Thanksgiving?

Tomorrow is my family's Thanksgiving Dinner, since most of us will be at the beach next week.
Thanksgiving doesn't mean much to me this year. I've always been big into Thanksgiving and at family dinner going around the room and saying what we are thankful for, but this year, not so much. Since I've been so sick this year, had 3 pain blocking procedures and they all failed, lost my grandfather, and pretty much lived a non existent life, what do I have to be thankful of?
I'm still alive, but I am no closer to being off the pain meds than I was last year, the Dr's have given up on finding what is wrong with me, I have no friends, no contact with the outside world, except through the internet.
With my stomach problems, don't know what I will be able to eat tomorrow, plus I am having additional digestive issues that required a 5 hr ER visit yesterday.
I seriously don't feel thankful for anything except for the fact that I am still alive.

On the other hand, I have found another person that has the same syndrome that I do. She is a 3 yr old little girl and she is the first person, other than me that I have heard of that has my syndrome. She could use some prayers as she has been really sick and in the hospital for the past few weeks. Her name is Eithene and you can find out more about her here: http://www.fromthebanksofjordan.blogspot.com/ .

Also, if any of my readers are artistic in blog creation, I could really use some help with a blog redo. I try to add templates, but my words either get cut off or it looks strange. I don't want to go all out, but just something cheap and cute would help.

Early week update

The clock says 12:10am. I have been asleep for the past 4 hours, home from a 4 hour trip to the ER, where other than a few x-rays & an EKG was done, nothing else was done. No pain meds given, no meds to help my stomach, nothing. The Dr. was afraid that the Dr.s at the main hospital downtown are just making me worse my loading me up on pain meds and making me comfortable. And the past 3 times I've been at the main hospital, I've had the same 3 Dr.'s, so it's not like I'm seeing a new Dr. everytime I visit. These 3 Dr.'s know me, they know my history, they know my case.
I am afraid that today will bring another day of an ER visit. I have reached or am reaching the point of last resort. Eating is no longer enjoyable, but most painful from the first drop of food that enter my esophagus, until it leaves my body. Tube feeds are just about as painful as eating. The little amount of pain med that I have is not doing the work, I am in constant pain. The chest pain has started, and it's not my heart, which means that my esophagus is inflammed and shutting down again.
In writing this I am just at my breaking point, I have tears streaming down my face, knowing that I may have reached the point of last resort, is not fun or comforting.
So, what is the last resort?
Other than opening me up and having a look from that perspective? Knowing that I'm not strong enough to make it through surgery?
The last resort is to put in a permanent catheter/IV/PICC line, and hook me up to TPN feeds. All feeds will be given through the IV and it will give my COMPLETE digestive system a chance to shut down and heal it's self (or that's the idea).
But, with knowing that part of my disease causes vital organs & body systems to shut down/ stop working, maybe that is already happening and the TPN feeds will be a good thing.
My brain is going 100 different places all the time. Thinking that maybe if I stay at home, get worse, then go to the hospital, they will take me more seriously. Thinking that the pain is too great to keep going. Thinking that my body is shutting down, and I have a birthday in less than 3 weeks, and I can't see myself making it that far.
The light at the end of the tunnel is gone. The support that I once had is gone or is fading. The medical stuff has been going on for a year. I am exhausted. My body is exhausted. I don't know how much longer I can go on like this.

I know that I have many prayer warriors out there, so I come asking for my warriors to pray. Pray that I can make it though, pray that something can be done, pray that I can get relief from my pain, pray that I can get the nutrients I need.

So much for today

So much has happened today, and I know I have alot of writing for today.


I went to the GI doctor this afternoon and played stump the Doctor and Nurse Practioner. The NP had never heard of VATERS syndrome and when she went to look it up in her medical enclyopedia it wasn't in there. I tried to tell her that but she didn't listen to me. I told her to look it up on google, and she found it. She then proceeded to tell me about a very new surgery that is supposedly being done at one of the hospitals in Austin, but couldn't remember the Dr.'s name that is doing it. Then the Dr. comes and and proceeds to tell me that he has no idea why I am having my symptoms/ problems and doesn't know what to do about them. How frustrating is that! I asked him for a prescrption for Percott, and he said that he doesn't have a license to write narcotic pain meds, and to find a pain management Dr. to write the script. WTH!!

He did write me a script for an anti-spasmatic drug, and when I took it to the pharmacy the pharmastist tells me that that drug had been pulled off the market years ago, and just recently put back on, but it was pulled because of the number of bad reactions from it, and the drug is about 100% more expensive than before it was pulled. Great! I have no insurance and am now in search of an extremly expensive and potential dangerous drug. I'm calling my Dr. back Monday morning to inform him of this change.

Now to Ike stuff. It is very depressing reading about the conditions on the coast and seeing the pics. I have some very amazing pics that I have fpund and will post, but first some info.

The city officals of Galveston and the Bolivar Pennisula are now saying that they think that some of their residents were washed out to sea and may never be found. And there have been survivors that have told them that they were riding out the storm with their friend(s) and the storm surge cam into/ up the house and pulled their friend(s) out to sea. How sad. There maybe hundreds of missing people that may never be found because they floated away. I hope and pray that this is not the case, but we may never know.


You may have heard about the lion that took refuge with her owner inside of a church. If you haven't here is the lion, Shackles:

Shackle, an 11-year-old African lioness lays on an alter at the First Baptist Church, Tuesday, Sept. 16, 2008, in Crystal Beach, Texas. The lion and her owner waded through Hurricane Ike flood waters to the church after they were unable to make it off Bolivar Peninsula prior to Ike's landfall. (AP)

Alot of animals have been displaced because of Ike. One example, a gator walking down the middle of a road:

What is one thing that can stop the clean-up process?

A pelican:

A brown pelican rests near the debris pile on Seawall Boulevard and 23rd Street in Galveston on Thursday. Volunteers with the Houston SPCA were called to catch the bird, which had halted the debris cleanup. Galveston County Daily News.

Below is a very powerful before and after picture from Crystal Beach, TX.

Some other before and after pics:

After

Before

Ike will go down as being a very destructive storm and I hope that his name will be retired in memory of the 50+ (so far) people who have lost their lives because of him.

If you want to help, but don't know how, please check out the following websites of organzations that I support and doing things to help the survivors ( humans and animals) and evacuees of this storm and it's aftermath.

http://www.southaustincares.org - Austin New Church

www.mlfnow.org - Mobile Loaves and Fishes

http://www.centex.redcross.org - Austin RedCross Chapter

http://www.austinfoodbank.org - Capital Area Food Bank

http://www.houstonspca.org - Houston SPCA