The Scars I Proudly Wear


I have spent a lot of time lost in thought as of late.  I’ve finally gotten my mind, body, soul, healthy enough to attempt to push forward in my life.  For the last two years after leaving a ten year marriage I was beyond miserable, sick all the time, and not dealing well with my daily pain.  I even got to the point of considering whether or not it was worth it being on pain meds indefinitely (which is a topic for another blog post).  It was at that point I knew that if I was contemplating my quality of life, there was not much quality of life left to be had.

I decided I needed to change my living situation drastically.  Living alone in my own head 24/7 was precipitating a downward spiral.  Why get up and out of the house for a walk if it hurts?  No one is here to see if I’m being active or not so why do it?  The answer is that I wanted my life back.  I wanted to understand 100% my “new normal” existance.

 

Pain Patients Left out in the Cold


Current Life Status

I am so sorry its been so long since I’ve posted.  I’m going to renew my efforts to post on a regular basis.  However I want to get right to the topic at hand that I wanted to post.

Just like all chronic pain patients in the U.S. I am so scared of loosing access to my quality of life sustaining medication…. Now I want to make sure anyone reading this knows, clearly, my point of view on the “Opiod Epidemic”.  I am glad that POTUS declaring a national emergency will open up previously inaccessible modes of funding for addiction treatment.  It is desperately needed.  HOWEVER…. why is no one, no one, no one, talking about the effect this will have on pain patients???  I just saw on Facebook that a governor in Florida wants to pass a bill making it so patients can only fill opiate scripts for no more than 3 days??!!!  I mean what do they expect us to do?!  The argument, if one is even given, is that patients can use non-pharmacologic pain management techniques.  What!?  Really?!  If that would have worked, because I of course tried, don’t you think I would be using that and only that to help treat my pain?  Well I would!  I actually chose to attempt to come off pain meds approximately 6 months ago.  I stopped pain meds one day and started suboxone the next day with the intent to wean down and off.  After 2 months on the suboxone, and an inability to wean down, I was in excruciating pain.  My quality of life had dwindled to waking up, watching TV on the couch all day in tears, going to bed… is that any way for a 38 year old to live???  Now compare that to how I function now back on pain medicine.  Wake up, make jewelry, journal, read, walk at the park, play with the puppies, and maybe go out with a friend to lunch.  So you tell me… is it a bad thing for me to continue to take long term pain meds when it is clear as day to anyone who knows me just how much they help me.

Check out one of very few articles found online:

https://www.news4jax.com/health/opioid-crisis/patient-worries-opioid-crisis-battle-will-cause-her-more-pain

If you are a pain patient and fear as I do, of losing access to your meds message me.  I’m in contact with several advocacy groups on Facebook.

Atmosphere of Fear for Patients


I have been an outspoken advocate of the issues that fellow pain patients have suffered as of late, given new DEA regulations. The governments attempt to wage war on what is being called the “Heroin Epidemic” has proven to have a huge effect on patients ability to access opiate pain medication. This of course was the intended result in order to limit access by addicts. However the unintended consequences, that have changed lives for the worse, is that of pain management patients being denied access to their legitimate meds. Unfortunately in many cases patients have even been denied treatment outright. This has created an atmosphere of fear. Dr.’s have become afraid to treat patients who may need higher doses in fear of being arrested by the DEA and/or losing their medical license. It’s also made patients afraid to be honest to their providers in fear that they will not be treated. Recently I was pleasantly surprised by the treatment I received during a recent ER and subsequent inpatient stay at a local hospital. I’ve decided to speak out and share this experience as an example of how pain management care CAN and DOES work when patient and provider work together to benefit patient care.

I have been dealing with a disorder called gastroperesis, which can sometimes prevent as intractable vomiting and diarrhea. Unfortunately my need for opiate pain meds have complicated this health issue due to medication side effects which have most likely been slowing down my GI system even more and causing more symptoms. I also freely admit that on occasion when I’ve had pain flare-ups I’ve had difficulty not taking more of my meds on one day or another. This can obviously cause me to experience with-drawl symptoms at times. It has also at times kicked off an episode of my gastroperesis causing me to need hospitalization in order to eat and drink normally again.

Last week after having a bad flare-up of pain (following removal of a trial spine stim) I ended up in with-drawl, which I could also tell was aggravating my gastroperesis symptoms causing me to seek care at my local ER. Before they send me to an inpatient room usually I have to be examined by the inpatient hospital team. Given my high doses of pain meds, and given I couldn’t take oral meds, the team was uncomfortable giving me the equivalent opiate dose via IV access. However it was very clear that I was having GI symptoms in addition to what they suspected was with-drawl. They asked me outright if I knew which I was dealing with, with-drawl or gastroperesis? I knew it wasn’t just with-drawl because once given IV pain meds my with-drawl symptoms would have automatically stop and this was not the case. However, I had to make a hard decision. Do I admit to my inappropriate use of my pain meds and that’s why I’m also experiencing with-drawl or not. I decided to be honest in the hopes the Dr’s would work with me and offer help.

Once I was admitted they decided to give me aprox. 50% of my normal dose of pain meds but give it through IV every 2 hours. I spent 5 days in with-drawl experiencing intractable vomiting and diarrhea most of those 5 days. While in the hospital I was asked to speak with their pain management team and also a psychiatrist in order to determine if I was mentally/emotionally addicted to my meds or was it only physical and just addictive behaviors that could be corrected with help. I decided to take a leap of faith and be totally honest with all the providers. I’m sick and tired of not taking my meds right on occasion and experiencing with-drawl. It’s exhausting. Pain management contacted both my current and past pain Drs.. I agreed with them to keep my dose at 50% of my previous dose as long as they helped with the with-drawl symptoms until I was able to keep down oral pills. The pain management and psych consult resulted in them deciding my issue was more of a physical issue and addictive behaviors that needed to be correct vs. an emotional addiction. Finally after 5 days I was sent home on my now reduced dose of pain meds.

I was required to see my pain Dr. the same day I was released from the hospital. I was soooooo nervous. I mean he had every right to D/C me from his care given I unfortunately violated my pain contract by not taking my meds as prescribed. However I never had a positive urine analysis (which I am given monthly), and even if I was short on meds I never asked for Rx’s early. Given those facts, and that I walked in to that appointment immediately telling him I was ready to answer any and all questions he had honestly no matter the consequences, he gave me a 2nd chance. In the end he was very grateful with how honest I was and gave me congrats on being honest. He knew how hard and scary that had to be for me.

What was his solution? We agreed that when I see him monthly I would receive (4) 1-week scripts dated 1-week apart. That way I’d only have 1-week supply on hand at any given time. So far I’ve been able to stay on my exact prescribed dose despite lingering low-level with-drawl symptoms. I did also experience a big flare-up this week however I used the tools that I know and leaned on friends and family to talk about my pain vs. over-medicating it. I’ve also been good about alternative treatments including mindfulness body-scans and using heat/ice packs.

My story is a great example of how, despite tougher regulations for prescribing opiates, pain management can still work. I know that the reality is not everyone can be honest with his or her providers given the atmosphere of fear. However I do encourage those that may be struggling like I was to ask for help and be honest.

Please be patient with me….


Hello Friends!!!!!

So I just wanted to make a quick post here about my current status regarding getting my blog more easily understood with the right theme and learning how to set everything up.  LOL.  I prob should have done all this self-teaching on setting up a blog BEFORE I started publishing posts lol.  But oh well.  I cannot change the past.

Over the next week I plan on watching and reading a lot of step-by-step instructions on exactly how to accurately set everything up on my blog.  I look forward to getting thins following so I’ll then be much more motivated to post on the regular!

I will be occasionally checking to see if I’ve received any comments on my site.  Or you can reach me more directly at my Email which is: jashley1979@gmail.com

Will hope to hear from you all soon!

Jen

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Thoughts on my Prognosis?


Today’s post is going to be a bit different for two reasons. First I want to work on learning how to set up my blog page/site a bit better with a different theme before I get back to blogging on a more regular basis. The other reason is because I feel very stuck. I’ve learned throughout my illness and the resulting chronic pain from the medical issues I’ve experienced is that I don’t know all the answers about my disorders let alone my life. If you are like me you will read that last sentence and think to yourself you are the most knowledgeable person about your disease given the fact you live it on a daily basis. This is true to some extant. However, I’ve realized there’s a lot I don’t know about my prognosis, how hard I should push my self to continue to reach my life goals , and last but not least is whether it is fair for me to be dating? I’ve started to realize these questions can only be answered by my own self-reflection. However, b/c I know I don’t know everything, I’ve called upon my friends, my doctors, and Facebook friends to share their experience, strength, and hope with me. Now I’m not suggesting that I follow other’s paths verbatim. That would lust be silly!!! I am who I am. That means I need to continue on my path using self-actualization. Maslow and his hierarchy of needs would probably define soul searching as self-actualization. The whole point of this behavior is to develop those answers and understandings I need to gain self insight while also allowing others suggestions and advice to help shape my thoughts into a more solid pattern I can learn to stick with and follow.

Life’s Status Post


Hello to all my readers who have stuck by me despite my randomness in posting.  As you can see I have been starting to make a real effort to either post original posts by me and/or Blog/Press various things/topics that I’ve found on the web that are of interest to me. My hope is that you will follow me in learning more about these topics that affect others just like you.  These topics are things that i hope will interest you enough to start stamping out the stigma attached to pain patients equalling us to active drug addicts. *which is completely not true.  Hopefully these actions that I am taking and that I hope you will start to take will result in various conversations.  Speaking up is the first step as an agent of change.

I’ll give you an example here as to what I was explaining above. Recently I know I’ve pressed a few articles regarding all the current info being spread out there concerning the so called “War on Drugs”.  What is of interest to me is how misinformed many of our media personalities are.  Misinformation is a dangerously powerful thing.  What I mean is that if given the wrong information about the topic of the CDC gouilines regarding Pain Management Opiod prescribing practices, you may not be reaching those patients who are passionate about advocating for patient rights, like I am.  The whole point of getting research and info regarding this topic out to the public, is to try our hardest to change public policy whether or not you’re for or against these new restrictions.

So what can I personally do about patients that maybe don’t know how to advocate for themselves and as a result maybe they’re not receiving appropriate pain management, if any at all.  Given my in-depth experience of working in the healthcare field as a PTA for 10+ years, my current retraining for a bachelors in clinical psychology, and personally being subjected to the pain experience for about 7 years.  I have been treated so horribly by some Dr.’s at the start of my medical illness journey that to this day I have still have some PTSD symptoms.  They present themselves when I get in the car and head to my new/current pain Dr.  There’s no reason for this type of anxiety reaction but it is what I deal with on an ongoing basis.  Because of all these symptoms a couple years ago I started standing up for myself, my rights, and my needs.  Eventually I advocated enough for myself that I’m currently in a very good situation with my pain clinic and my awesome pain Dr. My hope is that through my blog and through my voice on Facebook through various pain groups I can either start to make a difference or at the very least be there for someone who is struggling like I used to.