Sunday, May 31, 2009

Redefined

I have not called the doctor.

I did some reading, I connected with some friends with UC and I decided that I was going to wait.

What I needed to do was clearly define what symptoms would require action and what that action would be. I developed an action plan! Based on my plan, I don't need to call the doctor yet. I am not bleeding and I am not suffering from diarrhea. So, if I don't get to that point, I won't have to stop my tapering or make that emergency call.

I am having pain in my rectum so I have increased my use of enemas to twice daily and I am using my suppositories again. Every time I go to the bathroom I put in a couple. I have also spent more time resting. It seems that this three component approach is helping. I don't know if it is one or all three things, but I am not in nearly as much pain and it is not all day anymore. It has really decreased.

So I will continue on with this plan. Next week we will be in hospital. My daughter is finally having surgery. We are hoping that she finds relief from her pain. I will have to be careful that I remain mindful of my own health while I support her.

The week after we go house hunting.

After that I am off to a new job. I will be well.

Wednesday, May 27, 2009

Avoidance

I am avoiding what I know I have to do. I need to call my G doctor. I know that I am continuing to taper off the prednisone and things are not all okay. I am burning and irritated and uncomfortable. There is pressure and a feeling of urgency. It stings.

I also can not stand any more time on predinisone. I am a basket case. My mood swings are higher and more difficult to deal with every day. My poor family have had a hard time dealing with me. I also have no stamina because of my swelling and joint pain. And then there are all the other side effects like acne, hair, moon face, munchies, sleep disturbance and my teeth are so sensitive. I just can't stand it. I need a new drug. I can't do this one anymore.

For now I am being very careful with my diet, I am spending a lot more time in bed again and I am using my enemas twice a day. It's got to help. I will call tomorrow. I promise.

Sunday, May 24, 2009

Absent Minded

Bathroom: Variable results. I usually go once a day if I take a child's portion of Metamucil. If I don't, I don't. Some days I go 4 or 5 times. Some days I don't go at all.

I can't believe that I completely forgot about this blog and stopped posting and reading. That is not like me but since I have been sick I have not had all of my brain cells working properly. I am not sure but I am more likely to blame that on the medication rather than the UC. The truth is that I got caught up in some unusual and stressful situations and was not following my routine. That was all it took. And I disappeared.

I went to visit a friend for a couple of days and while I was away, I interviewed for a job. This was a second interview for a job that I really wanted and thought was out of reach. I flew by myself for the first time ever and spent three days away from home eating grocery store prepared chicken and dealing with the big city, the big job and the big stress. You can guess the effect that had on my health.

But wait, there is more! Then I came home and pepared to take my daughter to the hospital for at least three days during which she was scheduled to have two brain surgeries. She has a shunt that doesn't seem to be working correctly. They need to test it and explore it. At the last minute they cancelled it. We went back home. We were disapointed and upset. She is bedridden.

For the next week we worked to get the house ready to sell. It was hard work. We ate out often because of the fatigue, the celebrations and the house viewings.

On Thursday I was offered the job I dreamed of getting.
On Friday our house went on the public market and sold in just a few hours.

I have been resting ever since. I am back on my home-prepared chicken.

I have been fighting with my colon. It is not happy and the pain this weekend has been pretty bad. I am paying for my adventures. My pain is a burning and stinging in my rectum and most of the time I feel like I need to push out my colon. There is a constant feeling of needing to relieve myself but there is nothing in there about to come out. I think I am all swolen. There is no relief.

I am still taking my medication. I use the salofalk enema at night and I have also used it during the day the last two days. I also take the same medicine by mouth in the mornings. I have stopped tapering off the prednisone. I was starting to have some minor signs at 30 mg but I went down to 20 before holding. I have been at 20 for 11 days. I am not getting better but I am not willing to go back up. I will call my doctor tomorrow and let him know. No more prednisone, it makes me completely crazy and miserable. I need something else.

Wednesday, May 13, 2009

Get it and Got it

I have been traveling. I have been carefully trying to do things that need to happen for the future without overdoing it or stressing myself out too much. I sit presently in my friends dining room in a city far from home. She makes me comfortable.

I had an interview this morning. There was a new element of stress involved in the whole interview process because my colon had to come along and it isn't behaving itself, at least not as well as I would like. It has been very noisy for the last two days but it is not letting anything pass. I have been good, sticking only to the foods that I have already established as acceptable and ok for me and I stopped the Metamucil for the two days before the interview just in case. It went very well. I did a good job and I think I provided them with a fair and fabulous representation of who I am and what I have to offer. Hopefully, I will be a good fit.

Now I have a day to relax before I travel again. I couldn't drive. I can't concentrate or remain seated for that long. I flew. It went well. No emergency bathroom trips. However, I haven't had any bathroom activity since I left home and that isn't so good. I need to go! I have some increase in pain and tomorrow is another drop down one pill day. I will be down to four. I can't wait to be off them.

The great thing about my visiting is that my friend totally understands all of this. She was diagnosed with UC a couple of years ago. She has battled with the meds, the symptoms and side effects and all the other things that go along with it. It is nice that we both get it, but incredibley strange that we both got it. This is taking sharing to a an all new and strange level. She is in remission right now and is eating as she pleases (well, she is a vegan, and so her diet is already limited in my opinion!). She is dealing with nasty medication side effects though.

When I tell her what my bm looked like the other day, she doesn't ask me why I looked. Instead, we take a moment to discuss how we now study our bm's even more than we looked at our children's and how important that has become. We laugh. When I say I had to run to the bathroom she knows what that means from her own experience and we can share our moments of total defeat and success knowing how the almighty colon can suddenly rule your life as your strive to nurse it back to health, and keep it firmly attached to your body. We know what we give up, what we volunatirly sacrifice for the colon.

Saturday, May 9, 2009

P(red)MS

Yesterday I completely lost my mind. Usually someone with the ability to self screen and the discipline to choose when to speak, to whom, about what and in what way, I rarely lash out, and I rarely 'react' in haste. I have angry moments like anyone else, but they are rare and I usually find them much more traumatic than those around me. Normally, I am an underinflated balloon that can have a sharp needle pressed against it without bursting.

Yesterday I woke up feeling besieged by the many responsibilities and tasks of the day ahead. I got up and started to cross things off the list. While I didn't feel angry, I did feel stressed and anxious. It would be fair to say that I was humourless. Oblivious to the moods, wants and needs of the others in my environment, I focused on each task and each of my basic needs so early in the morning. I was overinflated and wouldn't withstand contact with the terrible popcorn cealing that is in nearly every room in our house.

My resting zone was on the red line (or should I say the pred line). In an efort to protect myself, to keep myself from becoming truly hysterical, all threats had to be dealt with quickly and efficiently. There was no time to be tactful, no extra energy to explain, just a flash of dark eyes, a look that meant death and an order barked in the direction of anyone who was about to push a button, anyone who had already strayed into the danger zone or anyone who seemed oblivious to the state of my mental health.

This reaction to threat, while self-protection, was not helpful. It triggered a negative response that was much worse than the original trigger. My left foot was placed firmly atop a bug to squash it and it went right through the floor.

I realized today that this wasn't just a pred mood swing. This was me on PMS on Pred. Pred is not responsible for everything that is wrong with me or my life. It just makes everything worse.

Wednesday, May 6, 2009

My Own Undoing

Bathroom: 3 (All day urgency and that almost burning irritated feeling in my colon. Realized about an hour ago that this was a feeling that I had on my way to remission and then it went away...am I going in the wrong direction?)

What I have been doing is not exactly everything that I have been told to do. I have been following some of my directions. I am still not eating vegetables (except spinach and avocado) or fruit (except applesauce and berries). I am still eating primarily white bread, pasta, rice and chicken and I added more sauces as directed. I eat a few M&M's every once in a while when I need some sugar and I cut out the soda in favour of juice and water (half and half or just water). I am taking a probiotic, multi-vitamin, vitamin D, Calcium suplement and of course my meds. Today I went down to 30 mg of prednisone.

But I also started to take some metamucil. I am taking a children's dose every day. I was going crazy because I couldn't pass anything. The day after I started taking the metamucil I started to have bm's a couple of times a day. They are mostly formed with just a tiny bit of mucus and nothing changed about them except that fact that I passed them every day. The urgency is the same and so is the consistency. I suspect my doctor would not be pleased because I wasn't supposed to do any drastic diet changes but he did say I could slowly start to change it. It is just so good to be able to go. I stopped for a day earlier in the week and immediately stopped being able to go. One day without was enough for me to think that it was helping rather than hurting.

I have also had a few things that are not on my diet that I didn't already cop to like cake, a tablespoon of peas (0nly once and there was no difference the next day), some snack that is supposed to be an alternative to chips but is really just puffed cardboard that has some salt in it (ate that to keep me out of the chips because I could read all the ingredients and they weren't so bad), and mayo on my sandwhich the other day but no one said anything about mayo so I don't know what list it is actually on.

Now I have this feeling return in my colon and I notice I am crampy today. I have alien belly. I can feel my colon as it clenches on the right and slowly squeezes all the way around. It is so strong I swear if I lifted my shirt you would see it under the skin like a baby or an alien waiting to claw its nasty way out. So the thing is that I have done just enough not right to make me wonder if my bad feelings today are of my own doing.

I think it is most likely the taper off prednisone that could be responsible for the burning. I just don't want that to be the answer. I want to taper off easily and manage this with the other meds and the diet. I am also dealing with some pretty bad dehydration (evidenced by my wrinkly hands and feet) and non of my other side effects have gone away yet.

Tuesday, May 5, 2009

Prednisone

Bathroom: 2 (Not emptying today. There is lots to go.)

I am tired of prednisone. I am tired of the acne, the hair on my face and the need to spend long hours in front of the bathroom mirror with wax strips and tweezers, the round moon face, the change in my body odor that makes me smell much more manly, the need to snack, indegestion, restlesness, not sleeping, the pain in my joints, the fatigue, the muscle weakness and pain, dehydration, increased thirst, flaking skin, and mood changes that are driving my family crazy.

Some of this started right away when I went on Pred. Some of it built up over the last two months and keeps getting worse or at least is staying the same even though my pred dose is getting lower. The rest of it, like the flaking skin, and dehydration seems to be new since I have been tapering.

My fingers are wrinkly and I am very thirsty. Some times I have to run to the bathroom because I have to pee so bad so suddenly.

I am thinking positive thoughts because I am staying on schedule for this taper. I will be well and I will be off prednisone. That has been decided. There is no going back.

Monday, May 4, 2009

Different medical focus

Today we went to the hospital.

Pook's first appointment was with pain management. They were late. After half an hour of waiting in a packed waiting area that was more like a pen, we let them know we were moving on to another part of the hospital for her next appointment.

We got to the second appointment on time and went in immediately. We were seen by a nurse practitioner, medical student and surgeon. They all had many questions, listened intently, and came up with their own conclusions. Our surgeon still does not believe that the shunt is the problem however, our insistence that something needs to be done now has lead him to take the next step. He is booking her in for another 24 hours of ICP monitoring followed by exploratory surgery. He says it is possible that she is no longer shunt dependent, that her shunt is blocked or that it is overdraining. I am asking that a new valve be used.

Now we must wait for the dates for all of this to happen. It isn't so easy to get the OR two days in a row. It will probably be another two weeks before we have any action. At least we are moving forward. None of us can stand to hear one more doctor say it is migraine or ask about stress. She has been unable to recover since her last surgery - that should mean something.

She was pleased with the results and is waiting for surgery and hoping she will feel better. She is showing no fear. She is miserable though. Really not well tonight after a long day, not enough sleep, and too much time upright.

I can not say how much I hope we find the answers.

Sunday, May 3, 2009

7 pred and counting

Bathroom: 0 but its still so early! (I went many times yesterday - 4 or 5 - I had a sense of urgency and my insides felt irritated and raw but there was no cramping or crying in the bathroom. When I went, I just went! It came out easily and was formed. Ha!)

I am wide awake and have been since 6:30. I was very tired last night and went to sleep without taking my Ativan. This is the price I pay. If I don't take the drugs I can't stay asleep. I slept for 6 hours. I really needed more.

Yesterday was a crazy busy day. I worked on my weekly readings and comments until about 3 p.m. and then I got started on house de-cluttering. We have painters coming on Monday morning. We have to pack up a lot of stuff that we won't unpack for the next 90 days. Our house should be on the market within 2 weeks and we will continue to look for a house to move to. We got the living room, dining room and front hall done yesterday. Today we have to do the kitchen and sort through the basement so that we have a place to start putting all of these boxes as we fill them.

For dinner, I ate home made chicken rice soup! I had even made the broth myself and it wasn't bad. To the average human it probably would have been bland but to my starved for flavour and variety taste buds it was awesome. The added benefit that I really was going easy on my colon made it taste better.

All of the activity yesterday left me exhausted. My joint pain was ridiculous. I even took Tylenol. I keep forgetting that I don't have my strength back. I get up and expect to just be able to do what I used to be able to do. When I get really tired and can't continue I am surprised. Again and again.

My side effects from Pred don't seem to be changing yet. The acne is out of control, the hair growth and moon face are keeping me far from mirrors, I am starting to gain weight and I want to snack so bad at night it is like I will die if I don't eat. Yesterday was my first day at 7. I am counting the days and the pills. I can't wait to be done with them.

Friday, May 1, 2009

School days

Bathroom: 2 times that produced something (dozens of trips to the bathroom for nothing due to urgency and pressure - GRRRR)

Yesterday was a day at home. I had a few trips to the bathroom, lots of pain in the morning and then it all got quiet. The rest of the day is a blur. It is just like all the other days. I don't really remember it. I don't think there was anything interesting about it.

I spent the day reading and working on this weeks course load. I have been having a difficult time getting back into the swing of things. I only had a week off and now I can't seem to find my groove. I can't even read a complete paragraph without my mind drifting off somewhere else. This will get better.

We went out and got some boxes today. We start de-cluttering tomorrow and preparing for the painter who is starting on Monday. I also went to the drug store and picked up some metamucil. I don't know what this will do to me but I hope it does something good! I took the children's recommended dose. Fingers crossed. I also got a bunch of mixed berry apple sauce because I need more fruit and I need it now! I wish I could eat banana's (allergy).

There are other things going on but they must remain secret for the time being. Too amazing to share. It's a luck thing.

I am having a hungry evening. I just want to eat. and eat. and eat.

I note a theme here. The theme is that there has been very little of interest going on either in my days or in my head. Time to work on that I think. I will creat interest.