The book……..far more important than the cover

My life is an open book. There really are no secrets around here. One would think that would make life easier on most accounts. Never having to hide who you are. Never having to do certain things behind closed doors. It is far different than the way I used to be. I used to be a closed book so to speak. No one really knew who I was.

When you are an open book though, it leaves you open to a constant flood of ridicule, misunderstanding, and hurt. You never see it coming either. It just pops up and slams into you. Whats worse, the hurt usually comes from those you would least expect. But on the flip side of that, there are others standing there to heal the wounds, and they are usually the ones you least expect as well.

I had one of them days yesterday. A hurt (from someone I never would have expected) and the heal (also from one I never would have expected). The hurt? Well thats not important. But the heal was. I spent hours talking with a dear friend about the hurt. Through the tears, then the laughter, I realized that right there was far more important. The hurt was just something to bring me closer to a friend. The healing is what mattered. And I learned a hard lesson. Life brings you things you will never expect. The good the bad and the ugly. Its all there to teach us, shape us, mold us, and help us to become better in the end.

I did realize something else. The hurt? It usually comes from someone who has no real clue who you are. It might be some one you only see at church, they do not know what the day to day in your life is like, nor do you know much about them. It could be the lady down the street. You know each other since you live on the same street, but you wouldn’t call your selves friends. Your more true to the term acquainted. Could be the lady you see every day somewhere like the post office. You have known each other for years, yet truly you don’t really know much about each other. There are the online friends whom you have never actually met. They only see the online version of yourself, as well as that is all you see of them.These are the ones who will doll out hurt far quicker then anyone else. The people we know, but don’t actually know.

That confuses me. Why are we (all of us myself included) so quick to judge ones we do not really know? We make assumptions on the way that person is based on the small bits of information we have. We judge the book by its cover so to speak. If you do not really know me, does that make it easier to dole out a judgement or ridicule? It must. The one thing I have seen over and over, is the people who know me the least, are the first to speak up with judgement. And its usually not in private. They are unashamed of their feelings, and will shout them from the roof tops to anyone who will listen.

Its something we have all been guilty of. Whether you admit it or not, we all make judgements of others. We assume one thing, with out ever taking the time to know the reality.We read the book cover, not the book so to speak.  But making a judgement that you keep to yourself is far different than doling out a public ridicule. Both are wrong, but the ridicule usually hurts someone.

The healing I encountered yesterday? Well I learned many things through it. I do not have to be some one I am not. I can after all only be me. I do not have to change who I am to make some one else happy. I can seek help where ever I choose to do so. I can share my words, thoughts, ups, downs, and struggles, happiness, and joys with whomever I choose (and however I choose).  And you have the right to listen, silently judge, publicly ridicule, stay silent, send words of kindness, or anything else. The biggest lesson I learned slapped me in the face. I as well read book covers, not always the book. From now on, I read the book!

Today I am suddenly looking past the book covers. What are you suddenly looking for today?

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Missing ears……have you seen them?

I think I might be dying. I might be having a heart attack. Actually, I think the artery in my my neck is clogged. At least that’s how it feels this morning.

I called my husband at work to tell him this. He told me to calm down, that every thing was going to be fine. I told the the kids, and they told me not to panic, I probably slept wrong. I called the cardiologist, and they had no openings. I explained its hard to tell the difference between a panic attack and a heart attack. She asks my symptoms. I tell her chest pain and neck pain. She says I could be having either, but they still have no openings today. She says I can call my PCP provider and see if they can get me in, or I can go to the ER. I call the PCP, ER’s scare the crap outta me. They have no openings but can try to work me in this afternoon if I come sit there.

No one that I call seems to be home today. Actually they might just be ignoring my calls. That’s the thing with having panic disorder. Everyone gets sick of you whining. Its like you become the boy who called wolf. No one really knows if you are having “the big one” but it doesn’t really matter, because to them they have heard it before. To you though, each wave of panic is the big one. You can not differentiate panic from dying while in the throws of it.

For some reason I have to deal with panic, plus a heart condition. That makes life very scary for me, but no big deal for any one else. My heart has almost robbed me of my life once. I know for sure it can kill someone. I know that the heart is the one thing in my body that sustains life. Something may be wrong with it again. Every shoulder pain, every neck pain, and every chest pain are major issues to me. They could be signs that something is wrong with my heart again. Add to that the waves of unexplained dizziness, the passing out, and the tremors the right side of my body has, and I go from nervous to freaking out.

I still get the occasional platitudes from people. I have a few favorites “it’ll be fine”, “It’ll work out”, and “don’t worry” are among the top. With panic disorder, nothing is ever fine. And telling someone with panic not to worry? that one cracks me up! That would be like stabbing me and then telling me not to bleed! I promise, people who suffer from panic would love to just not worry. If we could. Over the last few days, I have heard some platitudes that take the cake so to speak.

“You know, you should not worry so much. Enjoy the time you have left.” The time I have left? Am I dying from some unknown illness that will in the matter of weeks, leave me on my deathbed? Enjoy the time? Dude I cant stand up with out passing out, how am I supposed to enjoy that? No matter how you slice it, panic or not, passing out is not something one enjoys. Its rather scary.

“You are lucky. If the end of the world happens on Dec 21st, you might not have to deal with it.” Ummmmm…..thanks? how do you even respond to that statement? First, don’t tie your end of times fears in with my illness. Second, if the end times are near is that supposed to make my health issues less scary to me? Third, my Bible doesn’t say the world will end on Dec. 21st 2012. Till it does, don’t preach dates to me. Fourth, never mind……I could just go on and on and on about this one.

“You have so much to be thankful for, why bother with worry?” I do have much I am thankful for. Doesn’t stop the worry from creeping it. Worry doesn’t care what you have.

“Its all in your head. It’s like mind over matter. You think you have it so you do”. Yea buddy. Cuz I enjoy living in this constant hell. I do it for all the attention. How one manifests physical symptoms is beyond me. Some stuff one can fake. A headache when you just aren’t in the mood? Yep that can be faked. An upset stomach on a day that is far to nice to spend in work. Yep that as well can be faked. Passing out? I think that would be hard to be “in my head”. After all, you cant fake the actual act of passing out. I wake my husband from a sound sleep at least once a week, shaking in the bed so violently that it jerks him awake. I must be good. I can manifest my symptoms in my sleep! Maybe I could push through and think myself well, at least when I am awake. Doubtful though. If it was that easy, no one in the world would be sick. We would all put mind over matter if we could.

The one I heard yesterday has got to come out on top though. “It could possibly be a spiritual issue”. God is mad so he made me sick? I skipped a day of reading my Bible so I must be punished? I haven’t prayed hard enough to be healed, so I wont be? I am a christian. Saved by Christ, sins and all. Do I miss days of reading the Bible? Yep. so do many pastors, missionaries, and devout Christians.  Are they being slammed with medical issues as well? Is my prayer life all that it should be? Nope. Its never enough. But God knows my heart. And there lies the truth. I am not afraid of Him seeing what is really there. I suspect many would be afraid of that. So everyone who doesn’t pray perfectly gets sick? I cant believe that. I do believe God knows exactly what is wrong with me. I believe he knows exactly how this will turn out. I do not believe he did this to me for “spiritual” issues.

I love being loved. I love when people offer advice. And crazy as some of them are I love the platitudes. I do not usually understand most of them, but I do appreciate them. They show that you at least thought of me today. You thought of my situation. I may not agree with it, but it shows you put some thought into it and reached out to me. I reached out to some one yesterday, and come to find out, they appreciated it to. They aren’t sick. They don’t have panic. Just a happy healthy normal girl. But she was on my heart and mind. I told her just that. Come to find out, she was going through a silent struggle. And she poured it all out. I didn’t have answers, but I have ears. Seems ears was just what she needed.

Ears, are very important to some one like me as well. I don’t need the constant reassurance that things will be fine (I wont believe it any ways). I don’t need a lot of things. What I do need is some one to listen. Some one to care, and sometimes, just the actual interaction of others. No one drops by anymore. ( Could it be because I physically cant clean up the house, or that watching me pass out and flail around on the floor is to scary?) The phone rings less and less these days. (Is it that every one is sick of hearing about it?) The flood of text messages that were daily keeping me encouraged when I first got sick three months ago have stopped. (Is it tiring, boring, or just to much to do it daily?)

And so it is. The world has become scarier then it once was. The world doesn’t care that I am suffering from the unknown. The world must continue, whether I am sick or not. The world is a scary place for one suffering from anything. One sees how truly vast, scary, and lonely the world can be when they are suffering.

It is exhausting living with panic. Its hard on the family when one suffers from panic. Its hard on your friends to deal with your fits of worry that to them, are not real worries. I am learning though that even with all the worry, I have a voice. Could I help some one else? Could I shed some light on what it is like to live with the constant state of worry? I hope and pray I can touch one person. Let someone see that as much as they think so they are not alone. Someone else in the world actually feels like they do.

Today I am suddenly looking for a little understanding. A little compassion. And yes, even ears. What did you find yourself suddenly looking for today?

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When life is scary….it is not fine

“Don’t worry”. “The doctors  will figure it out.” “Get over it.”

I have heard all three of those statements and then some over the last few months. Actually There is at least one person a day to tell me something along those lines. But the one I love to hate the most, I heard today. “you’ll be fine.”

Over the last three months I have been to the ER six times. I have seen my family doctor about eight times. The ENT doctor three times. And a total of four visits to two different neurologists. I am currently awaiting to visit the cardiologist for more tests with them. All is not fine, something is wrong.

The problem when you are fighting an unknown illness is that no one sees it. To the world you appear to look normal, you look fine actually. But inside, you know something is wrong. You feel your body revolting on you, and yet to the world you look fine.

I battle panic disorder. That leaves me not only battling the unknown illness wracking havoc on my body, I must also battle the fear that comes from having panic disorder. It’s a vicious cycle. But to you everything is fine.

Today’s blog we are going to walk through everything I have encountered today (which is a typical day with panic and depression). Am I fine? To you, probably. To me, all is not fine.

The alarm goes off at seven. It is far to early to be up. Weekends are supposed to be for sleeping and relaxing but, church starts at nine. We must get moving. Steve rolls over and wraps an arm around me. Yes! Just a few minuets like this. Life is a lot less scary when he holds me. But it never lasts. The dogs notice we are awake, and must receive all of his attention. They haven’t had time with him all night after all. Actually, they are more interested in going outside at the moment, but will settle for his attention. So up Steve gets, and in his place comes the first fearful thought of the day.

I need to increase one of my medicines. To be honest its the antidepressant. I am supposed to double it. I was actually supposed to do that Friday, but was to afraid to. I forgot to do it Saturday, well again I was to afraid, but I tell myself I forgot. I can take two right? The doctor wouldn’t prescribe more if it wasn’t safe right? Wait….what if it makes me sleepy? See before I even crawled from the bed to the bathroom, the panic had set in.

Pill bottle shakily in hand I decide, its just not safe to double the dose. So I take one and a half instead of two. Then panic because I took one and a half. What if my body cant handle the extra medicine? What if it makes me to sleepy? Wait, there is Steve. He will notice if something is wrong. I tell him I chickened out, and didn’t have the balls to double the dose. but I did take an extra half. In his arms again enveloped in a hug, I know he sees just the extra half is a big accomplishment for me. Medicine is one thing that will set the panic off quicker than anything else.

Coffee in hand I hop on the computer for a few, and then out the door we go to church. I feel funny. Kind of dizzy, but more light headed than dizzy. My body is sore. Aches actually from lack of use, and all I have tried to do this weekend I assume. My shoulder and chest have their ever present hurt hanging on as well. And as we step out of the car at the church I throw a few PVC’s(normal for me, I have them occasionally but they are scary as crap) and a wave of dizziness overtakes my body.

We make it inside, hand in hand, Steve and I. We are stopped pretty quickly by a dear church member who asks how I am doing. I tell her, honestly. I know she sees my fear. She recommends another trip to the Mayo Clinic in Florida allowing them to do a full medical work up on me. Awwww! What a dream come true that would be! But honestly, I do not think my body would handle that trip. I fear I would die en-route.

After greeting a few other members (with the best fake smile I can muster since I am so dizzy) we head to our seats. Thank goodness, I cant stand up much longer. It  feels like I have walked miles and miles as opposed to the few hundred feet it actually was.

Worship starts. This is my favorite part. I close my eyes. The music washes over me. I am a music person. I think that’s why I adore that part of service so much. Woooooh…..open eyes, I am far o dizzy with them closed, and realize I am swaying (and its from the dizziness not the music). I hope no one notices. The members of my church have been through a very recent medical scare. (A visiting pastor received CPR after his heart stopped. A side note: he is well and recovering at home.) The members do not need to see me drop, especially after they witnessed that.

I tell Steve I need out. Like now. He tells me to sit. I cant. That will alert those around me something is wrong. Ut oh…..I am gonna drop, I feel it. I tell Steve let me out of the pew. I head out to the hall. He is right behind me thank God. We no sooner hit the hall and out I went. He gets me “awake” and I am so confused. I hear a woman’s voice and am to embarrassed to look and see who it is. I cant believe this has happened in church of all places. Is there no where I can go to be safe?

It takes about five minuets to go the fifteen or so feet to the fellowship hall. I sit, and the tears come. Why has this happened again? Why am I sick? Why me? Why cant I even go and listen and learn God’s word? What else is this unknown illness gonna rob me of?

I tell Steve I need help getting to the rest room. Its weird. When I come to from these episodes its like my badder is going to burst. Ok not really. I am afraid if I go down and my bladder isn’t empty there will be a mess. I must accomplish this. We slowly get there, and I realize I must go in alone. We are in public. Can I make it that far as dizzy as I am? I must try. I get there. While washing my hands the shaking starts. We don’t know why that happens either. buts its just as scary as passing out. Panic. I have to get out of there and to Steve.

I make it. I collapse on him. Full blown tears. And am comforted by the arms of a lovely church member. She tells me she is praying they find an answer for me. I somehow take comfort in that. I know if God is gonna answer any ones prayers, hers will be at the top of the list. When she says she is praying, I know she is on her knees lifting my name to God.

I gotta go. I gotta sit. I feel like I am gonna drop again. We cant. Someone else has spotted us. I don’t know who she is. But she knows my name. She tells me to have my magnesium checked. She says things will work out. Magnesium? She says it can mimic a heart attack. Did my doctor check that? Did any one? What if I have that? Where do I go to get that checked? Should we go to the hospital?

Steve says no to the hospital when ever I ask anymore,. Says they will just send me home anyways. I don’t even ask this time, though at least if something bad happened and I was there, they are equipped to help. To the car we go. Back home we go. He places me on the couch, and out the door he goes to work on the car. I have taken some Tylenol for the body aches anyways. I doze a little. mostly I sit here worrying what could be wrong with me and how scared I am to be alone tomorrow when Steve and the kids return to work and school.

To you I look normal. On the inside, I feel anything but normal. I feel scared. I feel tired. I feel light headed and nauseated. I feel dizzy. I feel the every present lately pain in my chest and shoulder. My face is tingling and slightly numb. Like it was hit with Novocaine and its wearing off. My right arm is so sore I cant stand it. We think that pain is from all the shaking. My body literally feels like it weighs a thousand pounds. But to you I look fine.

Today finds me suddenly looking for understanding. What did you find yourself suddenly looking for today? I pray its that this blog if nothing else, allows you to see, people are more then how they look on the outside. I hope you are suddenly looking on the inside. Do you see the struggles of your friends, family, and coworkers? Can you offer words of comfort? If so, offer them. Because to someone who looks fine, usually does not mean they are fine.

 

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Someone that I used to know

Someone that I used to know.

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Someone that I used to know

“Welcome back” Those were the first words I remember after waking from a medically induced coma in May of 2007. Its funny. Those words were repeated to me time and time again. When I was released from the hospital and came home, every one said “welcome back”. Entering church for the first time after coming home every one said “welcome back”. Every place I went that I went before I got sick, I was told “welcome back”.

Welcome back? I hadn’t gone anywhere. Well I spent a few weeks in the hospital, but I didn’t remember them, so to me, I was home one day, home the next. In my brain I had not gone any where. It felt weird. Hearing that. So the quest started. The quest was to figure out what had happened to me.

My family told the story best. After all, they were there the whole time. It was a scary story, but it at least seemed to have a happy ending. Their wife/mother/daughter/niece/sister/aunt was alive against all odds. Friends had a story about it to. Theirs was just as scary but had the same happy ending. The doctors? Well their story was the scariest. They had a happy ending attached as well, but their ending was different. All they could say was they had no idea why I was alive. I was the “miracle” of their careers. At least my family and friends attributed my being alive to the right person. They said God saved me.

So the happy ending starts. You do things you would never have done prior to almost dying. You tell every one how much you love them. You tell them this ALL the time. You always say goodbye when someone leaves. You remember to stop and smell the roses. You see the little things in life. Being a neat freak is no longer important. You become a devoted christian. Your once rocky marriage? No longer. It becomes the strongest bond between two people you have ever seen. You tell every one who will listen, all that God has done for you.

Ahhhhh. Aren’t happy endings grand? Yep. They are, for everyone on the outside looking in. Something happened in those weeks I was in that coma. I am now someone that I used to know. I am so far removed from the woman I used to be, that everything has changed. New friends, new attitudes, new out looks, new faith, and new fears.

Along the way,all that I once took comfort in has changed. Old friends could not understand the person I was. I cared for my family more. They came before my friends. Church was more important. That came before my friends. Those friends who were so used to being first, no longer understood. A lot of them turned their backs. Some have become just Facebook friends, others I no longer even speak to.Others down right took resentment to the woman I now was, and went as far as telling me they hated all I had become. All the friends who knew all my dirty secrets, gone in a flash. So it was a happy ending on the out side. One piece crumbling on the inside.

I was once a fearless woman. Nothing scared me. I was the daredevil of the family. I had the “I will do what I want, when I want, and how I want, to hell with the consequences” attitude. If you were in my way, I did not step around you. I moved you out of the way. Over the last five years fear has consumed me. I am afraid of medicine. Yep medicine. To the extreme of fearing taking two tylenol at the same time. (and I was the girl addicted to Tylenol PM’s prior to all this. Addicted to the extent that a bottle of twenty four pills lasted two days at the most.) I am afraid to have a drink with friends. Afraid to have even a sip, for fear that if its in my system it may mix with my meds and kill me. This from the girl who five years ago, the highlight of my weekends was the numbing drunkness I knew was coming each and every Friday night. Drunk to the point of not remembering any Friday night from the time I turned 18, until five years ago. Drunk to the extent that I don’t remember most of my wedding. Now a mere sip of the stuff racks me in trembling fear. I am afraid of dying. I think every symptom I have from a head ache to a sneeze, to a cold, to a broken bone is going to kill me. The fearless woman? She is just some one I used to know. Its a happy ending though. On the outside at least. More crumbling on the inside.

It’s funny. No one used to judge me and I was a bad person. I mean real bad. I had no problems lying or cheating to get ahead. I could lie to you about anything. I was good at it. I could “fake it till you make it” with the best of them. Faking it was normal for me. Bad as I was I was happy. The second you become a christian though, you do see your deceitful ways. You see the way you used to hurt people. You take steps to become a better person. You work on it daily. You find new people to surround yourself with. All is good, until you trip. All the new people point fingers. They make sure you and everyone else knows you tripped up. You try to fix it, you try to put it behind you, but no one seems to forget when you get tripped.On one hand that’s good. It keeps you accountable for your actions. Something we can all use. On the other hand, it down right hurts.  Ahhhhh. Happy endings are grand. On the out side. More crumbling happening on the inside.

Something happens to your family when one person in it almost dies. Those nightly family dinners that were important? Far more important now. Family time (especially with five hectic schedules) is so important, even if it is only five minuets a day. We all cherish the laughter and tears we shed together. We are as close as a family can be. We have no secrets among us. None. We share literally everything. But something else happened along the way as well. Mom who is now consumed with fear, is scared for her kids as well. I need to know what they are doing at literally every second. I want to be with them when ever they are away from home. If I could sit and watch them at school I would. My oldest? I keep threatening I am gonna go to college with her. I am so afraid to let her go. My husband? I went from never caring if he was home or not, to not being able to make it through his work day with out talking to him. My brain understands he is at work. My fears? Well they do not care that he has a job. The great happy ending. More crumbling on the inside.

My happy ending has left me being someone that I used to know. I am beyond thankful to be alive. I give all credit where the credit is due, I am alive because God saved me. He saved me for a reason. I love sharing the story of all God has done for me over the last five years. If something in my life story brings someone closer to God, I am happy. I love that my medical records are studied by medical students. If my case helps them save some one else’s life, I am happy. I love that my children see that I can not live with out Steve. In today’s times, them seeing a strong marriage is important.That makes me happy. I have a few dear friends that get me. The me I am today, not the woman I used to be. We laugh, cry, and share our deepest darkest secrets. That makes me happy.

I have so much to be thankful for. Much to be happy about. Yet I am not always happy that the old me is someone that I used to know. I want some of her back. I want to be fearless again. I don’t want to care what people think of me. I want that total uncaring, loud, laughing, fearless lady to show her face some days.

My happy ending? It is happy. Even with all the crumbling that happens on the inside. It’s happy because I have my family, my friends, and God. But today, I am suddenly looking for someone I used to know. Or at least a part of her. What are you suddenly looking for today?

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Suddenly Looking

Suddenly looking. You’ve been there. It might be something small (where did those car keys go?) or something big (what health issue do I have now?) but we can all relate. At one time or another we are suddenly looking for what it is we need. This will be my (what seems never ending at times) journey of all I am looking for.

Where will we end up? Who knows! But, along the way I will share the laughs, tears, and everything else that goes along with being someone who, about daily, is suddenly looking for something.

I do know where we will start. With the most current search. I am currently searching for answers to what seems to be a never ending always changing set of neurological symptoms. Over the last three months I have had just about every neurological symptom you can imagine from vertigo to seizure activity, from passing out, to headaches, and everything in between.

Here is what we know for sure. I do not have a brain tumor. Thank you God for that. I can not imagine having to battle something that scary. I do not have Menier’s Disease. I do not have vertigo (while it is a symptom of what is going on, it is not what I have). I am not having classic seizures with a cause (like epilepsy) actually the last neurologist I saw felt confident she could totally rule out seizures of any kind (though if this shaking thing is not seizures, I would love to know what it is). I do not have Lyme disease or spotted mountain fever.

While the last three months have been very hard on me and the family, I have learned a lot as well. Some valuable lessons actually. The whole “be still and know I am Lord” verse, well when you have no choice but to be still (and I mean a very literal still laying flat out not moving because the symptoms are so bad) you can literally feel God around you. After all, who better to comfort you? I have also grown deeper and stronger as as a christian woman. While the panic still wants to take over, I find myself relying on God now more then I ever have before. Yes I still get nervous. Yep panic attacks happen to, but I am learning the closer I am to God, the easier the nerves and panic become. You learn who your true friends are when you are sick for weeks on end. They are the ones who never tire of hearing what symptoms you had today (no matter what they have going on themselves). They are the ones whose lives may be in a tail spin yet at least once a day you see a text message from them asking “how are you today?”

What am I suddenly looking for today? Just to make it through today without scaring myself to death. We have an appointment on Thursday in Winston Salem. I am currently researching all sorts of “possible” things that could be wrong with me. I will be armed and dangerous walking in asking “could I have _______ or could it be ______” but I will also be informed knowing its not ______.  I will gladly take anyone up on the offer of helping with research. After all I am not very good at it. If you are reading this blog, you know how to get in touch with me. I can send you a list of symptoms to look up.

Until next time….fill me in on what you are currently “suddenly looking” for.

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