Tricia's Musings

Random Thoughts about life in general, living in the big city of Toronto



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Sore Loser

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I’m totally out of it after the race to put together the puzzle. I had massive internet connection problems from 3 pm Thursday until sometime this afternoon, so in the final portion of the puzzle race I was fighting an internet connection that was slower than a dial up connection. It’s a wonder that I even managed to collect all the puzzle pieces and post my completed puzzle within a few minutes of the end of the contest. Yes, it was close!

I paid the price though. I was up from Wednesday Morning until 2 am Thursday puzzle hunting. Then I slept from 2 am until 5:30 am this morning and then got up to hunt for the final two puzzle pieces. The contest ended at about 11:45 when Colleen beat me and a few others by submitting the puzzle first. I crashed on the couch at 1:30 pm or so and woke up a bit after 4 pm. I guess today, in two short periods of sleep I kind of caught up, but I feel terrible. I’m wiped out, my eyes are burning, I’m light headed and my abdomen is aching like crazy. Yeah- when I don’t manage to get some sleep the Crohns really flares.

Thanks Ted for dragging out the contest. LOL Now it’s going to take me a week or two to recover ’cause I think it made my Crohns flare worse. I wish I wouldn’t jump at challenges the way I do. I’m a total A type personality. Of course I was taunted with the possibility of winning $1000 and if you’ve been reading this site for anytime you know I’m not working because of the Crohns so I really did need that money. That’s why I pushed myself so hard. I’m going to pay for it.

Two very kind people helped me at one point or another during the contest. I won’t mention their names here just in case they don’t want others to know, but I will say that I totally appreciate their help and kindness and I’ll try to help them out in some way in the future. Thank you!





Un-reasonable suggestions by my doctor

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Two appointments down, one to go. What a busy week. Did I tell you I HATE seeing doctors? Especially when I know that they are having trouble figuring out how to help me?

The GI doc I saw yesterday would like to stop my pain meds. Hello? What did you say? I’ve been living in pain since 1992 and just finally was given pain meds for the hell I live in this past January after having been sick with a non relenting Crohns flare for a whole year prior to seeing the pain do, and I’m starting to function a bit better, and you what? want me to stop taking the pain meds?

Sure. Sure I will, but only if you’re going to pay my mortgage and house bills etc because I won’t be able to even sit up at the computer as I’m doing now without them. Yeah sure.

Yep that was pretty much the outcome of my latest GI appointment. He didn’t want to start me on any new Crohns meds, in fact he doesn’t think the Pentasa is doing anything for me either so why not stop that too.

I’ve been in a two year flare and he’s putting me back to square one without anything to help me get better? I was hoping he’d put me on another type of medication for Crohns to try to nip this in the bud so to speak and get me back to work. GEEZ.

I’m so frustrate.

Oh yeah … I can become a totally digital person by swallowing a camera pill to find out what’s going on inside my small bowel. Unfortunately our Insurance doesn’t pay for the $1200 or so test. I’m going to do it, but I have no idea how I’m going to pay for it.

Grrrr! I just wish a magic fairy would come by and tap me with her wand and fix this flare.

Doctors Hospitals and the ICU

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So I saw the family doc yesterday. I was not well yesterday at all. I was nauseated when I went to bed, didn’t sleep well – waking every 15 minutes or so, and nauseated when I got up and throughout the day until at least 11 pm or so. You know how sometimes after you get sick you feel so much better? Well I was seriously thinking of making myself get sick, that’s how bad it was. I’ve been like that for days now.

So naturally I went to my doctor in that kind of condition – and had a fever while I was there too. Big surprise that she wrote a note keeping me off work for a while longer then eh? No dates on this one, just that I’m still ill and undergoing medical evaluation.

Now to see what the gastrointernologist has to say later this afternoon. His office never called this week to confirm the appointment, I sure hope it’s still on. Chris rearranged his work schedule so that he could go with me. Plus I’ve been waiting to see him since the day after my MRI in October so it’d better happen.

One of my nurse friends called me this afternoon, co-incidentally she happens to work in the Occ health office now (I have an appt there Friday), she was calling to let me know that another nurse friend of ours had been hospitalized again. She has chronic asthma and lung damage thanks to a chemical spill at one of her workplaces prior to her becoming a nurse. It looks like she’s going to end up hospitalized two or three times each year now if the past couple are any indication.

My friend is in the ICU. I was told that her breathing was so bad that she would likely end up intubated by the end of the evening. This happened to her last year – her breathing was so bad that they kept her sedated and intubated her. If I’m not feeling too bad myself I’m going to try to go over to the hospital this evening to see her. I didn’t want to go yesterday because as I said I was so nauseated, and had a fever. It’s probably the Crohns that’s causing all of that, but if I have an infection then going into the ICU to see her when her lungs in such bad shape is not a good idea.

It just goes to show that as bad as you think things are going for yourself sometimes, that other people often have it worse. Send some good thoughts for my friend please?

A week of appointments

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Starting today I’m going to go through another week of doctors appointments. I have to see the family doctor this morning. One of the reason that I need to see her is to access whether I’m ready to go back to work or not. I hate to say this but I’ve been doing horribly lately and I think if they send me back I’ll be off work again by Christmas. I hate failing- and being off work feels like failure, and then trying to go back and getting sicker and sicker as I work my shifts also feels like a major failure. I hate this. I wish my Crohns would just settle down.

Then on Wednesday I get to see my gastrointernoligist. It’s time to go over the results of all the tests he’s put me through in the last several months from gastroscopy, coloscopy, CT enteroclysis, and uhmmm rectal MRI – why they didn’t take MRI photos of my small bowel while I was lying in that horrible machine for an hour I don’t know but they only did the one area. I already know that the scopes didn’t show anything – no surprise there, my problems are in the small bowel where the scopes don’t reach, but I don’t know the results of the CT. The MRI surprisingly, because I didn’t think I had any problems down there, did show granulomas, enlarged nodes – all signs of an inflammatory process going on. We’ll see how the doctor interprets all of these lovely results.

I also need to find out from him if he thinks I should try to return to work. What I’m hoping is that some of the results he obtained from the tests will give him some ideas, and maybe he’ll try me on different Crohn’s meds. Maybe ones that actually work so that I can feel better and get back to work.

I barely go out anymore because I get so nauseated when I’m walking around, or my abdomen starts hurting more and more. Unfortunately this means I’m not getting much exercise or activity – which I hate.

The last appointment that I have is on Friday afternoon. It’s with the Occupational health doctor from my workplace. It’s for him that I need to get notes from the other doctors that I’m seeing this week. Notes that tell him whether I should return to work or not. Since I’ve been off work for a year he needs some official paperwork to back things up if I end up staying off for another month or more.

Wish me luck- either that I spontaneously get better or that I have good appointments with my doctors and we come to some decisions that work for all of us – mainly me of course – anything that will make me start to get better would be great.

Screwed up sleep cycle

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I’m exhausted.

I find myself staying up all night because of my pain and then sleeping well into the day. yeah I’m sleeping but my body really wants to sleep at night.

When I do get up my head is foggy and I can’t concentrate as well these days. I need to try to turn my rotten sleep cycle around again.

I’ve thought of trying to stay up through the night and into the day and then crashing sometime in the evening, but whenever I’ve tried that I only sleep for a few hours and wake up in so much pain that I’m awake for several hours before I can get it under control and go to bed again, and often by that time it’s like 6 am. Grrr.

I’ve got to turn this around.

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