Balancing Guilty Pleasures and Healthy Things

Posted on by Grayson

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.

 

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?

 

Setting Limitations

Posted on by Grayson

What is one way you set limits for work invading home or home invading work?

I think this is a hard question for me to answer since in reality I have multiple roles that involve work at home.

My full-time day job is really dedicated to not allowing people to work outside of normal hours. I’m really grateful for this, because supporting around forty physicians could really take over someone’s life.

In the blogging and activism world, though, this is something I struggle with.

If I’m not blogging, then I’m engaging other activists and chronically amazing people in conversation, following a conference, participating in chats, and more.

The weekend before Christmas was the first weekend I’ve actually fully ‘taken off’ from everything in years and years. I simply existed – we did some final holiday shopping, wrapped gifts, and I napped A LOT.

It was so nice, to be so present and focused on the here and now instead of saving the world. Don’t get me wrong – if that was my whole life, I’d be eternally bored. However, it was a nice change of pace.

It allowed me, too, to focus on some other self-care/self-love practices that I want to improve upon like taking selfies.

I even bought a selfie stick to practice this more, since it was only $5 at Target.

In the past, there hasn’t been much balance to my life. I’ve either thrown my whole heart and soul into something or sat twiddling my thumbs (usually due to a lack of access to things like transportation, etc).

December taught me that I can still be an activist, still be involved in so much, without sacrificing my everything – time with my husband, with our guinea pigs, Skyping with my sister and niblings, etc.

My promise to them is to rest more like this, to recharge so that I can be the best sister, wife, and piggie momma that I can be.

 

Terminology Tuesday: CAPS

Posted on by Grayson

CAPS stands for Cryopyrin-Associated Autoinflammatory Syndrome, but in reality, this ‘syndrome’ is actually three different syndromes:

  1. Neonatal Onset Multisystem Inflammatory Disease (NOMID)This is the rarest and most severe type of CAPS, causing infection-like symptoms like rashes and fevers in newborns where no infection is present. The disease can cause blindness, stunted growth, and chronic joint pain later in life.
  2. Muckle-Wells SyndromeSymptoms of this syndrome include fever, rash, joint pain, headaches, red eyes, and GI upset/nausea. Hearing can even be affected.
  3. Familial Cold Autoinflammatory SyndromeExposure to cold temperatures causes a rash similar to hives with this syndrome, bringing fevers, GI upset/nausea, and joint pain as well.
These conditions are genetic and are caused by a mutation in the protein cryopyrin. Diagnosis can be made via genetic testing (which isn’t always accurate), and other sometimes invasive tests like lumbar punctures.
Kineret, Ilaris, and Arcalyst, all focusing on interleukins, help to treat this series of syndromes the best.
As with other genetic issues in the periodic fever family, kidney disease can be common, especially for un- or undertreated patients.
Sources:
 
http://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Cryopyrin-Associated-Autoinflammatory-Syndrome-CAPS-Juvenile
 
http://www.capscommunity.com/caps_fact_caps_md.html
 
http://www.arthritis.org/about-arthritis/types/cryopyrin-associated-periodic-syndromes-caps/
 
http://www.nyas.org/image.axd?id=7a2e9daf-d10b-42ba-ad26-e8de00a41a28&t=633807535794630000

Medical Monday: Communicating with HCPs

Posted on by Grayson

Communicating with people who work in healthcare can be tricky. If, like me, you had little exposure to the healthcare world growing up, it can be even harder to figure out and discuss what is actually the most pertinent information.

As I’ve talked about before, making sure that there is an understanding between patient/family and provider on communication methods and the like is crucial to patient success.

When you first mean with your provider and their team, one of the first questions/issues that should be discussed is communication standards and preferences. This includes topics like:

  • Do either of you have a preference on utilizing phone calls versus MyChart to communicate non-urgent medical issues, prescription issues, and/or questions?
  • Are there any access issues for either of you with some forms of communication (i.e., no computer/internet access, hearing issues, etc)?
  • How often do you expect to communicate – only for urgent issues, every month, etc?
  • What is the best way to reach each other in the most urgent of circumstances?

Making sure that you communicate any changes – and that your physician does as well – will help keep things running smoothly.

Make sure to always ask questions and take some time to think on and/or research medication or treatment decisions.

Try to separate emotion from the conversation at hand. This will definitely be more difficult in certain situations than in others, but is important at the very least when communicating symptoms.

Let the physician know what, in your mind, the series of events or issues was that led you to seeing them. They often times don’t know fully what the complaint may have been when the appointment was set up.

Communication heavily influences our health and our willingness to get help from our care providers. It’s up to us to make sure that we’ve set ourselves up with physicians who are like-minded and can develop a good relationship with us, and vice versa.

Sources:

 http://www.heart.org/HEARTORG/Caregiver/ReachOut/CommunicatingwithHealthcareProfessionals/Communicating-with-Healthcare-Professionals_UCM_301843_Article.jsp#

 http://healthcarecomm.org/about-us/impact-of-communication-in-healthcare/

Terminology Tuesday: CRPS

Posted on by Grayson

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.

Sources:

http://www.ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/detail_reflex_sympathetic_dystrophy.htm