Tag Archives: living with chronic illness

In the Lymelight podcast

Podcast: In The Lymelight – Dr. Casey Kelley

WELCOME TO IN THE LYMELIGHT: A SHOW ABOUT…WELL…LYME DISEASE
Season 2, episode 4

Welcome to In The Lymelight: a show about…well…Lyme Disease. In the Lymelight aims to bring humor and knowledge to an otherwise somber topic with biweekly expert interviews that include, yes, the “heavy” stuff, but also everything in between that is meant to make your day a little bit brighter. Hosted by fellow Lymie and alpaca lover Alex Moresco: I hope you enjoy listening in as much as I enjoy talking.

In our fouth episode of season two of In The Lymelight, Alex sits down with doctor and fellow Lyme warrior, Dr. Casey Kelley. Dr. Kelley and Alex discuss how Dr. Kelley’s own health journey brought her to helping others, why Lyme is so difficult to treat, the challenges in testing for Lyme and mold toxicity.

 

For interview suggestions, information or just to say hi- you can connect with me on instagram at: @alitmoresco.


Opinions expressed by contributors are their own.

For interview suggestions, information or just to say hi- you can connect with me at: @alitmoresco

In the Lymelight podcast

Podcast: In the Lymelight – The Intuitive Swan, Kelsey Mazeski

WELCOME TO IN THE LYMELIGHT: A SHOW ABOUT…WELL…LYME DISEASE
Season 2, episode 3

Welcome to In The Lymelight: a show about…well…Lyme Disease. In the Lymelight aims to bring humor and knowledge to an otherwise somber topic with biweekly expert interviews that include, yes, the “heavy” stuff, but also everything in between that is meant to make your day a little bit brighter. Hosted by fellow Lymie and alpaca lover Alex Moresco: I hope you enjoy listening in as much as I enjoy talking.

In our third episode of season two of In The Lymelight, Alex sits down with friend and fellow Lyme warrior, Kelsey Mazeski, also joined by comedian Chris Jones. Kelsey, Alex and Chris discuss Kelsey’s challenge in getting a diagnosis after suffering heart problems and seizures, creating a meaningful life while living with chronic illness…and we touch upon dating while ill.

You can follow Kelsey on The Intuitive Swan: www.theintuitiveswan.com

For interview suggestions, information or just to say hi- you can connect with me on instagram at: @alitmoresco.


Opinions expressed by contributors are their own.

For interview suggestions, information or just to say hi- you can connect with me at: @alitmoresco

Reframing Restrictions

by Jennifer Crystal

A few months ago, someone told me that my life has a lot of restrictions.

From a certain perspective, this statement seems true. To thrive in the context of chronic tick-borne illness, rather than to merely survive it, I do have to adhere to certain rules that probably seem restrictive to the average healthy person. Before I got sick, I no doubt would have thought such a schedule was restrictive, too.

What exactly are these “restrictions”? I need to nap for a couple hours every afternoon. I need to make sure I’m in bed around 10:00 p.m. I don’t eat gluten or processed sugar, and I don’t drink alcohol or caffeine. I pace myself physically, planning out travel and exercise so I can enjoy activities rather than become depleted by them. I avoid over-stimulating events like concerts and fireworks that can rile up my otherwise controlled neurological symptoms. I don’t watch Game of Thrones.

These parameters are what allow me to function. It’s taken time, reassurance, and a perspective shift to recognize these boundaries are ensuring my health. In order to do a lot, I’m stinting myself a little. Without these “restrictions” in place, I would quite simply relapse.

Though I have generally accepted the limits or parameters on my life, sometimes I still do get frustrated by them. I’d prefer not to have to cut an afternoon or an evening short because I have to sleep. I don’t like missing out on things. I don’t want my needs to hold anyone else back, and I try not to let them (“You guys stay out; I’ll take a Lyft home.” “I’ll ski with you in the morning; you stay for the afternoon while I nap.” “I’ll drive separately to the party, so you won’t have to leave early when I do”).

Because I make these efforts, it hurt when someone told me that my life has too many restrictions.

It also gave me pause. I realized restrictions was not a word I had ever used before. I had often used the word “limitations”. When giving a quick overview of my decades-long struggle through misdiagnosis, diagnosis, treatment, relapse, and remission, I have said, “It was really bad for a lot of years. Luckily I’m much better now, though I do still have certain limitations.”

Limitations seems not as negative as “restrictions”, but it’s hardly positive, either. Using it gives other people permission to see my life as limited, when in fact I want them to appreciate the truer glass-half-full version of me.

I don’t have restrictions. I have needs.

Sure, my needs are different from those of others. But the fact is, everyone has needs. Introverts, for instance, need time alone. Extroverts need to recharge with others. Shift workers need to sleep during the day. These are simply things people need to do to live their best lives. To be the best version of themselves.

Sometimes that means putting other people’s needs first, to make sure they’re taken care of, too. Parents need to take time off work when their child is sick. They need to leave a dinner party earlier than they might otherwise have, so they can get their child to bed.

What matters is not what these boundaries of life are, but how they are viewed. Should we bemoan all that we can’t do? Or should we appreciate all that we can do?  I could say, I can’t work a 9-5 job and I can’t celebrate the New Year at midnight, and I can’t go to a Dave Matthews concert anymore. Or I could say, by not doing those things, I can work part-time. I can write. I can avoid brain fog. I can exercise. I can visit friends.

There was a time, when I was completely bedridden, when I couldn’t do anything. I know how lucky I am to have gotten as well as I have. Some Lyme patients are paralyzed. Some have schizophrenia. Other people have cancer and have to endure chemotherapy. There are veterans who suffer PTSD and limb amputation, people who have traumatic brain injuries and strokes and terminal diagnoses.

Even those people can choose how they view their restrictions. Take Jean Dominique Bauby, the former editor of French Elle magazine who suffered a stroke that left him with “locked-in syndrome”. His cognitive function was fine, but the only part of his body he could move was his left eyelid.

So what did he do? He figured out a communication system whereby he blinked letters to a scribe. It was a painstakingly slow process—it took him two minutes to blink out one word—and yet he managed to write an entire book, The Diving Bell and the Butterfly. Instead of being weighed down by his situation, Bauby found a way to shine his light out into the world.

He inspires me to see my own limitations in a new light. When I looked up restrictions in Roget’s Thesaurus, I found a long list of negative words, but in the middle of it, in capital letters, was the word CARE.

To honor your needs is to care for yourself, to free yourself from victimhood and, instead, turn yourself into a victor, a Lyme warrior. To honor your needs is to see yourself as chronically awesome rather than chronically ill.

If someone else can’t see the beauty of that reframing, that shortsightedness is their restriction, not yours.


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She has written a memoir, One Tick Stopped the Clock, for which she is seeking representation. Contact her at: lymewarriorjennifercrystal@gmail.com

Things I Never Thought I Would Do Before Lyme

by Kerry J. Heckman

On one hand a doctor treating Lyme may recommend antibiotics, and on the other hand, a doctor treating an autoimmune disease may recommend immunosuppressants. It’s very difficult to know which is the right decision, that is,  which doctor to listen to. I just keep following my intuition and hope science will catch up soon.  

It’s been said that if you want something you’ve never had, then you must be willing to do something you’ve never done. In 2014 there was nothing I wanted more than to recover from Lyme, so I knew I would have to do things I’d never done to make it happen. At the time I didn’t know how far outside my comfort zone I would have to go, or even four years later I’d still be pushing those boundaries, but it’s a lesson I’m glad to have learned.

The first thing I never thought I’d do was get an MRI. I know, MRIs are no big deal, right? But because I have claustrophobia it was a prospect I had always dreaded. The thought of being put on a mechanical table and then slowly inserted head first into a small tube was terrifying to me. Now I’ve had five MRIs and counting, and each one gets easier than the last.

There’s a surprising benefit to constantly being forced to do things you never thought you’d do before—it builds your courage. Bravery is a muscle and when you use it, it gets stronger. Each time I came out of an MRI unscathed, it made the next one easier. And so my MRI challenges have had a broader impact on my life.

Here’s a few examples of things I never thought I would do:

I never thought I would stop eating bread.

I suppose I still eat “bread,” but it’s not that fluffy, doughy substance I once loved. I used to have some form of bread with every single meal. I was one of those people who didn’t understand gluten-free diets or the complexities of nutrition and digestion. It’s a challenge for me every day and I’m still not perfect, but the sacrifice is worth it.

I never thought I would take 50+ pills in a day.

I couldn’t even swallow a pill until I got to college and at that point I was taking an ibuprofen about twice a year. I rarely ever took medication. After I was diagnosed with Lyme, I started taking the handfuls of pills and supplements that’ are the norm for all Lyme sufferers. Now I can swallow a pill the size of a quarter— okay, that’s an exaggeration—but I can swallow just about any pill given to me.

I never thought I would get into a hyperbaric oxygen chamber.

A hyperbaric oxygen chamber is similar to an MRI, with one important exception—it’s a completely enclosed tube. This makes it even more intimidating for someone with claustrophobia since you can’t panic and get out at a moment’s notice because the chamber has to depressurize first. I had to train myself, but now I’m able to get this valuable  treatment without worrying.

I never thought I would go against one doctor’s advice to follow another.

There is a link between chronic infections and autoimmune disorders and when you have both you usually have two doctors recommending opposite treatments. On one hand a doctor treating Lyme may recommend antibiotics, and on the other hand, a doctor treating an autoimmune disease may recommend immunosuppressants. It’s very difficult to know which is the right decision, that is,  which doctor to listen to. I just keep following my intuition and hope science will catch up soon.

I never thought I would quit my job.

I was a school social worker for ten years. I was happy doing what I loved and thought I would stay in that job until I retired. I had tenure, a pension, and the stability that most people crave. Then I got sick and didn’t have the energy to meet the demands of the job. It ended up being the best decision I’ve ever made for myself, but it was not in my life’s plan.

I never thought I would move across the country.

After a couple years of backwards priorities, I realized my health had to take precedence over everything. The extreme temperatures of the Midwest were getting to me and I felt like I’d exhausted my medical options there. If I was going to get better, I needed to make a drastic change: I needed to move. Uprooting my life took courage. I would not have been brave enough to do it without first experiencing everything else Lyme and its treatment required of me, starting with that first scary MRI.

This is just a small list of some of the things I’ve done in the past few years in order to live with Lyme disease.  It’s funny, among those suffering this disease I don’t even consider myself one of the brave ones. There are so many things I’ve seen Lyme warriors braver than myself take on and still manage to thrive. For instance, I’ve never had a PICC line or a port. I’ve never traveled to a foreign country to be treated by doctors who speak a different language. But I know I would do so if I felt it was necessary. That’s what Lyme teaches us—we are really braver than we ever thought possible.

If you can get through Lyme treatment, you can get through anything.


kerry heckmanOpinions expressed by contributors are their own.

Kerry J. Heckman authors the wellness and lifestyle blog Words Heal. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.

Honoring the Past, Embracing the Future

by Jennifer Crystal

A friend recently shared with me the news that her grandmother had passed away. “She was 97,” she said. “It’s not like we didn’t know it was coming, but it’s still sad.”

“Of course it is,” I told her. “You loved your grandmother, and her passing marks the end of an era. You have to grieve and honor that.”

Then I realized I could have been talking to a Lyme patient, or to anyone whose life has been changed so decisively that they can mark a before and after period. Sometimes these distinctions are normal and expected—losing a beloved grandmother, moving from childhood to adulthood or from single life to marriage.  But they can still have their own difficulties, and still require time for one to acknowledge the transition. It’s harder when life throws an unexpected curve ball. Say, when a young person dies tragically young, or when a spouse leaves suddenly, or when cancer shows up, or when a tiny tick surreptitiously bites you, forever changing the course of your life in ways you could not have anticipated.

When those types of life changes happen, the distinction between before and after can be dramatic, and there can be anger, frustration, and sorrow over the fact that the shift happened against your will. I often talk about my life in terms of before and after I became ill with Lyme and several other tick-borne co-infections. I’ve worked hard to reclaim my identity, realizing that some of the activities I used to enjoy “before” can still be a part of my “after” period, just in more adaptive ways. I’ve realized that the core parts of who I am—my values, my sense of humor, my care for others—transcends that divide in my life.

But I’ve also learned that it’s important to grieve for and memorialize our lost selves, just as it’s necessary to do so for a person who has died. Grief in the context of death honors those who have passed, and helps those who are living move forward without their loved ones. Grief in the context of chronic illness or distinct life change is similar. It’s difficult  to accept who we are now— in the “after” period— without properly acknowledging who we were before.

For years during my illness, I ignored winter. If I couldn’t ski, well, then winter simply wasn’t happening for me. Once I did finally get back on my skis, in a less intense way than I had before, I was able to see that my denial of winter was a stage of grief. They’re called stages for a reason. You may spiral between them, ever moving towards acceptance and healing, but you aren’t supposed to just stay in one of them.

Had I never been able to ski again, I would have had to deal with the anger and sadness of that reality, rather than continuing to deny it. If I had stayed in the denial stage, I would have gotten stuck, never allowing myself to move forward with a life that includes, but is not defined by, chronic illness.

I know this because there are other parts of my “before” life that I have had to give up. It’s unlikely that I’ll ever waterski again, not just because of Lyme but because of other health concerns. I probably won’t stay up until midnight, make it to the end of a wedding reception, dance my socks off at a party, hike a mountain, or ride a bicycle. I can’t travel to high altitudes, where the lack of oxygen will affect my babesia symptoms. This last one has been one of the hardest to accept. I was living in Colorado when I first got sick. I left my bike there as collateral for when I came back.

That was 15 years ago.

Since that time I have reached remission but not the ability to travel cross-country or to high elevations. My bike has been sold. My old apartment has been torn down and reconstructed by developers.  Children I knew in my time there are now adults. I’ve missed so many graduations, weddings, and even funerals of my Colorado friends.

I can accept this reality now, because I allowed myself time to be angry and upset at the injustice of it all. And I also took the time to memorialize—that is, simply to remember the way things were— the life I once had in Colorado. The process has included writing this piece, sure, but also framing some of my favorite photos from before and displaying them in my current Boston apartment. I’ve also created scrapbooks of memories. I stay in touch with friends who still live in Colorado, who have helped me bridge the divide between before and after. One of them flew to Boston for my recent birthday. We reminisced about old times, lamented the events I’d missed, and most importantly, created new memories that I can carry into the future.

There are even bigger parts of myself, of my life, that I don’t yet know for sure are gone, but could possibly be. No doubt some of these will surprise me in the years to come. Managing a chronic illness at 40 years old, I don’t know if I’ll ever bear my own children. I might, just as there might someday be a cure for babesia that will allow me to travel to high altitudes, just as there might someday be a cure for Lyme that will allow me to do all of the other things I’ve had to let go of. I hold on to hope, but I also face reality. I’ve had to take the time to really think about, mourn, and ultimately embrace that reality. I feel grateful to be well enough to even raise a child, even if it turns out I can’t bear one. I’m open to—indeed, excited about—the possibility of adopting or becoming a step-parent someday.

It’s taken me time to get to this place, and the path is different for everyone who seeks to get here. Some women in my position, for example, are as tied to having biological children as I was to living a ski-based life. Their grief, their fear of the unknown, is understandably overwhelming. There are some things we can never quite let go of, just as life without a loved one is never quite the same.

It’s okay to miss the people and the lives we have lost, and it’s also okay to embrace who and what we are today— what we can do in these after periods. Memorializing someone or something is bittersweet. I thought about this with the recent celebration of Memorial Day. Perhaps it’s at the end of May because it marks and honors those who have left us, just as a new, bright season begins to dawn. The day and all it symbolizes are important. So, too, is the time that comes after it.


jennifer crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

Making the Holidays Work For You

By Jennifer Crystal

Many people with Lyme disease don’t have the physical capacity to celebrate the holidays. But that doesn’t mean you can’t enjoy them! Here are some tips to work around your illness during the holidays.

When my college friends and I were in our early twenties, we used to gather every New Year’s Eve in a city where one of us was living. We partied, cheered at midnight, and continued celebrating into the wee hours of the morning.

Each year, the festivities got a little harder for me, and it wasn’t because I was getting older. It was because tick-borne diseases had been infecting me since I was 19, quietly spreading through my body and brain until, when I was 25, they fully commandeered me. Finally diagnosed with Lyme and some of its co-infections, and on intense treatment, I became bedridden. Traveling for New Year’s—let alone staying up until midnight—was out of the question.

Since I couldn’t celebrate the holiday the way I traditionally had, I came to feel that celebrating at all was also out of the question. I was wrong.

After their festivities, my friends began a tradition of traveling on New Year’s Day to my parents’ house in Connecticut, where I was convalescing. We’d eat lunch together, and they’d sit with me on the couch. Sometimes I fell asleep while they were talking, surrounded by the warmth of their voices. Sometimes I disappeared upstairs to rest in my bed. When I came back, they were still there chatting and laughing, waiting for me. It was a demonstration of unconditional love.

It was also a lesson in unconventional holiday celebrations. Many people with Lyme and patients with other debilitating illnesses don’t have the physical capacity to mark holidays the way they did when they were well. They may no longer be able to cook their favorite meal, travel to a family gathering, or even sit up through dinner. But that doesn’t mean they can’t celebrate at all. It just means they have to reframe the festivities to work around their illness.

What might this look like in practice? Here are some suggestions:

  •  Change the celebration to a time that works for you. Even after I wrestled my health into remission, I still couldn’t stay up until midnight. One year my graduate school friends threw a party on New Year’s Day instead of on New Year’s Eve. We had brunch and then I took a nap. My family now does Thanksgiving, Hanukkah and Christmas dinners around 4 p.m., after I get up from my nap. I miss hors d’oeuvres, but I’m still able to enjoy the meal and be well-rested to boot. My college friends still get together around the holidays for what we call “Christmakkah.” They drive to wherever I am, and though it’s not technically on Christmas, Hanukkah or New Year’s, the point is that we get together and enjoy each other’s company, in a way that works for all of us.
  • Bring the celebration to you. This doesn’t mean you have to do all the work. In fact, you may not be able to do any of it. But would friends or family members be willing to gather at your home, rather than you having to travel, and bring food with them or cook it at your house? Perhaps they can help prepare your favorite meal; you can direct them from the table or couch, or sit down to chop one apple while they stand to do the rest. I know how hard it is to ask for help, but friends really do want to pitch in and feel like they’re doing something tangible for you. They may be more open to changing tradition than you’d expect. Sometimes all you need to do is ask.
  • Realize it doesn’t have to be all or nothing. You might not be able to string lights on a Christmas tree, but that doesn’t mean you have to stay upstairs in bed while your family decorates. Can you hang one ornament? Or lie on the couch watching your family trim the tree, so you can still feel like you’re part of the action? You might not be able to attend a full party, but could you have a friend drive you over early to visit with the host for half an hour before things get too busy and noisy? Can you attend the party but ask the host if you can slip upstairs to lie down if you feel the need?
  • Remember it’s okay to say no. Holidays are stressful for everyone, a time when both the healthy and the infirmed tend to push their limits to travel, attend gatherings, or rush around shopping and going to parties. Ask yourself, is this push really necessary? Is it worth it to jeopardize my health? You must put your health first, even at the holidays, even if that means missing out or being disappointed.
  • Take time to celebrate yourself. One Christmas I was too sick to go next door to the neighbors for dinner. I had a pity party for a few minutes. Then I ordered my favorite Chinese food, put on cozy holiday pajamas, and journaled about the progress I had made during that year. Even if you can’t go anywhere or do anything this holiday season, you can still turn yourself and your place of convalescence into a comfortable spot for a personal celebration. Take a bath, read a light magazine, watch a favorite holiday movie, or do whatever it is that makes you feel nurtured.
  • Remember the big picture. Celebrating “Christmakkah” helped me realize that ringing in the New Year with my friends was about being with them, not about being awake at midnight on December 31st. You might not be able to do all the activities you used to do, but what’s the most important part of those celebrations anyway? Is it being with people you love? Singing carols? Eating a specific meal? Find a way to enjoy those parts on an alternate schedule, rather than bemoaning the fact that you can’t celebrate the full holiday as you are “supposed” to.

I wish you all a happy and healthy holiday season!


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Do you have a question for Jennifer? Email her at  jennifercrystalwriter@gmail.com

Should I Tell My Employer I Have Lyme Disease?

by Jennifer Crystal

The chronic illness conundrum. When personal issues enter the workplace.

 

One of the many factors that led to my 2007 relapse was a huge research project I was doing for the magazine I was working for at the time. The incredible amount of energy and brain power that I put into the project caused my neurological symptoms to flare, until I was physically and mentally overwhelmed. My doctor suggested I take a week or two off work while I restarted antibiotics.

“But my editor doesn’t know I have Lyme,” I replied sheepishly.

“Why not?” he asked.

“I didn’t want her to think I’m not capable of doing my job.”

My decision to be secretive was born of fear: I was afraid of being judged, afraid of being defined by my illness, afraid of being seen as unreliable, afraid of losing the job I needed to help pay my medical bills. The irony was that by not telling my boss the truth about my health—and my limitations—I had worked myself into a situation in which  I was incapable of doing my job.

Angst over when or if to tell an employer about one’s illness is a common and scary struggle for patients of any chronic malady. It’s especially tricky with a relapsing disease like Lyme, which can flare, and impact work ability, without warning.

I was lucky because I worked from home. I set my own hours, so as long as I met my deadlines, it didn’t matter what time of day I did my work. I could write and edit articles from my couch, in my pajamas, and my boss was none the wiser. I napped in the afternoon and no one knew.

Not everyone has the same flexibility. Some Lyme patients find themselves struggling to look alive from nine to five, wishing they could curl up under their desks. They come home exhausted, unable to do anything but sleep.

The flexibility of my job, however, had its downsides.  I was paid by the hour. It was easy to forego social plans in favor of doing another couple hours of research. I lost my sense of work-life balance. How could I give myself downtime if I could be doing work and making money? The more hours I put in, the more money I made; the more money I made, the smaller the medical bills became, but the larger the medical issues grew.

After restarting antibiotics, I had such a bad Herxheimer reaction that I became bedridden and incapacitated. I couldn’t perform the daily tasks of living, let alone the duties of my job. I had no choice but to tell my boss the truth.

As I hesitantly explained my situation to her over the phone, she stopped me and said, “Oh, I knew you had Lyme…I read that article you wrote about it.” After attending my college roommate’s wedding in Florida in 2006—just as I went into remission—I’d written a piece about that experience for our college alumni magazine. I’d forgotten that my editor had gone to the same college, and received the publication. “I remembered that piece and have been so amazed with how much work you’ve been able to do in spite of all you’ve been through,” she said.

She offered to have me slow down for a few weeks, and when even that was too much, she hired a temp to cover me for a month. She didn’t sound annoyed, or frustrated, or put out, or any of the negative reactions which I’d imagined. Instead she said, “You are a critical part of this operation. I want to work with you through this. Just tell me how I can best help you and respect your needs.”

Had I been upfront with my boss in the first place, I would have saved myself the stress and anguish that contributed to my relapse.

It goes without saying that not everyone has such an understanding boss. Not everyone is able to take time off without jeopardizing their career, and not everyone can remain financially afloat if they do take a leave of absence. Many Lyme patients are the chief breadwinners for their families. In addition to their paychecks, they desperately need the health insurance their job provides, even though the work itself can lead to a relapse of the illness that requires insurance coverage in the first place.

It’s quite a conundrum, with no set answer.

One thing that is true across the board, though, is that Lyme sufferers and other patients of chronic illness are not in these difficult positions by choice. When I expressed to my doctor my concerns about telling my boss about Lyme, he said, “Having Lyme isn’t anything to be ashamed of. It’s not like a secret addiction or something you did to yourself. You were bitten by a tick—it could have happened to anyone. I think, if anything, your boss should be impressed that you’ve been able to do so much while managing this illness.”

He was right! Lyme disease wasn’t my fault. It wasn’t anything to feel guilty or embarrassed about. A good boss will understand that.

Ultimately I had to quit my job at the magazine. Unable to care for myself or pay my bills, I moved back in with my parents at 28- years of age. I was very lucky to have their help, but the move was a blow to my independence and my pride.

I kept my doctor’s words in mind, though, as I wrestled myself back into remission. Once I was well enough to work again, I understood the process, slowly, first volunteering, then taking on small freelance projects. I also reevaluated my interests and capabilities. I knew I couldn’t work in a pressured editorial position again, and I knew I couldn’t keep a traditional schedule. So what could I do? What was I passionate about? What was a career that offered a more flexible schedule?

My readers know the answer: I channeled my medical experiences into writing and teaching, et voilà, here I am penning this post. Do I still have fears that I’ll relapse and not be able to keep my commitments? Of course. But I’m upfront with my colleagues. And, most importantly, I’m upfront with myself about my limitations, and that honesty has made me capable of more than I ever could have imagined.


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

When We Build Cathedrals

by Susan Pogorzelski
#MyLymeLife

Finding the strength to build when your chronic illness leaves you feeling exhausted and invisible.

 

I recently read a powerful story by author and speaker Nicole Johnson about a gift she received at a dinner party. It was a book about cathedrals whose message she didn’t understand until she read the inscription from her friend. The inscription read, “With admiration for the greatness of what you are building when no one sees” and came at a time when Nicole herself was struggling with feelings of inadequacy and invisibility as a mother.

When she read the book, she found it life-affirming. The world doesn’t know who built these cathedrals of prestige and beauty, she explained, but the builders were fueled by faith, passion, and purpose in their work. Nicole continued to reiterate a story in the book of a wealthy man who approached one of the builders while he worked. She writes:

“He saw the workman carving a tiny bird on the inside of a beam. He was puzzled and asked the man, ‘Why are you spending so much time carving that bird into a beam that will be covered by the roof? No one will ever see it.’ And the workman replied, ‘Because God sees.’”

I’m not a mother, but these were the words I’ve been needing to hear for so long now. Because while I may not know what it’s like to feel invisible with regard to parenthood, I know what it’s  like in the face of chronic illness. I’ve lived with the hope that someone might see me, hear me, for the past five years—even longer, as this has been a common refrain for most of my life.

Doctors wouldn’t hear me when I told them there was something gravely wrong with my health, when I begged them to help me save my life. So I saved my own by finding a doctor who would. Colleagues refused to see my pain, instead spreading rumors and calling my character and work ethic into question when I couldn’t walk, could barely talk, couldn’t find the energy to lift my head from the pillow for more than minutes at a time. So I confronted them with dignity, pushed myself past my limitations, and fought my way into remission…and a promotion. Family and friends tried but couldn’t understand the lifelong effects of this disease. So I held awareness events in my local community, wrote blog posts and a second novel about Lyme disease to encourage compassion, and reached out to other patients knowing they might be feeling just as alone, to assure them that we were on this journey together.

With each challenge, I’ve pushed forward to save myself, to create something lasting for myself,  to leave a story of hope behind for others. Where this illness has consistently tried to break me down, I keep moving forward to build my life back up because I don’t know how to stop, even through this recent relapse, and the fire inside won’t let me.

But I’m tired now.

I’m tired of fighting against this dark cloud that seems to hang overhead, cutting the signal, preventing me from reaching those I want to reach and helping those I want to help. I’m tired of the days when my energy is sapped, when I lie in bed unable to move, wishing I could be working or writing or being useful in some way. I’m tired of the glimpses—small pockets of life purpose that give me just enough willpower to carry on into tomorrow, but maybe not the next day.

I’m doing so much, but it never feels like enough, and I’m just so tired.

I’m staring at my own life—this cathedral I’ve built from the ashes of this disease—and I can’t see past the beams. What will this life look like in the end? What positive change will have come from my own suffering? What purpose still remains? If I’m invisible to everyone already—feeling like I’m barely reaching anyone—then what hope is there for what I’m building now?

Why are you spending so much time carving that bird into a beam that will be covered by the roof? No one will ever see it.

Because it’s there. I know it’s there, this work I’ve created full of hope and heart, and maybe that’s what matters.

I don’t know if what I’m building will be seen. I don’t know if the words I’m sharing will be heard. But they’re here for those who need it. And I’ll keep sharing. I’ll keep building. I promise I won’t ever stop.

Word by word, carved bird by carved bird, I’ll work beside others and build and build and build until the legacy lies within the cathedral itself—hope and faith and change for those to follow, so that those who suffer will be seen and heard, and not just by those who choose to look.

There’s a purpose for us yet.


Opinions expressed by contributors are their own.

Susan Pogorzelski is the author of “The Last Letter,” a semi-autobiographic novel about her struggle to find a Lyme diagnosis and subsequent journey through recovery.

Getting Involved: When Your Intention Says Yes, But Your Body Says No

by Jennifer Crystal

You’re feeling better and want to get involved, but your chronic illness has other plans.

 

Last January, a friend asked if I had attended a recent local Women’s March. I shook my head sheepishly. “But that doesn’t mean I don’t care,” I quickly said.

This is an exchange I’ve had many times. I often feel like I need to explain the difference between wanting to get involved and being able to. No matter your political leanings, the last few months have been unsettling for everyone. There have been so many causes and marches and ways to become engaged that even the most energetic of us has felt overwhelmed. For those suffering from Lyme and other debilitating illnesses, that feeling is amplified by the fact that involvement in daily life, let alone activism, is often too much to handle. When you are too physically or neurologically overtaxed to cook meals, talk on the phone, or read books, civic engagement seems out of the question. And that can lead to feelings of guilt, shame and selfishness.

Wanting to watch TV or hang out with friends and not being able to do so is frustrating. Wanting to get involved in something bigger than ourselves and not being able to takes those feelings to a new level. I remember, when I was completely bedridden, someone said to me, “Why don’t you volunteer, to get involved in something besides being sick?” What that person didn’t know was that if I could have volunteered, I certainly would have. If I could have worked part-or-full time, I would have. If I could have done anything that made me feel connected to the world at large, engaged in my community, or occupied with something bigger than my illness, I would have. But I could not.

I had to get well before I could do any of those things. It comes back to the old oxygen mask analogy: you have to secure your own mask on an airplane before helping someone else with theirs. This rule feels counterintuitive because our desire as humans is to help others first. But we can’t help anyone if we’re not breathing. Having Lyme or any of its co-infections is like being without the oxygen mask. There is very little we can do for ourselves, much less others without it.

Once we are breathing again, though, we still may not be able to participate in events and activities the way we’d like, but that doesn’t mean there aren’t other ways. Though I am no longer housebound, I have limitations that prevent me from participating in events like political marches. Big crowds and large noises grate on my neurological symptoms. Standing for hours tends to make me tired and cranky. No matter how much I care about a cause, I have to set boundaries on involvement to protect my health.

Last January I asked myself, if I want to make a difference but don’t have the capacity to do so in a traditional way, what other ways are there?

In the world of the internet, it turns out, there are many ways to get involved right from your couch. I discovered an online Disability March, which, as described on its website, is “a caucus of the Women’s March open to persons with disabilities and their advocates. The group began as a ‘virtual’ march of disabled activists who could not take part in the physical Women’s March in January 2017 but nevertheless  needed to have their voices heard, and has evolved to allow disability-rights activists to come together to share opportunities for the members to engage in various aspects of activism related to disability rights and healthcare.” There is also the Facebook group “ACA Stories: How Obamacared for Me”, which is a space for stories about the positive ways in which Americans’ lives have been touched by the Affordable Care Act.

If you care about these particular issues, you can share a quick story with one of these groups, and know that you’ve helped to make a difference. If you can’t type, how about asking a friend to post for you, or to help you research other causes and groups that you can participate in virtually? Whatever it is you want to get involved in, it’s likely an online group or app already exists to fill the need.

And if you’re not yet well enough to get involved, be gentle with yourself. You are currently involved in the most important cause of your life: reclaiming your health. Once you’ve done that, you can broaden your reach. In my view, there’s no better activist than one who has been in the trenches. If you’ve fought for your life, you can fight for anything.


jennifer-crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

What to Do When You Get Bad News About Your Health

by Kerry J. Heckman
#MyLymeLife

Getting bad news is hard for anyone. For people with a chronic illness, like Lyme disease, it can happen often. Here are 8 tips to help you manage the bad news.

 

I went through three biopsies of my spine trying to find a reason why my MRI was so drastically abnormal. All three biopsies were inconclusive. This process is not for the faint of heart. It consists of fasting for an entire day, getting an IV, laying on your stomach in a CT machine, while the doctor sticks a large needle in a precise location within my back. During my first two biopsies, they took a sample of my bone, which I could feel them chip away. The sedative and twilight anesthesia helped, but caused me to throw up about an hour after I finished the procedure.

Each time I prayed for an answer to my long-awaited question, and each time the lack of a diagnosis stung a little more.

For people with chronic illnesses the medical tests are non-stop. My one good vein has so much scar tissue it’s hard to get blood from it anymore. Sometimes those test results are positive and hopeful, but many times they aren’t. The bottom line is when you get news about your health that isn’t what you wanted to hear, it’s very hard to cope with; and for people with chronic illness, it happens over and over again.

Here is some advice on how to respond:

1. Cry

You better believe I’ve cried a lot after a phone call from a doctor or an email from a lab. It’s okay to be disappointed, sad, and scared when you get bad news. Let the river of tears flow. Life is not always kind.

2. Talk to someone

When the news is bad, it can be helpful to talk to someone. This person can be your partner, parent, best friend, or a professional. Pretending you aren’t hurting and putting on a brave face won’t serve you in the long run.

3. Don’t let the test results define you

Test results are numbers on a page or the label of a diagnosis, but often these things are changeable, not fixed. I know one day my inflammatory markers will go down and the Lyme disease will be in remission. When I get bad news, I know it’s a measure of my current state and it’s only temporary.

4. Get a second opinion

If I hadn’t gotten a second opinion, or a third, or a fourth, I never would have gotten a correct diagnosis of Lyme disease. It’s also important to remember there is a time to gather new information and a time to contemplate what you know; try to find a balance.

5. Write down an action plan

When another spot of inflammation showed up on my CT scan, I was devastated and overwhelmed by the number of follow up tests and conversations with doctors that needed to take place. I was worried if I didn’t get it all done instantly something would get missed. I paused a moment and took the time to make a list of everything that needed to get done. Then, I put each item in order of importance. It helped to take all the anxious noise in my brain and lay it out in a strategic plan.

6. One step at a time

After you have developed your action plan, take one step at a time. You might not get all the calls made in one day. There may be tests that you have to be schedule far in advance or may take weeks for the results to come back. As long as you are marching toward the goal, don’t push yourself too hard.

7. Ask for help

Let’s face it, brain fog doesn’t necessarily lend itself to creating and following through on a detailed health plan. Ask your doctor, partner, or friend to talk it through with you. Maybe they have insights that you didn’t consider.

8. Look for a reason

I don’t necessarily believe everything happens for a reason. But my personal philosophy is even if there isn’t a reason, it still happened, so you have to make one.

When I had my inconclusive biopsy, a good friend said: maybe now isn’t the right time to find an answer. She was right. If I’d received a negative biopsy I might have given up the fight for answers, but since I had no answer I sought out a new doctor who ultimately led me to my Lyme diagnosis.

Each test, whether good, bad, or inconclusive is another clue along the path to recovery.

My mom recently had an abnormal mammogram and had to go through a biopsy of her own. With our stomachs tied in knots, my entire family waited for the results. We breathed a collective sigh of relief when the biopsy came back negative. When you get bad news about your health it’s important to remember that sometimes there is good news. I’ve had my share of positive test results. They’re just overshadowed by the negatives ones. Illness is a journey of ups and downs, for every dark of night there is the light of day. Waiting for the sun to come up is hard, but it’s there hidden just behind the horizon, ready to rise.


Opinions expressed by contributors are their own.

kerry-j-heckman-profile-picture_thumbnailKerry J. Heckman authors the wellness and lifestyle blog Body Mind Lyme. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.

How to Be a Good Partner to Someone with Chronic Illness

by Kerry Heckman
#MyLymeLife

How do I know how to be a good partner to someone with chronic illness? Because I have one. But that wasn’t always the case.

 

I was diagnosed with my first autoimmune disease shortly after my husband, Zach, and I got married. We’ve been married almost ten years, and I’ve been more or less sick the entire time. There was a time when Zach had very little patience with me and my ever changing symptoms.

Before I was diagnosed with Lyme disease, anxiety was one of my worst symptoms. I literally thought I was going to die. I would wake Zach up in the middle of the night, looking for reassurance for unexplained chest pain or a mole that looked different. I would jump to the worst case scenario in every situation, then perseverate on it for hours. After awhile he started walking out of the room, because he didn’t want to listen to it anymore. It felt like he wasn’t there for me.

Then, there was the year when I was really sick. I stopped being able to help out around the house and all the responsibilities feel on him. I couldn’t cook or clean, the laundry piled up in the basement. He wanted to go to concerts or out to a bar like we used to, but I was just too tired. By any definition, I was not a good spouse or partner and occasionally he would remind me of it.

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Yet something shifted after he came with me to my first appointment with my Lyme specialist. He developed patience with me. He started to listen more, and sit with me while we talked through my symptoms. Slowly we became partners in fighting Lyme.

Every day I hear heartbreaking stories of how chronic illness tears apart relationships and ends marriages. When you can’t see an illness, it’s very easy to think someone is faking it or taking advantage of the situation. Sometimes the healthy partner thinks “I did not sign up for this,” and takes off. Sometimes I think the partner leaves because he or she is not strong enough to watch a loved one suffer.

Some advice for partners:

Be there.

I’ve been known to break into spontaneous crying fits. I can only imagine it’s how annoying and frustrating that is for my husband. At first he tries to walk away and then I see the thought process going on in his mind as he slowly turns around sits down next to me. My crying fits only last a couple of minutes, then I take a few deep breaths and gather myself.

Just sitting with someone while they are breaking down is one of the most powerful things you can do, and you don’t even have to say a word.

Listen and ask questions.

Talking things out is how people process thoughts and emotions. Lyme has been described as a do-it-yourself disease. There is no standard treatment, so we have to make decisions about our treatment protocol, our diet, and our exercise regimen without much guidance. There are a lot of other things to process with chronic illness. We sometimes wonder why this is happening to us or if we’ll ever get better. Sometimes we don’t have “a point” or are not particularly good at making sense, but it helps just to talk.

When your partner asks you to read something, read it.

One of the symptoms of chronic Lyme is brain fog and we often have difficulty finding the words to express how we feel. Sometimes I find an article or blog post that I really relate to and I ask my husband to read it, so that he can understand me better. It’s a simple gesture, but it will bring you closer together. Do what you can to learn about the illness. You can even look for articles on your own, and bring them up to your partner.

Go to appointments when you can.

Like I said earlier, something changed after my husband started going to my appointments with me. I think a doctor validating my symptoms made it real for him. He knew I wasn’t making it up when the doctor said everything I was experiencing was a symptom of Lyme.

Embrace diet and lifestyle changes.

One of the most helpful things my husband has done was go on an elimination diet with me. He was having some health issues, but probably didn’t need to completely change what he was eating. It made it so much easier to do it together and we kept each other accountable.

There have been many times during this journey I have felt like a burden. Our money is spent on treatments rather than nights out, I have a strict bedtime of ten o’clock. I do not have the stamina to go to parties. But we still make an effort to make things fun, like cooking together, watching comedies to laugh together, and choosing low key events we both can enjoy.

Stand up for your partner to others.

My husband lives with me every day, while my friends see me only occasionally. He knows the truth about my illness, which I often hide from others. It makes me feel so supported when he speaks up about my illness to my friends and family. I get sick of defending myself and it’s nice that he is willing to take over.

Allow your partner space to heal.

This year my husband gave me the greatest gift he could ever have given me. He suggested I leave my job and take a part-time job. It’s allowed me the space to start the healing process.

Maybe allowing your partner to quit his or her job isn’t possible in your situation. Think about what else you can do to allow your partner space to heal. Can you put the kids to bed while he or she takes a bath? Can you help sort and pay the flood of medical bills? Can you give up a corner of your office for a meditation space? Any little bit helps.

Believe your partner, all the time, every time.

People with invisible illnesses, often feel just that, invisible. When we tell our coworkers we are in pain, but we don’t look like we’re in pain, we’re afraid they don’t believe us. A partner can be the one person with whom we don’t have to worry about being ourselves. Don’t second guess, don’t minimize, just believe.

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On the other hand, I have some advice on how someone with a chronic illness can be a good partner. Don’t expect perfection. Know that this is a hard road that no one asked for, including your partner. Express gratitude, even for the tiniest things that make your life easier.

Pass this article along to your partner. It may help to open a dialogue. However, be careful not to imply your partner isn’t doing a good job, which can easily make a person defensive. Pursue a dialogue on how you can be better partners to each other. As the patient, I have empathy for the caregiver. There is no recognition and no attention paid to your struggle. Doctors rarely ask the partner how they are feeling.

Lyme is a third wheel in our relationship. It’s something for which each person has to take some responsibility. Every day Zach is learning how to be a better husband to someone with a chronic illness. Sometimes I’m amazed at the information he has picked up about Lyme disease or my autoimmune conditions. He went from never wanting to talk about it, to bringing it up when he sees an article online.

All relationships take hard work, and when you add in Lyme it makes it ten times more difficult. While you are fighting the illness, the pain, and the fatigue, remember to also fight for each other.

Read Kerry’s previous blog, “Grieving the Loss of a Career to Chronic Illness“.


kerry-j-heckman-profile-picture_thumbnailOpinions expressed by contributors are their own.

Kerry J. Heckman authors the wellness and lifestyle blog Body Mind Lyme. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.