Tuesday, August 30, 2011

I should have known better....

Some might call it stupid, some overly ambitious, but I decided to go back to work today. Since working for me means having to get up at 5:20 and commute for 1.30 h (subway, train, and then walk), I was already beat by the time I arrived at the hospital. On top of it I was wearing the wrong pants - quite tight and high up, always rubbing against my tube site.

I wanted to go back to work because I had told my boss last week that I was not going to be out any longer then Monday. It was her who ended up sending me home today anyway, telling me to go lie down and then wait until tomorrow morning to decide whether I was going to work tomorrow. Well, I have decided already that I will stay home. It is simply not worth it. I don't want to risk a feeding tube infection or some other complication.

Monday, August 29, 2011

Back to work

I am going back to work tomorrow. I am still a bit in pain, but it's tolerable, and I feel bad if I stay home another day. Tried to be more active today, to find out where my limits are, now I am so tired that I am already in bed (8.20).

If it was just for working, I would have no doubts (or at least less doubts), it's the commute there and back and the fact that I'll be on my feet for 12 hours that kind of scares me.

My stoma is looking alright, a bit red around the edges but that is to be expected. It's causing me less pain now to clean it up and advance the tube inside the stoma to avoid burried bumper syndrome. Talked to my enterostomy nurse today and will get some Medihoney tomorrow to speed up healing of the stoma tract.

I wished I could stay home another day, but I kind of promised my boss that I was going to come back tomorrow. On the other hand, at least work distracts me.

Sunday, August 28, 2011

Happy anniversary!

A year ago today I married my darling husband! Time definitely has flown by, and even though the first half year of our marriage were quite eventful due to my health problems, the past 8 months have been so wonderful!

M and I had been together for 8.5 years before tying the knot, but being married still made a difference to us. It seems as if our love just keeps growing deeper and deeper.

I never thought that I could love another person so much, but I can, and it makes me feel all wonderful, warm, and fuzzy inside :-).

Happy anniversary, sweetheart!

Friday, August 26, 2011

Home already!

M picked me up at the hospital at noon today. Because he was already down-town, we took the subway back home. Not one my better ideas. I was in quite a bit of pain when we finally got home, and had to resort to oral pain meds.

Nevertheless, it is good to be home. I hardly slept last night, as I had a really hard time finding a position that was not causing me too much pain. I am definitely hoping for a better night tonight, at least my matress is more comfortable :-).

I did my first dressing change with the nurse this morning, stoma is looking very beautiful. And my old G-stoma is closing up nicely already.

Even though I have so much experience in stoma care, I am feeling a bit uneasy at the moment, worried that I might be doing something wrong and cause an infection. I did another dressing change tonight all by myself, well M was watching me and handing me my supplies :-). It's really odd to suddenly have a brandnew stoma again.

We are all still very happy and elated that the surgery was a success.
It simply means so much more independence!

I am so grateful!

Thursday, August 25, 2011

It worked!!!!!!

When I woke up in pain after the procedure I knew that it must have worked - and it did :-). The new stoma is quite low, lower than I was expecting, might cause problems with wearing jeans at first, but I am sure I will get used to it.

I am still in hospital, haven't needed IV pain meds in 7 hours, haven't taken any oral pain meds either. Yes it hurts, especially when I move in bed, try to sit up or walk to the bathroom. But this nothing that I can't deal with.

I am simply happy that it all worked out in the end.

Thanks to everyone who thought of me today and wished me well.

Wednesday, August 24, 2011

Tomorrow's the big day

With lots of consequent and regular flushing my tube made it through the past few days, and tomorrow finally is the big day. After a failed J-tube placement in December last year, my dietician now managed to line up THE top GI when it comes to placing J-tubes, and he will attempt another placement tomorrow.

I have been able to keep my anxiety and excitement at a minimal level over the past few days, that's actually something I am really good at. No matter how exciting life is, I usually can always relax at night and sleep well. Last night was the first night that I was not able to sleep as well, of course the current heat wave does not make sleeping any easier.

I am hoping for some decent sleep tonight! And if that's not happening - I have got my Kindle and a really good new book to keep me company.

I have to be at the hospital by 7.30, but I don't know yet when my surgery will be.
I am really hoping that everything will work out, doing lots of positive imagery and visualizations :-).

On top of it, prayers and good thoughts are always appreciated!

Wednesday, August 17, 2011

An unbelievable lunch conversation

Ever since I started working at the hospital in SP almost three months ago, I have been going down to hospital canteen for lunch with my fellow psychologist colleagues. No, I can't eat anything there, and the odd day that I do decide to eat something (like a clear broth), I have been punished bitterly - (imagine trying not to throw up clear broth for 8 hours...., no idea what it is about the broth they use, actually I do, might be the histamine in it that I know am intolerant to, I sometimes have clear broth (no yeast = no histamine) at home that doesn't bother me that much).

But I have found some green tea that I can buy at the canteen (horribly expensive - € 0.80), but it makes me feel normal when I get to join in on lunch time chit-chat.

Usually we share a table with some of our attendings and residents, whoever is on duty. I have been running around with my waist pack and feeding tube since June now, none of the docs so far have ever asked why. But for the past two weeks some nasty comments have started like i.e. "You only have tea, are you sick?" or "Just soup???". I even once answered that I have a screwed-up GI-tract, but no further questions were asked.

Today - Dr. R. looked at me and said "Do all psychologists eat that little?" Not even listening to my standard answer, but instead keeping on joking "did you get sick before you ate our food here or afterwards"....

I exchanged some nasty looks with our psychology intern and kept on enjoying my tea. Dr. R. and some other docs left, leaving just me, my boss, and Dr. T. who had been one of the previous commenters. He started commenting again on my tea drinking behaviour, when I decided I had had enough.
"I can't eat".
"Do you have an eating disorder?"
Big sigh.... did I say I don't want to eat? no.....
"No, I have a screwed up GI tract, and I have a feeding tube in my jejunum that I am fed through over 23 hours a day."
I should maybe add at this point that this was a neurology attending I was talking to, he is used to having stroke patients with all kinds of feeding tubes on his ward.....
"What do you have?"
"I have gastroparesis, exocrine pancreas insufficiency, and protein malabsorption."
"What's that?"
Am I really talking to a doctor??????
"Well my stomach won't empty, and my pancreas doesn't produce enough enzymes."
"And how are you fed - subcutaneously?"
Insert big, big questions marks on my side here..... shouldn't a neurologist know a bit more about feeding tubes when he orders NGs and PEGs for his patients all the time????
"No, my tube is in my jejunum."
"And the food you are getting, can you buy that pre-made?"
Some more questions marks on my side - bottles and bags with tube feeding formulas attached to his patients on IV poles are a very common sight....
"Isn't it difficult to not eat?"
"Well, I prefer it over the alternative - dying."
At that point my boss started being more active in our conversation, asking him if he thought as well that I am doing an incredible job with all of my handicaps....

I am so glad I finally got to tell someone. I really don't like it when people assume that I have an eating disorder just because I am not eating and still a bit on the slim side (but definitely not ill looking anymore). I much rather prefer to be asked and to be able to explain than to be judged just on my behaviours.

Saturday, August 13, 2011

Tube countdown

I have had this current PEG/J for 7.5 months now, a long time considering the fact that my J-line is 3 feet long. I have only had a few problems with my tube clogging up in the first six months thanks to my very creative way of flushing my tube (with the plunger against the wall and pushing with all of my strength against it). I also treated my tube to a liquid vitamin c treatment once a week.

For the past two weeks my tube has started to act up, clogging up throughout the day and of course during the night as well. So far I have always been able to de-clog it, but it is starting to get annoying. What makes things a bit stressful for me is that I have an appointment for a direct J-tube (or if it fails again a tube change) on Aug. 25th. It would be very very inconvenient for the tube to fail before Aug. 25th. My dietician managed to line up the top guy at the university hospital for putting j-tubes in. If my tube failed before that, I can't get in earlier.

During the day I always flush it once every 4.5 hours (sometimes even more often), but I never used to flush during the night in order to get a full nights sleep without being interrupted. I have decided that a working tube is definitely more important than sleeping through the night without having to get up, therefore I have started to set my alarm clock to 2 AM in the morning. This has been working well so far.

I am trying my best not to freak out and not to think through any "what if" scenarios. But every day when I get up in the morning I am happy that another day has passed and there is one more less day until tube day :-).

So yes, I am counting down the days - today is day 12!

The tale of the bed spread

I always wanted to have a really nice bed spread for our bed. Our bedroom in the old apartment was very tiny and narrow, with the bed fitting exactly between the two walls. I tried using a bed spread there, but gave up after a few days - too much work trying to put it on the bed with not being able to access the bed on the left and right side as well.

But our new bedroom is spaceous - perfect for a bed spread. I bought a dark purple / mauve colored one at Ikea, also looking forward to having a way to keep the cats off our duvets and pillows. We originally wanted to keep the cats completely out of the bedroom, but they are still a bit stressed out from all the change and being able to sleep on our bed gives them comfort. On top of our move M has started his new job, now he only works from home one day a week. Of course the cats have been really spoiled in the past few years with him always working from home.

Last Saturday we put on the bed spread for the very first time. A couple hours later I walked into the bedroom and I couldn't believe my eyes. Aaliyah had climbed below the spread, sleeping contently ON our duvets, but below the throw. Not what I had had in mind when I put the spread on. Obviously she needed to be able to sleep below something to feel safe, therefore I put an old sheet on top of my bed spread for her to sleep under. Of course she decided that below the bed spread still is the better choice.

A few days later M and I observed the accumulation of red cat hair on our duvets, something that we really wanted to avoid.

So we came up with a temporary solution:
Every morning M takes our duvets and pillows and stores them in our closet. Then he puts the bed spread on the (empty) bed - kind of looks funny - but if that's what they need right now, then I am happy to accommodate that - as long as I can still have my new bed spread on my bed!

Wednesday, August 3, 2011

It's not getting better....

I know I have written about it so much in the past two months, but everything comes down to it right now. I am so tired all the time. By this point I am looking forward to having my iron status checked in a few weeks, hoping that it is not just the commute and full-time-job that is taking everything out of me, hoping that a few iron infusions will be a magical fix.

I have so many stories to tell, cat funnies to write about, pics to show, but I hardly have the energy to spend time on the computer these days. I still need to work on the apartment, but when I come home from work, I am much too exhausted for that.

The cats are still getting used to the balcony - Laura is the only one that really takes full use of it, the two younger ones are still a bit scared. Aimee prefers just sitting in front of the open door, having a look and a sniff of fresh air.

With the weather being exceptionally bad this summer, M and I have not been spending that much time on the balcony either.

M is out with a friend tonight, and I am going to pull myself together and clean the bathroom, hang up the new shower curtain, and the new towels. And go to bed at 8 PM again, like I have been trying to do for the past few nights in an attempt to catch up on my sleep.

I know I sound a bit down, I am positive and upbeat most of the day, but it's past 6 Pm now, and I am feeling ready for bed already. It's quite funny though - all the kids in our neighbourhood are still running around and playing on the playground by the time I am in bed :-) - I am getting old :-)!