Tuesday, June 9, 2009

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.

2 comments:

midnightrevel@yahoo.com said...

Emily,
I am so sorry that you are experiencing so much pain. My prayers are with you. I wish I could help.

Kristi said...

I stumbled onto your blog last week. I feel so horrible for you. I wish you could be pain free. I am so sorry you are going through everything you are. You are one strong lady. Please know that even though I am just one person, I will be praying hard for you daily.

Praying in Castle Rock, CO