this is the question I get constantly.
It's the only thing people can come up with sometimes. Or all the time.
At FMEA Convention last week it was all I ever heard when someone came up to me. I guess that can be expected at a band director's convention. I mean everyone is talking about their job. But honestly it's sometimes the only thing people know how to discuss with me comfortably.
I thought I was going to LOSE MY MIND if one more person asked me. I guess I thought there might be more things to discuss?? But then I thought about it and all that's on anyone's mind when they see me is John. John's death and my life. I want to answer the questions that they are afraid to ask.
"How does it feel ?"--- horrible. it feels unreal. it feels like my life ended and i have to rebuild it from nothing.
"Are you ok?"-- I'm better. I am up and down. I have good days. I have bad days. And I have MISERABLE days. But, I am progressing. I have come far since April.
"How long are you going to wear your ring?"--- until another person comes along that deserves for me to take it off. and even then maybe not.
"Do you still talk to his family?" --- Yes. We are extremely close still. And we always will be. They are MY family too.
"Do you think you will date again?"--- I actually have kind of started this process. Well, in a weird way. I am not OFFICIALLY dating anyone. I am seeing people here and there but I am in no way close to having a relationship. I am still healing. If someone amazing comes along... then we will see.
"What happened to him?"--- he died from a rare virus called myocarditis. It was sudden and unexpected. Yes, I found him. Yes, it has traumatized me. But I truly believe John left this world as peaceful as one could leave it. And the happiest.
"Are you seeing a counselor?"--- Well. no. I was. And then I wasn't. I will be seeing one starting next week. It's hard finding a good counselor. One that understands you and that you have a strong relationship with. It's just as tough as dating.
"Were the holidays hard?"--- Yes, they were painful. The anticipation of them was even more painful because I knew what was coming. Except New Years. That was awful and I thought it would be easier than it was. I have to overcome a lot of "firsts" without John and each one of them is a hurdle.
"Can I do something?" --- Yes. First, you can pray. Second, you can call me, text me, write me... and most important... get your ass over here and visit! I appreciate the company. We don't have to do anything fancy. Just sit with me, talk with me and make me less lonely.
"How do you do it?"--- Losing John wasn't a choice. No one would ever ask for this type of pain and grief. I carry this burden daily without any previous knowledge of how to handle it. It's new to me. It's not easy. Being a widow does NOT come with a handbook and so I am going to make mistakes. Please be patient. I "do it" because I have to. Because I refuse to sit around and wait to die. Because I choose to live. For John and for myself.
So, if I missed some questions please leave them for me and I will answer them for you. I will answer honestly and to the best of my ability. Do not be afraid to ask me about my life. Because as much as I hate it, this is part of my life. And will be forever.
And to answer the question "how's your job?"
It's great! I love my job and I love my kids. I love my associate, Nicole and I love my school. I think God put this opportunity in my life for a reason and I grateful for it. It has literally saved me.
Showing posts with label myocarditis. Show all posts
Showing posts with label myocarditis. Show all posts
Wednesday, January 19, 2011
Sunday, September 12, 2010
Doctor's Visits
Today I woke up and went to the doctor. To get a flu shot and have my throat checked out because swallowing lately has been a struggle. My neck and ears are throbbing. I get flu shots every year. Because I teach. So this is nothing new... but I have to admit that a sense of anxiety overwhelms me when I go to the doctor now. I go into the room and start to tell my symptoms... and next thing you know I am going on and on about how I lost John. And I end up crying. The nurse feels so helpless at this point. She assumed this was an easy stick to the arm and antibiotic prescription. Now here I am crying. Every symptom that comes up is now a flag. When I don't feel good I can't just ignore it. I have to make sure I am going to be ok. It's obnoxious really. Doctor visits will never be the same again. Not like they were ever easy before. After John died and I went to the hospital..Philip, Courtney and John's dad were there to support me while I got all my tests done. When I had to get blood drawn for my physical.. Jen was there to sing songs to me while they stuck me with needles. I wasn't alone then. And I know it sounds pety. But, it's what I needed.
Before all this... I had John. I remember when he went with me to my gynocologist for each of my 3 vaccine shots for cervical cancer. Ya know, the ones that were free to get if you were under 26. But they hurt so much!! Especially the first one. My arm welted for days after. John was in the room with me and held my hand and spoke to me. I am such a baby. I remember the doctor telling me why I should get it. I told her "well, should I get it even if I have only one partner?" She responded "well, just in case." I remember how offended I was in a way. There was only ever going to be John, lady. You don't understand. He's the one. forever. There will be no other. Now it was like... some revelation.
John was my first in last in my eyes. Nothing would change that. Our love was the real deal. What could separate that?
The answer was death.
One of could die.
But that never approached my thoughts. It wasn't a possibility. How naive. How naive for any of us to think that we are so unbreakable. That we can escape the power of death and God's hand.
But John was there.
Two years ago I was in John's blazer. I was in and out. I could hardly hold my head up.
I had gone to school that morning not feeling so good. By 2nd period I had fallen over in my office. I called the front office and said I needed to go to a clinic at my lunch and I would be back by the end of it. As I went to the parking lot to start my car I couldn't get the energy to move. I sat in the car for 10 minutes diliberating what to do. But I finallyu drove to a clinic. I got in there and laid on a chair... they wanted me to fill out paperwork and I could barely do it. I was miserable. They checked my temperature and pulse... pulse was a little high... temp was 99. Nothing serious at the time. They let me lay in the clinic while I called my nieghbor to come pick me up. I couldn't drive. It wasn't an option. I could barely move. She picked me up and called John to come home and take care of me. By the time John got home my body was burning up. I started to come up with self diagnosis... I thought I might have TSS. Toxic Shock Syndrome.
It made John terribly nervous so he put me in the blazer and we made our way to the ER. I was immediately admitted because my pulse was in the upper 100s and my body temp was 103. That is a RED FLAG in the med world. They hooked me up to an EKG and noticed my heart was a little all over the place. My nurse's name was Angel. I remember her well. I was so scared. They wouldn't let me go to sleep. John had to keep me from dozing off. He was so nervous... you could see it in his eyes. After the EKGs they put me in a wonderful gown and started testing me for EVERYTHING.
I remember John saying how cute I looked in the gown and he begged to take a picture. I said no.
After the EKGS, urine tests, blood tests, xrays, etc. the doctors couldn't really come up with a conclusion except that I had a virus. A form of the flu they thought. They hooked me up to an IV and gave me about 4 bags of fluid. They gave me pain meds and even valium. Their goal was to get my heart rate down. Below 100. John stayed with me the whole 8 hours I was there. In the end he got antsy. I would sit and stare at the monitor and watch my pulse. I concentrated on trying to make it slow down. It stayed at 116-113 for a long time. He got frustrated and made me turn away from the monitor and try and sleep. He shut the lights off. He sat in a chair and was quiet in the dark with me. I couldn't sleep. No matter how hard I tried. Finally, they let us go when my heart rate was 110. We couldn't stand to wait any longer.
I left the hospital with no answers. Just maybes. Maybe I had a form of the flu. They can only test a small amount. There are hundreds of versions. So, it was a virus.
And it was a virus that took John. A virus. And his symptoms were not even close to as severe as the ones I had. At least he never led on to it. Why couldn't I have taken him to the doctor? Would they have found out? What would they have been able to do? Could they have saved him? These are questions I can't dwell on. They will never be answered.
All I know is that the experience has forever changed me in so many ways.
And when it comes to my health and the health of my loved ones. I will always be super cautious... borderline paranoid.
No one likes feeling bad alone.
We want to be comforted. We want to be looked after.
I hate that John was alone in that room his last moments of life.
I would have held his hand as he took his final breaths... I would have whispered in his ear that I loved him and I would alwaya love him. I feel like that I owed him that. He had always been there for me for even the silliest things. For silly shots... or doctor visits... he was there.
I couldn't be there for him when he left this Earth and grabbed the hand of God. I know that when I pass on from this earth I don't want to be alone. I can't imagine it. I still have intense fear of even thinking about it. I still hate sleeping alone. Because John was alone. i need to have someone around me. to make me feel ok. to be with me.
to say I look cute in the hospital gown.
of course he would say that. John loved me at my best and my worst. He was absolutely adorable and adored me. i got to experience someone to totally loved me for me. for every part of me.
ok, it's theraflu time and bed with lily.
she's no John... but she sure is a wonderful addition to my life. I think John might have sent her to me.
Before all this... I had John. I remember when he went with me to my gynocologist for each of my 3 vaccine shots for cervical cancer. Ya know, the ones that were free to get if you were under 26. But they hurt so much!! Especially the first one. My arm welted for days after. John was in the room with me and held my hand and spoke to me. I am such a baby. I remember the doctor telling me why I should get it. I told her "well, should I get it even if I have only one partner?" She responded "well, just in case." I remember how offended I was in a way. There was only ever going to be John, lady. You don't understand. He's the one. forever. There will be no other. Now it was like... some revelation.
John was my first in last in my eyes. Nothing would change that. Our love was the real deal. What could separate that?
The answer was death.
One of could die.
But that never approached my thoughts. It wasn't a possibility. How naive. How naive for any of us to think that we are so unbreakable. That we can escape the power of death and God's hand.
But John was there.
Two years ago I was in John's blazer. I was in and out. I could hardly hold my head up.
I had gone to school that morning not feeling so good. By 2nd period I had fallen over in my office. I called the front office and said I needed to go to a clinic at my lunch and I would be back by the end of it. As I went to the parking lot to start my car I couldn't get the energy to move. I sat in the car for 10 minutes diliberating what to do. But I finallyu drove to a clinic. I got in there and laid on a chair... they wanted me to fill out paperwork and I could barely do it. I was miserable. They checked my temperature and pulse... pulse was a little high... temp was 99. Nothing serious at the time. They let me lay in the clinic while I called my nieghbor to come pick me up. I couldn't drive. It wasn't an option. I could barely move. She picked me up and called John to come home and take care of me. By the time John got home my body was burning up. I started to come up with self diagnosis... I thought I might have TSS. Toxic Shock Syndrome.
It made John terribly nervous so he put me in the blazer and we made our way to the ER. I was immediately admitted because my pulse was in the upper 100s and my body temp was 103. That is a RED FLAG in the med world. They hooked me up to an EKG and noticed my heart was a little all over the place. My nurse's name was Angel. I remember her well. I was so scared. They wouldn't let me go to sleep. John had to keep me from dozing off. He was so nervous... you could see it in his eyes. After the EKGs they put me in a wonderful gown and started testing me for EVERYTHING.
I remember John saying how cute I looked in the gown and he begged to take a picture. I said no.
After the EKGS, urine tests, blood tests, xrays, etc. the doctors couldn't really come up with a conclusion except that I had a virus. A form of the flu they thought. They hooked me up to an IV and gave me about 4 bags of fluid. They gave me pain meds and even valium. Their goal was to get my heart rate down. Below 100. John stayed with me the whole 8 hours I was there. In the end he got antsy. I would sit and stare at the monitor and watch my pulse. I concentrated on trying to make it slow down. It stayed at 116-113 for a long time. He got frustrated and made me turn away from the monitor and try and sleep. He shut the lights off. He sat in a chair and was quiet in the dark with me. I couldn't sleep. No matter how hard I tried. Finally, they let us go when my heart rate was 110. We couldn't stand to wait any longer.
I left the hospital with no answers. Just maybes. Maybe I had a form of the flu. They can only test a small amount. There are hundreds of versions. So, it was a virus.
And it was a virus that took John. A virus. And his symptoms were not even close to as severe as the ones I had. At least he never led on to it. Why couldn't I have taken him to the doctor? Would they have found out? What would they have been able to do? Could they have saved him? These are questions I can't dwell on. They will never be answered.
All I know is that the experience has forever changed me in so many ways.
And when it comes to my health and the health of my loved ones. I will always be super cautious... borderline paranoid.
No one likes feeling bad alone.
We want to be comforted. We want to be looked after.
I hate that John was alone in that room his last moments of life.
I would have held his hand as he took his final breaths... I would have whispered in his ear that I loved him and I would alwaya love him. I feel like that I owed him that. He had always been there for me for even the silliest things. For silly shots... or doctor visits... he was there.
I couldn't be there for him when he left this Earth and grabbed the hand of God. I know that when I pass on from this earth I don't want to be alone. I can't imagine it. I still have intense fear of even thinking about it. I still hate sleeping alone. Because John was alone. i need to have someone around me. to make me feel ok. to be with me.
to say I look cute in the hospital gown.
of course he would say that. John loved me at my best and my worst. He was absolutely adorable and adored me. i got to experience someone to totally loved me for me. for every part of me.
ok, it's theraflu time and bed with lily.
she's no John... but she sure is a wonderful addition to my life. I think John might have sent her to me.
Wednesday, June 23, 2010
john dreams. again.
Had another dream about John last night.
I guess I asked for it.
I mean... i was upset that I couldn't even remember a single dream. and now here i am. with dreams with a john that to me... is living... is breathing... is laughing and speaking to me.
we were at the house again.
I was aware that John had myocarditis and that he was going to die. that day.
I told him.
He didn't want to believe me. At first he refused to listen.
I finally convinced him. I was pulling on him and in desperation "John you need to go to the hospital... we don't have much time!!!"
John got in his car. It wasn't his cadillac in my dream. this was some sporty convertible.
i told John to constantly call me and let me know where he was and what was going on. When he called from the hospital he said they were making him wait 45 minutes. I yelled "No no! tell them we know you have myocarditis. you only have 15 minutes left!!"
that was the end of that dream.
then it went on to the next.
me with my friends from Chiefs on a trip to see the Taj Mahal. (sp?)
It was beautiful.
Dreams are so random.
With the John dreams I am always AWARE he is either dead or going to die. And I am trying to save him. This is me not wanting to let it be...
Because my mind i tricking me into thinking I could have done something.
But it's done.
My baby is no longer here.
He can't pick me up off the couch anymore when I fall asleep watching TV and carry me to bed.
He can' t bring up the laundry.
He can't take trips with me and squeeze my hand when the plane takes flight.
He can't stay up with me at night and talk ourselves to sleep.
He can't help me plan for our wedding. pick our colors. pick out cake flavors. pick out flowers... etc..
anyway.
back to dream land.
and i hope the man of my dream meets me there tonight.
it's a date.
I guess I asked for it.
I mean... i was upset that I couldn't even remember a single dream. and now here i am. with dreams with a john that to me... is living... is breathing... is laughing and speaking to me.
we were at the house again.
I was aware that John had myocarditis and that he was going to die. that day.
I told him.
He didn't want to believe me. At first he refused to listen.
I finally convinced him. I was pulling on him and in desperation "John you need to go to the hospital... we don't have much time!!!"
John got in his car. It wasn't his cadillac in my dream. this was some sporty convertible.
i told John to constantly call me and let me know where he was and what was going on. When he called from the hospital he said they were making him wait 45 minutes. I yelled "No no! tell them we know you have myocarditis. you only have 15 minutes left!!"
that was the end of that dream.
then it went on to the next.
me with my friends from Chiefs on a trip to see the Taj Mahal. (sp?)
It was beautiful.
Dreams are so random.
With the John dreams I am always AWARE he is either dead or going to die. And I am trying to save him. This is me not wanting to let it be...
Because my mind i tricking me into thinking I could have done something.
But it's done.
My baby is no longer here.
He can't pick me up off the couch anymore when I fall asleep watching TV and carry me to bed.
He can' t bring up the laundry.
He can't take trips with me and squeeze my hand when the plane takes flight.
He can't stay up with me at night and talk ourselves to sleep.
He can't help me plan for our wedding. pick our colors. pick out cake flavors. pick out flowers... etc..
anyway.
back to dream land.
and i hope the man of my dream meets me there tonight.
it's a date.
Monday, May 24, 2010
Myocarditis
After a month of sitting around waiting to find of what happened to the love of my life... we finally got an answer.
Let me tell you how frustrated I am with people's initial thoughts to the death of someone who is young. It has to be one of two things to them.
1) drug overdose
2) suicide.
and I guess at some point i might have had the same outlook? i mean if I watched the news and someone said they found a 25 year old dead in his home. i would assume that.
but when John's toxicology came back the day after he had NOTHING in his system. not even aspirin,
this was odd coming from the guy who would take 5 tylenol if he had a headache.
so, we just didn't know what to think.
what could it possibly be?
they had pointed to cardiac and left it at that.
after a month they found it to be a rare disease (actually viral infection) called myocarditis.
this is all i really know.
20% of sudden death in young adults is caused by myocaridits.
it's a virus that's attacks the inner part of the heart.
the symptoms are your normal "boy, i don't feel good..." symptoms. nothing fancy really. nothing shocking and out of the ordinary. you just dont feel good.
and that's how john was. he wasn't feeling good. but he was functioning fine. we went to bed. we watched tv the night before. we woke up and snuggled. it wasn't like he couldn't get out of bed or had any crazy fever. etc.
in fact, i read that myocarditis can only be actually detected through a heart biopsy.
some people get it and have no idea... and then they get better the next day... or, they have heart failure.
it is completely unfair. it's completely random.
it makes no sense. this whole thing doesn't. the virus doesn't either.
it's not hereditary.
it's not contagious.
it's just a freak of nature thing that someone tagged a fancy name on to.
it
and now that I know... do I really feel better?
absolutely not.
knowing doesn't bring john back.
i am glad i can explain it to people.
i am glad no one has to let their imagination run wild anymore
i am relieved it can't be passed on... to me or his family
but in the end i think about how through knowing all of this scientific research.. my soul still longs to understand the meaning of it all.
no fancy medical term can describe my own condition.
i am completely at a disarray. i am at a dead end here.
all i have is a fancy word.
but i am still clueless and empty.
this rare, undetected thing stole john. it snatched him away from me. and i am pissed.
there is no cause to join. no fundraiser for a myocarditis foundation. no myocarditis support group.
it's a term that so far... no one had heard of until this point. at least that I know of. i didn't know it existed... nor did I want to know. because before then i was living in my happy little bubble and NO ONE could burst it.
except for this.
except for the thing i dreaded the most.
when asked my worst fear i always replied "losing someone i love..."
what do you do when your worst fear becomes a reality?
that's like telling someone who is afraid of spiders that they will be surronded in a room with them for the rest of their life. no escape.
they have to deal with it.
i have no escape.
i have to deal with my worst fear daily.
so now that i know. now what?
Let me tell you how frustrated I am with people's initial thoughts to the death of someone who is young. It has to be one of two things to them.
1) drug overdose
2) suicide.
and I guess at some point i might have had the same outlook? i mean if I watched the news and someone said they found a 25 year old dead in his home. i would assume that.
but when John's toxicology came back the day after he had NOTHING in his system. not even aspirin,
this was odd coming from the guy who would take 5 tylenol if he had a headache.
so, we just didn't know what to think.
what could it possibly be?
they had pointed to cardiac and left it at that.
after a month they found it to be a rare disease (actually viral infection) called myocarditis.
this is all i really know.
20% of sudden death in young adults is caused by myocaridits.
it's a virus that's attacks the inner part of the heart.
the symptoms are your normal "boy, i don't feel good..." symptoms. nothing fancy really. nothing shocking and out of the ordinary. you just dont feel good.
and that's how john was. he wasn't feeling good. but he was functioning fine. we went to bed. we watched tv the night before. we woke up and snuggled. it wasn't like he couldn't get out of bed or had any crazy fever. etc.
in fact, i read that myocarditis can only be actually detected through a heart biopsy.
some people get it and have no idea... and then they get better the next day... or, they have heart failure.
it is completely unfair. it's completely random.
it makes no sense. this whole thing doesn't. the virus doesn't either.
it's not hereditary.
it's not contagious.
it's just a freak of nature thing that someone tagged a fancy name on to.
it
and now that I know... do I really feel better?
absolutely not.
knowing doesn't bring john back.
i am glad i can explain it to people.
i am glad no one has to let their imagination run wild anymore
i am relieved it can't be passed on... to me or his family
but in the end i think about how through knowing all of this scientific research.. my soul still longs to understand the meaning of it all.
no fancy medical term can describe my own condition.
i am completely at a disarray. i am at a dead end here.
all i have is a fancy word.
but i am still clueless and empty.
this rare, undetected thing stole john. it snatched him away from me. and i am pissed.
there is no cause to join. no fundraiser for a myocarditis foundation. no myocarditis support group.
it's a term that so far... no one had heard of until this point. at least that I know of. i didn't know it existed... nor did I want to know. because before then i was living in my happy little bubble and NO ONE could burst it.
except for this.
except for the thing i dreaded the most.
when asked my worst fear i always replied "losing someone i love..."
what do you do when your worst fear becomes a reality?
that's like telling someone who is afraid of spiders that they will be surronded in a room with them for the rest of their life. no escape.
they have to deal with it.
i have no escape.
i have to deal with my worst fear daily.
so now that i know. now what?
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