Monday, February 29, 2016

Rare Disease Day

Want to get involved for Rare Disease Day?

Hop on social media!

By using the tags above, you can help raise awareness of rare diseases in the United States.

You should also consider attending tomorrow's Twitter chat:

NORD-2016-Tweetchat

Just use the tag #abcDRBchat to be involved!

There's more fun stuff to use and be involved with here.

Happy Rare Disease Day!





Wednesday, February 24, 2016

New York Bound!

This weekend, I'm hopping on a plane and making my way to New York City for the ePharma Summit!


By the way, check out the pieces I've written for them so far:


I'm excited for SO many reasons. 

This is the first time I'm visiting NYC. My sister-in-law and her boy toy moved to NYC towards the end of 2015 and I miss her face. 


PLUS we're going to see SJIA fighter Ana VillafaƱe kick ass on BROADWAY.


ALSO fellow rheumatic disease person and all around hottie Chef Seamus Mullen has a restaurant in the area.

Courtesy of http://tertulianyc.com/
It's fine if I swoon right?

Plus I get to meet and hang out with some of y'all! If you're in the New York/Newark area and want to hang out, let me know! I'd love to meet you!

Ironically enough, finals are right after I get back from NYC... so if you don't hear a lot from me in the next couple days over here, go over to the ePharma page!





Monday, February 22, 2016

Packing for trips

Going on trips can be really awesome as long as you've packed in the best way for your illness and the type of type you're taking.

Planning anything with an illness isn't easy, but this especially goes for packing for a trip - especially one you go on a plane for. 

I have awful luck with checking bags so I try to keep everything to my larger carry-on and my backpack. The amazing packing strategy I have helps:

Take things you can wear multiple times during your trip.

I'm not talking about things like underwear that should only be worn a day at a time, I'm talking things like blazers, pants, etc. Bring enough variety, though, that people don't necessary question that you're wearing the same thing. 

For example, pair your pants with flats one day and boots the next. Bonus points if you go for tall boots that will end up covering some of those pants.

In order for this to work, the clothes you bring really have to be more muted. I likely wouldn't get away with wearing my red plaid pants two days in a week at a conference, but easy staples like black dress pants or leggings will go far.

If I didn't sweat so much or like fashion, I might only bring a pair of leggings to NYC!

Alas, I'm cursed with the fashion bug.

Still, other things pop up. We get concerned about what illness-related tools we should bring. 

How much K-Tape do I need? Is there room for my Biofreeze and my makeup in my liquids baggie? I've had good days lately, but what about bringing my fold-up cane? NYC is a lot of walking.

The best thing to remember is to take things you may not be able to pick up in a store on your trip. Biofreeze comes with me in all cases because I've only seen it online. K-Tape can be found at many places like Target. My badass House cane? We'll see how I feel.

Do you have any packing tips for trips?





Sunday, February 21, 2016

Compassion Meditation

Devote five to twenty minutes to a simple compassion meditation. Start by visualizing someone toward whom you easily feel compassion, and silently repeat the words May you be happy and free from pain and suffering. Now visualize yourself and mentally repeat the same thing. Next, visualize someone toward whom you have neutral feelings while repeating the same well wishes. After that, visualize someone for whom you have trouble feeling compassion, to help extend the goodwill you've fostered toward them. End the meditation by extending your well wishes to everyone on the planet, with these words: May all living beings be happy and free from suffering.
I love compassion meditation. Quite honestly, it's the one meditation I tend to practice the most.


The only hard time I have is picturing those I don't get along well with.

I go for big fish instead of the guppies that are easier to catch.

Have you done this type of meditation before?






Friday, February 19, 2016

Self-Love 101!

What's Self-Love 101? A week-long email course specifically for us chronically ill and awesome peeps!

The aim of this course can be summed up by my friend Jaq here:

Jaq would like you to know glasses are not delicious

I want to help you challenge yourself - to challenge the notions that we have to be productive 110% of the time and that it's not okay to take breaks.

Gus suggests resting with a Tardis blanket

I want to help you examine the relationships you have, both with others and yourself, to help you be the best - and healthiest - you.

Jaq and Oreo have the best friendship EVER

I want to help you feel happier about yourself and to stop that negative talk that's so common, whether you're ill or healthy. I find that my own negative self-talk gets much worse the sicker I am, though, because I start feeling like a bad friend for canceling plans and the like.

UPDATE: The e-book is ready and waiting for the course to begin. If you sign up by 2/27, I'll send you an extra something something!


I hope that you will join me on this journey! Sign up here!






Thursday, February 18, 2016

Lifestyle changes & Chef Mullen

In the past, I've been pretty grumpy when it comes to certain lifestyle changes that people try to prescribe for those of us who are chronically ill. We get a lot of well-meaning suggestions that end up making us feel like others don't understand.

We've often already looked into changes you've suggested and they either didn't work or won't fit with our lives.

It stinks butts.

I want to clear things up, though - I am 110% pro-lifestyle changes as long as they work for you and you're being safe about them.

I've talked a little bit about how I follow a gluten-free diet for many reasons. It doesn't cure anything but it does help me a lot with pain and intestinal issues. I hope to speak more about this in the coming year. 

Doing an elimination diet truly helped me get in touch with the foods that my body cannot handle. My body hates gluten and can only handle milk from certain local places it seems. Dairy, in general, should really be a no-no for me... but when you crave nacho cheese and jalapenos, the fake stuff just won't do. I've also noticed that my body doesn't enjoy many sodas, save colas featured in a red can or root beer featured in a grey can.

I'm not the only one who sees changes with food and exercise. There are people who can control their illnesses with these kinds of changes alone even, like Chef Seamus Mullen:
I cut sugar, dairy and grains out of my diet and focused on a largely plant based diet supplementing grass fed meat and wild seafood. When it came to booze, I didn't drink for 2 years (but have since added a little wine from time to time). 
Within a year I was off ALL of my medications and there were no longer any signs of RA or any other autoimmune disease in my blood, something I never would have expected a year earlier. As I continued on my journey, my body changed shape; I lost weight, became more flexible, and rediscovered my inner athlete. 
I started cycling competitively, riding an average of 150 miles a week, and I started practicing yoga.
Courtesy of Amazon
You should definitely pick up this cookbook. Any diet that says it's cool to eat chorizo you pan fry with Brussels Sprouts is cool with me!

My concerns have been with people trying to "be healthier" and not necessarily keeping their doctor apprised of everything. Vitamins can have side effects AND counteract or interact with medications. It's incredibly important to work with any medical professional you see about any and ALL changes you are eager to make regarding lifestyle and eating habits.






Wednesday, February 17, 2016

Opiates for pain relief: what patients have to say

Recently, there have been many discussions centered around opioids and other pain medication. This ranges from the speculation that opioids are a gateway to heroin addiction to the overprescription of these drugs. As a former Oregonian, it saddened me to see Senator Ron Wyden embrace the CDC prescription standards for opiates. These guidelines do a world of harm to chronic pain patients.

There is no denying that there are people for whom these medications are bad news. The costs to employers specifically can be astronomical. Heroin use rates among younger people are on the decline, so who are primary abusers and users? Middle aged white people

If you become addicted to opioids, you *may* be more likely to move to illicit drugs. 


What about those of us who need to utilize these pain medications for relief? Those of us who can stay on a consistent dose without increasing, as those with addiction issues often do? We are often labeled as ‘dependent’ but that’s only due to the positive impact made on our lives due to these medications, that we do rely on them to be able to function, but that's not the same way an addiction presents.

According to the National Safety Council, “Studies have shown NSAIDs are just as strong as the opioids.” However, some the information cited involves combining multiple NSAID types - something that most of us in chronic pain are told NEVER to do in order to protect a liver that already works incredibly hard to process other medications. Also, the FDA may not believe the benefits of those outweigh the risk either.

As someone who constantly takes NSAIDs, I can certainly say that they do not provide the same level of relief to chronic pain patients. I’ve been taking NSAIDs since age 7 due to my Systemic Juvenile Idiopathic Arthritis. I’ve had to switch NSAIDs a few times due to them losing effectiveness and harming my GI system.

As my friend Mariah points out, better care has led to an increase in opioid prescriptions. She discusses a session at the American College of Rheumatology 2015 Conference where two physicians discussed the use of opioids for chronic pain not related to cancer. One physician remained staunchly against the prescription of opioids for chronic pain patients while the other believed in using them depending on the patient, as refusing them can deny patients the pain relief they so desperately need.

Many questions come up during this piece for me. Why is chronic pain unrelated to cancer being compared to that related to cancer?

With opioids, my friends with rheumatic illnesses can move around enough to keep pain at bay, sleep at night in order to work a normal 9-5, or spend time enriching the lives of their children instead of sitting in pain.


I asked some of the patients I know to share a bit about their journeys with pain medications:

One patient in Texas said: 
My Dr said that she wants to physically see me each month to get my script. I don't have insurance and can't afford to do that each month. Our free clinic won't write for them either... Our health care system sucks! Not sure what I can do though.
Another in Texas: 
I couldn't function without them. My GP prescribes them. My old rheum would drug test if you wanted him to prescribe. Well, I also smoke marijuana and that would have me booted from the practice altogether. I get them where I can bypass that.
Yet another patient in Texas: 
If I didn't have spousal support/alimony, I wouldn't be able to afford seeing a pain specialist. It's so freaking expensive!
 A patient in the New York area:
I have only ever been prescribed opiods in the ER or by a GP in a flare. I love my rheum but he doesn't do pain management of controlled substances because of the current laws and how much more difficult it will make his practice and how many fewer patients he would have because of the increased visit frequency required.
One pt in South Carolina: 
I'm on Diluadid 2mg twice a day. It managed my chronic arthritic pain extremely well at first, but all it does now is make me sleepy. Does it manage my pain? Yes and no. When I'm flaring there is NOTHING that makes my pain go away. Not even high dose pain meds given by IV in the hospital. Nothing. That's the way my arthritis is. Intractable. So every thirty days I pick up my prescription for a 30-day supply and muddle through another month of trying to manage my pain without really managing my pain!
Me?

Opiates tend to not work well for me because of my allergies, frankly. I can't do Tylenol at all, so hydrocodone on its own is what I can take - Zohydro. It's strong stuff and, frankly, I reserve it for the worst pain I have. There are types of pain that doesn't fully touch for me, like the bursitis I had this time last year that required a few bursal injections.


Still, it took care of the pain associated with limping and favoring one leg over the other. It allowed me enough of a break to be able to sleep some - even on high doses of prednisone. I was treated like a drug addict and criminal picking them up from Walgreens, but at least they didn't turn me away.

For that, I am grateful.

I take Lyrica, another controlled substance, daily. Before I started on that, my fibromyalgia was so bad that I was missing 1-2 days of work within a two week period. My allodynia was so bad that I couldn't wear clothing - all I could wear was my fleece zebra blanket.

Unfortunately, that is not proper work attire, save for when I'm blogging.

Now that I'm on a good Lyrica dose, I do okay. Currently, I'm in a fibro flare and have missed four days of work in a month's time due to it, but before that I was doing pretty well.

Without my Lyrica, I'd be unable to work.


I also wouldn't be able to get the physical contact I so love from my husband.

Other young people I've spoken with have shared how they are often forced into signing contracts, jumping through ridiculous hoops to get any semblance of pain relief. We’re sent to pain management clinics where we’re told the solution to our pain is to lose weight, exercise, stop eating poor food, and think positively. We come to fear those visits, to fear the times we have to utilize the emergency room due to overwhelming pain. 

This leads to increased pain and mental anguish as well as costing the healthcare systems more in the long run. When we chronic pain patients disregard our own pain, it can lead to hospitalizations, surgeries, and worse.


Chronic pain patients are often female. Due to our gender, we are not believed about pain as it is. We need to examine, as well, the way we approach racial issues and pain relief... and poverty, too.

Do you want to know why we may seem desperate? 

We’ve seen our (former) primary physician who laughed an abscess off as a pimple, wanted us to keep taking our immune-system-suppressing medications, and told us to grow up.

We've researched pain and learned about how negatively it impacts all aspects of our lives, from interpersonal relationships to even how intelligent we are.

We've been interviewed and had people belittle us about our pain relief.

Since there is no way to know who will become addicted, shouldn’t the focus be on supporting social services that help to check on people living with chronic pain who are on these medications? Shouldn't we be embracing conversation starters like the recent Super Bowl commercial about Opioid-Induced Constipation instead of making poop jokes & assuming everyone on pain medications is an addict? Should health activists be taking over important areas in other healthcare issues to try to make a point to the Bill Mahers of the world? (Hint: no).

Approximately less than 9% of people who have a substance abuse problem abuse opioids. Some of them are even physicians. What about them? Do they not also deserve pain relief? Our respect, love, and help instead of being vilified?






Tuesday, February 16, 2016

A holy cow of a rheumy update

I saw my rheumatologist on Friday morning.

Last week, I cried in my office. In the year I've been seeing my rheumy, this is what my sed rate has done:


My doc sent me this note along with the lab results: "SO impressive to see from 8 months ago how wonderful your labs are now." 

And she hasn't even seen it from the beginning...


From Fri at 8:45 am - 
I'm about to leave work to backtrack towards my house and head to my appointment. I'm nervous, especially as I realized yesterday I'm in my first fibro flare where Arthur has not joined in. 
It's weird.


We agreed that I'm in a fibro flare... and that I should stop swim class.

It's too much right now.

BUT everything else is SO AMAZING!

I showed my doc the graph above and she was just astonished. I don't know what all is factoring into me feeling so well, but we both agreed that this is something that was SO needed.

No mention of the R-word yet - I don't think either of us want to go there too soon.

Now I can get to truly helping others the best that I can.





Sunday, February 14, 2016

The Raven

It's no secret that T and I are complete nerds. We're proud of it. Currently, we're rewatching Star Trek: Voyager. There is a lot I can say about the show, from the sassiness of Captain Janeway to the complexities of being lost in a quadrant of space humans have never seen to the process of helping a former Borg 'assimilate' to her human body.

We're currently watching season four, the season where Seven of Nine appears and we learn more about her backstory.

H/T Memory Alpha
As we started watching the episode, Seven begins to have these visions where she sees other Borg coming towards her. Instead of embracing or simply being indifferent, she feels intense fear. Right then, I had my suspicions on what this episode would entail.

Upon heading to sickbay, The Doctor examines her and finds elevated levels of various chemicals in the brain. My suspicions are confirmed and The Doctor informs Captain Janeway and Seven that this is reminiscent of Post-Traumatic Stress Disorder.

Side note: flashbacks suck, but I'm glad mine don't include creepy animals like ravens.

H/T Memory Alpha
As these flashbacks continue, Seven begins to act out. Eventually, her Borg hardware starts trying to take over again upon hearing a homing beacon. That homing beacon eventually takes her to the planet that her family's ship crashed on - The Raven.

During this time period, she has gone through the main stages of PTSD very quickly - flashbacks, hypervigilance/hyperarousal, and being numb like threatening to assimilate others.

H/T Memory Alpha
Quite honestly, this is how it really happens.

Sometimes we get to that realization that we are safe but can't shut down the memories. Other times, it takes something big to knock us out of the cycle. For Seven, being on the ship did that:
It happened here. This is where it began. This is where I was assimilated. This was our ship. We lived here. We lived here for a long time. My father did experiments. They were very important and we had to travel a long way. I had my birthday here. My cake had six candles on it and... and one more to grow on. And then the men came. Papa tried to fight them, but they were too strong. I tried to hide. Maybe they wouldn't find me because I was little. But they did. And then Papa said we were going to crash and the big man picked me up and then suddenly, we weren't on this ship anymore. We were somewhere else. And then I became Borg. 
Seven talks often about how difficult it is to interact with other humans. She feels isolated, alone. She doesn't know how to behave or how to do simple things like eat.

H/T Memory Alpha
It's not unlike how I've felt - having to have my husband show me how to brush my teeth or carry out other simple tasks. There is a shame in that which can keep people from pursuing that learning.

At the end of the episode, Seven escapes. She starts learning more about her humanity, trying to learn about creativity - something Janeway was discussing with her at the beginning of the episode. She says that she will eventually learn more about her parents from the ship's computer, but isn't ready yet.

In her own way, Seven's immediate battle mirrors what many of us living with PTSD go through. At the beginning, we don't often fully comprehend our flashbacks. They are incomplete or, like Seven's, not entirely accurate. We don't understand what is going on with our body and mind.

We don't get what we're feeling.

Like Seven, it takes someone telling us that we're okay. In the immediate situation, Tuvok was able to help bring her out of the attack and work on getting to physical - and emotional - safety. Once back on the ship, The Doctor, Janeway, and others work with Seven to help her grow, to feel safe.

H/T Giphy
I never thought that I could identify with one of the Borg, but damn. There is some irony in the fact that I've said T is similar to Tuvok in the past as well.

I'm not sure there's a point to this post, except to point out how expertly PTSD has been shown in Star Trek: Voyager.

Other pieces on the subject or this episode:
Seven Of Nine: Posterchild For Childhood Abuse & Recovery?
The Raven (Memory Alpha)




Friday, February 12, 2016

Get Freaky Friday: Sexy Talk with the Belchers


Ah, Valentine's weekend. It's that special time where we all fund those giant corporations in order to show appreciation with chocolates and flowers once a year that we could show every day with kind words.

Courtesy of The Simpsons
Hooray capitalism!

Anyhow, let's talk some sex for the big weekend, eh?


The boring definition is that sex is different for many people and a singular definition can't really be pinned down.

The less boring definition is that it can be many things including the following: oral sex, anal sex, vaginal intercourse, scissoring, and manual sex/masturbation. This definition can change for each individual, especially those of us with disabilities. Some people with spinal cord injuries receive pleasure in certain non-traditionally sexual spots like their knee because that's a spot where they may have some feeling.

One quick word? You're probably going to learn a lot about me today.

Sorry fam.


Most people have their first sexual experience as some form of self-pleasure which can even happen in the womb.

Just don't think about jerking it in your mom.

Ew.

Let's get some anatomy down. First, please note that this is not meant to be an exhaustive post. While I aim to be inclusive, I know that using phrases from Bob's Burgers like 'lady parts' and the like could make it not feel like that. I am also writing this from a very sex-positive, feminist viewpoint.

Now that we've got THAT out of the way...


A lot of sexualized parts are lady parts.

Yay, patriarchy!


Anyway...

We have boobs which I assume everyone is familiar with.

We have butts.


And we have vaginas.

It's actually a LOT more complicated than that.

The vagina is something we are hopefully all somewhat familiar with, but if you're not click here for an anatomical drawing.

We're led to believe that vaginas are where it's at. Porn and other depictions of sex tell us that women should achieve orgasm via vaginal penetration.

Guess what?

Only less than ten percent of women normally orgasm from penetration alone. The rest of us enjoy or rely on clitoral stimulation for our orgasms. If you don't believe me, check out most vibrators. Ones like this one are generally made to 'attack' the clit, not for penetration.


Penises are funky. As a wife and a momma to three boy guinea pigs, I see enough on a regular basis to know.


Also, yes, you can fracture the penis. Please be careful.


Anal sex can be enjoyable no matter your sexual orientation.

The best advice I can give is to use plenty of lube (and then even more!) and to speak up if anything isn't comfortable.

If it doesn't feel great, that probably means some parts are going to hurt worse than they should.

Also, towels are your friend.

Also also, maybe use some toys to get used to/try out the sensation first.


Toys can be pretty awesome.

For people with limited mobility or certain conditions (Sjogren's for example), toys and sex furniture can be a great way to either get wet/hard or to experience an orgasm without having to experience too much in the way to discomfort.

Toys can also be a great way to experience self-pleasure, especially if you have any issues with orgasms due to medications or other reasons.

Please make sure to read directions on any toys you may get, however, as certain types of lubes aren't compatible with certain toy materials. If you want to play it safe, water-based lubes are much more likely to be better for your body and your toys. I recommend Almost Naked from Good Clean Love.

Also pick up a cleaning solution for your toys. They can get really germy, especially certain materials, and lead to infections.


When in doubt, try to visit a sex-positive sex shop like The Tool Shed in Milwaukee, Wisconsin.

I promise we'll explore more of these details as time goes on! 

Happy Valentines Day! Go get you some!







Wednesday, February 10, 2016

Wacky Wednesday: Piggie Giggles!

With everything going on lately - celebrity deaths, politicians echoing genocidal maniacs, etc - it's always good to take a step back and be able to laugh at things.

Enjoy these cute piggie videos!












Tuesday, February 9, 2016

What #ChronicSex has taught me

Self-love, self-care, relationships, and sex or sexuality all tend to fall to the backburner when patients are living with illness. The issue with that is that chronic illness lasts a lifetime. I have been ill since I was five-years-old. I cannot be expected to be non-sexual all my days.

It's just not going to happen.

Especially when I clean up so good

So, why aren't we discussing these topics in the chronic illness community more often?

At Medicine X in September, there was a panel on relationships and intimacy with illness. It was brought up that those with chronic illness wished that physicians would bring up Quality of Life (QOL) issues more often. Roni Zieger pointed out during a Q&A session that 1) physicians are not taught how to help with these things, and, 2) that physicians themselves may be facing difficulties in these areas due to many factors.

Working for a group of pediatricians, I can certainly see validity especially in the last point. I watch the physicians I work with work sometimes 15 hour days a few times a week between clinical and administrative work. It's amazing.

Sex especially is a taboo topic. Those of us living with disabilities are often infantilized by those around us, or it's assumed that we don't want/need sex. I am sure that part of that has to do with the fact that very few of us bring up these issues ourselves, save myself, Mariah Leach, and a few others.

It's all so wrong.


My answer to this was to start a chat that runs Thursday nights from 7-9 pm ET on Twitter - #ChronicSex. We discuss topics from mindfulness and activities for building self-love to masturbation to dealing with the caregiver/caregivee dynamic in a relationship to full-on getting it on as we discussed last week.

In the few weeks since the chat started, I have learned a lot about others and myself.

One thing I already knew from my experiences as a sex-positive feminist and chronically ill women was that partners may not initiate sex because they're worried about our pain levels. Our medications also affect our sex lives, whether they directly impact libido or cause issues like vaginal dryness or extreme fatigue and nausea.

I'd rather not vomit on my husband.


As a society, we don't discuss pleasure in regards to women often either, whether that's masturbation or sex. When you consider that the majority of people with certain chronic illnesses are female, this is really bad.

On a more emotional level, our partners can be quite dismayed about our illnesses. They mourn what our lives may have been in the past and feel both downtrodden and helpless because they can't solve our pain.

Those of us with illnesses also tend to focus on how inadequate we are. It's put in our face in many ways, even when we see pharmaceutical ads for medications that failed us.

Perhaps what I've learned the most during the weeks this chat has gone on is how much our ability to be in a relationship affects our self-worth. As a younger woman, I felt the need to be in a relationship or I wasn't complete. Now that I'm married, it's easy for me to say that I wouldn't necessarily need one because I'm not in that position. The reality is that 1) my husband is my main form of support, and, 2) society tells us we grow up to have a family and provide for them. If going on dates is difficult due to our illnesses, this part of our lives is incomplete, leaving us feeling like bigger failures than before.

This can be especially true if we've had a relationship end due to illness as well.

And then we crave intimacy. Sex is a basic human need and without it, many struggle.

I've also learned a lot about myself.


Talking about sex and sexuality has been a passion of mine since high school. I volunteered with Planned Parenthood, helped get people educated about sex, and was always that person who had condoms to hand out just in case.

This chat has renewed my passion for health advocacy in a way I wasn't sure was possible.

It's also opened a door for the open discussion of sex, relationships, and other Quality of Life issues not commonly talked about. These issues heavily impact our lives and yet we stay silent because it isn't proper to discuss these things or we're damaged and should be happy that we're in a relationship at all.

I hope that, in openly talking about these issues, we can do more as patients to help each other and be able to explain issues to physicians and others more clearly.

(originally posted on the ePharma site on 2/9/2016)