Facing Adversity with Faith

 
As most of you know from my post a month or so ago, that I have been fighting through some increased pain. To say it’s been testing me in every way that it possibly could is an understatement. Would you believe that I’ve written this piece three times, and every time I am stopped by a mental block of some type. So once again CRPS has decided that it was going to rear its ugly head like only it knows how to do, forcing me to wage a war against it as always.
Back in October I battled through one of the worst flare ups I’ve had in probably ten years. The pain quickly intensified and soon I would find myself headed to the ER, unable to control things any longer without help. Certainly a harsh reminder of how this rare disease can unleash an attack at any moment. Always waiting for an opportunity to defeat you!
Living with a rare disease you go through some days and nights that are going to be the fight of your life. This particular evening was no exception. The battles are never easy to navigate through and difficult for the entire family. However we know that with each situation that we face that God arms us with a strength and power from within. It isn’t a question of if we will win but when we will win this war.
On nights like these naturally your mind becomes filled with thoughts of fear, doubt, anger, sadness, and a host of other emotions. If you know me at all through this blog though, then you know that this is where I begin to speak out through prayer. We pray for peace of mind, wisdom for the physicians, strength and above all healing. Why! I guess because I’ve been through a lot of uncertain situations in the last thirteen years with CRPS, and over that time I’ve seen a lot of answer prayer during that time. This particular night was no exception.
First of all you have to understand where things were at up until that point of the night. When the pain got to be too much I asked my wife to take me to the hospital. Before leaving I said goodbye to my two girls whose strength through all of this reduced me to tears. Instead of being sad or upset by seeing their father in such pain they stayed strong and prayed over me. An answer to what I believe would be the first of three prayers this night.
 When we walked in the doors of the hospital it seemed as if it was going to be one of those nights that too often those of us with rare disease face. With lack of education and understanding of CRPS you often come against obstacles within the medical community. Sure enough this is what we were met with upon arrival at the hospital. We spent the next few hours wondering if this was going to be how the entire night unfolded.
As we waited to see a doctor my wife and I tried to find humor in being laid across a bench at the entrance to emergency because I couldn’t stand or sit. She tried to find ways to make me laugh or ease my mind as we faced this difficult situation together. At a time where I should have been filled with fear and so much more inside there was a peace.
After finally being taken to a bed what happened next was what I believe to be another answer to prayer. Of all the ER physicians on shift I was seen by the one who was familiar with and knew the treatments related to CRPS. What you need to understand is that a lot of physicians don’t know much about the disease. She made some adjustments to my meds and ran a few other tests but above everything else my pain level was back at a manageable level.
Why out of all the physicians that were on staff that night did I get the one who had the knowledge on CRPS?  Why didn’t fear consume my every thought that night? How is it that my family stays so strong through such trials?  When we declare God’s word out loud then something very powerful happens. So I absolutely think that by doing this we had an answer to prayer. Looking back at things now it is very clear just how much God was doing through the course of the night.
Look! I’m not going to hold back in any of what I am trying to say. I only hope you understand what it is that I’m trying to say. We need to be bold and go after those things in our life or situations that we face. We do that by proclaiming the word of God over them. If we do that then we will see amazing things happen in our lives.
Hi everyone!I know it been a while since my last post but I’ve needed a bit of a break. With family and multiple advocacy commitments it hasn’t left a lot of time for writing. Yet its such a vital piece in helping me to express myself with all that rare disease has thrown my way! Some days it just feels like such a never-ending battle and I’m not going to lie its hard. I wish I could explain what its like to wake up in the morning ready to take on a new day, yet feel as if you’ve had the “crap” kicked out of you already and it’s not even 9am!
CRPS is so much more than just chronic pain! Yet we focus on the pain because that is what we know and hear about most of the time when it comes to this disease. Pain, swelling, and a fire burning that I wouldn’t wish upon anybody are most definitely the primary symptoms affecting me. However there are numerous other symptoms that people affected by CRPS and other chronic illnesses suffer from, and we don’t hear or do enough about them. Things like stress, social withdrawal, irritability, loss of interest, poor concentration, easy tears, lack of energy, sadness, and depression just to name a few. So let’s just say that the pain side(or the ones we hear about most of the time) are “Part A” and the invisible ones(not heard about of enough) are the ones that make up “Part B”.
We talk about one side when really both sides come as a package deal. The articles that I read in relation to my own diagnosis CRPS, always seem to address issues surrounding the pain but don’t seem to go much further than that. I can’t help but think that if we spent more time on educating about both sides, that we would be so much more effective in how we treat these illnesses. The best example I can think of to back this statement up, is the high suicide rate that comes along with CRPS. What are we doing to address it? I get that patients are desperate and being pushed to their limits because I’m one of them! In order to effectively treat and manage however we need to bring both sides of the puzzle together. This is often where the problem lies.
There is no one reason for how or why things breakdown. We as the patient have a voice and need to do our part in speaking up! If we want things to change then it starts with us. That means talking to our physicians, members of government, and others who have an active role in our healthcare system. We can’t just remain silent and hope that everything magically changes itself. To create change then we have to take an active part in trying to make that change happen!
On the other side of things lets look at the healthcare professional or physician who has been highly trained to perform that roll to the best of his abilities. I decided to look up the definition of physician and this is what I found!
A physician, medical practitioner, medical doctor, or simple doctor is a professional who practices medicine, which is concerned with promoting, maintaining, or restoring health through the study, diagnosis, and treatment of disease, injury, and other physical and mental impairments.
The use of this definition isn’t to slight physicians in any way but rather to illustrate the point I’m trying to make. Most of what I have dubbed “Part B” is contained within the last two words “mental impairments” however it isn’t confined to just those two words. Just like with the patient there are opportunities within a physicians profession that could help in bringing together the necessary pieces.

 

Look! I could find all kinds of reasons for why these problems exist but that’s not the point of me writing this. There’s a problem and we need to start working towards fixing it. I’m not the expert when it comes to policy or the healthcare system but I am an expert in my own body and what I have had to deal with over twelve years since diagnosis. I can bring value to any conversation that happens, and can be effective in trying to bring about change!
If I do my part then I don’t think I’m asking for too much when I ask others to do theirs. I get that chronic pain, rare disease, chronic illness, or however you want to label it are tough to diagnose and treat. The fact remains that there needs to be a basic level of care and treatment that one has to receive! When you speak to others within different health communities they will tell you that those basic needs aren’t being met for whatever reason. That’s what needs to change.
So I’ll end with this! There are some of you out there who have crazy powerful stories that need to be heard. Those stories can be a huge part of how we can influence the change that needs to happen around us. Look at your personal journey as a way that you can inspire, motivate, and empower those around you. A simple story can be so powerful! Don’t be that mouse that hides in the corner but the lion that is loud and can be heard for miles around.

 

 

“The Crisis”

 

Last night was one of those typical nights where you toss and turn trying not to lose your mind! With pain levels spiking because of a flare up there wasn’t a whole lot to do but do what I do every night in praying that the pain eases. Nights like last night are typical of someone who deals with CRPS, Rheumatoid Arthritis, Autoimmune Disorders, or any other chronic pain condition for that matter. The last thing I wanted to do today besides wanting to crawl into a corner and rock in the fetal position, was tackle the very simple task of every day life! Most of you get up you have a cup of coffee and then you go about your day. For me I wake up take twenty pills to ease my pain and have to carefully plan what I can and can’t do, or what will expend to much energy causing me more pain!

I’m passionate about standing up for my fellow survivors who live with chronic pain! So the waters I’m about to enter today are solely my own views and nobody but mine! Just want to make it clear so that there are no misunderstandings. I’m writing this from my view as the chronically ill patient! Over the last little while the whole opioid crisis has been drawing a lot of attention and I just want to express my opinion of this whole issue. Governments are wanting to take opioids away from chronic pain sufferers and it would be a disaster waiting to happen.

There is a tremendous amount of fear and anger out there in the chronic pain world because of what I will refer to as “the crisis” in this article. I along with others don’t take them out of choice but out of necessity to manage and have the quality of life that I do. Yet some people would be quick to label me as an addict! I do my best to take low dosages and use alternate methods to manage my pain where possible but the reality is that not all alternate methods will work to relieve my pain.

These in my opinion are not the actions of someone who is looking to abuse medications. If I could get rid of my medication and the pain today then I would! Believe me when I say ten years of pain has been long enough! I’m not looking to take the next pill or the other 20 others I have to take throughout the day!

Patients are getting passed from physician to physician in looking for treatment and diagnosis. This makes the patients look as if they are just bouncing from doctor to get the next Rx or get their next fix! As a patient advocate and someone who’s been through the revolving door of doctors nothing upsets me more than to see us being viewed in this way! Why is this happening? Ask anyone suffering from chronic pain and they’ll tell you their desperate for answers and treatment. I think we need to focus more on research for cures and alternate treatments!

As a patient with an illness that has little known about it and no cure in site what are my options? Not many! Sure this is where lots of physicians get stuck, and whip out the prescription pad saying “here try this but I can’t help you any further” leaving the patient with no other choice but to source another physician. I’m lucky enough to have a team of doctors who don’t do this and carefully monitor my medications and try where possible to decrease if they can. They see the need to balance the use of opioids in order to control the pain in conjunction with sourcing other methods of pain control. I’m lucky that for the most part this allows me to function throughout the day!

Taking opioids away from the patient that is suffering from chronic pain and is chronically ill in my opinion will only make “the crisis” worse and cause more patients to become desperate with even fewer choices! Thus leading to higher rates of suicide.  If we can come up with cures and treatments then hopefully chronic pain patients shouldn’t have to rely on these medications as much. Not giving me any voice however doesn’t help to solve the problem. The patient needs to be a part of the overall solution!