“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!

Chronic Illness And Narcotics

Today’s post is one that I have spoken about in the past but will speak towards it again because of its importance. Without the complex cocktail of prescription drugs or opioids, I couldn’t imagine how much worse my pain would be. With my diagnosis of CRPS there is NO CURE! There are few treatments at this time but the most effective in giving me quality of life is a combination  stimulator/opioid treatment plan. There is one other called a Ketamine Infusion much like a chemo treatment which some people find successful in reducing the pain they suffer from. Without these pain management plans quality of life is reduced! My treatment plan is a drug plan that’s administered very carefully and watched by a team of people being checked monthly if not more!

So why am I going on about my drug treatment plan? The reason quite simply is that some people want to refer to those of us who are chronically ill as addicts. There’s this stereotype that comes with being chronically ill, and everywhere you go it follows you. Most recently during a Super Bowl commercial https://www.youtube.com/watch?v=X276jp-vvRY and comments made by comedian Bill Maher! I can’t and won’t try to tell you how many times that people have made this reference to those of us who are sick. If you want to read his comments I’ll leave you to search for them on Twitter. My illness has no cure! Am I suppose to stop living life just because of that! The medications help me with basic daily functions and if they are managed well can be a benefit and not a detriment to the quality of my daily life. Unless there’s a cure then this is my only form of for treatment.

The stigma out there is that we as sufferers of chronic illness abuse the drugs we take or have become addicts. This perception I think is caused in large because you will often see us changing drugs or taking combinations to see what works best to relieve our pain. We often take large dosages because that is what it takes to control the pain. Instead however too often we are looked at as someone who abuses. Some combinations just don’t work with CRPS pain, and so doctors will change drugs to see if something else will work to give us some relief. Changing medications will often cause others to think we are hopping from drug to drug. I shouldn’t have to make excuses for taking medications that I need to reduce my pain! So I challenge all of those out there who have this perception to really look into why we take the medications that we do. Don’t be so quick to label me because I guarantee you that if we had a choice, we wouldn’t want to be taking any of these medications at all!

With the proper use of my medications it allows for me to be a voice and to advocate for a cure to CRPS through this blog and other avenues. If I wasn’t controlling my pain through opioids then I wouldn’t be able to advocate for my chronic illness like I do. Its time to stop lumping us into the category of abusers and see us for what we really are. Some of my fellow advocates are doing amazing things to raise awareness, and providing other sufferers of chronic illness with support and so much more. Without their specific drug treatment plans those things wouldn’t be possible. Yes I’m chronically ill and its bad enough that I have to live with this debilitating disease called CRPS but I won’t be called things like a junkie, abuser, or addict when I have no other choices for treatment! I’m doing the best that I can do and it wasn’t my choice to become ill. So having to apologize for the treatment that helps me to be an active member of society is just adding salt to the wound. Please help to stop the stigma that has been built up around us! More importantly help us find the cures!