Exile From Hysteria

When a hysterectomy is not the ending, but a beginning.

Category: Support

Day 14: Post-op appointment

Matt was good enough to escort me to my two-week post-op visit this afternoon.

I swear I didn’t know about the pelvic exam, honey. Sorry about that. You were a trouper.

Well, the good news is that everything — from the 9-inch incision to the stuff under the sheet — looks great!

The surgeon told me to schedule an appointment four weeks from today to recheck my progress, and make a decision about my return-to-work date.

I was happy to report that I completely stopped all painkillers. I started weaning myself from the narcotic about a week ago, then conveniently developed a nasty allergy to it a couple days ago. I switched to motrin for aches, then nothing.

The doctor told me I also could stop taking birth control pills and a medicine my family doc prescribed when we thought I had a gall bladder problem (during my hysterectomy the surgeon discovered that pain actually was endometriosis that was high in my abdomen).

She also gave me the OK to start walking short distances, and to work on strengthening my endurance. I’m now allowed to bend/squat/twist as long as it feels OK to do so.

I just about cried. Finally I have permission to walk outside the confines of my front room, and to even accompany Matt on trips to Kroger. Shopping for eggs never sounded so luxurious.

Matt and I decided to celebrate with a walk through Costco. I was ecstatic because it was my first major walk since the surgery. I walked by the greeter, my heels bouncing. I strutted through the veggies, tables of folded clothes, pallets of toilet paper.

I made it all the way around to the grain aisle, before I felt the floor shift. I had to lean against the shopping cart and collect myself. Matt got me to a table in the refreshment area, then got me a soda. After a few sips, I felt myself pulling together.

Sheesh. All the bravado in the world couldn’t have prepared me for how exhausting that walk would be.

Shortly after we got home, I was visited by a wonderful colleague who brought with her a lasagna (her mother’s recipe!). It was great seeing a familiar face, and catching up on the things I’m missing at work.

In the last two weeks, Matt and I have been blessed with visits from several of our friends who have brought meals and great conversations.

We can’t thank you enough, especially in this first crucial healing period when it was nearly impossible for either of us to get out of the house.

Asking for help was difficult for Matt and myself; accepting it seemed nearly impossible.

But one by one you broke through to us, in your messages, your phone calls, your couch-side chats.

We want to thank each and every one of you for proving us wrong.

Accepting help never felt so good.

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Resurfacing

Jillian waits to go under.

Jillian waits to go under.

Exile from Hysteria is complete.

Yesterday, sometime between noon and three, a surgeon removed my uterus and cervix along with my right ovary and fallopian tube. I’m not gonna lie. The pain is intense.

ivSadly I seem to be allergic to the best painkillers. I lived with the first one for almost 18 hours before the itching became too much. Then I switched to a different drug, but too closely on the tail of the first pain killer. Those next six hours are a blur. I came out of it with a swollen allergy lip and demanding that Matt bring with him a back scratcher.

I’m not allowed anti-inflammatories, so I’m relying on ice packs and a stomach binder to keep the swelling down. This part is simply miserable.

beeperMatt has been a trouper. He stayed at the hospital waiting room, hopefully watching an electronic board post my latest status update as I moved through the various stages of surgery. The front desk gave him a restaurant-style beeper to carry that would alert him when I cleared significant hurdles, and more importantly when I was ready to go up to my hospital room.

I don’t remember much about yesterday, but I do remember Matt was there for all of it. He called my mom and brother when I came out of surgery, he met with the surgeon to get the skinny on what went down, he escorted me up to my hospital suite and fed me small pieces of a pork chop dinner.

I sense that resurfacing will take a long time.

My surgeon stopped by this morning, and spoke with me in detail about the surgery. She confirmed a long-standing suspicion that I had about endometriosis moving high in my abdomen. In recent weeks I had another doctor tell me I most likely have gall bladder issues causing the pain below my ribs. It ends up that it was endo the whole time. The surgeon was able to break it down, hopefully eliminating that problem.

Later today I was overcome with unfocused crying jags. I had read about this possibility in the discussion forums, but when the first wave came I was completely unprepared. “Are you in pain?” the nurse asked. “No. I don’t know why I am crying.”

The second jag was inspired simply by the fact that my room is in the Obstetrics wing, and that I can hear the shrill cry of newborns.

Sigh.

I fear this resurfacing will take place in phases. The road I took here was winding. How could I expect the road out would be any different?

On turning 43: Welcome to Exile

cake

Tonight I officially welcomed exile.

I marked the occasion with a small birthday cake bearing the image of an angry uterus. In a few short days, a hysterectomy will remove mine.

Somehow turning 43 was more of a milestone than I expected.

Some would say I’m starting out this new year on a bad foot. That getting a hysterectomy seven days in is just terrible form.

I disagree.

The last two months have been beyond enlightening. I’ve had tough discussions about babies with the man I love. Made gut-wrenching decisions about my future. Opened up to share my vulnerabilities with strangers. Allowed myself to accept help from friends.

Along the way, something funny happened.

I got stronger.

More than you’ll ever know.

So in a way, this hysterectomy, the twisting pain from the endometriosis, is all a blessing.

candlesWith this in mind, I thought hard about my birthday wish as Matt pushed candles in the cake.

I closed my eyes, reflected on the upcoming few days, and blew the candles out.

I’m pretty sure that wish will come true.

Sign me up!

To help out by bringing food, visiting or giving a ride, please click on this photo and sign up.

Want to bring food, visit or drive me somewhere? Click on this pic and sign up.

I’ve been searching for an etiquette book that addresses the age-old post-surgery quandary: How to be gracious when you’re doped up.

Is that even possible?

I’m guessing it’s going to be a delicate dance when I’m recovering from my hysterectomy.

With the surgery less than two weeks away, the majority of my “To Do” list is crossed off. Now, quite a few friends and family members have been asking what they can do.

Being the self-reliant woman I am, my first instinct is that I don’t need any assistance at all. But the reality is that I probably won’t be moving much the first week after I get home from the hospital.

So how can you help out? Aside from wiping the drool from my chin, here are a few ideas:

  • Visit. But ring me first. Or sign up for a time to come over. I know it sounds funny to schedule a chatfest, but I’m going to need time to amp up to the occasion. And don’t be offended if I don’t last long.
  • Bring food. Make no mistake, Matt is the master chef in our home. But for at least the first week I am home, he might be too busy caring for me to worry about roasting brussel sprouts. Plus, the second week he goes back to work and I’ll be on my own. If you think you can bring some grub, sign up for a day on the helper list. I’ll slip you some cash for your troubles.
  • Call me maybe, but definitely before you show up. I’d love to hear from you. But most likely I’ll be sleeping. Still, give it a go. And if I don’t pick up, leave a message. Or send me a text/email. I promise to get back with you once I’m feeling up to the task.

Some people have asked what they can bring. My “fun stuff” wish list is simple: chocolate and gossip magazines. The trashier the better. And if they have insider information on any of the “Housewives,” you get major points. Or as Nene would say, “Bloop!”

My life’s about to change. In a big way.

But with friends and family like you at my side, somehow it doesn’t seem so scary.

Thanks for that.

Game changer

When I think back five years to my laparoscopy surgery, and compare it to my experience today preparing for a hysterectomy … it’s obvious there’s one  big game changer: social media.

Without it I’d be a sniveling mess.

The support is instant. I can post a blog, Tweet, follow someone on Tumblr, and immediately receive feedback. I can put out a question, or fear, and within minutes hear from a handful of women who have gone through the exact same thing.

Whether sharing a similar procedure, or offering simple words of encouragement, these messages propel me.

Thinking back five years, I can’t believe the difference. While the internet obviously existed, and I could conduct basic research on my procedure, I had absolutely no one to talk to about this except my gynecologist. And she thought it was no big whoop. Being the melodramatic gal I am, I was convinced my exploratory laparoscopy was going to kill me. I sobbed, and begged my boyfriend to write me a love letter that I could bring with me into the hospital. The poor fella obliged.

I did have access to a now-defunct endometriosis-specific message board, but it was nothing compared to the instant companionship offered through various social media platforms. And now a new, comprehensive hysterectomy message board has come along that offers a true sense of belonging. HysterSisters offers space to women dealing with endometriosis, those who are pre-op, post-op, menopausal, etc. No matter where you are at on your journey, there’s a space for you and your story.

Luckily the icon for my blog (the knitted angry uterus) is pretty darn cute, and the ladies on Pinterest seem to love it. The icon may draw them in, but they stay for the … hey, someone just pinned me!

This project, this social media experiment, actually is not an experiment at all. It’s not about crunching numbers or collecting friends. These connections are about creating a community of my choosing for powerful, dynamic dialogue.

Facing a hysterectomy is a game changer in itself. Everything that I once thought was solid has shifted. My thoughts on family and children have radically changed. I am forced to confront my mortality, and prepare for enormous pain. I’d like to say I am a strong endo warrior, but these things terrify me.

But speaking with my endosisters on Twitter, Tumblr, message boards, WordPress … suddenly I know I am not alone. They will hold me up, and remain by my side throughout the entire process.

Some say social media is impersonal, but for me this is a whole new level of intimacy.