Life with CF

2007-05-27T07:46:00.000-07:00

My grandmother was a pretty good poet I have come to find out. I found several of her works and present them to you now.

"Peace On Earth"

This earth is peaceful once again,
And all the world is gay,
We've fought a bitter battle through
But victory is here to stay.

God hear our prayers for all the boys
Who gave their lives that we
Could have our peace, good will towards man
To keep our country free.

Bless all the Mothers, Fathers too,
That they can stand the day,
When all the sons are coming home,
But theirs are left to stay.

"Cornelia Moody Reeves"

"Moving"

When I am moving from a house,
There is a part of me,
That does not want to go away
But clings to memory.

These walls--This room, all seem so dear,
They are a part of me,
They hold the secrets of my life
To guard eternally.

My little kitchen, snowey white,
This room--My pride and joy
The funny little cookie jar
Has fed my hungry boy.

The nursery too, I bid adieu,
And kneel in silent prayer,
I'll move and leave this house today,
But leave my heart right there.

"Cornelia Moody Reeves"

Gods Little Angels

God came to me in a misterious way,
And whispers in my ear.
"I've a heaven full of angels,
And one that I can spare,
Im sending you the extra one,
Your heart will be filled with joy."
When I opened my eyes this morning,
I fell to my knees in silent prayer,
to thank the God above,
for one of his little angels,
My very own to love.

(This original poem was written by Cornelia Reeves, now Pelletier, on Feb. 6th, 1943 for Micheal Dee Roy Reeves. Micheal was born on Feb. 6th, 1943, He is now at this date ??? 51 years old. He will always be my baby)

"Cornelia Moody Reeves Pelletier"

P.S. Michael Dee Roy Reeves is my father.

Update - Long Overdue

2006-06-04T10:43:00.000-07:00

Well, not alot has happened since my last post. Ok, maybe alot has happpened. Let me go over these things.

Christmas was enjoyable and we had friends and family come over and celebrate. A week after, my wife found out about a home ownership program through the section 8 program. She looked into it and thought it was something we should participate in.

My wife attended several classes for cleaning up our credit and preparing us for purchasing our first home. This was something that she was already in the process of doing, so some of the thing being taught was old hat for her.

Around this time, I started being worked up for a lung transplant over at Baylor Hospital of Dallas, and get on the list over there. The staff is most wonderful and a great releif from the treatment I was getting at my old hospital.

February 25th, 2006 we closed on our first home, 4 Bedrooms, 2 baths, 2 living areas, 2 car garage, sprinkler system, 2098 sq feet for $135,000. We absolutely love our new place. Its a long way from apartment living and little bit of culture shock.

May 24th, 2006 I had all of my teeth pulled, I am now toothless, and what a relief it is. I found out that I had two impacted wisdom teeth and they might have been causing alot of problems, like chronic pain, lethargy, neck and back pain. I am in much better spirits and feeling 110% better. I even purchased a cake for my doctors to show my appreciation for what they did.

I hit lvl 60 on World of Warcraft. Woo hoo!!!. Althought this is a minor detail in my everyday life, I feel it is an accomplishment in itself. I finally can start finishing the game that I have been playing for months.

I found a great blog of a couple that recently got married and are spending their honeymoon traveling around the world. They were both Television hosts on the cable channel G4TV - Attack of the Show (previously The Screen Savers). Check them out here.

That is about all I can think of at this point, till next time.

I'm Done

Happy Thanksgiving

2005-11-26T03:21:00.000-08:00

I've negleted this blog for too long now. Quite alot has happened since my last post, I don't think I can go over everything though. The biggest thing right now is my wife's mother received her liver transplant. We are so happy for her, and she is doing so much better. She has had some rejection, but that is normal in all transplants in the beginning. They have to find the correct combination and level of anti-rejection medication to keep the liver from rejecting anymore. Doctors say she will be going home soon.

Myself, I have a liver biopsy on Tuesday. They are checking on my portal hypertension of my liver. If it isn't that bad, they will go ahead and list me on the lung transplant list. If it is bad, then it rules out me being qualified for a transplant all together. If my liver is not good, the rejection medication will harm my liver more. The body cannot survive a lung / liver transplant, so I would not be able to get new lungs if my portal hypertension is bad. Everything that I have seen and heard is that my body is passing with flying colors. I'm a little worried about my liver, but not to the point where I'm going to stress out about it or get depressed. I'm, oddly, optomistic about this. I guess I have learned to be this way by taking care of my wife who has Multiple Sclerosis and Fibromyalgia.

Happy Holidays to all.

I'm Done.

Not Going to Louisiana

2005-09-02T21:45:00.000-07:00

Its not because of Katrina either. The hotel is raising their prices by $100 for the Labor Day weekend. We are postponing it until next weekend.

We are helping out at a friends garage sale. Been going through the house again, picking out stuff to sell. It's more of donating items to the friends sale, as they need extra cash. They were recently let go from work due to not enough work. They will be happy to receive as much as possible this weekend.

I have a doctor's appt next month and I hope that I can finally get on the lung program soon. I hate coughing so much that I gasp for breath.

I've been doing alot of that the past couple of days. I will be doing my treatments, go into a coughing fit, start gasping for breath, start to sweat heavily around my face and neck. I will then need to raise my oxygen level and turn on the small fan I have set up on my desk to cool down. After I finish my treatment, I'm usually feeling better, but I also sometimes need to do a second treatment right after. I am completely exhausted afterwards and can lay down to sleep for hours. It's amazing to me that I get so exhausted after that. I also tend to not eat either, as the exhaustion takes away my appetite.

We hope to get our car back from the shop tomorrow. Til next time.

I'm Done.

Going on Vacation

2005-08-28T16:15:00.000-07:00

Hah, its been like a vacation already. I went to the local water park and Hurricane Harbour the next day. I have a nice tan now and we were going to go to six flags on Saturday, but the kids said they were too tired to go.

Now, we are getting a sitter for the kids and we will be off to Shreveport for some nice R&R and gambling. I can't wait to taste the crawfish.

Still have not heard from the hospital about my transplant status. I have to go through another round of tests before I am accepted into the program. We'll just have to see.

How I'm Doing

2005-08-20T06:19:00.000-07:00

Hey Everyone,

It's been a while since my last post, it has been slipping my mind alot the past few weeks. I'm doing rather well, I'm back up to 18% capacity, up from 12%, and I've gained 5 lbs. too.

Yesterday seemed to go on forever. Wife and I went and did some errands and took the kids clothes shopping at JC Penny. The kids had to play in the clothes racks and they got in trouble a couple of times too, likely story there huh? We then went to the local newspaper to get copies of the circular from a week ago. The kids pictures are in the newspaper doing their swimming lessons that they finished up on Thursday of this week. They say that they are 'popular' now, so cute.

Last night I went to go play in a card tournament for another card game called Magic: The Gatehring. This is the first theme bases card game ever. It started back in the 80's and has survived until today, going stronger than ever. Last night was a 'sealed deck' tournament. For $20, you receive five packs of 15 cards each, and of the 75 cards, you are to build a 40-card or more deck. You are then paired up with another player where you play a best of three match. After everyone has played, scores are totaled, and the winners play winners and losers play losers of the last match. There a total of five matches and I won one out of those five, which I think is fantastic for me. After the five rounds, the top 8 players play a three match elimination tournament to determine the ultimate winner. The grand prize of the tournament is 16 packs of cards, and at $3.69 a pack, that is outstanding prise support. There were 32 players last night and I just had a blast.

I got home around midnight last night and I was beat. Took a scorching hot bath, did a lung treatment afterwards and passed out.

I'm Done.

I'm Back

2005-07-07T05:16:00.000-07:00

My father has been updating the blog lately, I will resume updating this myself. I'm anxiously waiting to hear from each and every one of you.

Please drop a comment or two. Thanks.

We saw a movie together

2005-07-07T05:06:00.000-07:00

Dan was able to venture out today to do several things. He joined his wife and myself to visit a lawyer about creating a living will and giving power of attorney to his wife and myself. I was able to get a terriffic deal on all three documents, under $200.

Afterwards, we headed out to lunch at Saltgrass Steakhouse. This is a texas style resteraunt that serves outstanding steaks and fresh sweet potatoes topped with brown sugar and butter. The atmosphere is a dude ranch style setting, wood railings, bull horn chandeliers and on open fireplace for those cold winter days. Dan ordered an 8oz steak, with vegetables and ceasar salad. He was able to clean his plate, a good sign that his appetite is back.

After getting home from lunch, we decided to go see "The War of the Worls" with Tom Cruise. A great movie and an excellent remake of a super classic movie.

Dan has clinic on July 12th. I will update you all then.

Dan is home and much better

2005-06-25T19:05:00.000-07:00

Dan had a good day, some friends came by and played cards, his spirits are high and He is feeling better. Friday July 29th will be an all day affair at the hospital for transplant evaluation at another hospital.

Dan in Hospital again

2005-06-19T19:02:00.000-07:00

Dan had a critical situation this last week. Sunday Dan wasn't feeling so great so Karen checked him into St. Paul's emergency hospital.

He was not eating, running a slight fever, couldn't breathe easily, had pneumonia, and generally rundown. Tuesday the 14th his pulminary (lung) functions were down to 12% capacity, where just a week ago he was at 19%.

He was not doing or feeling well at all. So the family sat around the hospital encouraging him to health. Of course the doctors were pumping him full of antibiotics and we were just the cheerleaders.

I am happy to say that he is sitting up, looking better, acting perkier, the pneumonia has quit growing, eating a little more, and is generally feeling better. So another crisis is behind us.

In addition to Dan's double lung transplant, there will be anti-rejection medication that Dan will have to take after the transplant untill, well for the rest of his life. That medication has now escalated to $30,000 per YEAR, and still climbing.

Not Doing Well

2005-06-11T00:09:00.000-07:00

I haven't been here for so long, I forgot my username and password. I had to recover it. Boy do I feel dumb.

I went to a CF clinic this past Tuesday and my condition has gotten somewhat worse than I thought. My doctor authorized a motorized scooter for myself, which he has been against for some time because he wants me on my feet, excersising. Anyway, I measured 16% lung functions again, and I have gained 3 lbs. Today, I am back down another 5 lbs, due to struggling to breathe and sweating in the process. I move very slowly, literally at a snails pace. I can barely prepare myself anything to eat or drink, I have to ask the wife or the kids to help.

My wife has ordered me to do nothing, but rest and try to recoupe. That is exactly what I am trying to do. I have some pain in my chest, not sure what it's from though. I also have some pain on my left side, just below the last rib. Hurts like hell when I take in a deep breath.

I am on oxygen 24/7 now, when I go out, if at all, I go in a wheelchair. My scooter will take some time to arrive. It's way to hot and humid for me to go out. I'm getting dehydrated pretty fast. Explains the weight loss.

My appetite is very poor. I was only able to get down one teriyaki chicken rice bowl and a can of spagghetti-O's all day today. Yes, I need to eat more, I'm just having a time coughing up 5 oz of gunk, gasping for breath at the same time and trying to get up and eat something. Moving around while I gasp and cough almost makes me want to pass out. I think I've done 10 lung treatments today, I usually only have to do 3 or 4. Gives a little more insight on what I'm dealing with.

The doctor also wants me to refile my insurance papers at the transplant center to look at my financial situation again. The government has changed alot of things with Medicare and Medicaid as well as the organ distribution program in the DFW area.

Things are starting to roll again with the transplant again, I hope I can survive long enough to have the darn thing. At the rate that I have been going in the past, I surely would not have.

I'm Done.

I'm Home Now

2005-05-17T17:06:00.000-07:00

I was able to find a home health care company that will take my insurance. Last time I was in the hospital, I had to stay admitted for 21 days since I had no home health care company to do home IV's. They told me that one opened last year, and now I'm set up to do the IV's at home. Thank the lord.

At the hospital before I left, they measured my lung functions and I am back to 19% lung capacity, which is where I was at three months before I was admitted. I'm happy to be home and free of the small prison that I was in.

I will keep updating on my progress at the home IV's progress.

I'm Done.

Once Again

2005-05-16T00:18:00.000-07:00

On the tenth of this month, I had a CF clinic appointment to go to. I wasn't doing very well, I was in good spirits and I knew that my lung function test was going to be low. I just didn't know how low it was going to be.

On the way out the door, the kids alerted my wife and I about some trouble with the cat. It seems that the animal had injured itself somehow and was not wanting anything to touch or pick it up. We tried giving some treats to her, and as she got up to take the morsel from my wife's hand, I saw the side of our precious cat open up and show a huge gash on her side. We are assuming that she had gotten herself into the window again where we had put some old computer parts out the night before. She must have fell onto these parts with sharp edges. She was very fortunate to live through this ordeal, had the cut gone any deeper, it would have pierced a lung. My wife had to rush the cat to the vet as I went to my clinic appointment with my father.

At the appointment, I had to get some bloodwork done, a new chest xray and then I was able to take the lung function test. I measured at an 19% three months ago, and this time I measured at a 16% lung capacity. Almost a 20% drop in function. The doctors do not like to see more than a 10% drop at a time. They felt that I might be coming down with something and decided to admit me to the hospital.

That is where I am now. I am blogging from my hospital room at 3AM, staring at a glowing screen letting all my readers how I am doing. Please let Flirt know about my situation, I wasn't able to post on her blog, something funny is going with the provided computer here. I'm sure that she would like to know what is going on as well and will put a word out about my situation.

So sorry for the length in posting times, I just have been engulfed in webgaming for so long, I lost sight of the reason I started this blog in the first place. I do hope to get back on track and post daily again. That is, until I get out of the hospital, I don't think that will be happening.

Talk to you all soon.

I'm Done.

Been a Long Time

2005-04-23T22:30:00.000-07:00

Yes, It's been a while since I've posted here. I have been just enthrawled with the online games. I also found a good emulator to play the old Super Nintendo games on my computer too. The website that I found it on has all the games that were ever made for the SNES, and some I've never heard of too. I'm terribly sorry for those who have come without getting an update. Just remember, leaving comments here will notify me that you are eager to hear from me.

I am doing well, I haven't had many problems lately. Been losing sleep a little, but I think its my eating habits too. My appetite is a little sluggish and I haven't been eating like I should.

I think I'm getting the ball rolling with Baylor now. I just sent off the medical release form so they can get the medical records from my 2-3 hospitals that I have been to in the last 3 years. This will give them a little history on me and better prepare a plan for my lung transplant. My goal is to transfer to Baylor hospital and be a patient at their transplant center. The one that I am at currently, if you've read my blog you know this, is requireing a $150,000 deposit and would like me to have $250,000 on hand for after transplant care and prescription drugs.

Please bear with me, I may not post as often as I thought I would, but I do still want to keep this up, at least for my own sake.

I'm Done.

Gaming like crazy

2005-04-09T22:20:00.000-07:00

Hello to all my readers, an update on me...

I've been neglecting the blog because I have been playing too many games online. My kids and I have also been playing with Star Wars Miniatures. I'm a fan of Star Wars, but not a fanatic freak like some people can be. I don't own any action figures from my childhood and I don't currentl have any of the movies. I was introduced to the minis game by a friend and I was reluctant to buy any. I wasn't really sure if I would fully enjoy the game. After finally buying some and playing some games with MY minis, I became totally hooked. I bought a case of minis yesterday, 12 boxes are in a case, and 7 figures are in each box. I pulled a super rare Emporer, super rare Darth Vader and some other figures that not everyone will be familiar with. I'm playing my kids in the game and they are beating me at it too. We are having so much fun. So its kind of a good thing that I'm spending more time with the kids, but then I start on the internet games and I'm lost for hours.

Been doing fairly well, but I have had my bad days. Monday and Tuesday of last week I wasn't doing so hot. I was almost not able to have people over on Wednesday night. I gotta have my Wednesday night or I will become antisocial.

Can everyone leave a comment and say Hi today? I'm not sure if anyone is reading this or not. Would you like email updates so you know when I post here, so you don't have to keep coming back to a blog that is not updated? Please let me know. Thank you.

I'm Done

Doing Well

2005-03-31T20:07:00.000-08:00

I am really suprised at how well I am doing lately. The bactrum must really be helping me get around and feeling good. Yesterday, I was able to take a shower, clean the kitchen and vacuum without taking a break. That is a first for me, I'm usually gasping for breath.

I've found some new game sites that deal with 'virtual' worlds. The first one I found is Torn City. You are a member of an online community that is open for about anything. You can become a crimelord, a stockmarket guru or a mass murderer. Whatever your fancy, you can just about become here.

Another one is about 'virtual' pet dogs at Furry-Paws. You create your own dog, or adopt one and train him to do tricks, play with him, take him to dog shows and win big money. It's quite fun, and a big time suck too. There are two others that are simular that I found also. Pure Felinity for cats and Horse Land for horses. I've got my hands in everything now. It's way cool for me though. Have fun!!

I'm Done.

Somewhat Better

2005-03-26T21:54:00.000-08:00

After getting some Bactrum in me, I am starting to feel a bit better. I didn't have to wear my oxygen today, a big plus, but I have been very sleepy. I woke up at 6:30, did my morning treatments, went to the living room to watch TV and proceeded to fall asleep until 11:00 am.

My father came by today, we played some cards and talked a bit. He's starting to work around where he lives, which is very good for him.

I hope I can keep my health up until Monday. Wife doesn't want me in the hospital.

Sick Again

2005-03-26T12:25:00.000-08:00

I have been under the weather the past couple of days. I called into the CF clinic to either have an antibiotic to help me or be admitted to the hospital. They called in Bactrum again and if I'm not better by Monday, I'm going in.

I hate being sick, I can't breathe, sleep, cook, or move. I've been real irratable since I ran out of my anti-depressant and not getting any sleep. I'm doing a little better today, just that I had two chocolate ensures this morning that I eventually threw up an hour later. I've kept lunch down so far, knock on wood. We'll see about dinner.

Hope your doing better than I am.

I'm Done.

I need my Mobic

2005-03-22T21:30:00.000-08:00

I recently ran out of my pain medication, Mobic, and I didn't even realize it 'till today. I took my meds and noticed that my Mobic was missing ( I prepare my meds in weekly pill cases that will go through four weeks ). Then I realized that that might be the problem I have had lately, difficulty getting up in the morning because I am extremely stiff. Without my Mobic, this can be a real challenge for me, I plan to refill it tomorrow, I will have the car then.

I've also had some difficulty breathing too. I seem to become short of breath when I walk down the hall, I might have to wear my oxygen tomorrow as well. I've taken almost six neb treatments today and I did about five yesterday. It might have to do with my missing Mobic too.

Tomorrow is Wednesday and it will be short of attendance. My father is working again and one of my friends is changing to Friday Night Magic, a different card game.

I'm Done.

Hobbits and Saruman

2005-03-20T06:47:00.000-08:00

The Lord of the Rings tournament was yesterday and I had alot of fun. I recieved the Saruman deck that included Saruman and Uruk-Hai minions. It also had Hobbits and a couple of rangers to defend Frodo and his quest to destroy the 'One Ring'.

I had to face two types of decks, the Saruman deck that I had and a Mouth of Sauron deck that was a whole lot more powerful than the Hobbits. The Mouth of Sauron deck contains 'Evil Men' and the Mouth of Sauron too. The fellowship defending Frodo is Rohan, and they did much better against the uruk-hai. I didn't win the tournament, but I did get some cool product and had alot of fun.

I had some trouble getting up this morning, pain and sleepiness were in the way. I went back to bed after my treatments and almost missed my ride to the tournament. I got a little out of breath, but I was able to prevent myself from needing the oxygen today. A friend came back to the house with me and we played some more. We also had some games of Star Wars miniatures and Magic: the gathering.

A Task To Be Done

2005-03-15T21:02:00.000-08:00

I had some trouble getting up this morning. I was in some pain, not sure exactly where, but I know I was hurting. I don't think I got much sleep last night either.

I started to make a daily schedule for the kids, wife had some suggestions on modifying it and I want to do that tonight. Not sure if I can do it though, not enough time. I need to get some sleep tonight, people are coming over for Wednesday night tomorrow.

Wife went grocery shopping today, she came back with a ton of stuff and we almost didn't have room for it all. Both the deep freeze and the refrigerator freezer are stuffed full, the fridge itself is full and the cupboard are almost overflowing. She wasn't able to get all the fresh vegetables I wanted, but we should have enough for the next two weeks.

I modified my decks for Lord of the Rings today, I hope they work better than they have. I've been struggling against the elf decks. Their ability to kill everything that they face is really unbelievable, I just don't have all the cards to pull it off myself.

Doing my evening treatments now, just finished watching 'Project Greenlight' on the Bravo channel. They are making a horror movie this time around, to try to make some money for the studio. I liked the premier episode, I may start watching it.

I'm Done.

Getting back on track

2005-03-14T18:15:00.000-08:00

It's been a good while since I was here. Life has gotten in the way a bit.

I finish up my patch study on Wednesday. $120 buck my way, woo hoo!!! We signed the boys up for swimming lessons and they start on the 21st. Three times a week for four weeks. Summer is coming and they really need to get rid of the floaties.

I have been doing very well these past few days. Yesterday I made my chicken pasta salad, boxed it up and delivered it to my pharmacy. My favorite pharmacist is leaving for Waco and I had to give her a going away present. I do this about every 2-3 months. I make a whole bunch, package it up and give everyone on the staff some. They are usually very grateful because they didn't bring lunch that day or didn't have enough to eat. It's always well timed. Grilled chicken, multi-colored rotini pasta, chopped celery, chopped carrots, quartered and sliced cucumbers topped with italian dressing. Mmm, Mmm, Mmmmmm! Good stuff.

It was a little breezy and cool yesterday too, I got a little out of breath, but I think it was good since I didn't break down into a massive coughing fit. My legs were very sore the rest of the day though. Standing in the kitchen for so long was difficult. I took a steamy hot bath last night and it really helped out. I had to do a quick neb treatment after the bath, I seem to have to do that every time. I guess the steam just clogs up my small airways.

I purchased Civilization III for the PC and I'm just hooked. I've found myself up til 3:00 am playing this game. I enjoy it alot. I got it with my birthday money. This is one present that I will play with for a long time.

I'm Done.

Deborah Shaver

2005-03-14T01:24:00.000-08:00

I know you wanted to talk about CF, but the post doesn't give me an email address to reply to you.

Please send me an email here

Hope to hear from you.

I'm Done.

6:45 am

2005-03-03T22:35:00.000-08:00

That is the time I was born 36 years ago today. I was an early bird then, but I am not today. Far from it, more like a night owl.

It's my birthday and I will be going to "Central Market" for some live crawfish, 4-5 lbs of them, and cook 'em at home for a birthday meal. I'm not in the hospital, and I'm thankful for that. Going to a Lord CCG tournament Saturday, hope I win.

Here is my attempt of the ABC's.

A - Aggressive, some people think that I come off too aggressive.
B - Beautiful.
C - I spent a year studying art in College
D - Depression
E - Eager to have a lung transplant
F - Fun to be with.
G - Giving
H - Honest
I - I'm on the Internet alot
J - I haven't had a Job in 4 years
K - Kind
L - Loving
M - Monotonous
N - New to the blogging world
O - getting Older
P - Pessimistic
Q - Questioning
R - Run away from conflict
S - Simple
T - very Tired
U - Uncertain of my future
V - I often Vision myself as being very wealthy
W - Wishful thinking
X - Gen-X
Y - Youthful Looking
Z - Zeus was a cool when I was younger

I'm at home

2005-03-01T20:12:00.000-08:00

I went to clinic today and I was not admitted either. I am doing exceptionally better today and I'm glad to say that I have gained 2 1/2 lbs. My lung funtions are still holding at 18% and I have been instructed to excercise more. More mall walking for me then.

Thanks to all who had well wishes for me, I really appreciate it. I'll be home for my birthday.

I hear that crawfish are $2.99 a lb. at the store, might buy some for my birthday meal. Mmmm-Mmmm!

I'm Done.

Much Better

2005-02-28T13:29:00.000-08:00

I'm doing much better today. My breathing is unrestricted, my nose is no longer dry and I am not coughing constantly anymore either. The Bactrum is working wonders. I am very happy that I called when I did.

Clinic is tomorrow. When I called Wednesday, they told me if I wasn't feeling better by Friday, I would be admitted. I was doing better Friday, so I dodged that one, but now I hope the doctor doesn't admit me just because I haven't been in a while. After being as sick as I was, I won't fight him in his decision, but I don't want to be in the hospital on my birthday either. So, I'm hoping for the best tomorrow.

My father will be here at 11:00 am tomorrow morning to take me to clinic. He went with me last time, and he enjoyed it. I will not have a chance to post before I leave in the morning. I have my morning treatments to do and I will be busy getting ready as well. I will post as soon as I can after clinic.

I'm Done.

No Admittance

2005-02-25T21:34:00.000-08:00

Nope, no hospital for me. I am doing much better now that I have an antibiotic to help me. I started feeling much better this morning and I've been getting progressivly better as the day went on.

I just wanted to update on my condition since some of you might be concerned.

Thank you

I'm Done.

Hospital Stay?

2005-02-23T22:47:00.000-08:00

Today I found that my bloodsugar was really high. I checked it today and it was at 383. Anything above 200 and it starts doing damage to my body. So, I took some insulin. I rarely have to do this, but I did. About an hour and a half later, I bottomed out at a bloodsugar of 38. I was nausious, dizzy and not feeling well at all. I had a coke, some ensure and later had some ravioli's. I'm back to normal now. Thank you insulin.

The past three days I have been coughing up phlem that is green in color. This is a sign that I have an infection in my lungs. I've been short of breath, my appetite is lacking and I'm not moving around that much. I called the doctor to get an antibiotic. The clinic gave me a prescription for Bactrum. They said if I'm not feeling better by Friday, I need to come in to the hospital for a "Tune Up", as they call it. It's a 7-10 day stay in the hospital to get back my strength, but lately, the stay for me has lasted up to 3 weeks. I hope I feel better by Friday. I don't really want to be in the hospital again.

Wed night happened again tonight. I finally beat the friend who has stomped on my ever since I've known him. I get such a feeling of accomplishment from that, I'm not sure why, but I do. It's good to be top dog.

I'm Done.

Hopefully Getting Better

2005-02-18T21:29:00.000-08:00

Wednesday I was doing great. I felt good and I was able to be very productive around the house as we got ready for guests that evening. I did not cancel Wednesday, and I'm glad I didn't. I had a player come over who hasn't come over in a while. He lives about 30-45 min. from me and he took the time to drive down. It was great fun to play that night.

I swear, not 5 minutes from people leaving, did I start feeling worse. I got a headache, my sinuses were inflamed, I was short of breath and I started coughing alot more. My stomach started to ache and I was getting chills too, I felt like a truck ran over me. I felt the same, if not worse, the next morning. It took forever to warm myself up.

My arthritis was everywhere and I was walking around very slowly, with my arms very still and close, my shoulders were thrown forward and I was limping. I haven't had pain in my knees for a while now. Last night was probably my worst night so far. I was coughing up streaks of blood in my phlem while I was doing my evening treatments. The pain was dealable, but there to let itself known. My nose was extremely dry, but my sinuses were full of fluid. I couldn't breath through my nose and trying to blow my nose was nearly impossible, not only because of my sinuses, but the junk inside my nose was as thick as molasses (or tar, take your pick).

This is when I bring out, THE Q-TIPS. I take one, and insert it into one nostril. I'm able to push the entire q-tip into my nose, and that is what I do, just the end sticks out. I turn and wiggle the q-tip against the sinus and try to loosen any "boogers" that are back there. Hah! Haven't heard that in a while, "boogers" hee hee. Anyway, I take it out, throw it away and repeat on the other nostril. After that, I take a syringe, without a needle, fill it with tap water and squirt water up into each nostril, while bending over the sink. I try to breath in just a bit so I can get it to pass through the sinuses. This will make you cough, or sneeze. I also try to keep the water in my sinus as long as possible, squeezing the nostrils and massaging my nose with my extra fingers to circulate the water inside as much as possible. I let the water come out and fall into the sink, grab a tissue and blow my brains out. The stuff that comes out is an insanely large quantity of mucus of different colors, shapes and textures. Brown, yellow and red, looking crystals or small grain sand that feels both rough and slimy at the same time. It's just a totally gross out scene.

Today, I have been doing fairly better. I'm walking around without a limp and I'm loose too. I'm not holding my arms in close, my pain in my shoulders and neck is minimal today. I've been couging, but not alot like I have been. Sinuses are still dry as heck, and I can't seem to shake the scratchy throat. I'm very happy that feeling better is just a day or two away. I hope everyone else is feeling better this weekend.

I'm Done.

I'm Still Sick

2005-02-15T21:52:00.000-08:00

I guess I have what everyone else here has or had. I feel terrible. I was running a fever today and I had absolutely no energy. I'm dragging my feet and hobbling around like an old man. This is really kicking my butt. I feel helpless and a little guilty because I cannot help around the house. Wife is doing better, but not 100%. She says don't worry, but I feel guilty anyway.

Tomorrow is Wednesday night fun play, I am not cancelling it. I hope to feel much better tomorrow.

Two more episodes of NYPD Blue left. I'm sad to see it go. It was great episode tonight. The captain got shot in the groin area and may have some paralysis to deal with. Metavoy is leaving the 15th to be with this hot number who does real estate. He will do great I feel.

Survivor is premiering on Thursday. Another passion of mine that will again take up my Thursday nights. Ahh, reward challenges, immunity challenges, backstabbing, and the bitch, bitch, bitching that goes on. I can't wait.

I got some decsent sleep last night, I didn't get to bet 'til 3 AM though, but I slept until 11 AM. 8 hours, that's all I need. I can function on 5, 6 is better, but 8 is perfect. The sun usually wakes me up, or the noise of the kids.

Still have alot of pain in my neck and shoulders. My wrists and knuckles are doing a little better, not by much though. Headaches, sore throat and constant coughing with no production. My chest is starting to hurt too. I should feel better in the morning.

I'm Done.

Under The Weather

2005-02-14T21:54:00.000-08:00

I do not feel so good today. Wife and kids have both been suffering from a stomach virus and now I feel that I may be coming down with it. I woke up today with a mild scratchy throat and no energy. We went to the patch today, which went very well, and I started feeling a little dizzy after we left. Wife was feeling crappy, so I dropped her off at the house and I went and made a deposit at the bank. $50 from watching a neighbor's child after school for a week. It's only 2-3 hours a day, and we can use the extra cash.

I got home and we all took a short nap. I went to the oldest child's room to watch some television, I was out of breath just going around the corner. The phone was ringing off the hook today, and walking from his room to the phone was taking every ounce of energy I had to make it there. I did about 4 neb treatments today because of my shortness of breath. I'm really tired now.

I was supposed to cook dinner, but I was spent. We ended up ordering pizza and we all had 1-2 pieces each. I usually eat 4-5 pieces, feeling bad ruins my appetite. I am the cooker of the house. Wife absolutely despises cooking and is very grateful that I know how to cook and do it well too. Just some days I am unable to do so, and we either order out or wife cooks.

I'm coughing more, I feel my lungs sticking to the walls of my chest (I breath in and it feels like a bubble in my lungs, it hurts to breath in to a certain point, then it pops after breathing in fast and hard, easing the pain), I have very little energy, my appetite is down and I am very sleepy. I'm not sure how much sleep I will get tonight, because my coughing gets worse at night when I am in a prone postition. The drainage either from swallowing or my nose irritates my throat alot. I sometimes wake up coughing. It's not comfortable at all.

I will have to see how I am doing tomorrow, I might have to cancel Wednesday night cards this week.

That's all for tonight. I'm Done.

Another day....

2005-02-13T22:07:00.000-08:00

I don't work so I can't say 'another dollar'. Blasphemy! Anywhoo, I've been having more pain in the mornings again. I'm getting up at 9 am and not able to do anything 'til noon. So, I spent my time today watching 'Troy' and 'Underworld'. Two very good movies.

I saw the original version of 'The Grudge' about a week or two ago. It's called 'Ju-On' and it was a very scary film. These oriental horror films take a different approach to scaring its audience. It's not done through blood, gore and monsters, but more ghosts and real people. Mostly just powder makeup for effects, and it comes off really well. I'm not sure if I want to see 'The Grudge' now because I was really scared.

Tomorrow is the patch study and the begining of two weeks of patches on our backs. I had 15 people show up for the tournament, very suprising. We had alot of fun.

The kids have been ill the past couple of days, wife is getting it now. I will probably end up catching this bug. I just hope I don't end up in the hospital.

I'm Done.

Finally, Relief

2005-02-10T20:28:00.000-08:00

I refilled my prescriptions for some other pain meds and I had them this morning. Ahh, I felt so good today and it was refreshing to feel that way most of the day.

Despite my pain last night, wife and I had a roll in the hay. It was quite a night I have to say.

Received a call and we have been scheduled to participate in a different patch study that starts Feb. 14th that pays $120. It's a Monday, Wednesday & Friday patch study around the noon hour so it works out well.

I have a card game tournament this weekend, I hope to get 10 people to show up. If more than 15 show up, then the store will give away a T-Shirt.

Started on my anti-depressant too today. I'm really glad to have that now, I was feeling extremly down the past couple of days. I was irritable, short and pissed off Tuesday, and Wednesday I fell into a major depression. Nothing interested me and I wasn't motivated to do anything. I'm feeling a little better tonight, but I know it will take a few days to kick in. Only bad thing is it effects my sexual performance, bummer.

I'm going to surf some blogs tonight on blogexplosion, get some more credits, then I will play some Rollercoaster Tycoon. Might be time for a hot bath tonight as well, who knows.

I'm Done.

Ahhhh...

2005-02-08T20:56:00.000-08:00

I'm feeling better today. Still waking up with a stiff neck and shoulders, but they are feeling better faster.

Another do-nothing day. Wife had to run some errands today and was gone most of the day. Kids played games or joined me in watching endless television.

We got signed up for another patch study that starts on the 14th. It's an everyday patch, like the other one we did, and also pays $90.

Wife got some good news from a friend. She will be a main part of a business that her friend is starting. I'm going to start designing a business card, letterhead and logo for the business. According to everyone that we have talked with, clients, employees, friends and family, there is nothing like this business today. It will be completely new and will be a huge national success. This may be the break that we need to get out of the apartment and into our dream house.

Every action has an equal and opposite reaction. We have been helping people as much as possible, even to the extent of doing without ourselves. Hopefully this will be the reaction to all we've done. Oprah Winfrey, here we come.

I'm Done.

I'm Hurting

2005-02-07T23:46:00.000-08:00

I woke up today and I couldn't move my shoulders, neck, wrists or my left knee. My knuckles have swollen up to the size of grapes and it took me forever to take my neb treatments this morning.

I walked with a limp today because of my knee. My arthritis is really starting to bother me and I need to see the doctor soon. I barely moved most of the day today. I took extra pain medicine, tylenol and later had some advil. After about 4-5 hours, I was feeling a little better.

No coughing fits today, and I'm happy about that too. It hurts to cough.

Not much to say, since I didn't do anything due to my pain. These short posts make me think that I'm really boring. Hopefully you will still come back and check up on me.

I'm Done.

Interesting

2005-02-06T07:45:00.000-08:00

Woke up this morning coughing. I haven't done that for a while. I'm usually just wheezing. I tried sleeping without my oxygen last night. I figure that my oxygen dries me out so much that I am not able to cough anything up in the mornings. I wasn't dry this morning and I paid for it too...lol.

Going to go to my neurologist for a checkup. Need to see her to get updated prescriptions and see why I am in so much pain every morning in my neck and shoulders.

Yesterday was my father's 62nd birthday. My grandmother invited wife and I to go to dinner for this occasion. She took us to Saltgrass Steakhouse, a wonderful texas style steak resteraunt. I had a great time. My dad received 'Minority Report', a 'World of Tolkein' daily calendar and weekly planner that has crossword puzzles for each week.

Well, I hope today is a good day for me. So far, I think it's been a good week.

I'm Done.

Waiting...

2005-02-03T23:04:00.000-08:00

My wife had to go to her parent's house this morning to help move some things and get rid of an ant invasion they are having. She was only supposed to be there for a little while, but it ended up being an all day excursion. She got home at midnight.

I'm not angry, but we were supposed to do some things today that will have to wait now. We need to refill my prescriptions, go to the homeschooling store for supplies and go to the postoffice.

I receive a new portable nebulizer today. I ordered it about two weeks ago online. It was a banner advertising a free nebulizer. Well, it's not free, but just about. My copay is only $15.00 for this $200 product. It's cool as heck too. It has a rechargable battery, an adapter for the car and a hose so I don't have to hold the whole pump up to my mouth. I can also use all my meds with this one as well. This will help on road trips and vacations that I go on.

Woke up with the same shoulder and neck pain. It's the arthritis that is bothering me and my medication wears off from the night before when I wake up. First thing I usually do is take my pain meds, that is if I want to put the effort into getting up in the first place. Hee hee.

No real problems today. Just the usual morning coughing fit. I haven't been having the ones that almost get me to the point of vomiting, so that is a good thing. I'm always glad to not be in pain.

Watched a program about a man who was injected with fake botox and was paralized for two weeks. He described how he at first couldn't swallow when he arrived at the ER. Then his jaw locked up like he had lockjaw, he then couldn't open his eyes. Finally he was completely paralyzed, but he could hear everything that was going on. People coming up and asking how he was doing and not being able to respond to them. I was symathizing with him just thinking about how panic sets in when you can't swallow or speak or breath on your own. I can just imagine how scared he was during that whole ordeal. I scared myself even.

I'm happy that I can still breath on my own.

I'm Done.

Slow

2005-02-02T20:53:00.000-08:00

I woke up today not wanting to do anything. Wife and I had to take the kids to the orthodontist today and we had some other errands to run as well.

Wife wanted to leave today at 11:30 this morning, but I tried to extend it as much as I could. My shoulders were stiff as well as my neck, as they always do in the morning, and I was still sleepy from the short night's sleep I had. I had taken a sleeping pill the night before and I believe that it was still in my system when I woke up. I didn't get to bed until 2AM last night. That was because my pain meds were wearing off and I had a persistent cough that worsened when I laid down.

I had two couging fits today, but they didn't interfere with my schedule that much. I was able to set aside some time to calm down and take a neb treatment to open up my airways. Once was when we walked to the car after having lunch at Denny's. We walked out to the car and got in, I usually drive, and when I closed the door, I went into this loud, violent and lengthy coughing fit. I say a coughing fit when I cough and cough until I'm red in the face, I can't catch my breath and sometimes have difficulty breathing in. They usually end with one or two very loud coughs that bring up an unusual amount of phlem followed by some less intense coughs. They last until I am able to fully catch my breath, at which time I take a deep breath in and feel I can go on. It's often difficult to watch, because I have to recover from it myself, nothing really helps besides handing me the portable neb so I can help my airways. Otherwise you are just stuck watching me cough without a way to help me out. I end up telling my wife not to help me when she tries. She will just hand me a tissue or the portable neb, since she knows that I will need both.

The other time was when I was vacuuming the floor before people showed up for Wednesday night fun play. $0.25 hot dogs again and a few games of LOTR. Another friend came over and brought over some Star Wars Miniatures that he had purchased. This is another game that is simular to Dungeons and Dragons when you play it with miniatures as well.

Today was a slow day, but it turned out rather well in the end. Tomorrow we hope to finally start the homeschooling. Ha! Ha! I feel like we are more busy than when we were working full time.

I'm Done.

Nothing

2005-02-01T23:03:00.000-08:00

That is what I did all day long today. Nothing. I watched a few movies today, "Johnny Mnemonic" and "School of Roch", both very good movies. I was informed by my sister in law that Comcast is offering On-Demand movies. They have a large library of movies that you can 'rent' for a 24 hour period for $3.99 each. When you watch your movie, you can use your remote to play, fast-forward, rewind and pause the movie. You can even stop the movie and come back later to finish it from the place you stopped at.

I saw that they have "Ju-On", which is the original japanese title of the american version "The Grudge". I saw the original version of "The Ring" and it was just as scary, just no blood and guts. The japanese have an excellent way of filming a movie without stage blood or using elaborate special effects, and it still having a horrific effect on the audience.

Today was a good day for me in general. I still am waking up with headaches and stiffness. It goes away in an hour or so after taking my Tramadol and Naproxen. I cannot have narcotic medications because I have 'Portal Hypertension', which is high pressure of the bile ducts in the liver. It's common in CF patients, its also progressive and will eventually require a liver transplant. I'm hoping that my judgement is correct this time and I will not have to have a liver transplant for a long, long time. When I heard about my needing a lung transplant, my wife and I were under the impression that I had 15 years or more before we would have to start thinking on that subject.

Wife received a call today from a friend about her thermostat being blown and being replaced today. The friend needed my wife to come down to her house and wait for the repairman to arrive. Then she found out that the repairman had to go get a part from the warehouse and it was 35 miles away. It would take him an hour to return. After the thermostat was repaired, she received a call that her mother needed some help today as well. She was gone most of the day today. So I occupied myself with some movies.

I got paid today and we were planning on taking tomorrow to shop for homeschooling materials, but it happens to be snowing at this current hour and we may have ice and snow in the morning. That would ruin those plans. We may have to wait until next week before we are able to start the schooling.

Again, tomorrow is wednesday night card playing. Yes, Lord of the Rings. I wonder if this will show up here.

This is Eomer

He would be used as a companion in the game fighting your opponents minions. It's quite an interesting game, if you are into that sort of thing. Lots of interaction with your opponent in this game, which is what I like.

That's all from me...I'm Done

Week's End

2005-01-30T23:22:00.000-08:00

Today was a very good day for me. I didn't have much pain, but I have been coughing up alot of junk. You would think that I had an infection, but the stuff I'm coughing up isn't green. It turns green if you start getting ill. My cup of junk that I spit into day after day starts to smell really bad after three days of sitting on my desk. I usually can fill them pretty quickly, but when I don't spit into the cup when I cough junk up, they tend do that.

I watched "Resident Evil: Apocolypse". The beginning and middle were fairly good. Mila Jovovich likes to do these powerful women roles along with blood, guts and firepower. The end was laughable thought when you have a 'boxing match' between Alice and the Nemesis. It didn't work.

Wife wants to start going full steam on her diet now and we start homeschooling the kids tomorrow as well. This should be fun.

Gonna go fix up the meals for the week for my wife. I'm trying to be more consistent with this blog. I will do better.

I'm Done.

Mornings Are Bad

2005-01-29T05:43:00.000-08:00

I am really starting to despise mornings. I wake up with a pounding headache, my neck and shoulders are tied up in knots and my wrists and knuckles swell up, making it painful to grasp anything. I tend to just wait in bed until the pain subsides. So, instead of waking up at 6:30 am every morning, I am getting up at 11:00 or later. It's embarrasing sometimes when friends call and they ask "Did you just wake up? You lazy bastard!". To each his own.

This morning is a little better, I went to bed at midnight and I was able to get up at 6:30. I've had breakfast, taking my meds and I'm now starting to do my neb. I will do my colistin next, then my vest for 30 min., finishing up with Pulmozyme. That will take an hour all together. I'm sure I will take a short nap after this.

I am going out of town for another card game tournament. Yes, Lord of the Rings again. I'm a die hard fan of this card game. It's such a blast to play. I'll have to remember to bring my portable neb and my oxygen just in case. Packing a lunch as well.

My posting has dwindled a little. I've been engrossed in playing Myst III while I do my meds. I usually post at that time. When I beat the game again, I hope to resume posting on a regular basis again.

I'm Done.

Today was Good

2005-01-26T21:58:00.000-08:00

I woke up late this morning with a very bad headache. My doctor says I get headaches because of the lack of oxygen. I must not breathe that heavy at night. My arthritis was killing me and I didn't want to get up at all. After starting my treatments and taking my meds, I started to feel much better. Later, I took a shower and shaved my scruffy looking face for the first time in about a week. I was feeling much better then.

My father came over to play some games, but we went to the card shop before hand. Getting outside was more helpful than I thought it would be. I wish I could have stayed to chat longer, but I had to get back, clean house and cook dinner before more people showed up to play also. We had fun, I play a solo smeagol deck, and it does rather well after I have had some experience with it. I probably need to tweek it a little, but many were suprised. I'm sure most of you reading this will not have a clue at what I am talking about. There are links here to the left that will help if you want to investigate some.

I think the colistin is starting to help already. I took it last night and this morning, and I feel really good, except for my aching back. Time for more pain medication, or just Tylenol.

I'm taking Ambien tonight so I can get some good rest. Hopefully it will help with this pain I'm having.

I'm Done.

Missing You

2005-01-25T21:26:00.000-08:00

Breathe in, Breathe out, Ahhhhh!! I have missed you guys. The past two days have been really rough for me and I haven't had the gumption to post here.

It almost got to the point where I was on my oxygen again if I went anywhere. I walk down the hall and I'm gasping for breath, in need of a neb treatment. I start to cough and nothing moves, what does come up is very thick and sticky. It was wearing on me these past couple of days. Not doing much better today either. It was 80° today and I didn't go outside, I haven't shaved for a week, haven't showered for 3 days and my appetite is down, again.

Today I started my colistin, my inhaled, nebulized antibiotic. It will take me a couple more days to recover, so please forgive if I don't post again until the weekend. Tomorrow will be rough, I'm sure, as people are coming over to play games. This weekend is another tournament as well, but it's in Ft. Worth. Not sure if I should make the pilgrimage out there, it may be detrimental to my health.

I tried to finish some of the stuff on my 'to do' list. My other transplant center is wanting records from my other transplant center so they can review them and make a decision on whether to accept me or not. It's a step in the right direction at least. I just want this done and over with now, I'm getting really tired of coughing all the frickin' time. No blood lately, knock on wood "knock-knock". My long term disability is approved for another year and I got the stupid fraud hold off my check card today. Something about doing things over the internet and going to a resteraunt, spending less than $50 combined at both places, seems to trigger the fraud department of my bank and cause them to put a temporary hold on the card. It's kind of embarrassing when you go buy groceries, or go to breakfast and your card is denied, then your spouse has to cover the bill. Granted it comes from the same account, its just the principle of the situation.

I hope to feel a little better tomorrow, but I doubt it. Rain is coming Thursday night, my arthritis will flare up I'm sure.

This past weekend was busy with special occasions. My wife's birthday was Friday, of course. Saturday was her brother's birthday and Sunday was our 6th wedding anniversary. We went to Olive Garden for lunch, it was then that we decided to home school the children. That was finalized on Monday when we officially withdrew them from school.

Read this, it's another confirmation, among several others, that helped us decide on home schooling for children. It's written by John Tayler Gatto, a school teacher who won Teacher of the Year three times in a row. He has written several books about his experiences and his theories of the school system today.

SIX LESSON TEACHER

Call me Mr. Gatto, please. Twenty-six years ago, having nothing better to do, I tried my hand at schoolteaching. My license certifies me as an instructor of English language and literature, but that isn't what I do at all. What I teach is school, and I win awards doing it.

Teaching means many different things, but six lessons are common to schoolteaching from Harlem to Hollywood. You pay for these lessons in more ways than you can imagine, so you might as well know what they are:

The first lesson I teach is: "Stay in the class where you belong." I don't know who decides that my kids belong there but that's not my business. The children are numbered so that if any get away they can be returned to the right class. Over the years the variety of ways children are numbered has increased dramatically, until it is hard to see the human being under the burden of the numbers each carries. Numbering children is a big and very profitable business, though what the business is designed to accomplish is elusive.

In any case, again, that's not my business. My job is to make the kids like it -- being locked in together, I mean -- or at the minimum, endure it. If things go well, the kids can't imagine themselves anywhere else; they envy and fear the better classes and have contempt for the dumber classes. So the class mostly keeps itself in good marching order. That's the real lesson of any rigged competition like school. You come to know your place.

Nevertheless, in spite of the overall blueprint, I make an effort to urge children to higher levels of test success, promising eventual transfer from the lower-level class as a reward. I insinuate that the day will come when an employer will hire them on the basis of test scores, even though my own experience is that employers are (rightly) indifferent to such things. I never lie outright, but I've come to see that truth and [school]teaching are incompatible.

The lesson of numbered classes is that there is no way out of your class except by magic. Until that happens you must stay where you are put.

The second lesson I teach kids is to turn on and off like a light switch. I demand that they become totally involved in my lessons, jumping up and down in their seats with anticipation, competing vigorously with each other for my favor. But when the bell rings I insist that they drop the work at once and proceed quickly to the next work station. Nothing important is ever finished in my class, nor in any other class I know of.

The lesson of bells is that no work is worth finishing, so why care too deeply about anything? Bells are the secret logic of schooltime; their argument is inexorable; bells destroy past and future, converting every interval into a sameness, as an abstract map makes every living mountain and river the same even though they are not. Bells inoculate each undertaking with indifference.

The third lesson I teach you is to surrender your will to a predestined chain of command. Rights may be granted or withheld, by authority, without appeal. As a schoolteacher I intervene in many personal decisions, issuing a Pass for those I deem legitimate, or initiating a disciplinary confrontation for behavior that threatens my control. My judgments come thick and fast, because individuality is trying constantly to assert itself in my classroom. Individuality is a curse to all systems of classification, a contradiction of class theory.

Here are some common ways it shows up: children sneak away for a private moment in the toilet on the pretext of moving their bowels; they trick me out of a private instant in the hallway on the grounds that they need water. Sometimes free will appears right in front of me in children angry, depressed or exhilarated by things outside my ken. Rights in such things cannot exist for schoolteachers; only privileges, which can be withdrawn, exist.

The fourth lesson I teach is that only I determine what curriculum you will study. (Rather, I enforce decisions transmitted by the people who pay me). This power lets me separate good kids from bad kids instantly. Good kids do the tasks I appoint with a minimum of conflict and a decent show of enthusiasm. Of the millions of things of value to learn, I decide what few we have time for. The choices are mine. Curiosity has no important place in my work, only conformity.

Bad kids fight against this, of course, trying openly or covertly to make decisions for themselves about what they will learn. How can we allow that and survive as schoolteachers? Fortunately there are procedures to break the will of those who resist.

This is another way I teach the lesson of dependency. Good people wait for a teacher to tell them what to do. This is the most important lesson of all, that we must wait for other people, better trained than ourselves, to make the meanings of our lives. It is no exaggeration to say that our entire economy depends upon this lesson being learned. Think of what would fall apart if kids weren't trained in the dependency lesson: The social-service businesses could hardly survive, including the fast-growing counseling industry; commercial entertainment of all sorts, along with television, would wither if people remembered how to make their own fun; the food services, restaurants and prepared-food warehouses would shrink if people returned to making their own meals rather than depending on strangers to cook for them. Much of modern law, medicine, and engineering would go too -- the clothing business as well -- unless a guaranteed supply of helpless people poured out of our schools each year. We've built a way of life that depends on people doing what they are told because they don't know any other way. For God's sake, let's not rock that boat!

In lesson five I teach that your self-respect should depend on an observer's measure of your worth. My kids are constantly evaluated and judged. A monthly report, impressive in its precision, is sent into students' homes to spread approval or to mark exactly -- down to a single percentage point -- how dissatisfied with their children parents should be. Although some people might be surprised how little time or reflection goes into making up these records, the cumulative weight of the objective- seeming documents establishes a profile of defect which compels a child to arrive at a certain decisions about himself and his future based on the casual judgment of strangers.

Self-evaluation -- the staple of every major philosophical system that ever appeared on the planet -- is never a factor in these things. The lesson of report cards, grades, and tests is that children should not trust themselves or their parents, but must rely on the evaluation of certified officials. People need to be told what they are worth.

In lesson six I teach children that they are being watched. I keep each student under constant surveillance and so do my colleagues. There are no private spaces for children; there is no private time. Class change lasts 300 seconds to keep promiscuous fraternization at low levels. Students are encouraged to tattle on each other, even to tattle on their parents. Of course I encourage parents to file their own child's waywardness, too.

I assign "homework" so that this surveillance extends into the household, where students might otherwise use the time to learn something unauthorized, perhaps from a father or mother, or by apprenticing to some wiser person in the neighborhood.

The lesson of constant surveillance is that no one can be trusted, that privacy is not legitimate. Surveillance is an ancient urgency among certain influential thinkers; it was a central prescription set down by Calvin in the Institutes, by Plato in the Republic, by Hobbes, by Comte, by Francis Bacon. All these childless men discovered the same thing: Children must be closely watched if you want to keep a society under central control.

It is the great triumph of schooling that among even the best of my fellow teachers, and among even the best parents, there is only a small number who can imagine a different way to do things. Yet only a very few lifetimes ago things were different in the United States: originality and variety were common currency; our freedom from regimentation made us the miracle of the world; social class boundaries were relatively easy to cross; our citizenry was marvelously confident, inventive, and able to do many things independently, to think for themselves. We were something, all by ourselves, as individuals.

I'm Done.

Another Rough Morning

2005-01-23T07:22:00.000-08:00

This morning was rough for me with my arthritis. My shoulders hurt, my wrists hurt and my fingers hurt. It is difficult posting today and I believe that there is a storm coming. Funny how you can predict the weather almost with your arthritis. I always though my grandparents were crazy, but now I can relate since I have their ailment.

As usual, I woke up coughing with the occasional difficulty breathing in. It either comes up all at once and blocks my airway, or it doesn't come up at all and I cough for an extended period of time. I wear myself out when the junk doesn't move.

Going to finish my lung treatments and then have breakfast. I do not have plans to do anything today, so hopefully I can just lounge around and watch sci/fi movies all day. Yeah, fat chance. The kitchen is clean at least. My responsibility is done, lol.

Thanks to Flirt for making me her blog buddy today. Yes, it was my wife's birthay on Friday, and can you believe that it is our 6th wedding anniversary today? I can't either.

Happy Anniversary my love.

I'm Done.

Birthday Girl

2005-01-21T19:43:00.000-08:00

Today is my wife's birthday. Please take a moment and say happy birthday to the woman who has my heart.

Happy Birthday Baby, I Love You!!!

I'm Done

Complicated

2005-01-20T19:37:00.000-08:00

Today mostly focused on our oldest child at school. It became a huge issue with us in discipline and fair treatment. I just couldn't come up with a good title for this post.

About 11 am, we receive a phone call from our oldest child from school. He is in 5th grade and will be going to middle school next year. Anyway, it seems he was playing flag football in PE today. In the course of the game, he grabbed the flag of another child, then somehow he and the other child got into a scuffle. He is now asked to apologize to the other child and he was calling because he did not feel that he should have to apologize since he did nothing wrong. The other child apologized, but he didn't. This is where things got a little questionable.

Our youngest child has ADHD, he has behavior problems and it has become a major issue at school to the point that he might be attending alternative school. All that asside, he will be put in 'in-school suspension' for having physical contact with another child. Now, the other child that our oldest scuffled with, is not being punished, except for being told to apologize. We found out after talking with the oldest, that this is the same child that harrassed our youngest on the bus to school. This child has also been calling our kids 'retarted' and other names. This child has only been in this school for only 5 months now. Our oldest has been at this school now for four years without any incidents and is known that he is not a trouble maker. The other child, on the other hand, is a known trouble maker and has a reputation, yet neither of these facts are taken into considration at the time of the scuffle. We have also found that our child has a mark on his face from the other hitting him. That is where my wife and I draw the line. In a domestic dispute, when the police are called, they take the story from each person involved and then check for injuries. If someone has an injury and the other does not, the other will be taken away, no if's, and's or but's about it.

Our oldest child now says that he doesn't feel safe. This child lives in the same apartment complex that we do, so he will not be able to avoid this child. "He is everywhere, at home, at school, on the bus." He feels safe in the classroom, but in PE or recess, he feels very unsafe. It's seems to be a bully situation and the school doesn't seem to know how to handle this type of occurence.

They are going to talk to the other children that were present playing the game. They will also talk to the coaches present and what they saw and was explained to them. If they were to suspend both my child and the other one as well, I would feel better about this, but when nothing happens but an apology, I have a problem. Especially when my youngest displays the same kind of behavior, the book is thrown at him and alternative school is threatened.

Oh, and then the statment was made, "If he knows that this child is a trouble maker, why did he take his flag? Why didn't he avoid the other child and go after someone else?" At this point, after talking with the teachers, principal and our child, we found out that the other child was bending down to help another child that had fallen down. Since he was helping another child, he felt that he was out of the game at that time. So, he was an easy target in our child's mind. Why would he be thinking that this child is a troublemaker when he is running around and sees an easy target? So, you want to blame the child for his actions and treat him as an adult that thinks on his feet. I thought that the statement "If he knows that this child is a trouble maker, why did he take his flag" was an ingnorant statement.

Needless to say, this was a very stressful day for both my wife and I. My condition does not bode well with stress and I can start having an asthma attack the more stress I have. Fortunately, that did not happen, but I am tired after all that. We may be overreacting somewhat, but we are thinking about homeschooling our children.

If anyone has any resources or experience with homeschooling, please comment or email me here. Thanks in advance for your help in this matter. It is appreciated.

I'm done

It Just Will Not Come Up

2005-01-19T20:00:00.000-08:00

Today was difficult in that when I was coughing, I could barely get anything up. It's frustrating when you have a tickle in the back of your throat and you cannot cough up anything. It can be dangerous too as phlem can get stuck in my throat preventing me from breathing in. Sometimes this is due to not drinking enough water and getting dehydrated. Other times it's because the air is dry and I get dried up inside my lungs.

I woke up an hour early today trying to cough up some pesky stuff. I did a neb treatment, but it only helped a little bit. I was still struggling to move the junk from my lungs. Making breakfast this morning had me breathing hard to the point that I was bent over the kitchen sink coughing til I was red in the face. I almost vomited too. After a coughing fit like this, I am exhausted that I can fall asleep for two hours easily. My body is totally worn out from the exertion and it feels good to finally breath at my normal pace again.

I had this happen again to me during lunch as well. I was hungry and decided that I would cook myself some boiled eggs. The steam from the boiling water had me coughing again and leaned over the kitchen sink. I ate my lunch and took a nap until 4:30 pm. Then I receive a call from my friends, they are coming over for Wednesday night. Wow, It's 6:15 now, I had been sleeping for a while.

Playing games was fun as always. I'm always happy to have company at my house. I love to entertain, I just wish I had the stamina and the financial resources to do it more often.

I'm doing my evening treatments again. I find that I have more time at night to post than I do any other time. Still having problems getting junk up, but I think a hot bath will help with that.

You know that I will post if something happens. It's just what I do.

I'm Done.

Groceries in the Cold

2005-01-18T21:04:00.000-08:00

Interesting how children think these days. Both of our kids decided that they were either too tired to go to school or they had an upset stomach because they were too cold. Well, wife and I decided on a plan to deter them from doing this again. If they were not feeling well enought to go to school, then they will stay in their rooms all day without TV, Video games or music. They can read or play with legos and army men, but other than that, they are to stay in their rooms and rest. It was fine until it was time to go grocery shopping.

Our oldest accused us of torturing him by taking him grocery shopping. It was just too much work for him and he didn't understand why we would do this to him. It was rather funny listening to him argue his point.

I did very well today as far as my health went. I was fine until we were about to leave the grocery store. I had to stop in the middle of the store, lean against the isle meat coolers and do a lung treatment with my portable neb. I find it interesting watching the people react to my public display of medication administration. Some look at me funny, others see me from a distance and then totally ignore me when they approach. One woman even pushed me out of her way because I was blocking the cornish hens. People are down right rude these days. I coughed in her general direction and freaked her out. I guess she thought I was contaigous, HA, serves her right.

I want to go to a t-shirt store and have "Cystic Fibrosis Patient" on the front and back of the shirt. Maybe then they would understand what I was going through. People see me park in the handicapped parking and give me evil looks, mostly because of my
age I assume. Some say I could easily pass for 22 still, and there are very few 22 yr old disabled people who don't have a broken bone, on crutches or in a wheelchair. Close minded people just irritate me to the core. Makes me want to scream and strangle them
into submission until they get it through their thick skulls that there are people out there that are less fortunate living within the united states. Some even that live right next door to you.

A counselor once told me that I had an above average IQ. Now if you could chart the IQ's of everyone in the US, you would find a scale that looks simular to a mountain. Very few low IQ's and very few high IQ's, but the population peaks around 100. So, if you have an IQ score greater than 100, you are smarter than half the people in the US. Scary to think that there are mass amounts of stupid people running amuk in the world today. What to do, what to do.

I wrote a short fictional story called 'Salvation'. I will submit it to a post all alone. I adjusted the posting time so that it will appear after this post. I hope you enjoy it. I submitted it to the Vacant Funhouse that is going live in February. It's a horror, fiction and poetry site that will pay you for your work submitted if approved for publication. Who knows, maybe a famous short story in the works, but I doubt it. I will wait to see everyones reaction before I jump on some bandwagon and go off half-cocked.

Well, I thought I would have some free time today, but since the kids did not go to school today, that did not happen. Maybe tomorrow. You see now where my procrastination comes from? It's all these delays that happen in my life. Just seems to happen that way.

I'm Done.

Salvation

2005-01-18T09:34:00.000-08:00

     Dropping the knife down on the ground, landing in a pool of curdled blood, David takes a step back to view his work. “I’m done,” he says in a crazed voice. He takes a sigh of relief knowing that his task is done.

     David thinks back to when his journey began. A time of turmoil and joy at the same time. Five years ago today, he met his current wife Kyra. David, a plastic surgeon, had decided to go back to church and find the Lord again. Little did he know that his life would be turned upside down within a few weeks.

     Kyra, an unemployed homemaker, was joining a friend to a church that she had only heard of in the past, a place where denomination did not define your faith. She had no idea that the man of her dreams would be attending the same day she was.

     David saw Kyra from across the room and he walked over to meet her. She was the most magnificent woman he had ever seen. He introduced himself, and during the service they talked and talked for hours it seemed, until service was over. They went to lunch together and their relationship blossomed into a love affair that would last a lifetime. They would be married only six months later, which their families both tho ught was too fast.

     Kyra had two children from a previous marriage. Their biological father, Jake, was a drunk and was rarely employed. About a month into David and Kyra’s marriage, Jake started phoning the house in a drunken stumper, “I want to see my kids,” he would say. “I want to see my kids,” over and over again for hours on end. It would start again the next evening, “I want to see my kids,” he would say. They called the police for harassment with no help. The police said that since he had not threatened them or the kids or caused any physical harm, their hands were tied.

     David came home from work late one evening to find Kyra huddled by the front door, barely anything on and shivering in fear of something. She stared blankly at the wall as David tried to get her to come out of her trance with no luck. A quick run of the house, David discovers that the kids are gone. He called 911 and she was rushed to the hospital and an APB was put out on Jake.

     Kyra admitted to being raped repeatedly with a blunt object and by Jake. A rape kit was used and semen, later to be found as Jake’s, was recovered. David knew where Jake would be, he always goes there whenever he screws up. The police wouldn’t find him or they would take forever. David had to take care of this himself. He went home and grabbed his bag he took to work everyday.

     Jake had a lake house by the river. Not everyone knew that there was an underground bunker that he used at times to escape from the authorities. He wasn’t going to escape this time though.

     David drove towards that river and parked just off the road near the entrance to the lake house. The entrance to the bunker was underneath the boat dock at the edge of the river. There was just enough room there to fit a cement frame and a six foot cast iron door. Kyra had told David about this secret hideaway many times before. He had to be quiet so Jake wouldn’t hear him crawl inside. The locking mechanism was rusty and was recently sprayed with oil to lube the gears. It was just enough to keep the lock from making noise, but the door was another monster. A loud ear-piercing squeal came from the door, as it swung open. He entered the passage into a dark tunnel. It smelled of rancid mild and a distinct smell of sulfur, remembering that Jake made homemade gunpowder.

     He made his way down the corridor towards a faint light that illuminated another door. This door was partly open and there was a brighter light coming from the other side. Peering inside, David discovered Jake taking a nap on an old run down brown recliner. It lay in the middle of the main room. The walls were made of cement and were bare of any decorations or paint. A small table stood beside the recliner with newspapers strewn atop. To the left was a passage into what looked like a makeshift bedroom. The end of a bed could be seen just beyond the walls of the passageway. To the right was a small kitchen with a double-sink, refrigerator and microwave. On the floor was something he did not want to believe.

     Making his way past Jake snoring on the recliner, David snuck into the kitchen where his eyes deceived him. He stared at the floor for a lifetime it seemed. His breath got heavy, he clenched his fists and his right hand brought the black bag into his line of vision.

     Reaching into his black bag, David pulled out a scalpel with a newly replaced blade. The light from the kitchen reflected off the blade into his eyes and he decided on a plan of action. He cut the cord from the back of the fridge and unplugged it from the wall. He would use this to bind the hands of a monster in the other room. Stepping behind the recliner, reaching for each hand he quickly grabbed both at the same time using the cord to securely bind his hands together.

     David stepped around into Jake’s eyesight, raised the scalpel in front of his face and smiled. “You sick fuck. Why did you have to slice the throats of your own kids? I never did understand you, but I wont have to worry about that anymore. I’m here to end you.” Jake kicked his right leg up towards the hand holding the knife, but David was anticipating such a move. He grabbed the leg by the ankle and with one swift slice; he cut the tendons behind the knee, immobilizing the leg. David grabbed the other leg, but Jake struggled against him. Like a wrestling move, David turned and straddled Jake’s leg and slowly cut the flesh behind the knee. Jake screamed as blood dripped onto the floor in a pool of red. Jake was shrieking like a banshee, but David ignored the howls and took freedom in his work knowing that his victim was helpless now.

     David took the next hour slowly cutting the skin from Jakes face and upper torso in small one-inch pieces. He wanted to inflict as much pain as he could, showing Jake just how much pain he inflicted on David’s family. Jake had a very strong pain threshold and kept screaming for two hours. After finally passing out from the pain, David took one final stab into the lower abdomen, quickly bringing his wrist up to the mid-chest line. Jake entrails poured out onto his lap and onto the floor.

     David stood up and takes a step back to view his work. “I’m done,” he says, dropping the knife onto the ground in a pool of curdled blood. He turned toward the kitchen and walked to the bodies of his children. They lay side-by-side, throats cut from ear to ear and tongues pulled out through the neck onto the chest like a necktie. David knelt in front of the kids and raised his hands in prayer. He then lay in-between the kids and cried for their salvation.

Riding the Waves

2005-01-17T20:46:00.000-08:00

My my, a scary morning with the blood stuff. Freaked my wife out a bit. We thought about calling the doctor or going to the ER, but we decided to wait 30 minutes like we usually do before deciding to take that step. As before, it calmed down and I was doing better. I was able to clean the kitchen and gather up the trash from the house. The kids took it out to the dumpster for me, it was just a bit cold for me today. I didn't want to risk anything after this morning.

My arthritis wasn't a problem this morning I'm happy to say. I played a little X-Box, Splinter Cell: Pandora Tomorrow to be exact. That game just rocks. Third person shooter but it deals with stealth movement. Another one of my favorites is Prince of Persia: Sands of Time. I have yet to beat the game, but I'm getting there. Halo 2 was awesome, but the ending was a disappointment. It doesn't give you a feeling of accomplishment. It's unfinished business to me, but I guarantee I will be first inline again when Halo 3 comes out. Release day for Halo 2, I went to the mall at 10 pm and waited til midnight for the release. I was actually moved to the front of the line because I played some PC games at another store while I waited. The security people were nice enough to remeber me and that I arrived very early.

I watched 'Medium' tonight on NBC. What a show. It's like CSI when it debuted on CBS. The show centers on a female psychic that helps the police solve crimes. She can speak with the dead and she has visions at night or when she is in the presence of crime victims. Every episode has her seeing different visions at different times that keeps you guessing til the end. Very well directed and acted in my opinion.

I also took the time to watch 'X2-XMen United'. A comic book film that was perfectly cast, directed and produced. The first 10 minutes are a display of visual effects that will leave you floored. Kudos to Bryan Singer for convincingly bringing Nightcrawler to the big screen. Well Done.

Tomorrow is the time to go grocery shopping. Kids go back to school and banks are open as well. I hope to have time to wathc 'Eye See You' with Sylvester Stallone tomorrow too. Haven't seen that movie and I remember that I wanted to when it was advertised.

See everyone later...I'm Done.

I See Red

2005-01-17T08:07:00.000-08:00

Started my treatments this morning and was doing well. I started on my Pulmozyme and started coughing up junk and I noticed a dark color. I turned on the light and the cup that I spit into was all red. I was coughing up blood. This happens at times when there is a clot in my lungs or a blood vessel blows. I cough up blood for about 30 minutes and then I will be fine. The bleeding is starting to subside now, but I thought it would be a good time to document this for myself. Sorry if this offends anyone.

I'm Done.

A Day of Rest

2005-01-16T20:41:00.000-08:00

Last day of the patch study today!!! Wife and I both received our $90 checks today. Unfortunately, the bank is closed today and tomorrow for Martin Luther King Jr.'s Birthday. Kids have no school tomorrow either and they are very excited.

I woke up this morning coughing violently and in serious pain from my arthritis. I couldn't move my shoulders or my left arm and my neck was very stiff too. I had to take two lung treatments this morning to recover from it. I do not like mornings like this at all.

After the patch, we went to the pharmacy to pick up some prescriptions. CVS has this great deal with their Prescription Card offer. Every two prescription that you purchase from CVS, you will receive one dollar in Extra Care $$. Extra Care $$ can be used in any CVS store to use towards any purchase. I have 22 prescriptions myself which will turn into $110 at the end of the year. Can you say extra X-mas money to spend on cards and stuffed animals.

I have some family members that are asking about my current status as a CF patient. They also want to know how well I can get around and how often I cough and how much I cough up. Here are a few details of my life as it stands right now.

I am currently at 146 lbs and 18% lung capacity. When I say 18%, I am referring to a measurment that is on a breathing test, specifically the FEV1 result. When I go to the doctor, I take a pulmonary functions test (PFT) that measures the capacity of my lungs. There are several results from this test to look at. Here is the result of my PFT dated 12/28/04.

FVC 1.51 Liters 27%

FEV1 0.78 Liters 18%

FEF 25-75% 0.27 Liters 6%

FEF 50% 0.33 Liters 5%

FEF 75% 0.12 Liters 4%

PEF 2.76 Liters 28%

I do not know the meaning of some of these results, but the one that the doctor looks at is the FEV1.

The FVC is the Forced Vital Capacity; after the patient has taken in the deepest possible breath, this is the volume of air which can be forcibly and maximally exhaled out of the lungs until no more can be expired.

The FEV1 is the Forced Expiratory Volume in One Second; this is the volume of air which can be forcibly exhaled from the lungs in the first second of a forced expiratory manuever.

Since the lungs to not expire the entire capacity of air inhaled, the best measurement of lung capacity is the FEV1, which here it is 18%. November of 2003 it was at 26%, October 2002 it was 28%. Way back in November 1997 my FEV1 was measured at a high of 50%. That was the year I met my wife at church.

I cough just about every 5-10 minutes. People tend to think I have allergies or have caught a cold. I can fill a 5 oz. cup with phlem in a 12 hour period on a regular basis. This puts a strain on my abdomen and back and I have been known to pull muscles or have an upset stomach due to the coughing. Everyone has good days and bad days. On my good days, I can walk 1-2 miles in 2-3 hours. I will have to stop and catch my breath at times, or even have to use my portable nebulizer to open my airways. On bad days, I will either not be able to get out of bed or I will have my oxygen on all day. I will walk at a snails pace, looking like an old man crossing the road. I am able to have sex, but I have to be having a good day. It will wear me out to a point of coughing 'til I vomit, or I have to do a neb treatment immediately. Very rarely will I not have to do a neb treatment afterwards. It will then be 3-4 weeks before I will have sex again. My wife says that it is worth the wait.

My diet is a 5000 calorie diet. No that is not a misprint. Five Thousand Calories. It is quite hard and expensive to take in that many calories in a day. I drink two Ensure Plus cans, three times a day. That alone is 2100 calories. I eat alot of bread and pasta. I crave fish, chicken, salad and milk, but I do not like cake, cookies or chocolate candy bars. I drink too much Pepsi and Coke, but I munch on potato chips and pretzels alot along with popcorn with my kids. Its hard to feed 2 kids and myself on $500 a month for food. I do not know how my wife does it, I would probably go insane trying to understand how.

I said befor that I take 22 prescriptions. Here is a list of what I take:

PREDNISONE steroid

PLAQUENIL for pain and swelling of joints

PROTONIX for acid reflux

MOBIC for arthritis

TRAMADOL HCL for arthritis

AMBIEN to help me sleep

ZITHROMAX antibiotic that helps lung functions in CF patients

MEPHYTON Vitamin K

DRISDOL Vitamin D

HCTZ to prevent water retention caused by the steroid

SINGULAIR for asthma

BECONASE for a runny nose

VITAMIN E 400IU (two twice/day)

CALCIUM CARBONATE 1.25GM (two once/day)

FOSAMAX to prevent bone loss due to osteoperosis

BETA-CAROTENE body turns it into Vit. A

ADEKS Combo Vitamin containing Vit. A,D,E and K

COLISTIMETHATE inhaled antibiotic

ALBUTEROL my neb treatment to open the airways and loosen phlem from the walls of the lungs.

MIRALAX for regularity during constipation

ULTRASE MT20 enzymes to help digest food

PULMOZYME breaks down the dna of mucus, making it easier to cough up.

CELEXA anti- depressant

CF effects all of the glands in the body. Mainly it effects the mucus membranes in the lungs, the sweat glands in the skin and the pancreas. The pancreas does not secrete enough enzymes to digest my food properly. Because of that, I must take Ultrase MT-20 with my food to help digest it. I take 5 pills with meals and 3 pill with snacks.

I'm not sure what else to say about my daily life, comment if you would like to know more or have suggestions to help inform my family. Thanks in advance...I'm Done.

Tournament Day - 11 Players

2005-01-15T20:25:00.000-08:00

I didn't get much rest last night. I tossed and turned all night long. I was coughing and my arthritis was bothering me as well. I had to get up twice last night and do extra lung treatments to help with the cough. I finally was able to get to sleep around 5 AM. I got up around 10 or so. My arthritis was still bothering me then too.

My dad was going to the tournament today after a meeting in Ft. Worth, since no one showed up, he called and said he would give me a ride there. He was able to arrive early enough to take my wife and I to the patch study. I'm always happy to travel with my father, I can usually stay longer and play a few more games after the tournament as well.

My chest was slightly tight, but it eased up as the day went along. I didn't lose my breath or have a bad coughing fit today. I was event able to keep a good pace around the building when I stopped to get copies at the copy store.

I was expecting 16 people to show, but my brother in law fell ill and wasn't able to attend. I always ask that people stay home it they are coming down with something. My immune system is not up to par living with CF and I can catch cold very easily. Flu and pnuemonia are not fun to deal with in the hospital. Long days and painful nights.

11 people showed up, including myself, and we had a great time. The players from Ft. Worth won the bounty, as they always seem to. I need to build a good deck and waste these suckers. Playing for fun is great and all, but I'm tired of seeing the same people win all the time. Next time will be different. I will not leave without a win again.

Today was a good day for me, again. I was a little afraid that I might have an attack, but I was able to slow down and steady my breathing to keep myself from doing just that.

Tomorrow is the last day of the patch. $180 coming our way. Otherwise, I think it is a day of rest tomorrow. Maybe a little house cleaning, but mostly rest. I think I'm ready for that.

I'm Done.

Cool & Humid

2005-01-14T21:52:00.000-08:00

This morning found me coughing alot more and out of breath. Doing my treatments aleviated this a little, but the humidity made it more difficult to breath too.

I had an appointment with a focus group today about cell phones. I looked at cell phone brocures for Sprint and T-Mobile comparing how well they were designed and eye-catching. It was an interesting hour and a half, and I received $100 for my time. That makes almost $150 I made this week.

Friend came over tonight for pizza and a movie. We rented 'Anchorman' with Will Ferral. One of those "stupid funny" movies, but not uncomfortable funny like 'Meet the Parents'. A little dull at times, but it was hilarious at others. I would give it a 3 out of 5. A little over the top, but that what is expected in this movie. It just missed its mark in some scenes.

I was out of breath going to the movie store tonight and felt like I was having an asthma attack after sitting down to watch it. An upset stomach was bothering me all evening as well that had me on the porceline throne for an extended time. Not a pretty site to see.

I'm doing better now and hope to get a good nights rest. I hope that I am feeling well enough for the card game tournament tomorrow.

We'll find out tomorrow...I'm Done.

Not Good, But Not Bad

2005-01-13T21:25:00.000-08:00

I woke up with my chest hurting. It was a little difficult to breath with the pain, but I managed to do my treatments this morning. The pain meds took a while to kick in and I continued to cough all morning. I found myself coughing, not able to breath in because the phlem I was coughing up, wasn't coming up all the way and it started to block my airway. It's discomboberating at times and is not pleasant to watch either. There is little that a person can do to help me other than help me get to my nebulizer so I can start another treatment. It's a waiting game, and I feel for my wife to have to go through it.

The kids came back from the busstop this morning because it was too cold, they said. I put gloves, hats and zipped up their coats to keep them warm. Why they can't do it themselves is beyond me. They were trying to get us up and drive them to school. That is nearly impossible for us since mornings are the worst for us. We think it might also be the reason the youngest had a bad day today. Yes, another one, but no calls from the school this time.

Tomorrow I go to a focus group for men who do not own a cell phone. I sit for 1 1/2 hours, giving my opinion about this subject, and then I receive $100 afterwards. Woo-Hoo!!! Free Money!!! I'm looking forward to spending it...lol.

I also am looking forward to a Lord of the Rings Card Game tournament that I am running on Saturday. I have 16 players confirmed for this event. I'm so glad that turnout for these events is rising again. I have so much fun with them. It's also a great way to meet new people and make new friends.

I recovered pretty well today, I slept for four hours though. We walked the mall again today, but only for 10 minutes or so. We went there to do more surveys that pay $1 - $5 a piece. It's not much, but sometimes it can pay for lunch at the mall as well.

Dishes are done, laundry is done and the house is still clean. I always feel better with a clean house. A dirty house makes me feel worse and can even put me into a depression even. Like is too overwhelming to start cleaning this mess that looks huge. It usually only takes one to two hours to do, but it can be enough to keep me from cleaning.

Arthritis is beginning to flare up in my fingers and wrists again. Rain is coming I think or something that is rising the air pressure. Weather man says there is a cold front coming from Canada, but it will not get here until next week. I can feel those fronts too, even a week in advance. Funny how the human body works.

I'm finishing up here, so I will stop here. Later all...I'm Done.

Day of the Cough

2005-01-12T21:40:00.000-08:00

I had it a little rough today. I was coughing an awful lot today and had trouble breathing at one time.

The youngest had to be picked up from school today because he was having trouble urinating and he said it hurt too. We took him to the doctor and we came to a roadblock, he didn't want the doctor to look at his privates under any circumstances. He didn't want to vacate in a cup either, so the doctor was unable to help. After leaving, when it came apparent that he might have to go back to school, that's when our child decided it was time to go in the cup. We stopped at the local McDonalds, he did his business and we headed back to the doctor to drop it off. No infection, but the doctor prescribed an antibiotic just in case since the child was in still in pain after urinating. He was a little concerned about that.

It was very windy today and it blew the car out of our lane from time to time. I hate it when that happens. We went to the mall again, to check to see if the survey place had anything. One that paid $8 and one that paid $7. Wife and I took both surveys and left $30 richer. It's what we needed to cover our negative balance in the checking account.

After we arrived home, spot cleaning had to commence. People were coming over to play card games again. This is where I had the most problems. For some reason, I think that I can move quickly in the kitchen and I don't realize that I am short of breath until all the dishes are done. Then I collapse on the couch to catch my breath as I cough up a lung. I have a hard time knowing when I'm pushing myself, when I'm concentrating hard on a project, like the dishes.

It's Wednesday, so its's $0.25 hot dogs at Wienerschnitzel. We were able to feed 5 people on $3.00, what a bargain. I played 5 games tonight and everybody had a blast. I'll be happy if we can start the Wed. Night fun play again. It kind of fizzled out just before the holidays. It was mid-October when I had the last get together. It was good to see their faces again.

Doing evening treatments now and I'm not looking forward to 38° F tomorrow morning.

Til then...I'm Done.

In The Doghouse

2005-01-11T20:52:00.000-08:00

I made a major goof this morning. I didn't go with my wife to here new study. She was very upset that I didn't go after telling me that she was scared and needed me, yesterday. We were both really tired this morning and she said "If you don't want to go, you don't have to." Well, I chose to stay. BIG MISTAKE GUYS. These statements are tests to show how much we are supporting our spouses and whether or not we think of them...at all. I learned a big lesson today and she let me know about it too. ALL DAY LONG TOO.

We got alot done today. Faxed off the information to the transplant center, mailed the paperwork to renew my insurance ( I have to renew every 6 months now), and I faxed in my medicare premium change to my insurance premium reimbursement program. Went to the mall and walked all the way around too. Took me an hour, but I did it. Found out that it is one mile to walk around the complete mall. I did very well. I had to stop a few times to catch my breath and I was doing some productive coughing (getting phlem up that is) while I went around. We window shopped all the way around. Always fun.

NYPD Blue is about to end its run. I'm so sad. I've gotten really hooked the last three years and now its coming to an end. Ryan won The Biggest Loser and on The Amazing Race, they have yet to get rid of the Jonathan/Victoria team. They are the most dysfunctional couple I have seen to date. I really hope that Victoria gets some real self confidence with this game and leaves Jonathan. He's a control freak and a selfish, concieted ass. Next episode Victoria hurts herself and other team members scream at him to help her. He needs a good (Southpark-Cartman voice) 'kick in the nuts'.

I'm a reality TV addict that is picky. I like Survivor, dislike Temptation Island. Like Amazing Race, dislike The Apprentice. I like Trading Spouses, I dislike WifeSwap. I like Fear Factor, dislike The Surreal Life. I like The Swan, but I dislike The Bachelor/Bachelorette.

What are your favorite reality TV shows? Or is reality TV not interest you? Leave a comment, Let me know.

I'm Done.

Monday, Monday

2005-01-10T21:14:00.000-08:00

Days like these need to keep coming. I have been doing wonderfully well these past few days and I feel great. Normal coughing throughout the day, but other than that, it was a great day.

A warm 70° F today, sunny and windy. I didn't need my oxygen and I didn't have any coughing fits either. Played some more cards today, but we were unable to make it to the ponies today. Wife said that we had all week to do that. Need to get this faxing done. I am such a procrastinator it's terrible. Sometimes I wish I could get the motivation to do everything on my 'to do' list, but that's what makes me, 'me'.

Wife has another study to go to tomorrow so I will be getting up early. I'm not looking forward to that. She says I have to go with and it could take up to 3 hours. I'm taking my book!! I will probably just fall asleep and have a nice long nap in the lobby.

Life is great, isn't it? I'm Done.

A Great Way to End the Weekend

2005-01-09T19:21:00.000-08:00

Wow, I haven't felt this good in a long time. I wasn't in pain from my arthritis and my breathing was full and steady. After the patch study, my wife and I drove to a friends house to drop off a backpack that I was holding for a couple of months. He wasn't home, so we went to the mall and walked around a bit, stopped by Taco Bell for a bite to eat and came home to clean house.

We got all the christmas decorations put away, boys rooms cleaned, the kitchen cleaned and a box of paperwork sorted and filed away. It feels good to have a clean house and everyone on a schedule. The boys are ready for school tomorrow and me and my wife plan to play the ponies again.

I might have an idea to raise money for my transplant, because medicare only covers so much and I have to pay for the rest. It seems that there is a kid who was diagnosed in May 2003 with a grapefruit-sized malignant tumor called a rhabdomyosarcoma. They named the tumor "Frankenstien" and started selling bumper stickers that say "Frank Must Die!!". The highest bid, after 61 bids, so far is over $9,000. Other Ebayers have gone and posted items with the intention of sending all the proceeds directly to this kid. I really hope that these are not scam artists trying to profit off this poor soul.

Well, I hope tomorrow will be as good as today was. Til then...I'm Done.

Template Change

2005-01-09T16:30:00.000-08:00

Hey, what do you think of my new template with Gollum from Lord of the Rings? Post a comment and let me know, and please don't forget to rate my blog too.

Thanks in advance

A little rough

2005-01-08T22:52:00.000-08:00

Woke up again with arthritis in my shoulders, knees, ( and toes...lol) and elbows. My neck was stiff as well and I was getting a little tight in the chest.

I wore my oxygen today going to the patch study. I haven't needed it for a while now. It's usually when I walk the malls and its been humid outside that I typically need it. My chest was getting tight as I walked around the house so I decided it was best that I wore it. Good decision too.

We decided to take the youngest out for a birthday dinner at Denny's. Alot of smokers there today, and I could smell the smoke and feel it in my breathing. I'm glad I had my oxygen. I would have had a bad coughing fit if I didn't. Dinner turned out well and we tried to make it to the "ponies" today; aka. the Derby Owners Club. We had a late start and it was getting pretty late by the time we made it to the mall, it was packed. People returning items and spending their x-mas money I guess.

Friends came over again tonight to play a few card games. They had a bad day at work so they blew off some steam. I think it cheered them up a bit.

Well, I'm Done.

More of the same

2005-01-07T21:19:00.000-08:00

Arthritis has kicked in again. I woke up with sore shoulders and I could barely lift my arms above my head to put on a shirt. I slept in this morning after my treatments, getting up at eleven am.

Did the patch study, then drove around town trying to look for a place to eat. Nothing seemed to jump out and say, "I'm what you are looking for". My wife and I decided to go to Dave & Busters for lunch. It's a resteraunt/bar/video arcade that has accomodations for corporate meetings and company parties. I play a game called 'Derby Owners Club' and it's a big hit in Asia. My wife has never played so we bred her a horse today. "Little Babe" she calles her. Yep, she has a female, and I have a male horse. We can have our own virtual children I guess.

No calls from the school, both kids aced their spelling tests. We are so proud. I was able to do the dishes today without a coughing fit. I feel pretty good tonight, I hope it will last through the weekend.

Sorry its a short post, just not much happening. Nothing planned for this weekend. I may wait til monday to post again, unless something happens worth blogging about. Ha, like this is something to blog about...lol. Oh well.

Til next time...I'm Done.

A Good Day

2005-01-06T22:23:00.000-08:00

Very cold outside today. Freezing temperatures this morning. Got up early today after receiving yet another call from the school about youngest having an upset stomach. Evidently he did not have breakfast after taking his medication this morning before catching the bus to school. He was feeling better around lunchtime. More talk about alternative school. Wife and I decided to check out the alternative school.

Had a little coughing fit after getting into the car for the trip this morning. I did rather well though. We took a short tour of the school and an enlightening conversation with the head of discipline in the school. They provide the tools and study habits for the student to go back to their home school. We thought our youngest would be in alternative school for the rest of the year. Glad to hear that, it made us feel more at ease about the idea of alternative school and had us almost to the point where we wanted him to enroll tomorrow.

We went to Denny's for lunch, did the patch study again. Today is day 3 for the patch study. The tape they use for the patches is a little irritating. Headed for the Goodwill store to look find more pants for the oldest. We found a vacuum cleaner for $20. Called the people we knew that needed one, but they were not interested. We have one already too, but it was a great deal. I was doing very well, I took it slow while I walked everywhere I went. Didn't have any breathing problems anywhere today. Checked out a Science Fair Project store since the kids have science fair projects due at the end of this month. Another very interesting store, had alot of ideas for projects. They had the old Head-Bobbing TopHat Bird from the 80's. Brought back alot of memories of the state fair.

A friend stopped by today to play some LOTR CCG. We had some fun with that. The oldest played a game of Magic TCG then he had to go. Work was calling him early tomorrow. Looks like Wednesday Night Fun Play might start up again. Every Wednesday night I used to have 6-10 people come over to play card games for a few hours. It was really great and we had alot of fun. I'll be happy for it to start up again.

Homework, dinner and book reading all were done and finished by 7:30 tonight. That is a record in our books. Someone alert the press!!!

I didn't fax the paperwork today, focused on the alternative school. Will try again tomorrow. Yes, I'm a procrastinator. Does it show? I thought so.

Maybe I'll be able to handle sex tonight as well. Who knows.

I'm Done

After a quick bath...

2005-01-06T01:22:00.000-08:00

I took a hot bath after posting today. I needed to do an abuterol treatment afterwards. My chest was tight and my breathing was heavy. Maybe because of all the steam. Wife calls me 'Lobster Boy' after I come out of a hot bath. Mostly because my skin is beet red when I step out. I love a hot bath, sometimes with bubbles. Great way to relax.

Off to bed...I'm Done

Blow-Up

2005-01-05T22:58:00.000-08:00

Today started good, and then it got BAD! Kids off to school at 7 am and time to do my morning treatments. Albuterol, Pulmozyme and 30min of vest. Take my meds and then a short nap before we have to leave for the patch study. Then I get the phone call from school...our youngest is refusing to do his schoolwork. Teacher then proceeds to tell me that if his behavior does not improve within the next week, it will be recommended that he be placed in an alternative school. This is only after two days of school after X-mas break. My son has ADHD and cannot be expected to have 100% compliance within a week after break. She relayed a message to my son that the X-Box will be removed if the behavior continues. His day improved.

Getting ready for the patch study at noon, I started breathing heavy and had a small coughing fit. It took me close to 5 minutes to catch my breath. I thought today was going to be a painful day for my arthritis since it decided to fall 20 degrees to a brisk 50° F. A little touch and go afterwards, did the patch then headed for the mall for lunch.

The food court changed. Arby's is no longer at the mall, which I'm guessing my undecisive wife was hoping for since we decided to go to the mexican resteraunt instead. It was quite a walk going from one end of the mall to the other to get to the resteraunt. I did pretty well too, walked steady yet slow. Kept my breathing slow and focused on not going to fast or holding my breath. After lunch, we walked back to the car and I had to rest just before the exit door because I got out of breath. Leaned up against the wall for 3 minutes and proceeded outside again to the car. Off to the dollar store. We browsed a bit, I held on to the shopping cart as we walked. It helped alot, no need to catch my breath this time. Picked up mother in law again so she could go to the store to get a few things since she wasn't able to yesterday.

The kids are home by now, they take the bus home and the oldest has a key. We get home and its time to talk to the younger boy about his behavior. That is when all hell breaks loose.

My wife and I's major difference is punishment for the children. She thinks I'm too strict, and I think she is too lax. We both admit our faults, but we have problems coming to a happy medium. If you have never been around a child who has ADHD and ODD (Oppositional Defiant Disorder), then you are very blessed. Our son said that he does not want to listen to his teacher or do any more schoolwork and he doesn't care about the consequences. He wants to go to the alternative school, he dislikes his current school and all the children in his classroom. I put my foot down and wife got in my face. Let the blow-up commence.

Kabooom!!!

After the dust settled, dinner is done, homework is done, kids are in bed and I'm here blogging away. We love each other too much to let this destroy our marriage. We can only hope that tomorrow is better.

I hope to fax my information to the new transplant center tomorrow so they can evaluate my records and see if I can be worked up for transplant.. Hope the ball gets rolling soon on that subject.

Til next time...I'm Done.

Feeling Better

2005-01-04T23:19:00.000-08:00

I never did get to sleep. Suprisingly enough, I was awake all day til about 5pm today. I got out a little too.

My mother in law needed some help finishing her errands from yesterday. She wasn't up to grocery shopping though, neither was I really. I drove my wife and I, running around with my mother in law going to the post office and the city to pay her water bill.

Afterwards, I picked up the Rx's that I needed. They all came in except two, but they can wait a day or two longer. I got what I needed the most...Pain Meds. Ah, the releif of pain in my hands and shoulders.

I didn't have to rely on my neb today, which is good. The kids went to school at 7 this morning and I was needing my oxygen, but that was about it. I stayed on the o2 for about 45 min. then I layed down for a short nap until time for the patch study.

My hair was cut today and it looks dandy! My head is so light now and I'm not sweating above the ears and on the back of my neck.

A friend suprised me today and showed up to play card games. Lord of the Rings card game. It's an interesting game that is fun to play with lots of friends. If you are unfamiliar with it, visit www.decipher.com for more info on the LOTR CCG.

We played 3 games in all and he basically ripped me a new one. He's coming over tommorrow possibly to watch Forbidden Planet. He hasn't seen this classic sci-fi flick yet. I hope he enjoys it, it was a gift for him this year.

Not alot going on right now. Doing my evening treatments then I'm off to bed. I doing alot better today and I don't feel the need to concentrate on my breathing through the night tonight. I had a short nap after the kids left for school and a 1 hour nap at 5 tonight. I'm ready to hit the pillows.

Coughed up about 3.5 oz of phlem yesterday. That's alot for me. I sometimes wonder how I can fill a 5 oz. cup on one day and then barely reach 1 oz on another. I know its gross, but I tend to swallow alot and don't always have opportunity to spit or spit into a cup even. *cough* *cough* *sniff* *snort* *sniff-sniff* *cough* ......*gulp* Yeah, its nasty. To each his own.

I'm done.

Introduction

2005-01-04T07:35:00.000-08:00

I'm a 35 yr old male living with a dreadful condition called Cystic Fibrosis. I won't go into explaining what it is, as I have done so for so long. I'm waiting for a lung transplant and have been waiting for 4 long years. It's been hell.

I'm married with two kids and love all of them dearly. My wife has MS and struggles at time, but she is one go-getter and has put a terrific fight. Always going strong, you go girl.

My last visit to the doctor found me at 146lbs, 5' 11" and 18% lung capacity. I do lung treatments 2-3 times a day, more if I'm not doing well, and vest treatments twice daily.

I've got quite a regimen of medications which I might post later. For now I just want to get the formalities out of the way.

I love movies, Lord of the Rings is one of my favorites. I own all the extended editions which I have seen at least 5 times a piece. Still working on commentaries for all three. I play the card game for Lord that is made my Decipher Inc. A fun and enjoyable game that gets better and better after each expansion release.

Video games are a second favorite of mine. X-Box and computer games alike, I can't seem to get enough. Splinter Cell, NFS Underground, Jet Set Radio, Civilization, Caesar III, Command & Conquer just to name a few.

I did the dishes earlier and was gasping for breath after I finished. I stumbled into the living room, grabbed my portable nebulizer and went to the bathroom, I had an overwhelming urge to urinate. Staring at the floor, gasping into my neb, all I thought was "I don't want to go like this." I was scaring myself for the first time in a long time. I stayed up all night because I was afraid to go to sleep and I was too focused on my breathing. I'm not sure if I would have slept anyways.

I'm doing better now, hopefully by resting today I can build up my strength again.

Til next time, I'm done.