You Can Help Stop the Reduction of Opiates in 2017

Posted on by Grayson

In case you haven’t heard, the latest tactic to fight the opioid overdose epidemic – and, concurrently, screw us chronic pain patients over – is here! For next year, 2017, the DEA is going to reduce the supply of Schedule II drugs.
Way to go, buttheads.
Chronic pain patients aren’t taking this sitting down, though.
My pal Anita is a badass. Clearly, she and I are trouble together.
Because of her chronic pain illnesses, she has started a petition on Change.org to ask the DEA to reconsider the reduction of the opioid supply. She’s been through a lot but asks that I not necessarily go into details about her life because “I want this to be ours all of ours.”
She goes on to say:

I have been a little aware of this restriction of Opioids for some time. I was sorta scared but also ignored it as I am in the process of applying for disability and that is stressful in itself. It wasn’t until my pain doctor, who I thought I had a great rapport with, said some ableist things and tried to stop my opioid meds all together… As upset as I was, it sorta woke me back up that relying on the system without keeping it in check, the system will always choose their own best interest. Though it was reading the article in the petition [and linked above here] that really just fired me so up that I had to do something. Being that I was an activist by way of physical protest and was used to doing things my body can no longer do, this was the only thing I could think of to do. I hope to at least create some awareness on the issue, get some people fired up and hopefully help people understand we aren’t addicts we just want to be able to live.

So, what can you do?
Sign Anita’s petition. Share it. Put it on Facebook and Twitter and Tumblr and other social media. Email it to your friends and family members.
Help us stop the ridiculous treatment of chronic pain patients here in America.

 

It’s Mental Illness Awareness Week…

Posted on by Grayson
Mental Illness Awareness Week has been around for over 20 years. It’s a week where we are supposed to take time out to examine how the stigma we associate with mental health issues hurts the greater cause of improving mental health.
Instead, we already got to deal with Donald Trump belittling Post Traumatic Stress. On the plus side, we saw Joe Biden get more emotional in his response than we’ve seen in a long while.
Recently, Knott’s Berry farm had an attraction as a part of their Halloween event that helped continue the stigma facing those of us living with mental health issues. They shut it down in the wake of the uproar.
We also continue to see people dealing with mental health issues and other illness issues being killed by police instead of incapacitated.
Yes, this is a week where we should be thinking about these stigmas, but why do we do this for only one week? Why aren’t there more people focusing on this aside from those of us directly affected? Why do people only seem to care when certain events arise and remind them of this stigma?

 

Rheum for Depression #RABlog

Posted on by Grayson

This week, I’m blogging as a part of RA Blog Week. Today’s prompt: coping with depression.
I’m no stranger to talking about how mental health issues interact with my physical health issues. I’ve been very open in talking about my struggles with Post-Traumatic Stress as well. Most of what I’ve talked about, though, is concurrent with but not caused by my rheumatic fun.
Depression, though, is something that I struggle a lot with. It’s gotten a lot better as my physical health improves (and with my antidepressant) but it still lingers from time to time. Depression is also pretty common when you deal with any chronic illness. The isolation we often face as friends and family either leave our lives or share their disbelief about our illnesses increases our chances of depression.
With invisible illnesses, it’s easy to fall into depression. We have these friends and families who don’t believe us. We try to work jobs that won’t accommodate us as much as we need because we aren’t visibly sick. Dating? HA! Healthcare peeps are, often, less caring about some of the invisible illnesses, too.
Throw into the mix how unpredictable our invisible illnesses are and you’re in for a treat.
One day, I can walk a mile. The next, I’m hobbling twenty feet to the bathroom. The day after? I’m sleeping to catch up on the sleep my pain prevented me from getting.
Those things don’t always happen in that order or as mildly as I make it sound.
The truth is that my rheumatic diseases have led to me missing important events in the lives of family and friends. This alone is enough to throw me into dealing with a depressive episode, but then I throw in the potential networking or professional events I’ve missed and it just compounds the frustration I have with my own body.
That’s what it all comes down to, isn’t it? I frustrate myself and do so uncontrollably. I’m unpredictable and unreliable, and not for a lack of trying. My illnesses cause those I love and care about pain, too, whether that’s because of my inability to be consistent or how hurtful it can be to watch someone deal with pain knowing that you’re unable to take it away.
When my illnesses can trigger someone else’s depression? It just causes mine to get worse.
The beauty in all of this is that, by stopping the process of making our body the enemy, we can help to lessen the guilt of living with illness. By halting the viewpoint of our bodies as our enemies in our fight against illness and, instead, embracing what our bodies, minds, and souls need?
That is the epitome of self-care and self-love. That is exactly what we need more of.
But it’s a process – a continuous process. Once you start, stopping just gets you back into the self-deprecation mode we’ve all come to know so well.
Do me a favor. Now that you’ve read this, go do something for you. Eat something decadent, take some medication if it’s time, watch a silly YouTube video, or send Snapchats to your favorite people using silly filters.
 
Have you dealt with depression due to illness? What have you found to help you?

 

The Scoop on Biologics #RABlog

Posted on by Grayson

This week, I’m blogging as a part of RA Blog Week. Today’s subject is the biologic.
When I was first learning about the medications available to treat my Systemic Juvenile Arthritis in 2009 and early 2010, I was horribly frightened. I had been led to believe that all of these side effects were worse than my illnesses themselves and were nearly guaranteed to happen.
This is so far from true that it makes me angry to remember how my mother instilled this fear in me.
In doing my own research on the subject and talking to experts, both in the health care practitioner field and patients, I learned just how helpful biologics can truly be. Sure, there are side effects that can be scary and/or dangerous. Most often, though, the side effects are far less than the benefits you get from these medications.
Still, when I started Humira, I was sure I was going to turn into a hamster the next day. An irrational fear, I know, but a fear still. By the time I started Enbrel, a similar drug, that fear had dissipated. Things went incredibly well with Enbrel… and yet, my body built antibodies to it quickly, rendering it pretty much useless.
Antibody build-up is a very real issue with biologics because the medications aren’t being effective in your body anymore. Sometimes that means that side effects are more prevalent because the benefits go way down.
It can also happen if the drug you’re on isn’t one that actually effectively treats your disease, too. Anti-TNF biologics such as Humira & Enbrel are generally not effective for those of us dealing with SJIA or Still’s Disease as they target different forms of inflammation than are shown to be most active for us.
For that, interleukin (IL) medications are the most effective, such as Actemra, Ilaris, and Kineret. I’m currently on the latter and it has just about put my SJIA into remission. My rheumy and I aren’t 100% calling it that at this point, but I have had normal inflammation levels in my body for 13 months because of it.
It’s something that I’m not sure I remember ever experiencing in my entire life.
That doesn’t mean I don’t have hard SJIA days – I definitely do, but I’m able to manage them more effectively without having to resort to prednisone to get me by. I utilize topicals and additional NSAIDs and my tens unit to push me through.
I have to say, though, that my fibromyalgia has been the biggest problem since about March of this year. That isn’t as easy to deal with, but is also not treated by biologics.
So, hey, biologics can be scary. It’s true… but they can also change our lives beyond anything we could imagine. It’s worth the risk to get the potential payoff.
 
What has your experience been with biologics?

 

My Journey to ePatient #RABlog

Posted on by Grayson

This week, I’m participating in RA Blog Week. Today’s topic: how I became an engaged patient.
Yesterday, I talked about my origin story but stopped short of talking about how I became an engaged patient… complete with amazingly old pictures I took on my first laptop (and one from T).
Back when I started this blog, I hadn’t seen a doctor in 13 years. That changed in early 2010 as I got a referral to a rheumatologist and was able to finally get some damn medical care… No thanks to my mother.
I grew up abused and neglected, meaning that medical care for my Systemic Juvenile Arthritis – something integral to my well-being – was not a thing. When I got back into medical care via school nurses in college, they legit told me that I knew my body better than they would and that they couldn’t really help me with anything.
I felt like I was drowning in pain.
I came home and cried while sitting in a bathtub in my dorm apartment trying to ease my pain and calm down – and then made the appointment to get to a rheumy 5-6 months later.
After getting back into medical care, it was clear that many health care peeps that I saw didn’t know about my illness. It was hard to be my own advocate while being a young woman dealing with pain. People didn’t believe me about my pain or on my illnesses. In order to get the right care, I had to become an expert on my illnesses, on the medical experience, and on communicating with health care practitioners.
I had to learn to start questioning the system.
I began to add medical stuff into my life, on top of school textbooks, essays, and working multiple jobs. I moved and got a new health care team.
It was a lot to take on, but the transformation wasn’t complete until I was forced to quit graduate school. I had to step it up, and I did.
I spent hours sifting through academic medical journals, medical textbooks, and contacting some of the experts on my illnesses. I began to get more patients asking me questions and writing pieces I wish I had had early on in my lonely journey – especially those about insurance terms and the like.
And it’s just continued from there.
It’s been quite an interesting journey to go from a college sophomore trying to learn about my illness in order to explain it to the hubby to turning into a patient expert. I wonder what 20-year-old me here would say about that.
What about you? What has your patient journey been like?

 

My Origin Story #RABlog

Posted on by Grayson

This week, I’ll be participating in RA Blog Week. Today’s prompt:
 
Tell us about your diagnosis, what were you thinking, feeling or when did you first know something was wrong?
I was so young when diagnosed with my Systemic Juvenile Arthritis (SJIA) that some of the fun details aren’t always things I remember.
I was five when I got sick. I remember feeling incredibly sick. I went from being happy and bubbly to tired and fatigued. I ached all the time. Sometimes it hurt to walk or to move my hands. I had rash all over and it itched something fierce. I could barely get any sleep and, when I did, it wasn’t restorative; I kept scratching my rash and trying to get relief in my aching joints.
All I knew was that something wasn’t right. I was still forming my ideas of normal and not-normal, but I figured that this wasn’t right.
Then came doctor appointment after doctor appointment… and misdiagnosis after misdiagnosis.
The last misdiagnosis was leukemia and I was given weeks to live shortly before my sixth birthday. I was incredibly ill.
Frankly, I think that I was going through Macrophage Activation Syndrome (MAS) as many with SJIA do during the initial disease onset phase. MAS can be deadly and, to be honest, I’m incredibly lucky to be alive.
Shortly after my sixth birthday, SJIA was found as the culprit. It was a relief to know I didn’t have leukemia BUT it was scary to have a rare disease that even my doctors didn’t know about.
Shortly thereafter, I was medically neglected by my mother and wound up not getting treatment, aside from over-the-counter Aleve, from ages 7 to 21.
I was 8ish here and sis was 4ish
At one point, I just assumed that all kids went through pain, that I was just weak and couldn’t handle it. After all, mother made a point of talking about how she went through similar as a child. Who knows if she was telling the truth in the end, as she’s a pathological liar, but it didn’t help how I processed things.
When I was diagnosed, the idea was that SJIA kiddos would be in a wheelchair by age eight. I was incredibly scared about it. I thought, because no one had talked to me in an adult way about it, that I was going to wake up on my eighth birthday and magically need a wheelchair. My legs would just stop working.
Thus began my lifelong battle with anxiety, too.
What’s your origin story?

 

Ten things I LOVE about me! #pam16

Posted on by Grayson

Self-love isn’t always an easy thing. Even more, it isn’t easy to share that stuff with others. With Pain Awareness Month going on, it’s even more important to share these things in order to help each other deal with our illnesses – in order to help us all improve how we look at loving ourselves.
So here, in no particular order, are the ten things I love about myself:
  1. My willingness to embrace new ideas.
  2. My compassionate heart.
  3. My fighting spirit.
  4. My love for animals.
  5. My sense of humor.
  6. My blunt, truth-telling nature.
  7. My cooking skills.
  8. My eyes.
  9. My vulnerability.
  10. My love of learning.
What are some things you love about yourself?

 

 

Off to Cali!

Posted on by Grayson

I am SO excited (and hella nervous) to head back to MedX this year.
See, I’m presenting on Chronic Sex for the Health Care Innovation day AKA talking to patients, healthcare providers, medical system reps, insurance reps, and venture capitalists… AKA I may vomit. This is a huge opportunity for me to get news about Chronic Sex out there in addition to potentially securing some funding.
After MedX, I get to visit my sister and the kiddos. I’m excited to spend time with them and play with them. I also get to visit some close friends that I haven’t met in person before, which is going to be amazing!
Then I’m off to Los Angeles for the For Grace: 9th Annual Women in Pain Conference on “Pain Takes a Vacation: Actions and Strategies that Get Us Away.”
You can live-stream both so make sue to check into it!
I’ll be away for the next two weeks ish. Take care of you!

 

September #SelfCareChallenge

Posted on by Grayson

It’s no secret that I have a love of self-care talk. It’s been a while since I talked a lot about it here just because I’ve been busy, haha.
And trying to get better at self-care while busy.
One of my favorite things to do is to be incredibly nerdy and adorable, as illustrated by this picture of me hanging out with Alex Kingston and David Tennant. Obviously, um, I don’t do this often, but it was a big self-care thing meeting them and speaking with them.
David said my name later in the day when I snagged his autograph – and said it correctly in his beautiful Scottish accent. I told him how the version of Hamlet starring him and Patrick Stewart is my favorite.
Sigh.
It was a great day.
When I feel crummy or like I haven’t accomplished much in my life, I remind myself of conversations and cool things like that. It reminds me that I’m cooler than I think.
Why do I bring all this up? Because my pals over at Self Care Movement are having a September #SelfCareChallenge! If you’d like to participate:
 
Post a photo of yourself doing something that boosts self-care (eating clean, exercising, spending time with family, whatever makes you feel good), tag #selfcaremvmt and nominate a friend to help us build a strong self-care movement!
You can follow the Self Care Movement on Facebook, Twitter, and Instagram.