Category: theme days

Starting the EMDR process

Posted on by Grayson
Real talk?
I’m mentally frazzled right now.
A few weeks ago I started the EMDR process. EMDR stands for Eye Movement Desensitization and Reprocessing, and it’s a type of therapy especially useful for trauma victims or those with Post-Traumatic Stress Disorder.
Basically, this therapy is a way to allow your brain to process these traumatic events by dealing with the emotions but having safeguards in place and coping tools to help. Some tools used are lights to move your eyes back and forth, a headset playing a series of alternating beeps in each ear, or little vibrators that alternate in your hands.
It’s not easy. You can’t tackle the big stuff right away and even the ‘small stuff’ is a lot more intense than I realized.
This is not my favorite.
But it’s also good.
I can tell that it will help. It’s just a matter of getting there and being ready to process my childhood traumas… and as much as I want to get past them, it’s scary to think of going into them. I feel like I’m standing at a door that sits ajar, behind which there are screams. I know I need to go in there to do something but it’s scary.
It’s sad when you can compare your life to a scary movie. Maybe that’s a part of why I like Scooby Doo and scary movies though.
In Scooby Doo, you always knew the baddie was a person.
In scary movies, you know it’s something inhuman.
Both ideas are comforting in different ways. I want to believe that my mother is human, that her mental illnesses have driven (and still do) her to do some awful things. But she’s done some unspeakable things that don’t lend to being human either, so it can be easier to vilify her and turn her into a demon.
Neither option is awesome.

 

Therapeutic Thursday: Swimming Class

Posted on by Grayson

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.

 

Terminology Tuesday: HAIs

Posted on by Grayson

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


Self-Care Sunday: Exercises in Self-Care

Posted on by Grayson

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?

 

Get Freaky Friday: Link Roundup

Posted on by Grayson

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!

 

Terminology Tuesday: Zone of Openness

Posted on by Grayson

 

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

Self-Care Sunday: resources

Posted on by Grayson

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.

Get Freaky Friday: Relationship advice from religion & bingo fuel

Posted on by Grayson

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?

 

Terminology Tuesday: ankylosing spondylitis

Posted on by Grayson
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

Self-Care Sunday: keeping myself organized

Posted on by Grayson

In the last few weeks, I’ve been working on managing my time better.

One of the great tools that helped me to do so is Tanya’s blog planner at her site, Mom’s Small Victories.

I’ve been able to keep track of the posts I’ve written so far (this is as of 12/30/2015) and what I need to write. It’s easy to look and see what is done, what it’s for, and what I still need to work on.

This is especially helpful as I’m guest blogging in preparation for attending the ePharma Summit the week of February 29th in NYC.

It’s certainly easier than trying to see these things on my already very crowded Google calendar, especially with my hubby’s things on there too!

What are some ways that YOU stay organized with the things that you do?