Setbacks Suck

I was planning on writing about the science behind the positive effects of gratitude today, in light of Thanksgiving. Something chipper and cheery.

Life doesn't always go to plan, eh?

Yesterday I was happily riding my bike, in jeans. Yeah!

Today, after ill-advised intercourse, even after sitting on ice packs I still hurt. I am kicking myself. It is so hard to take care of two tiny spots on my vestibule that are saying "No thank you!" When the rest of my body is screaming "HELL YEAH!!!!!"

I am right smack dab where my husband was a couple of weeks ago. I know intellectually that catastrophizing starts a domino effect, releasing stress hormones that make things worse. I know this flare doesn't mean I will go back to the bad ol' days, or that my future will remotely resemble that time.

But it is hard to be accepting and positive when I am actively in pain.

UGH.

My emotions have been all over the place this morning, but have landed on anger. This is bullshit!

I have been stomping around the house and listening to Katy Perry's "The One that Got Away" over and over again - something about that wailing "oh-wa-oh-oh-oh-oh-ne" feels right. Sing along with me!

Lordy.

* * *

incongruous PS: Happy Thanksgiving!

no post on Friday because I will be enjoying the holiday :)

Diagnosis by Triangulation: Flare Update

I wrote about a flare-up a couple of weeks ago.

After a flurry of doctors' appointments and tests with my neurologist, gynecologist and physical therapist, as far as we can tell the pain is stemming from neuromuscular aggravation and some dryness.

As is typical for my pelvic health history, it was diagnosis by triangulation - using input from multiple health professionals to rule out various possibilities - and come up with the most likely scenario.

I'm now waiting for the compounding pharmacy to make me a new batch of topical estradiol, and will resume some gentle stretching and relaxation techniques that I've learned from my PT.

My gynecologist and I use a compounding pharmacy because the standard estradiol creams use a number of unpronounceable chemical ingredients as a base. To avoid the possibility of the base making things worse, I get my estradiol in a base of my choosing, in this case, organic shea butter. It takes longer to get since the pharmacists make it to order, but it is worth the wait. Not only do I greatly reduce the risk of irritation, but if my skin does get irritated it will be much easier to find the culprit with only two ingredients to consider (estradiol and shea butter) instead of ten.

* * *

Notice how all of the actions I am taking are based on educated guesses. My neurologist, gynecologist and physical therapist all wish that they had one straight answer for me, but that is not how the human body works. 

As a result, I assembled my treatment plan using suggestions from different sources: the estradiol cream from the gynecologist, the exercises from the PT, and I'm monitoring my symptoms for my neurologist to see if any of my medications may be involved.

As my PT reminded me at our appointment this morning, the best thing I can do is proceed calmly and without catastrophizing. Hopefully in a few weeks this will pass on over and I will be feeling just ducky in no time. 

Quack, quack.

Victory Lap for Danielle!

Hey all! Let's celebrate some good news from Danielle Lavieri, which can be found on her blog at www.daniellelavieri.com. You can read all about her good news in the post "The Meaning of Remission" here.

Prepping for the Holidays

It's November, yo. Thanksgiving is but two weeks away, kicking off a month and a half long parade of winter festivities.

Do you have a plan?

I ask you this because in my humble experience poorly managed holidays can be really stressful. Amidst the whirl of activities, shopping, gift-giving, decorating, and cooking, there is the underlying cloud of expectations.

Rarely are these expectations clearly defined or articulated, but there they are, lurking in our subconscious and those of everyone around us.

Not only may you not be aware of your own hopes, but also the hopes of everyone else around you. Your boss and co-workers; your family; your friends; your community. They are pulling on you, asking for attention, and we feel compelled to respond to them even when we don't even know what they really are.

Despite (or because of?) their vague-ness, when these subconscious expectations are not met, they can lead to all sorts of tension, disappointment, and hurt feelings.

By bringing my own expectations and desires to light, and looking ahead at everything I expect of myself and what others will expect of me, I am able to sort through the mess, make adjustments, and plan for a wonderful season.

* * *

I have dealt with the holiday bluster in many ways over the years, in often a less than graceful manner. It's been tricky for me since I have chosen the option to (until recently) keep my pain disorder private; people haven't understood why I am not thrilled at the prospect of cutting down a Christmas tree or decorating cookies all afternoon. This has made things pretty dicey, and I have walked on my share of of eggshells. In the process I have repeatedly disappointed those around me.

My family likes to do Christmas to the power of ten, and my lack of enthusiasm was alternately viewed as bad behavior, not being a team player, poor attitude, and, most threatening of all, a sign that I didn't love them. 

Rising above this tangle and creating an enjoyable holiday season for me has required

• taking care of myself first
• articulating to myself what I do and do not like about the holidays
• maintaining strong boundaries.

Selfish? Oh no. It's not selfish to change my own behaviors with the goal of better participating in the group. On the contrary; it would be selfish of me to attempt to change everyone else so that they met my expectations. 

After all, my friends and family prefer to spend time with me when I am happy and grounded. Who wants to celebrate the holidays with the bat-shit crazy version of a loved one? By doing myself a favor I do everyone a favor.

(Bonus: my behavior shows those who routinely take on too much stress during the holidays that there are other options.)

* * *

It's been a rough ride and I have ruffled a lot of feathers, but things have smoothed out. By knowing what my expectations and boundaries are, I keep my head above the roiling emotional waters swirling around me.

Over time, my family has slowly come to accept that I appreciate keeping things light and simple, and I have seen people relax their own high standards in response. 

We are more comfortable with having people celebrate in different ways (me not decorating cookies does not preclude someone else from doing the same) while maintaining the most important tradition: loving each other.

All the work of sticking to my guns has been worth it. By focusing on what brings me the most joy, and minimizing or avoiding the stuff I find draining, I make it though December without turning into a Grinch or a cynical burnt-out shell. When the New Year comes along I am happy to greet it.

And that makes for the Happiest Holidays of all.

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)