Author Archives: ledwards

An Urgent Request

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My father needs a kidney transplant. We are exhausting all means necessary to find a living donor match for him. Please read his letter below, and please share this post as much as you can, and link to it on whatever social media platforms you use.

*   *   *
Dear Friends and Family,

I write you today with a great sense of urgency. As some of you may know, I am
a kidney cancer survivor and when I was thirty-two, doctors removed one of my
kidneys to save my life. Unfortunately, thirty-five years of diabetes and the toxic
side effects of the drugs I must take to treat polymyositis, a muscle disease, have
strained my remaining kidney. Despite my continued efforts to maintain kidney
function, I am now in renal failure and my doctor has determined that I need a
kidney transplant to survive.

I have fought through diabetes, polymyositis, heart disease, and cancer, and I am
not done with my fight yet. I have too much to live for: my wife and I have raised
three children, and they have blessed us with seven young granddaughters. It is my
greatest wish to live to see them grow into the amazing young women I know they’ll
become.

Humbly, I am asking if you or anyone you know might be willing to be tested as
a potential living donor. Living donor transplants represent the best opportunity
for positive long-term outcomes, and provided I am able to find a suitable match,
my medical team is confident this surgery is my greatest chance for living a longer,
healthier life.

I realize that donating a kidney is an incredibly generous act, as well as a major
sacrifice. I wish that I did not have to ask anyone to make such a sacrifice, but I am
incredibly grateful that this option exists.

If you are interested in learning more about the Living Donor Program or are
considering being tested, please contact the Beth Israel Living Donor Team. You can
reach Tracy Brann at 617.632.9851. Based on this conversation, they will guide
you through the process should you choose to proceed with the testing. The Beth
Israel Living Donor Team can walk you through the health risks and the many other
considerations that go into this surgery, but rest assured that the medical expenses
will be paid for by my insurance.

This is truly a life and death matter, and on behalf of my family and myself, I thank
you for your time and consideration. Please do not hesitate to contact me with
any questions or concerns.

Sincerely,
Michael A. Mingolelli, Sr.

*   *   *

Thank you in advance for anything you can do to help us.

Some RSS Housekeeping

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Hi All,

Just a short note to say I’ve added a new RSS feed for this site, if you used to read A Chronic Dose that way and prefer to keep up with that. You can find the button at the top of the page on the right side, with the social media buttons (FB, Twitter, etc.).

So, now there are two easy ways you can subscribe: you can sign up for email updates on the sidebar, or you can update your feed using the new button above.

I think that’s the last tweak–thanks so much for bearing with me, and following me over here.

On Becoming a New Patient

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As the first post here at my my new home, I thought it fitting to return to that seminal moment in the experience of being a patient: finding out you have an illness.

I recently spoke with someone who is newly diagnosed, someone who has otherwise been pretty healthy. Our conversation reminded me of how overwhelming this whole process of being a patient and navigating the health care system can be. As a lifelong patient, I don’t always pay as much attention to this stage in the patient experience as I should, and I started to make a list of all the things that popped into my head as we spoke, ideas both big and small.

What tips or suggestions would you add to this list? What do you know now you wish you’d known when you first received a diagnosis, or, for those who might still be in the process of receiving one, when you first started experiencing symptoms and going to doctors? I’d love to hear your thoughts in the comment section!

  • Don’t feel awkward or guilty about asking for a second opinion.
  • Ask lots of questions—it’s important you understand what’s going on with your health. If you don’t feel comfortable asking your doctor questions, consider meeting with a new doctor or provider to see if there is a better rapport.
  • Some days will be really good. Some days will be awful.  That is okay. Your feelings as you process this are all okay.
  • When it comes to waiting—waiting for appointments, waiting in hospitals, waiting for results, etc., expect the worst and hope for the best. Time works differently in the medical world.  It’s frustrating, it’s not always fair, but it is a reality of the patient experience.
  • A lot of things might seem scary and out of control, but don’t forget—this is your body.  If something doesn’t seem right—a provide doesn’t wash his or her hands; a lab tech sticks you too many times; the test someone is scheduling for you doesn’t sound like the test you know you need—speak up! It might be awkward, but social graces are not worth your health or your sense of comfort.
  • Spend some time getting to know the online patient community. Sometimes, the anecdotal experiences and wisdom there, as well as commiseration and validation, can be enormously helpful.
  • Remember that everyone’s experiences are different, and everyone is at a different point in the process of treatment, acceptance, etc. Not everything you read online will resonate with your experiences, or with what your doctor tells you. Again, ask lots of questions, and don’t be afraid to bring what you find online to your doctor.
  • Drink lots of water and wear layers when you have blood drawn—being dehydrated or cold makes it even harder to draw blood.
  • You won’t get a lot of rest as an inpatient, but there are lots of things you can do to create a better environment and a sense of calm: familiar books, music, and DVDs make a difference, certainly, but you can also inquire about the necessity of overnight vitals to see if you can get uninterrupted sleep, for example.
  • Sometimes you will really want people with you at appointments, or will want to talk about it. Sometimes, you will want to be alone, or want to talk about anything other than illness. These are your boundaries to draw, and it is okay to ask people to respect them.

Also, if you have a moment, definitely let me know if you encounter any issues with the comment system, the subscription service, or anything else that comes up as I fully switch over to this new space.

(And, I am really happy you followed me over here!)

On Place

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Sometimes when I am driving the last leg home, I am still surprised that this ride, that this life, is mine. Thankfully it is a beautiful, scenic New England drive, full of vibrant leaves, pastoral fields and farms, antique houses, and marshy conservation lands, because it certainly isn’t a short drive. (Thankfully, too, I don’t commute to downtown Boston every day, or at rush hour.)

After I battle the pedestrians and buses and cyclists and congestion of Huntington Avenue all the way out of the city, then the traffic lights, construction, and congestion of my old neighborhood, and start the back roads route home the rest of the way, something in me shifts. I am less tense and anxious. There are fewer traffic lights, more people willing to let me change lanes or turn left, there is lots of sky and trees and the changing of seasons is so distinctive. As I cross from one town into the next, inching closer, I relax. I appreciate the scenery. I don’t care what’s on the radio. If my daughter is with me, we talk about the colors she sees on the trees, or what colors the horses are, or where the moon goes when the sun is up high.

Remember, this is coming from the person who, for fourteen years, has lived in the city or right at the edge, who has never been beyond a few minutes’ walk to coffee, Thai, and public transportation. When I lived in Dublin, I was around the corner from the Guinness Brewery and could smell the hops, and less than then minutes on foot from Trinity College and City Center. When I moved back to Boston from Washington, DC, I lived above a trendy restaurant in the South End, then directly across from the State House in Beacon Hill, then right at the intersection of three of the busiest roads in the city where the Jamaicaway, Rt. 9, and Huntington Ave meet. Even when we were on the outskirts, we were still on the D Line train, and had a commercial area with shops, cafes, and restaurants around the corner.

Admittedly, I was a suburban and exurban snob, and couldn’t imagine being far away from so much. I thrived on the proximity to people and places, and drew energy from the pace around me.

Until I didn’t anymore.

My favorite place in the world, my happy place, if you will, is Cape Cod. Just the thought of it brings up memories of long summer days, lots of cousins and family, time with my grandparents, and a freedom to be just be, instead of being a patient or a student, etc., that never existed like that in any other part of my life. We’d pack up the car for the summer and as soon as we crossed the bridge, I relaxed.

I love the beach and I love summer, but as an adult, my favorite time of year on the Cape is the fall and the very early spring, when the crowds are gone and the view is just as spectacular, if not more so because there is no else clamoring for the view. A short weekend trip or just an overnight gives me peace like nothing else. Even with wi-fi and deadlines and my briefcase and traffic at the bridge every time I am there, I breathe more deeply, I exhale more fully. There is less congestion in every sense of the word, and less pretense. I can’t think of a better way to describe it than that.

To a smaller degree, it’s that same content feeling I notice on my long drive home. We expected a lot of benefits (and challenges and drawbacks) from our move, but this I did not expect. I never thought I was someone who was suited for lots of trees and quiet, dark nights and small-town life. Place had a different meaning.

But somehow, it’s working. Life feels a little less out of control here. And with a lot of very hard, very heavy stuff going on behind the scenes lately, I will take serenity wherever I can find it.

And, in the spirit of new places, my new site, laurieedwardswriter.com, will be up and fully functional in the next day or so. This blog will still exist under this name over on the new site, and this current site will automatically redirect you to the new home for A Chronic Dose and you can still subscribe from there and update your feeds, but the blog will be one branch of a larger site dedicated to my books and my professional identity. It’s more than a much-needed design and function update. It’s taking ownership of a distinction that is fundamentally really important to me: that of a writer who is also a patient, not a patient who writes.

Anyway, I am really excited to move to the new site, and to change up the style, consistency, and frequency of my posts over there. Sometimes the best way to really find a groove again is to start from somewhere totally new.

On Self Care (and Sanity)

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I can tell that I really am finding a groove again after such a long time—I find myself writing posts in my head while stuck in traffic. I think about essays that I want to write and send out to editors. (I don’t see this happening any time real soon, but the impulse is there. The stories and opening sentences and phrases are there.)

A confession: I have always had an extremely strong aversion to the term self care. Like, shudder. Unless I’m using it in terms of my newly-minted two-year-old and things like her brushing her own teeth, putting on her shoes, and things like that, it’s just never, ever been part of my lexicon.

It’s hard to articulate why, but part of it is that to me, it somehow seems…indulgent. Intellectually I know that’s not true, and that what is self care to one person may seem extravagant to another, and vice versa, and that what self care means to and among patients varies widely, too.

After a whirl wind new baby-more demanding job-family health extravaganza-book due-selling, buying, and renovating-house couple of years, I think I am finally settling out a bit. Even just having the book done and not automatically having to work late every night, or occasionally using my daughter’s weekend naps to do housework instead of just work work has made an enormous difference.

And with some space to actually do things deliberately this fall, instead of just scrambling to stay afloat, I find myself trying to establish new patterns. Like I said, September always feels like a fresh start to me, and that is especially true this fall, as we’re getting used to our new town and new lifestyle. I never knew how much of an impact place would have on me, but more on that later.

(And, speaking of fresh starts and new locations, I’m going to launch whole new site really soon! Stay tuned for details as we tweak final changes…I am really excited!)

I’m going to bed earlier, which for me means striving for 11pm, but it is a start. I actually feel asleep at 10:30 the other night and it felt wonderful. I really miss the awesome gym near where I used to live, but I have found a home workout routine that I can fit into my life realistically and can stick with, and it feels good to have some structure back, especially after a summer of living out of bags and packing and unpacking way too many times.

I’m experimenting a bit with recipes again, and incorporating a lot more high-protein vegetarian meals into our family diet. I’m planning late afternoon adventures most days of the week, and lately, I haven’t stopped to get the coffee on the way to the playground or the farm or the pumpkin patch that I always used to need en route to our various jaunts. (Every time we pass by a Dunkin Donuts, my daughter says “Mama really likes coffee.” Yikes.)

I got my hair cut for the first time in, oh, seven months, last week. “Don’t ever do that again,” said my new stylist. Trust me, I won’t.

For so long, when I couldn’t find a life rhythm, I couldn’t find a writing rhythm, either. There was no place for new words, for reflection, for ideas swirling around and percolating. I much prefer imagining new posts while stopped at red lights to falling asleep at them (because yeah, that happened).

I’m not trying for radical changes, I just want a little bit more balance. If that’s self care, then I guess that is now a part of my lexicon.

So tell me, what sorts of small changes or new habits are you undertaking? What’s one practice or tip you absolutely recommend?

Invisible Illness Week

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This week is National Invisible Illness Awareness Week.

Normally, I write lengthier posts to discuss living with invisible illness, but this year I did something more interactive. Check out my virtual conference on Pregnancy, Parenting, and Chronic Illness, which is now archived so you can watch it anytime.

Definitely check out the other speakers, too, who covered topics ranging from employment, relationships, communication, and other issues related to balancing life with invisible illness. It’s great to see some familiar faces and colleagues in the mix, and get to know other speakers and advocates, too.

Many thanks to Lisa Copen for her tireless advocacy for people with invisible and chronic illness.

Have a great week!

Letting Go

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“I love you! Bye bye!”

And with that, she was too engrossed in arts and crafts to give much notice to our leaving. I spied a glimpse of her through the window as we crossed the parking lot: earnest, happy, comfortable.

As far as first days of school go, it was a success. (She’s not quite two so it’s a daycare at a school, but she likes calling it school and feeling like a big kid.)

There is so much I am excited for her to learn. Now, she’s known all her colors, numbers, and letters for a really long time, is good with self-care, and says “please,” “thank you,” and “bless you” when people sneeze. Those aren’t the kinds of lessons that matter to me right now. Instead, I am eager for her to socialize. To learn to share, and to cultivate an awareness of others and their needs in relation to her needs and her wants. To learn how to situate herself and her personality within a group of peers, and to remain confident in her ability to play and discover independently, too. I am excited to see how she grows and changes from these oh-so-important life lessons.

It’s a big change for our family, out-of-home care, and we love the place—dedicated staff, part-time hours that meet our needs, and wonderful activities and opportunities. It’s a good change, and she is thriving there, so it is time to give her the space to do that. But it represents the beginning of so much: the little world she has known so far is getting bigger, and for the first time, people beyond our relatives and our close friends will have direct influence on her. This is all natural and normal, but letting go…it is not easy.

I tend to think in semesters, an inevitable byproduct of twenty-one years of schooling and now several years teaching in universities. September always feels more like a new year than January 1 does, so it is fitting that so many things are transitioning right now.

The final copy edits are done on my book, which is now with the typesetter. I should see proof pages soon. Obviously I feel an enormous sense of relief to be at this stage, but it’s also unsettling. Maybe this is a normal part of writing, but right now, I am overwhelmed by the idea that this is final, there is nothing more I can add or change. Right now, as it turns from a marked-up manuscript into an actual book, I am plagued with what isn’t there, the themes and ideas that I didn’t delve into. Scope is incredibly hard to manage, and while intellectually I know I can’t include everything that’s ever interested me or is somewhat related to my topic or I’ll have a thousand pages, I can’t quite silence the little voice that asks, “What about…?”

I tell myself I’ve done the best I can, I’ve put in the hours and the revisions and asked the right questions and now it is out of my hands. Soon these pages will be out in the wide world, and so many more eyes will see them beyond the tight little circle of readers and editors I’ve had. The words will have to stand on their own, and it is time to give them the space to do that.

It is normal, it is natural, it is the progression of things.

But when pieces of your heart are out there, the letting go? It is not easy.

How We Roll: Travel and Chronic Illness

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For the next edition of Patients for a Moment, Duncan Cross asks how we roll with chronic illness. Since I’ve made two fairly long car trips in the past couple months, travel is a timely topic for me.

When I read the prompt, I couldn’t help but pull up a post from the vault, this entry from July of 2006 that captured my most humiliating experience ever. Click on over for the gory details, but it involves airline inconsistency, public disclosure of personal health details, an insensitive bully, a whole lot of red-faced shouting, and The Vest, my expensive and unwieldy piece of medical equipment. Good times.

Aside from traveling to see family, we don’t really have a chance to travel much. In fact, a five-day trip this spring was the first real true vacation we’ve had in years. We haven’t had the time—and haven’t made the time, I suppose. But beyond that, I end up having to cancel things at the last minute often, which makes me hesitant to plan too far ahead. I end up paying a steep price whenever I do make a trip, even a short overnight for a conference or a meeting. Inevitably, I catch something from being on the airplane, and it takes weeks, sometimes months, to clear my system.

So, given that airline travel makes me sick, and my hesitancy to purchase the ever-expensive plane tickets too far in advance, when we do need to be somewhere, we’ve started driving. (Unless it is just too far and too short or a trip, or we find a great deal on tickets, and it’s not cold/flu season, etc.) We have family in Michigan, so years of 12-hour drives have helped condition me. We can control how long we’re on the road, we can stop if we need to, and we honestly, we really love the chance to just chat. Sometimes we’re several states in before we even turn on the music.

By now, we know which rest areas have viable food options for me, as gluten-free food is tough to find on the road. We know which hotels take dogs, which routes have the best views, and the best spots to fill up on gas.

I’ve learned to keep my “regular” meds in my purse in the front so I can reach them easily. We pack tons of water and low-sugar drinks, and I’ve started bring a cooler of healthy snacks—balanced nutrition bars, trail mix, yogurt, etc. That way, if the (scant) salad offerings are more meager than usual, I know I have something to eat that is gluten-free and has protein. I keep my brain fog in mind when we divvy up the driving.

(And for the toddler? Lots of books, snacks, and a mini DVD player she watches Baby Signing Time and Sesame Street on. She can turn it on and off, rewind/fast forward, and change the volume on her own, which makes the process pretty painless. So far, we’ve been really luck she rolls so easily and without complaint.)

Of course I do fly and take the train at times, but taking travel into my own terms (and staying healthier for it) has made a big difference.

Brain Fog

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It was just a passing comment, something I didn’t even think about as I said it.

“I’ll take this shift now, so I’m not driving later in the afternoon.”

We were making a 10-hour drive to Virginia, and we usually trade drivers every few hours on long car rides. Late afternoon, from about 3pm-6pm, is my dead zone, so I wanted to avoid being behind the wheel on monotonous highway stretches if I could.

I am not sleepy then, per se, but I am spacey. I turn pale, I can’t focus or concentrate, I start sentences and don’t remember where I am headed with them, I make dumb mistakes and forget things. I miss turns or get lost. Everything simply drains out of me. Sometimes I start the day like that and it doesn’t go away, sometimes it’s hardly noticeable, but it’s always there.

(And it’s not the exhaustion that motherhood and sleep deprivation cause, though I am the first to admit that the intense sleep deprivation I’ve had the past two years juggling parenting, working, and writing a book has made it much, much worse.)

Brain fog. It’s not so incapacitating that I don’t usually just push through it—really, at that time of day, what other choice is there? I’m in the classroom then, or playing with my daughter, or cooking dinner or going to a playdate or having chest PT. I grab a coffee, drink some water, and wait to get my second wind later in the evening.

It is present enough that it automatically factored into our driving schedule, though, and that meant something.

That passing remark was probably the first direct comment about it I’d made in months, if not years, beyond the simple “yes” I reply when my husband looks at my face and says “You’re off, huh?”

Brain fog. Being “off.” It’s not something I talk about on this space, either. Granted, I really haven’t written about illness of any kind these days, but it just is, it is such a part of everyday life.

I am not even positive how I should attribute it: Partially, it could stem from my adrenal system, which has never been the same since my total adrenal failure several years ago. I’ve never really been the same since that happened. The chronic fatigue I’ve had since I was diagnosed in high school is another obvious culprit. Then there’s the whole breathing thing—when I’m wheezy, congested, or too “tight” it can cause me to be drained and spacey, and when I have an active infection, that obviously gets much worse.

It doesn’t really matter which condition contributes which percentage, since none of them are going anywhere. I do know I wasn’t always like this—I had acute flares with chronic fatigue, of course, but I wasn’t always this dependably and overwhelmingly out of it on a regular basis. It has crept up on me incrementally, and that small conversation about driving really made me step back and think about how long it has been.

So, brain fog. Lots of you have it, lots of conditions and medications can cause it. How does it affect your daily life? What accommodations do you make for it? And any tips beyond guzzling coffee?

Home

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It’s been quiet around here, quieter than I’d planned but so much of this summer has not exactly gone according to plan, so I’m trying to roll with that.

Since we last spoke about Lyme disease and its co-infections, we’ve had weeks of renovations, moving, unpacking, some health crises, etc., but we’re finally getting settled.

There is a whole lot of “new”—new town, new house, new physical therapist, new job responsibilities, and more, right now.

But in spite of the long (hot) hours working on the house, the juggling, and the overall upheaval of the past couple months, it’s beginning to feel like home. My office is unpacked, and my desk overlooks a window with a stream of sunshine and a rather bucolic view. My daughter knows where all her toys and books belong, and loves her yard and her porch. “Hello, new house!” she exclaims when we pull into the neeighborhood. “Goodbye new house! Goodbye flowers and trees and water table!” she calls merrily when we leave.

And it feels like more than simply new; it feels like the beginning of something better. There is a lot say about that, and about getting a new physical therapist, and about juggling work and illness, and about parenting an almost-two-year-old, and so much other stuff.

(And I just got my copy edits on my manuscript back—I have an ISBN, people. This is getting real!)

Now that my physical space is sorted a bit, I’m finding my mental space is realigning too, and I can better focus on this virtual space. I’m working on a bunch of posts, and more long-term, working on a new look and feel.

For a long time, I’ve struggled to regain my rhythm. Life needed a reset button, and I think I found it.

Have a great weekend!