Wednesday, December 30, 2015


Apparently my brain decided to process some of my triggers via social media.

If you're ever interested in what living with Post-Traumatic Stress Disorder is like, just head on over to Twitter and check out #kgetstriggered (or click here).

You can also read more below:

Tuesday, December 29, 2015

Terminology Tuesday: CRPS

CRPS stands for Complex Regional Pain Syndrome. This syndrome can be caused by trauma or injury to a part of the body, resulting in nerve and other chronic pain. It's an interesting syndrome in that there are people without a documented injury to the affected part of the body that are diagnosed. CRPS can affect the immune system, blood vessels and flow, and other parts of the nervous system.

Other symptoms include allodynia, changes to the skin surrounding the affected area, stiffness, and tremors.

Since some of these symptoms mirror rheumatic diseases, there is a lot of exclusionary testing with this diagnosis.

Treatment varies significantly from case to case. Steroids and NSAIDs can help, or nerve medications like Lyrica may need to be used. There are more severe methods of treating this disease as well including surgery, nerve blocks, and more.


Monday, December 28, 2015

Medical Mondays: coinsurance, copay, and other confusing insurance technobabble

With the new insurance year almost in full swing, let's review some important insurance terminology.

Coinsurance and copayment - what in the world is the difference?

Okay, so a copayment is a portion of money you have to pay your doctors, etc, for services rendered or to your pharmacy for a prescription. Copays are generally a fixed rate - for example, Lyrica through my current pharmacy is $20 a month.

Copays also usually go away if you hit the out-of-pocket maximum for your plan. If you had an MRI in early January last year like me, that means you hit the maximum pretty quick and got to enjoy appointments without having to pay much in the rest of the year.

That came in handy with bronchitis and other BS, I tell you what
Bear with me, because coinsurance is not so straight forward.

The coinsurance is an extra amount you owe, which is generally the balance of your total medical bill once your insurance pays their part - regardless of whether or not you paid a copayment.

And then, there's your deductible... which is basically the amount of money you have to pay before insurance will cover anything.

Copayments don't count towards that amount because that would assume that the insurance is picking up any part of the tab.

If you're chronically ill like me and end up having to see various providers a lot, you'll likely want an insurance plan with a lower deductible because it'll save you money up front.


Tuesday, December 22, 2015

Terminology Tuesday: TRAPS

TRAPS stands for Tumor-necrosis-factor Receptor-Associated Periodic Fever Syndrome. It is in the Periodic Fever Syndrome family, which is also where Systemic JIA has been placed lately.

The syndrome is an inherited one due to a malfunction to the TNF protein.

Since the symptoms of TRAPS generally fall within the rheumatology realm, a rheumatologist is generally who primarily treats the syndrome. Symptoms can include muscle and joint pain, fevers, rashes, uveitis, stomach upset and GI issues, and more. It can take a long time to get a diagnosis with TRAPS, sometimes up to and over ten years.

Medications like Enbrel and Humira can be effective, but Kineret and other interleukin-based medications have been seen to be more effective lately.

If you or someone you know has TRAPS, making sure to get the proper treatment is key as it can easily affect your kidneys and cause chronic kidney disease.


Thursday, December 17, 2015

Therapeutic Thursday: link round-up

With it being the holidays, mental illness issues are brought to the forefront as we end up having to be more social while handling gross weather and a lack of sunshine.

Buzzfeed recently had a series of posts on mental health issues, and I wanted to share them with you.

31 Books That Will Help You Better Understand Mental Illness And Disorders

We Asked People On The Street If It’s Okay To Talk About Depression

This Is What It Feels Like To Live With A Mental Disorder

13 Awkward Moments When You Have Depression And Anxiety

11 Things People With Anxiety Want You To Know

This Is The Difference Between People With Social Anxiety And Without

29 Things No One Ever Tells You About Being In Therapy

22 Coloring Books That Will Calm You The Heck Down

My Childhood Sexual Assault, My PTSD, My Journey Back To Happiness

13 Powerful Stories About College Students Living With Depression

15 Easy Things You Can Do That Will Help When You Feel Like Shit

A Woman Explains Her Struggle With Mental Illness Using The Pills She Was Prescribed

11 Honest Motivational Posters For People Living With Depression

18 Ways You Can Help A Loved One Going Through A Hard Time

31 Important Mental Health Tips You Should Try Right Now

What Your Doctor Is Looking For When Diagnosing Mental Illness

What You Say To Someone With Depression And What They Hear

These People Shared What Their PTSD Really Looks Like

What Panic Attacks Feel Like

Running Helped Me Cope With Depression, But Then I Got Injured

14 Apps To Help You Manage Your Anxiety

Treat Yourself To This Compliment Generator

Wednesday, December 16, 2015

ePharma Summit 2016

I'm really excited to get to share with you that I will be a guest blogger for the ePharma Summit 2016 in the big apple!

There are going to be some amazing speakers, including great people I'm lucky to know like ePatient Alicia Staley and Joseph Kim of Eli Lilly and Company.

And I'll get to spend some time with my sister in law and other great people I know in the area.

The Summit is all about topics like:
• Digital Health;
• Healthcare Marketing and Advertising;
• mHealth;
• TeleHealth/ Medical Automation;
• Content Marketing and Storytelling;
• Patient Engagement & Empowerment;
• Innovations in Healthcare Technologies;
• Healthcare through Data and Analytics;
• Pharma and Social Media;
• HCP's in the Digital Age

And so much more.

So, from now through the beginning of March, come check out the ePharma blog where I'll be putting up some pieces.

Oh, and if you're in the NYC area and would like to hang out a bit, let me know!

First semester of grad school done!

I turned in my final paper for my HR class last night.

Current mood:

Nah, but really, I'm in such a better place than my first go at grad school. I don't think it helped that I was trying to learn a very hard language on top of it all either. I loved Arabic, but also don't mind not having to work on it right now.

And being on a medication that actually works for me instead of methotrexate with all the problems it caused is really helping too.

My writing will pick up here a bit as I have about a month or so off from school.

Monday, December 14, 2015

Medical Monday: Medication Tips

Before we dive into more medication tips, make sure you've entered this contest for a pill organizer (it ends tomorrow!) and have checked out the tips I have for managing your medications.

Some of the medications that we have to take aren't pleasant, from infusions to shots to nasty tasting pills.

I'm looking at you, prednisone.

Here are some of the tips I've acquired over the years regarding medications.

1. Don't try to take all the pills at once.

Oh, it seems like fun when you get it right, throwing the eight pills you take in the morning in your mouth in one go.

When it doesn't work, though, you can actually choke.

Personal experience.

Please don't.

2. Do consider taking pills with not water.

Some pills are easy to get stuck in our mouths. Drinking something slightly more viscous than water like moo juice can really help.

3. Prednisone should basically be taken with yogurt.

I've been on pred enough to know how nasty it tastes when it gets stuck in your mouth or throat, which it almost always seems to do.

Taking prednisone pills inside yogurt will help eliminate that while giving enough viscosity that the pills don't get stuck.

4. Ice your tumtum while letting a refrigerated injection warm up...

So hey, let's talk biologics.

When they're cold, it hurts like all get out to inject them, so most docs recommend letting the injection sit out around 15 minutes to warm up.

This gives you perfect timing to gently ice the injection spot beforehand which will help lower the pain from the needle going in.

5. And ice right after you inject.

Injections hurt. Your body is already pretty full of body stuff, so piercing the skin and adding more goop isn't always comfortable.

If you ice for a few minutes post-injection, it can help with any bruising AND pain.

6. Just rest during infusions.

Many have great ideas for being productive during infusions, bringing work or homework with them.

A lot of that anticipated productivity goes out the window, though.

Infusions suck. They make you tired, even if they're just saline.

Please just rest. Bring a blanket and your laptop so you can watch Netflix and chill.

I love Calming Manatee
7. Take a deep breath.

It can be really easy, especially when starting a new medication, to be very worried and anxious. While it's important to watch for potential side effects, it's also important to try not to freak out too much.

Yes, I do realize the hypocrisy in my saying that.

I thought Enbrel or Humira were going to turn me into a hamster... and there's a video on my youtube channel of me basically having a panic attack pre- and post-injection.

Try to do some meditation beforehand.

Take a shower.

Do whatever calms you, and remember that you're not alone.

Saturday, December 12, 2015

Advocacy is hard

This is not how it looks for reals in engaged patient land.

It's time to be real here.

Advocacy is hard, whether for yourself or for others.

I love it, and I'll always do it, but that doesn't mean it's easy to share so much of myself.

Many of us who are advocates deal with a lot of extra fun stuff that others don't always see.

You don't see me waking up at 2 am sick to my stomach and trying to get back to sleep.

I don't always talk about how I can't eat much at all.

You don't see how difficult it can be when we have super negative comments directed at us, even those that are well-meaning.

You don't see us scream-crying Broadway tunes in the shower because we didn't get to participate in something we love.

We can't do everything either. That's hard, both for us and for others, to understand and fully grasp sometimes.

And, to be honest, this is rarely a paid venture. I do so much on top of going to graduate school and working full time, on top of having a family that so needs me, on top of my appointments and home exercises.

The doc I work most closely with says I have upwards of six jobs and, truly, she's right.

I wouldn't change being an advocate for anything in the world.

Just know that it isn't easy for any of us, and remember that when you go to make negative and hurtful comments. And that you have a place to share anonymously if needed.

Thursday, December 10, 2015

Three years on: Life without Laura

You, I miss
I can't believe that it's been three years since Laura passed away.

Three years?

The hurt is lessening.

I almost wish it wasn't.

It makes me wonder at what point I'll forget to make a cake for you birthday or think thoughts of you today.

It seems like it has been much longer than three years. It's amazing how many things have happened in the interim.

Your death pushed me into advocacy in a way I couldn't have been involved before.

In losing you, though, I became so lost, so angry.

It's not fair that you were taken. It's not fair that a mistake from a hospital cost you your life.

I know that you're around me much more than I think at times, but I also feel that subsiding. Maybe it's that I don't need to rely on you as much, or maybe it's that others need you more.

Whatever the case, I miss you. So much more than words can express.

Wednesday, December 9, 2015

When sharing about your abuse isn't well-received

Recently I've shared some more about my mother from my personal facebook page only to get backlash from people who should be supportive.

I was really taken back by some of it. It's the classic BS on 'but she's your mother' and 'it's not healthy for you to be angry' and such.

Part of why it was shocking was that no one has been anything but supportive up until now - a year and a half later.

I guess I thought I was passed that, that I had been lucky enough to not have assholes try to act like they have any idea of what my upbringing was like - or how it continues to affect me.

My mother is, essentially, a female version of Donald Trump. She's racist, sexist, and a rude bigot. JK Rowling would probably not like her

"But she's your mother!"

And? That magically is supposed to erase everything?

The above is what you're supposed to do if your child tells you they've been abused sexually.

Guess what did not happen for me?

Growing up, we were told she would kill anyone who hurt us, not try to make babies with them.

Not only did she continue to sleep with a married man after finding out that he was married (to someone chronically ill which was his reasoning for cheating & she agreed with it), but she continued to sleep with him even after he sexually assaulted me and I had told her. 

That night, they had sex next to me in a king sized hotel bed where all three of us were "sleeping." I wasn't asleep, but apparently that wasn't obvious? When she was asleep, he attacked me. 

She defended her decision to not believe me for a long time because the bruises had gone and she saw no evidence, despite him always making sexually explicit jokes to her 13-year-old daughter. I was forced to spend time with him even though she promised I wouldn't have to - until one point where Kelsey witnessed him attempting to assault me again. Even then, Michelle stayed in a relationship and continued having sex with this man - leaving us and taking a week of vacation here or there to travel with him on a whim, while we were in incredible pain from medical and dental issues that were never addressed. She even defended him because apparently he got to sleep with the young girls who would've been about my age back in India before they got married, and guess what age I was?

After they separated, she continued to bring him up even though I asked her not to - even though it was very obvious that this was triggering me from me crying and having mini-breakdowns. She even did this right after my niece was born, leaving me to drive an hour home with the icky thoughts of being sexually assaulted instead of the wonders of the sweet baby I just held in my hands. 
Sometimes that assault creeps back into my head - when I'm sleeping, at work, being intimate with my husband.

THAT is unforgivable in and of itself.

And yet, it's not the only - or even, sadly - most major issue.

She beat my sister, day in and day out, for years. If she forgot, her mother was there to pick up the slack. At the very least, they emotionally abused her - and still continue to do so frankly.

She refused to get dental, medical, and emotional help for my sister and me, despite us having illnesses that could easily kill us.

The anger I have? It keeps me safe. It reminds me of all the above, and how I deal with a large amount of it.

It reminds me of the things she did to us and didn't do for us.

It reminds me that we deserved better, to treat myself better NOW.

It reminds me that I'm safe, something so integral to someone living with post-traumatic stress disorder like myself (SIDE NOTE: want to know what it's like to be triggered?).

But, I mean, hey...

If you're a proponent of parents assisting those who sexually assault their children in getting away scot-free, then defend my mother.

If you love child abuse and all the hurt it continues to cause until the day that child dies and after that even for families, then defend my mother.

And by all means, if you would enjoy paying for my sister and my dental and doctor bills or estimates (now in the $100,000s to get 'fixed'), then defend my mother and send me a check.

If you think I made a shitty ass decision, knowing that you know basically nothing about how I was raised? 

Keep it to your damn self.

Wacky Wednesday: random link edition!

Sometimes we just need a silly collection of links.

Like today!

19 Extremely Useful Gifts For People Who Need to Get Their Shit Together

41 Remarkable Behind-The-Scenes “Harry Potter” Film Facts To Keep The Magic Alive

17 Female Friendship Truths, As Told By Amy Poehler And Tina Fey

Sweary Colouring Book

Todrick Hall Revives The Sanderson Sisters In Perfect “Hocus Pocus” Parody

SNL reveals Star Wars: The Force Awakens auditions from Jon Hamm, Emma Stone & more

This Hilarious Parody Makes Fun of Batman's Silly Combat Style

18 Gordon Ramsay Insults All Servers Really Fucking Need

Mean Tweets With Neil Degrasse Tyson: Movies Edition

8 things you didn’t know about Charles Schulz and ‘Peanuts’

20 Amazing Dog Tricks By a Guinea Pig!

“Something Terrible Has Happened Here”: The Crazy Story Of How “Clue” Went From Forgotten Flop To Cult Triumph

Alanis Morissette Updated The “Ironic” Lyrics With Modern Struggles And It’s Hilarious

17 Animal Memes That Will Make Every Pun-Lover’s Day

Deck Your Walls With Steampunk Rock Star Scientist Posters

If DJ Khaled’s Snapchat Captions Were Motivational Posters

The Best Boops Of 2015

Bandai Mugen Puti Puti Bubble Pop Keychain

19 Dogs Who Are So Gigantic You Won’t Believe They Are Real

These Are The Coolest Products From 2015

Kenan Thompson And Kel Mitchell Reunited On “The Tonight Show” And Our ’90s Dreams Came True

17 Reasons Tina Belcher Is The Best Role Model For Young Girls

Tuesday, December 8, 2015

Terminology Tuesday: ICD

You may hear from your physicians or see on your chart a very odd number series next to your diagnosis.

For example, in August I altered the original picture here to add 714.30 which is the ICD code for systemic juvenile idiopathic arthritis.

ICD stands for the International Classification of Diseases.

Essentially what ICD does is make it easier to communicate diagnoses across healthcare systems and between healthcare professionals.

The newest version is ICD-10, which some places are just finally implementing, is slightly different in that it is more specific for some illnesses and injuries like an ear infection. Physicians now have to list a lot more information including which ear, if it's chronic, etc.

And, with that, some codes have been updated. Above you have 714.30 for SJIA. M08.20 is the new code, however, and it is much more specific to SJIA/Still's. The old 714.30 was very vague, which M08.20 is only SJIA/Still's patients.

So, if you see new weird codes on your billing statements, it's likely because the CDC forced everyone to finally adopt ICD-10 in October 2015.

Monday, December 7, 2015

8 ways to get the most out of your doctor appointments

I hear a lot of complaints from other patients on how difficult it can be to work and communicate with physicians, especially given how short appointments often are now. I work with physicians for a living, so I get their side of it too - they have a lot of pressure to hit certain benchmarks and have a certain number of patients, etc.

Docs don't like the current system any more than patients do.

Short of overhauling the whole system, which is a great idea but a topic for another day, what can patients do in order to get the most from physicians?

First things first, an initial appointment with a provider can be quite difficult. There is so much to cover and examine, especially for us that are chronically ill, that we often stick with that provider with little examination of that choice.

The first appointment with a provider should be treated like an interview.

Yes, there will be things that have to be covered, but you have the power to guide the conversation and, indeed, make it a two-way conversation rather than a one-way dictation on their part.

  • Ask them what they know about your current diagnoses and the medications you're on.

    If they don't know much, are they willing to learn? If not, hightail it out of there!
  • Make sure they are willing to communicate with various providers.

    My rheumy works with my PCP, ophthalmologist, and my dentist. My PCP in turn works with everyone else. This way, my PCP and rheumy are all on top of what is going on with me. It allows them to know much more about my personal care than I could really tell them.

    It also helps my dentist know when to pre-medicate for dental procedures.
  • Ask about their feelings on involvement in patient organizations like the Arthritis Foundation.

    My rheumy is on the local AF board. Many others are at least somewhat involved with chronic illness organizations. Ask them which ones they like and why - it could lead you to more resources.

    Likewise, you can help your physician learn about great organizations out there, too.
  • Ask about their feeling on utilizing technology to communicate versus phone calls.

    I love MyChart. So much. As someone with anxiety, phone calls are not my favorite - and if I'm not doing well, the last thing I want to do is wait on hold and then leave a message and then wait for a call back from the nurse, who has to talk to the doc...

    If your doc loves MyChart and you do too? Go for it! If neither of you does, that's fine too.

    The most important thing is to set up the main communication method.
  • Ask how they feel about engaged patients bringing in information for them to review.

    If you're the type of person who likes to read the latest medical journals for new research and medication information and your doctor doesn't like that, you won't be a good fit for each other. It's neither bad nor good, just an incompatibility.
  • Bring someone with you.

    If you're having a bad brain fog moment, having another person at your appointments really helps.

    It can especially help because we really only take in a small amount of what is discussed at an appointment, no matter how our brain fog is doing.

    What I do is text my hubby right as I'm leaving my appointments. It helps me go over main points and allows me to scan my brain for others things that were discussed.
  • Prepare for visits.

    I'm a list person. So many lists. Very write.

    What I do to prep for my appointments is I'll look back over my social media for the last few weeks to see how I've been doing publicly versus how I think I've been doing. The reality is I'm always slightly worse than I think I am in the moment, so checking social media helps.

    Then I write down on a little half sheet of paper the basic topic with some trigger words. I might even print out a blog post if it seems like it will help.

    Some people use diaries. Others write on their calendars or use apps.

    Whatever works for you, make sure you bring topics to address and don't let the doc go until you've hit all the topics on your list.
  • Tape record or videotape visits, with the consent of your provider.

    Not all physicians will be down with this and it's certainly something you need to discuss. However, I know many people whose physicians will record appointments so that brain fog and memory issues don't get in the way.

    This is also handy for showing loved ones how the appointment went and ask for their help on certain tasks.
What are your tips for getting the most from a doctor's appointment?

Thursday, December 3, 2015

What is #ChronicSex? First chat TONIGHT!

#ChronicSex is a discussion about how we treat ourselves (self-love and self-care), our relationships, and, of course, actual sexytimes.

The first chat will be TODAY at 7pm EST on Twitter, with chats regularly occurring every Thursday evening from 7-9 EST roughly. We'll likely be skipping 12/24 and 12/31, with a few dates here and there canceled or delayed due to later evening meetings I have at work.

To be clear, just like in any relationship, we'll likely build up to talking sex by talking about loving ourselves (emotionally and physically) first and moving through the relationship bits before getting to full on sexytimes.

That said, if sexytimes aren't things you like to discuss via Twitter, we have a private, super-secret facebook group too, but you have to add me as a friend to get in.

If you ever have questions you'd like to ask but are worried, feel free to private message me or email me and I'll ask them in an anonymous way.

#ChronicSex is to get us thinking about ourselves as sexual (or non-sexual) beings worthy of love.

I hope you'll join us!

Tuesday, December 1, 2015

Terminology Tuesday: generic vs biosimilar vs brand name

Amgen recently filed for FDA approval of it's first biosimilar drug, an alternative to Humira (bonus, some info was presented on APB 501 at the recent American College of Rheumatology conference that Creaky Joints wrote up).

But what could this mean for you?

We hear the terms generic, brand name, and biosimilar thrown around a lot these days, so let's start with defining each.

The difference between brand name and generic drugs is easily known in the chronic illness world. Brand name is what you generally see on commercials - Humira, Lipitor, Cialis, etc.

According to the Center for Drug Evaluation and Research (CDER), a generic drug is:

"A drug product that is comparable to a brand/reference listed drug product in dosage form, strength, route of administration, quality and performance characteristics, and intended use." (slide 7)

A generic version of a brand name drug can be created after patents end (20 years- slides 8 & 9) or if the creating company/person waives patent rights, as long as FDA requirements are met... like bioequivalence:

"A generic drug is considered to be bioequivalent to the brand name drug if:

The rate and extent of absorption do not show a significant difference from the listed drug, or

The extent of absorption does not show a significant difference and any difference in rate is intentional or not medically significant." (slide 12)

It may be easy to assume that biosimilars are the same as generics right?


Here is a great visual from Amgen (they're not paying me - I just love this info!):

As you can see, a biosimilar isn't the same as the original drug. In fact, the chemistry of it can be different enough that the bonds don't really even resemble the brand name.

So how do they even work?

Biosimilars go through a vetting process with the FDA, not unlike those that generics go throguh but a little more involved, proving that their version of a drug is as effective as the original brand name version. As such, there is much more analysis that goes into the biosimilar process than the original.

Amgen Biosimilars actually has a great comparison of biosimilars and generics to help define the differences between the two terms. Creaky Joints has a great breakdown as well.

Biosimilars are a great thing! This could save us money, get more drug options out there, and perhaps help someone unable to get on a certain drug due to insurance issues at least onto the biosimilar.

It's not all golden though.

There was a good fight to get naming protocols in place and, thanks to Creaky Joints and Seth's 50 State Network, that's been dealt with.

The biggest issue right now is patient notification.

Thanks to Amgen, you can see where things currently stand.

A quick note - not all biosimilars will be interchangeable. The problem is, though, that the drugs that are deemed interchangeable can be substituted for your original medication even if the script is written specifically for the name brand drug.

One of the biggest problems with that is that this can be done without the notification of the patient OR the healthcare provider.

Yeah, kind of a problem, especially as our bodies don't always react to different medications the same no matter how similar they are. Some people aren't able to take omeprazole (Prilosec generic), for example, as their body doesn't process the medication the same way due to the slight differences.

For us arthritics, this could be bad news. Even if you're stable on a medication, your insurance or your pharmacy could do this, possibly bringing someone out of medicated remission, and you wouldn't quite be able to figure out what happened for a bit.

Would you be able to get stable again?

I certainly don't want to find out!

Want to join Seth's 50 State Network and help make sure that patients are notified when drugs are changed? Check it out here!

Monday, November 30, 2015

Ways you can manage your medications better (and a sweepstakes!)

It's no secret that I love my PillPack.

I get my meds delivered every two weeks in convenient tear-off pouches. They have a great online system for me to manage my meds, including the non-packet ones like my inhaler and such.

The packets also say what's in them for each time you take them and include dosages which is really nice, especially when traveling.

Believe it or not, PillPack is not the only way to get super organized.

There are even apps that help dispense pills like Lumma!

Other apps like Medisafe, My Medical App, and iTriage can help track your meds as well, even reminding you to take them.

MyRa from Crescendo Bioscience is a great comprehensive app that allows you to track labs, symptoms, and medications.

And Arthritis Power from Creaky Joints can do this too (check out this previous post for more info).

Of course, sometimes the tried and true ways work best.

I found this beauty last year during Small Business Saturday in Branson, Missouri. Since I have PillPack though, I never use it anymore...

In the spirit of Christmas and passing on great things, I'm giving away this gorgeous pill organizer over on the facebook page. Why not come by and enter?