Tuesday, January 26, 2010

Guess who I ran into?

The setting: I am sitting in the waiting room at the hospital. I look around and notice that this tiny room actually was a semi-private room at one time. It is obvious where beds were supposed to be and there were places for medical equipment to to plug into the walls.

There is a man and his wife sitting in front of me. He is ready for his proceedure. She is closing her eyes but holding a book. She is too tired or stressed to read. He looks calm. Notices my watch and reaches into his backpack and puts his watch back on.

There is a man sitting out of sight around the corner. A nurse calls his name and introduces herself. She asks to see his bracelet and reads his name out loud. She asks him if that is him. He laughs and says "I don't know anyone who would want to pretend they are me right now". The room rang with laughter.

There is another woman sitting to my right. She has her back to me but turns when she hears me laugh. She is heavy and has a beautiful smile.

I am sitting beside John. We both have our Iphones in hand and we are reading books. We both like ebooks. I am wearing two hospital gowns, socks and little blue covers on my feet. If I don't think about the fact that I am mostly naked, I am comfortable because it is hot in here. John looks at my socks and asks me if they are mine. They are. The only thing I was allowed to keep on.

My name is called and I think What? I look up and see a man looking at me with a friendly look on his face. Is this my doctor? I only met him once before. This guy does look familiar. He leads me around the corner and into a small interview room. He says he noticed my name on the board and wanted to know what happened to me, why I didn't show up for my follow up? Oh Crap, this is doctor number 1. This is the doctor I didn't want to see a second time and here I am sitting in a freakin' gown.

I didn't want to do this but I had to. I had to break up with him to his face. I had tried to avoid it. I took a deep breath and told him that I had cancelled my appointment because I didn't like the experience of having my appointments in the clinic. I do not like to wait for appointments for over an hour and it seemed likely that the waiting would be the norm.

Yup, that would be the equivalent of, "It's not you, its me." I was at a disadvantage, I don't like to hurt people and there just seemed to be no point to tell him that I didn't think he listened to me, that he seemed to full of himself and too sure of his specialist ways and didn't connect with me his patient. I couldn't tell him that I expect to be a partner in my medical team. I didn't tell him that he really pissed me off.

I smiled and let him down easy. I made sure he knew that I had cancelled our last meeting, I had not stood him up and then I thanked him for checking in with me when he was me.

Then I shuffled in my little blue paper booties and black socks back to my chair in the semi-private/waiting room, past the lady with the nice smile and the silent couple over to my corner.

If I hadn't been starving and if my colon hadn't been so shiny clean from the fabulous klean-prep I might have shit myself or thrown upa little bit into my mouth. But I didn't.

And all of this happened before I had my colonoscopy. I will have to tell that story soon.

Sunday, January 24, 2010

The good and the bad

The good news is that I am not in really bad shape. The bad news is that I am officially in another flare.

The good: the colonoscopy went without any difficulties
The bad: I have been bleeding and in more pain since the test

The good: there is swelling up the left side only
The bad: the new doctor suggested some of my pain may be caused by irritable bowel. (What a bunch of crap)

The good: my hair stopped falling out
The bad: it might start to fall out again.

The good: the test being in the hospital with many others booked seemed to keep everything on schedule. I didn't wait at all.
The bad: the tight schedule prevented much discussion with the doctor and I don't really remember much of what was said. My partner was not included in those discussions.

The good: the drugs knocked me out completely and I didn't feel a thing
The bad: I feel worse now and don't expect a speedy recovery.

The good news is that I wasn't told to take Prednisone! The bad news is that I have to increase my mezavant (the reason the hair may start to fall out again) and it can take 4 weeks before it helps.

The good: I am nearly finished with this post.
The bad: The need to post will never end.

Thursday, January 21, 2010

Oh Gawd

That stuff is terrible. All the things I read about it were true. It tasted terrible, smelled worse and seemed to never end. By the time I was finished I wasn't feeling too good. I was freezing and tired and miserable. I don't ever want to spend that much time in my bathroom.

I don't know why a doctor would make someone use that when Pico is so much easier and very effective.

I don't have to take any more and my lovely daughter brought me some broth, juice and jello to help me feel a little better. I just have to wait for the scope. I think I will focus on the fact that I have the day off and I will have good drugs.

Wednesday, January 20, 2010

Eating Extravaganza

So tonight I am having my night-before-the-Prep Eating Extravaganza!

Well okay that is a bit of an exaggeration. I ate pasta out of a can tonight and I enjoyed it! I usually eat fresh good quality meals. Every once in a awhile, when no one else cares and I just can't cook something when I get home late, I eat some crap. It will probably move through me easier than fresh vegetables and fruit at this point. This scope turns out to be quite timely. I think I would be contacting the doctor if I didn't have this scheduled already. I had 5 trips to the bathroom yesterday, lots of cramps.

Tomorrow I get to use Klean Prep for the first time. I have only used Pico-Salax before and found it easy to use and effective. My new doctor prefers Klean Prep so I agreed to give it a try. I have read a lot about it on blogs over the last year and I must admit that I am a little concerned. That is a lot of fluid that I have to get down.

On the brighter side, my daughter came home and made me cookies and jello. The cookies are for tonight and the jello is for tomorrow so that I can at least have the sensation of chewing! What a great kid.

I am lucky.

Thursday, January 14, 2010

Toilet Dreams

I woke up Tuesday morning with a start. The image from my dream was still vividly suspended right before my eyes.

In my dream I went to the bathroom and incorrectly sat myself on the toilet. My aim wasn't good. From my body I expelled blood, mucus and parts of my colon. I looked down and there it all was on the floor and I could see parts of my anatomy that I shouldn't have been able to see in that position. I was very upset with myself for the mess that I had made. I was very upset that parts of my colon were on the floor.

What was missing from the dream was the pain. There was no pain. It just happened without any feeling. Could it be that I forgot the pain? I mean what it really feels like when you are in a flair?

If I did, I no longer have that problem. After days of discomfort, moments of concern, tonight the pain really hit. The worst of it is in my upper left abdominal area but it hurts on the right when I am cramping. I had to close my eyes, take deep breaths and talk myself through it so that I could get up and go to the bathroom. The worst of it passed, I went to the bathroom, I expelled a small slightly pink and mucusy bm.

I increased my meds back up to the full dose on Monday because I was thinking something wasn't quite right. I think that was a good move but maybe too little too late. The silver lining is that the colonoscopy is only a week away now so we will know for sure what is going on and we can treat it accordingly. I just need to get through the next 7 days.

Monday, January 4, 2010

January 2010

January can be so tough. It actually snowed enough that we had to pull out boots today and brush off the car. It was cold outside and it was cold inside. Everyone went back to work and school today. Everyone I talked to, read about or heard from was tired!

I have planted myself on the couch and I seem unable to do anything productive. I am so tired it almost hurts. We had company for the last 5 days and we had more fun than we could have planned for. It was hard to see everybody go but it is also good to have the quiet and the calm now. Hopefully I feel rested sometime this year, I mean this week!

I have started the countdown now that the holiday is over. I have a colonoscopy coming up on January 22. Everything about this will be different. I have a new doctor who does this in a hospital (my old doctor was able to do these things in his office). I don't like hospitals much. My new doctor prefers a different type of prep. I used pico salax last time and it actually wasn't too bad. I had to use it twice, once in the morning and then at dinner time the day before the test. It did what it was supposed to do but I didn't have to drink gallons of yucky tasting stuff. This time I have to drink gallons of yucky stuff. I know that the colonoscopy won't really be all that bad. I will take the drugs and drift away and they will check me out and then I will know what kind of shape I am in and that will be good since I don't trust my own judgement anymore unless I am bleeding. I really just have to deal with change here because the test itself is a good thing.

I have continued to have sporadic pain, discomfort and sometimes I feel like "I need to go" and I can't. Other times I have to go! I am still fighting the fungal infections and despite the medicine that has been prescribed to me (nothing very strong as my g.p. feels they will destroy my liver) I have made little progress. I don't think I have lost any weight but I am hungry all the time and I am craving things like chicken and potatoes not chocolate and snacks. I am either so tired that my body needs extra fuel or I am starting to have absorption issues.