Lymphangioleiomyomatosis

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    My name is Liezel and I have Lymphangioleiomyomatosis (LAM) and I suffer from chronic pain. I wondered if there are others out there?

    I know quite a few LAMMIES, as we call ourselves, but not all of us struggle with chronic pain. I understand from the LAM-specialists that pain is a LAM related symptom, but I have not come across many. I would very much like  to know what type of pain others experience, where the pain is and how they deal with it.

    Na M
    Na M @nisha-m
    contributor

    The Benefits of Joining a Rare Disease Support Group

    I was diagnosed with a rare lung disease that almost exclusively affects women at the Cleveland Clinic a few years ago, and about an hour or so after the crash course on lymphangioleiomyomatosis (LAM), the specialist told me about a closed support group on Facebook. I could hardly process the epidemiology of this disease; connecting on social media with other LAM patients was the farthest thing from my mind. Almost amusedly he said, “I’ve heard they’re a fun bunch of ladies who call themselves ‘Lammies,’ get it?” My husband chuckled because apparently he got it. I wasn’t quite prepared to transition from the bad news of my diagnosis to light-hearted humor, so I gave them both a blank stare as I envisioned women over-sharing personal and banal details of their lives online. Passing judgment can come easily when you’re in a dark place. A few weeks later, despite my reservations, I asked to join the closed group on Facebook, in part because I was genuinely curious about the “fun bunch of ladies,” and also because I was starting to feel a little lonely in my dark place. Living with a rare and progressive disease that only affects an estimated 4,000 women worldwide can feel very isolating, not to mention burdensome, so I thought I’d give social media a try in hopes of lightening the load a little by connecting with others through shared experiences of LAM. Within minutes of introducing myself to this closed group, I was warmly welcomed by women from all over the world including Norway, Canada, Mexico, and Australia, to name a few. After the introductions, I did what I usually do with my public Facebook persona, which is hang out on the sidelines, scroll through posts without actually connecting with anyone or adding anything of my own. While lurking, I got to learn a lot about Lammies as they candidly shared their struggles, joys and everything real in between about their lives, which is often times missing in the public Facebook space. There were posts about relationships, struggles with coping, concerns over medication costs and their side effects, unusual symptoms followed by “is that normal?”, requests for prayers after surgeries, lung transplant announcements, updates on clinical trials, and so on. There were also posts about gratitude, inspiration, and encouragement. These Lammies left no stone uncovered when it came to raw and honest discussions about all things related to LAM. And while I didn’t know any of these women, I knew their stories well because they were my stories too. What moved me the most was how fierce these women were in their support of one another, as was evident in their quick and generous response to any post, at any time of the day. I continued hanging out on the sidelines for a while, absorbing all that was being posted, but offering very little of my own experience. Looking back, I think it’s because I hadn’t quite made the transition into the “acceptance” phase of my diagnosis. Posting advice or sharing an experience would have meant I was one of them — a Lammie — and I wasn’t ready to take on that new identity quite yet. That changed when I had my lungs collapse back to back and was hospitalized requiring surgery. There was no denying my disease after that. So, I decided to post what had happened and almost immediately there was an immense outpouring of empathy and compassion in the way of prayers, well wishes, and shared experiences. I followed up with post-surgical concerns and received just as many responses with advice and feedback. When it comes to having a rare disease, I find myself constantly having to explain the whys and wherefores of LAM and even after that, I often wonder, do you really understand what I’m going through? But with Lammies, I felt a natural sense of connection, and I remember thinking to myself as I read the responses to my posts, they get me! Perhaps more than that, I finally started feeling like I belonged to this group.  I am a Lammie after all. I think we’re all hard-wired with a need for belonging and connection with others. Isn’t that what communities and tribes are all about? That desire is especially true in the face of a rare disease where so many of us feel alone and overwhelmed, and are often reluctant to share what’s happening in our lives for fear of not being understood or taken seriously. I’m grateful that my rare disease has an online support group and that it is in fact a bunch of fun ladies. I’m a little more active these days on the Lammies Facebook page. As comforting as it is to receive advice and support from this group, it turns out that it’s more rewarding offering it up to others. And that definitely helps lighten the load of living with LAM. Follow this journey on My Life with LAM We want to hear your story. Become a Mighty contributor here . Getty Images photo via StockRocket

    Na M
    Na M @nisha-m
    contributor

    Why I Choose to Run With Lymphangioleiomyomatosis

    One of the symptoms of lymphangioleiomyomatosis (LAM), my rare lung disease, is shortness of breath. I discovered just how short of breath I can get when I started walking with my neighbor in the morning. Turns out I could handle the walking just fine, but add a conversation to it, and I sounded like a freight train. Frankly, it was embarrassing and uncomfortable, so I avoided it. Months later, a friend invited me to walk the Atlanta Beltline, a paved pathway in the heart of the city with a beautiful cityscape view. I enjoyed the company and the view so much that I didn’t realize I had huffed and puffed my way through a 4-mile walk. So, I went back by myself the next day, and the day after that. Over the next couple of weeks, I started noticing all the runners that would pass me as I walked. Pretty soon, I felt bold enough to give it a try myself, despite being short of breath. I probably ran a 1/4 mile that first time on the Beltline before I stopped. If the walk and talk combo had me sounding like a freight train, then the running was more like a turbo jet engine. Holy tornado! Could everyone hear me? Why did I think I could run like everyone else here? Could everyone see me hunched over, gasping for air when I barely ran? I felt so incredibly inadequate and ashamed. Needless to say, I walked the rest of the way. During that walk of shame back home, anxiety gave way to tears, and the sound of my breathing felt amplified. I couldn’t get home fast enough. Hearing myself breathe heavily was a painful reminder of LAM, and all the feelings of helplessness and uncertainty about a future living with a progressive and incurable disease that go along with it. Then, something unexpected happened when I got home. I felt a little lighter. That hour and a half long, 4-mile stretch, gave me a chance to think about life after my diagnosis, and opened up this frequency in my mind that I hadn’t tuned into before. I thought about how isolating it is to have a rare disease no one knows about, and how angry I am at the universe. I thought about how the uncertainty of it all just makes me freeze some days, and how every little ache or pain frightens me because it feels like another lung collapse. I also thought about how fortunate I am to be able to walk four miles on a trail nearby with incredible views of the city, and that I have great health insurance to cover my quarterly visits to the LAM clinic at Emory Hospital, which is only 10 minutes away. I remembered that I have an incredibly supportive and loving husband, and two wonderful children, and that I wasn’t diagnosed before having kids because the decision to have kids knowing that pregnancy causes progression in LAM would have been too much to bear. I woke up the next day and felt this need to go out and walk again. This time though, I went prepared with an arm band carrying my iPhone and headphones so I didn’t have to hear myself breathe. My walks eventually led to running, very slowly I should add, and over a few months, I built up to running four miles, several times a week. Those months of running brought me such a sense of clarity in my life, and it’s because I finally gave honest expression to the full spectrum of my feelings about living with a rare lung disease. I still run on occasion and often sound like a turbo jet engine, gasp for air and am deeply uncomfortable at times. I keep going because in the face of a disease that’s progressive, I’ve come to terms that my days of running may be numbered.  With all the thoughts I have yet to deconstruct in my mind, I’m going to run while I can. We want to hear your story. Become a Mighty contributor here . Getty Images photo via lzf

    Na M
    Na M @nisha-m
    contributor

    How to Share Your Diagnosis With Others

    I discovered pretty quickly that I wasn’t equipped to handle the reaction I received after sharing my diagnosis of lymphangioleiomyomatosis (LAM) with a few people. I was still processing the news myself about this rare and incurable lung disease and didn’t really have time to decide who to share my diagnosis with and how much detail to provide. I’ll never forget the look of horror on a neighbor’s face when I mentioned the future outlook of LAM to possibly include a lung transplant. When I told one friend about being given five to 10 years of life expectancy (before I found out that it was more like 20+ years), she cried and then demanded I seek a second opinion. Then there were the canned responses from a few loved ones like, “you’re in our thoughts” and “we’re thinking of you,” which may have been well-intentioned, but lacked substance and sincerity. All those expressions of shock, grief and feigned concern started weighing down on me and I couldn’t make any progress in dealing with my own emotions when I was so burdened with everyone else’s. So, I reigned in all the talk about LAM. The thing about sharing your story is that it’s your story, and you’ve got to be in charge of deciding who you trust to share it with, and how much of it you want to share. It took me a very long time before I finally got in the driver’s seat again with my story, and even then, I took things very slowly. I started with a trusted group of friends and family and would share a little bit at a time to test the waters. Depending on people’s reactions, or if they had questions, I’d share a little more because I realized that not everyone is comfortable with or even interested in the details. And I respect that. Even within that trusted group, I was only comfortable sharing intimate details of LAM with a select few because delving deep is a very uncomfortable, messy experience, that leaves you feeling vulnerable and raw. Perhaps the worst feeling is when someone isn’t capable of offering you what you need in that space, whether it’s a shoulder to cry on or just an empathetic ear. That’s why who you choose to take the deep dive with is such an important decision. The reactions I get still run a gamut. I’ve had a few people tell me that I need to think more positive thoughts as though somehow my attitude could control the progression of LAM.  “It’s mind over matter,” someone once said. Perhaps he was suggesting I should consider denial. Then there was the friend who became a LAM expert and started sending me emails on LAM-related research, news and events in order to keep me updated. I felt like she wasn’t confident in my ability to stay on top of my own disease. Another friend pointed out that maybe this was her way of coping. Some have been dismissive about the seriousness of LAM, commenting on how I look like I’m doing fine. I suppose this is not an uncommon reaction for someone whose disease is not obviously symptomatic. Some people have offered unsolicited advice on how to improve the symptoms of LAM and I have to say, I’m pretty open to trying anything that doesn’t have irreversible effects. In case you’re wondering, I’ve tried abdominal breathing, yoga, chia seeds, reflexology, journaling, mantra recitation, fish oil, self-help books, and long walks. Once in a while, I’ll come across those who surprise me, with follow-up questions about how I’m coping, or whether I’ve told my children, or if there are clinical studies and trials for a cure. A mom at my daughter’s school asked if there was a foundation that she could donate to when I told her about LAM. Occasionally, I’ll come across someone who has their own story to share, like the woman who told me about her young nephew’s battle with cancer, or the friend who couldn’t conceive a child and had to eventually grieve that loss. I am filled with gratitude and am honored to hear those stories because I know how hard it is to share. For every reaction riddled with judgment, horror, or awkwardness, I have many more positive and compassionate ones. To be honest, are those other initial reactions so bad? Maybe they’re just well-intentioned thoughts from people striving to find a connection, or a reflection of how they cope. I don’t think empathy comes easily or “on-demand” for a lot of people, and in our busy and distracted lives, it takes an enormous effort to shift gears in order to tune in to someone’s emotional cues. I’m in no position to judge someone’s emotional ineptitude when I’ve been known to smirk at the most inappropriate times in reaction to unexpected news. So, I get it. Being on the receiving end of the reaction has taught me a great deal about tact and mindfulness, and I hope it carries over in times when I’m called upon for a little empathy. I’ve loosened up the reigns these days, and often share an abridged version of my story where I deliver a quick fact-based review of LAM when asked about my disease. For the trusted and empathetic few who can handle the weight and can stand being uncomfortable, I take them on a deep dive into my journey of living with this disease. Most people fall somewhere in between. We want to hear your story. Become a Mighty contributor here . Getty Images photo via DragonImages

    Na M
    Na M @nisha-m
    contributor

    Using Meditation for Lymphangioleiomyomatosis

    I participated in a study conducted at the National Institute of Health (NIH) a couple of years ago to determine the disease process of lymphangioleiomyomatosis (LAM), and during my stay, I had a chaplain visit me in my room. She was a lovely, middle-aged woman with short hair whose voice was as soothing as her overall presence. She moved around the room gracefully and made no gestures with her hands as she spoke slowly, in a mild and even tone. All of this is in sharp contrast to my energy. I tend to use my hands a lot when speaking, and I rely on my facial expressions to not only enhance my speech, but often times in lieu of a verbal response – sort of like a real life emoticon. During her visit, the chaplain brought up meditation as a way to cope with LAM and to invite stillness in my life. Maybe she interpreted my wild hand and facial gestures as a cry for help. It’s no surprise that I responded with “I can’t sit still long enough to meditate. It’s not my thing.” She smiled knowingly and said, “You don’t have to be still to be still.” And that’s when she introduced me to mantra recitation. If you’re anything like me, you’re thinking, here we go with the “woo woo” stuff, which was precisely my reaction. She went on to explain how reciting a mantra is simply a form of meditation that helps you still your mind, and you can do that without having to sit still. The truth is, my mind is constantly racing throughout the day and this rapid-fire thinking often takes energy and attention away from my present being. I remember a time before the Internet, when I’d rewind my cassette player over and over again just so I could figure out the lyrics of a song. Or I’d fast forward so I could skip ahead to the next song. It wasn’t very often that I actually listened to a song in its entirety. Over time, the symbols on both buttons wore out, and yet the “play” button remained in tact. Apparently not much has changed with the way I think, now that I’m an adult. I’m either engrossed in Monday-morning quarterbacking or I’m in fast-forward mode struggling with to-do lists. On my worst days, I’m agonizing over my future health outlook because of LAM. And what I’ve discovered is that you can’t hit “play” on your present life at the same time as rewind and forward. You have to pick one. This is where mantra recitation helps, as the chaplain explained, because it brings the mind’s focus back to the present and helps still the mind from racing. It can also serve as a powerful reminder or affirmation in your life. And if you do it often enough, you can train your mind to use your mantra as your fallback thought. She suggested I try the mantra “All will be well,” which is a prayer or promise of hope, that all will ultimately be put right by the universe, regardless of the day’s circumstances. As though sensing my resistance, she followed up with “If you can’t sit still to do it, then do it while you walk or run, or while you fold laundry, or pretty much whenever your mind wanders and leads you to worry or be anxious.” In my case, that means all day long. Much to my surprise, I do find myself repeating “All will be well” every once in a while, especially when I get stuck in fast-forward mode with an overwhelming sense of despair. It does restore my hope in what tomorrow might bring — mostly. But I must confess, there are times when the claim of “All will be well” seems too distant and even incredulous. I suppose you could argue that’s when I need to recite the mantra the most. As much as I tried, this mantra didn’t cut it when I discovered my lung function had declined and that would be my new normal, or when the oncologist told me we were out of treatment options for my mom’s brain cancer. Let’s face it, in the low points of my life, I can’t always find hope in my future when I have a rare, progressive lung disease for which there is no cure. In those moments, I need something more immediate and within reach, so I’ve learned instead to turn to “Today I’m here.” This mantra is like a jolt because it forces me to examine where I am in the moment – sort of like hitting the stop button and then hitting “play.” It takes away any judgments and second-guessing from the past. It makes no promise of what the future will bring. Today, in this moment, I’m here, and that’s all I can control. There’s also an acceptance with a note of gratitude to this mantra, which is liberating. No matter what my lung function test or kidney ultrasound indicates at my next doctor visit in three months, today, I’m here, and in this moment, I’m going to choose to be present in my life. I can’t second-guess if we could have caught the progression of my mother’s brain tumor any sooner because today we are here, and I have to enjoy what precious time we have left together. Those days when I can’t run because it feels like my lungs just won’t cooperate, I walk instead. I remind myself that while I may not be able to run at this moment, at least I can walk, and I’m OK with that. I choose to hit “play” and repeat “Today I’m here.” We want to hear your story. Become a Mighty contributor here . Getty Images photo via Tverdohlib

    Na M
    Na M @nisha-m
    contributor

    Receiving a Lymphangioleiomyomatosis Diagnosis

    I was unofficially diagnosed with a very rare lung disease, lymphangioleiomyomatosis (LAM) in mid-May a few years ago at a pulmonologist’s office in Atlanta. It all started with a pesky cough that just wouldn’t go away, so I visited my primary care doctor. He wasn’t available that day, but his RN on staff was and she felt that something just wasn’t right when she heard my lungs so she suggested getting a CT of my chest in order get a closer look. Ordinarily, a persistent cough would not lead to a CT right away, but since I’d had a history of unexplained lung collapses, the RN felt it would be prudent to investigate further. The CT results concerning, so I was asked to follow up with my pulmonologist who suspected right away that I had LAM, but confessed that he had little knowledge of this rare disease. Prior to this, my right lung had collapsed back in 2003 and 2006, both for which I had to undergo surgery. At the time, my doctors could not explain why this was happening. During the 2006 procedure, I had a lung biopsy done to test for this very same disease and the results came back negative, showing no LAM cells. You can imagine my complete and utter shock when this doctor told me that the CT showed I had LAM and the disease had progressed.  Back in 2003 I had three cysts on my lungs, in 2006 I had a handful, and in 2012, there were too many to count.  “F***” I said out loud to him and he smiled awkwardly, offering no words of comfort — not that I would have paid attention. Is there an etiquette to how you respond to a life-altering diagnosis? If there is, then I clearly missed that lesson on conventional norms because during that visit, all my filters came undone and  I couldn’t get a thought out without inserting expletives. So naturally, the first thing that came to mind after this doctor announced that he suspected I had LAM was how did this get missed? I unleashed my wrath on him. After reigning in my misdirected anger, I inquired about my outlook. He prefaced his response by admitting his limited experience with LAM because it’s so rare. It was his understanding that life expectancy was an average of about five to 10 years post diagnosis, but there were some promising studies out there. He continued on about the clinical trials and research, but really, who could pay attention after his announcement of life expectancy? Besides, I was too busy working out the numbers in my head. Was it five years post diagnosis from the 2006 biopsy or 10 years from the 2003 lung collapse? What? This word problem made no sense and my computation skills failed me. He did mention two things that stayed with me. First he said, “Don’t believe everything you read on the Internet about this disease. In fact, stay away from googling it because there’s a lot of misinformation out there.” Next he said, “Don’t think about having any more children because pregnancy is known to cause progression with LAM.” If you’re anything like me, when someone tells you not to do something, that “thing” is amplified and it’s all you think about doing, which is precisely what happened. I got on the Internet as soon as I got in the car, all the while, thinking about having a third child, which was not really even on my radar screen. It’s like being on a diet and being told not to think of ice cream. To put it this way, for a period of two weeks, until I flew out to see a specialist at the Cleveland Clinic, I binged on ice cream. All. Day. Long. Did I mention my husband was not at this initial visit? I told my husband to skip this one. Between week-long hospital stays for surgeries, doctors appointments, follow-ups and more doctor visits, we really didn’t expect to learn anything new about my lungs that we didn’t already know. After that doctor visit, I decided not to meet at home where the nanny was watching the kids. We didn’t want to give the kids any cause for worry, so we decided to meet at our neighborhood Panera for lunch, because where else do you share this kind of news? We stood in the Panera parking lot while dissecting the hows and whys, and sprinting through the stages of grief, not in any particular order. He was in shock, and couldn’t believe this was happening. I was angry, and blamed all the doctors for not figuring it out sooner. Maybe we should have sought a second opinion after the lung biopsy came back negative, or continued on with investigating lung collapses, and so on. The more we talked, the more we started to become aware of the gravity of this diagnosis, until eventually the back and forth slowly died down, making way for some much needed tears for both of us. My husband and I flew up to the Cleveland Clinic two weeks later where I received the official diagnosis. By that time, I had binged enough on Internet research to know I definitely had LAM. The game changer for me was in the numbers. It turns out life expectancy with LAM is actually an average of 20+ years post diagnosis, instead of five to 10.  I like those odds way better. We want to hear your story. Become a Mighty contributor here . Getty Images photo via coffeekai

    Na M
    Na M @nisha-m
    contributor

    When the Emotions of Living With a Rare Lung Disease Hit

    I went out to lunch with a friend some time ago, and over kale salads and mineral water she asked, “So, how are you doing?” I took that as my invitation to lament when I think she may have been looking for something a little more uplifting. I responded with how isolating it’s been living with Lymphangioleiomyomatosis (LAM), my rare and progressive lung disease, and how every sharp pain feels like another lung collapse. I told her about how I’m so tired some days that I have to lie down to take a nap. And then I wept soft, unexpected tears. My brief public display of emotion left me feeling embarrassed and maybe even a little ashamed, which is probably why I quickly said, “I’m sorry,” after regaining composure. While I may have felt self-conscious of my tears, in that moment, those tears were a genuine expression of how LAM was impacting my life. And yet, somehow I felt the need to apologize. Perhaps it was because I sensed my friend’s discomfort, or maybe it’s because I grew up in a culture where crying in front of others was seen as a sign of weakness or worse – emotional instability. Or maybe apologizing was a way to reign in the tears because I wasn’t ready to release the floodgates of dealing with my feelings over LAM, certainly not over kale salads. Regardless of the reason, I know that those tears left me feeling a little less stoic, and a lot more aware of my grief. Not long after that lunch, I flew up to Maryland for the first time to participate in a study conducted at the National Institute of Health (NIH) to determine the disease process of LAM. After four days of being poked, prodded, scanned and examined, despite my gratitude for the opportunity to participate in the study, I felt heavy and laden with all the newly acquired knowledge about this lung disease. I was on a flight back home that afternoon and before the plane even took off, I started to cry. Big, fat, messy, and inconsolable tears that leave you looking battered. I was overcome with a sense of despair, and in the absence of a tissue, I used my sweater sleeve to repeatedly wipe my face off raw for the duration of the flight. And while I had a slightly larger audience to witness my crying, they were all strangers to me, so I released the floodgates – without apologies this time – for an impressive two and a half hours as I gave in to overwhelming sorrow. As messy as that whole experience on the flight back home from the NIH was, I felt so intensely alive after crying out in grief. Because the truth is, I over scheduled my life for a period of two years in avoidance of this disease, which left me devoid of all feelings – good and bad. After that flight, for the first time in a long time, I actually felt my heart ache from the sadness, anxiety, pain and all the other toxic emotions that I locked away. It’s as though my emotional batteries were recharged after being numb for so long in reaction to LAM. While I haven’t quite had a marathon crying session since that flight, I do find myself tearing up more often in moments that touch my heart – and not just moments of sadness, but those of joy and gratitude as well. I guess a “jump start” to your emotional batteries will do that. Sometimes just sitting in the car listening to a song will trigger nostalgia and make my heart swell as I cry. I’ll tear up when I go for a long walk or run on occasion, usually because that’s when I do some of my best thinking. I cried when my son told me that his entire class prayed for my well-being when I was in the hospital because of a collapsed lung. The other day I told a friend about my mother who’s battling cancer, and how we often hold hands in silence. I told her that while I sometimes hope she’ll impart words of wisdom during those moments, perhaps the unspoken lesson she’s been trying to teach me is to learn to be still. My friend wept. As did I. This time I didn’t apologize for my tears. Follow this journey on My Life With LAM. We want to hear your story. Become a Mighty contributor here . Gettyimage by: kieferpix