My faithful readers and friends may recall two months ago when I made amends with a friend.You all may recall that I forgave this person and I was willing to re-establish our friendship. Now I know that I should not have done that.I had prayed to a God that I am not sure exists asking Him to tell me what to do. He told me to forgive this person.
Well that's the last time I ever pray because I did what He told me to do and you know what? I got burned in the process.This person is not worth my time or my friendship. They are a liar and just plain old cracker box crazy.
Sometimes you can forgive someone and things can go back to the way they were and sometimes you learn that there is a reason that this person slips in and out of your life.
I choose to focus my time,energy & love on people who I know have a good heart. Thankfully I have some amazing friends in real life who would stand by me no matter what.
Friday, June 29, 2012
Wednesday, June 20, 2012
Relief
When I got the news on June 14th I just felt a flood of relief. Tears streamed down my face and I thanked a God that I'm still not even sure exists. My niece did not have some crazy GI disease.She simply had a milk protein allergy.That was something that was much easier to deal with.
I had never felt so relieved in my life. I had been so scared for about a week while we waited for the biopsy results.I had armed myself with lists of information.I had stayed up into the wee hours of the morning doing research after research.Looking at all sorts of things.
When I got the results my first thought was relief but my second thought was that I had wasted a lot of time doing a ton of research.But then I quickly snapped out of that thinking because I knew that all the research I had done was not a waste of time.If my niece had been diagnosed with this GI disease I would have been a VIA (Very Informed Aunt)
Even though I have not had the chance to meet my niece yet,I know that she knows how loved she is by everyone in our family. I know how relieved we all are that things turned out in the best possible way.
First family picture.Just looking at this makes me smile. I love you three!
I had never felt so relieved in my life. I had been so scared for about a week while we waited for the biopsy results.I had armed myself with lists of information.I had stayed up into the wee hours of the morning doing research after research.Looking at all sorts of things.
When I got the results my first thought was relief but my second thought was that I had wasted a lot of time doing a ton of research.But then I quickly snapped out of that thinking because I knew that all the research I had done was not a waste of time.If my niece had been diagnosed with this GI disease I would have been a VIA (Very Informed Aunt)
Even though I have not had the chance to meet my niece yet,I know that she knows how loved she is by everyone in our family. I know how relieved we all are that things turned out in the best possible way.
First family picture.Just looking at this makes me smile. I love you three!
Friday, June 8, 2012
The Waiting Game
I've played the waiting game before.
But this time it's so different. We aren't waiting for news about my health at all and if possible playing this waiting game is even worse.
We're waiting to find out the results of a biopsy that was done on my ten week old niece.
Yes you read right...My ten week old niece has already undergone more than she should have at her young age.
Now we have to wait three to five days for the results.I know the waiting is hard on me,I cannot even imagine how hard it is on my sister.We texted for a bit last night and I could tell that she was scared.
I reminded her that it's okay to cry (as a matter of fact I'd been crying most of yesterday) and she informed me that she had been crying.My heart ached for her.I wished so much that I could be with her,holding her hand,letting her cry on my shoulder.When I told her that,I could practically hear the tears when she texted back "I wish you were here too"
Last night was unbearably hard for me.
I struggle daily with God's existence and this certainly has not changed.I would trade places with my niece in a second.I don't understand how a higher power could allow this type of thing to happen to a tiny baby. Why not the rapists & murderers out there?
Why my niece?
But this time it's so different. We aren't waiting for news about my health at all and if possible playing this waiting game is even worse.
We're waiting to find out the results of a biopsy that was done on my ten week old niece.
Yes you read right...My ten week old niece has already undergone more than she should have at her young age.
Now we have to wait three to five days for the results.I know the waiting is hard on me,I cannot even imagine how hard it is on my sister.We texted for a bit last night and I could tell that she was scared.
I reminded her that it's okay to cry (as a matter of fact I'd been crying most of yesterday) and she informed me that she had been crying.My heart ached for her.I wished so much that I could be with her,holding her hand,letting her cry on my shoulder.When I told her that,I could practically hear the tears when she texted back "I wish you were here too"
Last night was unbearably hard for me.
I struggle daily with God's existence and this certainly has not changed.I would trade places with my niece in a second.I don't understand how a higher power could allow this type of thing to happen to a tiny baby. Why not the rapists & murderers out there?
Why my niece?
Thursday, June 7, 2012
An Aunt's Fear
When I first learned that my half sister was expecting I was thrilled.Our half brother had recently welcomed a son and I was so glad to know that our extended family was getting even bigger.I hounded her and hounded her to talk to her OB about my heart history and to keep a close eye on the heart.When she went to into labor at 32 weeks I was sick to my stomach.I spent much of that time crying.I was scared and not being able to be there with her only made it worse.She miraculously kept my niece safe inside of her for six more weeks. Lillian Renay was born at 5:25 am on March 30th.I was relieved to know that my new niece was healthy.
During the first two and a half months of her life,she had had a lot of GI concerns.I wasn't scared until I saw today's picture.She's back in the hospital.My sister is scared and she needs answers. Right now doctors only think they know what's happening. Nothing is definite yet.Again,I'm scared and not being able to be with my sister is awful.My whole heart is with them right now.I need answers too.Not as much as my sister does but I am one scared aunt here.
I think it's probably a good thing that I am not there with my sister and the baby.I would be hounding the doctors.They would probably run far away from me.
Please pray for some definite answers for my sister and her baby.Whatever it is,I will be there in spirit when I can't be there in person.When I can be there in person,I will be.
During the first two and a half months of her life,she had had a lot of GI concerns.I wasn't scared until I saw today's picture.She's back in the hospital.My sister is scared and she needs answers. Right now doctors only think they know what's happening. Nothing is definite yet.Again,I'm scared and not being able to be with my sister is awful.My whole heart is with them right now.I need answers too.Not as much as my sister does but I am one scared aunt here.
I think it's probably a good thing that I am not there with my sister and the baby.I would be hounding the doctors.They would probably run far away from me.
Please pray for some definite answers for my sister and her baby.Whatever it is,I will be there in spirit when I can't be there in person.When I can be there in person,I will be.
Tuesday, May 29, 2012
Love is Love
Last night I had just finished re-watching an episode of Grey's Anatomy where a lesbian wedding takes place and I couldn't help but wonder if my very Catholic grandmother would find it in her heart to attend my wedding if I fall in love with a woman. I don't want to get married without her there,but I don't want her to be there if she can't support me.
My grandmother has been there for me from the very beginning. She helped my mom raise me. She stayed nights with my in the hospital.She bombarded the doctors and nurses with countless questions.There's no doubt in my mind that she loves me and that she would lay down her life for me in an instant.
But will she love me as much if I fall in love with a woman? Will she find it in her heart to attend my wedding? Those were the questions that plagued my sleep last night.
My grandmother has been there for me from the very beginning. She helped my mom raise me. She stayed nights with my in the hospital.She bombarded the doctors and nurses with countless questions.There's no doubt in my mind that she loves me and that she would lay down her life for me in an instant.
But will she love me as much if I fall in love with a woman? Will she find it in her heart to attend my wedding? Those were the questions that plagued my sleep last night.
I can't imagine getting married without her.Yet I don't think I could make the woman I love wait until my grandmother dies to get married.
I wish I could be certain that I would have her acceptance but I can't be. But I don't want to hide in the closet from her anymore. I want her to see that no matter who I love,that I am still her granddaughter.
That will never change.
Wednesday, May 23, 2012
Mish-Mash
Well my CT results are in and the good news is that I am not in Left Sided Heart Failure and my EF is 48% Bad news is that I have 2 aneurysms.One is 3.2 cm & the second one is 2cm.Right now they will just keep a very careful eye on them. They won't repair them until they get to about 5.5cm. My conduit looks good as well (another yay) So no surgeries in the near future!
But what I really want to talk about is the subject of interrogation. I have the utmost faith and confidence in my medical team and if they didn't think something was in my best interests then it wouldn't be done.They plan to keep a close eye on the aneurysms by yearly CT. Having someone question that decision today pissed me off.Of course we discussed the risks and benefits and my cardiologist and myself both agreed that the benefits of yearly CT scans FAR outweighed the risks that come along with radiation.
I never would have agreed to something like this unless I understood the risks and to say otherwise is a slam against my intelligence.Exchanging information is one thing but to immediately start questioning the decisions I made with MY medical team makes me livid.
So parents remember that the Adult CHDers that you know or are getting to know are likely just beginning to take over their own care and they need compassion,not interrogation.Adult CHDers,remember to be kind to one another.Some of us are still learning certain things and MANY of us like our cardio team and have faith in them and the decisions that are made jointly.
Everyone is different.Every person.Every cardiology team.Every CHD and every plan.
Remember to respect one another.
But what I really want to talk about is the subject of interrogation. I have the utmost faith and confidence in my medical team and if they didn't think something was in my best interests then it wouldn't be done.They plan to keep a close eye on the aneurysms by yearly CT. Having someone question that decision today pissed me off.Of course we discussed the risks and benefits and my cardiologist and myself both agreed that the benefits of yearly CT scans FAR outweighed the risks that come along with radiation.
I never would have agreed to something like this unless I understood the risks and to say otherwise is a slam against my intelligence.Exchanging information is one thing but to immediately start questioning the decisions I made with MY medical team makes me livid.
So parents remember that the Adult CHDers that you know or are getting to know are likely just beginning to take over their own care and they need compassion,not interrogation.Adult CHDers,remember to be kind to one another.Some of us are still learning certain things and MANY of us like our cardio team and have faith in them and the decisions that are made jointly.
Everyone is different.Every person.Every cardiology team.Every CHD and every plan.
Remember to respect one another.
Wednesday, May 16, 2012
My nightmare
Ever since I had my cardio appointment on April 30th and learned that my left ventricle had decreased function I have been scared. I saw my echo report 2 days later and my fear only intensified as I saw the words Indication: Left Sided Heart Failure. My mother assured me that he had only written that on the report so that we could get the Cardiac CT approved by insurance without too much BS. I wasn't so sure about that.
Last night I was looking forward to a really good night sleep as I was officially on Summer Break! Sleep wasn't easy on me. I had a dream in which I had gone in to see my cardio and he was telling me that there was nothing else they could do for me and that I had to go on the Heart Transplant list. I remember just crying and crying and demanding to know why he didn't warn me of this possibility when I had gone in to see him at the end of April. I remember him telling me that the Cardiac CT results showed him that despite me being basically asymptomatic,I was in need of a new heart.
I remember throwing a model of the human heart at his head and crying for my mom. I just remember that feeling of complete terror. My worst nightmare had come true. I remember my mom hugging me and making demands of the cardio (I don't know what those demands were) I remember bits and pieces of the rest of the visit. I remember the drive home. We were both crying and my mom was insisting that this had to be a mistake.
....Then I woke up.
Last night I was looking forward to a really good night sleep as I was officially on Summer Break! Sleep wasn't easy on me. I had a dream in which I had gone in to see my cardio and he was telling me that there was nothing else they could do for me and that I had to go on the Heart Transplant list. I remember just crying and crying and demanding to know why he didn't warn me of this possibility when I had gone in to see him at the end of April. I remember him telling me that the Cardiac CT results showed him that despite me being basically asymptomatic,I was in need of a new heart.
I remember throwing a model of the human heart at his head and crying for my mom. I just remember that feeling of complete terror. My worst nightmare had come true. I remember my mom hugging me and making demands of the cardio (I don't know what those demands were) I remember bits and pieces of the rest of the visit. I remember the drive home. We were both crying and my mom was insisting that this had to be a mistake.
....Then I woke up.
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