I guess I need to let you all know that I am doing better.
I've been enjoying some healthiness lately, and I've been so 'busy' I haven't been able to go to the blog that I reserve for complaining!
So the new treament, CIMZIA, is working!
Praise GOD! Praise GOD! Praise GOD!
I had a reaction to the injections (no big surprise there)....and it was a pretty awful 2 1/2 days....BUT!.....the medicine is working.
I still have diarrhea, and lack of bowel control, but I do not feel "SICK". Hard to explain. But I can tell the difference. Haven't had any fish hooks since then. Plus, I will always have diarrhea and lack of bowel control. I now have 'short gut syndrome', as a result of having a bunch of my guts removed. But hey.......God has granted me peace about it, and I am just so blessed at having another chance at 'life'.
So.......next Cimzia treatment is on Tuesday. I will be pre-loading with Benadryl, in the hopes of averting or minimizing a reaction.
For now......I'm back.
And I am oh so very grateful.
Thursday, February 26, 2009
Tuesday, February 10, 2009
48 Hours
In 48 hours...
I will begin receiving a new treatment.
Right now...
All I can think about is my mouth.
I have bloody, painful sores all over the inside of my mouth.
My mouth, my gums, my tongue, my throat.
They are related to the massacre of disease that is raging in my guts.
If you were to chew on a sandwich made of stainless steel and razor blades, you might come close to what I'm experiencing right now.
In 48 hours...
A new journey begins.
In 48 hours...
I will begin receiving a new treatment.
Right now...
All I can think about is my mouth.
I have bloody, painful sores all over the inside of my mouth.
My mouth, my gums, my tongue, my throat.
They are related to the massacre of disease that is raging in my guts.
If you were to chew on a sandwich made of stainless steel and razor blades, you might come close to what I'm experiencing right now.
In 48 hours...
A new journey begins.
In 48 hours...
Monday, February 2, 2009
Fish Hooks
So at 12:01 a.m., pumped up on adrenaline after watching over six hours of football (most of it played OVER and OVER and OVER again), I made these awesomely grandiose plans for my Monday.
All of the laundry would get done.
The huge box of 'paperwork' would get tackled, completed, and filed.
And I would scrapbook the rainy afternoon away.
And then the fish hooks got in the way.
6:30 a.m.
Diarrhea started.
Eight times before 8:00.
Fish hooks, you say?
That's the way I describe the pain.
Imagine that a fish hook is being pulled through your guts, all thirty feet of them. Every time you have a bowel movement. And then imagine that you have over ten bowel movements a day. What if you had fifty bowel movements a day?
Some people compare it to swallowing a saw.
Nope, it's fish hooks for me.
So my grandiose plans have been shot down.
I will settle for getting all the laundry done.
Perhaps next Monday I will put scrapbooking FIRST on my list.
All of the laundry would get done.
The huge box of 'paperwork' would get tackled, completed, and filed.
And I would scrapbook the rainy afternoon away.
And then the fish hooks got in the way.
6:30 a.m.
Diarrhea started.
Eight times before 8:00.
Fish hooks, you say?
That's the way I describe the pain.
Imagine that a fish hook is being pulled through your guts, all thirty feet of them. Every time you have a bowel movement. And then imagine that you have over ten bowel movements a day. What if you had fifty bowel movements a day?
Some people compare it to swallowing a saw.
Nope, it's fish hooks for me.
So my grandiose plans have been shot down.
I will settle for getting all the laundry done.
Perhaps next Monday I will put scrapbooking FIRST on my list.
Wednesday, January 28, 2009
Blues and Whites
I just took and handful of blues and whites.
Rough night. Going on 9 hours now.
And we all know that I lean towards the crazy side.
But now I may have gone over the edge.
I think I saw Jesus' face in my bathroom doorknob.
Either I'm really high, really tired, or have spent far too much time on the toilet staring at the doorknob......
Or maybe it's God's way of saying He's with me.
When I feel better (someday), I'll take a picture and let the people decide.
Rough night. Going on 9 hours now.
And we all know that I lean towards the crazy side.
But now I may have gone over the edge.
I think I saw Jesus' face in my bathroom doorknob.
Either I'm really high, really tired, or have spent far too much time on the toilet staring at the doorknob......
Or maybe it's God's way of saying He's with me.
When I feel better (someday), I'll take a picture and let the people decide.
Tuesday, January 27, 2009
The First Cut Is The Deepest
I just awoke from a horrible, horrible, horrible dream.
Billy left me because of the Crohn's.
I am devastated.
Thinking she is 'helping' me, my mother steals the children.
I am trying to convince Billy to save our marriage.
He gets sick.
The doctors say he has contracted some sort of infection that has damaged his kidneys.
He will die in days without a transplant.
Of course, I cannot donate a kidney because of my Crohn's.
My mother leaves a voice mail message on my phone, that Jake has started to pee 'blue'.
After many failed attempts, I am finally able to reach her.
Apparently, my children have contracted the same infection, and both will die within days as well.
I demand that she return the children.
She refuses, saying that I just need to 'let it go'.
Somehow, I find the children in a hospital in Tampa.
They are dying.
Billy is dying.
No one cares.
Everyone has given up.
I refuse.
I decide to put the three of them together in a different hospital, and I go on a search for kidneys.
***Note to readers----- I kept waking up from this dream, and I forced myself back to sleep to solve it. I was not going to leave it unresolved. It was so important to me, and I think you'll see why if you just hang with me.***
I start hanging out in emergency rooms, looking for people who have lost their loved ones.
I continue to touch base with my dying family. Interestingly, the kids haven't realized how sick they are, and are taking things in stride with a great attitude. Billy, however, is losing his grip on the fight.
I find a facility with a kidney.
Billy is declared ineligble due to the way he is treated his body in the past.
Rather than choose which child to give the kidney to, Billy breaks into the facility and cuts the kidney up with a pair of scissors.
He is now in another facility, separate from the children, but is not incarcerated.
I continue my quest.
I network like mad.
I get on the phone.
The internet.
Facebook.
I am able to find friends from long ago who have contacts in the media, in Hollywood, and in politics.
Some know of others who needed organs for their children.
We find the kidneys.
Together.
And we live.
Billy left me because of the Crohn's.
I am devastated.
Thinking she is 'helping' me, my mother steals the children.
I am trying to convince Billy to save our marriage.
He gets sick.
The doctors say he has contracted some sort of infection that has damaged his kidneys.
He will die in days without a transplant.
Of course, I cannot donate a kidney because of my Crohn's.
My mother leaves a voice mail message on my phone, that Jake has started to pee 'blue'.
After many failed attempts, I am finally able to reach her.
Apparently, my children have contracted the same infection, and both will die within days as well.
I demand that she return the children.
She refuses, saying that I just need to 'let it go'.
Somehow, I find the children in a hospital in Tampa.
They are dying.
Billy is dying.
No one cares.
Everyone has given up.
I refuse.
I decide to put the three of them together in a different hospital, and I go on a search for kidneys.
***Note to readers----- I kept waking up from this dream, and I forced myself back to sleep to solve it. I was not going to leave it unresolved. It was so important to me, and I think you'll see why if you just hang with me.***
I start hanging out in emergency rooms, looking for people who have lost their loved ones.
I continue to touch base with my dying family. Interestingly, the kids haven't realized how sick they are, and are taking things in stride with a great attitude. Billy, however, is losing his grip on the fight.
I find a facility with a kidney.
Billy is declared ineligble due to the way he is treated his body in the past.
Rather than choose which child to give the kidney to, Billy breaks into the facility and cuts the kidney up with a pair of scissors.
He is now in another facility, separate from the children, but is not incarcerated.
I continue my quest.
I network like mad.
I get on the phone.
The internet.
Facebook.
I am able to find friends from long ago who have contacts in the media, in Hollywood, and in politics.
Some know of others who needed organs for their children.
We find the kidneys.
Together.
And we live.
Thursday, January 22, 2009
Today
Today was a bad day.
I guess.
I was supposed to drive to the big city. Something I have done thousands upon thousands of time.
To see a doctor.
About having my tubes tied so that I can try yet another potentially deadly yet possibly life extending or life enhancing or life changing POISON.
But my body wouldn't let me go.
I got up.
I showered.
I felt like I was going to throw up.
I had an anxiety attack.
And then the diarrhea started.
And it didn't stop for two hours.
Even with Xanax.
And Lomotil.
So I gave up today.
I put my jammies back on.
And I turned my electric blanket on high.
And I went back to bed.
And four hours later, I feel better.
Physically.
The diarrhea has stopped.
For now.
I still feel nauseous.
I have never 'no called, no showed' for a doctor's appointment.
Never.
Until today.
Hopefully they'll forgive me.
Today, I really don't care.
Tomorrow, I might.
I guess.
I was supposed to drive to the big city. Something I have done thousands upon thousands of time.
To see a doctor.
About having my tubes tied so that I can try yet another potentially deadly yet possibly life extending or life enhancing or life changing POISON.
But my body wouldn't let me go.
I got up.
I showered.
I felt like I was going to throw up.
I had an anxiety attack.
And then the diarrhea started.
And it didn't stop for two hours.
Even with Xanax.
And Lomotil.
So I gave up today.
I put my jammies back on.
And I turned my electric blanket on high.
And I went back to bed.
And four hours later, I feel better.
Physically.
The diarrhea has stopped.
For now.
I still feel nauseous.
I have never 'no called, no showed' for a doctor's appointment.
Never.
Until today.
Hopefully they'll forgive me.
Today, I really don't care.
Tomorrow, I might.
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