Monday, September 12, 2011

#93 - My Heart is Touched

I've found myself to be living a beautiful life in spite of Addison's disease and other major hurdles with my health. I am not a person you would look at and suspect that there was even a problem. Being able to "fake it until I make it" has been my mantra which translates to...even when you don't feel well or when you are struggling, the best route to take is to rise above it and carry yourself as if you are without such problems.

The truth is, there are days when this philosophy won't work for me because I just can't rise above my given situation, but you can be guaranteed that I am trying to lift myself up and out of it. Embracing the "fake it until you make it" mindset has been a life-saver for me because if I give in to how I actually feel and submit to my set of circumstances instead of trying to temporarily leave it behind for a bit, I would be smothered and defeated by my challenges.

When we have a family gathering, I like to join in on the fun. I'm not one to sit back and watch. Yes, I hurt. My body has been sliced and diced and pulled apart and rebuilt and it is a definite hardship to act normal, but I do it. The simple ACT of being normal can actually provide a boost of healing and mental equalizing that is needed to keep moving forward. Depending on your situation, the little normal act may simply be to read a book or to sing out loud to a song you always loved or to have a conversation with a friend and have none of it be about you or your problems.

Sometimes, I long to get out of the house and do something mundane, such as go to the grocery store. Even better, I love a leisurely trip to the library or to take a long walk in the park with my walking stick in hand. I like to go to the beach and look for shells. On our property, I have such a great time in the creek looking for beautiful stones. If I can swing a night out to see a live theater performance, then I am transported away from my aches and pains for a brief time...I refuse to allow the uncomfortable seats with my reconstructed spine discomforts to get in my way of enjoying the performance. This requires focus. I've worked hard to keep my mind headed in the direction I prefer, and let me tell you, for a person who has plenty of painful distractions, it is not an easy task.

One thing that I love to research and focus on are the triumphs and challenges that other people have worked to overcome, and I'm thankful they share their stories with us. Like my momma would say, "Someone else always has it worse." I look at the circumstances of people who rise above their misfortunes and I am given a boost to keep doing the same.

This week, I was going through old magazines in the house...cutting out decorating ideas, simple recipes I'd like to try and things I would want to remember. So, I was browsing through a February 2007 issue of Woman's Day magazine and I came across Ginger Zimmerman of New York. I read the short article next to her standing in a beautiful red dress representative of women making a stand against heart disease. I was stunned by her circumstances. If anyone can rise out of their circumstances and move forward in life through hardship, this woman teaches us that we can indeed do this.

Photo from website.

After reading this short article and cutting out the page with her story, I began to research her further and my admiration and amazement at all this woman went through is another gentle form of encouragement for me to keep moving forward in my own battle.

Ginger, a young woman of about 29 years of age had a beautiful life. She lived happily with her husband, David, who worked as an offshore oil surveyor in the Gulf of Mexico and they had three beautiful sons who were 13, 9 and 4 years old.

In 1993, at the young age of 29, Ginger began having chest pains and shortness of breath after simply walking across a room. Daily life had become a struggle. But a diagnosis would not come quick for Ginger. She, the same as in my situation, suffered needlessly because her physicians could not get past their "youth discrimination" barriers. I was amazed that she experienced the same thing I did...she experienced doctors who could not imagine anything being truly wrong with a woman who appeared rather healthy. It is difficult for a medical community to HEAR a young, vibrant woman describing her ailments when all they can focus on is her age and how she doesn't appear "sick" enough to warrant them thinking out of the box.

Doctors would tell Ginger that the extreme exhaustion she felt was due to a thyroid condition, which was an easy answer, and she was even labeled a hypochondriac. But, these answers were certainly not sufficient. In my case, I discovered that even though I had been suffering long-term and had been extremely pro-active in trying to get an answer from numerous doctors, I was facing a losing battle because too many doctors were incapable of listening to my symptoms, they even disregarded my carefully written lists that described my symptoms...most doctors were simply unable to go beyond their own limited mindsets that are more apt to label a young woman with an unknown illness as "stressed out" or a "hypochondriac." However, I was stunned to read that Ginger had tried for nearly four years to find answers as to why she was deteriorating. She knew something was wrong. Of course she knew something was wrong, but getting a doctor to listen to her and take her seriously enough to take pro-active diagnostic action would be the greatest challenge of all.

I was greatly saddened to read her story and to know that our battles to be diagnosed were so similar. It took me going into a code in the hospital before my treating medical team of the moment really got it...I knew what I had been talking about, I had been in the process of dying. It is always hard to hear of other people who had been seriously ill and suffered on top of it as they were misdiagnosed or shoved aside by ignorant physicians with crass attitudes.

No one took her seriously until it was nearly too late and she was dying, then they discovered that her heart was working at only 15% capacity. I can only imagine the shock, horror, and fear that she must have felt after learning that she needed a heart transplant. Living in the hospital, she had to be hopeful and patient for 3 1/2 months while waiting for a donor. This waiting time had to be agony because a heart transplant was her only hope for survival.

After the donor heart was found, her husband's company arranged to have a helicopter fly him to shore so he could rush to the hospital to be with his wife before she was taken into surgery for her heart transplant. He nearly missed seeing her before the surgery because his helicopter had been forced to make an emergency crash landing in the water. I can only imagine the sense of urgency and panic of the helicopter crew as they were going down, especially because they were trying to get this husband to his wife before she was sent in for her heart transplant. But, by some miracle, he survived the crash landing and he made it to the hospital as they were rolling her out into the hallway for the surgery. In the midst of her being wheeled into surgery, he was telling everyone that he was so lucky to be alive and told them about the crash...the reason for him running late and arriving at the very last minute. He got to be with his beloved wife before she went into surgery.

With a headache, David was able to see his wife before and after the surgery. I'm sure he was worried sick about his wife, probably hoping and praying that she'd survive so they could have another chance together. I'm sure he'd missed having his wife at home...she'd been in the hospital for months.

In an interview, Ginger says, "Little did he know that he'd actually suffered an impact tear to a small artery in his brain that would prove to be inoperable and it actually took his life nine days later."

Ginger had been able to speak with him one last time before he died as he was still at home, but about to head to the hospital in obvious serious condition...she had phoned him and could tell right away by his voice that something was really wrong. Ginger's niece, who lived nearby, rushed over to check on him and found that his eyes were dilated, his tongue was to one side she knew she needed to get him to the hospital. On the phone with Ginger, she relayed his condition and said there wasn't even time for an ambulance, so her niece quickly put the phone to David's ear for Ginger to tell him that she loved him for the last time.

Later, they would discover that her husband's impact tear, even if it had been discovered immediately after the crash, would not have been operable and they would have been forced to tell him that he would die. So, it makes you contemplate the series of if angels were watching over him and buying him borrowed time so he could be with his wife during such trying times. Maybe it's best that he didn't know he was dying and that she didn't know he was dying...perhaps the few moments they had left together would have been filled with despair instead of hope. Maybe the not-knowing was actually a hard to understand gift.

Stunned, I continued to learn more about her incredible story. In the magazine article, it saddened me to read her words, "I had a new heart only to have it broken."

After her husband's death, in the same hospital that had given her life, she had arranged to have David's organs donated. And as she was recovering from her own heart transplant, her husband's heart was transplanted into a father of three children, in the same hospital.

The ironies in this story are incredible. Her healthy husband died unexpectedly as she lay in the hospital after knowing that her only dying chance was a high-risk heart transplant. Her husband was consumed with being by her side through the worst, as he was dying himself.

Ginger Zimmerman is now a speaker with the American Heart Association. In an interview, she said something that women especially need to know, something simple, yet powerful, she said, "You live with your body every day, you know if it's not working right." So do not doubt yourself. If you KNOW something is wrong, then be blunt and tell the next doctor that you need for them to not brush you off or to blame their lack of knowledge on something mundane...they need to find out what is wrong. They need to put on their medical detective hat and get to work, even if that means employing the process of elimination.

Anyway, Ginger's personal story has touched my own heart. Her battles must have been seemingly insurmountable. The children's pain of suddenly losing their pillar of strength, their father, and then having a mother with such serious medical problems must have been devastating for them. This family has been through an amazing ordeal and I am encouraged by Ginger's determination to live as healthy and as fully as she can, in spite of ongoing challenges. I feel blessed to know her story.


A Primitive Homestead said...

This true life story is tear jerking. I am sorry to hear you have addison disease. Two years ago I started having some problems with the kidney's. I was treated for infections & another far fetched doctors belief. During this time my Pap had kidney failure & died. He had been in pain for along time. Not really believed by doctors. Excuse he was just old. Months later I was told I had another infection. Never really recovering from the months before. I ended up in the ER in another town. Left know I had kidney stones & kidney's were not working to rid the waste fast enough. Surgery & complications after. Regular testing of urine & kidney x- rays. Daily meds. I guess you could say life is fun. Take what I have & make the best of it & never give up. As you said doctors can not get past somethings. Prayer lifted for you. Blessings!

LindaG said...

I don't know if you have ever found any type of portable chair that is comfortable for you.
Hubby has often had problems in theaters, for example. For Father's Day, middle son bought him one of those quad-folding chairs, but an extra wide one. It is very comfortable and hubby uses it for picnics and going to the movies.
Perhaps something like that would help you when you feel like attending things.

Still. *hugs* I am hopeful when you are growing or gathering your own food, and living away from it all, that you will start to feel at least a little better. ♥

Patrice said...

What a tearful story! You are going through so much. Health challenges are the worst. I've heard it said that having your health is the most important thing. Next to having the Savior, it is. In our youth, we take health for granted. I know I certainly did. Keep rising above your circumstances. You sound like a strong lady!

I'm your newest follower. Have a great week!
Everyday Ruralty

Charade said...

Like can be so fleeting, and a positive attitude sure beats any other kind. Thanks for sharing yours with us.

Karen said...

Oh, I don't know what to say. (And you know me well enough to know that doesn't happen very often.) What a sad story, so much unbelievable heartache to have to deal with.

I am having some weird issues with my health for the last year, stuff they write off as hypothyroidism troubles. I'm not certain about that at all and keep trying to find a doctor who will at least listen. The search so far has not been fruitful and our insurance is almost non-existent, so I just keep plodding on and hope.

You are such an inspiration to me.

Vickie said...

Lana, thank you for sharing this story about Ginger. Makes my little troubles sound so weak and pathetic...

You are inspiring to me to know that you live with this disease and are trying to make the best of your situation. You must be a very strong person! I'm proud to have met you. I believe that your farm and your activities there will help you. I firmly believe that my activities on our little farm 3 1/2 years ago helped me to get over a devastating depression that I'd been suffering from for 6-7 months. I couldn't even get out of bed. But I'm not going into that here. Not focusing on self and looking outward and getting back into life and other people and activities sure helps alot. But you already know that. Keep up the great work - and know that you are being lifted up to the Father.

Lana from Farm Life Lessons said...

Lara --- my heart goes out to you. When it rains, it pours! Having difficult and painful things come one after the other can make you feel worn down and puttered-out, and I definitely have those days when I feel as if the world is piled high on me, but after allowing myself to throw a little pity party, for a set amount of time, usually after everyone has gone to sleep and I can suffer alone, then I gather up my strength, try to get extra sleep (for me that means more than 6 hours) and I make myself have an attitude adjustment. I begin to remind myself of everything that I have in life and the miracles I've's hard to not pick myself up and keep facing the hard truths after I remember everything I have on my side. It's not easy, sounds as if you have much experience in this area as well! Keep going!!!

Linda --- I have just learned to deal with my agony. My spine collapsed a couple of years ago, my cervical spine, and it had to be totally reconstructed with the surgeon going through both the front of my neck and the back of my neck to rebuild the vertebra from cadaver bone, then to double plate, screw and bolt it together. All my hardware must be left inside because my neck was so unstable. The bad part is that the rest of my spine is basically crumbling and the part that has been rebuilt is again pushing into the spinal cord. Sometimes, I want to throw my hands in the air and say, "I give up," but then I realize that I am so very far from giving up ---- no matter what the reports say, I live a wonderful, full life. One doctor told me, "You have seen the reports from your MRI's and know exactly what is going on, but there are people walking around out there who have much worse that would show up on scans and they have no idea." I try to remember that just because I do KNOW what is wrong, for the most part, I am still ME. Most of us have some kind of battle. Our back, knees, hips, ankles, shoulders...on and on. I've just been unfortunate enough to literally fall apart, but fortunate enough to not be paralyzed from the neck down...or worse. So, I am thankful. There is so much that could have gone wrong, but I have been given so many second chances, it's hard to complain. And, I do think you are right, the more I get to be in the country, the more distractions I have from my aches and pains. I love being outside and our land is so is beautiful.

Patrice --- you are right. I was 33 and on top of the world when I suddenly developed a catastrophic illness. I never imagined things would turn out as they did. Then again, I love the person I am today and the direction I'm headed in...the growth I've been given a chance to experience, all because of my health challenges. Sometimes, you might lose your health, but you gain much more in the journey. I always say that my situation gave me a new set of eyes...they are pretty awesome.

Vickie --- no one has troubles that are weak and pathetic. Each person has their own suffering in life and you sound as if you have been through the wringer. Being able to talk about it and to see how far you've come is such a beautiful healing experience. I'm sure that being on your land in your farm house has been something that you were able to cling to and to help you move forward. I'm sure you understand that some days have baby steps, some days we go backwards a bit and other days we take giant leaps forward...we never know, so that's why we've got to keep going. Even the days when we must go backwards, those days just make us appreciate the others so much more. Each has their purpose.

Everyone ---- Personally, I feel sorry for the person who never has trouble...woe to them when it comes. It sounds as if we're all pros and able to take whatever comes our way!

Lana from Farm Life Lessons said...

Charade --- it's a good day. I get the bad ones and turn into a bear, but I do my best to stay positive. The alternative would certainly not be much help to me or to anyone around me. Besides, I always want to give a grumpy person a swift kick in the rear...I mean...I'd love to give them a big smile and a finger-only hug. :-) haha

Karen --- you have every right to bring in a list of your symptoms and to ask that the list be put into your record and be made a permanent part of your record. You might have to do some major homework yourself. Since insurance is such an issue, you'll really have to do your own research with looking at your labs, etc. for clues so you'll know which direction is the best to go next. Maybe an entire new direction is needed. I've discovered that each test is so freakin is very difficult to pinpoint things unless you have a thinking doctor. Unfortunately, those are hard to come by these days. But, don't give up. Do your research and go in with a checklist to go over with your doctor --- get him to use that brain.