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?” 

3 comments:

  1. I’m an OCD patient and have panic attacks several numbers of time and almost gave on this. Your blog really motivates me, I should not lose hope and I think I won’t. I really appreciate the way you describe the ”ways to help panic attacks” . Thank you.

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  2. Panic disorder is different from the normal fear and anxiety reactions to stressful events in our lives. Panic disorder is a serious condition that strikes without reason or warning. Symptoms of panic disorder include sudden attacks of fear.

    Controlling anxiety attacks

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