Friday, September 30, 2016

Join me for #CreakyChats Monday 10-3 at 6 pm Eastern

What are you up to on Monday? Come join me and my pals at Creaky Joints for #CreakyChats over on Twitter! We will be talking about what we wish the world knew about chronic disease.

picture advertising creaky chats with kirsten and creaky joints on Monday october 3 at 6 pm eastern time on the topic of 'what we wish the world knew about chronic disease'

Hope we see you there!





Thursday, September 29, 2016

Rheum for Depression #RABlog


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?





Wednesday, September 28, 2016

The Scoop on Biologics #RABlog


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?





Tuesday, September 27, 2016

My Journey to ePatient #RABlog


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?






Monday, September 26, 2016

My Origin Story #RABlog


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?





Tuesday, September 20, 2016

Ten things I LOVE about me! #pam16


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?






Tuesday, September 13, 2016

Off to Cali!


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!






Sunday, September 11, 2016

September #SelfCareChallenge


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.





Saturday, September 10, 2016

Fibro-versary


Welp, today is the day (four years ago) I was diagnosed with fibromyalgia.

It took me breaking down in my old rheumy's office to get anywhere with this diagnosis. I had been complaining for months about classic fibro pains AND the rheumy I had before this apparently putting in his notes that he thought I had fibro... without telling me. Then I finally went in crying because I knew I either had fibro or Multiple Sclerosis (which I watched my great grandmother suffer from). 

I begged for whatever tests were needed to get me the truth so I stopped crying myself to sleep at night and debating getting into car accidents in order to get some pain relief at some point.

It's been a long road. 

(source)
I have to say that it's interesting to really notice how much of a butthead my fibro is now that my SJIA is more under control. I don't know that we really ever have had my fibro under control. I started getting trigger point injections (post coming soon-ish I hope) and will soon be starting acupuncture to deal with my neck/shoulder/back pain. I am already experiencing great pain relief and am ecstatic to see what happens in the future.

So, um, happy birthday fibro... you butthead.





Thursday, September 8, 2016

My 5 Favorite Phone Apps


As a blogger, health activist, and my own boss, I've been through a lot of apps on my phone over the years. Not too many actually stay on my phone, or, if they do, stay relevant and frequently used. Needless to say, when an app stays and stays relevant to my life? It's a big deal.



It's probably no secret to those of you who follow my blog that Buddhify was going to make it onto this list. There are over 80 tracks culminating in over eleven hours of meditation. There are also timers for those of you who are down with meditating sans guided tracks. 

One of my favorite things is that there is a 'pain and illness' section. I have found the most amazing help via this app when it comes to dealing with my post-traumatic stress, anxiety, and physical illnesses, too.

Available via App Store and Google Play. You can also listen to some tracks via SoundCloud.



This personal assistant app has earned accolades from CNN, Yahoo!, Forbes, and was named to Apple's App Store Best of 2014. 24me is amazing. It doesn't just have a calendar, but to-do lists and notes. Plus, you can add in your own photos to rotate at the bottom of the calendar, which is always fun.

The other part that I love? It'll remind me when I have some free time to accomplish some of the things on my to-do list. When I worked my day job, I didn't find this useful as my time at work wasn't necessarily 'free time,' if you know what I mean. Working for myself, though? YES.

Available via App Store and Google Play.



What if a millennial with a love of gifs designed a weather app? It would be Poncho.

Alerts have gifs incorporated into them as well as hilarious scenarios or sayings while also giving you the weather. I don't even know how to say that it's cool in words. All I can say is that it keeps me prepared when I'm traveling - especially as it's in my pull-down on my iPhone like my notifications are.

Available via App Store and Google Play. You can even get updates, though, via email or text. Currently, they only cover the continental United States, though. If you sign up online here, you can easily set your settings AND help me score a pair of sunglasses.



Boxed is an easy way to order items in bulk that ship directly to your home. You don't pay any membership fees and get free shipping with orders over $75. Don't worry about doing the math, though - Boxed keeps a running total at the top of the app with how close you are to free shipping. And your first order? Free shipping, no matter the cost.

Everything ships within a business day which means little waiting! You also get 1% in cash rewards for each purchase.

They have everything from things for pets to cleaning supplies to home office stuff to grocery and drinks. I've really enjoyed how easy it is to order from the app in addition to simply taking things upstairs instead of having to go shopping and then lug it all up.

Boxed is a time and spoon saver, for sure.

Available via App Store and Google Play, but will only work in the lower 48 states.



Camscanner is exactly what it sounds like - a scanner for your phone that utilizes the phone's camera.

It is vital to the resources I pull and research I do because, let's face it, writing notes with arthritis sucks. 

Really, really badly.

With Camscanner? I just have to scan books in to read later, whiteboards for perfect notes, or photos that are from ye olden days of no digital files.

Available via App Store and Google Play.

These apps, save Boxed (which is newer to me), have all been with me whether I've had an Android or iPhone. They work extremely well. The ones that require payment are ones I would gladly pay 100 times over for. Every single one of these apps is integral to my life as a chronic babe who runs my own businesses and travels a lot. I couldn't imagine my life without them again.

What are YOUR favorite apps?






Tuesday, September 6, 2016

My Anti-bucket List


A lot of times we talk about our lives in things we want to do or wish to accomplish. Sometimes, I find it easier to think of the things I wish never to repeat or endure at all. Some of these are things very few of us have to worry about and others are silly, but they're all a part of my list.

Talk to or see my mother or my other abusers again.
I don't need that shit in my life, y'all.

Be in a plane crash.
My grandpa died in one with his Cessna. I just imagine it would be the scariest.

Shoot an animal.
Just nope.

Be responsible for the death of another, even indirectly.
I hate if I hurt a mosquito biting me to try to feed her babies. I hate when I run over a frog I couldn't see. I don't like to hurt anything because I value all lives, all souls.

Hurt or a
bandon those I love.
It's a running thing in my Family of Origin. I aim not to do it.

Go to Burning Man.
 
There are way too many people there.

Run a marathon.
 
LOLOLOLOLOLOL

Do a cleanse. 
Those things honestly are really bad for our bodies

Get back with an ex, even as friends.
I've dated some pretty awful people.

Give people too many chances to hurt me.
Been there, done that.
I will always fight for others while pointing out how race, poverty, ableism, patriarchal society, societal standards, etc, harm us all

Stop caring about my fellow patients, no matter their illness.
See above. It's not fair for movements like #PatientsNotAddicts to keep demonizing our fellow patients.

Apologizing for being me.
I'm a rebel. It's how I'm meant to be. In most aspects of my life, that tends to be a good thing. I refuse to hide it or cover it up just to help others feel more comfortable. Not everyone likes a rebel, especially one who tells it like it is. I'm not here for everyone to like me.


What are some of your anti-bucket list items?





Friday, September 2, 2016

10 Arthritis Myths and the Facts to Dispute Them


Let's explore the wonderful world of myths and misconceptions about 'arthritis.'

1. Arthritis is for old people.
2. Arthritis is just wear-and-tear.
3. All arthritis is the same.

I thought it best to address the top three here together since they're so interrelated.

Often, people think of osteoarthritis (degenerative/wear-and-tear arthritis) or osteoporosis (porous bone/low-bone-density) when they hear 'arthritis.' This is a misconception.

'Arthritis' is actually an umbrella term for illnesses in which 'arthritis' or inflammation/stiffness in joints is a symptom. What diseases fall under the arthritis umbrella? Lupus, Rheumatoid Arthritis, Juvenile Arthritis, Ankylosing Spondylitis, Bursitis, Chronic Fatigue Syndrome, Gout, Fibromyalgia, Psoriatic Arthritis, Vasculitis, and more.

These types of arthritis can hit anyone, from infants to the super-old.

4. Arthritis is easy to diagnose.

Wear-and-tear arthritis can be easy to diagnose, but many other types - Rheumatoid Arthritis, Lupus, Juvenile Arthritis, etc - are not. There is no one test that fully confirms which type of arthritis a person has. Some tests may indicate whether or not you're heading in the right direction, such as a positive ANA may indicate Lupus, but isn't a for-sure thing.

These diagnoses are made by exclusion and symptoms.

5. Yoga cures arthritis.

NOPE.

While physical activity can be very helpful for types of arthritis, it isn't always the easiest thing to undertake. I have actually been banned by my rheumatologist from doing yoga before due to how detrimental it would've been on my health at the time.

We patients, in conjunction with our doctors, know what is best for our bodies. Please don't recommend types of physical activity to patients unless we ask for your input.

6. Rum-soaked raisins cure arthritis.

ALSO NOPE.

There are NO CURES for ANY TYPE of arthritis. Just no.

Again, we patients, in conjunction with our doctors, know what is best for our bodies. Please don't recommend 'cures' to patients. EVER.

7. Arthritis is a minor inconvenience.

Arthritis causes excruciating pain that cannot be expressed with words. Aleve doesn't do it to kill the pain - oftentimes even opiates only minimize the pain enough for people to be kinda functional.

On a good day, my pain sits on a 3-4 on the pain scale. On a bad day, I jump up to 7-9... mostly because I am reserving my 10 for whatever will wind up being my stubborn butt's first hospital stay. When I hit those bad days - and that is at least half of the week - I cannot focus on anything. If I absolutely have to accomplish things, they're done with less attention and care than they would be on a better day.

8. Treatments halt damage and pain.

Even people in remission (no active signs of their disease - this is not the same thing as a cure) still have pain from their illnesses. Treatments or no treatments, there is still pain.

9. Damage only happens when there's pain.

Pain isn't an indicator of damage. Damage can happen whether or not pain is an issue. This is why it's so important to be on medications to treat arthritis types, no matter your pain levels, unless your care team believes you are in remission.

10. It's not like arthritis ever killed anyone.

Um, it has. So many people, including children

I mean, the reality is that the medications we take have side effects - not all of which have truly been studied yet - and, thus, effects ripple through various parts of our lives. The disease itself causes major issues that, again, aren't fully understood by healthcare providers yet.

We live in pain every single day in a society that doesn't get us, leading to depression and higher rates of suicide in the general chronic illness community, too. This is important to remember as we look to revamping mental health care in the United States (I hope).

These are just my top 10. What would YOU add?





Thursday, September 1, 2016

September is Pain Awareness Month #PAM16


There is irony in the timing of my writing this in my non-flattering state you see above. 

It's currently Wednesday, August 31, close to 9 pm Central Time. I was fine all day - really productive and got some self-love stuff done even. I made the mistake of having a full glass of milk around 4:30 pm... then around 7:30 pm, my pain went straight from a 2 to a 7. Extra medications, my tens unit, and ice barely brought it down at all.

Oh, the pain.

Well, September is Pain Awareness Month! It was started in 2001 with the help of a number of organizations coming together. You can learn more about the history via this PDF.

According to Johns Hopkins, 100 million Americans deal with chronic pain... my guess is the real number is slightly higher than that since the CDC states that 117 million Americans as of 2012 had some sort of chronic illness or disability. You can find some additional facts, though they're from 2007, over at Health Central.

What can you do to raise awareness or help?

Learn more about and share People with Pain Matter, a new initiative from the US Pain Foundation (I shared them on Medium).


Share your story, whether it's one blog post or a daily account on social media. Make sure to use the tags: #PAM16 #PainAwarenessMonth #USPain #IAmAPainWarrior (Optional: #30DayChallenge #PeopleWithPainMatter). Make sure you're not being ableist and utilizing tags like #PatientsNotAddicts though. That just hurts other patients with genetic predispositions, trauma, and other pain. Addicts are still humans - and still patients. Don't be a jerk.

If you're going to tweet/post/IG your pain, check out the 30 Day Challenge for themes and ideas. The US Pain Foundation Facebook page also has a ton of information and will have a lot of new stuff going up this month.

Speak out against organizations that try to trademark and profit off of our pain by eliminating other organizations they don't like with said trademark. (Confused? Catch up here.)


You can add a Twibbon to your Facebook or Twitter profile photo, like I've done above, here.

Remember that it's also Animal Pain Awareness Month so if you have a spoonie pet, share their story, too!

And, please, be kind to yourself this month regarding your pain. It's okay to do less or to say no to things in order to take care of you. I love you and you need to be safe.