I just had my fourth exam in this horrible room at the hospital. Three gastrgrafin enemas and a fistula gram. They are pretty much the same exam- they just inject the dye in different ways!
My last gastrografin brought me to tears. The doc promised they would not hurt me too much this time... I was not impressed when I had to walk into the same room as last time for the fistula gram. The fistula gram- indifferent about it. I did love that my surgeon and the technician were both in the room and were chatting it up about my intestine. "Do you think it's at the top? Are you worried if it's at the top?" And Nic knowing I'm listening to everything they say, responds, "Well, I'm not worried about it! I just wonder if it is..." I really didn't walk away with any more knowledge than when they aren't in the room, it was just unusual.
What have we learned from this exam? Not a thing... except that it is way better than the gastrofrafin. Still have the draining bag. No call from the doc yet.
Tuesday, February 16, 2010
With friends like these, who needs a colon?
Eli and I found out that some of our friends are playing music and raising money for my medical bills! I am brought to tears when I think too much about it. With everything that has happened the last couple years, I wouldn't trade it for my friends.
My life is pretty good!
My life is pretty good!
Sunday, January 24, 2010
It could be worse
When I had the j-pouch surgery, I found comfort in the thought that it could be worse... People with colon cancer and kind of forced into getting the surgery. I'd imagine they were admitted to the hospital and have to have emergency surgery; when they wake up they find out they have no colon, they have this bag that holds their poop and they are stuck.
I always found comfort that it was just a temporary situation and it could only get better.
I had some abdominal pain for about a week. I called the advice nurse who said, because of my recent surgery and the consistent pain, I have to go to the ER. CT scan, X-ray, Gastrografin Enema (number 3!) and they found a leak.
One would think that after your third gastrgrafin, you would get used to it. You know what to expect by the third one. During this exam, I cried the whole time on the table. I found that if you are comfortable during a gastrografin, the tube has slipped out! Because no one should be comfortable during this type of exam.
A week after that invasive exam, I was scheduled for a tube to be placed in my belly to drain the leaking fluid- Try searching that on Google; it is not easy!
I always found comfort that it was just a temporary situation and it could only get better.
I had some abdominal pain for about a week. I called the advice nurse who said, because of my recent surgery and the consistent pain, I have to go to the ER. CT scan, X-ray, Gastrografin Enema (number 3!) and they found a leak.
One would think that after your third gastrgrafin, you would get used to it. You know what to expect by the third one. During this exam, I cried the whole time on the table. I found that if you are comfortable during a gastrografin, the tube has slipped out! Because no one should be comfortable during this type of exam.
A week after that invasive exam, I was scheduled for a tube to be placed in my belly to drain the leaking fluid- Try searching that on Google; it is not easy!
Monday, January 4, 2010
up up down down left right left right b a b a
I wish I had the cheat code to life. If I had 99 lives I would totally do everything "wrong" and see if I got different results because taking the safe route hasn't gotten me much.
I always look at the new year as a chance to start a new and forget all the bad stuff that happened the year before. When stuff goes down this early in the year, it makes it super hard to let the last year go.
The running tally of the bad stuff:
Laid off
Denied Unemployment benefits
House broken in/ TV stolen
Lost the baby
ER Visits
Hospital stays
Denied housing assistance
Car hit
*Drain pouch installed!
I really look at the lay off as the snowball that made all this happen. Is that bad? I have not forgiven them yet.
Maybe I'll go back to bed for the year. Hopefully, I'll wake up in a better place.
To be fair, I have a great family, wonderful friends, and an amazing partner for life. But what good is all that when you constantly have things to worry about and no time or energy to enjoy the company?
Happy New year!
I always look at the new year as a chance to start a new and forget all the bad stuff that happened the year before. When stuff goes down this early in the year, it makes it super hard to let the last year go.
The running tally of the bad stuff:
Laid off
Denied Unemployment benefits
House broken in/ TV stolen
Lost the baby
ER Visits
Hospital stays
Denied housing assistance
Car hit
*Drain pouch installed!
I really look at the lay off as the snowball that made all this happen. Is that bad? I have not forgiven them yet.
Maybe I'll go back to bed for the year. Hopefully, I'll wake up in a better place.
To be fair, I have a great family, wonderful friends, and an amazing partner for life. But what good is all that when you constantly have things to worry about and no time or energy to enjoy the company?
Happy New year!
Monday, December 14, 2009
Liza's ways to save
Last week I got a hair cut. Not just any hair cut. It is hard to justify something so unnecessary but after a year and a half, it was time. So...
I took all the change in our change jar to the bank (coinstar costs like 10%) and cashed it in for bills. I took a coupon from my sister for Great Clips and lopped off my hair for a mere $5 with a $5 tip.
And, I had $10 left over. Beat that. :)
I took all the change in our change jar to the bank (coinstar costs like 10%) and cashed it in for bills. I took a coupon from my sister for Great Clips and lopped off my hair for a mere $5 with a $5 tip.
And, I had $10 left over. Beat that. :)
Thursday, December 10, 2009
...
I haven't written for a while. I wish I had an excuse. I don't really have anything going on except, what I call, "still healing".
I recognized that I am more embarrassed with my condition now that everything is tucked away and I look "normal". I can't point to something and say, "see- that is what is going on!" Since the beginning of this ordeal, I have said, "This will get me back to normal; the way I was before colitis." Now, I'm afraid, it won't.
I am still going to the bathroom pretty regularly; Maybe 10-15 times a day. I still have accidents while I sleep but usually only once every two weeks or so. I am going to the bathroom 2-4 times every night. It is really hard to have a good, uninterrupted, night's sleep.
I'm dizzy, in pain, tired, and, still, somewhat depressed. Eli and I have fortunately worked out issues that have come up. Our communication has gotten even better and we are able to laugh again. It truly is the best medicine.
... Got to go!
I recognized that I am more embarrassed with my condition now that everything is tucked away and I look "normal". I can't point to something and say, "see- that is what is going on!" Since the beginning of this ordeal, I have said, "This will get me back to normal; the way I was before colitis." Now, I'm afraid, it won't.
I am still going to the bathroom pretty regularly; Maybe 10-15 times a day. I still have accidents while I sleep but usually only once every two weeks or so. I am going to the bathroom 2-4 times every night. It is really hard to have a good, uninterrupted, night's sleep.
I'm dizzy, in pain, tired, and, still, somewhat depressed. Eli and I have fortunately worked out issues that have come up. Our communication has gotten even better and we are able to laugh again. It truly is the best medicine.
... Got to go!
Thursday, December 3, 2009
Stress and Strain
During the holidays, I assume most people encounter more than the usual stress. Unfortunately, if you add a chronic illness to the mix, it doesn't get easier.
I have read pamphlets about "Taking Care of the Care-Taker" but there is still some difficulty understanding each other at times. I understand that he has to deal with real life (work, bills, hobbies) and when he gets home, he has to deal with a sick wife. That is a lot to take on. Any illness is a lot to take on for all those involved.
But no matter how strong people think the "sick one" is, life almost stops for them. And that can be just as unnerving. Imagine losing the most elementary of functions. Of course the last thing you want to do is create more work for those around you. So often, I feel, we take on more than we can handle. I guess if the care-taker does the same, you both end up stressing yourself out and disconnecting from the other.
I pride myself on my ability to empathize. But once in a while, I think I need to check in on myself.
I have read pamphlets about "Taking Care of the Care-Taker" but there is still some difficulty understanding each other at times. I understand that he has to deal with real life (work, bills, hobbies) and when he gets home, he has to deal with a sick wife. That is a lot to take on. Any illness is a lot to take on for all those involved.
But no matter how strong people think the "sick one" is, life almost stops for them. And that can be just as unnerving. Imagine losing the most elementary of functions. Of course the last thing you want to do is create more work for those around you. So often, I feel, we take on more than we can handle. I guess if the care-taker does the same, you both end up stressing yourself out and disconnecting from the other.
I pride myself on my ability to empathize. But once in a while, I think I need to check in on myself.
Road trip with my new innards!
The trip to Ohio went well. It usually takes 8 hours but with a couple extra bathroom visits it took us about 9 hours to get there.
Not too much discomfort. Of course the hardest part was not over eating during the holiday. I think I did pretty well. There are always temptations but I at least have the luxury of rest. Whenever I feel overwhelmed or just couldn't sit up straight any longer, I just went to the back room and slept. I guess people don't expect much from you after surgery.
The highlight: Eli's grandfather lives across the street from an Amish family and my soon-to-be-sister-in-law looooves animals so of course she asked to ride a horse. I was second to mount up! I can't believe I got up there. This was a big beast. I made them promise to hold the reins during my ride but how much fun!
I guess I am getting back in the saddle!
This week I have also noticed a significant decrease in swelling. I am also down to a normal bandage instead of the gauze dressing. Slowly but surely!!
I can't wait for Christmas!
Not too much discomfort. Of course the hardest part was not over eating during the holiday. I think I did pretty well. There are always temptations but I at least have the luxury of rest. Whenever I feel overwhelmed or just couldn't sit up straight any longer, I just went to the back room and slept. I guess people don't expect much from you after surgery.
The highlight: Eli's grandfather lives across the street from an Amish family and my soon-to-be-sister-in-law looooves animals so of course she asked to ride a horse. I was second to mount up! I can't believe I got up there. This was a big beast. I made them promise to hold the reins during my ride but how much fun!
I guess I am getting back in the saddle!
This week I have also noticed a significant decrease in swelling. I am also down to a normal bandage instead of the gauze dressing. Slowly but surely!!
I can't wait for Christmas!
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