Sunday, October 13, 2013

Guest Post Part II

Here is Part II of guest blogger Jamie's story:

“Have you ever had a panic attack?"

A panic attack? Like, a crying screaming tantrum? I was so confused. My whole body was shaking. How could that have been imagined. Eventually, the paramedics filtered out and the house was quiet. My husband had been notified and was driving home from a nearby port where he was spending the night. When he got home he demanded I go to the Emergency Room, angry at me for the false alarm. I went, waited, did another EKG, and was told the same thing, by an aggravated nurse with absolutely zero sympathy, “sometimes chest pain is not caused by the heart; here’s your discharge papers.” Diagnosis: Anxiety. Go home crazy girl.

That night I could not sleep. Every time my mind would start to drift into dream land my body would jerk awake as if sleep would bring imminent death. It’s not that I was experiencing insomnia… my body, literally, would not let me sleep. I tiptoed upstairs, shook my husband, and asked: “will you please come and sit with me? I just don’t feel good.” Annoyed, he shrugged me off, said “take a Tylenol,” rolled over and went back to sleep. This is the point where I realized I would be on my own with this battle. So I returned downstairs where I sat alone, dizzy, scared, exhausted, and now afraid to sleep. Something was horribly wrong with me, and I needed to see the doctor.

So, that is the back story. Symptoms I experienced during the following months: chest pain, inability to sleep due to that weird impulse to jerk awake, constant vertigo, ringing in the ears, a pounding, flip-flopping heart, an unusual post-nasal drip, a sensation of suffocation, recurring attacks where I would race through the house with my finger on the send button for 911, pacing, trying to calm myself, a fear of driving (passing out at the wheel), grocery shopping (not sure why), taking a bath or shower (passing out and drowning), dying with my children trapped in the house alone (leaving windows open, even in cold weather, so others might hear their cries).

One evening, while sitting slackjawed at the dinner table, my husband lost his temper with me again. I was drawn deep inside of myself, listening to the unusually chaotic thudding of my own heart, while he was telling me a story. He was angry with me for not responding, angry about the whole overly dramatic ordeal, disbelieving, frustrated, and not able to understand. I apologized, brought my mind back to the table, and tried to present as a normal functioning human being. I felt so incredibly scared and alone and he, the one I needed for support, was not interested in it. Panic Disorder is not like cancer or pancreatitis. You don’t receive get well cards; no one calls to see “how are you doing?” Nobody talks about crazy. It’s the proverbial elephant in the room. You are on your own with this one, honey.

To compound the stressors-- crazy, grad school, and new baby, my beloved grandmother called to tell me she was dying from cancer. My mom said she would need help and I said I would fly home to stay with her, since I wasn’t currently working. I was so terrified on the flight. What if I had a panic attack on the plane? I was responsible for the two kids I was travelling with. What if I became unable to care for them? What would happen? But, as miracles do happen, I arrived safely on the ground and into the safety of my family home. But it was no peaceful place, and we all grappled with our emotions, watching my grandma’s swift decline and passing, only three weeks after her diagnosis of cancer.

These distractions did not diminish my own medical concerns. I was hyperaware of everything going on with my body. I often felt like I was in the same boat as my grandma and feared for my own death nearly as much as I feared for her. Together we shared a fear and curiosity of the great unknown. My grandma, much braver than I, knew her fate and faced it smiling, with humor. But as we sat one morning, flushing giant clots of blood from her catheter, she told me how scared she was, and I felt a deep understanding and sense of camaraderie that she would never know. I knew the fear of dying, because I felt it too. With tears we concluded that everything would “be okay.” I don’t think she ever spoke of that fear again. She passed with her family surrounding her, a smile on her face, making light jokes only hours earlier. In her passing there was a great peace. She had crossed her T’s and dotted her I’s, ensured everything was in order for her departure, and then, she was gone. And shortly after her funeral I was going too; back home to face my own demons, and prepare for our upcoming transfer from New Jersey to Michigan.

I checked into the ER again and when the receptionist asked me what was wrong, between sobs I drew imaginary circles with my finger around my ear—the international sign of “crazy.” I now knew it wasn’t my heart, but my mind. I was not reassured. Then, the most amazing thing happened; the ER doctor prescribed Xanax. After so many months of chaos I experienced sleep; deep, uninhibited, fearless, dream sleep. Whoa. It really is in my mind. I began seeing a psychiatrist who immediately diagnosed me with panic disorder— I met the criteria completely. He laughed and assured me I was not “crazy,” as I felt.

I worried I was having a “nervous breakdown,” or a psychotic break, I worried they would take my children away. A regimen of low dose Klonopin brought me back into reality. I was able to function--so many of my symptoms of imminent death dissipated. Before the medication I was afraid to look in the mirror because I imagined an emaciated, red eyed, balding, sickly person would be standing there; but when I looked, it was just me, looking perfectly healthy. How could I feel so deathly and appear so normal—a few pounds lighter, maybe even better than normal. With medication, I began to feel like the person in the mirror again. Life was nowhere near “normal,” I still suffered through panic attacks, but I learned to do it silently. I began to recognize this sense of imminent doom for what it was—a physiological response. Fight or Flight. A whole variety of physical responses to some imagined danger: Hyperventilation, palpitations, chest muscle tension, pupil dilation, the urge to run, save my children, etc. As I grappled with this reality, I began to put my life back together.

Moving to a new location helped immensely. Finishing my graduate work was also a major burden lifted. I feel safer in this new setting. My husband’s schedule changed and he now comes home every evening. I began seeing a therapist, who I lovingly call my “emotional prostitute’’ the one person I can share these ridiculous fears with (for $180.00/hour). I’ve made the mistake a few times of trying to tell friends about these problems (especially after a few drinks), but I feel like such a fool as they become awkward and quickly change the subject; shutting out my heartfelt confessions. I realized, of course, that hearty minded people cannot understand what it feels like when your mind betrays you; when the only safe haven you have becomes your personal prison-- the feeling that you cannot trust your own body to do what it supposed to.

To wrap this up I would like readers to know that I write from a much more comfortable place than I was in a year and a half ago but I am not a cured woman. I am slowly weaning myself from the medication that has been my crutch for so long. Simple life transitions will set off panic attacks (much more minor than before, of course). I feel the warmth of blood flowing through my body with each unnecessary dump of adrenaline, focus on my breathing, and search for a mental distraction. I find great relief in the escape of a good book or a funny TV show. There was a time when I was crashing through the rapids in the river of my life without any control, holding on through a terrifying ride. Now, the waters are calm and I’m able to navigate around the obstacles, relax a bit, and enjoy the scenery.

My marriage has suffered greatly and I am not sure where to begin with repairs. While my husband has likely dealt with anger and frustration at my new distance and fragility I have struggled to come to terms with his hostility toward me in my time of need. I find most of my thoughts still revolve, selfishly, around my own needs. Without distraction I will find myself with furrowed brow, trying to mentally solve some unknown mystery; to figure out what in my life made me break and how I can fix it. These memories I’ve shared were painful to think about, but they are, in fact, just memories. The solution, I believe, lies in the future. I hope that by writing down the past and sharing it here I will be able to leave it behind, focus on my family, my marriage, and the rest of the world that I’ve ignored for so long. I hope others will share their stories and move on with life, as well.

When the dangers are behind us the only thing left we have to fear is fear, itself.


-Jamie M.

Tuesday, October 8, 2013

Guest Post Part I

Hi everyone,
I have talked a lot about my own experience with panic disorder on this blog and I am pleased to share the story of one of my followers and her journey with panic disorder.  You will see a lot of similarities with my story - I think it takes most of us a while to realize (and even longer to accept) that all of these symptoms we experience are due to an anxiety disorder, when it seems so obvious that it is a heart attack or tumor or whatever else.

Here is Part I of Jamie's story:

I’ve been given the opportunity to share my personal experience as a guest contributor in this blog. I don’t have a wealth of knowledge or understanding of this disorder. I can’t tell you why it happens, what causes it, how to fix it, or if it will ever really go away; what I do have, is a story, a grudge, and a desire to share my most personal and private fears and frustrations someplace where people might relate. For a year and a half I have been, largely, alone in my struggle with Panic Disorder, and have triumphed through many harrowing private battles. That is not to discredit the few saviors who have helped me; relative strangers who have watched my children, driven me to the Emergency Room, offered companionship in my most frightening hours. My parents who sat with a phone cradled on exhausted ear during late night hours while I begged them not to hang up the phone… just in case. I hope this story will benefit others who share my condition, but I am not writing to you. I am writing to the other 98% who are never likely to read or understand-- the people in my life who are strong and secure inside of their own mind and body. The fearless, fortunate friends, who would secretly roll their eyes or shake their head with disgust if I admitted that I made biweekly visits to a therapist, or visited an emergency room three times with no legitimate emergency except a vague certainty that I was dying.  These might think… “Here is a fragile, dramatic, attention seeker, feigning an imaginary ‘disorder,’ for attention or sympathy. A panic attack is nothing more than an adult having a tantrum; time to be a big girl; grow up, deal with life.”

 Many people might think this way. These are the same thoughts I, myself, might have had a year and half ago. I will admit that I have had my share of grown up tantrums. Fear of a reality, emotional turmoil, frustration… that is not panic disorder. Panic disorder is life and death. I am dying… right now. I can’t figure out what is going on, but it hurts, it’s not right, and I’m scared. It is serious. I need to get help. Now!

The grudge I mentioned is against my hearty, strong minded friends. I always thought I was one of them; I could handle my share of stress. Admittedly, I’ve always been a nervous person, but it never impacted my life in any profound way. In my younger days, especially in college, I was prone to indulging in an occasional dramatic tantrum when life’s typical stressors (exams, boys, sorority drama, overcoming an addiction to cigarettes) seemed insurmountable. But those raw emotions seem to have gone dormant in later years—thankfully. For several years I lived a quiet, ordinary, and contented life with normal stress, normal reactions, and a normal functioning mind. Then suddenly, something changed. Snap.

 My fear was borne of love: A complex pregnancy due to a rare blood incompatibility, weekly visits to a specialist two hours away, a military husband often away and unpredictable, add in work and grad school for spice, and finally, the welcome of a medically fragile baby girl whose life depended on my action and attention. After being anaesthetized during an emergency cesarean gone horribly wrong I woke up alone in a room without a baby. When asked about the baby, nurses skirted around the answer; “Yes, it’s a girl. No, you can’t see her yet; the doctor will be in to talk to you.” She was, I found out, receiving the first of many transfusions; a baby who did not produce red blood cells; a condition known as Hemolytic Disease of the Newborn. Her survival depended on transfusions. Of course I only got to see her for a few minutes that evening, four hours after her birth, before they transported her to an Intensive Care Nursery in Philadelphia…to another state… two hours, an eternity, away.

 I was held prisoner in the hospital for two days, away from the one person in the world who needed my love the most. Those horrible pregnancy books that tell you how important immediate physical contact is with a baby and her mother and how much nutrition is gained from that first colostrum filled nursing session… they made my two days without a baby so much harder. They said I would be able to bring any breast milk I could produce with me as soon as I was discharged, so I worked with that Medela until my nipples bled, but nearly no milk. Finally, after two days, they let me out. Armed with a purse full of mostly empty bottles representing my extensive pumping efforts, we headed straight to Philadelphia and a dirty motel 6 offering us a room for $25.00. As we left the hospital I struggled to hold back tears… leaving without a baby; it’s weird and heartbreaking.


Of course we drove straight to Philadelphia and began the daily commutes to the city (or, when I was lucky, the hospital would allow me an overnight stay). Long story short, we had our little girl home in a week. She was perfect and content—but did not make her own blood. I took her for weekly blood tests, but in the mean time we watched her go from cherry red (full of new blood) to cold, pale, and quiet (ready for a refill). And when the lab results would come back that she needed a transfusion again I would have to drop everything and bolt to the Children’s Hospital in Philadelphia, two hours away, to keep her going. Of course, with a husband gone on a boat and a second child at home—this is no easy task. As an introvert I had very few close friends and hated to ask for favors… who would watch my son if she needed a transfusion? Surely anyone would have in our military housing, but I spent hours dwelling over this scenario, just as I had throughout the pregnancy. “Who will watch Collin if I go into labor? Will Nick be home?” And on my darker days…“Will he care if he can’t be there?”

Fortunately, this scenario never came up. Miracles happened, stars aligned, and he was home each time Cameron needed an extended hospital stay. A team of brilliant doctor’s hemmed and hawed behind closed doors on solutions to Cameron’s dilemma. They showed me charts they’d created and discussed research on the condition. Then, they introduced me to EPOGEN.  Epogen is a very expensive medication used to treat anemia caused by chronic kidney disease in patients on dialysis to lessen the need for red blood cell transfusions. Believe me, I googled the shit out this one! Of course, my daughter did not have chronic kidney disease—what the doctor’s proposed was an off-label-use with the intention of kickstarting my daughter’s bone marrow into production.

Of course the first thing the EPOGEN website said: Using EPOGEN can lead to death or other serious side effects.  And they wanted ME to inject her with this medication, twice a week! Every time I looked at the needle I’d get woozy. She looked up at me full of trust and love, then WHAM! I‘d poke the needle into her fat little leg, inject the medication, and the hysteria began. “Mommy, what did you do to me?!” I’d like to say that, after a few turns of this it became old hat, but that would be a lie. I was sick to my stomach each and every time. On top of her weekly blood tests at the lab, IV sites on arms and feet, she was a baby pincushion. Then, after four months, the most incredible news: Her red blood cells were increasing with no transfusion. She was creating her own! I was shaking with joy and relief. Our nightmare was going to have a happy ending. Now we could have a normal life with our new baby. Except for this new nagging issue… my chest pain.

Not indigestion, actual pain; acute pain in the left side of my chest. [Enter Google.] Search: Chest Pain. NO, don’t do it. You won’t like what you see, and neither did I. Every site advised medical consultation. So, as primary caretaker for my two kids I felt it was my responsibility to stay alive, went into the doctor right away to complain of this new pain. EKG was fine. The doc sent me on my way, “sometimes chest pain is not your heart.”  So, what the hell else could it be? That night, after tucking the kids into bed I sat down to do some more googling; that is when the nightmare unfolded. The chest pain was almost constant now; I worried and worried.

Fortunately, this scenario never came up. Miracles happened, stars aligned, and he was home each time Cameron needed an extended hospital stay. A team of brilliant doctor’s hemmed and hawed behind closed doors on solutions to Cameron’s dilemma. They showed me charts they’d created and discussed research on the condition. Then, they introduced me to EPOGEN.  Epogen is a very expensive medication used to treat anemia caused by chronic kidney disease in patients on dialysis to lessen the need for red blood cell transfusions. Believe me, I googled the shit out this one! Of course, my daughter did not have chronic kidney disease—what the doctor’s proposed was an off-label-use with the intention of kickstarting my daughter’s bone marrow into production.

Of course the first thing the EPOGEN website said: Using EPOGEN can lead to death or other serious side effects.  And they wanted ME to inject her with this medication, twice a week! Every time I looked at the needle I’d get woozy. She looked up at me full of trust and love, then WHAM! I‘d poke the needle into her fat little leg, inject the medication, and the hysteria began. “Mommy, what did you do to me?!” I’d like to say that, after a few turns of this it became old hat, but that would be a lie. I was sick to my stomach each and every time. On top of her weekly blood tests at the lab, IV sites on arms and feet, she was a baby pincushion. Then, after four months, the most incredible news: Her red blood cells were increasing with no transfusion. She was creating her own! I was shaking with joy and relief. Our nightmare was going to have a happy ending. Now we could have a normal life with our new baby. Except for this new nagging issue… my chest pain.


Not indigestion, actual pain; acute pain in the left side of my chest. [Enter Google.] Search: Chest Pain. NO, don’t do it. You won’t like what you see, and neither did I. Every site advised medical consultation. So, as primary caretaker for my two kids I felt it was my responsibility to stay alive, went into the doctor right away to complain of this new pain. EKG was fine. The doc sent me on my way, “sometimes chest pain is not your heart.”  So, what the hell else could it be? That night, after tucking the kids into bed I sat down to do some more googling; that is when the nightmare unfolded. The chest pain was almost constant now; I worried and worried.



Suddenly, and unexpectedly, the world came crashing down. My chest was crushing in on itself, blood rushed up to my face. Heart attack. What would the kids do if I died here in the living room? With little hesitation I ran to my phone and dialed 911.  Suddenly a gaggle of men filled my living room, slapping sticky electrodes on me, running an EKG… my three year old son was running around in excited circles,  everything was fine. Fine? The EMT looked at me, and asked: “Have you ever had a panic attack?”