Lions and Tigers and Flares, Oh My!

Last week I had two episodes of dyspareunia (pain with intercourse, or in this case, attempted intercourse - no way do my husband and I want to make the flare worse!) and dry vulvar tissues, a symptom that I have never experienced previously. WTF. More va-jay-jay drama.

I briefly but deeply panicked, then reigned in the anxiety. I reminded myself that I have gotten over these humps before, and came up with some non-catastrophic theories about what could be happening. 

The transition from my old meds to my new meds might not be as successful as I had initially thought. My hormone levels could be off. Maybe I was more anxious about some stuff going on in my personal life than I realized. Maybe I had a low-level yeast infection. All solve-able issues.

At any rate, I already had an appointment with my rocking' neurologist lined up for this week, and I quickly made an appointment with my gynecologist, who is thankfully well-versed in chronic vulvovaginal pain.

I figured between those two helpers I would be out of the woods in no time, and returned to a state of acceptance and calm.

My husband, however, did not.

The return of even this little bit of pain quickly dug up his old trauma. In his mind, all of our progress was lost and he was on the road back to a challenging sex life, feeling powerless to help a wife who would be in constant pain, dealing with this hell while struggling to manage his emotions AND be an emotional support to said wife, who would inevitably be freaking out.

Apparently my calm was not enough to keep him calm as well.

A snuggle and a chat was in order.

I reminded him that while I can't promise anything about the future, since we don't have a time machine he can't possibly re-live the past. I reminded him that he and I both have way more resources, supports, and skills than we used to. I reminded him that we have been through much worse, that I had two doctor's appointments only days away, and that as recently as this summer I briefly had pain that turned out to be nothing but a mild yeast infection that was easily and quickly treated...and followed by plenty of awesome sex.

* * *

This episode was a great reminder that chronic pain not only affects me, but also my beloved, especially since the pain affects our sex life.

In the early years I was so focused on my own suffering - and he was so good at hiding his own - that I didn't give much thought to what he was going through. It wasn't until a few years ago, when I had finally managed to pull together some quality help and was beginning to see improvement, that he began to open up about his struggles.

Our experience highlights the need for significant others to have a treatment plan of their own. Even though they are not physically hurting, their emotional roller coaster warrants support, both from professionals and the partner in pain.

And as for lions? Well, you might remember from the Wizard of Oz that they aren't always as scary as they seem at first...

(PS: For more thoughts on dealing with flares, check out this post from pelvicpainrehab.com)

Charlie Brown Blues

I know I already posted this cartoon on Facebook, but I love it. I've been headache-y and feeling crummy this week, so a lot of curling up on the couch, which doesn't help.

This connection between posture and attitude is probably why I have found a daily yoga practice to be so supportive in managing my moods, anxieties, and fears around living with chronic pain.

If you prefer to obtain lifestyle recommendations from scientific resources rather than cartoons, you may want to check out this great Ted Talk with Amy Cuddy:

Body language affects how others see us, but it may also change how we see ourselves. Social psychologist Amy Cuddy shows how "power posing" -- standing in a posture of confidence, even when we don't feel confident -- can affect testosterone and cortisol levels in the brain, and might even have an impact on our chances for success.

Stand tall, gorgeous!

Denial Gratitude vs Genuine Gratitude

During my yatrayoni I have come across a line of thinking in which people are grateful to their illness because it supposedly changed their lives for the better. While I appreciate that they could see that good came with the bad, the concept never sat right with me, and I didn't figure out why until recently. 

This approach does not give credit where the credit is due:

to the individual, not the illness.

This "denial gratitude" denies that a challenge was put forth to the individual, denies the role of the individual in overcoming that challenge, and denies the grief and loss that are inherently part of the process.

I am absolutely NOT grateful to my vulvodynia. Nope, nope, nopity-nope. Wouldn't wish these things on anyone, and certainly not on myself.

But I am endlessly grateful for my response to my illness.

By being brave and persistent and compassionate and curious I have turned this challenge into a great learning experience. I used it as an excuse to cut the bullshit out of my life, and make choices that brought me closer and closer to happiness and meaning.

The illness didn't rescue me, I rescued myself.

Owning my power is a refreshingly strong place to be. By giving the credit to myself I do not fall into the trap of erroneously attributing good to evil, or believing that I am dependent on outside forces to fix my life. 

The fact of the matter is that pelvic pain SUCKS.

Good can come from it, but only if I make the decision that it will.

How Do Culture and Belief Affect Our Capacity to Heal?

Yesterday I was researching chronic pain and stumbled across a great article on how cultural differences affect the success of treatment outcomes. 

What?

The writers identified two main ways in which their physiotherapy training (that's physical therapy for us Americans) failed them when they went to work in a rural Zulu community in South Africa, serving women with low back pain.

For starters, the way the women used their body (farming, carrying children on their backs, carrying water and other heavy loads on their heads) was so different from how Westerners use their bodies (sitting at desks, driving) that the biomechanical and ergonomic instruction the physiotherapists had learned in school did not apply. 

Second, this population's beliefs about the origin of pain were different than those of the physiotherapists. In the Zulu community pain is "understood primarily as a whole-person illness rather than as a sign of isolated injury."  Frequently this whole person-illness is blamed on being bewitched, and traditional healers treat it by using various methods to counter the bewitchment. The suggestions made by the physiotherapists therefore did not make sense for the patients.

Another obstacle from the clash of two different belief systems is that in Zulu culture healing is received from another, and the sick person is a passive recipient; their continued health is not seen as being dependent on self-care. This led to low rates of follow-through on the self-care techniques the physiotherapists taught their patients, a crucial component of this particular model of healing.

While there were many other obstacles to successful outcomes (insufficient privacy in the clinics, not enough translators, burdensome distance for the women to travel, etc.) the two listed above were the only ones related to the training of the physiotherapists.

I found this fascinating.

Low back pain is a huge problem in the West and though poorly understood, frequently blamed on how we use our bodies. Yet these women were suffering the same pain although they used their bodies in a completely different way (one that had more respect for spinal alignment, it should be noted.)

This implies that the pain is coming from different sources, and therefore our "modern" understanding is limited. Or, the pain is coming from the same source, which has yet to be discovered.

Isn't it interesting that the difference in beliefs surrounding the source of pain made it difficult for people from one culture to effectively treat those from another?

The paper did not include any data on how effective traditional healers were vs the physiotherapists, unfortunately, which I think would be a great avenue for further research.

(Lest you think that traditional healers must have been ineffective or else these women would not have had an incentive to use physiotherapy, the writers did note that a main barrier to traditional healing was that it was considerably more expensive than the physiotherapy clinics, which I believe were state-funded.)

Regardless of which one was more effective, the existence of two different systems implies that there is more than one way to get well, which I was quite pleased with because it is in alignment with my own beliefs and experience.

This paper also demonstrates the shortcomings of allopathic (Western) medicine, which here in the multi-cultural United States is dominant. What are we missing out on by not fully incorporating so-called alternative and complementary medicine into our health care system? What are we missing out on by not developing a model of care that embraces different solutions for different people, not only based on physiology but mentality?

* * *

If you want to read the full article, you can find it here. A summary is here. Should those links ever be broken, the paper is entitled "'Our Training Left Us Unprepared' - Two Physiotherapists' Reflections After Working with Women with Low Back Pain in a Rural Zulu Community in South Africa," and can be found in the Journal of Community and Health Sciences, October 2013, Volume 8, Issue 2. 

Talk Back: “Nurses, Not Doctors, are the Future of Medicine" ?

I was hoppin' around LinkedIn today and came across this article by Dennis K. Berman, Business Editor of the Wall Street Journal, entitled "Nurses, Not Doctors, are the Future of Medicine."

If you don't feel like reading the entire (short) article, the gist is this: technological advances are taking over the role that doctors play - diagnosing and creating an appropriate treatment plan. But caring and empathy are still important parts of the healing process. Therefore, nurses - who, let's be honest, do more caring and empathy work than doctors in the allopathic world - are the future of medicine.

From the article:

Perhaps this will be a small and strange change of our technological future: A world that venerates the nurse's credo more than the doctor's intellect.

My response: I agree that empathy and caring are an important and irreplaceable part of the healing process.

However - in our current system, nurses are under pressure too, and often don't get the time required for true caring relationships to blossom. The "nurse's credo" is succumbing to the pressures of our dysfunctional health care system.

Is caring dead? No.

In my experience and opinion the reason alternative and complementary care have grown so rapidly in this country is that skills such as listening, respect for the patient's strengths, and creating a healing partnership are front and center in most of these paradigms of care, in a way that does not exist (or has been lost?) in Western medicine. These paradigms take caring and empathy to a new level, flattening the hierarchy of the allopathic medical model and positioning patients as the drivers in their own care, with health care providers performing the roles of educator, consultant and supporter.

I have a thought to share with Mr Berman.

Why not use the exciting technological advances of medicine outlined in the article to free up healthcare providers to prioritize and further develop this emerging model of "caring," the amalgamation and refinement of the skills I mentioned above?

Yes, healthcare does and should include calming nervous family members and doing the dirty work of changing sheets and dealing with blood and urine, as Mr Berman describes, and there will never be a replacement for doing that in a loving, compassionate manner. And yet - our theory of what caring is and what it can accomplish can be so much more.

Even if we place an emphasis on this new, more robust model of caring, I do not believe that doctors need leave their intellect behind. Their intellectual power has led to the creation of much of this emerging technology, technology that plays a crucial part in the improvement of health outcomes; technology that is a form of caring in and of itself.

I propose this:

If we as a nation develop and support a new paradigm of caring, and unite it with a continuously growing body of knowledge, we can create a more powerful and successful medical system than any that has come before us.

Instead of nurses being the future of medicine,

Caring is the future of medicine.