Wednesday, April 29, 2009

I took some happiness.

Bathroom: 3 more times (all produced f.m. and mucus, but the cramps and pain were excruciating and I guess I ate something that my colon doesn't like or it simply is letting me know that it is still in charge not matter what the doctor says and that it will behave when it wants to)

My appointment went well. My doctor basically said you have a sick colon, get used to it. He said it with kindness but he didn't try to tell me all would be fine now. I do like him. He had some more suggestions about my diet (no roughage, more protein and carbs and I can add some sauces) and he frowned about my spinach and cooked carrots. He said I should not start focussing any more on my food or I will go crazy. I said "you mean crazier". He smiled. He has put me on a new med called mezavant (the newest form of Mesalazine - 5 ASA - slow release). The pills are bigger than anything I have ever swallowed. I choke up when I look at them. He has encouraged me to call if I have questions and set another appointment for August. He has also told me to respond to my body. If I start to flare I am to stop tapering the pred and go back up 5 mg for 2 weeks and then try again. As I said, I like this guy. I will try what he tells me. Except that I am not giving up my spinach. I needs vegetables!

After that I had to take my medical certificate in so that some one will pay me for some of this time off. Then I went for blood work to see what sort of shape I am in after weeks of pred and before mezavant takes over. From there, I went to get my new drugs. I walked around Costco waiting for my prescription, hoping that I would be rewarded. I hoped and prayed that around at least one corner, at the end of one display, there would be a woman dishing up lovely little bites of cheesecake or something chocolaty. There was NOTHING! I was all out of energy and I had to go sit by the pharmacy and wait. Sick leave finished, no pay and no free food also means no damn shopping at Costco.

Have I tugged on your heartstrings enough or pushed your "this woman keeps complaining" button enough? No! Good.

I got home and went to the bathroom and the pain started. My colon was screaming. I sat on the toilet and it took all of my will power to keep from slamming my fist into the wall beside me. My legs started to shake. I couldn't finish. I had to go to bed. I lay there in a ball.

School started today for me. I haven't accomplished very much with everything else going on. I did a little bit of reading but I know what I will be doing tomorrow morning.

I also spoke to the hospital today for Pook. We have an appointment for Monday and a plan to go to the ER if we need to be seen sooner. We don't want to go to the ER because they won't believe there is a problem with the shunt, they will give her more medication for migraines that at the least will not help and at the worst will make her sicker (again). And all that will require hours of waiting and starving and I am not in great shape for any of that. Wish us luck. We stayed home today. We could end up there tomorrow. She lay on the couch all afternoon and will not even stay upright to eat.

Finally, at least for now, we are keeping close watch on the flu situation. It is of interest. I am most stunned by the ignorance of some people like those countries that will not purchase American or Canadian pork because they are afraid. You can't get the flu that way! I hope that this resolves quickly and with few deaths and the very best outcome possible.

Oh, I also ate a good dinner. I made myself a very mild chicken curry. I couldn't wait another day. I added sour cream and chicken stock and some light coconut milk to make it mild. It was soo good with rice! and I ate a little bit of avocado on the side. Yummy!!!!

I needed something happy and good. I took it.

Sergeant Fred Colon

Bathroom: 1 (Easily expelled soft and mostly formed with a messy 'mucusy' finish and lacking in aromatics)

Fred Colon seems a bit lazy today. Too lazy to kick up a fuss anyway. I felt pressure and urgency and surprise, surprise, there was a performance. This was good. I no longer expect things to work as they were once expected. I expect Fred Colon to stand around, lean against the closest ulcer and try to hide below the radar as he puts pressure on my rectum. If possible, Fred, will pretend to not even exist.

Today we are going for a visit to the GI. Sergeant Fred Colon is likely somewhat shaken at the prospect of facing a superior and so preparations have been made. He has given his boots a shine and straightened his uniform. Must look our best. Must not cause complaints or the nasty scope may invade our easy assignment.

I just have to come up with the questions to ask. How do I know when things have gone too far? I don't want to get that sick again. I would rather catch things a little faster. I need to give Sergeant colon a swift kick in the ass much more quickly than that.

Tuesday, April 28, 2009

8 pred, 2 A's, 1 GP

Bathroom: 3 (some solid ending with painful crampy messy stuff and mucus. Feeling like I need to go all day. Gotta love that urgency!)

Went to see my GP today. He had reports from the GI to review and then we assessed my overall health. I am so much more than just a poorly behaved colon you know! The colon and prednisone make things complicated so we are sort on hold to see how things play out. My history suggests a need for concern over anxiety and depression but both are affected by pred so we will get a consult from a specialist before we put any more meds in my system. In the meantime, I am off work for a while longer as I try to build back some strength and get over the prednisone side effects. I am really looking forward to the joint pain leaving me, being able to sleep again and feeling like eating when I am hungry rather than just wanting to chew and swallow all the freakin time. I am lucky. I have a great doctor who treats the whole patient. He also cares for my daughter.

I have been crampy most of today and I am not sure if it is something that I snuck in my diet yesterday. I took a trip to the health food store cause I was running low on sunflower seeds and I wanted to pick up a couple of treats for a friend. While I was there, I picked out some snack things that I thought I might be able to eat. I only tried 4 bites of one. The other thing I did different was eat a muffin yesterday and this morning with some flax seed and a couple of berries. I have been trying to add a little bit of fibre each day (as directed by my GI) but there weren't any guidelines so I am guessing and trying to do enough to benefit from without doing too much. I have no idea what I am doing. I am guessing. I look each idea up on the internet and hope that I get it right. I am trying to drink more water.

This is also the first day at 8 pred (40 mgs). So I could just be getting accustomed to a lower dose. Only time will tell.

I was going to have pasta tonight but I might have to settle for some potatoes and chicken just to let things settle. Not sure what to do.

All of my marks are in from the last courses and I earned an "A" in each. I am now getting reading for the next round. The semester actually starts tomorrow. I spent the afternoon printing and setting up my binders etc to get started tomorrow. I have to figure out what time of day I can think. Right now I am not sure. I can't think now. I have to get sleeping better I think. I will try tomorrow morning after the boys leave and while Pook is still sleeping.

I do have to remember that I see my GI tomorrow though for a regular appointment. I am not sure what he will do other than say that he is glad things are moving forward. I want an idea of where we will go from here. I want to know what sort of maintenance plan he is thinking for me. Will there be any other meds other than the 5ASA enema? I don't even know what to ask him. He is so busy and he forgets from one visit to the next or one conversation to the next and then I feel like he hasn't answered the question correctly because he wasn't considering all the information. Grrrrr. I think I will try to make to a list. I am so new to this.

Monday, April 27, 2009

Back to routine

Bathroom: 1 (huge, four days worth, thank you spinach, thank you sunflower seeds, thank you juice and water, thank you being home in my own bathroom. It was large and came in two parts. The first was snake like, and easy. The second was messy and crampy and painful but such a relief once it was gone. I think there is more)

It is good to be at home. I slept last night under my quilt. The quilt that I made. It took me a decade and I had to pay someone to finish it. My mom took it away from me a couple of weeks ago and delivered it to a lady who happily finished the edges with her machine. I still did most of the work and I am thrilled to have it finished. It is so big and blue and I am so happy. It kept me warm, not hot. It was good.

I have to spend some time today updating all my medical stuff cause I have two appointments this week. One with my GI and another with my GP. My GI is happy with the progress of my colon so I have to figure out what to ask and try to get him to suggest a maintenance plan now that my flare seems to be in remission. I need my GP to help me rebuild my strength, manage the ongoing pred effects and anxiety that I am already more than prone to and to figure out how to best care for myself. I also need him to sign some forms for me since I have no more sick leave and must get some insurance money.

I also need to go to the health food store today to get some supplies. I need more sunflower seeds. They really help me when I need to chew! They haven't caused me any troubles and I think I will continue to nibble on them. I will also talk to the people who work there and see if they recommend anything else.

I have to write a couple of very important emails this morning before I go out regarding references for the jobs I am now applying for since we are relocating. I have other relocation tasks to work on as well.

I have two days until my next courses start so I have to make good use of my time and at the same time, Pook was very ill yesterday and I could end up spending the entire day at the hospital again. I just don't know what to expect.

And around all this, I have to rest, eat small meals that will help my keep "moving" and try not to get too stressed!

Sounds like a good plan!

Sunday, April 26, 2009

On the Road

Bathroom: It was complicated. On Friday I couldn't stay out of the bathroom. I just kept going and ended up with diarrhea and mucus and terrible cramps and pain. It was not pleasant. It did stop in the afternoon and I haven't been able to go since. I have urgency and I felt like I needed to go the whole way home.

I got through the interview. The stress was compounded by the new city, the taxi ride to get there (cost me $40) and the fear that something would burst forth from colon critter and interrupt my train or thought or an otherwise pleasant sensory moment. The interview was a big one. It was the sort that leaves you sitting with your jaw on the ground when you get the call, wondering if they really meant to call you. I was honored to be invited to be interviewed. I had to go. After, I managed to get myself lost looking for the subway, but I eventually found it. I took the subway by myself for the first time ever (huge accomplishment for me even if it seems pretty mundain to average folk) and got back to the area I needed to be in for $2.75. Then I got lost again and it took me over half an hour of wondering around to get to my hotel room. Part of the reason that I was lost for so long was that I was so tired and I just couldn't move any faster. As I made my way, I stopped and got some applesauce and juice to refresh me and some band aids for my sore feet.

We had planned to go out in the evening, maybe for drinks or dinner with friends but I just wasn't up to it. I was able to eat some rice and chicken and lie in bed and play stupid games. I couldn't even type email. My brain was finished. Too much stress, too much thinking.

We came home Saturday. I was still not well so we were unable to visit with anyone before we left. The drive was long only because of my constant feeling of urgency and inabiblity to releive myself no matter where we went.

Once home I couldn't wait to drink juice, eat spinach and sit in my own bathroom. I spent the rest of the night in a manic sort of state. I couldn't do anything but watch bad tv and surf the net but I couldn't sleep. At 3:00 I made myself take an Ativan and I still didn't sleep right away.

That was my first road trip with UC. I know it was not horrific. I know that it actually went well. I will be glad when I know what to expect and when I can plan and feel prepared. I really didn't know how I was going to manage it.

And now I would just like to poop. I would like very much to empty my colon. Please.

Thank you.

Friday, April 24, 2009

Accomplishments

Thursday:

Despite long lasting effects of Ativan, got out of bed, packed bag, tidied, readied self and got out of the house. Assisted child in doing the same. Made it through a 4.5 hour drive from one city to the next. No accidents. Dined in a restaurant - they had chicken, gravy and mashed potatoes on the menu! Dealing with stress, eating carefully, and resting were all high on the list of priorities.

It is all for good reason. May be risky behaviour at this stage in my recovery but very necessary.

The performance is this afternoon.

Wednesday, April 22, 2009

Amuck

Bathroom: 0 (urgency, discomfort, lower back pain)

Rather than making any big decisions or announcements based on careful thought and consideration, I have instead allowed my feelings to pull me this way and that way all day. My colon is being a bit rebellious me thinks and it has taken over my mood and run amuck.

I made another roast chicken today. After I strained the gravy I stood over the pan and picked out all the bits of cooked carrot. Those organic carrots were so damn good that after cooking for hours they still had form and tasted like freakin' carrots. Damn they were good. I looked ridiculous. So! I didn't eat the onions or celery okay.

I tried to do some work. I have not been to work since February. I have things that should have been done a long time ago. I have not been able to get to them. I tried today after checking my email. I should not have looked but I did what I felt like doing instead of what was good for me. I got my work folders out and started trying to put this report together. The anxiety started to build and the discomfort got worse. My entire body became fatigued and started to ache. I got up and walked away. Went back to fiddling with the chicken.

While I fiddled with the chicken I felt guilty about the open document on my computer that my colleague really needed and I went back up. The feelings got worse and they dictated my actions. I had to abandon ship. I should not have started in the first place but I had to send something to her. I packaged up everything and then wrote a covering letter explaining that I could not finish the report and what I had done up to that point. Being the control freak that I am, I also wrote up what still has to happen to finish the report (the way that I would do it). I did let it go. I sent it to my boss and my colleague. She will finish it and it will be awesome.

I have one more work thing that I should do. I am immobilized to start. Maybe next week. I can not do it.

I have not read anything for school. I don't want to. I want to eat bad things. I am watching bad t.v.

I finished preparing dinner. I made them all eat roast chicken dinner again. I think they are getting board with it. I adore it cause it is filling, it is tasty and I can eat it! They have had it once a week for at least 4 weeks now. Not much if you ask me. I eat it 3 times a week. I eat chicken almost every day. No one commented. They ate and went away. I snuck some peas onto my plate and ate them. They were green and good. Amuck.

I have to contact a couple of people tonight and prepare a document of a more personal nature. This is important and I need to do it. I need to prepare a proper folder, print out some documents, a map, and do some reading. Amuck, Amuck, Amuck. I am spinning.

I make apple turnovers. The kind that comes out of a can. The kind that you stick a spoon into and the can actually pops open and the dough begins to expand. Can you imagine what kind of crap is in that? I shouldn't have things like that in the house but I wanted to buy an apple pie on the weekend and I couldn't find any. The first week I was sick, I ate apple pie for breakfast. It was the only thing that I could make myself eat. Then the doctor got all strict with my diet and I had to give it up. I want apple pie now. I had to settle for pop and fresh. Oh god. Oh, and I burned them.

I am now shoving plain unsalted sunflower seeds into my mouth. Will this make it all okay?

I picked up my medical diary a couple of times today. I have trouble remembering the days that I can't go compared to the days when I can. I can't remember what I ate yesterday or if I took a multivitamin. I am supposed to write it down. I didn't. Not a word yesterday. Not a word today. It is within reach right now. I don't want to do it.

I think maybe I am angry.

10 Take 2

Bathroom: 0 (couldn't produce a thing this morning. I am being punished for the M&M fiasco that I allowed to occur. I am gurgly and full and I still feel the urgency.)

Good news today inclues a final mark in my masters course. Looks like the final mark will be a nice solid A. I am just slightly sad that I missed the A+ by 1.2 marks (crap that was close) but I am not going to dwell. I am pleased with this result. I worked hard and I did it during my first really bad UC flare. Now I am just waiting for the exam result but I don't expect to get that before May.

I celebrated with more berries for breakfast with yogurt and a little muffin. Keeping my eating on track is important now. I don't need to take too many chances right now as I am tapering off the prednisone. I have to stay healthy for Pook, in order to get back to work and to start the many tasks involved with packing, selling, moving, and job searching. I can feel my heart rate increase just listing all that.

Simplify. For today I will do a little research regarding a job I have an interest in. I will also prepare a piece of work for one of my present coworkers. She has been waiting for this for months as I have been home sick. Short checklists make this manageable. Deep breathing and a little walk on the wii fit board might help too.

I am still trying to think of a good snack for when I get the munchies. Maybe I will go over to Rainbow foods and see if they can make some suggestions. They are so helpful there.

It is also chicken roasting day. Can't live without my chicken!

Tuesday, April 21, 2009

Todays wrap up

Bathroom: 3 (continued feelings of urgency all darn day, some formed fm and mucus, lots of cramping and pressure, very uncomfortable)

Spent the afternoon at the hospital with my little one. Her headache was much worse, she was nauseated, she looked terrible, etc. The nurses were awesome but the doctors looked at their precious images, saw no indicators and dismissed our concerns. And that was how we quickly ended up discussing the usual and very nearly inevitable migraine headache. Grrrrrr. They gave her another medication - which seems to have done nothing but given her diarrhea, poor thing. Once again we had a new resident trying to tell us that she should take Advil the moment she starts a headache and that if she didn't have a shunt migraine would be the obvious diagnosis. I am a little tired of being told this same line of crap over and over again. The good thing is that her surgeon will get the report that she was in and that we want an appointment immediately. We have decided that it is time for a revision. This shunt is not working for her. She feels worse now than she did when we went in this morning.

The ER was not pleasant for me either. I felt terrible and I had to sit on a hard chair and keep my mind on the task at hand. I played stupid games on my cell phone and tried to keep my mind on nothing but my Pook. We were only there for 4 hours. They got us in, through the images and out quite quickly. I can't complain. I will complain about the neurosurgery team that never even came down to talk to us. I will complain about the doctors who don't listen to the patients.

I got through it and was rewarded with a colon friendly dinner when I got home. My poor little one went to bed.

L.B. came home at lunch time. His pain is big today and he just couldn't stay at school. He is planning to try again tomorrow. I hope he is feeling better soon.

I had a bad case of the munchies tonight. I think it was the pred (but it could also have been stress because I am waiting for final marks to come in and with all the illness in this house the air can be a bit thick). It happens every couple of days. I just want to put food in my mouth and chew. I ate a wack of m & m's. Then I didn't feel so well. I tried to make myself feel better by eating some apple sauce. I don't feel quite as guilty but my stomach is too full and I know that was really not a smart thing to do. I was eating for comfort. I was eating to try to feel better and make some stress go away. Emotional eating. I don't think that goes well with UC. I need to find something that I can eat at these moments that won't hurt me or make me feel bad. Any ideas welcome.

My goal tonight is to sleep well so that I can be productive tomorrow. There are a few things that I would like to do. I have an important call to take and some research to do. Maybe I should do some wii fit to work off the m & m's and some stress.

And now I take 10

Bathroom: 2 (urgency, first was not very productive but second was. Formed fm with mucus and some d, lots of cramping, discomfort but glad to let it go!)

On the Scale: 128! Good one. I am putting on a little weight.

Happy Days! I am down to 10 prednisone today. That's 50 mgs. Hooray! Gotta celebrate. I am waiting for the side effects to go away and hoping that I stay in remission at the same time. Fingers crossed.

I seem to have forgotten to take my Ativan last night. I actually felt tired at 1:00 a.m. and just turned off the light and went to sleep. Problem was that I woke up really early, before 6:00 a.m. and couldn't get back to sleep. I have to remember to take the pill. I need more sleep than that.

Once I was awake I was back to my overactive state that I have been in the last few days. I got up, made muffins for the family, emptied the dishwasher and otherwise cleaned the kitchen, cleaned some fruit for everyone, and then started to organize my day. I couldn't stop. I did finally sit to count out my meds and realized that I had considerable discomfort in my colon zone. Time to stop. Why do I have so much trouble with that? I ate one muffin and a handful of blueberries and strawberries. I needed fruit.

I am very crampy now. It leaves me wondering what I should be doing. Should I increase my fibre even more now? It seems that my colon is trying to make and keep things moving which is great so I want to put the best things in there to keep things moving. I don't seem to have had any negative effects to the sunflower seeds, spinach, avocado, or sweet potato that I added this week. I only add one thing at a time and I haven't actually been building on these things. I have my basic foods and then add one thing. Obviously, after my berries this morning, I will be on the careful plan the rest of the day.

L.B. has gone to school today. He was hurting but really wanted to go. He doesn't want to get behind and he just can't stand to stay in bed all day. It was driving him crazy. John has gone in to the office this morning. I have a little quiet time while Pook is sleeping. She has not been well so I am not so sure what to expect when she gets up today. We may go to see the doctors about her. She deserves some answers, poor kid. Maybe she will be feeling better.

Monday, April 20, 2009

End of day

Bathroom: lots of urgency tonight. I have been 2 more times. some mucus. gotta go again.

I am just going to note how I am feeling just in terms of UC and prednisone. I have been neglecting keeping this record and I think I really suck at remembering one day from the next without an aid.

Very rumbly since my exam. I can feel things moving around. I had pain when I went to the bathroom right before the exam and some blood and mucus but it was very small amount. Since then, formed stool with bits and mucus.

My joints are aching. My ankles are the worst. My hips and shins hurt, my upper back between my shoulders and feet are also uncomfortable. Last night it got so bad I cried. I am hopeful that tonight will not get that bad. I will take my Ativan earlier (means soon). Indigestion continues to be a problem every time I eat.

My achne is worse, my face is fat and yes still hairy, my need to snack is ever increasing. I want to stuff my face every evening. Luckily all of the things that I want to eat are on my not allowed list. I am freakin' gorgeous!

Exam day

Bathroom: 5 with urgency but mostly formed. One was mucus and blood but I am stressed from the exam and tired from working so hard over the weekend. I will rest this week I promise.

This morning Pook got up early and went over to hang out at my dad's for awhile. The boys went to their own spaces and left me be to do my last minute studying. I got a couple more hours in but I knew that it would never be enough with this topic. I did my best, packed up my stuff and then drove down to the invigilators office. I sat in a room full of computers, people all around, phones ringing, trying to squeeze information out of my head like water out of sponge in the desert. You can't get it out if it isn't in there to begin with. I am pretty sure that I passed. I did not score any amazing marks but I really wasn't trying to. This was a prerequisite course for my masters program that dragged on way tooooooo long. I just needed it to be finished. It was supposed to be a third year level psych course but it was actually more difficult than some of the fourth year courses that I have taken. I guessed on some of the 50 multiple choice questions - there are no deductions for incorrect answers. I stretched on a couple of essays, knew the answers to two of them well and drew a complete blank on one. For that one, I simply wrote I have no idea. I then wrote a new question and provided a complete answer for it. I just couldn't leave it all empty and blank like that. It probably won't make much difference in the final mark but it did make me feel better to do it.

It was difficult to write the exam. I cramped and felt like I needed to be in the bathroom most of the time. I was releived to get out of there without an accident just because I felt so bad (because I haven't been having much d lately and I haven't had an actuall accident to date). I was worried and stressed. I will be glad as I feel better and get further from this flare.

Pook isn't feeling too well and we may end up at the hospital for her tomorrow. All the more reason to rest well tonight.

Lovely Boy was convinced by us and a poor nights sleep that a day at home was warranted today. He is still recovering from surgery. He had a visit from his brother who can put a smile on his face like no one else can. They seem to do that for each other.

John worked from home part of the day just to be sure that everything worked out alright. He also had to take L.B. to get fitted for a cover for his cast so that he could bath himself in private.

John and I sat together for an hour and just relaxed and just as we were about to get up and get some dinner on, the doorbell went. We forgot about the painter coming. He was here for over an hour. He checked out all the work that was needed, is going to do it all, came up with an estimate and a date to be here. Things are moving on.

I at chicken! Yes really! with some pasta, a little spinach and broth, cheese and gravy. I also ate a couple of pieces of potato. This was all left over in the fridge. I will have to roast a chicken now. It is time.

Oh yes, I also got a mark back. That final paper I wrote for my masters course has been marked. I am pleased. I did much better than I expected 91%. I don't think I can get an A+ out of this one. The A+ plus is likely about 1.5 marks out of my reach. I am waiting now for one more mark. It is for participation on the forum. I am a very strong A student and I am happy with that. This is a good place to start. And I am even happier to have accomplished this while I was so sick.

I am resting now. We all are. Don't know what tomorrow will bring. Have to take advantage of the moments whenever and however they come.

Sunday, April 19, 2009

Snails pace

Bathroom: I seem to be going 4 times a day approximately. Mostly formed stool with some mess and constant feelings of urgency all day long. I feel like I could go sit and crap all the time. I just can't . It doesn't really work. It's just a feeling. I am glad that I am going.
On the Scale: 128!

Yesterday was very busy. Lovely Boy came home from day surgery and all reports were good. He was silly as he came to, he settled in at home on the couch and was able to eat something. His pain started to get bad later in the day and we got the T3's in him a little earlier than expected and with some gravol to help his sleep, we got him through the first night.

I had to take my car in to have the tires changed. I made the appointment some time ago thinking I would be well enough to do it or that I would get Lovely boy to take it for me! Oh well, I went, I also walked across the street and picked up my meds while I was at it and was happy to find that my new script for ativan is 1 mg rather than .5 mg. Hooray. I may start to do some serious sleeping and it doesn't have to go under my tongue, I can just pop this one back. The meds weren't ready and that sucked because they had to look all over to find my big boxes of enemas which should not have been hard to find. I didn't really have the strength to stand there waiting but there wasn't much I could do. I was at their mercy. I leaned on my cart. I stared at them. They met my gaze from time to time as they hurried around. I am not sure what they were doing. What could have taken so long?

The process seems easy.
1. Locate the enemas - check lable carefully
2. count the enemas
3. Check the number of enemas required for the prescription
4. Place correct number of enemas in box
5. print lable
6. have other pharamcist count enemas and check lables

There was much running around and computer screen checking. I strill don't get it. When they did bring it out to me, they appologized for the wait and wanted to confirm that they had given me the correct amount - I said yes of course - but I had no idea...I don't have the prescription anymore, they do! She then decided that the bag was too full so she went off in search of a box for me. I can hardly carry my purse right now I am so freakin' weak so I started trying to get her attention. When she returend with the box I asked her to please not use it. Instead I suggested that she divide the enemas into two bags so that I can carry half in each hand. She looked at me blankly for a moment. Then she looked at me as if she thought I was trying to make her life misserable. I think it was really at that moment that my idea made sense and she was pained that she hadn't thought of it. I do not look strong. I do not look fit. I just spent 20 minutes waiting for the meds draped over my bloody shopping cart.

I got my meds.

I also picked up a multi vitamin since I have not been eating a lot of different things and may be lacking in some other vitamins. I also got some sweet potatoes and treats for the kids.

I dragged myself back to the car dealer and was so pleased to see that my car was outside and ready that I didn't care that no one noticed me and I had to beg for service to pay and get things going. People don't look at you when you look sick and/or like you really need help. Have you ever noticed that?

I got home very tired. I still made potato fries. I needed them. I also cooked spinach. I needed that too. And we all ate a pretty good dinner with the rest of the gang having porkchops while I ate a bunch more of my chicken and gravy.

I spent the evening in bed. We looked at some real estate options. We did go to the drug store for Lovely Boy and we picked up a treat at DQ for Pook. We have to keep these kids smiling.

Today we all had our first barbeque. John had made burgers for everyone so I just mixed up some patties for me with extra lean meat, egg, bread, garlic and onion pouder. I put some avocado on my burger and that made me smile. I finished my sweet potatoes fries too. Everyone else had salad (Lucky!) but I was good and stayed away.

Time to study for tomorrow's exam. Then I will change gears. Time to get my Pook well now that I am on the mend and Lovely boy has had his surgery.

Saturday, April 18, 2009

Them Bones

Bathroom: 0 (back to my usual pattern of feeling like I gotta go and producing nothing)

Lovely Boy is having surgery this morning. His ankle was examined and ex-rayed yesterday and they found it to be in much worse shape than originally assessed. He will be pinned today and re-casted and hopefully he will be on the road to recovery. Poor boy. His pain had been getting worse as the days went by and it just didn't make sense. As step-mommy dearest, I wait at home for some news. He has both his mom and dad with him and they are wonderful people. The hospital is great and I know he is in good hands. Just wish I could hug him.

I am studying today. My exam in cog psych is on Monday. It is the final requirement for the prerequisite I was supposed to complete in December before I started the masters program. It has been a monkey on my back and I will be glad to finish it. I have learned some things from it though and I am actually glad that I chose it and worked my way through it. Some of the content will likely help me in my future studies. It already has actually in the m.p.

I am crampy and gurgly this morning. Uncomfortable but not in terrible-I-don't-ever-want-to-move-again sort of pain so that is good. John poured me a shot before he left for the hospital but I think my colon is immune to the effects of coffee. It is still sleeping. I ate some apple sauce and am having some tea as I get geared up to think. I would really like to move something. I just told my colon that. A little gentle friendly reminder of what it is there to do. Perhaps some mediatation and visualization of the fm slowly being squeezed through the lengths of recently healed colon would help. The power of the mind is amazing. Wish me luck.

My other goal for now is to get Pook through a couple more days where she doesn't want to kill anyone, doesn't get sicker and doesn't let her head explode. She is walking a fine line. She is hanging on by her fingernails but we can't get the doctors to do anything until she actually loses her grip. I have to be ready to catch her at any moment.

Friday, April 17, 2009

Coming down

Bathroom: 2 (mostly enema from last night with a tiny bit of fm)

I am sort of coming down off yesterdays high. I mean that in many ways. I was so stoned last night after getting the double dose of meds that I really felt no pain. I am beginning to feel a little discomfort again. The drugs are really wearing off.

I am also not quite so excited about my remission. I am happy, don't get me wrong, but I don't feel different and I know that I have some more work to do to really be well. I am so weak and tired and I have so many stupid pred side effects to get over as I taper off. I plotted it on a calendar. If I follow the directions I have been given I will finish the prednisone on the last day of May.

In the meantime, my joints still ache, I feel like I have to go but I can't, I want to snack but I can't eat anything (stupid munchies) and nothing tastes right anyways, I'm bored, my face is fat and hairy, I can't sleep, I want my life back... I guess I am kind of miserable.

Damn. Some way to be on Friday night. I will get over it.

Happy thoughts... John is coming home, I am getting better, Pook is hanging out with me, Lovely Boy will get his ankle fixed tomorrow, I want to eat chocolate and I have some that I can eat, it is the weekend and that is enough for now.

For dinner I made a chicken, pasta, spinach and cheese caserole. It was bland but it had vegetable in it so it was fan freakin tastic.

Eleven

Bathroom: just the enema

Eleven. That is how many prednisone I took this morning. Hooray! The countdown begins. I am so happy to be starting this taper.

I am a little sensitive. On the report that the doctor completed he indicated that I could go back to work today. I keep revisiting this in my mind. I am taking this as a judgment by the doctor rather than what it probably is (simply a statement that my colon is better). I know I am too weak, in too much pain and stress to go back to work. I will just have to go to my family doctor and discuss a plan to get me back to work that considers the whole person and not just my evil colon. I will also work on my cognitive scripts and convince myself that no one is judging me and it is okay to take the time that I need to be well.

The week got away from me. I can't believe it is already Friday. I have studying to do for my exam and I am way behind schedule. I will have to cram over the weekend. So much to learn and so little time.

I just had my regular breakfast of juice, tea and ensure. I don't feel hungry but I suspect that I will get a raging case of the munchies later (like I did last night). I think that is from the pred.

So far on the forum I belong to, I have had a few people suggest some foods to start with as I begin to add to my diet. I was so excited when one member suggested avocado! I loves those. I also was told that cooked carrots and peas, sweet potatoe fries, and spinach.

Thursday, April 16, 2009

Another done

Bathroom: Doesn't count - I did two fleet enemas and seem to have cleared a great deal of fm.

My dad and second mom came to pick me up right on time. We arrived to my appointment 15 minutes early and they were running an hour behind.

I chose sedation because I had enough pain just from the enemas. Why feel worse when I don't have. So, we got me all ready (I don't need instruction anymore, I know the drill). The nurse had me sign my papers and then started my I.V. Dr came in and after we talked he felt he would see improvement. I agree but it is good to check. I started to put in the drugs but nothing happened. My IV was a bust. He started another on the other arm and gave me more drugs. Those ones worked right away. I rolled over, slept, woke at one painful point, and then snoozed again briefly. I think the scope was quick. I should be pretty groggy all day since I got the stuff in my blood and the stuff that went into the tissue and will be slowly metabolized throughout the rest of the day.

The good news is that he thinks I am heading into remission and I may now start to ween off the Pred! One pill less every 4 days. I continue with the enemas and go back to check in at the end of April.

Hooray! I am also allowed to start adding more things into my diet. Just need to remember to do one thing at a time so that I can figure out what works and what doesn't. Oh the things I want to eat!

I just had some chicken and potatoes and tea and gingerale. Time for some rest now. I am totally drugged.

I love good news!

Step one

Bathroom: 2 (small deposits of fecal matter that were hardly worth the rush and effort and mess except that it is so good to get anything out at this point and that's enough said)

I got up early with John this morning. He needed to wake up for a flight so my alarm went off at 5 a.m. I went down stairs with him and waited for the taxi. At 8:30 I felt tired and actually closed my eyes and dozed for about 45 minutes. I didn't actually fall asleep but I was close and I do feel a little better.

Pook got up and got herself packed up and organized. She is spending the day with my mom. They picked her up at 10:30. She is glad to spend the day with them but I could tell she didn't feel too well. She has been having a difficult week and it showed this morning. She needed more sleep. She will likely be wiped out at the end of the day. I hope she has a good one.

And that got me to step one. I did my first fleet enema. I know the last time I did one of these was when I was pregnant 14 years ago and about to go for my first colonoscopy. That was when I was diagnosed with proctitis. So I opened the box, lay on the bathroom floor and did the deed. I am glad to be getting cleaned out. I have felt so uncomfortably full for the last few weeks. My rectum hurts though. Ouch. I am not looking forward to the next one.

Urgency

Bathroom: 1 (enema)

All day yesterday I felt the need to go. Sometimes I did. It was messy but nearly formed and a little bit would be expelled and I would be left wishing I could just do the whole job and move on. Every time I stood up, it got worse.

Seems this feeling is to continue this morning. What my evil little colon doesn't realize is that I am going to win this round. In just a couple of short hours, I will insert that fleet enema, cause some major urgency and then maybe experience a few short hours of relief.

I am a little bit anxious this morning. John had to go out of town today. My mom is picking up Pook for the day and my dad is taking me to the aliens for the probing. I am sure it will all go well. I am thinking positive thoughts and hoping for some good news.

Thinking about what I will let myself eat when I get home as a prize... not sure. There isn't much that I can put on the list. I might just have bread with sunbutter. That stuff is pretty yummy and with tea it might be just comforting enough.

Wednesday, April 15, 2009

Negotiation

Bathroom: 4 (urgency, cramping, pain in upper left, fm and d)

I feel like I have to go all the time. I have pain in my rectum as well.

They called back and agreed that I could go ahead and do a prep but it had to be a mild one. I will do a fleet enema tomorrow before the procedure and fast for 4 hours.

That should make us all happy.

She paused before answering

Bathroom: 0 (pressure, pain, cramping, but nothing)

Spoke to John at breakfast about doing a little prep for my colonoscopy. He sat with his forehead resting on his hand. Don't think that means anything. He always does that. He has strange body language. Sometimes that means he is thinking about what you said but most of the time it means he is tired, has a headache, is thinking about his morning, is pondering the weather, or just doesn't want to be engaged in conversation and this is a most excellent way to get people to leave him alone. When he does not answer me, I just move on. Sometimes I get angry inside, but most of the time I just ignore it. After I announced my plan to take the one packet of picko to prepare he didn't say a word. I moved on. 5 minutes later he said, "I am pondering the wisdom of that decision". I was well behaved. Not only did I not remind him of the many times he has said things like "I would just do it (when I was blocked up a couple of weeks ago) and clear things out" or "I'm sure it wouldn't hurt to just eat this". I also considered his words thoughtfully and came up with a solution. I suggested I would call the doctor's office and let them decide.

So I called the office. The receptionist sounded like she had not had a good nights sleep. I was my usual "I am going to be so sweet you won't be able to be anything but friendly with me" self. I don't like talking on the phone, I don't even like ordering pizza, and I don't like calling to ask people things. It takes energy to get myself worked up and ready to do it. Because of this, I am especially gracious in order to make the best of it. I explained that I felt so full, that I couldn't imagine how he would be able to see what he needs to see and that I really would like to do at least a partial cleaning before my proceedure. She paused.

I could hear her thoughts:
"This crazy bitch wants to do the cleans?"
"What is with these crazy colon patients?"
"You just can't win with these people, either they complain about the cleaning out or they make a special request?"

When I joked she didn't laugh. I said I felt the need to present a clean colon. She said that she thought he didn't want me to irritate things further. I said I understood but I was concerned by the fact that I can't pass anything. She agreed to check with him and get back to me.

So now I guess I just wait. I will rest my forehead on my hand and think whatever thoughts I want about the weather, the lack of jello in this house and how she paused before answering.

Maybe not the best decision

Bathroom: 1 (lots of urgency, pain in the rectum, cramps, pain upper left, yadda yadda yadda, what I did pass was fm with a little d.)

We were all a little under the weather. Lovely boy fell on his way home from school (hard to do the crutches over the curbs) and was feeling really tired and lots of pain. Pook was doing her best to try to take some burden off the rest of us but in the meantime was doing too much and feeling very unwell. I made dinner and then barely had enough left to get the kitchen cleaned and get back to bed, draw in Pook to get her talking and keep her from isolating so that I could really see how she was doing. John got home from a full day at work to find the gaggle of us just about at the ends of our ropes. Luckily, he had been home for lunch and he and I had talked, saw the writing on the wall and developed the beginnings of a plan.

While I spent quiet time with Pook, John took Lovely boy to DQ and they picked up a friend of his on the way to come back and hang out. I did eat most of a smal DQ blizzard. I have not felt great since but damn it was good and I can surely use the calories! The treat picked up everyone's spirits and Pook smiled and chatted, Lovely boy hugged us before he slept and John and smiled while he did laundry.

I have this terrible full feeling. It happens lately when I eat and it stimulates what poop there is in my colon but it can't come out. It seems to just sit along the top, stopped at the left upper corner. If it makes it past the corner, it finds a couple more obstacles that hold it back, the last nearly impenetrable one being my actual rectum. Nearly nothing gets past that strong hold. Damn inflamation.

So now I am facing another colonoscopy knowing that I am full of poop and yet they have told me only to fast for four hours. I don't think so. I am going on liquids tomorrow and I may do half of a prep. I need some movement. I can't go through this and then have poop get in the way. Maybe I would feel better if I had a little emptiness inside. I think I will call them in the morning and tell them that I really feel like I need a little emptying. Hopefully they won't mind that. It might also make me feel a little less guilty for tonights icecream cheat.

Tuesday, April 14, 2009

Colonoscopy confirmation

Bathroom: 2 (mostly enema with a little fm mixed in and some d)

The office called and I have been confirmed for another colonoscopy on Thursday. That's three. Since the second week of March. Am I a lucky girl or what? *smiles* As soon as they tell me that they are going to do this, I start to doubt that I need it. Maybe I am lots better and I just don't realize it, or maybe I just have no freakin' idea of what normal is supposed to be like so how can I figure it out? I just don't want to take up his time to find out they didn't need to but I am really tired of feeling sick. I would like to be able to eat, process and expel waste. That doesn't seem like too much to ask for. Right now I am having trouble with some of all of this.

The truth is that I just want to feel better so it is best that I go ahead and have this done. I have to make a few extra plans this time. John is going to be in Toronto on Thursday and he can not cancel so my mom is going to pick up Pook on Thursday morning, my dad will pick me up and take me to the appointment and lovely boy will go stay with his mother for a couple of days. When my mom brings Pook back they will check in with me and I am sure I will be fine. I don't have to do a full prep. I only have to fast, no cleansing. They will do a very fast scope and they won't go all the way to the end. The trouble seems to be in the top left corner and down the left side and at the rectum. I just can't pass things and I still have pain in those areas after all these weeks on pred.

I hope I will be able to start weening off pred. That is my biggest hope. I also want a plan. There are lots of things around here that need doing and I need to know what and when I get back to some of it.

I had another piece of white bread with sunflower seed butter. It actually is good! I haven't eaten anything else since this morning other than tea and juice.

Pook and I just went down and put the chickens in the oven. I am more comfortable when there is fresh roast chicken in the fridge that I can eat at any time. I am roasting two at the same time. I won't run out this time.

Excitement bites me

Bathroom: 0 (urgency, grumbling, cramping but nothing more)
On the scale: don't know, forgot to step on it

The beginning of another week. I am settled back into bed now with my text book, note book, pad of paper for list making (for all of the many things that I intend to accomplish this week) and my tea. I want to do two chapters each day so that I can take the exam next week with limited anxiety. I am not a great exam writer so I always get a little upset but really, I have to work on my cognitive functions here and remind myself that I can do well, that I don't need an A+ and that my goal is to get a decent grade on this prerequisite course that I should have finished in December 2008! I have a 94 in the course right now. I am just a little worried about needing bathroom time etc during the exam. I haven't had to deal with that sort of thing so far.

I ate my usual handful of pills with my glass of juice, bottle of ensure and I had the most amazing cap this morning. The beans we roasted on Friday are absolutely perfect today. So freakin fresh it is awesome. I know many people give up coffee when they UC and I did for the first month but since I seem to be suffering from the inability to pass much of anything at this point rather than dealing with running to expel d. I figure a morning ritual of stimulating the colon won't hurt (until it does and then I will stop).

The rest of the day, I'm not sure. I think Pook's teacher will come today. She probably won't do much else since she did so much over the weekend. She was teary and tired last night.

I will roast a chicken again today. I have run out of fresh cooked chicken in my fridge. I also need to make some jello but I forgot to buy some. John said he would get me some today.

Oh the excitment of my life! Some times it jumps up and bites me.

Monday, April 13, 2009

another weekend complete

Bathroom: 3 (I have done it all today. I had loose stool earlier with mucus and blood, I let go of some fm with lots of pain and cramping and just now after feeling a urgency and pain around my rectum I expelled 3 well formed bm's that looked like slightly large kidney beans with a side of d.) I can only thank my monthly cycle for making things move along as it has today. Fingers crossed that things will continue.

We did go ahead today and do the groceries and then John made a fantastic roast beast. I wasn't able to keep up all the way back to the car but it was good to get out, get a little exercise and have some input in what was coming back into the house. I didn't have enough energy left to help put food away but after a rest I was able to make gravy to go with dinner.

I have been thinking alot about work today. Wondering really when I will be able to go back. I am not financially independent, however, I am at a place in my life that if I need to take more time, it can be managed. There is a lot going on in life right now and if going back to work too soon would be putting me at risk, I am likely not to rush back. I want to go back when the time is right but I don't want to end up going back, having it be too much, taking more time, etc. This has all come up because I still don't feel well, I have no energy and I have another appointment this week to see what is going on. I want to be well. I want my life back. I want to put on a dress, my red shoes and go dancing!

Newest pred side effect to make life a little more interesting? Well, since moon shaped, hairy scaley faces aren't enough, lets just ad some acne, ok? And while I am pretty much not hungry at all most of the day, right after dinner, I get a sugar craving. The only thing that helps me with this is that nothing tastes right, especially chocolate.

Time to read or something. Take some lorazepam and go to sleep.

Monday morning

Bathroom: 0 (gas, pain in left upper abs, urgency)
On the scale: 124

I slept in. I slept until 9! I got up, took my meds and then went back to bed while we waited for the espresso machine to heat up. And guess what? I fell back to sleep! Holy Crap! What a fantastic way to start the day. I have now had my ensure, my juice, my meds and a capucino and life is good.

Pain be damned. I ignore you. I damn you.

It looks like spring out there today. Gotta' check the temperature but I am told it will be a nice day. I do plan to go along for the ride to the grocery store. I am trying to move my body a little bit each day. That way I can even pick out my chicken and jello! Lucky me.

It is also time to start studying for my exam. I write it next Monday. I have completed everything else for this semester and it feels good. When the exam is finished, I will have a week before the new semester starts and things get busy again. That means, rest now, be prepared, and take good care of myself.

We are also going to start the necessary steps this week to getting this house ready to put on the market. We will call the agent, get a handy man in here to do some repairs and painting and pack up some of the clutter. Lots to do.

I think it is time to play guitar.

Sunday, April 12, 2009

The day went on

Bathroom: 4 (blood, mucus, fm, urgency, cramping, pain in back and abdomen)

Spent most of the day lying in bed because I just didn't feel well enough to do anything else. I made some necklaces and watched a movie, played on my computer and finished a book.

Bathroom trips haven't been too enjoyable. When I first went, I thought, Oh maybe I won't need to have another scope next week after all, but then I saw I was bleeding a little again and realized that another probe is in my future, like it or not. It would be fair to say that I am disappointed and a little sad. The good thing of course remains that we will really have an idea of what is going on and maybe that will help the doctor come up with the next part of the plan. I want a new plan that involves less prednisone. I think things will again be improved. Just not sure by how much.

We went out to my mom's for dinner. She made me chicken and rice and potatoes! Everyone else also had beens, peppers, and ham. I appreciated the effort and the special food for me to eat and the not having to do anything. I parked myself on the couch with a pillow, we ate and then we came home because I was done. We had a nice visit and it was good to be out of the house.

When we got home, John hung out with Lovely boy for awhile. He was lonely and still in a lot of pain. I came to bed and Pook went to her room as well. She is wiped from a busy weekend but she has kept her spirits up.

Saturday, April 11, 2009

Easter

Bathroom: 1 (tiny, fm, blood, mucus - pain on left side, lower back, gurgling, cramping)
On the scale: 124

Another better night after ativan put me to sleep. I don't like the feeling of falling asleep when I take it. I occasionally feel like I have stopped breathing and then jump back to my senses in a panic. When that goes away, I start to fall asleep again. But once I am asleep, I stay asleep longer and feel better in the morning. I woke up at 8:30 this morning.

Not feeling so good today. I probably did too much yesterday. I am cramping, have pain in my lower back and left abdomen and noticed a little blood in my one and only bathroom experience today. It could be from the activity, the stress of having all the extra people in the house or because I added to my diet. Hard to say. I will be doing my best to take it easy, no chores today, no outings except to go sit on my mom's couch for dinner and then no friends here tonight.

Pook's friend is still here so it will be interesting to see what sort of shape she is in this afternoon. She better keep her act together! If you have the fun, your not allowed to take it out on the family after.

I haven't eaten any solids so far today. I had a cap (with the freshly roasted beans - beyond delicious) orance juice and an ensure. Not hungry today. Maybe later.

Getting through a busy day

Bathroom: 2 (some fm, nearly formed, urgency and cramping)

I have been busy today. There was so much we needed to do and John could not do it all on his own. I got up with Lovely boy and we had breakfast and then got him settled in the livingroom. I sat with hime for an hour and then showered and took Pook out to get birthday presents for her friend (who is over for the night tonight). While we were out I also went to the health food store and got some sunflower seed butter, apples sauce and organic sunflower seeds. And just to tempt fate, just before we left Chaptes, I got myself a grande nonfat latte. It had been soooooo long.

We got home just as the boys were getting in from picking up the paycheque, talking to the boss and picking up the medications. He was done.

Since then we have tried to rest but the door has been constantly opening and closing with visitors. Pook's friend arrived and they hung out with Lovely boy and his friends for awhile, playing wii and joking around. It was really cool that they all hung out together. John and I also had company when Dr. W. came by and we had caps and chatted. He came to check in on all of us but it was nice to have an adult visitor so John and I claimed him as our own. Now we have all split up. Pook and her friend are hanging in the bedroom, I am resting and the older guys have the livingroom. John has gone out to pick up a pan of lasagna so we can feed all of these kids.

I am trying to take it easy because I am feeling lower back pain and crampy again. It seems that as soon I get my colon to start expelling any wast, it comes with urgency and pain. I was sort of thinking that if I started going maybe I wouldn't need another colonoscopy this week but John said, "Oh your getting scoped". He wants to be sure they know what is going on and if things look good I am so hopeful they will start to taper my pred.

Now, my next task for today is smelling and looking at lasagna and not eating any. Damn.

Ativan is better

Bathroom: 0 -couldn't move a thing this morning
On the scale: 123.5

I slept. My GI suggested that I give up on the traz and try ativan for sleep. He called in a script but it just so happens that I had some in my purse for the moments when anxiety proves to overwhelm due to environmental factors such as stalkers, meetings with angry people or temporarly misplaced files. Anyways, I took an ativan around midnight, fell asleep quickly and didn't wake until lovely boy came by looking for T3's at 6:30. Even more amazing, after he was tended to, I went back to sleep for 2 hours! I have not been able to do that since I started Prednisone over a month ago.

I at toast and apple sauce for breakfast! Hooray. This is a new addition to my terribly limited diet.

Lovely boy has a broken ankle. Looks like two broken bones actually in his left ankle. No driving for at least 2 weeks, has to sit around all weekend, keep his leg elevated and get lots of rest. The poor boy doesn't seem to be enjoying his T3's. They keep coming back up. As if he didn't feel bad enough. He has to go see a surgeon on Friday to check if it will need a pin. For now he is feeling bad that he has to ask for so much help. We will have to get him some games and try to keep him company. He is usually very social and active.

My stomach is gurgling. I am hoping for good things today. I am planning to take Lindsay out to pick up her friend. I haven't attempted anything like that it quite awhile but with two kids needing things today, I feelt he need to try to be helpful and to contribute. I will rest the remainder of the day. I will be a good girl and eat my gruel later.

Friday, April 10, 2009

What a day

Bathroom: 1 (small fm and mucus, messy)

So I ate pasta and chicken for lunch after getting the green light from the doctor. It was good. I rested for awhile and then John and I went to the kitchen to roast some coffee. We have been out for awhile. I really wanted to roast and have a fresh shot for my cap over the weekend.

While we were roasting, we ordered more green beans, sent an email to the real estate agent and then got a call from my dad. He is home from his wintering in the south and wanted to drop by. So much activity was keeping me from even thinking about how I was feeling. They came over, had coffee, checked in on all of us and then ventured back into the sunny afternoon.

We were just about to clean up and take a rest when the phone rang again. Not good news. Lovely boy had an accident playing football and the ambulance was on the way. We jumped in the car and headed over to the park. He was lying on the field and the ambulance was there but they couldn't move him until the drugs started to help the pain. John left with the ambulance and I came back home to wait with Pook. They just called and are on the way home. His ankle is broken and he has a cast from toes to knee.

On good Friday

Bathroom: 1 (tiny mucus and fm)

Doctor just called to check in. I was surprised to hear from him on Good Friday. Pretty cool. He is going to call in a script for me to pick up tomorrow so that I can get a little more sleep. He also wants to have another look inside since I am not easy to evaluate. He is hoping that things will be improving and that I can start to taper the prednisone. Oh that would be soooo good! So, it looks like I will have to go in for another scope near the end of the week and then we will be able to do a plan.

Really good news is that he suggests some toast and pasta and even agreed to Apple sauce! What a big day this will be. I am so happy to eat fruit. Even the apple sauce kind. I am about ready to rip the cupboards apart to see if I can find any in the house but I don't think there is any here. I want tea and toast with apple sauce.

Really early start

Bathroom: 1 (tiny little ball of mucus and fm)

Woke at 5 a.m. when John started some martial arts moves on me in his sleep. He came at me fighting! His knees were moving particularly quickly and made perfect contact with my left knee right below the cap activating my reflex. I have been feeling like kicking ever since! As you have probably guessed, he went back to sleep after ensuring that I was ok. I on the other hand lay in bed with my eyes open for an hour before giving up and making tea. I have been sitting here playing stupid games on facebook ever since. I got up at 7 and made a second cup of tea. The CBC is playing gospel music which is adding to my sense of being in my own personal hell on this Good Friday morning. I am not religious. I can not understand love songs for god. The radio is on the other side of John and while I don't want to listen to anymore god songs, I don't want to sit in total silence either. I am making due.

Thursday, April 9, 2009

No Relief

Bathroom: 0

The evening has just continued as the rest of the day. I didn't feel any better or any worse, I didn't have any energy but I was bored beyond belief.

Pook had company and seemed to have a really good time. She was silly and laughing and then absolutely nasty (indirectly) after her visitor left. I am sure tomorrow will be fun with her.

Everyone enjoyed pizza for dinner. I had congee with an egg and it was good too.

My mother called and invited us to dinner on the weekend. I couldn't commit because of how I am feeling but I have agreed to consider dinner on Sunday. I will let her know closer to the day.

Tomorrow we plan to roast some coffee, do some laundry, make some music and just relax. Hoping it is good one.

No call

Bathroom: 2 (small loose fm with mucus)
slight temp - 99.6

So the doctors office didn't call back. I was going to tell them that I was feeling very warm and did start to pass a little fm this afternoon. It would have been nice to hear back since we are starting on a long weekend but I guess I can just take this as no news being good news.

But I feel terrible. Yuck. I'm hot, crampy and my hips hurt.

And damn I am a whiny little baby sometimes.

I am beginning a good 'hate on' for prednisone as well. While I appreciate all the good things that it seems to be doing for my sick colon, I am not so damn pleased with all the other freakin' things it is doing. Every morning I find a new bunch of nasty hairs growing out of my face. My skin is nasty and scaly and I am quite sure that my face is becoming rounder by the day. In addition, my joints all hurt, I feel like the bones in my feet are going to break and while I am nauseated and uninterested in eating, I have started to crave food - I am not hungry, I just want to eat and the eating makes me more uncomfortable. AAAAAAAH! I am sure there are more things that are happening to me but I can't even concentrate long enough to list them.

I am bored.

I want to be well. I want my life back. I want to go out and dance and eat in a restaurant.

Called the doctor

Bathroom: 0 (not a thing today)
On the scale: 124

I remembered this morning and called in my update to my fabulous GI. I left all the details with the lovely lady who answered the phone and now I wait for any additional instructions. It was good to be able to share all the details with someone who didn't receive them as crazy or complaining! I was able to make her laugh about how my feet felt like the bones were breaking and how all the nasty side effects from the prednisone were turning me into a man. She will get to me at some point today and maybe I will be allowed to add some baby food fruit or something to my poor diet. Fingers crossed. I need a new snack.

This morning I couldn't eat but I did drink an ensure, juice, tea and a shot of espresso. I was hoping the coffee would stimulate my colon into letting go of some wast. No luck but it did seem to make it act up a little so I will continue to have coffee in the morning unless I am told not to.

Not sure how I will spend my day today. There are lots of little projects that I could take on. Not sure if I will. I might start studying for my exam (that I have booked for April 20). I might not. I might just do nothing again but I know that I will be nuts by the end of the day if I do that. I think I might like to knit something. Maybe I should get some wool over the weekend (and some new beeds). Maybe a little research on probiotics. I signed up for the ensure website and I think that qualifies me for some nice coupons! I like coupons.

I started reading a book yesterday. I read half of it. When I am in the middle of a course I can not read anything for pleasure so it is one of my favourite things to do right after I finish a course. The book is called Madness. It is about a woman with Bipolar. This is personally and professionally relevant material to me but I am reading it for entertainment. I have a stack of books that fit this same bill. The next one I read is one that I got for Christmas about a teacher with Tourette syndrome.

Wednesday, April 8, 2009

Trying to be

Bathroom: 1 (mucus, salofalk enema and blood - small)

I have had a strange sort of day so far. I haven't felt well but it has been different. I am crampy and uncomfortable, I keep overheating and getting sweaty, and I don't have any energy at all.

Just sitting up to do some beading was too much and I started to sweat. I am tired of lying here but I don't have any energy to do anything else.

I was hungry for a little while so I had an ensure and then half of a chocolate bar. I am thinking about my dinner already. I look forward to eating dinner. It is the time of day when I am least likely to feel nauseated and I eat something substantial and get to chew.

John's home. He got a coffee delivery today. I am going to have some tomorrow. I asked him to play a little game of lets irritate the colon into action but he just had a shot before he came home.

All stop

Bathroom: 1 (mucus and blood, very small)
On the scale: 123

So, my system seems to have stopped up again. I am not going and the pressure is building. I have been drinking tea hoping it would stimulate some evacuation. I might try coffee later.

I just prepared a leave form for work. It sort of blows me away that I have been at home sick for so long. I have never missed this much work, or been sick for so long. I feel sort of detached from everything. Life is going on but I am sitting still.

I ate yogurt. Just now. I ate it so that I could say that I ate something. I wasn't hungry but I know I should put something in there. I am trying to increase my fluids today. I don't think I have been paying enough attention to my input the last week and since my weight has dropped a little again, it deserves some care. I asked John to kick my but if he sees me without a drink.

Pook is up early so she can be ready to go to my mom's. She is going to enjoy a little extra TLC and dinner out. I am happy that we have our lovely cleaning lady back this week. She couldn't come last week and I really noticed the difference in the house. She does such a good job and it makes me so happy!

I am taking the day off. From everything. I am not thinking, tidying, organizing or preparing. I am even having trouble typing.

Tuesday, April 7, 2009

A long day

Bathroom: 0 (not that I didn't try but my colon refused to give it up)

I spent pretty much the entire day reading and writing. It was tiring and I have to admit that it was not the best that I have ever done but considering the situation, I am okay with the final product. Being sick makes academics difficult. I just have to do what I can. I sent it in at 10:00 p.m.. I had a couple of hours to spare but I could not look at it any more.

I roasted another chicken today as well. I was running low and having the chicken in the fridge really helps me to get something in everyday. Some days I could just not bother eating at all. I ate chicken and mashed potatoes with gravy for dinner and I heated up a little bit of spinach and ate that with a wee bit of lemon squeezed over it. Damn it was good. Hope I don't regret that tomorrow.

Pook did school today and then even finished and sent in some homework. She is still feeling really sensitive and tired. We are hoping for a better day for her tomorrow. She is going to spend the afternoon with my mom and stepdad. She will come home all tired but so happy from some nice spoiling. We are going to plan some fun for her on the weekend. The poor kid needs a life.

My pain has remained pretty bad today since nothing is moving. I am hoping things will get going again tomorrow. I think I was supposed to call in to the doctor today but I was so busy with the paper that I didn't do it. I will call tomorrow. I have to write down what I am going to say because I forget the important details when I get him on the phone.

Looking forward to tomorrow. I plan to relax. No work. Maybe I will read or have a bath. Maybe I will watch a movie or make some jewelry. I won't study. I won't work. The day will be mine.

The last day

Bathroom: 1 (just enema and mucus so far this morning and nearly unbearable pain in my lower back)
On the scale: 124

Woke up bright and early at 7:00 a.m. after a glorious 4.5 hours of sleep. Wow. What a good one.

Went to the bathroom and didn't have to let any d go. I just sat there for awhile, pushed and produced a little enema and then got up to leave. I will have to wait a little longer I guess. Maybe I will go for a jog around the block to get everything moving! That sounds like fun.

It is snowing again this morning and in fact it is kind of cold. It doesn't seem like spring at all and the number of accidents reported on the radio this morning would attest to the unusual conditions. Drivers who just had their snow tires taken off did not have a good drive into work. I won't be going jogging after all.

I am writing again. No surprise. The paper goes in today. I am at the "stick in what is needed and get it out of here" phase. This is when I go a little beyond caring and just want it to go away. I have to keep myself from performing premature release of the paper. There is always time for one more edit. There is always one more typo to find. I really have to finish writing the damn thing.

I think I just dropped a piece of muffin in my purse. I have this muffin sitting here. It has been here since 9:00. I couldn't eat it. I felt terrible this morning and couldn't make myself put more than a couple of mouthfuls. I brought it and my tea and a yogurt upstairs in the hopes that my natural desire to snack would kick in after I sat here for awhile and I would be able to consume it. I have eaten more than half of the muffin and I ate the yogurt. I am really trying to eat more than one time each day even if I am nauseated.

The new teenager just came in to give me a little bit of grief. She did too much this weekend and has been all sensitive and difficult since. Today it is a clothing issue that we get to discuss. I am having a fun day so far.

Grrrrrrr.

Monday, April 6, 2009

Still writing

Bathroom: 2 (diarrhea, mucus and lots of pain and urgency)

Despite the pain, I am thinking that things are improving. I am actually passing fm. The cramps in the left side bring tears to the eyes but I am sure this won't last. This has to be progress.

I went back to broth, chicken and rice tonight. I need to go easy. I am supposed to call the doctor tomorrow so I will find out if I can change the diet at all. I am hoping to add some spinach to my broth and some cooked fruit to my days (even baby food fruit). If not, no big deal. I have another chicken to roast tomorrow and I will love my broth because it doesn't hurt me as much.

Pook isn't having her best day. She seems to have worn herself out over the weekend. She is really sensitive.

John is enjoying some time in his new music studio that we put together yesterday. It is a good space with room to breath and move and much less reason for noise concerns.

That's enough chatting time for me. Time to get back to work. Lots to do and only a day left to do it.

Oops, Forgot to post!

Bathroom: 2 (mucus and fm. Hooray. The exit continues.)

The first thing I saw this morning was snow. Yup. It was snowing and it kept coming down and actually hung around a little until about an hour ago when it switched to rain. Thank goodness for the rain.

I am feeling good enough today to actually carry on a conversation with someone and not rip their head off, to try eating more than once today, and to write a few words on the paper that is due tomorrow. I think things are looking up.

I am writing my paper. I have been adding all morning and I am making good progress. I will have to work pretty much right through now to get it done but that's ok. That's really the only way I can do these things. A special young woman that I know has located the final book that I need to reference and she is delivering it to me on her way home from work.

I ate a muffin this morning (most of it) and have had terrible heart burn ever since. I am just proud that I ate something this morning. I haven't been eating anything solid except for dinner.

Crazy thing. I am craving cheesies. The crunchy kind. I think it is the strong cheese flavour and the satisfying crunch. I am not hungry, I just want to chew again! I am always going on about chewing.

Chris has posted on his blog that he will be sharing pictures of his diseased colon. I can't wait to see them. I am so curious. He is so brave and it is awesome that he is sharing so much of this journey.

Later.

Sunday, April 5, 2009

End of the day

Bathroom: 2 more times! Yes more of the same. There is even a little pain relief involved now. I smiled again. Damn, I might even have laughed.

Along with my little movements, I seem to have passed a cup of stress and anxiety and I am in a much better place emotionally.

I am not tired. Still have that problem from pred. But don't have enough energy to actually do anything so I am sort of in limbo. I want to be quiet so that John can sleep. Probably means I should grab one of those articles off the pile that will help with paper tomorrow. Do some stupid reading and feel even better about myself.

And then it will be enema and sleep time.

Took what I wanted

Bathroom: 2 ( yes really! 2 tiny little bms!!!!) Not enough to relieve the pain, just enough to give me hope. Things are finally starting to move. I think I actually smiled.

I took it easy today in terms of holding myself responsible for everyone and I pushed myself in ways that I wanted. I got the lovely boy working (I paid) and he moved many different things around the house for me, mostly from den to basement and he took apart old pieces of furniture that will go out in the trash. He worked hard even thought he felt sicker as the day went on due to his celebrations out with the guys last night. This has freed up some space and decluttered some of my world. John now has some space in the basement for music that will allow him to pump up the volume and get some time alone and away from everyone! Nothing like a little peace and solitude.

There is now room in the office to do some work. I can organize in there to my hearts content on Wednesday (post paper) and make sense of all the odds and ends, get pens together, the paper and do the caligraphy supplies some order.

I am so hopeful about tomorrow now. If things keep moving I might actually be able to think and create something brilliant just in the nick of time for my final paper.

I ate steak tonight. Not lots. Just a small portion. It was well cooked, no veg, no spice and I cut off all the fat. It was good to eat something that wasn't chicken. It better not get in the way!

Pook spent her afternoon out with her cousin doing some shopping with the birthday money. She seemed to pick up a little bit of everything and was pleased with her purchase. But man she was tired and cranky when she got home. She gave me that look. The one that teenage girls give their mothers. I called her on it and it quickly disapeared and she returned after a bried respite in her room filled with her usual good humour. She is tired.

We had company briefly today as well. Friends came over to visit for an hour. They were great. They came over had tea, chatted and distracted and then left an hour later. They didn't stay too long. They were excellent guests. They left and I went to bed. John took the lovely boy out and came home with groceries.

John is doing music things now. I am in the basement with him. I am not sure if this defeats the purpose of moving down here but I don't think he minds the company right now. I won't stay all evening.

Short on sleep

Bathroom: 0

I fell asleep around 2, woke up around 6. The pain isn't much better. Actually it isn't any better. My back is really bad and all my joints and muscles are aching. There is not a part of me that is comfortable. My stomach is gurgling and I really wish I could relieve myself.

This is not a good day.

Saturday, April 4, 2009

Quiet today

I haven't been well and I had some things that I had to do.

It has been a hard one and I have no one to turn to today.

I have been weepy and in pain all day.

Here is hoping for a better tomorrow.

The weekend is here

Bathroom: 1 (just enema)

I did not sleep too much last night. I guess I can't expect two good nights in a row. I fell asleep late and woke up early. I lay in bed trying to keep my eyes closed for about 40 mins. before I gave up.

My shoulders and ankles are very sore today. I am really aching.

It is still raining. It is really grey and dreary.

Premier League is back today so at least the sounds on the tv are as they should be.

I'm going to do some more writing today and then we will be taking Pook shopping so that she can go to her little cousins birthday party this afternoon. I will not be able to stay.

Otherwise, the usual. Drink plenty of fluids, stay in bed, be a good girl.

Friday, April 3, 2009

I want

Bathroom: 1 (small salofalk, mucus and a little fm!)

This is a rant. Excuse me.

I want spaghetti with meat sauce. I want a huge plate of nachos, with sour cream and cold beer. I want an avocado, tomato an cucumber salad. I want curry. I want a burger, fries and a shake! I want the chicken fried rice that John made this week. I want ice cream and cake. I want buttered chicken and na'an. I want enchiladas. I want a big fat steak and potato dinner. I want to eat a bucket of popcorn with melted butter served with a gallon of pop. I want to eat chocolate and enjoy it like I used to. I want lasagna all messy and cheesy. I want to eat chips. I want to have cheese fondue and a nice crisp white wine. I want ribs that fall off the bone. I want home made sweet potato, butternut squash and white potato fries. I want spinach salad with almonds and cherry tomatoes.

Ok. That's better.
I am not hungry. I do not want to make myself feel worse. I will not indulge in any of this. I just needed to say it.

I had another delicious bowl of broth and rice and chicken for dinner and I am satisfied. Later, once my stomach settles (I have bad heartburn every time I eat) I will enjoy an orange popsicle. And still later I will have a little gingerale. Why? Because I can.

Rainy afternoon

Bathroom: 1 (tiny enema and mucus)

My sister came over on her lunch hour and brought me some juice. I watched her eat. She really enjoyed the curry that John made for dinner last night. It makes me very happy when people enjoy their food. I had an ensure. I am trying to back off on my poor colon. I will be eating broth for dinner again.

Other than the brief visit and the couple of other times the doorbell has called to me, I have stayed in bed. My step father came over and picked up Pook and she has gone to hang out, swim and hopefully enjoy a little grandparent spoiling. My mom and step dad are so good to her. This has also let me feel a little less guilty about the amount of time that she spends alone because I am not well enough to do much with her. I know my guilt is not founded. My daughter is happy and we have a good relationship.

I have started to write. I have actually d0ne some! Once the process gets started it carries itself quite well. I am not able to stay focused for as long as usual because of my pain but I can get things going. I just keep stopping, surf for a few minutes and then go to the next point in the paper. Slow but steady will win this race.

It is a very rainy day out there. The sound on the windows and roof was actually very soothing and I know it is washing away the last of the snow. Bring on the daffodils.

Friday mornings are still good

Bathroom: 1 (tiny usual mucus and enema morning)
On the scale: 124

Even though all the days seem to be the same right now and I am losing track, I still feel like Fridays are special. Hooray for the weekend!

I slept! I fell asleep around 1:00 a.m. and woke up at 8:00. Holy Crap! That's great!

This mornings aches and pains include a knee that hurts enough to make me limp, sore eyes, and cramps. The gut pain has shifted a little from yesterday. The worst of it is no longer on the lower right, although it does still hurt on the right side, it is now upper left that is most painful. I think that might mean that something I ate is trying to get through. I have the lower back pain as well.

Today is the day. I can not ignore the paper anymore. I will have to start writing. I am waiting for the boys to get going and then I will start using my usual method. I go through one resource at a time and place quotes and comments directly into the paper. Once I have used up all of them, I start writing around the quotes. I know this works for me. I just need to start. I should actually have a couple of hours to myself this afternoon. The stillness in the house should help.

Pook is going to spend a couple of hours at my mom's this afternoon. They will have lunch together and then probably go for a swim. My sister is dropping by here today to eat her lunch.

I have to remember to call in my meds today.

Thursday, April 2, 2009

Not really any better

Bathroom: 0 (I spent some time in there trying to will something good to happen, but I was not able)

I have tried all day to get some school work done. I did some reading, worked on my outline but really didn't write a word. I just couldn't concentrate.

Both sides hurt today and it hasn't eased up at all. I stayed in bed until John got home and then we went for a very short slow walk around the block (we are having an unusually warm spring day today). I thought the movement might help the movement. It was a good theory but it didn't pan out. My joints all hurt (ankles, hips, shoulders even neck) and my cramps are nasty. This has not been a good day.

I only ate some chicken broth with a little scoop of rice and a tiny bit of chicken in it. It is the tasty stuff that John brewed up for me last week. I had some in the freezer. I am going to try more fluids and less solids for the next few days. At least that is what I think I am going to do.

I have packed up my books and I am taking the evening off. Hopefully I will rejuvenate and feel ready to go in the morning.

Oh ya, just one more time, stupid drugs. I think my face is beginning to round out.

Grumbling

Bathroom: 0
On the Scale: 127

Excuse me for a moment while I complain:

I do not feel good at all. My colon hurts. I am cramping everywhere and the pain is on both sides this morning. I think I went to far with food the last two days so today I will step back and go for more fluids and less chewing (sad but it has to be).

My joints really hurt today and so it is hard to find a comfortable position. I have pain in my upper and lower back and even in my chest.

I just pulled out more hair from my face than any woman should ever have to deal with. Stupid medication is turning me into a freakin' man.

Thanks.
I think I am done for now.

Thursday

Bathroom: 0 (not even the enema this morning, it has simply disappeared)

It is going to be a beautiful sunny spring day today. I am hoping to get outside for 10 minutes this afternoon for a little walk if I can do it. I love spring. So filled with hope.

I was tired last night! Yes I really felt tired and so I took my little sleeping pills and my enema and packed it in earlier than usual and I actually fell asleep. That was around 1:30. I woke up at 5:30 and didn't really go back to sleep after that but I lay here sort of floating until 7:00. Even though I didn't sleep right through, I still feel like I have had a successful night.

My mouth doesn't hurt as much this morning.

I am going to start writing a kick ass paper today.

Wednesday, April 1, 2009

Some success

Bathroom: 1 (tiny bit of mucus and salofalk)

I have experienced a little success. I completed two pieces of work for school that must be done by Tuesday. One was a self-evaluation, the other an interview. Now I just have to write the paper. Oh, is that all? Ha! Tomorrow.

I ate more chicken and potatoes for dinner. Still good. Caused a lot of cramping but I have to eat something. At least I got to enjoy the chewing again. I love chewing. I think tomorrow night I will opt for chicken and rice in broth. I should really slow down a little since nothing is coming out.

We had company tonight. What a lovely distraction. They are good friends so when I couldn't stay up any longer, they all just came upstairs and hung out in the bedroom. They were lovely company and it was so good for all of us. They passed around my new guitar, shared work, school and family stories and put a big smile on John's face (mine too).

Time to watch my boyfriend George on the Hour.

My Mother

Bathroom: 0

My mother is standing next to me right now. She is ironing. She likes to iron. She is ironing everything that she takes out of the dryer. She is doing my laundry. Life is sweet!

I just spoke with my doctor. Gave him the update on my condition and he said that I should continue to do what I am doing. As long as the blood is not increasing he is not worried and thinks that things are going in the right direction. He assured me that the ulcers in my mouth would clear up when I improve. He wants me to continue with all the medications including the enemas. So I am taking this as good news! I am to call in again next week.

I drank an ensure. That was the best I could do today. I took my probiotics. I am not hungry.

John took Pook to the dentist. She is having some work done. She was a little aprehensive since she has never had more than a cleaning. She needs to have one of her molars scraped because it got a little sticky and then they are going to seal them. I think it is good that she went with him. He will be supportive but she will also need to be a little more self reliant.

Manly yes and this ain't no joke!


Bathroom: 0 (just let the enema out this morning, nothing else)

When I woke up this morning, my right arm was up over my head and my nose was closely placed to my underarm. Yuck. I smell like a man. This is one more thing to add to the list of changes in my body. I don't usually smell much at all, but when I do, I don't smell quite like that. I guess it could be the change in diet, the prednisone or the disease itself. I went right for the shower.

My mouth hurts this morning. The corners of my mouth are aching and they hurt alot when I open my mouth. Inside there seems to be the beginnings of some ulcers as you may be able to see in the photo. I am not happy with the picture, it is not my best side, but it does show the little ulcers coming up inside my lip. The others side feels worse but the pictures aren't as good. My hands aren't so steady this morning.

My mom should be arriving any moment.

Happy April Fools Day.