marilynn07's Xanga

It's been a year

Fri, 20 Jul 2007 13:30:51 GMT

My last entry was in March of 2006. Things in my life were upside down. I took my hubby to FL to an extended stay hotel which became our home for 6 months. We spent 3 months during the liver evaluation doing every test known to man and some they made up just for him I think.

In July early one morning, the phone rang. Hi had the opportunity for a transplant. He took it. The transplant surgery began at 10:00 p.m. and lasted until 3:00 a.m. between July 8 and 9. So, he and I share a birthday of sorts. We'll celebrate together anyway. His transplant surgery was successful with no complications afterward. He was discharged to a regular room immediately post-op. Wow!

After that we spent a week in the hospital going to classes on how to take care of the new organ and help it stick. It was very intense. My daughter Rose was with us throughout the ordeal.

I must say I was extremely disappointed with my husband's family as none of them bothered to show up even for a visit. One of his sisters lived in FL at the time. Sad story...but extremely dramatic family with lots of issues that they don't want to resolve or let go.

It's been 1 year since his surgery. So, my perspectives on lots of things has changed. I'm happy to hang out with my family doing nothing! I'm also happy to spend time with hubby. I do wish he would get out of his current funk and try searching for work. It's been at least 14 years since he's pulled in a check. It would certainly help his attitude to be a wage earner.

Finally, I started a crochet group at my church. It's been going well, but there are always hiccups. I am faced with one now. I've been given a box of hexagonal motifs to finish a bedspread for a friend...but no pattern...I'm flummoxed. I'll post pictures of it, and if anyone has any ideas, please send to me.

That's all for now.

Jax FL

Fri, 24 Mar 2006 15:05:24 GMT

Life is evermore challenging as we continue the evaluation process for the liver transplant.

Hi is quite pouncy at the present, but he doesn't realize how he sounds...that's the beauty of being the speaker. I hate it when I feel he is talking to me like I'm a little kid or not real bright. But, he feels that i talk to him the same way. Let's just attribute it all to stress shall we.

We're living in a fairly nice extended stay hotel, but it's tight space for us. So, there are the occasional cat-fights.

I really want him to get a new liver soon. I miss his usually happy-go-lucky self. He really used to be a pleasant person. This illness has made him old, crotchety, and ill-tempered.

SNOW

Fri, 10 Feb 2006 11:22:41 GMT

It snowed. Got a much needed break from school. Yippie! I almost went sledding, but skipped. I watched the kids slide. We only got 2" and I didn't need to bust my butt on the ground.

It was fun...breathing in the icy air. Listening to the youngsters yip and holler. It made life bearable once more.

I saw 2 redtail hawks near by and had to find where they were perched. I love those predatory birds. There is some deep affinity between them and me.

Friday, February 03, 2006

Fri, 03 Feb 2006 23:28:41 GMT

Three reasons I love being a vision specialist.

1. I get to meet kids who are resilient.

2. There are people in the world who have more problems than I do.

3. I get to let regular ed teachers look through the vision problem eye kit that I bring with me to my meetings.

Today I had a preliminary meeting with a parent and her daughter. The daughter already has a CD out. Imagine that. It was a tearful meeting because the child's vision seems to be deteriorating. I try to support a child in regular public school with the tools and necessary items that will help that child access print media, develop social skills, acquire vocational skills, and support the skills of daily living. She was avoiding lunch because she was afraid she would trip and fall with a tray in her hands and the others would laugh at her. The attitude of the regular teachers is sometimes appalling though. They act like the child is "faking" it in order to get a free ride or attention or some kind of extra stuff

Today is Rose's birthday!

She's the one in the middle with the orange life vest on. Today she is 11 years old. I got her a sequinned purse. We'll see how long that lasts.

We're still waiting to hear from the transplant center. The doc here in our little town faxed the information down to the transplant center. Now, we're in hold mode! The wait is very nearly unbearable!

Hi is doing ok today. Yesterday he was moody and snappish. Moody...like a little kid on a bad day... Snappish like an old woman who's not the center of attention! It's the ammonia in his blood that makes him act like that.

Sunday, January 29, 2006

Sun, 29 Jan 2006 12:58:14 GMT

Hi there,

Things are getting interesting. I got the packet of information from the Liver Foundation. More paperwork to fill out. However, looks like we might be able to make this work to get money. I hate this. I'm too Southern (read proud) to ask for money. I need a war chest full of cash. I've been reading blogs from other transplant receipients. Over $1500 per month for hotel stays. YIKES! Plus money for food, gas, travel expenses. And, that's not counting medical bills.

However, I have faith in my God who will supply everything I need. I'm finding out who my friends are. And some who are coming out from the woodwork are amazing me.

Please pray for us. We need it.

Tuesday, January 24, 2006

Tue, 24 Jan 2006 11:22:44 GMT

Today, Hi is coming home from the local hospital. Now we "hurry up and wait". Get to the transplant hospital...go through the preliminary testing and typing...and wait! This is tough!

Sunday, January 22, 2006

Sun, 22 Jan 2006 14:01:16 GMT

Today, Wow! I have been dealing with this hepatitis thing with my husband for 13 years now. Tha't a long time. I've wanted for him to be able to get on disability, but no...he could work...according to the agents...now he has to pay in so many $$$ because he hasn't worked in too many quarters. It's insane...and if he works...well, he's not disabled is he? Hmmmm.

Well, he's getting on a transplant list for his liver. We now get the opportunity to find out who our friends are. We're going to have to come up with mega-bucks somehow to pay for lodging, transportation, and meals at another living location that is not here. I think we can manage it, but not without help. Fortunately, Hi's doctors think he is a good candidate for the surgery and has a good chance at long term survival once the diseased liver is out and a healthy liver is in.

He doesn't want to die in Florida, so I guess, if it looks like he's going to die, I'll have to quick pile him in a car and head back to Tennessee. Whew!!! Men are so strange, but I know how he feels, maybe we can just head out to the beach?

So for my Xanga friends, please look here for ways you might be able to contribute, help, or pray for us. We NEED all the prayer cover we can have. Right now that seems to be the most important vehicle toward getting our needs met.

So, I'm on the left, Hi is in the middle, and our dear friend Ed is on the right. God willing, we'll be praising Him in song once more.

Friday, December 23, 2005

Fri, 23 Dec 2005 03:55:39 GMT

"We reject the false doctrine that the church could have permission to hand over the form of its message and of its order to whatever it itself might wish or to the vicissitudes of the prevailing ideological and political convictions of the day."

You are Karl Barth!
You like your freedom, and are pretty stubborn against authority! You don't care much for other people's opinions either. You can come up with your own fun, and often enough you have too much fun. You are pretty popular because you let people have their way, even when you have things figured out better than them.

What theologian are you?
A creation of Henderson

Friday, December 23, 2005

Fri, 23 Dec 2005 03:54:56 GMT

I haven't posted in what seems like forever. I've been playing music with my friends from church. Sometimes it feels more like another job than a joy to praise God with music and song. Who knows???

<center><table border="0" bgcolor="black" cellspacing="1" cellpadding="0" align="center" width="200">
<tr bgcolor="#998888" align="center"><td>"We reject the false doctrine that the church could have permission to hand over the form
of its message and of its order to whatever it itself might wish or to the vicissitudes of the
prevailing ideological and political convictions of the day." </td></tr><tr bgcolor="CCAA55" align="center">
<td>You are Karl Barth! You like your freedom, and are pretty stubborn against authority! You don't
care much for other people's opinions either. You can come up with your own fun, and
often enough you have too much fun. You are pretty popular because you let people have their
way, even when you have things figured out better than them. 
</td>
</tr>
</table> <a href="http://steve.faithweb.com/quiz/theologian.html">What theologian are you?</a>
 A creation of <a href="http://steve.faithweb.com">Henderson</a></center>

Thursday, August 04, 2005

Thu, 04 Aug 2005 02:04:25 GMT

Hi all,

When it rains it pours. I lost my mother on the 29th of July to a massive heart attack or a stroke. We didn't have an autopsy done as she was 78 and in frail health. There was no evidence of foul play...so the death certificate says natural causes.

The hard part of it all is that my aunt blames herself. She and my mom lived together. However, my mom died in her flower garden among the black eyed Susans. I can say that I would like to go quickly and outdoors.

It was bad on us to travel. I now owe the bank because the price of gasoline killed us. Oh well, I'll get paid in 7 days. I'm holding my breath waiting on some $$$. I still have to drive to work though. It's insane. I can't afford the gas for the car that gets me back and forth to work. Maybe it's time to think about a different job.

Hmmmm...What next?