Sunday, January 31, 2016

My Shot

My latest obsession is Hamilton, for so many reasons.


I don't think I'm the best writer ever, but I can identify with Hamilton as he's described here. 

I'm a bastard and almost an orphan... by choice, but still. I kept my guard up for a really long time until it became clear that I couldn't anymore.

I write testaments to my pain.

There are a million things I haven't done yet.

I'm heading to New York soon on the basis of my writing... only for a few days, but still.

Perhaps one of the biggest ways that I identify with Hamilton through this musical is through this song:


I got a lot of brains, but I'm not really as polished as I should be. 

I'm not as scrappy as I used to be, but I'm also not throwing away my shot.

I try to help other patients rise up.

I didn't think I'd live long, whether due to physical or mental illness.


And I'm passionate about politics!

Okay, so that was a little... convoluted. I know.

We all like to see ourselves as the underdogs sometimes. It gives us that fighting spirit that we need to make it through the hard times... and, well, I've had more than my share of those.

Plus, Lin-Manuel is pretty cool in general.


Gnight you. Yes, you. You there, LOOKIN FRESH AS HELL. Check you out. Leavin a trail of people dreaming about you in your wake.
Posted by Lin-Manuel Miranda on Wednesday, January 27, 2016

I just wish Hamilton wasn't sold out when I head to NYC!





Saturday, January 30, 2016

Happy Birthday Sis!


Today is my favorite lady's birthday. Can you ever believe we were that small?


I know that the last few years have been pretty shitty... I mean, where they ever awesome? Nevertheless, the best part about them all has been how our relationship has grown.


This last year especially sucked, but you have been an amazing momma and done so well in the face of so much crap.




I am so incredibly proud to be your big sister. You keep me good and sane and less bitchy. And I definitely need all three of those traits, knowing how much you look up to me.


And there's definitely no one I'd rather tour AT&T Park and get lost in San Francisco with than you.


Happy birthday BFF.

Friday, January 29, 2016

Balancing Stress

How do you balance taking care of your health with all the other stressors of life?
Balance is something that I never really learned in my childhood. Aside from the physical balance of riding a bike, which I finally did on my honeymoon, I didn't learn to balance other things. I was, for all intents and purposes, an emotional toy for my mother.

The biggest balancing I did was trying to keep her sane. In the end, I learned that no one person can do that for another, and we had to part ways. That separation did wonders for me, though. I have learned so much more about myself since May 4, 2014, than in the previous 26 years of my life.

It also eliminated a major stressor for me - trying to fix my family. I no longer had to expose myself to racist, ableist, discriminatory comments to try to help others. I could just help people who actually wanted and needed that help. I stopped trying to stage interventions. I stopped spending precious energy on a black hole.

For the first few months, this created slightly more stress. I had fear about Mother and her husband lashing out. We moved shortly after this without giving them our address, so I feared they would find me. I feared being cornered by all of that hatred and unpredictable anger.


After my wedding, after dancing with my husband and eating cake and feeling so much love, I knew that I was in the best place of my life. My anxiety and depression are more under control today than they've ever been. My PTSD has had ups and downs but is manageable.

In eliminating that major stress from my life, my health issues improved dramatically.

I have no doubt that learning how much of a badass I am, how to advocate for myself, and how to stop making health care mistakes helped. I don't think, though, that these steps would've been possible without standing up for myself at the core - without eliminating so much ick from my life.

All of these things led to me finding a rheumatologist who 'gets' me. She's hip on research, patient advocacy, and patient data.


And she put me on Kineret which has completely changed my life.

I have to balance my stress, stay physically active, and be right on top of my medication schedule and the like.



If I don't, I wind up hugging a foam roller, crying, and generally feeling like death.



Thursday, January 28, 2016

Therapeutic Thursday: Swimming Class


This month I took my first-ever swimming class.

I was so anxious before the first class on the 9th. I couldn't sleep the night before though that's been the norm lately too so maybe it's unrelated.

I had panic attacks upon panic attacks in the days beforehand.

I should have learned to swim as a child. My uncle tried to teach me for a while when I was maybe eight? Life got in the way. Had I been in real school versus being "homeschooled" I would have learned; had I lived in a non-abusive home I would have learned.

The class itself went great! I did better than I thought I would. But it brought up so many emotions, so much resentment. I am so disappointed with choices that were made (or not) for me as a child.

I've had to teach myself medical terminology in a rapid amount of time. I've had to learn how to navigate insurance quickly. I've even had to deal with LITERALLY rebuilding parts of me that should never have deteriorated in the first place.

I tackled riding a bike on my honeymoon.

Swimming has been the last big issue, the final sticking point regarding my maltreatment in my childhood. I've worked on everything else, just a bit, already.

This is the final way to throw the motherly shackles off, to kill the fear monster she created, and to take back my life fully.

I could never do it without T and my sister, never.




Wednesday, January 27, 2016

Back to school

I started school again last week.

I didn't feel too overwhelmed until this week. I'm not sure my brain remembered all that school entailed from last semester.

Just to gloat again, though, I did wind up with a 4.0 so it was worth it.


That also means, though, that my posts may not come quite as frequently again for a while - especially as I'm heading to New York City at the end of February for the ePharma Summit. If you're in the area and want to meet up, let me know!





Tuesday, January 26, 2016

Terminology Tuesday: HAIs


An HAI is a pretty common occurrence sadly, and they can be horrific and deadly.

Healthcare Associated Infections can occur whether we simply visit our primary care physician, have an injection, or have a major surgery. According to the Office of Disease Prevention & Health Promotion, the majority of HAIs are UTIs, surgery-related, bloodstream-related, or pneumonia. The CDC notes that C. diff is pretty damn common as well.

I'll add that it feels like death from the inside out and has lasting effects.

At least, I finally got my first grown-up IV out of the way
These infections cost people their time, health, and even sometimes their lives. However, most of these are extremely preventable if health care workers follow workflows, execute proper sterilization and cleaning, WASH THEIR HANDS properly, and stop overprescribing antibiotics.

There are things that we can do as patients, as well, to keep ourselves safe:

Thanks, CDC!
These infections have affected people I love in so many ways, but currently, I have a close friend whose family is dealing with the repercussions of an HAI. Randy is an amazing man who wound up with a staph infection as a result of a run-of-the-mill steroid injection. He's been in and out of the hospital and other facilities since April of 2014.

This is one of the most amazing and sweetest families I know. For this to happen to them is incredibly hard to watch. There's a GoFundMe for those of you who can help here.

Sources:

http://www.healthypeople.gov/2020/topics-objectives/topic/healthcare-associated-infections

http://www.cdc.gov/hai/

http://health.gov/hcq/prevent-hai.asp


Monday, January 25, 2016

Yoga

Have you ever tried yoga? What is your favourite pose?
I've been doing yoga and meditating since I was roughly 12-years-old. That's the one good thing Cosmopolitan Magazine introduced me to.

Shortly after I started, I could even do shoulder stands. It's pretty impressive, given my lack of physical activity and the presence of multiple chronic illnesses.



As of this time last year, I stopped practicing for a while. I had awful hip bursitis, and my rheumatologist and I were worried about putting all my weight on some of my joints.

Now that I've been through some pretty intense physical therapy, I'm slowly starting again.

For the moment, my favorite pose is probably the bridge (the second Babar down on the right). It helps to strengthen so many of my joints and muscles, something that I desperately need. Doing it with my feet on a pilates ball makes it more difficult, but AMAZING.

Have you tried yoga? If so, what is YOUR favorite pose?

Sunday, January 24, 2016

Self-Care Sunday: Exercises in Self-Care

Self-care is not easy. We've talked about this before. A lot of people aren't sure where to start or how to go about practicing self-care or self-love.

It's not easy to figure out what to do if you don't know where to start!

In light of that, here are some of the things that I enjoy doing for self-care. Hopefully, this list can spark ideas in you, too! I've added some suggestions under the general ideas.

More physical:

  • Going for a walk
  • Being out in nature
  • Taking a bath
  • Singing Broadway tunes in the shower
  • Cooking or baking
    • I LOVE decorating food
  • Dancing
  • Yoga/stretching
  • Spending time with friends
  • Help others or volunteer
  • Eat your favorite comfort food
  • Make a date night with yourself and go to dinner and the movies
  • Lotion up!
  • Love on your pets
  • Drink water
  • FOR THE LOVE OF GOD NAP

More mental:
  • Writing
  • Meditating
    • Check out the Buddhify app - it's my fav
  • Listening to music
    • I have a Spoonie Fighter playlist here
  • Learning something new
  • Watching scary movies
    • Insidious
    • The Conjuring
    • The Exorcism of Emily Rose
    • It Follows
    • Army of Darkness (it's B-movie scary & hilarious)
    • The Omen (the original)
    • Paranormal Activity
    • The Woman in Black
    • The Faculty
    • Shaun of the Dead (again, funny)
    • Invasion of the Body Snatchers (original)
    • Event Horizon
  • Watching funny shows
    • Bob's Burgers
    • The Office
    • Ash vs Evil Dead
    • Unbreakable Kimmy Schmidt
    • Archer
  • Read (I lean towards non-fiction, so the fiction ones are marked with F)
    • The Demonologist: The Extraordinary Career of Ed and Lorraine Warren
    • Bossypants
    • Rebel Buddha
    • The Pain Survival Guide
    • When Doctors Don't Listen
    • Southern Lady, Yankee Spy: the true story of Elizabeth Van Lew, a Union agent in the heart of the Confederacy
    • The Somnambulist (F)
    • The Atlantis code (F)
    • The President is a Sick Man: wherein the supposedly virtuous Grover Cleveland survives a secret surgery at sea and vilifies the courageous newspaperman who dared expose the truth
    • Alif The Unseen (F)
    • The Ultimate Guide to Sex and Disability: for all of us who live with disabilities, chronic pain, and illness
    • The Monster of Florence
  • Playing video games
    • Star Wars Battlefront
    • Among the Sleep
    • LEGO Jurassic World
    • LEGO Batman
    • LEGO Harry Potter
    • LEGO Star Wars
    • The Last of Us
    • Alice: Madness Returns
    • Heavy Rain
  • Puzzles and crosswords
  • Paint or color
  • Clean your to-do list up
  • Unfriend/unfollow people you don't like or who bring you stress

What are some things you do or some ideas you have about self-care now?



Friday, January 22, 2016

Get Freaky Friday: Link Roundup


Sex has long been a taboo topic to really discuss in the United States. I've been talking about this disparity between how the United States and other countries address sex & sexuality since I was in high school... so over a decade.

Gross.

The younger generation of Americans is ready to discuss sex. We're ready to talk masturbation and females enjoying sex - or why they may not enjoy it or have a libido. We're ready to stop being defined as someone's partner or 'extensions of male fantasy' and start to be seen as ourselves

We're ready to make jokes about sex that may seem too real. We need to learn about our bodies and how they react sexually instead of being forced into abstinence-only education that does nothing good for pregnancy and sexually transmitted infection rates. We're ready to say 'vaginal atrophy' aloud sans giggling at the word vagina. We're ready to question why there are ads to fulfill those male fantasies but not to truly help women.

Speaking of interactions with others... There are a lot of ways that chronic illnesses can affect our relationships and intimacy, but fatigue is a huge sticking point. If you're together when that illness hits, it can be quite hard to keep things together throughout the changes. This means that some of us live in a relationship without sex. There's nothing inherently wrong with that unless each person isn't on the same page - and that can change.

Sometimes it's more our depression and ways of coping that affect our relationships more than our primary illnesses.

Ther are many things that can affect our relationship dynamic like the need to discuss our illnesses. How much do we share? Are we complaining to or burdening our loved ones?

Therapists are great to utilize, whether together or alone. Sometimes marriage or couple's therapy is a great way to visit these issues in a safe place.

Also, sex toys can really help. If you're interested in exploring some of the bestselling sex toys, check out this collection of reviews.

Don't forget to join us for #chronicsex chats over on Twitter every Thursday from 7-9 pm Eastern Time!


Thursday, January 21, 2016

Balancing Guilty Pleasures and Healthy Things

Do you feel like you have a good balance between what is good for you and guilty pleasures?

Honestly? Probably not.

I eat a lot of sweets and other unhealthy foods. Part of it is a habit from growing up. Part of it is the pain relief that pleasures release in our brains.

However, in the last two months, my cravings for such things have died down. I believe part of the reason is that my SJIA and fibro - the two biggest pains in my ass, literally and figuratively - are mostly under control. I simply don't need that pain relief like I did before.

The other part is annoying. I'm not very hungry anymore. I wasn't feeling well around the same time this started and that seems to have limited my appetite in general.

I'm learning to listen more to my body, as well. This all came about while I was doing physical therapy twice a week, so being more active I'm sure has helped as well.

In the meantime, I've lost about ten pounds. I'm happy to have lost them, but the appetite thing is concerning still.

I generally tend to be very spontaneous versus thinking things through, like Heart from my favorite comic series.


I feel like I have little willpower, which is something I've been working on at least. T is a lot like Brain, so I think that helps.

But, I mean, there's a reason Bat-Heart is tattooed on my shoulder...


I know that I am, like Bat-Heart, a work in progress, though.


Wednesday, January 20, 2016

Guest Post - Women: Often “Miss Treated” By Doctors

I haven't been one to do many guest posts in the past, but Katie Ernst is someone you need to know, like now. Without further ado, here's her post full of badassery:

All chronic illness sufferers, whether male or female, experience frustration when dealing with the medical system. But if you’re a woman, whether you realize it or not, your struggle is going to be much much harder.

First of all, women are disproportionately affected by chronic diseases that are life-long and that greatly affect one’s quality of life such as autoimmune disorders, fibromyalgia, chronic fatigue syndrome, and most chronic pain conditions. Considering women’s predisposition to these disorders, you’d think doctors would be quicker to spot them when a woman comes into their office, but it’s actually quite the opposite.

For instance, even though women are more likely to suffer from chronic pain disorders, women are less likely to be prescribed pain medication for their ailments. In fact, studies have found that doctors in a pain clinic were more inclined to prescribe men opioid pain medications while giving women tranquilizers. That is, doctors give men medication to relieve their pain whereas they give women medication to shut them up. Even when an organic cause for a woman’s pain has been identified, doctors are still apt to attribute women’s pain to psychological problems and prescribe her antidepressants instead of pain relievers. Even in children who’ve had surgery, doctors will give boys strong pain relief while giving girls Tylenol.

Medical sexism extends to essentially every area of medical practice. Women are less likely to be diagnosed as having a heart attack, even when presenting with identical symptoms as men. Doctors are twice as likely to attribute a woman’s even “textbook” symptoms of heart attack to anxiety and are seven times more likely to send a woman home from the ER during a cardiac event. Women are 22 times less likely to be referred for a knee replacement, with identical moderate symptoms. Women are less likely to be put on a kidney transplant list. Even young girls are less likely to be put on transplant lists, so the disparate treatment starts essentially at birth.

What does this tell us? The first obvious point is that thousands of women are dying every year because of subpar medical treatment. But even when women don’t die, they are often left living in pain or with other chronic conditions that have not been adequately managed because doctors are too quick to think of a woman’s illness as “all in her head.” As one doctor put it to ABC Los Angeles, “In training, we were taught to be on the lookout for hysterical females who come to the emergency room.”

Knowing all of this, what can we as patients do to advocate for ourselves? First of all, if your doctor isn’t taking you seriously, find a new one. If the next one doesn’t take you seriously, find a third, and so on. It is not uncommon for women to have to go to half a dozen doctors before she finds one that will give her appropriate care. In autoimmune disorders, for instance, it takes on average five years and five doctors before a woman is diagnosed.

Secondly, and I hate suggesting this because this should not have to be the case, but when you go to the doctor, especially a new one, bring a man with you. Doctors will admit that they take women more seriously if her husband or father is there to validate that her symptoms are real and that she’s not crazy. It’s terrible that a woman needs a man behind her agreeing that she really is sick before a doctor will do a full workup, but it’s a fact.

Some women, and even some doctors, advocate for women to see women doctors. However, the data about whether female doctors discriminate against women less is not entirely clear. There are some studies that show that women doctors are just as discriminatory as male doctors. However, there are other studies that show that female doctors are better listeners and therefore more likely to make a proper diagnosis. So, it may be a good idea to seek out a female doctor. From the many women I’ve spoken to anecdotally, I’d say you’re better off with a highly competent doctor than one of a particular gender. Talk to your friends and try to get a good recommendation.

Finally, there needs to be a sea change in the medical community. Doctors need to stop assuming women are hysterical and that their symptoms are all in their heads. To that end, I’ve started the blog Miss•Treated. It’s a place for women to share their stories of being dismissed by doctors so that we can expose the medical sexism that is usually hidden behind the doctor’s office door. When women share their stories, they begin to take their power back. And more importantly, once I’ve collected hundreds of these stories, no one will be able to argue that this isn’t a serious problem. So please, if you relate to what I’ve written here; if it’s been a long road to diagnosis; if you’ve been told by a doctor your symptoms are all in your head: Submit Your Story. Because women shouldn’t need to see five doctors or bring a man along with them before they get competent medical care.

About the author: Miss•Treated is the brainchild of Katherine Ernst. Katherine graduated with honors from the University of California, San Diego with a Bachelor of Arts in Psychology. She went on to earn her Juris Doctor from Loyola University, New Orleans, graduating Magna Cum Laude in 2007. After giving up full-time legal practice because of medical issues, Katherine turned her attention to writing. She's written novels for children and young adults, and has also written freelance articles for publications such as feministing.com, CBS Philly, and numerous other blogs and websites.


Tuesday, January 19, 2016

Terminology Tuesday: Zone of Openness



A 'zone of openness' is one of the main tenets of patient advocacy & engagement... so why does it sound so foreign to so many of us?

The term itself is fairly new in practice, though the theory has been around since the days of Seinfeld. An article about the PCORI project associated with this term explains the main issue:
In a 1996 episode of the television show Seinfeld, Elaine objects to putting on a paper gown because the rash that brought her to the doctor’s office is already visible on her arm. After she challenges the label of “difficult” that she sees in her chart, the physician refuses to take her rash seriously. A doctor Elaine subsequently visits sees the notation in her chart and also disregards her problem.
Although this scenario was played up for laughs on TV, real-life patients do worry about being perceived as difficult, researchers at the Palo Alto Medical Foundation Research Institute (PAMFRI) learned in a recent study. Patients believe such a label can lead to lower quality care. “We refer to ‘Elaine’ when we discuss this fear,” says Dominick Frosch, PhD, formerly of PAMFRI and now at the Gordon and Betty Moore Foundation.
The zone of opennes, then, is the creation of a space where an 'Elaine' cannot happen, where patients' concerns and issues are fully heard and understood by their physicians, and where physicians act on that information instead of creating negative personality-judgment comments that really have no place being in the chart anyway.

Sources:

http://www.pcori.org/research-in-action/creating-%E2%80%9Czone-openness%E2%80%9D-doctor%E2%80%99s-office

Sunday, January 17, 2016

Self-Care Sunday: resources

Whether you're a caregiver or caregivee - or neither! - self-care is integral to living a quality life. I'd like to give you some very basic resources on self-care here.





Next week, we'll talk a little bit more about exercises and ideas on self-care.


Friday, January 15, 2016

Get Freaky Friday: Relationship advice from religion & bingo fuel


I'm not generally one to post a lot of religious information, mostly because I'm really not religious. I follow a Buddhist personality, but that's about it.

However, my husband and I found this article on the Jehovah’s Witnesses website a couple of weeks ago about when a spouse has a chronic illness. Some of the language is ableist in nature I think. Obviously, there is also a little more religion than I would personally love to see, but what can you expect?

Here are some of the main points, though, that I found pertinent to our ongoing discussion of self-love, self-care, relationships, sex, and sexuality with chronic illness:

MARRIAGE can be a challenge, but when one mate becomes chronically ill while the other remains healthy, complications can multiply. * Are you caring for an infirm mate? If so, do any of the following questions worry you: ‘How will I cope if my mate’s health declines even further? How long can I continue to take care of my mate and also do all the cooking, cleaning, and secular work? Why do I feel guilty for being the healthy one?’
On the other hand, if you are the ailing spouse, you might wonder: ‘How can I respect myself when I’m unable to carry my load of responsibility? Does my mate resent me for being sick? Is our happiness as a couple over?’
Sadly, some marriages have not survived the strain caused by a chronic illness. Yet, this does not mean that your marriage is doomed to failure.
Many couples survive and even thrive despite the presence of a chronic ailment. Consider, for example, Yoshiaki and Kazuko. A spinal injury rendered Yoshiaki unable to make even the slightest movement without assistance. Kazuko explains: “My husband needs assistance with everything. As a result of caring for him, my neck, shoulders, and arms ache, and I am an outpatient at an orthopedic hospital. I often feel that caregiving is overwhelming.” Despite the difficulties, however, Kazuko says: “Our bond as a couple has become stronger.”
...
Rather than assume that you know the best way to show consideration for your spouse, why not ask him or her what would be most appreciated? Nancy, mentioned at the outset, eventually told her husband how she was affected by not knowing the family’s financial status. Now her husband endeavors to be more communicative in this regard.
TRY THIS: List ways that you feel your mate can make your present situation a little easier, and have your spouse do the same. Then switch lists. Each of you should select one or two suggestions that can realistically be implemented.
... 
Together you might take regular breaks from serious medical concerns. Can you still enjoy some of the things you shared before illness struck? If not, what new activities can you try? It could be something as simple as reading to each other or as challenging as learning a new language. Having a life together outside the illness will strengthen your “one flesh” bond—and increase your happiness.
...
TRY THIS: List on paper the obstacles you face in taking care of your mate. Then make a list of steps you might take to overcome these or to cope with them more effectively. Instead of overanalyzing them, ask yourself, ‘What is the simplest, most obvious way to improve the situation?’
I'll admit that their use of the word 'mate' is odd. I get why they chose that, though.

It's important during our relationships that we all take care of ourselves, whether you're monogamous, polyamorous, asexual, or a cis-gendered heterosexual white dude. Self-care and self-love are integral to how we interact with each other. These things color our relationships, how we communicate and interact with others.

I used to get really grumpy when I was hurting. I mean, I still do, but it's different you know? I used to get incredibly combative and would brood.


Taking my emotions out on others - T, my sister, etc - did not lessen my pain. It did make me feel more like I deserved the pain, however.

It took me a while to realize how this affected my relationships. It took even longer to try to correct that.

The Spoon Theory has really helped. T and I have some code words we use as well, like Bingo Fuel. Bingo Fuel is simply the point where you've run out of enough fuel that you must turn back to ensure that you can get to base. T and I use this when we hike or snowshoe so that we can keep track of my energy/pain levels when we're being active.


That still depends on me to evaluate constantly and communicate that need... which doesn't always mean that I do this. The idea is a good one, though.

What about you? What are ways you've utilized to communicate illness issues better?


Thursday, January 14, 2016

Ode to Alan Rickman


Right now I cannot comply.


Like many, I woke up this morning to the sad, sad news that Alan Rickman passed away from cancer at age 69.

Alan was my first celebrity crush. I was a tiny bit enamored with him.


Okay, more than a tiny bit, but I couldn't let it show. I was kinda young ya know.

My family loved watching the Die Hard films as well as Robin Hood, so I was exposed to him on the regular.


You cannot deny that he was an attractive man, incredibly talented as an actor of both stage and screen.


And that voice!




He was great at being a sarcastic bastard, something I appreciated TONS in my teens.




Of course, he was in the Harry Potter films as Snape, a character we all loved to hate until the end. I've talked before about how helpful the HP franchise was to me finding my voice, to not feeling alone growing up in an abusive household.

On seeing the news this morning, I instantly wanted to stay home from work and toast this amazing man.


Alas, I had to work today.

My next feeling, though, was anger.


First Bowie and now Rickman? Both the same age and both fighting cancer? In the same week?


I have too many of the feels. Bowie's death left me numb, but this death... Someone that ended up being so integral in my life in different ways at different times... I sat on the couch and cried this morning before getting in the car... and crying... before getting to work... and crying into my coffee.

I have no doubt that I'll be enjoying a beverage (and the ice cream in my freezer) tonight in honor of this man.

Sleep tight, Half-Blood Prince.



Wednesday, January 13, 2016

Gillian Anderson & Juvenile Arthritis?


Starting on January 24, 2016, and running for five weeks, Gillian Anderson will be auctioning fun things off to raise money for juvenile arthritis and Neurofibromatosis, a set of genetic disorders affecting the nerves.

I'm not sure what connections, if any, Gillian may have to these diseases, but this is pretty badass...

which is generally how I consider her anyway.

Go show her love on facebook!


Tuesday, January 12, 2016

Terminology Tuesday: ankylosing spondylitis


Ankylosing spondylitis is sure a mouthful!

If we break down the name, though, we can learn a lot about the disease before we even get into specifics.

Ankylosis - meaning stiffness or immobility of a joint
Spondylitis - meaning inflammation of the vertebrae 

AS is a type of autoimmune arthritis that affects the spine primarily. It affects men more than women and can, over time, fuse the vertebrae in your back. Most specifically, the SI joints can become affected.


Other areas of the body that can be affected are the eyes, shoulders, and hands and feet.

AS is one of the autoimmune arthritis types that actually has a genetic marker - HLA-B27. If you have this marker, it doesn't mean you'll have AS - and you can even have AS without it - so it may not be of much help. In addition to blood tests, a person will undergo imaging tests to check out the areas most affected.

Medications for AS are pretty much those you've come to expect from autoimmune arthritis/rheumatic diseases - NSAIDs, methotrexate, TNF inhibitors like Enbrel, etc. Physical therapy and surgery can help as well. 

Moving and stretching is incredibly important with AS.

Sources:

http://www.merriam-webster.com/dictionary/ankylosis

http://www.merriam-webster.com/dictionary/spondylitis

http://www.eorthopod.com/images/ContentImages/spine/spine_lumbar/lumbar_spine_SI_joint/SI_joint_anatomy01.jpg

https://www.spondylitis.org/Learn-About-Spondyloarthritis/Ankylosing-Spondylitis

http://www.mayoclinic.org/diseases-conditions/ankylosing-spondylitis/basics/definition/con-20019766

https://www.spondylitis.org/Portals/0/pdfs/learn-about-spondyloarthritis/spondyloarthritis-overview-qa-dr-walsh.pdf

https://www.nlm.nih.gov/medlineplus/ankylosingspondylitis.html


Monday, January 11, 2016

The Proust Questionnaire

David Bowie died. Like many, I am saddened and somewhat numb at the news.


A friend missed my 10th-grade birthday party to head to a Bowie concert and brought this back for me as a gift.

It definitely just became my favorite autograph.

In reading so much about Bowie today, I came across his answers to the Prout Questionnaire. If you're familiar with Inside the Actor's Studio, you'll recognize these as the questions asked at the end.


It got me thinking how much fun it might be to answer the questionnaire ourselves. We see so many others answer it at the end of iconic interviews. Why not give it a go?

Here are my answers - feel free to share yours in the comments!

What is your idea of perfect happiness?
Snuggling with my loved ones.

What is your most marked characteristic?
Idealism.


What do you consider your greatest achievement?
Still being idealistic & optimistic despite illness, abuse, and more.

What is your greatest fear?
Death.

What historical figure do you most identify with?
Queen Elizabeth (see why here).

Which living person do you most admire?
My sister & my husband.

Who are your heroes in real life?
See aboveeeee.


What is the trait you most deplore in yourself?
When I'm triggered, I get very argumentative.

What is the trait you most deplore in others?
The downplaying & negating of experiences or hurt.

What is your favorite journey?
The journey we each take to find ourselves.


What do you consider the most overrated virtue?
Hope (see why here).

Which word or phrases do you most overuse?
“DUDE"

What is your greatest regret?
That I couldn't help my mother even though I know I'm not at fault there.

What is your current state of mind?
Contemplative.

If you could change one thing about your family, what would it be?
I'm related to some people I wouldn't even want as friends.

What is your most treasured possession?
Aside from the Bowie autograph? A sticker from my Grandma Kay's collection.

What do you regard as the lowest depth of misery?
Alienating anyone who could help you and being on the verge of financial and mental collapse.

Where would you like to live?
Slightly off the beach in Oregon.


What is your favorite occupation?
Writer & health activist.

What is the quality you most like in a man?
Humility.

What is the quality you most like in a woman?
The opposite of cattiness.

What are your favorite names?
Layla & Hermione.

What is your motto?