Good Times and Boxed Whine

Sunday, August 26, 2007

Summer has come to an end!!!

Well the summer is coming to an end tonight since tomorrow Dominic goes back to school. He'll be a big middle/Jr. High schooler entering the 6Th grade. Lucky for me his school; or actually the district that we live in schools are sort of ran like a private school, they go from kindergarten to 8Th grade. So he wont actually be changing schools. They separate the 7-8 graders from the rest, so 6Th grade to him will be considered the "Big kids on the block" So he is excited to rule the school so to say but has come down with a cold and is trying to convince me to keep him home tomorrow. Nope it doesn't work that way in this house. Last year he got the perfect attendance award and so we are striving for that this year as well. School is very important to me and I may push him harder than I should I really only do it for his own good. if I didn't he would really only do the minimum to get by and that won't cut it when he gets to high school. So sadly he'll have to go to school tomorrow even if he has a little runny nose. Poor guy I know, I'm a slave driver but he'll get better over night with a full tummy and a good nights sleep. Colds never last long for him.

I must say I have ended my summer with a bang. I actually got out of the house 3 days in a row. Can you believe it? The Lord gave me 3 days to feel good enough to leave this house. Thursday I went to dinner with Yvonne, Marie, Lucinda and Monica. It was great drinking wine and talking girl talk. I hadn't seem most of them since school got out so it was great catching up and just relaxing away from school (work). We all promised to do it more often because we agreed it was nice to let our hair down a bit and enjoy each others company. Yvonne later came over for a usual bottle of wine/talk about everything wrong with our life and everyone else's conversations. Man you give us a bottle of wine or two and we can't shut up. We will talk about any topic and think we have the whole thing figured out and by the time the night is over we will have changed our minds 100 times, to going back to being more confused than where we started before the 2 bottles of wine. She's such a great friend. I really enjoy having her here at the house and just like I said sitting, drinking wine and talking about our life, or a TV show, or actually we have gone through times where we don't even talk we take naps instead. I think I'm in love. LOL!!! Just kidding I know she reads this so I wanted to throw that out to her. :) No we would be more like the odd couple because we get a long really well but we are so much a like we are different if that makes any sense at all. We are each other ying and yang I guess and that is probably why we get along so well and have since the first day I met her.

Friday we went over to Dominic's aunts house and hung out for pizza and poker. Rachel's brother was in town from Washington so they invited us over so I could have a Navy wife to vent to about life since most of my friends now are all civilians, and Michael had another Chief (well he's retired now) to talk to about his future goals in the Navy and just to talk the whole Navy talk that Navy men love to do. So it was really nice they invited us over and we had a great time with all of them. Candy and Derek once again cleaned us out of all our change in poker but it was in all fun. Damn them I will beat them one day I swear.

Saturday Dominic had a pre-season game and although they lost, I think he had a great game personally. He's playing with kids his own age this year finally so he is pretty much playing all over the field. He plays line backer, and both offence and defense of line. He's a pretty busy kid out there but he enjoys it and I like watching him play a sport that he is good at. It took us forever to find a sport that he liked and was good at and enjoyed. As much as I didn't want him playing football when he was a baby, he had proved to me that this is the sport for him.

Today we relaxed and had quiet day because like I said tomorrow our life goes back to normal and so we all need to get back into the swing of things.

So until I can think of something else to write.
Carmen San Diego

3 Things I'm happy for today:
  1. Having 4 days that I feel good enough to get out and/or get stuff done around the house.
  2. catching up on all my scrapbooks and downloading all the photos off my camera finally.
  3. my new bible. I am enjoying reading it so much I really hate to wait to read more but I want to wait and keep to the schedule they have for me in my daily readings.

Wednesday, August 22, 2007

Philippians 4:13


The road to success is not straight. There is a curve called Failure, a loop called Confusion, speed bumps called Friends, red lights called Enemies,caution lights called Family. You will have flats called Jobs. But, if you have a spare called Determination, an engine called Perseverance, insurance called Faith, a driver called Jesus, you will make it to a place called Success.

-- Author Unknown

3 Things I happy about today:

  1. Still not getting up nearly as early as I need to for when I go back to work but I can say that I woke up today with out any pain and no major coughing. The world must be ending because I can't tell you the last time I had one of these mornings. I will try and cherish every moment of it today and get some errands done.
  2. My scrap books. I have almost got them all caught up to date and I am so proud of them. It's so great to go back and look at the work I put in them and the pictures and to remember what a great time that certain event was.
  3. Getting back into reading my bible. I bought a new one and it gives me something to read each day and it also explains the bible in a way a child could understand. Today I had to read Luke 18:1-14. It is a great section for me and for anyone who some times struggles with faith and thinking God doesn't hear my prayers. The bible is called "Life Application Study Bible". It truly is a great (heavy as heck) bible and I'd recommend it to anyone who has a hard time understanding the bible and the way it was written back in the day.

Sunday, August 19, 2007


Photo Sharing and Video Hosting at Photobucket

"If Everyone Cared"

From underneath the trees, we watch the sky
Confusing stars for satellites
I never dreamed that you'd be mine
But here we are, we're here tonight

Singing Amen, I, I'm alive
Singing Amen, I, I'm alive

If everyone cared and nobody cried
If everyone loved and nobody lied
If everyone shared and swallowed their pride
Then we'd see the day when nobody died

And I'm singing
Amen I, Amen I, I'm alive
Amen I, Amen I, Amen I, I'm alive

And in the air the fireflies
Our only light in paradise
We'll show the world they were wrong
And teach them all to sing along

Singing Amen, I, I'm alive
Singing Amen, I, I'm alive
(I'm alive)

And as we lie beneath the stars
We realize how small we are
If they could love like you and me
Imagine what the world could be

If everyone cared and nobody cried
If everyone loved and nobody lied
If everyone shared and swallowed their pride
Then we'd see the day when nobody died
When nobody died...


We'd see the day, we'd see the day
When nobody died We'd see the day, we'd see the day
When nobody died We'd see the day when nobody died

3 things I'm happy for Today:

  1. People who donate because they give some many lives to people like myself that with out them we wouldn't have a chance to live anymore.

  2. Finally having my appointments set for for my evaluation Sept 5,6,7 and 12Th (is the heart catheter)

  3. My new lab top that my husband bought me today. I should not have anymore problems regarding computer issues.

Wednesday, August 15, 2007

My feelings are hurt!

So in the past two weeks I've had 2 close friends that are or went through tough times not come to me because I'm sick. I am really sad by this because I feel like I can't be a true friend if people feel they can't come to me. Maybe I should take it as a compliment that they look at me and my situation so seriously but time and time again I've told them and everyone else that I do not want to be defined as my illness yet they don't feel comfortable letting me be a friend to them.

It probably wouldn't hurt so bad but truthfully this has happened to me twice in two weeks. Last week I finally got a hold of a high school friend and asked her if she was mad at me because she was ignoring me and she told me "no, I've just been going through a lot and didn't want to bug you because of all that you are going through." Then today I got an email from another friend pretty much telling me the same thing."I know you are going through so much with the transplant stuff that my problems don't compare." It actually almost makes me mad because they aren't letting me be the friend I know I am. Like they are walking on egg shells around me because I'm sick. Who cares if I'm sick or if I die, I still want to be a friend to the people who support me in my life. I vented to Mike about it, asking him if I come off stand offish and he said he didn't think I did but that he can see their side as much as my side wanting to be there for them even if I'm sick or not.

So if anyone else is holding out on coming to me for advice, to vent or just to chat in fear of you may upset me or bug me let me get one thing straight. I can only speak for myself, but I think a lot of people think this way who are living with a terminal illness. It's a lot easier to deal with someone else's problems than it is your own. Even if you aren't struggling with an illness it still is a lot easier to not think of your problems for a bit and help others; be a friend. I sit all day long dealing with my disease and wondering if and when I'll get on the list for a transplant, wondering if I'll need to take vicodin to get through the pain from my joints, wondering if I'll be more winded today than yesterday and wondering if I'll ever be "normal" again. These thoughts are what keep me up at night and what stress me through out the whole day. So when someone comes to me to vent, or to talk, cry on my shoulder or anything, I don't look at it as "Shit, I can't even believe they are coming to me with their little problems." I look at it as "Thank the Lord they are coming to me", because for that moment I feel normal and my head is not loaded with all the crap I fill it with when I'm sitting alone.

I've said this time and time again; I don't want to be define by my illness and when people feel they can't come to me because of it, it causes me to be defined by it. So please don't alienated me let me be your friend I have always been and don't be afraid to come to me. That is the last thing I want. HONESTLY!!!

3 things I'm happy about today :

  1. My 2 friends who have not come to me because they worry too much about my well being. I wont give your names out but you know who you are. Thank you for worrying about me and my life but please let me live me life to the fullest until my time is up. With out you coming to me and being a friend to you is not letting me live to the fullest so stop. I WANT to be here for you. I'd tell you to leave me alone if I really felt you coming to me was causing me more stress or issues.
  2. God for giving me another day on this earth. I may be fighting a cold or something but hey I'm alive and can't ask for much more.
  3. AC because it's been hotter than heck these past days here in Santee.

Sunday, August 12, 2007

Does this Chair make my butt look big?

Little humor for this hot lazy Sunday!

3 things I'm happy for today.
1> Sleeping in again. I love the weekends.
2> Mike turning the AC back on I guess while I was sleeping.
3> The condos' pool because today I think I may talk the boys into going there. If not I'm going to lay out on my balcony and read my book.

Saturday, August 11, 2007

What my pizza says about me

What Your Pizza Reveals
People may tell you that you have a small appetite... but you aren't under eating. You just aren't a pig.
You are a very picky pizza eater. Not any pizza will do. You fit in best in the Northeast part of the US.
You like food that's traditional and well crafted. You aren't impressed with "gourmet" foods.
You are dependable, loyal, and conservative with your choices.
You are cultured and intellectual. You should consider traveling to Vienna.
The stereotype that best fits you is guy or girl next door. Hey, there's nothing wrong with being average.">What Does Your Pizza Say About You?

3 Things I'm happy for today:
  1. The weekend being here and being able to sleep in.
  2. Going to Hall's house for dinner. Yum they are great neighbors.
  3. Email it sure makes it easy to keep in touch with everyone.

Thursday, August 09, 2007

It's these times

Its days like when my husband says he doesn’t have faith, and that is why it is so hard for him to be religious and wants to go to church that makes me wonder if I should feel the same. I mean if there really was a God would he put me through so much each day and have my friends and family suffer with me? Would he have war and world hunger and would he have others suffer in ways that I can’t even imagine?

It’s days like last night that I can’t sleep and wonder am I not sleeping because maybe if I fall asleep it will be my last night? Or is it just these thoughts that keep me up all night?

It’s days like today that I force myself to get up early so I can start getting my body ready for when I have to go back to work and I can’t seem to do it. It took me one hour and a half (with out taking a shower) to leave the bathroom, because I am coughing, gasping for air and blowing my nose for so long I just simply can’t get ready and I wonder “Am I going to be able to do this in a few weeks, get up every morning at 5:15am and make it to work on time, or should I call Mary now and tell her I can’t do it any longer?”

It’s mornings like today that I wonder if I am going to be strong enough both physically and mentally to handle a transplant; better yet get on the list or have we (me and the doctors) waited too long and my time is up?

It’s days like today when I know that it is going to be an emotional rollercoaster for myself today because I have all these thoughts in my head and wonder what can I do to get these thoughts out of my head. It’s easy to just say “Don’t think about them, think of the positive but it’s hard and I’m not sure anyone who is living with a terminal disease is always positive.” I wonder if I should seek professional help but fear they may put me on an anti-depressant and the medication will cause weight gain and since I lost all this weight to get on the transplant list I don’t want to jeopardize gaining any weight and them telling me that is a reason for me not to be a good candidate.

It’s times like today that I feel like just crawling back in bed and starting over but know the best thing for me to do is to just get the day over with and start over tomorrow. That my days like today usually don’t last longer than a day and that tomorrow I will be back to my chipper self, I just need to let myself feel this way and go along with the process and get over it like I always do.

3 things I am happy for today:
1- Finally getting out of the bathroom and catching my breath.
2- A journal because writing in here really does make me feel better than bottling it up inside.
3- The power of prayer because I know that God hears me when I’m weak like today and will get me through this day and all the rest. He has a plan for me as he does everyone and I don’t think my story is done quite yet.

Monday, August 06, 2007

UCSD visit finally

Okay so I finally got to see Dr. Yung after 4 cancellations. When I first got there I was so upset because he was asking questions like he had never seen me before and talking to me like I waited to long to see him and what not, when I haven’t been the one who has been cancelling on him it’s him or his office who has been calling me and rescheduling my appointment. I just broke down and he actually left the room to talk to my regular doctor Dr. Shah to discuss what was going on. It was then that Mike said in a firm voice “Now is not the time to break down, you need to be strong now for him and your own good and break down once we leave the building.” He held my hand and understood what my frustration was but also knew that I had to shake these tears and get it all under control. So, a few minutes went by and he returned with no luck at trying to get a hold of Dr. Shah so Mike took it upon himself to get a hold of him while I talked to Dr. Yung. So, I took a short breath (because I can not take deep breaths anymore) and apologized to Dr. Yung for breaking down. I told him I was just really worried because I am getting worse everyday, my husband sees it, I feel it and Dr. Shah can see it in my test results. That Dr. Shah has wanted me to see him for over 3 months now but it took forever to get an appointment and then they changed the date on me 4 times. I told him that I felt that it was going to be to late for me to even try and get a transplant.” He told me not to apologize but that it was very important to get me into UCSD for a Transplant Evaluation. That it needs to be done soon so I can get on the list. So, it was a long 2 hour appointment but I have sort of bulleted the key things that were said from my appointment below. It is going to take about 2 weeks to get the paperwork done from the insurance and to set my appointments up for my evaluation (which all test should be done in about 4-5 days) and then my results will be submitted in front of a board and they will decide then if I am a good candidate or not. So, hopefully if things go in my favor in about a month from now I will finally have my beeper and I will be on the transplant list.
I did find out yesterday that Dr. Yung is not my surgeon for my transplant and that he hasn’t done surgery in about 20 years, so that was a bit nerve racking to me because why am I even speaking to him if he isn’t going to be my surgeon. And he also told me that he would most likely remove himself from being on my board because I am his patient and they have to try and not choose favorites when it comes to transplants. That if it was up to him he’d put his ok for a transplant because I’m his patient and he doesn’t want to lose any patient, so again I was like “Why am I even talking to you if you can’t help me get on the list either.” But I guess that’s just how the process goes and I have to agree with however the process works. I just want to get on the list really. He did however tell me that he WILL help me try and stable me where I am today with medicine and one he mentioned was Viagra. Yes, Viagra. I guess it helps open the arteries and helps get oxygen to the lungs and heart. So I may end up being put on that medicine and also something called Tracleer I think that is how you spell it. I’m not to sure what that will do but he thinks I may benefit from it.

So in a nutshell:

1.I should get a call from UCSD by August 20, 2007 to set me up for my evaluation.

2.My evaluation will consist of numerous blood samples, CT Scans, bone density test, Pulmonary function test, 24 hour urine sample, 6 minute walk, check my esophagus to make sure it isn’t to messed up from my acid reflux, psychological evaluation, a 2 hour movie on what to expect , and the scariest one for me a heart catheter. I believe that is it. I’m sure there is more but those are the ones I remember him telling me.

3.I can finally stop my immunosuppressant drug since I have proven to tolerate it with no severe problems. There is a GOD!!! I am so excited to get off of that terrible medicine. Now I won’t be nauseous all the time.

4. Went over the cons of a transplant and told me everything that could go wrong from death on the table, to rejecting the organs, to cancer, kidney failure, my % for the 1st year and my % with in the 1st 5 years and what not. I think he was just covering his butt and trying to make me understand that getting a transplant isn’t a cure that there is still a lot of things that can go wrong but I don’t care, if it gives me a chance to see Dominic grow then I will do what ever I have to, to get that chance; even if it only gives me one minute longer.

So thank you all for your prayers and emails and everything else you have done for me and my family. This is just one of many humps I have to get through to get my 2nd chance at life and hopefully I’ll be a good candidate and will have that opportunity to run and play with Dominic again and to walk with out the help of someone or oxygen tanks.

3 things I am happy for:

1. Finally getting the ball rolling for my evaluation.

2.My husband because he truly is my strength and keeps my fears in check when I want to give up.
3.Having my first night with out having to take my immunosuppressant drug.

Sunday, August 05, 2007

I'm back from my "Woe me" vacation!!!


They say that prayer changes things, but does it REALLY change anything?
Oh yes! It really does!

Does prayer change your present situation or sudden circumstances?
No, not always, but it does change the way you look at those events.

Does prayer change your financial future?
No, not always, but it does change who you look to for meeting your daily needs.

Does prayer change shattered hearts or broken bodies?
No, not always, but it will change your source of strength and comfort.

Does prayer change your wants and desires?
No, not always, but it will change your wants into what God desires!

Does prayer change how you view the world?
No, not always, but it will change whose eyes you see the world through.

Does prayer change your regrets from the past?
No, not always, but it will change your hopes for the future!

Does prayer change the people around you?
No, not always, but it will change you - the problem isn't always in others.

Does prayer change your life in ways you can't explain?
Oh, yes, always! And it will change you from the inside out!

So does prayer REALLY change ANYTHING?
Yes! It REALLY does change EVERYTHING!

-- Author Unknown

3 Things I am happy about today:
  1. To finally be happy and understand that life (mainly my doctor visits) can't always revolve around me. I need to know that others are also in need of lungs and may need them more than myself.
  2. My husband and son because they really helped me get rid of this funk I was in.
  3. Everyone for giving me my space when I asked to be left alone for the past week.