Tuesday, October 24, 2017

Forging New Friendships


It all started with a simple suggestion ...

We should all get together sometime in Vegas.

I had met Monica and Andrea in an online support group for wives and girlfriends of quadriplegics. Their husbands, Glen and Chad, are both high level quads like Jeff. The also both have one daughter, and all three of our girls are only 8 months apart in age.

The similarities are clear. So it's not surprising that the three of us - me, Monica, and Andrea - all struck up a friendship. Our girls started writing letters to one another. They even had video chats so they could talk to one another face to face.

And I would chat with my new friends over Facebook messenger.

That's when the idea of meeting in person first came up.

Here's the actual conversation:

Monica: I seriously was telling Glen last night that we need to plan a group trip to Vegas. Kristen, I know you said you guys are not thrilled to fly and we've never been to Vegas! Who's in?

Andrea: We have been to Vegas. I'd go again if I didn't have to endure walking the strip.

Kristen: We would LOVE to have you come visit us!

And so the planning began.

Before long, flight reservations were made and hotel rooms were booked.

And the excitement levels began to rise.

Both visiting families - one from Pennsylvania, one from Minnesota - flew out to Vegas several days ahead of when we all planned to gather at our home. Monica, Glen, and Elaina headed to Yosemite while Andrea, Chad, and Mari explored the Grand Canyon. When they headed back to Vegas, we realized we would all be available the evening before we planned to get together, so we decided to have dinner together at the hotel they were staying at, which was just a few miles from our home.

***

Jeff, Evie, and I waited near the cafe at the hotel. We were all smiles and jitters. We waited for our new friends to come down from their hotel rooms and meet them in person for the first time.

"Which way will the come from?" Evie kept asking.

"I'm not sure, Sweetie," I answered. "Just be on the lookout for two power chairs."

And soon enough, through the throngs of people, we could just make out those chairs - with two men sitting in them - coming toward us. Their wives walked on either side of them, and a few steps ahead were two little girls holding hands. They were making their way toward us.

Evie was like a race horse. My hands on her shoulders were the gates holding her back. She was trembling with excitement.

Finally, when the girls were close enough, I let go, and Evie flew to them. The moms followed suit with hugs all around, and the dads all did their quad nods to one another.

And there, in the crowded casino of a Las Vegas hotel, the bonds of a unique friendship were forged. There must have been a million eyes on us that evening. Three quadriplegics in power wheelchairs pulled up to a long table on the cafe patio. Three wives helping their husbands to varying degrees with their dinner and drinks. Three little girls sipping root beer and chocolate milk, giggling their way through their meals.

It was a perfect way to kickstart our friendship.





***

The next day, in the early afternoon, we all met up again - this time in our home where we could relax and hang out away from prying eyes and loud background noise.

The girls immediately stuck to one another like glue, and seemed to move around the house as a unit. They occupied themselves with such things as tea parties, karaoke, splashing in the spa, painting toenails, and sneaking snacks. Suffice to say they were in heaven.

The couples spent their time getting to know one another. We compared wheelchairs and gadgets that have become part of our everyday lives. The guys swapped injury stories with nods of understanding. And thanks to Glen, we got to hear some harrowing post-injury injury stories - as if the spinal cord injury weren't bad enough!

Monica and Andrea shared what it was like to fall in love with their husbands, as both women met their husbands many years after they were injured. I shared what it was like to go through the trauma of the injury with Jeff and the way our life abruptly changed.

The topics ranged from funny to solemn - from shocking to serious.

As we talked, I watched how these women moved around their husbands. How they helped them with things like taking a sip of a drink or putting food in their mouths, or helping them put on a sweater. How they did it all without missing a beat in the conversation. And I realized that this is what I must look like when I'm helping Jeff. It was my first time seeing the dance from the outside - seeing how husband and wife move together as a synchronized unit.

It's something I'm glad I got to see from a new perspective.

We gushed about the lights of our lives - our daughters. We talked about parenting issues that every parent can relate to. And we talked about parenting issues that only quad parents can relate to.

We took time to snap some photos of this incredible experience.

Monica even brought shirts for the moms and the girls. Here's what they say:

Here's to strong women
May we know them
May we be them
May we raise them





It was both relaxing and energetic at the same time. Our conversations just flowed. Nothing was forced.

We were immersed in an environment where no one stood out. We all just blended in. And believe me, blending in as a quadriplegic family is something none of us were used to. But all of us welcomed.

Later in the evening, we were treated to a visit by yet another quad couple - Claire and Kenny (yes, THAT Kenny from broken wheelchair fame!) Claire is also part of our online support group, and knew about our plans to get together. She and her fiance Kenny happened to be in Vegas for a conference at the very same time as the other families! Their arrival was the icing on the cake.


Our house was so full! Full of hugs and laughter. Full of questions and answers. Full of sharing and learning.

Full of understanding.


Full of so much understanding, in fact, that when Jeff's body was overly tired from all the talking, our friends gladly moved the conversation into our bedroom after I got Jeff transferred back to bed. If there's any group of people who know that sometimes you just need to get out of your chair and into bed, it's certainly this group.



A little while later, we hugged and said our goodbyes to Claire and Kenny. Then Monica, Glen, Andrea, and Chad headed back to their hotel while the girls embarked on their long-awaited sleepover.

I went to bed that night with my head spinning (which may or may not have had something to do with red wine) wondering how in the world I was going to capture all of this in a blog post.

How do you write about an experience like this? A gathering of people who understand your life - not just people who sympathize with you, but people who truly get you. For the first time, we were able to sit down and see glimpses - sometimes whole reflections - of ourselves and our lives in our new friends. How do you summarize what that's like and what that means to your family?

***

The next morning, the girls were up early, eager to spend more time together. They were in the spa by 9:30, unfazed by the windy chill.


Afterward, they opened friendship necklaces and gathered close to see how the three pieces fit together.



Before we knew it, it was time to say goodbye. Parents arrived, bags were packed, and hugs were given all around. Sincere words of how we really want to get together again were spoken.

We said our farewells with sad smiles and happy hearts.

Later that afternoon, as Evie was nursing a slumber party hangover, she and I were resting on the bed.

"Did you have fun with your friends?" I asked.

"SO MUCH FUN."

"Did you guys talk about how all of your dads are paralyzed?"

"No."

That's when I realized my question was rather silly. Why would they talk about it? For the first time, they were in an environment where they didn't have to field questions like 'What's wrong with your dad?' and 'Why is he in a wheelchair?' They didn't have to explain what the word paralyzed means.

They could simply be themselves.

"Do you think you will be friends with them for a long time?"

"A looooong time. Longer than any of my other friends."

"Really? Why is that?"

"Because their dads are like Daddy. And they know what it's like."

And with those 5 words, I got my answer to how I was going to sum up this entire experience - my answer to why it's important for families like ours to meet and connect and forge bonds.

They know what it's like.

Yes, they sure do.

Tuesday, September 26, 2017

The Toll of Constant Caregiving: Sleep Deprivation

Today I'm writing about something that's hard for me to admit.

I'm overwhelmed.


I am the glue that holds my family together. I provide all the care for my paralyzed husband. I engage in all of the hands-on, physical aspects of parenting our daughter. I work part time. I maintain our home. I manage our finances and all of the administrative aspects of my husband's disability. And now and then I work in some time for myself so I don't lose myself in the acts of providing for everyone else.

And most of the time I do everything without batting an eye.

Most days I am a machine.

But lately my machine hasn't been performing optimally.

For the last 7 months, Jeff and I have not been sleeping through the night. Not one night in more than half a year have we gone to bed without waking up at least once to address his needs. Most of the time we're up two to three times. Sometimes it's just for 5 or 10 minutes. Other times it's for an hour or more.

And while I don't know precisely how much lost sleep time we've accumulated in the last 7 months, it's safe to say we aren't sleeping enough.

Getting adequate sleep is important for both of us. But Jeff and I agree that it's essential for me since I need both the physical and mental stamina to get us through each day.

Lately I've felt like I did way back when our daughter was born. I think any new parent will agree that the first couple months of parenting are utterly exhausting. And much of that deflated feeling is due to lack of adequate sleep. According to a study titled "Interrupted Sleep Can Be As Harmful As No Sleep," researchers found that interrupted sleep is the equivalent of no more than four consecutive hours of sleep. And that a lack of adequate sleep can result in, among other things, "compromised cognitive abilities."

And when your cognitive ability is compromised, mistakes can be made.


A few weeks ago, I almost made a serious mistake in Jeff's medication. And the only reason I avoided the mistake is because I got lucky.

Since we'd been waking up so often in the middle of the night, I decided to try to make our morning routine go a little quicker by pre-loading his morning medication in a small cup I kept on the bathroom counter. While I already have his daily medication sorted into a pill organizer, I always keep his pain medication separate. But I had been adding in the pain medication to the pre-loaded cup so I could dump everything in his mouth all at once.

Only I wasn't being consistent with adding the pain medication. Sometimes he'd need a pain pill in the middle of the night, which meant he wouldn't need it with his morning meds. So my system of adding the pain pill to the daily meds wasn't set in stone.

One morning, after a long sleepless night, I was on autopilot. I grabbed his pre-loaded cup of meds, added in a pain pill, and put them all in his mouth.

As soon as he swallowed them, my eyes flew open. I immediately felt sick, and I started trembling.

"Oh my god." My voice was raspy and shaking. "I might have just given you two pain pills at once."

I put my hands over my mouth and started crying. My head was spinning, trying desperately to recall if there was already a pain pill mixed in with his pre-loaded meds.

The pain medication Jeff takes is strong and potent. He typically takes two each day, about 8 hours apart.

And I may have just given him a double dose.

The next four hours of our life were filled with an incredible amount of anxiety. We researched information on overdoses. We thought about calling 911. I rocked back and forth on a stool next to Jeff's bed - the guilt eating away at me.

Finally after four hours passed, we determined that I hadn't in fact given him a double dose. He didn't feel any different than he did with just one pill.

Still, I know that we are extremely lucky this scenario ended the way it did. It so easily could have ended differently.

And if all this wasn't bad enough, a few days ago we had to cancel a morning appointment with a specialist that we'd been trying to secure for the last month for Jeff's stomach pain, because I once again hadn't gotten enough rest. And this time I had an anxiety attack on top of it, knowing that there was no way I could muster up the physical, mental, and emotional strength to get myself ready, our daughter off to school, and Jeff dressed, fed, transferred, in the van, and to the doctor all by 9 am.

It was all too much.

I had been continuing with the constant, demanding pace of this life, but I had been running on the fumes of my reserve tank.

Caregivers can't provide proper care on an empty tank.


So what do we do? Jeff and I have been talking about ways to get more sleep. For starters, we're getting to bed earlier. That means pushing pretty much everything we do after dinner up a half hour. But if that's what it takes, that's what we'll do.

And a dear friend of mine, who also happens to be my boss, recommended a few minutes of mindful meditation and reflection each day to help calm the constant buzz of my brain.

I've been overwhelmed before. And I always find a way to rebalance. But I've never had such a close call with a serious error, nor been the reason we couldn't make a medical appointment.

So I'm working on making changes.

I'm taking cues from recent events, and I'm in the midst of redistributing the weights right now.

Sunday, August 20, 2017

Our Anniversary - Reflecting and Rebuilding

Today is our anniversary.

Twelve years ago, Jeff and I got all dressed up, hopped on a yacht in Newport Harbor, and invited some family and friends to celebrate our commitment to one another.

I offer you my solemn vow to be your faithful partner in sickness and in health, in good times, and in bad, in joy as well as in sorrow. ... I promise to cherish you, honor you, and to respect you for as long as we both shall live.



Eight years after we said these vows, my husband was paralyzed from the neck down while diving into the ocean.

And now four years later, we are still rebuilding our lives.

When I think about the phrase 'faithful partner in sickness and in health,' I think about what that meant to me 12 years ago. I am embarrassed to say that back then, I thought it meant something like nursing my partner through the flu. It definitely didn't mean anything close to what it means to me today.

I am my husband's caregiver. As a high level quadriplegic on a ventilator, he requires 24-hour care and assistance. While technology has been instrumental in allowing him independence in some capacity, the truth is that he still needs help with almost every single task throughout any given day. And it's my job to provide that assistance.

As a spousal caregiver I often come across the question of "How do you separate being a spouse and being a caregiver?" This is a big topic in the spousal support groups I belong to. One thing I've learned in being a part of these groups is that no one's situation is exactly the same. And everyone has to find what works for them and their partner. I learn from and respect each and every approach. Because figuring out what works and implementing a caregiving plan is a difficult and complex task.

But for me, when asked how I separate being a spouse and being a caregiver to my husband, my answer is simple:

I don't.

Because I'm not either a wife or a caregiver.

I am a wife and a caregiver.

I'm not one or the other.

I am both at the same time. Always.

Because when I'm cleaning Jeff's trach, we're talking about our daughter's school. I have my headlamp on and I'm gloved up, and the rolling table set up next to his bed is stacked with gauze, saline, Q tips, and ointment. And my husband and I are talking about setting up a weekly homework schedule for our third grader.

Because when I start his breathing treatments in the morning, we're already talking about what we'll do for dinner that evening.

Because when I'm transferring him from his wheelchair back into bed and trying to get the sling out from under his body, he is being silly and making me laugh so hard that it takes me three tries to successfully get the sling out.

Simply put, me being my husband's caregiver works for us.

"I truly don't think I could get through this with anyone but you." 


My husband recently said these words to me after we'd been through some difficult days together. And it's one of the best compliments I've ever received.

Jeff and I have developed a bond over the last four years that is hard for me to accurately put into words. It is built on deep trust and respect for one another that developed as a direct result of the trauma we went through as a couple when he was injured.

His injury caused a tsunami that forever changed the landscape of our life. And we are fortunate that we've been able to hang on to one another as the waters receded. We've worked together to make sense of the leftover chaos and have begun to build our life on top of the wreckage.

But it hasn't been all fortune and luck that have gotten us to where we are.

It's been a lot of hard work and sleepless nights. And an endless amount of grace. We've had to learn to allow one another space to be angry with the turn our life has taken without taking it personally. We've had to accept that each one of us copes in our own way and we've learned to support one another within those parameters. We've consoled one another, we've delivered more pep talks that I can count, and we've both taken turns being the bad cop when it was time for the pity party to end.

Our life hasn't turned out the way I imagined it would on this day twelve years ago when we said our "I dos." Back then, my idea for our future was so simple and idyllic. It involved working, raising our daughter, retiring, then traveling. Instead, I feel like we boarded a rocket, were launched into space, and crash-landed on a distant planet.

But it turns out this planet is liveable. Yes, there's some harsh terrain and surprises waiting to challenge us, but there's also rich soil where we can plant some new dreams and watch them grow.

I wouldn't want to navigate this new world with anyone but this guy.

Tuesday, August 15, 2017

"My Dad is Paraliced"

As summer vacation was winding down, Jeff and I would talk to Evie about her upcoming school year. We asked her what she was most excited about ("Getting to play on the big playground this year!"), we asked her which of her friends she couldn't wait to see ("All of them!"), and what she was looking forward to learning about ("Art!").

We were doing our parenting best to build her up for the coming school year because we had a bit of a rough exit last year.

Jeff had been in the hospital for a week last May. Evie stood with her grandparents and watched as an ambulance took her sick Dad and her worried Mom to the hospital. It was a very anxious time for all of us, and Evie's anxiety spilled over into her school days. She suddenly didn't want to get on the bus - something she'd always handled so well. And the first half hour of school was spent in tears with friends rallying around her.

We were hoping for a better start to the new school year.

A few nights before the first day, I was putting Evie to bed, and she said to me, "I don't think I want to tell my new class this year that Daddy is paralyzed."

I was caught off guard. "Why not?" I asked.

She shrugged her shoulders in an I don't know gesture. "I just don't," she said quietly.

"That's okay, Sweetheart. You don't need to," I told her gently. "But sometimes you might have to talk about it - or at least mention it," I continued. I gave her an example. "What if your class is talking about the jobs your parents have? That might be a time that you would explain that your dad is disabled and your mom takes care of him."

She nodded.

"And remember, you don't have to tell everyone the whole story," I reminded her. Because she has. All in about 20 seconds, in one breath, talking 800 miles per hour, starting with "One day we went to the beach," and ending with "and now my dad can only move his head." Yikes. Talk about overwhelming - for her and the person on the receiving end of all that.

We said goodnight and left the topic there.

A couple days later, she and I went to the school and met her teacher, and an opportunity arose to let her teacher know about our special circumstances. As we were leaving the classroom, the teacher stopped us and asked if I would be able to volunteer in the classroom or if I would be busy during the day. I seized the opportunity.

"Evie's dad is a quadriplegic," I said. "He's paralyzed from the neck down, and I am his caregiver. So as much as I'd love to come in regularly, I won't be able to." The teacher understood. Then Evie piped up and said that maybe her dad could come in one day like he did for the parent teacher conference last year. The teacher smiled and said she looked forward to meeting him.

We said our goodbyes and headed toward the exit. Evie was relieved that her teacher now knew about her paralyzed dad and that it wasn't a big deal.

Fast forward to yesterday - the first day of school.

Evie came home, announced she'd had a GREAT day, answered our questions, then began unpacking her backpack. She pulled out a folder stuffed with flyers for parents to read and sign. Then she brought out a crumpled up piece of paper that had been re-flattened out, and said, "Oh, today I told my class that Daddy's paralyzed."

"Oh wow," said Jeff.

"You did?" I asked with surprise. "What did you say?"

"I wrote it on a piece of paper," she explained. "We all had to write three things about us, then we crumpled up the papers and played snowball fight."

The good ol' getting-to-know you activity.

I looked at the paper she brought home. And just beneath "I love rainbows and unicorns!" and "My favorite stuffed animal is Uni," were the words, "My dad is paraliced."



She just smiled at us from ear to ear.

Later that evening I asked her what some of the other kids wrote on their papers.

"Things like 'I have a dog' or what their favorite color is," she said. Then she paused. "No one wrote something like me."

"How did you feel about telling your class?" I asked.

She gave me the thumbs sideways gesture.

"Kind of in between," she said. "I didn't know we were going to read them out loud. I thought it was just for the teacher."

"Did anyone ask questions?"

"Yep, one person said 'What does paralyzed mean?" and I told him it means you can't move anything."

I told her she did a great job.

I told her that I know talking about Daddy's injury is sometimes uncomfortable, but it's never anything to be ashamed of or embarrassed about.

I reminded her that before Daddy's accident, we didn't know anyone who was paralyzed. We didn't know anyone who used a wheelchair. And that when her classmates ask her questions, it's probably because they've never met anyone who is paralyzed either. And they're curious. And when we answer their questions, we help them understand a little about what it's like to live our life.

I told her I was proud of her.

* * * * *

Jeff and I - like so many other parents - want to prepare our child the best way we can for life. We want to use our experiences to help her with hers.

But when it comes to living with paralysis, all three of us - Jeff, myself, and Evie - all experience it from a different perspective.

Jeff and I don't know what it's like to have a paralyzed dad. But Evie does. And this is one area where we have to let her take the lead.

And she may not be able to see it now, but she teaches us something new every day.


Thursday, July 27, 2017

Four Years

"If something happens to me..."


Like most couples, Jeff and I had said this to one another on occasion - back before our lives were changed. This phrase was usually followed by us expressing our wishes for the other partner to carry on in life - together with our daughter - should some kind of tragedy befall one of us.

Every time we talked about this subject, the words "If something happens to me" were code for: "If I die."

Never once did they mean, "If I am paralyzed from the neck down and you have to take care of me for the rest of our lives."

Never.

Because that scenario was unfathomable.

And yet, that's the exact "something" that happened to us.

July 27


I snapped this photo one hour before Jeff's injury. It is the last picture we have of him as an able-bodied man.

This date comes around every year, and every year I feel it looming as it approaches.

I wish I could treat it like any other day. But I just can't. Not yet.

Yesterday morning, I woke up wanting nothing to do with this life. Perhaps it was my unconscious way of acknowledging the upcoming anniversary of the day our life abruptly changed. I was struggling and Jeff could see it. I was going through the motions with no heart behind it. I don't usually go about the day this way, so I apologized with tears in my eyes.

"I wish I could just say, 'I don't feel like doing this today,'" I told my husband. But neither one of us gets the luxury of saying - or doing - that.

And so like all tough days, we simply pushed forward.

* * * * *

July 27 - the day our "something" happened - yet not the thing we'd anticipated or feared.

I suppose if Jeff had died that day (he would have if not for our friends' help), in my effort to make sense of it all, I would have thought and said something like, "He wouldn't have wanted to live that way."

In fact, I've heard that phrase from other people - friends and strangers alike - who have said to us, "Wow, I wouldn't want to live like that."

No shit.

No one wants to live like that.

There have been times - many days in fact - over the last four years that Jeff has wished he had in fact died that day because he doesn't want to live the rest of his life as a ventilator-dependent quadriplegic. Because witnessing the mental and physical toll his injury has laid upon his family is beyond difficult. Seeing his wife struggle with more duties than she can handle and hearing his daughter admit that she's sometimes embarrassed when she has to tell her whole class that her dad is paralyzed and in a wheelchair is absolutely crushing.

But there have been many, many more days that he's glad he survived.

I'm glad too.

Even though caring for my husband 24/7 is the absolute hardest thing I have ever done in life, I am grateful he's here for the caring. And I mean that both ways. I'm thankful he's here for me to take care of, and I'm thankful he's here to take care of me.

The last several months have been a pretty difficult stretch for us. Jeff had three surgeries within a four-month span, and the journey to get back to the new normal we'd established has been unexpectedly challenging.

But we both agree we're on the upswing now.


Over the last few weeks, Jeff and I have talked about how much we've grown in the last four years (heck, the last four months). We've become closer as a couple. We've become crazy good at troubleshooting. And our knowledge of living life with a spinal cord injury continues to expand.

When it comes to living the life we do - making room for paralysis - our approach is pretty simple.

We don't try to overcome it.

We don't try to pretend it doesn't affect our daily lives.

We simply are learning to live with it. We are continually learning.

And as for this day, what I'd like most is to just get through it. Get to the end of the day where everyone is asleep and safe, so I can let out a sigh of relief.

That's the goal for today.

* * * * *

Every year, on July 27, I write a post to mark where we are on this journey. Below are the links:

Year 1

Year 2

Year 3

Monday, July 10, 2017

How to Advocate Like a Boss - Part 2

To get caught up, be sure to check out Part 1 of this series.

Now that Jeff had finally been admitted, we had one hurdle crossed. But we still had the daunting task of figuring out what was causing these random, frequent autonomic dysreflexia episodes - and more importantly, we had to educate doctors and other staff on the urgency of our situation.

After getting settled into our room, we met with the hospitalist - we’ll call him Dr. Y. He was Jeff’s main doctor during the hospital stay, and everything flowed through him. If Jeff needed medication, Dr. Y had to approve it. If we wanted to see a specialist, Dr. Y would be the one to okay it. Dr. Y was our lifeline to getting things done.

And he had absolutely no clue what autonomic dysreflexia was.

So we explained. I handed him the printout I’d brought. He looked at it, but not long enough to take it in (unless he was a speed reader). He poked around Jeff’s stomach and asked where it hurt (ugh - THAT question again). He didn’t seem to think there was much urgency to Jeff’s current condition - or at least he didn’t give us that impression. He hinted that the antibiotics Jeff had been started on in the ER for a urinary tract infection should clear up this whole blood pressure issue. He said he would see us again tomorrow, and he left.

The next day we were met with a slew of specialists - a neurologist, an infectious disease specialist, and a general surgeon. We explained AD to every one of them. At this point, we pretty much had our elevator speech memorized - we had to recite it so often.

The neurologist ordered a brain scan. The infectious disease doctor ordered blood work. And the surgeon ordered a more in-depth scan of Jeff’s gallbladder to test if it was functioning normally. This last test is the one we were most interested in since Jeff and I were pretty sure the gallbladder was what was causing all this.

The brain scan and the bloodwork came back normal. But the gallbladder scan did not.

When the surgeon came in to tell us the results of the scan, she said Jeff’s gallbladder was not functioning optimally.

So you can imagine our surprise at what she said next:

“But there’s not an indication that the gallbladder needs to be removed. There’s no sign of infection. And while it’s not functioning optimally, it’s still within the limits of normal function.”

WHAT?

“We’re going to continue treating you with antibiotics for a urinary tract infection, as that’s what seems to be the cause of the issues you’re having.”

Clearly she’d just had a big swig of the Cool-Aid Dr. Y was serving up to the specialists behind the scenes.

Jeff and I were devastated. He’d already been on antibiotics for several days at this point, and his AD episodes were not decreasing. While the medicine may have been working on the UTI, it was not working on what was causing the AD. We felt like the only two people in the entire hospital that could see this.

Later that evening, about 30 minutes after we had dinner, Jeff had a whopping AD episode. His entire torso and neck erupted in red blotchy patches and his blood pressure sky rocketed to 170/120.

I raised the head of his bed as high as it would go. Usually this makes the BP go down within a few minutes. But this time it didn’t. I monitored his BP every 2 minutes. And after about 10 minutes had passed, it wasn’t going below 160/100. A nurse was in the room with us watching the whole thing unfold. I honestly think she had no idea what to do.

Jeff looked at me and said, “Get the paste.”

I quickly retrieved the nitro paste I kept in my bag for urgent AD situations like this one, and I applied an inch to his forehead. By the time I took his next BP reading, it had gone down to 150/100.

It was working.

That’s when the nurse finally spoke.

"Does the doctor know you have this medicine bedside and are using it?"

I turned to her and said, "I don't know if the doctor knows, but I'm happy to talk to him about it once my husband is stable. Right now, this medicine is saving my husband's life.”

To be fair, the nurse was not rude in any way when she asked her question. She was just following hospital procedure. But again, she clearly wasn’t understanding that an AD episode like this required quick and efficient action.

“We don’t mean to be disrespectful,” I explained. “But the truth is that in the time it would take you to obtain this medicine and apply it, my husband could have a seizure or a stroke. This is what we’ve been dealing with at home for the past two weeks. And this is why we’re here. My husband's body can't endure much more of this. We need help in figuring out what's causing it.”

During our talk, Jeff’s BP trickled back down to a normal level.

I wiped the paste off his head and got him situated in the bed. The nurse just stared at him as if the doors of Wonderland had been opened before her. She shook her head slowly and said. “I’ve never seen anything like that.”

******

Dr. Y bounded into our room that night at 10 pm. If he had learned about our earlier “illegal” use of the nitro paste, he made no indication. Instead he asked if Jeff was feeling better and commented that his blood pressure “looked good.” And it was - right at that moment. But we made sure to tell him about the multiple AD episodes Jeff had had that day when his blood pressure wasn’t so good.

He then started talking about sending Jeff home on antibiotics.

And that’s when we revved the engine of the advocacy bulldozer we came in on.

We politely but firmly refused to be sent home. We were not at all confident that the source of the AD had been identified and properly treated.

We asked to speak with the surgeon again. Or a different surgeon. It didn’t matter. But we needed to address the gallbladder issue again.

And we also wanted to speak with a urologist. Knowing that Jeff had bladder stones, we wanted to talk to a doctor about those being a potential cause of the AD.

We were at the end of day 4 and felt like we still hadn’t made much progress.

It was obvious that wasn't the direction Dr. Y wanted to take this, but he agreed and left.

******

In the late morning of day 5, a new surgeon entered Jeff’s room for a follow-up consultation. We started by explaining what was going on. We discussed AD. I gave him the handout and we waited in silence while he read it. He hadn’t encountered AD before, but after reading the handout he said it made sense to him.

Then Jeff asked him this: “If I wasn’t injured and could feel what was going on with my body, based on the results of the gallbladder scan, do you think my gallbladder would be causing me pain?”

The surgeon looked at him and said simply, “Yes. You would very likely be having intermittent pain.”

Jeff and I said - at the same time - “Then that’s what’s causing the AD.”

Jeff reasoned with the surgeon further. “I didn’t come in here looking to have surgery. But my wife and I strongly feel that the gallbladder is the cause of my problems and needs to come out. We deal with the side effects of my injury every day, and we know my body’s reactions very well. We know there’s something going on inside. Surgery is the last thing I want, but in this case, we think it’s warranted.”

The surgeon listened, nodded his head, and calmly said, “Yeah. I agree.”

After a little more discussion, and a confirmation that the surgery would take place the next day, the surgeon left the room and Jeff and I melted into a puddle of happy tears. We finally felt like we were making progress.

About 30 minutes after the consultation with the surgeon, Dr. Y walked into Jeff’s room talking on his cell phone. He was saying, “I’m going to let the patient’s wife talk to you to explain the details of her husband’s condition.”

Evidently this was our consultation with the urologist.

I took Dr. Y’s phone and was met by a calm voice on the other end who told me he was in his car on the way to another hospital to perform an emergency procedure. I had 10 minutes.

And I used every minute of the 10 I was given. I explained my husband’s condition and our concern over multiple autonomic dysreflexia episodes. I explained that we were pretty sure it was his gallbladder, but that we were also concerned that his bladder stones could be causing this as well. We had a very professional, calm discussion. The urologist was not familiar with AD, but he clearly grasped the concept. And near the end of our conversation said that “while bladder stones are not usually considered an emergency situation, if they are causing autonomic dysreflexia in a quadriplegic, then I would classify it as a reason for emergency removal.”

I finally felt like someone was not only listening to us, but was also understanding the urgent nature of what was happening in my husband’s body. Plus, I got a good vibe from this doctor when he pronounced the phrase “autonomic dysreflexia” back to me perfectly. Most doctors who aren’t familiar with it can’t do this without John Travolta-ing it.

We ended our conversation by agreeing that if Jeff was still having AD after the gallbladder removal, we would move on to the bladder stones. The doctor then complimented me on my thorough knowledge of spinal cord injury related issues, and I thanked him for his willingness to listen and his understanding. We hung up and I handed the phone back to Dr. Y.

So within the span of 30 minutes, we not only had a plan, we also had a back-up plan.

Can I get a hallelujah.

******

The next morning rolled around and Jeff was taken in for surgery. I sat by myself in an empty room, anxiously waiting for the surgeon to come tell me everything went well.

And she did about 90 minutes later. She said there were a “ton of gallstones” in his gallbladder, and was hopeful that this was indeed the cause of the AD.

And guess what…

It was.

Once the surgery was done, the AD disappeared.

After days and days and more days of AD happening over and over again, we finally had a break. My poor husband finally got some decent sleep. And this exhausted wife finally got a little bit of pressure relief on those frayed nerves of hers.

Now all we needed was home.

****

Coming soon - the conclusion to the How to Advocate Like a Boss series.


Still trying to figure out what's going on.


Jeff goofing around. He made me take this picture of him. I was laughing in the corner of the room the whole time.

Managing a few smiles before surgery.

I am one of the few people who walks around the hospital with an Ambu bag attached to my backpack.


Tuesday, June 27, 2017

How Crocheting Helped Me Rebalance My Life

I’ve always been a little bit crafty. I love creating things with my hands, and I especially love crocheting. I’ve made countless blankets and beanies (and even a bikini!) over the years. While I’ve also enjoyed things like quilting, scrapbooking, and embroidery, there’s just something about a hook and yarn that speaks directly to my soul.

But in 2013, all of my crafting came to a halt. While at the beach with my family, my husband Jeff dove into the ocean and broke his neck. He was instantly paralyzed from the neck down - and in that instant, our lives were forever changed. He became a quadriplegic and I became a caregiver. We were 39 and 37 years old with a 4-year-old daughter.

He spent 7 months in a rehabilitation hospital where together we learned the beginnings of facing life with a spinal cord injury. When he came home, I quit my job to take care of him. We left an environment where a slew of nurses split his care in shifts. Now at home, it was just me.

I was consumed with caregiving.

Though it took a while, we did eventually get into a routine. But during the first year, I didn’t even think about picking up a craft. I just couldn’t. We moved twice in five months - and again a year after that. I ended up donating a big chunk of my crafting supplies at this point. The rest - my sewing machine, a few scraps of fabric, and my beloved crochet hooks, knitting needles, and skeins of yarn - were hastily packed into cardboard boxes and stored in a garage. My world now revolved around things like ventilators, catheters, and transfers, and my hobbies were relegated to a distant back burner.

Yet creativity still called to me. I remember trying to hand embroider a decorative E on fabric for our daughter Evie, but the time-consuming nature of finding the right colors and ironing the fabric to perfection, and transferring the pattern to the fabric were simply too much. Tasks I used to find rewarding and relaxing were now frustrating and stressful since they were competing with my demanding schedule as a caregiver.

About two years into my husband’s injury, I found myself at a local craft store with our daughter choosing some summer projects for her. I used to spend what felt like half my waking hours in stores like this in my old life. Now being back in one after such a long absence was overwhelming. We spent time in the kid craft aisles and filled our basket with projects that were intended to last the whole summer, but in reality would last just a week or two. And just before we checked out, I felt that pull. That same one I always felt in these stores.

“Let’s go look at the yarn,” I whispered to Evie. She nodded and followed. I hadn’t even been in this particular store before, yet I instinctively knew where the yarn would be. And when I turned down the aisle and was engulfed by the colorful fibers on either side, I felt something spark inside me that I hadn’t felt in a long time.

I picked up two skeins of glittery yarn with the intention of making myself a scarf. Nothing fancy. No intricate pattern needed - just a simple stitch I knew by heart. I left the store with that excited feeling every crafter knows when a new project is on the horizon.

And do you know how long it took me to finish that project?

TWO YEARS.

Yes, you read that right. Two years for a simple scarf that would have taken me a few days to complete in my old life.

But I don’t have my old life anymore - I have my new one now. And I’ve learned to look at the role crafting plays in my new life in a new way.

I’ve learned that small projects that I can pick up and put down at a moment’s notice are the way to go. Long gone are the days of making intricate quilts with custom embroidery. I no longer have the space nor the chunk of time to dedicate to those projects. What I have now are snippets. Do I miss those long, free hours of crafting at will? Of course. But instead of being resentful for what I no longer have, I’ve learned to be grateful for the time slots available to me now. I’ve learned to work within the snippets.

And crocheting small, meaningful projects within those snippets has given me a sense of joy. They help restore the balance in my life when it’s overrun by the constant call of caregiving. They help bring a little bit of “me time” to my life. Not every day, of course. Sometimes not even every week. But when I need them, they’re there. And I’ve been working on incorporating them into my life a little more. They’re the balancing force I need.

And as for my once depleted yarn stash, I’m happy to say I now have a bin dedicated to yarn in my office closet. And guess what … I think I’m going to need another bin soon.

Now that’s a good feeling.

Working on the Two-Year Scarf in the car.
Me finally wearing the Two-Year Scarf - and Jeff donning his go-to beanie I made for him over a decade ago.
Me and Jeff sporting the Star Wars beanies I made for Halloween.

My latest project - a summer vest!

My current WIP - mermaid gloves for Evie.


*** If you are a caregiver in any capacity or have experienced a monumental shift in your life, I encourage you to pick up an old hobby - or discover a new one - to help find the balance you need. If you think you don’t have time, try it even for a few minutes. Sometimes that’s all it takes. Don’t be afraid to work within the snippets.  

xoxo

Monday, June 12, 2017

How to Advocate Like a Boss - Part 1

Autonomic dysreflexia is a syndrome in which there is a sudden onset of excessively high blood pressure. It is more common in people with spinal cord injuries at T6 or above. --WebMD

Autonomic dysreflexia is an important clinical diagnosis that requires prompt treatment to avoid devastating complications. – “Autonomic dysreflexia: a medical emergency” published by National Center for Biotechnology Information

Autonomic dysreflexia (AD) is a potentially life-threatening medical emergency that affects people with spinal cord injuries at the T6 level or higher. When triggered, AD requires quick and correct action or there may be serious consequences such as a stroke. Because many health professionals are not familiar with this condition, it is important for people who are at risk for AD, including the people close to them, to recognize the symptoms and know how to act. –Christopher & Dana Reeve Foundation

* * * * * * * *

When Jeff was in the spinal cord injury rehab unit, the topic of autonomic dysreflexia (abbreviated as AD in the SCI-world) was drilled into us. During rehab, there were classes that all patients and their families had to attend. AD had a class all its own. It’s THAT important.

The above quotes define AD in easy medical speak. If you look up AD, you'll find all kinds of information straight outta medical school textbooks filled with unpronounceable words. I’m not even going to pretend I understand it at that level. But I do understand it at a very practical and hands-on level. Put very basically in someone like Jeff, whose brain and body no longer communicate with one another because of his injury, AD happens when there’s a pain stimulus below the level where he can feel, and his brain doesn’t know about it. So his body reacts with a rapid rise in blood pressure.

Luckily, Jeff can usually tell when AD is happening. He gets this tingly feeling that starts around his stomach area and spreads all the way up into his face. That’s when he asks me to check his blood pressure. That’s also when I lift his shirt to see if he’s rashy. If he is, it’s definitely AD.

And if it’s AD, I drop everything and act.

If we act fast enough to get his BP down, we can avoid the pounding, debilitating headache. He’s woken up a few times in the middle of the night with a clogged catheter and an excruciating headache. Those have been some of the scariest, most intense moments since his injury.

But even in those scary incidents, we were able to figure out the cause of the AD.

For a week, Jeff had been having random episodes of AD where his blood pressure would spike. Sometimes just sitting him up as high as we could would work to get the BP back down to normal. Other times we needed to use the nitro paste on his forehead to bring the BP down.

So while we were able to manage the AD symptoms, in none of those occurrences could we figure out what was causing the AD.

These episodes were happening round the clock without warning. We thought maybe his air mattress was defective – that it wasn’t alternating his weight properly. I would check his skin thoroughly. Every faint red mark on his body was a suspect. But after a complete investigation, nothing stood out as something that would cause AD over and over.

We came to the conclusion that something was happening internally, and we needed the help of medical professionals to figure it out.

ER – Round 1


At 11 pm on a Tuesday night, I called 911. Even though Jeff was alert, it was still a very unnerving call to make.

We spent 4 hours in the ER. We explained everything that had been happening over the last week. We introduced the phrase ‘autonomic dysreflexia’ and were met with blank stares. And - of course - not once during those four hours did Jeff have an AD episode. They drew blood and found no infection. In the end, a very hurried, quick-worded doctor who we saw a total of 60 seconds during our stay, entered our curtained space like a gust of wind. He told us there was nothing further they could do.  When we asked for further tests, he said that would just be “digging” for something wrong, when there was clearly nothing wrong.

And he sent us home.

Here’s the update I posted on Facebook after we were home:

We spent the early hours of this morning in the ER for Jeff's blood pressure fluctuations. We've been dealing with extreme high and extreme low pressures the last few days.
We are exhausted from having to explain autonomic dysreflexia to every medical professional we encountered this morning. And frustrated by how many of them seemed to not grasp how serious it is.

We are home now and worn out from worry and lack of sleep. This life has been hitting us hard the last few days.

Hoping this bumpy path will soon be followed by a smooth stretch.

ER - Round 1
What my update didn’t mention was how defeated we felt. It was as if we'd been completely and utterly discarded. Like our one beacon of hope as to where we could find answers had been extinguished.

We kept asking each other What could we have done differently?

While we weren’t expecting immediate answers, we did at least expect some level of common sense to emerge. Perhaps something along the lines of ‘Hey, this guy is paralyzed from the neck down – maybe there’s something going on internally that he can’t feel – maybe we should check this out further.’ But evidently that would require thinking outside the box, and working with the patient - listening to and understanding the concerns of someone who lives with a unique chronic condition, … and, of course, ‘digging.’

And as for autonomic dysreflexia, I don't mind so much that most doctors aren't familiar with AD. I don't reasonably expect that they would be if they don't work with SCI patients. What I do mind is when we explain to them what it is and how serious it is, and our knowledge and experience with it isn't respected. 

Back home, the AD episodes continued.

After three more days of exhaustion, tears, and lots of swearing, we were back in the ER.

And while we once again arrived in an ambulance, in theory we were actually driving the advocacy bulldozer. And this time we weren’t leaving until we made headway.

ER – Round 2


We arrived in the ER in similar fashion as the last time. Jeff on a stretcher and me weighed down with bags of medical supplies (I always carry one item of everything we would need in an emergency – even to a hospital). But this time I was armed with an additional tool: a print-out containing information on Autonomic Dysreflexia. A full sheet with graphics and bold lettering explaining what it is, what some causes could be, and most importantly, that it is a life-threatening condition if left untreated.



Once again we went through the same process as three days before. We explained what was happening. We told the EMTs, the woman who admitted us, and that nurse that these blood pressure spikes were unusual. That we knew Jeff had gallstones, kidney stones, and bladder stones, and we were concerned that something was going on with one of those that was causing this problem.

We laid it all out once again.

We were met with another hurried doctor who ordered a slew of tests. Besides more blood drawn, they also did a chest x-ray, a urinalysis, and a CT of his abdomen.

We were encouraged by this movement!

The blood work came back normal. So did the chest x-ray. The urinalysis showed a urinary tract infection (UTI), something not uncommon in people with in-dwelling catheters. In fact, Jeff’s urine results always comes back showing bacteria. They started him on antibiotics even though we said we typically don’t treat it unless he has a fever, which he didn’t. Still, we thought it couldn’t hurt, so we went with it.

Then the rushed doctor dashed into our cubicle announcing the results of the CT scan. 

He said it showed nothing remarkable. 

Then offhandedly asked, “Did you know you have gallstones?”

“Yes!” we told him wondering why he didn’t already know that given that I’d told no less than three staff members on our way in.

“And we’re concerned that those could be causing the problems Jeff’s been having,” I said.

“Gallstones wouldn’t cause blood pressure fluctuations,” the doctor said bluntly.

I explained that the blood pressure fluctuations Jeff was experiencing were a result of something else. That there was a stimulus making his blood pressure spike. And we’re concerned the gallstones could be that stimulus.

Again, the doctor was adamant about gallstones not being a viable source of Jeff’s issues.

“Where’s your pain?” the doctor asked Jeff – a question he’d been asked a dozen times since we arrived.

The problem is, how do you adequately answer this question when you are paralyzed from the neck down and pain doesn't present itself like it does in every other patient this doctor encounters? How do you answer it to make a doctor understand that just because you don’t feel pain like an able-bodied person doesn’t mean the pain's not there?

Because explaining it like that wasn’t working.

The doctor disappeared and we were left to be monitored occasionally by nurses.

ER - Round 2. Between AD episodes. At least this time Star Wars was on!
We were in the ER a good 7 hours this round. And this time Jeff had plenty of AD episodes. The blood pressure cuff on his arm had been set to monitor his BP every 30 minutes. But I quickly learned where the button was on the monitor to take it more often. Because when AD happens, BP needs to be monitored every 3 minutes. And while I’m not usually one to go against the rules, I’ve learned that when my husband’s life is on the line, the rules can just suck it.

Over and over, we dealt with AD. Blood pressure goes up, rash comes on, head of the bed is raised, we wait, blood pressure goes down. Sometimes nurses were even present when it happened. We explained that THIS was AD. THIS was why we were here. THIS was what we needed to figure out.

The nurses watched. Then they left.

I know nurses are supposed to remain calm under emergency situations, especially ER nurses. But there was no indication that anyone was taking any of this seriously.

Finally the doctor swooped in once again - this time with an official diagnosis. He proclaimed that the UTI was the cause of all this, and that he would be sending Jeff home on antibiotics.

Wait ... what?

I don't think so.

Remember that bulldozer we came in on?

We told him we completely disagreed that the UTI was the cause. While UTIs can certainly be serious in quadriplegics, we'd had plenty of experience with them, and they have never caused AD like this. Something else was causing these blood pressure spikes, and we needed more answers.

“I would think that blood pressure fluctuations in someone with your condition would be common,” the doctor said to Jeff.

“They’re not,” we said in unison.

Then my husband drove home the point: “Look, if you send us home, we’re just going to be back here in a few more days. Something is going on in my body and we need answers.”

“Fine! I’ll admit you and run more tests,” the doctor said. He sounded utterly exasperated. “What’s your insurance?”

We told him and he wrote it on a sticky note. He then turned to re-swoop out of the curtain, but pivoted back abruptly. “I’m sorry for being short. It’s just that I am beyond busy!” Then he turned and disappeared.

I didn’t know what I wanted to do more: hug him, flip him off, or present him with an Oscar. Clearly this man was overworked and understaffed. But guess what, so were we. And at this point, we’d take the admission any way we could get it.

We were one step further that we were last time. 

But our journey had really just begun.

* * * * * * * *

Check out the continuing story in Part 2!