Coping
Patient and Caregiver Diaries
Patient Diary -- The Life and Times of Alex
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Till they return
This was the weekend we said good bye to Dan. They had a ceremony in Waco's Baylor University Stadium in honor of all those leaving for Iraq in the next few days. It has been harder than anything I've ever been thru. I'm exhausted both mentally and physically. I so badly didn't want to fall asleep last night. But even before 11pm, i was out cold, well warm but you know.
Today we checked out of the hotel, ate breakfast, and drove back to Frt Hood. The line of cars of soldiers and their families was so long, several miles long at least i'm sure. So we said good bye to dan, trying so hard not to cry. The kids were crying so much it made me start. I cannot believe I won't see my husband for 18 months. Yes, it started out being a year from deployment plus 6 months of training, but it was recently extended to 18 months from deployment.
Be safe hunny. I love you forever
^i^
To my Hero, my husband
Come what may, Josh Groban
Never knew, I could feel like this
Like I've never seen the sky before
Want to vanish inside your kiss
Everyday I love you more... and more
Listen to my heart
Can you hear it says
Telling me to give you everything
Seasons may change, winter to spring
But I love you until the end of time
Come what may
Come what may
I will love you until my dying day
Suddenly the world seems such a perfect place
Suddenly it moves with such a perfect grace
Suddenly my life doesn't seem such a waste
It all revolves around you
And there's no mountain too high
no river too wide
Sing out this song and I'll be there by your side
Storm clouds may gather, stars may collide
But I love you until the end of time
Come what may
Come what may
I will love you until my dying day
Ohh come what may
Come what may
Dan called!
Dan called last night! It's so good to beable to hear his voice so often! I know that once a week really isn't often, but last time he went, it would be at least a month between the times he would be able to call. He has to stand in lines as long as 3 hours to be able to call.
I've been so frustrated with the cell phone company because when i called, one lady told me that Dan could call for free using his cell phone. She said, just see if it works when you get your bill. I said I couldn't afford such a bill from Iraq. She said she would put my on international roaming. I called a few days later to see if everything had been taken care of, it hadn't.
The lady I talked to promised she would get International Roaming for me, but that there wasn't anyway they would say Dan could call for free. I hung up exaperated. Called back, talked to a man who said the same thing. i asked to pseak with a manager. She never called back. I called back again yesterday, spoke right away with the manager and she is trying to find what she can do. says dan's phone isn't even a world phone. how can i get a world phone for him? she will find out for me. SHHHHHHHHHHHHHHHHHEEEEEEEEESHHHHHHHHHHHHH
I'm hating my cell phone company
Dan says he will be going onto his next desitination in the next couple of days.
God protect him and guide him home safely!!!!!!!!!
A Soldier's Wife
A Soldier's Wife
I am an American soldier's wife
I stand with pride in my eyes
I know to my husband, there is a higher calling
that I will never fully understand
I am not a warrior, but I have the inner strength of one
Sometimes I am lonely, but I am never alone
I am one of millions, and the one and only
I stand by my husband's passion for freedom
Knowing that his call to duty may come any time
I know he may die for what he believes in
And I know he is willing to sacrifice
For the betterment of the world, and what's right
I am strong, independent, and capable
Sometimes I have to raise our children by myself
Sometimes I sleep alone
Sometimes I cry tears of worry
And sometimes I sit by the phone
The unknown can often fill me with fear
As I sit waiting for a single word to ease my mind
But I know sometimes no news is good news too
And that it doesn't help anyone if I whine
I know I can make or break my soldier
And that my words can be the food for his soul
I write him when he's gone and love him when he is near
And the good memories help me to stay strong
I don't just think of patriotism as flags and fireworks
I live my patriotism each and every day
"God Bless America" brings tears to my eyes
And the "Star Spangled Banner" makes me cheer"
I know my part in life is important
As a wife a child's mother, and a best friend
I have a strong sense of duty in all that I do
I know life is precious and can end
Sometimes the burden on my shoulders
can be so overwhelming to me
I feel I am always amidst a move
But even still, my love for my soldier holds true
It's not always easy being a soldiers wife
but I do the best that I can
When people say they don't know how I do it
To me it is easy to understand
I do it for passion, and for what is right
I do it for freedom and choices
And I do it for the soldier I love... the hero... who is my man
Meeting in houston
hi friends! Today, I went to Houston to see the transplant people. First, I had some blood drawn, then a spiral and 6 minute walk. after wards, i saw the transplant doc. everything was going well until we saw the doc. they fixated on my weight and that i had gained so much since 2001. well first of all, in 2001, i weighed only 92 lbs because of the flolan, it wasn't that i wanted to be so skinny but because of the side effects of flolan. then I got off of flolan and started to gain all the weight back. i had stopped at about 130.. even lost some weight. but then we went to california for a month for my sisters wedding and everyone fed us so well!!! plus cakes and deserts and and and and... and i gained... so they were complaining left and right that I had gained 40lbs... well... i gained because i got off of flolan..... then the little extra was from the trip to cali. the entire time, it was about m weight. and i know as soon as dr frost hears about it, she'll probably call me up and chew me out. or wait until i see her in november... i'm hoping to loose by november... going to the gym and al that. lol. yea right. at least i'm walking daily.
the docs decided that i shouldn' be on the list because i'm doing so well. i said i was not happy with that. he asked, do you want to be transplanted? i said. well no, but don't people with my condition go down hill fast? he said yes. and do we or do we not have time to wait on a list and be evaluated??? he said no you don't... he then said that they would keep me on the list in active but they wouldn't keep track of me.. just to continue with dr frost and then in a year, come back to see them. yea right... hopefully by a year, i'l be down to my perfect size, 120lbs. tmi i'm sure. oh well
with love
alex ^i^
Metoroid showers
Dear PHFriends,
tonight on our way back from school shopping at the mall, we saw something shoot across the sky.... metoriods!!! I gathered up the kids, and my friend grabbed hers, and we went out to look out point, aka make out point. there we sat from 9:30 am until about 20 minutes ago, gazing at the stars, marveling at the metoroids shooting across the sky. they were so beautiful!!! stunning is a better words! What wonderful things God has created for us!!!!! What a beautiful sight!
We were there for probably about 5 hours or so... but none of the time was anyone ever bored.... we told stories of our child hoods, told stories of different things in our lives..... we had fun and laughed all night long.. until we were too tired to stay anymore. this was the night the metoriods would be closer to the earth... a once in a lifetime opportunity... we grabbed it by the horns and ran with it. I know this will be something the kids will remember forever, i'm sure i will too!!!!!
What a glorious and beautiful night it was. just a slight breeze, a few clouds now and again, perfect temperature, perfect night!!
Thanks be to God!
with love
alex ^i^
Table'ing at Health Fair
I tabled at a health fair today where I set up all kinds of stuff with PH and Transplantation. I found 2 people I did not know who have PH and a lady that I had spoken to on the phone and finally got to meet today. Isn't that awesome?
Also a news reporter talked to me on camera today for more than 5 minutes and said I'd be on TV. however, since i don't get the channel due to dish network, i asked friends to watch and record for me. Unfortunently they did not show me. bummer. but still ok.
just thought I'd share!
with love
alex ^i^
I'm lost and I can't be found!
I'm lost and I can't be found. Everywhere I turn I bump into things. 1 step forward and 3 steps back. My time is not well spent. My children are literally driving me crazy. Finances suck, and I miss my husband do!!!!!
Not even going to the beach with my girl friend and her daughter helped to keep the blues away. The depression seems to be coming at me from all angels and now I'm so mad at everyone and anyone. I'm hollering just to hear my voice I think because even when I do yell, noone pays attention.
So once again, I'm lost and I can't be found. Is it the clutter of my life and home that's keeping me from growing and maturing? Is it the clutter in my heart and soul that is keeping me letting go and forgiving? Or could it be everything leaving me in a pit of dispair that is getting harder and harder to come out of?
The things that once brought me happiness are few and far between. So few things make me happy anymore or bring joy to my laugh. I was told I need to get a sense of humor. HA! Once upon a time I had a sense of humor. I was the class clown. not really, but it sounds good. I did know how to laugh and have fun. I did know how to take a joke as well. The jokes the kids these days are throwing around are nonsense and are used to hurt people. That's not funny!!!
oh well. another day another dollar
^i^
This morning
This morning I took my child to Walmart to buy her some sweats for PE. Green, Black and Grey were the colors. I also bought for her a bag of socks and a pair of gloves. Took her home to put on the sweats and she had a major fit. She couldn't find her athletics shoes and wanted to wear mine, ordinarily, i let her, but I'll be needing my shoes today. It's way to cold to be running around in flip flops. So she has a major fit and begins to throw things and yell obsenities etc. So instead of yelling back, I changed my voice to a Minnie Mouse voice and spoke that way for about 1/2 hour until they stepped out of my car and into school grounds.
They freaked out. What's mom doing? I was told that they hated this mom. they wanted the old mom back. I asked which mom did they want, they said the old mom. But I continued to speak like Minnie and freak them out. I will speak like Minnie all day if I have to.
We have an appoitment with a parish priest who will councle us and , I hope and pray , will get thru to the kids that I need help. THey say they are fed up with hearing how sick I am and how I need help. Well darn it!!! Help me. They roll their eyes when I say, I can't do this alone. I need help. When I ask that something be done, I'm told that I am a lazy *** and need to get up and do it myself. This has gone on for far too long.
I sleep all day. so if you can imagine, the house is an absolute wreak. However, when I did clean (i worked my *** off to clean) as soon as they got home, it was distroyed again. What am I to do? They aren't kindergarteners. For goodness sakes!! They are in Junior HIgh and are tweeners and teenagers. my little one, who is 9, helps more than her two sisters combined.
Oh well. Let's see how the minnie mouse voice goes over this evening. I will continue it and report back later.
^i^
Taking pictures and playing secretary
I love working on the computer and I love equally taking pictures. So when something came along that allowed me to do both, I snaged it as fast as I could. So far, it's not a paying position, but it will be as soon as the grants come in, and we know they will. But as for a real job, I'm still looking. I need something that will allow me to be home with the kids after school and be part time.
It will come soon. I have to have faith.
^i^
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