that make up songs or words that are placed on cards.

So why do I love Christmas so much? As I sing each carol or read each card I am reminded of the amazing gift that I was so blessed to have been given on Dec.25th. The birth of Jesus!  The one responsible for giving us hope! The one who gives us joy, the one who brings us peace, the one who gives us unconditional love, and so much more. What better gift could anyone ask for! We are surrounded by reminders everywhere we go and and in everything we do at this time of the year. I am reminded that in spite living my life with a disability I still blessed with having a life abundantly full.

I’m looking forward to the next few weeks when I get to spend lots of time with friends and family. Lots of great laughs will be had along with eating great food, which will leave us with the need to go and lose a few pounds!

 

 

 

 

 

 

Share

What Can A Neurostimulator Do?

Well a week has passed and my recovery continues to be very slow moving. This week I saw my neurosurgeon, and the news was pretty much what I was expecting to hear! The Dr. told me that the surgery was very extensive and that it was just going to take time to heal. Six months to be exact! The good news is that the symptoms that I’m having to put up with are all ones that are to be expected with the type of surgery that I had to have done. I learned that in order to get the wire into place the surgeon had to do a laminectomy on two of my vertabrae at the base of my neck. If your like me and are totally lost by the name then let me explain in plain english for you. A laminectomy is where they remove a portion or all of the lamina from your vertabrae. If your still lost then take a look at the diagram below and you’ll get a clear understanding of what they had to do. Back view of lumbar vertebra with a portion of bone removed to relieve pressure on the spine.

After walking out of the surgeons office everything was really clear as to why the pain in my back continues to be so bad. On a positive note over the last couple of days the dizzy spells have been good in that I haven’t had many. Small improvements are good! All that matters at the moment is that I’m headed in the right direction. There are still a few questions that I wish the surgeon had answered more definitevely but he wasn’t very forthcoming with the answers. There really isn’t much more to say other than that the implant is working. As the surgery heals I should notice a difference in how the implant helps with the CRPS pain.

So if you don’t already know what I’m talking about then your about to get a crash course in how the neurostimulator works. About two years ago I started the process to have both of my stimulators put into place. One of the stimulators helps with controlling the pain in my affected leg and the other in my hand and forearm. Now let me start by saying the route of the neurostimulator isn’t for every CRPS patient in trying to control pain. The other well known treatment for CRPS at the moment is ketamine injections which I will get into another time. So its important to speak with your doctor about which treatment is best for you. Without getting into great detail its pretty easy to sum up what the neurostimulator does.  It’s job is to block out the pain signal from your affected limb or area of chronic 220px-Anterior_thoracic_SCSpain. alerts-device-medtronic-neurostimulation-140317-02

The stimulator sends out an electrical impulse that reaches the brain faster than the pain signal from the affected area of chronic pain, so in other words it replaces the pain with a tingling sensation. The payoff with this type of treatment is a possible reduction in pain, and the ability to reduce the amount of medication that one has to take. On days where my chronic pain is really bad I have the ability to raise the level of stimulation, in order to better my chances at reducing pain. It isn’t a cure but its pain management that can possibly give you a better quality of life.

For me the stimulator took me from walking with a cane about three years ago to walking without. That was in my lower left leg proof that it can work! My upper implant hasn’t worked quite as well, but I’m hopeful now that its fixed that I’ll get good results. Yes it’s a difficult procedure to go through but when it works the results can be good and the reduction in pain can be longterm. In other words its worth putting your body through all the torture.

implantable-neurostimulator-spinal-cord-rechargeable-programmable-70691-3026759What great about the neurostimulator is that they do a ten day trial and leave the battery outside your body to see just how much pain relief you get. After the trial period you review the results to see if its worth internalizing the battery. I chose to go the route of the neurostimulator because I thought it would give me the best results over a long period of time. When I was first considering what course of treatment to take the neurostimulator was a better choice for me because I wasn’t sure about the Ketamine Injections. Ketamine Injections are a drug based treatment over a 5 – 10 day stay in hospital. While there seems to be short term pain relief over the time that your having the treatments it seems as though the long term results aren’t as good. The jury seems to be out on this however because I’ve spoken with quite a few people who have said the infusions work really well. In my opinion it really comes down to what’s right for each person in their particular case. There are risks on either side of what you choose and that is certainly something you need to look at when picking out what’s right for your treatment plan.

What choice are you going to make? Are you going to be happy with your decision? These are the questions you need to ask the surgeon!

 

 

Share

My CRPS Is Testing Me!

DSC_5745Have you ever been so discouraged that you just wanted to give up? Well that’s how I’m feeling at the moment. I’m now into week five of recovery and I’m not very far ahead. Last night we had a wedding to go to and I was going to get there if it killed me. Call me stubborn, hardheaded, or just plain mulish but I wanted to get out for a bit. Well kill me it almost did! We had planned out how this was going to all play out, and I was going to skip the ceremony because I have problems sitting for very long periods of time.  The best thing we figured would be to go to the reception that way if I needed to leave I could. I made it for about an hour and a half before the pain got so intense that I couldn’t take it and had to head for home.

I’m frustrated at the moment because the doctors are saying that my body is just going through a rough healing process and that I just need more time. How much time exactly is that? I will be meeting with the surgeon this week to discuss things along with a few concerns I have. It feels like I’m not getting anywhere very fast and there are days where I just have to have a good cry. Yes you guessed it your getting one of those posts today! Never in my life did I think that I’d be pushed and challenged as much as I’m being at the moment. When your body is screaming with pain your brain is telling you one thing but God was right there telling me another. Over and over I’ve said I’m going to beat my CRPS and that will happen one day. I might be down today but tomorrow is a new day and the fight will resume.DSC_5747

Days like yesterday are hard because things with CRPS can spin out of control so fast. Adding surgery into the mix makes things a lot more volatile, and you never know what the outcome is going to be! So last night was one of those nights where the surgical pain combined with my CRPS caused my CRPS to spiral out of control. Its a fight that I’ve been going through since having the surgery, and one I know I can and will win. My winning spirit just wasn’t there last night however and I had to fight to stop the tears from flowing during the reception dinner. Times like these are difficult to battle through and all kinds of thoughts enter your head. My wife asked me tonight if I regret having the surgery and without hesitation I said “no”. Why? If I say “no” then I’m giving up on something that can be life changing, and take me in a very positive direction.

Am I feeling sad and frustrated at the moment? You better believe it! My emotions got the best of me as we drove home and I couldn’t hold it together. So I had a minor meltdown in the car and at home later. CRPS is a battle where every second of every day is consumed by pain. Sometimes it has to come out and show itself and if that means crying then get out the box of kleenex! I am thankful that I have a wife who understands me and knows how I’m feeling most of the time. I felt as though I’d spoiled the nights fun for the family. My wife then reasured me that in no way had I spoiled anything, which was just what I needed to hear.

DSC_5746For some reason over the last couple of years it seems as though I’ve faced more obsticles, and come up against more challenges than I have in a while. As I walk through each of these challeges, I always walk away feeling like I need to be more of an advocate for CRPS and chronic pain. Something is pushing me to go outside my comfort zone and I need to pursue it. So one way in which I’ll be doing that will be in making a few changes to my site. I mentioned this a while back and seeing as I can’t do a whole lot at the moment I have the time to make the changes. I’ll be introducing a few new links and blogs to my site and from time to time putting up a guest post. I’ve often talked about making these changes but never really got around to making them. Even though most of the content on this site will stay the same, there will be tweaks here and there to speak more towards CRPS and chronic pain! That’s it for today I just don’t have enough gas in the tank and I need to rest so talk to you all soon.

 

 

 

 

 

 

 

 

Share

Hitting A Wall!

Who knew that a month after surgery I’d still feel like I was run over forwards and then again backwards by a Mack truck! Yes it’s been about four weeks since the surgery and there’s still a long way to go. The mental battle that I’ve had to face through all of this has been huge. On more than one occasion I’ve had to tell myself not to give in to fear, or any other distractions that I’ve come up against along my path to recovery. On Wed I faced yet another obstacle as I ended up heading into the ER because things took a turn for the worse. After not being able to get ahold of my neurosurgeon or my GP I was advised to head down to the hospital to get things checked out.

When I got to the hospital I knew I was in for a bit of a wait. Nothing unusual for a hospital ER right! The doctor came and did a few tests as they always do, and then ordered a few more things to be done and told me that it would be a few hours before we got the results back. So I did a little more waiting and grew a little more tired, before a nurse came and told me they were moving me to another part of the ER. I felt like I was being put in isolation with nobody around and nobody coming to check on me. Under normal circumstances this quiet place would have been great for a person with CRPS to wait. On this night however it was too quiet giving my mind to much of a chance to think, and all of a sudden the pot boiled over and everything just came crashing down on me. I couldn’t put on that brave face anymore, and the tears started to roll down my cheeks as all the stress started boiling over. Of course the timing was perfect because just then the doctor walked in and she could see the emotion all over my face. After talking to the doctor for a bit longer, not only could I hear it in her voice but I could see in her face that she could understand the pain I was in. I could see she really understood me!

There wasn’t much that the doctor could do for me to help me and although I left the hospital after a long night frustrated that nobody could help me, looking back not everything about the evening was negative. After the fog had cleared and by that I mean the frustration and everything that boiled over that night I was able to look at things in a much more calm and realistic manner. I needed that alone time for everything to come up to the surface. If you keep pushing everything down then it builds and builds leaving you like that earthquake or “the big one” waiting to happen. If that were to happen then everything around you would come crashing down around you crushing you in the process. Isn’t it better that we let off pressure every once in a while so that it doesn’t build and build until we can take no more.

As I sat in that room that night letting my frustrations come to the surface saying prayer after prayer I knew that there was a reason this was happening. I may not have realized it then but when I think about it all now it makes perfect sense. It was time for God to hear my thoughts, prayers, and all the frustrations that I needed to get off my chest. Once again when everything seems to be be getting to be too much, and just when I start to doubt that people are listening to what I’m saying He shows me that there is someone listening and that someone cares. In dealing with an illness where it can be hard to get people to listen, over and over He shows me that no matter where or when He will be there. As is the case with the team of people that have been put together to form the staff at the implant clinic. I really believe that God placed each one of them in their position for a reason.

Sometimes you just have to do a lot of sorting out of all the garbage! Ask yourself is everything in all of this bad or is there a lesson deep down beneath all that trash? Or quite simply do you just need to let it all out because God listens even when it may not seem like nobody else is!

 

 

 

Share

November is CRPS Awarness Month

It’s Nov 1! What’s so special about today? Well it’s the start of CRPS Awareness month! So over the next thirty days you’ll be hearing a lot about the illness that has impacted my life so much over the last nine years.  Seeing as my site talks about CRPS on a routine basis, I had to try and think of how I could do my part in trying to raise awareness over the next month. So what your going to see on every post from today until the end of the month will be a fact about CRPS. So without delay here is today’s fact.

Fact #1    Many health care professionals and consumers are unaware of its signs and symptoms. Typically, people with CRPS report seeing an average of five physicians before being accurately diagnosed.

With my case it took about six different doctors and then a flight out to Vancouver to get my diagnosis. It took about a year and a half in total before I finally knew what I was dealing with, and before I could get any type of correct treatment plan put into place. At the least someone should have been able to tell me who to see or where to go. When nobody in the entire city is able to direct me as to where to go there’s a problem. Now I firmly believe that not every physician is going to have an answer to everything. Nor is it fare to expect that they are going to know every disease, illness, or medical mystery that’s out there. That’s where those of us who do have a diagnosis have a responsibility to step up and help educate, and I do believe that’s happening.

In the nine years since my diagnosis here in my city the physicians are getting better at recognizing the symptoms of CRPS however in other areas it’s very clear training is needed. While I was in hospital at the time of my implant surgery, over and over I had to educate the nurses on what CRPS was. I found myself explaining how my body reacts to pain numerous times, and the different symptoms that CRPS presents. It got frustrating because there were lots of times where their lack of knowledge stood in the way of them being able to treat me effectively. The first three days or four days were spent trying to get my pain under control because they didn’t truly understand what I needed in the way of medication. Or the simple fact that as a CRPS patient my medication needs to be kept to a strict schedule in order to best control my pain. During those first few days they struggled to help me with my pain. On day five along came one of the staff from the implant clinic that works with me. After she made a simple change to my meds things were better controlled.

A little education in those first few days would have made a big difference in the way that my treatment was carried out. I’m not upset with the nurses at all because they didn’t have any background with CRPS. There’s a real training opportunity there however in the way that CRPS patients are cared for. Those training opportunities are only going to happen however if those of us who are dealing with CRPS stand up and speak out. We need to give our feedback to the proper people and tell them that our care matters. So with all of this being said CRPS Awareness Month is a great chance to start educating! This month I challenge all my fellow bloggers and social media gurus with this. Every week post a fact on your blog or form of social media you use the most about CRPS. If you don’t blog or go on social media then tell a friend or colleague something about CRPS every week!

Lets use this month to make an impact!

 

Related Posts Plugin for WordPress, Blogger...
Share