Patient and Caregiver Diaries

Patient Diary -- Alex Flipse

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Tuesday, January 22, 2002
Good morning friends!

Good morning friends!!! today is January 22 and it's 10 am. it is amazing!!! i am still awake at 10 am. what's so amazing you ask? i'm not awake usually until around 11am or 12pm. i have been awake all morning. haven't gone back to bed. i am so full of energy and joy and happiness!!! i truly believe i was being over dosed on flolan. i say this because i wasn't eating, drinking, sleeping all the time, not enjoying my music or tv at all. I Almost ran the other day too!!!! My pace is picked up almost twice as fast i as going before. i don't need to park in the handicapped space, but not too far away from it. i walked the entire length of target and walmart on the same day. what can i say? Praise GOD!!! the funny thing is, while i was ill and depressed, i began reading about Praising God in all things. ALL THINGS. i began praising HIm for my illnesses and all that was going on. ALl of a sudden, i woke up with the Spirit inside me. i was over come with joy!!! a few days later, i felt so much better!!! i could cook. i could eat after i cooked, instead of going straight to bed. i don't know exactly what happened. i think that going down on flolan and my realization that i needed to Praise God came hand in hand. i believe that is how our Lord wanted it to be. i have never been this religious in my life, that i can remember. the biggest thing for me besides having energy.. is i am able to eat again. not too much... but i can eat. so much more than i was before. i was going days without some type of nourishment. i am eating !!! the other day, i was speaking with phcentral to start a list for parents who have ph and are struggling to raise their child(ren). Now!!! i am moderating that list!!! everything is going so fast. but i praise God Almighty. I also believe i know why i was brought to Texas. This is where the best ph doc is. This is where i wound find myself and my family. find myself and what i could do. find my family in the respect that i know now how much they mean to me. took me this long, but it has happened. lol. so many people said, with a terminal condition, you learn not to take things for granted. you learn to smell every rose and see everything for what it is. the beauty in it. well. if you haven't seen it, don't despair. pray for light. pray to the HOly Spirit, and to your angels. God will show you the way. He has me. God bless you!!! ^i^

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Saturday, August 07, 2004
I can't sleep

I just finished watching  a movie, my head is begining to hurt, and I cannot sleep. Each time I try, my head fills with images of my husband leaving for Iraq, and my eyes fill with tears. It hurts so much i cannot breathe. And i have to take a huge sigh in order to release some of the pain i am feeling. In just about a week, he will be leaving for training. " Desert WarFare" "operation free Iraq" why can't they free themselves? why do we have to be the world's police? it's not  fare.

 

I just cannot imagine 18 months without him. at least that is what they are saying now. But we know that the way the military is, it can turn into 24 months.... 30 months.... i just cannot think of it.  I've always had a way of not thinking about the hurtful things, the sad things. in my head, i'd have a song going. i can not find the music in my head tonight. the pain is too much. and I don't want to lie in bed crying. he needs to sleep. he's been working so hard to get things in order before he leaves. he's planned everything to a T so that I won't have to worry aobut anything except getting thru the day. and trying to sleep.

I can not imagine , nor do i want to, what it will be like without him. All i can do is pray to God beg and please that He not llet him go. I'm at a loss.  I do not know what else to say. The pain is too great, and i'm going to have to keep cool for the kids too. i'm going to be a single mom for so many long months. how can i be a mom and dad? they love their father so much.

there isn't anywhere i can go to. nothing i or anyone else can say.

i cannot look back at what i wrote last time to see if i mentioned the beautiful gift i received from him. but i was so stunned and trying so hard not to cry. it felt like a  good bye gift. how awful is that?

writing this down and being able to express my feelings this way is such  a huge help. maybe i can sleep now. probably not. but i can try again.

 

^i^

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Tuesday, September 07, 2004
Here again, gone again

Friday after work, I drove 6 hours to pick dan up in killeen... i ended up in waco. I was paying attention, but still was unable to find the right turn off. I would have driven further just to see him.

So I turned around and finaly was able to find the right road. Full of frustration, I arrived on base. The did a search of my van, made me stand in a huge line (even though i told them  I wouldn't beable to to do it cuz of my disability. they didn't even care). It was awful. hot and humid.

After leaving there, I arrived where Dan was. He called and told me how to arrive at the barricks. it was very easy.  There were many in the parking lot, loading gear and equiptment to go home for the weekend. It was like a sea of guys with green bags. 

We brought another guy back with us, and ended up home at 11pm. i left town at 1pm after work. Talk about a long day!

The weekend was wonderful. Dan was exhausted but did all he could to have a fun time with me and the kids. They had given him immunization shots and one in particular left a huge lump under his skin that was weeping. He instructued us not to touch it because it was very contagious at that point.  I reminded him once again not to take any pills he didn't know what they were. It was those pills, I believe, that left soldiers and marines incabable of bearing children, and made them more suseptable to illnesses out there. what did they call it?  Gulf War Disease.

Monday morning came all to quickly. We had breakfast with his mom, and he played basketball with the kids. Meanwhile, I was taking all the pictures I could of him with the kids. They need good memories.

He loaded up his truck before 1pm and went on his way. before he left, he gave me a huge hug. Going thru my mind was "Remember his skin. Remember his smell. Remember his lips on yours. Remember his touch and rough skin. Remember."

Before he pulled completely out of the drive way, I stick my head in the window for one last kiss.  We were all bawling. the girls and I watched him until we couldn't see him anymore.

 

Again , we are alone.

^i^

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Monday, October 18, 2004
Kids and daddy

Saturday night, Dan arrives home for a long deserved break from Frt Hood. I was going to drive up stead to save him the drive time and the exhaustion that would follow. Last time he drove up, or maybe I should say down, he slept almost the entire time he was here.  But he was adamant about me staying here and he coming to us.

 

My kids had a sleep over to go to, but they really wanted to stay home to see daddy for a few hours before going to bed, but I convinced them to go to the party.

Dan and I had a wonderful evening. We didn't leave the house but it was awesome nonetheless.

The next day, we went for breakfast with his mom. Afterwards, I picked up the kids at the party. They were so excited to get home to see daddy!!!

We did see daddy, but only for a short while since he left that evening at 6:30 pm. Drea promised she'd stay up and wait for his phone call saying that he arrived safely.

This morning, when I woke up, my oldest was with me, my youngest was in my oldest's bed and my middle daughter was in her own room. they had played switch beds in the middle of the night wanting to find comfort and solace.

Drea wasn't going to school, she swore, but ended up going anyhow. And as I dropped them off, they all gave me a big hug and kiss. Usually, they would all run off without so much as a wave goodbye. Today however, Drea came back and hugged my neck and didn't want to move.

I can still feel her pain. Over and over they would ask me last night, "why does Daddy have to go? " All I could think of to say is "It's his duty"

 

January is coming to fast. already we are so close to the end of October. I thought to myself ,"This will be the last visit for October, then one  3 day visit in November, then Christmas and he is gone."  At Church, I was looking for the Sept readings. October!!!! we are in October???!!!???

I feel like raising my arms in anger and yelling Why!!! Why does he have to leave? We are his duty! We are his family! We need him here! When he gets back, the kids will be 2 yrs older. So much will have happened, and I will have to do it alone. My rock will be gone. My love. I cannot stand this.

There is this lump in my throat that will not let me breath and yet it wont go away no matter how many tears fall.

 

We took our Christmas card photo yesterday, Sunday. They will be so beautiful. The kids asked, why are we taking these now? I could only say, because we don't know when Daddy will be back.

I'm going to Frt Hood next weekend with the kids. Come what may. Nothing can stop us from going. I can't say nothing can I?

What an awful feeling. Having someone else control your life so much that you can't cry you can't laugh you can't breath it hurts so much.  What a terrible feeling. I don't believe it was this difficult last time he went. But then again, we didn't have kids then and I wasn't left in this God forsaken place.

 

Again, we are alone

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Friday, November 05, 2004
SHOP TILL YOU DROP!

Oh my gosh! There is nothing like a good old fashioned shopping spree. I have been so depressed  lately, and today, for the first time in many months, i finaly went somewhere else besides work and school. I went to Target, Walmart, Hoppy Lobby, Big Lots and Sam's Club. I didn't go alone either. Went with my mommy!!! So even better.
I feel like a million bucks ! No kidding! Shopping like that has always shooed away the blues.
My boss, bless her soul, gave me some money today, said, Go blow it on something nice. Well let me tell you, every last penny is gone!!! ROFL! and some out of the checking account! ROFL

I did mostly Christmas shopping, decorations and such. But I had such a blast with my mom!!!  What a good feeling. try it! you'll like it!!!


with love
alex ^i^
phcentral staff http://www.phcentral.org mailto:tips@phcentral.org
new email addy flipse@nodial.net

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Monday, November 08, 2004
Good bye to hubby

Hubby will be leaving soon for Iraq. Can't believe how difficult it has been this time around. Kids, Job, Illness make it even worse. We will be having this huge bbq for him so that all the people who worked with him can say goodbye. Cleaning is a must, but so difficult. Kids won't help. No matter, it has to be done. So here I am out of breath from mopping. Needed to take a break, so thought I'd write some in here this morn.

Have a half hour before I have to go to Sam's club with MIL to get things for the BBQ. So i guess i better get off of here and do some more mopping

^i^

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Tuesday, November 30, 2004
Auntie Debbie

Debbie came over for Thanksgiving. We had such a great time! Debbie is now active in the PH community. She's the support group coordinator for PHA and she loves it!

We had  great time cooking, playing, going out and generally being a nuisance.

The day we took Debbie to the airport,yesterday,  we went to the Hemisphere and site toured around it. We also ate at the top of the Hemisphere, where the room slowly spun, just enough to make me sick. lol. not literally, but dizzy. It was a wonderful day except for having to take Debbie to the airport.

Debbie is such a list maker, no wonder we are sisters! I make tons of lists. My problem is I forget them or lose them. Oh well.

One thing I have to say though, Debbie exercises every day. Forget that. I'd rather watch her exercises. lol

We miss her already, but know she's only a phone call or email away.

 

I am planning on going to see her in April, God willing. I hope it does work out. Maybe for my birthday?

 

with love

alex ^i^

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Tuesday, December 14, 2004
Missing Daddy

Dear Friends.

Dan called last night. He hadn't in about a week or so, felt longer. It was so nice to talk to him. Kids have been missing daddy so much lately.

This morning, I receive an email, a link to a page with a little girl's voice reading a letter to Daddy. my youngest was standing behind me, I didn't know, and she started to softly cry. I turned when I heard her, and was harsh when I told her to get away and stop reading over my shoulder. I told her she needed to get ready for school. Talk about feeling like a heel. She was ready, but had to put her socks and shoes on. As she was telling me about the letters to Santa they publish in the newspaper each year. The elementary schools have the children write in to santa and the paper publishes them. My  daughter said her letter read,

"Please bring daddy back from the war soon. Please let mommy  stay healthy so she doesn't have to go back into the hospital. and I want a Barbi"

OH my gosh! I started crying, trying not to let anyone see. She ran up to me and gave me this long hug.

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Wednesday, December 22, 2004
Merry Christmas

I was told br dr frost's nurse that I have the flu. I'm in such pain. my head aches terrible. I kept waking up every hour on the hour. When I got up to use the bathroom, I slammed my head on the door, I was so dizzy. lots of fun.

I'm on antibiotics now. so Im sure i'll  feel better soon, God willing. 

 

Just wanted to wish everyone a  Merry Christmas and happy new year.

 

with love

alex ^i^

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Saturday, December 25, 2004
White Christmas

As I sit here wrapping the last of the gifts, I catch myself gazing out of the window. Where once there was grass, now there lays snow. Beautiful white fluffy snow. The first this town has seen in many decades. Luzy, my youngest, asked for snow for Christmas. She got her wish. She also asked for her daddy to come back from war and that her mommy doesn't get sick again. On her letter to Santa tonight, she write, I want peace in my family. My middle daughter Carly wrote, Take care of Daddy. Let mommy and daddy have a good time together before daddy leaves. My oldest wants a neopet. lol. These are the days I will cherish. When my children see that life isn't full or roses, but they will make the best out of it no matter what. My kids will get their Christmas wishes. Except for my oldest.... what is a neopet anyhow?


Merry Christmas to all. Be happy. Cherish and hold onto those you love.


I love you guys
alex ^i^

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