10 December 2008

Jack in the Box


So after 10 days and a few more to look forward to this is how I am feeling. Although to be honest the food isn't as good as the Jack in the Box and that is saying something.

The words that have been going through my head all day are from the song by No Doubt:

Trapped in a box, four walls as sky
Got a screen for a window about two feet wide
My mind rides and slides as my circuits are fried
No room for thought, use the box as my guide
Trapped in a box

A sad commentary about american television, but the lyrics also apply to those of us that get trapped in a box for weeks at a time, a few times a year.

You can check out the video here.

Yes that is the famous Gwen Stefani as the lead singer of No Doubt. Which she did way before her solo career. As a music lesson, this was No Doubt's first ever video and cost $5000. It was never played on air.

So I am a Jack trapped in a box. But the good news is that I should be able to get outta my box on Friday afternoon.

08 December 2008

Hospital Cutbacks

Well it appears the economic hard times have hit the health care system. I swear every time I come here the pillows get smaller and smaller. The food portions too. The bed is long but skinnier. The red pillow is mine from home. No, its not a king size pillow, just your average target pillow. Next time I come its gonna be an airplane pillow and blanket on a footrest, I'm just sure of it.

So far feeling ok, but getting better. Just no sleep as usual.

16 November 2008

Ice Cold Water and Salt

This is just on recipe for getting blood out of clothes. I just used cold water and it came out. Where did the blood come from you ask? So it was new port "Inauguration" day today. Wouldn't you like to have one of these coming right for your chest.


Just in case you didn't know when you access a port for the first few times, it is pretty painful, and man does it bleed! We finished the dirty business and I put a band-aid over the gigantic hole. Within a minute or two I could feel something wet on my chest. I peeled my shirt back and there was blood running down my chest and soaking through my clothes.

Luckily I had brought some tegaderm for the occasion just in case. Tegaderm is a nice plastic dressing that I have lived on for all my life. For me its like comfort food, only comfort dressing. We hospital freaks are strange but it was nice to have the trusty old Tegaderm covering the port.

It was definitely a relief to test out the new fancy port. It worked like a champ. I can't remember the last time I had a port that flushed that nicely. Lets hope it is not needed for a while, but if it is, I'm glad it's in and working.

20 October 2008

Looks Like We Made it

Summer is finally over. I know that sounds terrible, but it will be nice to get to the snow shoveling and know what I am up against.
So I haven't posted since the last hospital stay when my port died, and honestly I have been worried about it since then. You just never know what complications your gonna have when you have surgery. Luckily its all done now in the Angio lab with local and drugs. It honestly wasn't so bad. It looks bad but the bruising will heal.
So since I have neglected I thought I would post some info about this summer. It has been busy with lots of family visiting and even a few trips. So first lets establish this. Here is Jack the dog, my dog, he looks close to how I feel right now.


The stuffed dog next to him is his faithful playmate, although at 12 years old (72+ in dog years) he doesn't get a whole lot of use, except as a pillow.
So the 4th of July came and went. We had some visitors for most of the month of July... enough that at one point I had a large tent up in backyard for some people since there was no room in the inn. JG always has great decorations as seen below, we also had the yard lights up. Small Christmas lights we string from the house to trees in back 4-5 times across the yard.
It can be very nice to sit out in the summer air and look at the lights while relaxing in the hammock.


That is one thing I didn't do enough of this summer is sit in the hammock. It kinda feels like I was running all summer, hence I feel like Jack the dog looks.
During the visits we did have time for some pool fun. It was just deep enough that I had to get in with the 18 month old nephew to keep him a float.


We visited some local gardens, which are beautiful, they had this great gazebo which I took a bunch of pictures of. They seemed to need a little contrast to me.


Along the way I felt like I didn't stop and enjoy the moments enough. Sometimes it was just shoving as much into the day as I could. Although we had many wonderful flowers this year that Costco assured us would not grow, yet they grew anyway.


The greatest lesson learned this summer. Skip and jump as much as possible, it will keep you young.

06 July 2008

Happy Birthday to me...

Ok so I have purposefully been postponing this post. Sorry.
The hospital was pretty traumatic this last time and I am just barely able to think about it clearly.
So this is a port-a-cath. It's a permanent IV placed under the skin in the chest. My friend Lauren did a flash demo of the port and the port access. It pretty cool, but be aware it shows someone poking a needle into their chest. Port Slide show.

So for someone with CF the port can be pretty important. For me it is a sad necessity. Picc lines don't work on me, I've had too many. I only need it when I'm in the hospital, but so far that seems to be at least once a year. Peripheral IV's don't work too well with CF, the drug doses we take are so concentrated that it burns the veins... literally.
On to the juicy details...
So I access my port on Mother's Day. It is sluggish but seems to work ok. The next day I go into the hospital. The port is even worse. But seems to work ok. By day 3 its basically not working at all. It takes 3 minutes to flush the port. The pump has no problems with it, but flushing with 10cc syringe just doesn't work.
Now its time to get serious. I tell the nurse we should probably re-access since it seems like it might be poor needle placement. It takes her 3 tries and she can't get the needle placed. Time for drastic measures. Fluoro.
They take me down and decide they want to pull my line straight (its had a loop in my vein for about a year). So we prep and I tell them I want to be awake for it. Just local. So the procedure is essentially a heart-cath, without going to the heart. They inserted a tube in my groin vein. Then ran up to the end of the port line with a lasso and grabbed a hold.
Tug, tug, I'm feeling them pull on it. Its not feeling so well. I can feel the tug in my neck. For some reason the line doesn't want to come loose. Well They decide to try a contrast flush on the port. It takes the flouro nurse 3 tries to get a needle in right... My chest at this point was a bloody mess.
They flush with contrast, its slow but runs perfect. The contrasts flows right out of the end of the line. It seems faster, and so we decide to leave the needle and close up shop (meaning my groin cath.) The loop still there, the needle in place but the line performing poorly. Happy Birthday Eve Eve!!
So birthday eve morning, TPA day. They run TPA ( a anti-clotting agent) into me for 3 hours trying to get the line to open up. It doesn't open. On the plus side I did enjoy Shaun of the Dead during this 3 hour tour of TPA.
So on the birthday, I decide Im feeling better, its only been 10 days but I do feel better and I am ready to go home. So I get discharged.
Day 2 at home and my line is completely closed not working at all. I call the doctor and we decide instead of doing surgery this close to my hospitalization we should wait, and I can finish Cipro on oral drugs.
So this is my traumatic birthday hospital celebration.
Lessons learned:
  • More dedication in my monthly port flushes. I am good but there have been times I went 5 weeks instead of 4.
  • Nurses only get 2 shots at the port before they have to find someone new. I worry that I scarred a new nurse that was watching when they were trying to get it to work. Poor kid.
  • Flouroscopy is cool to watch.
  • Going into shock in the flouro room is not good and is not fun.
  • I talk a lot when I'm nervous. I am sure that I was completely entertaining(or annoying) to the medical staff during the procedure. I don't think I ever stopped talking, even during the shock.
  • Blood pressure can drop a lot during shock, and it doesn't help the shock at all to know and see it.
  • It takes me a while to process this kind of stuff to be able to even write about it.

The good news, I had fantastic sushi the night of my birthday at this place right by our house that we love. And this was on my plate.
The sushi chef is a true artist. This is one piece of carrot cut and twisted to look like a butterfly. I am glad that there are beautiful things to live for each day, since some days I wonder why I am still trying. And especially after hospital experiences like that last one.

08 May 2008

You are here!

Oh wait, that's where I am, not you. Going back in folks. If you are around the area feel free to drop in.

29 April 2008

The Wise Man Built His House Upon...

OK folks, here is the stuff you have been waiting for. The completed kitchen. Please ignore the lack of paint in some places, that is my fault. You will notice a lot of stone. Granite counter tops, Travertine floor and back splash and window sill. We love it!!!!

This is the beautiful window.

This is angle 1.

This is angle 2.

10 April 2008

Life Lesson at the Hardware Store



So there I am in the middle of life. Ya know crazy, running around. And right now its even worse than usual. JG and I are remodeling our kitchen. The house is in shambles. There is dust everywhere. And I was looking at appliances at the local big box. I took my camera so that I could show JG what I had found and get her opinion without her having to go. Her work is extremely busy right now, and I figured she may not get to see it if I didn't take pictures.
Who would have thought I would run across this kind of saying. I know that at first you read the English "Look inside" but that is not what I was talking about. Although the English is true and profound, I was looking at the Spanish. I remembered the words, even from my High School Spanish class. "open the door", or literally "the open door."
We all have so many opportunities. Sometimes for really profound things, sometimes for simple things. I've been thinking about this since one of our neighbors died this week. He was 98, 10 days from 99 actually when he died. JG and I were drawn to him for some reason. We would sit with him at church and talk to him when we could. I would always come into church and JG would poke me and say, "Go say hi to Harold." Now, I don't know if he cared or not, but he would always smile and talk to me for a minute. The last time we saw him at church he was asked to stand up and talk about his favorite church song. He got up and spoke while we were sitting there next to him. He was so strong and powerful. He brought JG to tears. 3 weeks later he is gone and returned to our Heavenly Father. I know that he is happy.
I hope that I continue to open the doors, and also walk through those doors that are already open. And I am very glad that JG pokes me through some also.

---

Less serious note. Here is our kitchen in shambles.

15 March 2008

100 Things

OK so some of the people on the cf messageboard posted 100 things.
I thought I would put mine here, seemed like a great blog idea.

0. Jack isn't really my name, but it is the name of my dog.
1. I am paranoid about Internet anonymity.
2. I wrote #43 first in this list, I did the entire list completely in random.
3. My wife is my greatest asset against CF.
4. I have won awards for poetry.
5. CF has killed 3 people in my family. I am the lone survivor by many years.
6. I love slippers. Sometimes I wear them for the day, everywhere.
7. I'm a Mormon.
8. I once rebuilt a Volkswagen Rabbit (Diesel) Transmission.
9. I NEVER NEVER NEVER forward messages that say "Forward to everyone." I hate them.
10. I was taught to hide my feelings.
11. Currently I am reading 3 books.
12. My wife calls me Frank and I call her Francene.
13. Frank isn't my name and Francene isn't my wife's name.
14. I love reading National Geographic, its the only magazine that I keep all my issues.
15. My biggest hospital pet peeve is people not knocking and just walking in. "I'm sorry, I didn't hear you knock..."
16. I was a Lifeguard during High School.
17. I still feel guilty about what my family missed out on because of my CF.
18. I always wanted to write a book.
19. I remember every detail of my younger sisters viewing... I was 6 years old.
20. I am exceptional at what I do, and I know it!
21. I believe in freedom of choice.
22. I drink Mountain Dew almost constantly.
23. I prefer to watch oriental kung fu movies in the original language, with english subtitles.
24. I discern people very quickly, it's a gift.
25. I never judge people, its different than #24, look it up.
26. I had to quit snowboarding because of CF, I hate it.
27. I get more like "Monk" as I get older with CF (Germiphobe.)
28. I am a terrible driver, and I know it.
29. I have read more than 1000 books since I was 14.
30. My Arthritis hurts every day. I ignore it.
31. I volunteered at the local children's hospital for almost 10 years, beginning at age 12.
32. I have read the entire King James Version of the Bible, Old and New Testaments.
33. I feel guilty for still being alive more often than I should.
34. I have serious OCD, but it never keeps me from sleeping.
35. I have serious OCD, but not many people know it. I constantly count things.
36. I think that man in general is very arrogant to think that he can destroy the earth. In reality he will destroy himself long before the earth is destroyed.
37. I believe that a boy of 14 saw Heavenly Father and Jesus Christ in 1820 (see #7.)
38. I use music as a coping tool, it "calms the savage beast" as they say.
39. I don't sleep more than a few hours at a time, even at night I wake up at least 3-4 times each night.
40. I collect Music Videos online, I have over 800.
41. I often wonder why I am still alive.
42. I use commas gratuitously.
43. I am frequently under-estimated.
44. I can have a commanding presence in spite of my size.
45. I did photography as a hobby and loved it.
46. I did photography for a living and hated it.
47. I have been 5' 3" since high school.
48. Being short is not from my CF, but from my mother.
49. My schooling is in Psychology and I run websites for a living.
50. I am way more satisfied with myself than I should be.
51. I quit counting near death experiences after the 10th time.
52. My most recent near death experience was in December 2005.
53. I had to quit skateboarding because of CF. I hate it.
54. I seek out deadlines.
55. As a kid I lived on Twinkies and Milkshakes frequently.
56. I can't eat Twinkies anymore.
57. I sing in my car whenever I am driving.
58. I never planned on getting married.
59. The first time I saw my wife I knew I was going to marry her.
60. I don't believe I'm worth the amount of money my drugs cost.
61. I wish I could do more to inspire younger kids with CF.
62. I have won awards for photography.
63. My wife is very "expressive" of her opinion. I LOVE that about her.
64. CF has limited my career.
65. My wife is paranoid about me dying, and I guess rightfully so.
66. I love the vampire genre, I think it has to do with the idea of living forever.
67. I'm not as geek as most of my co-workers.
68. My "Mountain Dew" gut bothers me more than I thought it would.
69. My ancestors died in Illinois and Missouri in the 1840's because of what they believed in.
70. I am a history junkie (as evidenced by my job at footnote.com.)
71. My brother has done many things that I would have done had I not been born with CF.
72. Patience is my second greatest asset against CF.
73. I believe in consequences for our actions.
74. I sometimes wish people would receive their consequences immediately.
75. I'm a lot older than I ever expected to be, since I got my wife, I'm glad about that.
76. I miss my friends with CF, most have died.
77. I love eating dry Cheerios with a can of Coke.
78. My work requires crazy hours and occasional 30-40 hour days... and I love it.
79. The best thing I learned in college was how to juggle.
80. I consider that I have 2 full-time jobs, CF and footnote.com.
81. I feel bad for dragging my wife into life with CF, but I am glad she is with me.
82. I sleep the best with loud heavy metal music playing on my ipod (this works esp. well in the hospital.)
83. I had to quit waterskiing because of CF. I hate it.
84. I love to stay up and talk with my wife for hours on end.
85. Apple Computers! Not only stylish, but UNIX.
86. I love the east, Japan, Korea, China. I especially love the food and the history.
87. I have 5 year range goals.
88. I love snug harbor (in New Orleans, look it up.)
89. I know the meaning of life, but you probably don't believe me.
90. Most of my growing up lessons I learned from Grandma and Grandpa who took care of me quite a bit, while mom and dad were trying to afford me.
91. I spent every Christmas holiday between age 12 and 21 in the hospital so that I didn't have to miss school.
92. I spend a lot of time just thinking about things.
93. I believe Caffeine helps people with CF.
94. My parents used this phrase too often for me. "We never thought you could do it."
95. Sometimes I get so tired of CF I think that death might not be so bad.
96. The day I no longer work full-time will probably be the second saddest day of my life.
97. My favorite birthday was my 30th... we had a huge luau with all sorts of people from my past.
98. I am glad we are all different
99. I think more lists should be zero based.