Tuesday, December 29, 2009

Tube Girl in Switzerland

Yes - that's right.
Tube Girl is currently residing in Switzerland.

Some old friends of mine spontaneously invited M and I to visit them in Switzerland a few weeks ago, and of course we just simply had to take them up on their offer. They had an appartment available for us to stay in, which makes this type of vacation affordable to us.

My Mum was kind enough to lend us her car and that made travelling for 7 hours from M's parents place in Wattens to this lovely swiss skiing village bearable. I am really proud of myself because I drove all the way. M had a touch of a cold (pure exhaustion from too much work, in my opinion) and was doped up on some cold meds. There was no way that I would have let him drive.

The last 15 minutes of our drive were the scariest ones. I had selected the quickest route in my navigation device and it led us through vineyards along roads only local people use. Imagine this: to my left vineyards going up, to my right vineyards again, steeply going down, a two-way road built like a one-way... My adrenaline level just kept rising, and I was so grateful when we ended up on the main road again after 10 scary minutes. Oh, and I kept stalling my Mum's car going around very narrow curves, as it was so steep and it is a diesel motor, and I kept forgetting to down-shift the gears...

We arrived on Sunday late afternoon and had a lovely dinner with our friends. I made the big mistake of wanting to "be normal" and had a tiny bit of grilled chicken and some steamed potatoes and zucchinis at 8.30 PM. Honestly it was not a lot of chicken, and I really thought I would be fine. Well, I wasn't. 8.30 PM is just too late for my stomach to even think about digesting the chicken properly. I ended up not being able to hook up my tube-feeds and 12 hours later on the next day I still had chicken in my residuals from my g-tube. Had a low-key food day yesterday and extra tube feeds during the night.

Being in this lovely skiing village and having access to a big skiing area in the Swiss alps made M's and mine legs really itchy to get up on the mountains. And that's what we did today! Got up early in the morning, rented some skis and boots, spent a small fortune on a three-day-skiing pass and up we went. In the beginning the weather was good, the view was breathtaking, the snow was perfect. Later on it started raining and snowing and the snow felt quite heavy.

Even though I used to be a good skiier when I was a teenager I did have some problems getting into it today. My left ski boot really hurt and that didn't make it easier getting back into the rhythm.
My dear fiance on the other hand, showed me once again today that he is a true Tyrolian (for my Non-Austrian readers, Tyrol is a province of Austria located in the Alps and full of skiing opportunities and most Tyrolians learn how to ski just after learning how to walk). I now know why women fall for skiing instructors. When I watched him wedeling down that slope, he did indeed look very sexy :-)

The only downfall today was that, once again, I wanted to be normal and instead of eating my packed lunch, I shared a grilled chicken with bread and only a few french fries with M. That damn grilled chicken really bothered me when we went back to skiing after lunch and I had hard time not getting too nauseated to keep on driving. M got mad at me afterwards for eating with him and he had me promise that I would stick to carbohydrates tomorrow while skiing.

We are both really tired now, even though it is only 7.30 PM. We are planning a quiet night in, watching a movie and going to bed really early to be fit for another day of skiing.

Sunday, December 20, 2009

Sunday evening update

A lot has happened since I last posted.

My dietician finally reviewed my last BIA (body impedance analysis) results and actually had them reviewed by several professionals. Turns out that even though I had gained quite a bit of weight and am finally approaching a normal BMI range, clinically I am still malnourished. I still have far too much extracellular water and too little active body mass (muscle mass). This means that my cells can't absorb the water and I am still fluid-overloaded and protein-deficient.

My dietician therefore upped my protein intake and I am to intensify my strength training. Even though I am already on a very high protein formula (7.5g/100ml), I now have to have protein supplements throughout the day. The protein supplement is low in fat, lactose- and sugarfree and unflavored and even though it can be mixed into some foods (it doesn't taste too bad with dairy), I have to tube-feed it with some snacks.

That has not been going too well. I am supposed to have at least 25 g of additional protein, but on most days I only manage about 10-15 g. I don't mind adding it to snacks (whenever it won't compromise the taste of a meal), but I am having a very hard time taking the time for myself to prepare the protein supplement and a syringe, get my extension tubing and tube-feed it. I was a good girl for the first few days (didn't have to work those days), then I started working again and even though I managed to feed myself the supplement twice while at work, I only did that one day and then stopped completely. As a consequence I kind of forgot about it at home too...

I am glad my christmas vacation is coming up. I am looking forward to being able to get myself into a routine and hopefully will be able to continue with it at work too.

I am supposed to keep a protein diary and count the grams of protein I have during each day. My dietician wants me to get 120g protein/day, this can only be done under medical guidance, and I think I will have a blood test to check my kidney function tomorrow. This will be repeated in regular intervals.

Sunday, December 13, 2009

Atopic dermatitis

A couple weeks ago I was diagnosed with atopic dermatitis. I had always thought that this was something you get as a child or not at all, not in your early thirties.

Of course, according to the dermatologist, it makes sense, as I have a lot of contributing factors: I have severe pollen allergies and am histamine intolerant. But still...

And then I started doubting my dermatologist. Even though atopic dermatitis is her speciality, I keep thinking, maybe she is wrong, maybe it is something totally different, and what if she is really wrong, and I am at the hands of someone really incapable?
And then I am searching the internet for pictures of atopic dermatitis comparing them to my rash....

I now know what this is - this is full-blown denial!

And slowly I have come round. After 10 days of topical steroid treatment and switching to a different cream, I had my first relapse. I then went to see my dermatologist again and we went through everything again, through potential triggers and treatment options that can be done beside using steroid creams. And then I got it, I think. Denial is still there, but at least I am following her advice. I have bought some really good creams and lotions for atopic dermatitis, I have realized that not only that patch of real eczema is a problem, but my very dry skin in general. I am now bathing in almond oil and dead sea salt water once a day, and I even started following her advice on doing moist/fat dressings on my eczema. And yes, it is starting to look better again, but of course not as good as it looked after the steroid treatment.

I will see my doc again next Friday and hopefully I will be allowed to continue with the non-steroid treatment.
She did take another culture of my eczema last Wednesday and hopefully those cultures will be clear once again. I want to avoid having to take oral antibiotics at all cost, as they tend to wreck my already very fragile digestive system big time.

M's mantra for me always is (regarding all my health problems): patience and consistency. I guess this applies to dealing with my eczema as well.

Saturday, December 12, 2009

How I met M - Part 2

A couple weeks passed before I decided to contact M. Because really, I always like to meet new people. But instead of calling him, I texted him and gave him my email-address, thinking that this would be less obtrusive.

He really did e-mail me the next day and told me a bit about himself and we decided to meet for some tea the following Sunday. It was kind of strange, I had never been on a blind date before, even though, technically it was not a real blind date because I had no romantic interest whatsoever, I just wanted to meet someone new.

Well, that was before I met him. We had set up a meeting point at a downtown subway station and I was there before him, waiting for him. He had told me what he was going to wear that day, and there I stood waiting for him to come up the escalator. I remember thinking to myself, whenever am man came up the escalator that I didn't find cute: "please, let that not be him". A bit shallow, I know :-)

And then he did come up the escalator and when I realized it was him, my heart started beating faster (I know, very corny), and then he started talking to me, and he has quite a deap voice and a very sexy (in my opinion) Tyrolian (part of Austria) accent. For me, I guess, it kind of was love at first sight!

We went to a café to have some tea and talked and talked and talked for almost three hours. I felt really comfortable talking to him and the more I got to know him the more I wanted to meet him again. But I had no idea how he felt about me, I didn't even know if he had a girlfriend or not.

We both had to take the same subway line, but after a very noncommittal good-bye just before I had to get off the train, I had no idea if I was going to see him again....

Tuesday, December 8, 2009

How I met M - Part 1

Today is M's and I 7th year anniversary. We had originally planned to re-inact our first date, but M has been feeling a bit sick and with today being a public holiday we stayed in and watched a movie. Oh yes, and he took me to "B never too busy to be beautiful" - a lovely little make up store with the coolest and most extravagant make up I have ever seen and treated me to some really cool eyeliner and eyeshadow.

How I met M - Part 1 :-)

With today being this special day I want to tell you about how M and I met because it is a neat story. My stepmom Ursula met M at a meditation class in Linz in November 2002, during break time she listened to him talking to other people and thought to herself that M seemed to think like I do and felt that we should meet each other. Being the straight forward person that she is, she went up to him told him about me and knowing that he was studying at the University of Vienna as well and therefore living in Vienna she asked him for his cell phone number to give to me.

A couple days later my Ursula called me and told me about M and gave me his phone number. I wrote it down just to please my Dad and my stepmom, thinking to myself that I was not going to call him.....

Saturday, November 28, 2009

Epiphany on how to live with all my digestive problems

I had an epiphany last week:

If I am feeling sick and nauseated and having very "slow stomach days", than this is, at least up to a certain point, my fault.

The thing is, my biggest problem at the moment is accepting my situation. Yes, I have delayed gastric emptying and a whole bunch of other digestive problems on top of it and no, those digestive issues are not going to magically resolve itself overnight. If I was to finally accept this situation, I would not be as surprised about my "slow stomach". And maybe I would finally stop continually "testing" my stomach to see if maybe I could tolerate that food or if it had gotten magically better overnight.

If I look at the big picture, my situation itself is not that bad. I can drink enough fluids on most days to stay hydrated, I can take in enough calories (plus extra for a few more kilos) thanks to my feeding tube, and I can eat certain foods during the day without getting sick.

When I talk about accepting my situation, I don't mean that I am going to resign myself to it and think my digestive system will never improve. I am just trying to relax with this situation and try to master it with a backpack full of tools. And I really do have a backpack full of tools: domperidone, more tube-feeding, less volume, low-fiber and low-fat foods....

I don't want to pity myself and give up, no, I want to make the best of it and I don't want to question what actually works for me, just because I am getting tired of having a low variety in foods or thinking that I should be having more vegetables because aren't vegetables supposed to be really good for you?

I therefore think that it is largely up to me if I am feeling more nauseated or less nauseated and if am sticking to my dietician's orders on which foods to avoid for delayed gastric emptying (and my many other food intolerances and allergies) and, if necessary, supplement with more tube feeds during the night, I actually feel quite well and healthy and am able to live almost symptom-free.

M's mantra for me always is: patience and consistency - and he is so right, I know :-)

My goal for the next few weeks (actually for longer, but you are supposed to work with attainable goals):
  • be consistent
  • listen to my inner "stomach voice"
  • only eat the things I know I can tolerate
  • take my domperidone (and enough of it)
I want to try and "like" my stomach and my entire digestive system and have positive thoughts about them. Given the fact how barbaric I treated my digestive system for so many years, I want to be grateful that they still function as well as they do, that I can eat orally and don't have to live off tube feeds only and that they are doing such a good job digesting all that tube feeding formula that I feed during the night.

Thursday, November 26, 2009

Thursday evening update

I had planned to write a really positive and upbeat update tonight, telling you about all the good things that have happened in the past two weeks. But I feel drained and tired and nauseous.... and have a hard time thinking of the good things in my life.

But the good things definitely are there:
  • my fiance who loves me unconditionally and just finished cleaning the kitchen and is running me a nice hot bath as I write
  • getting the opportunity to do my mandatory work experience for my Master's degree in a Neurology ward in a Vienna hospital - something I have always wanted to do
  • having S to always talk to who is in the same boat I am in regarding our respective theses with our very difficult professor
  • having the best dietician in the world
  • being able to be a god-mother to one of my friend's twin boys and having the opportunity to hold him and feed him and diaper him ....
  • having a backpack full of tools to deal with my digestive problems
  • my feeding tube that allows me to gain and maintain my weight and have enough energy and be healthy
 Not to forget about my three, slightly crazy, yet very lovable kitties:

 Kitty love!!!!

Aimee after her morning shower :-)

Friday, November 20, 2009

My skin and I - a love hate relationship

I have super-sensitive skin, can only use allergy tested fragrance free skin products, fragrance free laundry detergents etc.

When I had had so much success with the Medihoney treating my stoma infection this summer, I decided to also start using the Medihoney barrier cream for the skin around my stoma to protect it from friction through the button and stomach acid. Unfortunately I had some type of reaction to the cream. I don't think it was the cream itself, it was more the fact that it somehow plugged my sweat glands and when I sweat underneath my dressing the hair follicles on my skin became infected. I have been silently watching this rash for six weeks, trying different things, not using certain things, hoping for it to get better. It always looks better in the morning, but as soon as I started to sweat only a bit, it would start to look really red and angry again.

My tube and consequently my stoma is my lifeline. And knowing I had some kind of rash going on that didn't really go away on its own put me under a lot of stress.

Wednesday I finally capitulated and made an appointment at a dermatologists. I found a private dermatologist that takes patients at short notice and I had my appointment this morning.

I am so glad I went and didn't sit around and watch the rash any longer. Turns out I have atopic excema, and several factors like the barrier cream, the sweating underneath the dressing, my many allergies contributed to me developing this excema.

The dermatologist took a skin culture and I have to start using a steroid cream. I also have to disinfect the affected area. I hate doing that because I was told to not use disinfectants with my stoma and I don't have the rash on my stoma. I will try my best to not get any disinfectant near it :-) and keep it clear from the steroid cream.

The dermatologist promised me that we will be able to heal it, but I am just so impatient. I want it to be better NOW, so that I don't have to worry about it any longer. I am dependent on this feeding tube and everything that comes with it to work.

I have a question though for fellow tube-feeders. Do you use dressings underneath your button/g-tube? I just read in an old mic-key button manual that I found while cleaning up that you are not supposed to use dressings long-term. I am not sure if the dressing contributed to the excema, but on the other hand, my stoma gets really wet without a dressing and the last time I stopped using dressings for a few weeks I developed my stoma infection.

Sometimes I just hate all of this. I hate that I have to deal with and worry about stuff like this.

Tuesday, November 17, 2009

Just came back from the MRI, no iv contrast needed and the MRI itself not bad at all.
It was noisy and very tight and narrow, but as long as I kept my eyes closed, I didn't feel panicky.
Results will be in tomorrow.

Monday, November 16, 2009

MRI tomorrow

I have been gradually losing my sense of smell over the past half year. Actually the first time I noticed it was this summer while on vacation with M (couldn't really smell the lovely scent of ocean air) and I also posted about it here.

I casually mentioned it to my ENT during my last appointment in October and was quite surprised to find out that he wanted me to have an MRI of my head. Even though he thinks that this might be all due to the severe allergic rhinitis I have had for years, he still wants to be 100 % sure that nothing else is happening inside my brain that could cause this kind of symptom.

Essentially, he is looking for tumours and that does scare me a bit, but I know in my heart that everything will be all right.

What really scares me though is the prospect of having contrast dye injected for the MRI. I am histamine intolerant and contrast dye in histamin intolerant people can cause adverse reactions, and that's what I am scared off.

Please pray that everything will go well tomorrow!

Monday, November 9, 2009


I usually always try to be up-beat and positive, but today I just can't.

I actually had a wonderful afternoon, spending time with my best friend and her twin boys (one of them being my god-child), having lots of cuddly time with both boys, feeding them and changing diapers and lots of woman-to-woman chats with my friend.

But still, I am having a hard time fighting off feeling down. I have been having bad "slow stomach days" since last Thursday and I just hate the nausea and feeling full all the time that comes with it. I have been taking domperidone again, and it does help a bit, but I hate to rely on even more meds to function somewhat.

We have been increasing my tube-feeding calories because of my high energy needs - more calories means more formula and that means more time spent hooked-up. When I am having bad gastroparesis days and I can't eat enough orally during the day, I have to increase my nightly tubefeeds even more and I hate being hooked up for so many hours. At the same time I simply don't want to hook up during the day, especially when I am at work.

Sunday, November 8, 2009

Are you doing it twice a week?

Alcoholism is big problem here in Austria, especially in rural areas. Therefore, the Austrian Health Ministry has launched a new campaign to combat alcoholism in Austria and this is one of the adds (source: http://www.bmg.gv.at)

It says: Are you doing it at least twice a week?
Meaning: are you having at least two alcohol-free days a week?

Scary to think that the Austrian Health Ministry actually has to campaign for people to have to alcohol-free days a week....

I am doing it twice a week, actually seven times a week, as I can't tolerate any alcohol.

How about you?

Friday, November 6, 2009

Usb-stick drama

I had my own little usb-stick drama on Thursday.

I am working on my thesis like a maniac right now. At the moment I am going through all data files, inspecting each and every single eeg recording for artefacts and correcting those artefacts using several excel macros. I have been doing this for the past three weeks, as this is a very tedious work. (I have to go through 96 data files with four study conditions each and per study condition I have 15 eeg recordings to look at - making this 5760 eeg recordings I have to go through.
I am working on my thesis

On Wednesday I spent seven hours in the lab correcting artefacts. Because I did not want to save my work on our lab pc I directly worked on my usb-stick all day. I usually save all my work on my own laptop at home at night, but that night I had left my usb-stick at work.

Back in the lab the next morning, I plugged in my usb-stick into our lab pc and nothing happened, when I tried opening it, I was told that the usb stick was not formated and did I want to format it now? Formatting - no way! I retried it on my netbook - nothing. I then asked our computer technician, who tried it with his pc - nothing. He then informed me that one is not supposed to directly work on a usb-stick, because usb-sticks have a limited cycle amount. Aarghhhhh! If I had only known that before!

I spent yesterday evening and this morning redoing all the work I had already done the day before - not directly working on my usb-stick this time around.

If you are curious, this is what I have been doing:

This odd looking spike is an artefact due to our unfortunately often mal-functioning eeg-hardware. Using excel macros I try to eliminate those artefacts as good as possible. So much fun (not) :-)

Friday, October 30, 2009

Thank God for step-fathers!

Most of you know by now that I have three cats, three very furry long-haired cats to be specific. They all shed like crazy and with so much cat hair floating around on my carpet and my hardwood floor, it shouldn't have surprised me to find millions of cat hair stuck in the wheels of my IV (tube feeding) pole when I tried to get to the bottom of my non-rolling IV pole wheels.

Being the handy-man (woman) around this household, I wanted to try fixing it myself. Imagine me sitting on the floor, crouched over the wheels of my IV pole with a pair of tweezers and a pair of tiny sewing scissors trying to "de-fur" the wheels. I managed to get out quite a bit of tangled cat-hair, but not enough to get my IV pole running again, I then resorted to carrying my IV pole through the appartment at night. Very inconvenient, especially when trying to get into my bedroom without my cats (we have a strict no-cat policy during the night - cat teeth and giving set tubes simply don't get along).

Last weekend we went home to stay at my parents and since my step-father is way more of a handy-man than I am I asked him to help me fix my wheels. M and I arrived Saturday afternoon when my parents were out shopping, put our luggage (and my pole) inside and left for our family therapist appointment. When we came back almost two hours later, I was very surprised to find out that my step-father had already fixed my IV pole. I was so curious to find out how he had gotten rid of all the cat hair and couldn't wait to ask him. "Well", he told me, "I went to the hardware store and bought five new wheels".

I laughed so hard! For some reasong I would have never thought to just buy new wheels.

So yes, thanks to my stepdad I am now sporting five brand-new wheels on my IV pole! And they work so well! M keeps saying that he has to implement a speed limit in our hallway because of my speedy IV pole wheels!

My IV pole waiting for its next spin with Tube Girl!

Thursday, October 29, 2009

The power of thoughts

I have had my button in for 14 weeks and a couple days ago I started to think about how long the balloon would last for, how would I know when to replace it, would it start leaking water or would it simply pop and what would happen if it popped during my sleep etc..... So many thoughts!

I guess too many thoughts!

Yesterday morning when I cleaned my stoma my button was still all tight against my skin. A couple hours later I was at work, just sitting and working on the computer, thinking to myself that for some odd reason my button felt a bit wobbly and when I pulled on it I almost started pulling it out of my stoma. Oh yes, the power of thoughts, the balloon had finally given in and at a quite inconvenient time, because I had just started to work and had to work for 7 more hours before I could finally go home. My gi-doc told me to never leave the house without some kind of medical tape in my purse and thank god I am so good about following his advice!

I taped up my button and hoped for the best, but was so happy when I was finally back home and able to replace it.

The replacement went really well and quick, M took photos of my empty stoma and of me putting the new button in - he sure loves to take photos! My stoma really does look good and healthy and it only bled a little when I took the old button out.

Now I am all buttoned up again with my new Mini one button and hoping for a long button life again!

Wednesday, October 21, 2009

finally an update

It's been a while since my last update.

It has been quite a week. I have been having problems at work with a co-worker and that really put me under a lot of stress over the weekend. This actually is an on-going problem that has escalated over the last few weeks. Thankfully I have a session with our family therapist coming up on Saturday and I am really looking forward to get some practical advice from her on how to deal with the situation.

M and I have finally set a date for our wedding and I am so excited because two of my careworkers from when I was at the Montreux clinic in Canada have already told me that they will come to Vienna to watch me get married. Those two women are part of the reason that I am alive and happy and healthy. They have put so much love and effort (way beyond what they were paid for you) into helping me recover and I feel honored to have them with me on that special day.

M and I have now booked the church for the wedding and the hotel for the reception. We still have to book the stylist and photographer.
A friend of ours (a musician) will dj at the reception and will also play with his girlfriend (who is one of my best friends) during the church ceremony (they are both flautists, but he will also play the sax). I am going to have a really "musical wedding", not only will my friends play, my future sister-in-law will sing.

The other big news I wanted to tell are:
I passed my last exam!!! And now I have to brag a bit because not only did I pass, I got an A! Now I just (this is the understatement of the day) have to complete my thesis and take my diploma exam.
If I had known how much work an eeg-study is I would have not written my thesis in neuropsychology. It took me an entire semester to plan my study and program the computer program, another semester to record the eeg data and it probably will take another semester to analyze the data and write the thesis. But here is the thing: not only am I analyzing eeg data, I am also analyzing ecg data with regards to heart rate variability. I obviously did not think straight when I agreed to do both.

Tuesday, October 13, 2009

Ballroom dancing classes

Yesterday in a spur of the moment decision I signed up M and I for some ballroom dancing classes in preparation for our wedding. M has never taken ballrooem classes before, whereas I have as a teenager.

Tonight we had our first class, and we both loved it! I love dancing and I was really worried that M would turn out to be a terrible dancer, but he certainly has talent!

I am so happy to have enough energy to do fun stuff like this. Thank god for my button and my tube feeds! I haven't had this much energy in years. I really does make a difference if you are able to give your body the energy it needs.

Monday, October 12, 2009

Becoming a godmother

Yesterday I had the honor of becoming a godmother to Simon.

Although it had rained all night, it turned out to be sunny (and very windy).


Clemens (godfather to twin No. 2) and I proudly holding the boys. 

Simon was such a brave boy - he didn't even flinch when he got baptized.




Proud parents and proud godparents.

Wednesday, October 7, 2009

Very anxious before my last exam

This is it - in about 50 minutes I will start writing my last exam. My stomach and my intestines are going crazy today (can't blame them). I am really nervous. I just want to be done with it. I will probably leave now and only take the subway for half the way there and walk the rest of the way to walk off some of that nervous energy.
I know I have studied well and I know I am usually can work well in exam situations.
So whoever reads this, please keep your fingers crossed for me!

Monday, October 5, 2009

A Sunday trip to the Vienna Zoo and Schönbrunn

On Sunday afternoon I took a (well-deserved) break from studying and convinced M to go to the Vienna Zoo with me (even though it is ridiculously expensive).

The Imperial Palace - Schönbrunn 

And again

the polar bear siblings play-fighting

Polar bear Mum having an itch

Fu long enjoying his dinner of bamboo sprouts

M and I - happy

M had worked about 70 hours this week and we really needed this Sunday afternoon to recharge our relationship batteries! And it worked!

Sunday, September 27, 2009

Not much new over here. I am still studying lots for my statistics exam. I have now started to dream about data analysis, can't wait to have it done and over with.

Healthwise I am trying to fight off a cold. I need all my capacity for studying (and also working), no time to be sick.

I have also re-adjusted my diet. Less fiber, lower fat content equals a lot less nausea! I am so relieved! I have not needed anti-nausea medication in almost a week. Unfortunately eating a low-fat diet also means less calories and I am trying to do my best to compensate with more tube feeds during the night.

I am wishing for lots of strenght and energy for the next week to be able to continue studying for my exam.

Monday, September 21, 2009

Today is not my day

Technically my "not day" began shortly before midnight with me waking up in a puddle of tube feeding formula. The tube-feeders among you will know exactly what happened! Darn that non-luer lock connection between my giving set and the button extension sets. Stopped the pump, got up, undressed, rinsed the awful sticky formula off of my butt, put clean pjs on and went to bed again.

Two hours later my pump starts alarming, but it is not the usual "got a kink in my line" alarm, no, it was a low battery alarm, something that never happens to me because I always know after how many nights I have to recharge my battery. Low battery alarm leaves me with only a few minutes to plug it in, before the pump switches off and erases my already infused volume. Not a good thing if your formula is so rich, your pump won't recognize an empty bag or giving set and keeps on pumping air into your stomach until the change in pumping noise wakes you up. (I always have to work with a goal volume.)
So there I am at 2 AM in the morning trying to plug in my cord into my feeding pump and this is already very tricky when I am awake.
Back to bed.

Two hours later my bag is empty, and I have to get up again to flush my tube and disconnect the button extension sets. Back to bed.

At 6.30 AM I wake up to take my meds.

At 7.00 AM my alarm clock rings and after only hitting snooze once I manage to get up for good.

On my way to the bathroom my fiance informs me that there is no hot water and our gas boiler is displaying an error message.
No hot water for me this morning.....

And since I am the one who fixes things like this in our household it is up to me to get the gas boiler running again. No luck so far.

No, really, it is not my day.

Saturday, September 12, 2009

Motherly feelings or the clock is ticking

I am so excited! I got to see my best friend's twins today. They had been born premature and are now finally out of the NICU. I have only visited them once before when they were just a few days old and still really fragile and today was so different from back then.

One of the twins, Simon, is going to be my god child and I got to hold him today for the very first time. I held him for more than an hour and I also got to burp him after he had finished feeding. Having this tiny human being lying on my chest and stroking his back felt so good!

Darn those motherly feelings that come up during moments like these.... I guess my clock is ticking big time.

Logically I know I have to finish my degree first, work a bit and get to a better weight before I even start to think about starting a family with M, but emotionally things are looking a lot different.

I can't wait to be a Mum one day! And I don't care if I am going to be "Tube Mom", as long as it makes me healthy enough to have children.

Friday, September 11, 2009

My last exam

After taking a bit longer than the average psychology student to finish my degree due to all my health troubles an end is finally in sight. I am writing my thesis, I have taken all required classes and am now studying for my LAST exam!!!

It always takes a bit of convincing myself to start up studying again, but I have gotten over the first few days of having to make myself study and am now actually enjoying it.

Now you might think I am slightly crazy when I tell you that I am actually enjoying studying for a statistics exam, but I am. I have to take so many statistics exams already and I hated all of them, but this prof based his lecture on a really cool statistics book - Discovering statistics using SPSS - and sex, drugs and rock 'n' roll by Andy Field and I am telling you I am finally getting statistics. Field's book has given me a whole new insight on statistics and makes me even laugh at times - unheard of any statistics book I so far had the "pleasure" of reading.

I was really dreading taking the exam and also getting started on my statistical data analysis for my thesis, but things are getting clearer and clearer every day and I think I will do just fine.

Tuesday, September 8, 2009

A doctor's handwriting

Usually my dietician writes all my prescriptions for my tube feeds and supplies, but she is on vacation right now, and therefore I went to see my family physician yesterday to get the prescriptions from her.

Usually all the prescriptions are written on the computer and printed and therefore easy to read, but because I use a different insurance company for my tube feeding stuff she had to hand-write my prescription.

I scanned it and mailed it to my insurance company yesterday and received an e-mail back this morning telling me that unfortunately they cannot accept the prescription because they cannot decipher my doctor's handwriting.

I can't blame them, can you? :-)

Monday, September 7, 2009

What not to do at my wedding

M and I went to a wedding on Saturday and actually M was the best man of the groom. The bride and groom had the whole wedding planned down to the minute and actually had the bridesmaids and groomsmen organize the wedding.

M had invested lots of time and effort into this wedding and I kept getting angrier and angrier. I just didn't understand how someone could order their bridesmaids and groomsmen to organize the whole wedding. Furthermore, bride and groom spread out their wedding over three weekends - meaning they had stag and stagette one weekend, had their civil wedding the Saturday after and their church wedding the next Saturday.

I have a workaholic fiance and my weekends with him are what keeps me going through the week, not having a real weekend with him for three weekends during the summer really pissed me off, to be honest.

I ended up not attending the wedding itself - just the reception. I am very tired all the time right now and really have to conserve my energy, and knowing that I would have to stay up late, I rested in the afternoon and met up with M at the reception at dinner time.

I actually found something to eat, chatted with M and actually enjoyed myself - that is, until the live music started. The musician (who was way past his prime) started off with all the classic love songs, moved over to some really bad German folk type. The music was really loud as well, we were seated at the table that was the furthest away from the musician and it was still almost impossible to carry on a normal conversation with your seat neighbour. I am quite musical myself and have a good ear for music and I really hurt - so many wrong tunes.... and when he took out his saxophone and I really started to suffer.

But I have to be grateful as well because I now know what not to do at my wedding!

Friday, September 4, 2009

Fall is in the air - and I am baking

Fall is coming - and I have started baking! Temperatures hovered at 18 °C today, quite a difference to the 28 to 30 °C we kept having for the past few weeks.

Even though I absolutely love to bake, I have to take some time off baking during the hot summer months due to the fact that we have a very tiny and windowless kitchen - if I crank up the oven on top off having an inside temperature of 28 °C.......

But I am on a baking spree tonight! At the moment I have ginger snap cookies in the oven, in the meantime I have prepared mashed pumpkin for some pumpkin bread and I think I also want to make some blueberry oatmeal bars.

The only downside is that I am feeling quite nauseous from having dinner earlier, and maybe the lovely smell of freshly baked ginger snap cookies isn't exactly contributing to me feeling better, but I don't care because I am having fun and at least it keeps me distracted a bit from my nausea.

2 1/2 hours later - these are the results:

Wednesday, September 2, 2009

A triple yeah for the medihoney

I have now treated my stoma infection with medihoney antibacterial honey for exactly three weeks. I have been really careful with my stoma, always washing my hands before touching it and using the medihoney twice a day.

I should have really taken some photos before I started the medihoney treatment because the difference is incredible. My stoma site looks really good and it doesn't hurt anymore!

Like I said - I don't have any before-photos - but here is an after-photo:

A nice looking stoma, right?

I will continue putting the medihoney on my stoma at least for another couple of weeks. I might inquire about getting the barrier cream as well - maybe it would helpt to protect the lower part of my stoma - due to gravity more stomach contents leak onto that part.

Tuesday, September 1, 2009

A clean bill of health for my 17 year old feline

I took Laura to the vet for a check-up today, because it's been more than a year already since her last check-up.

I am very excited to report that my very ancient 17 year old cat that has been my feline companion since I was 14 years old and that has been with me through all the bad teenage years is exceptionally healthy! Perfect teeth, good heart, no kidney problems, her tummy problems under control thanks to her daily steroids - just a bit of joint problems and hearing loss.

I am so happy - last year she was really sick and had lost so much weight - just skin and bones and we really thought we were going to lose her, she was then diagnosed with chronic gastroenteritis and put on steroids, stopped throwing up and gained back all the weight she had lost.

By the way - we are aiming for 20 years at least!

Monday, August 31, 2009

The quest for the perfect banana

Being fructose intolerant means that I can't eat most fruit. But what makes the situation even more complicated is that I am histamine intolerant as well and lots of fruit contain biogenic amines like serotonine or dopamine - something that someone with histamine intolerance should definitely stay away from. The thing is that most fruit that are low in fructose are high in biogenic amines or are histamine liberators (another no-no).

Even though bananes are high in serotonine, they are quite low in fructose and every once in a while I let myself have a banana as a treat.

But finding the perfect banana can be quite a quest!

The perfect banana for me is not too green (because bananas on the green side are not very easy to digest) and too ripe either (because the riper a banana the more serotonine it contains).

I really wanted to have a banana with my dinner today and so I went out this afternoon to find my perfect banana - half an hour and four grocery stores later I finally found an acceptable specimen and am now eating polenta and spelt porridge with my perfect banana!


Sunday, August 30, 2009

Visiting Europe's biggest birds of prey breeding center

M and I went on a hike today (well, I guess you could say it was more of an uphill-walk :-).

We walked along a lovely little creek through an amazing beech tree forest.

We then visited Europe's biggest birds of prey breeding center. We got to see over 30 different kinds of birds of prey.

After a lunch break we walked back down through the forest - a different route than coming up.

Other than my allergies being really awful and me having to stop quite often to blow my nose (good excuse for a little break though :-) M and I really enjoyed ourselves. Sunshine, blue skies, but not as hot as in the past week - perfect early late summer weather to go hiking.

Thursday, August 27, 2009

Wedding plans

M and I met with our wedding planner for the first time tonight and the meeting went really well!

We booked a "Do-it-yourself-package" - meaning that we will be planning the wedding with her but organize it ourselves. Having the help and knowledge of a wedding planner really relieves a lot of stress on my side - and M's probably too.

We talked about the wedding cake too and the wedding planner actually came up with an idea for a wedding cake that I can eat too!!!

I am so excited!!!

Monday, August 24, 2009

Sense of smell

When I lived in Canada I used to love being able to smell the ocean every day. To this day smelling the ocean immediately reminds of Canada and inevitabely puts me in a good mood.

When M and I stayed at the ocean for our summer vacation in Italy this year I noticed something very odd - every time M said to me "Can you smell the ocean - it's a really strong scent today?" - I was not able to smell anything or maybe only some faint traces of ocean scent - but far away from the strong scent M was talking about.

Well, I guess it has finally happened - I have had severe pollen allergies for many years now and I guess it has affected my sense of smell now.

Sunday, August 23, 2009

Doing my accounting makes Aaliyah one happy kitty

Aaliyah loves it when I do my personal accounting. Once I have entered the bill in my excel sheet I always crunch it up and throw it on the floor.

Friday, August 21, 2009

Friday night update

It's Friday night, M is out at a bachelor party and it is far too hot in my apartment to be thinking of going to sleep anytime soon - perfect night for writing a long overdue update on what has been going on the past few weeks.

Well, I think I blogged very extensively about all my frustration regarding that darn balloon button. I finally made the decision to change it back to a peg-tube and then starting the next day everything was different. My stomach switched back into low-stomach mood and fewer stomach contractions also means fewer button pulling.

I also saw my dietician last week and she told me that stoma infections can present themselves with some pretty odd symptoms and I had it checked out. It's now been more than a week that I have been treating my stoma with medical honey (by the way - I found out today that I had some pretty nasty stuff grow on the culture and if I was immunosuppressed in any way I would have had to take strong antibiotics - thankfully I am quite healthy right now and therefore the ID-doc is content with me using the medihoney). My stoma is looking a lot better - showed it to my dietician today - she hadn't seen it since last Wednesday and she could totally see a difference (for the better :-)!!! My dietician also encouraged me to maybe look into the non-balloon button thing again, because she really doesn't want me to go back to the peg-tube. Prof H never called me about a possible appointment anyway - he actually did talk to my dietician and told her that I should just get used to the situation (that pissed me off a bit).

But - and I hardly dare to write the good news - with my stoma hurting less, I can actually tolerate the button a lot better. I am still having very bad stomach days, but I have had a few better days inbetween and I was able to tolerate the button on those days as well. I am able to sleep through the night again without getting woken up due to uncomfortable button pulling and I am able to sleep in on weekends again as well without getting nauseated due to the button.

I know that the non-balloon button might still be an option if things go downhill again. My dietician did not talk to Prof H about that, but I know she would stand up for me and does not think that I should just tough it out.

Tuesday, August 18, 2009


Saw my dietician last week - she had been on vacation through all my button-troubles the week before. She told me that she had already mailed Prof H asking him for a call-back regarding my situation. By Wednesday he hadn't called her back so we both assumed he was still on vacation.

I showed her my stoma site and she was not impressed at all and actually managed to have Prof. Th. (THE infectious disease doctor of the Vienna General Hospital) have a look at it (even though he just had a patient of his own ... she sure has connections). He ordered a culture and told the nurse to put honey on my stoma and to let me take the tube of medical honey home with me.

I have now been putting the honey on my stoma for a six days now and it has definitely gotten better. The red dots that started to develop 10 days ago are now gone and the stoma site is less tender already.

I found out today that my culture did grow out some stuff - but my dietician told me that Prof Th. thinks that as long as my stoma has not gotten worse over the past week the Medihoney is the right treatment.

I have read up on it on the internet and I am impressed! It really seems to be powerful stuff!

Monday, August 10, 2009

To peg-tube or not to peg-tube - that is here the question

I have had a very exhausting and emotional week. The button continued to give me so much problems and suddenly my whole life seemed to be about how to tolerate the button, always worrying about the next time a "pulling-in-episode" would start again and did I have my syringe with me - just in case I needed to take out the water of the balloon, if I couldn't stand it any longer without getting sick? Because this is what my life suddenly looked like:
  • in the early morning hours (usually around 6 AM), the pulling-in-sensation started and that would lead to relentless nausea - unless I unblocked the button with a syringe
  • during meals my button would get pulled in and stay that way making it impossible to finish my meal - unless I unblocked it
  • before meals it sometimes would get so bad that I had to unblock it in order to have the time to make myself something to eat
I started e-mailing with a very helpful AMT technician who had me experiment with different fill amounts of the button - but nothing helped.

On Wednesday I finally broke down (almost). I was visiting my pregnant friend in hospital, she was on bed-rest and I come to eat lunch with her and keeping her some company. While I was eating lunch a new patient was admitted to her room and I was asked to leave the room in order for the nursing student to be able to help the (very pregnant) woman undress. I was in the middle of eating my sandwich - therefore I just took my sandwich and left the room. As I was waiting outside my button started to be pulled in so badly and it wouldn't stop - I had left my bag with my emergency syringe in the room and therefore I had no means to make it stop. I had a really hard time stopping myself from starting to cry right there on the spot. I guess that was the last straw for me.

In the evening I emailed Prof H, who emailed back telling me that going back to the peg-tube was the only option. A peg-tube has a flat internal bumper as opposed to a balloon. It has to be placed endoscopically which means I will have to be sedated again (there is no way I want to be awake for that - he will put the tube complete with the internal bumper down my esophagus and then pull it out through the stoma :-).

Lots of tears later I decided to go with the peg-tube and give up my low-profile design.

And then it happened: Friday morning my stomach decided to switch into slow-stomach mood once again and of course with my stomach emptying slower there are less stomach contractions and that means I can tolerate the button better.
I suddenly can sleep in again without getting woken up by the darn button pulling. I have also started to use a different dressing that provides a bit of padding for the button and therefore it being pulled in hurts less on the stoma outside as well.

On the downside of course slow stomach means nausea as well - a no-win-situation actually.

Of course the events of the past few days have made me doubt my decision going back to a peg-tube once again. There is a psychological phenomenon - "post decision reactance" which basically means if you have to decide between two alternatives A and B and you decide to go with A - suddenly all you can see are the disadvantages of A and the advantages of B - the alternative you didn't go with.

Well, obviously I suffer from a very bad case of "post decision reactance" :-).

My stoma site looks quite bad, actually ever since changing to a button device it has been looking worse and worse. I now have a bleeding granuloma that obviously always gets worse when the button gets pulled in due to the pressure (even with the dressing inbetween), I have started to develop red dots that ressemble a kind of allergy - the dressing has a "foil" that is supposed to go on the wound and the red dots started to come up once I started using the new dressing - I am very sensitive to all kinds of tape therefore my suspicion is that the cause is the new dressing.

Too bad my gi-doc is not around the corner :-). Would love to sit down with him and talk everything over personally.

To top it off by the way - after a month of having no diarrhea - I am having a malabsorption day as well. Curious to know if that's related to the "slow stomach" phase.

Anyway I am off to my family physician now to show her my stoma.

Monday, August 3, 2009

A trip to Ikea equals a weekend of work

On Friday night just before we were off to bed M suddenly fantasized about getting rid of my old closet and dresser and buy a PAX-closet for our bedroom matching the PAX-closet he already has in our bedroom. Instead of going to bed there we were suddenly both fantasizing about more room for my clothes and M's clothes respectively (because a lot of my clothes kept ending up in his closet because of limited clothing space in my closet) and some space for all the things that still end up in corners not having a set space to be put away.

So off we were to IKEA on Saturday morning. M and I are well-versed IKEA shoppers, came prepared with our own pre-planned PAX combination, used all the short-cuts to get through the wast IKEA halls as quick as possible - still managed to buy stuff that we hadn't planned to buy - always happens at IKEA :-).

Getting the large furniture packages onto our shopping cart with me having hurt my back while sleeping the night before was the first challenge. Knowing that the real change was still ahead of him M had to fuel up on a hot-dog.... because .... have you ever tried putting over 200 kg worth of furniture packages in a very small, if not very tiny car - my LUPO? M and I have already packed a few IKEA trips into our car but never as much as this time. Like I have mentioned in my vacation post before M is a master in packing my car - but still - in order for the packages that mostly were over 2 m long to fit into my car he had staple them onto the dash-board. Even though we couldn't close the boot of the car M really packed everything in - except me .... I had to take the bus and subway back home :-)!

So yes, we spent this weekend assembling our new bedroom furniture - by the way - this weekend was one of the hottest weekends this summer so far - can you imagine how incredibly hot it was in our apartment?

But we finished it last evening - everything is really tide now and looks so grown-up! Our apartment keeps losing its students' flair and becoming more and more a "grown-up" apartment.

Saturday, August 1, 2009

Still button troubles

I am really desperate. The button situation is not getting any better. I have had to de-block my button on a daily basis because the pulling gets so bad at times. It makes me feel so sad and helpless and furious at the same time.

I just want to scream!!!!!!

I know I have to send an e-mail to Prof H again on Monday and inform him about my problems and ask him to look into a better solution for me.

This is not how I want to feel every day.

Wednesday, July 29, 2009

Button troubles

I am still having button troubles. I now have the AMT Mini one balloon button and even though I like it a lot better than the Mic-Key I am still having problems with it.

The button/balloon is being pulled inside through my stomach contractions frequently and that makes me feel very desperate - for some reason too much pulling leads to nausea.

I have the 3.5 cm button right now and it does feel right, but I can still pull it out quite a bit in order to get the balloon to be really snug to the stoma - I have no idea if a size down would feel better - if that would help with the pulling of the button as well - I am just so sick and tired of feeling ill when I do get hungry. When the pulling in of the button starts I have about 10 minutes before I get nauseated - I don't always have time to eat right there and then - just because my stomach starts hurting with all those pulling sensations.

My gastroenterologist has never had a patient with a button before even though he has lots of g-tube patients. Neither has my dietician. I asked my gastro-doc last week if a non-balloon button would be better for me - if my stomach peristaltic would have less effect on a non-balloon button and therefore would feel better. He hadn't even heard about a non-balloon button before. I gave him all the information I had printed out from the AMT website but he didn't know if that would work better for me.

Lisa - from AMT - you once commented on one of my button trouble posts - do you have any insight on this?
I guess my specific questions are:
- is lots of pulling in still a sign of a too-long button
- would a non-balloon button work better for me
- is the internal bolster of a non-balloon button smaller than the balloon and therefore less likely to be pulled through my stomach peristaltic?
- is there a time-frame before a non-balloon button can be placed (my gastro-doc was worried that the smaller internal bolster would mean that more forces are exerted onto the stoma walls if I accidently pull on it (from the outside)?

If anyone has any answers - please comment or mail me at juhint@hotmail.com - am a bit desperate.

Tuesday, July 28, 2009

Altitude euphoria

M and I decided to extend our vacation and took off for my parents' house in Linz on Saturday.

Sunday at lunch we talked about what we wanted to do in the evening. My parents already had tickets for the theather and therefore M and I had an evening to ourselves.

Linz is the European Culture Capital of 2009 and lots of special exhibits and artsy stuff are displayed all over the city. There is one exhibit that is especially intriguing - "Altitude euphoria - art above the roofs of Linz". The title is to be seen literally - because this exhibit takes place on the roof (and beyond) of a 14-story-down-town parkade.

The thing is - I am not that afraid of heights - but I get very, very dizzy!!! But I braved it and followed M up the wooden stairs....

The really cool thing though is the ferris wheel on top of the parkade.

It is up on the 14th floor and it goes really fast (rounds twice in one minute) - needless to say M got to go by himself!

I loved the moon that night...

Friday, July 24, 2009

A vacation well deserved

M and I had the best vacation ever! The sun was shining every day, the sea was refreshing, but not too cold and don't let me get started on the wonderful sandy beach!
I love Italy!

Our main activity was sleeping - M had worked so much over the past few months - me too plus all that emotional stress - we really were exhausted! But is there any better place than sleeping on your sunbed on the beach - listening to the waves and the children playing happily around you.

Buttonwise I had quite a bit of troubles - but I will post about that separately. In the end I didn't let it get me down and enjoyed my time with M.

There are so many couples that start fighting during vacation - it is the other way round for us. We fight the most in the weeks leading up to our vacation because we both have so much work left to do, but once we are on vacation and we start to relax the love between us just explodes and we have a really peaceful vacation!

Six swans always swam fearlessly and determined through all the bathing people. At night the slept at the beach.

Tube Girl walking on the beach - enjoying the sand between her toes....

Tuesday, July 14, 2009

Tube Girl doesn't travel light!

M and I are all packed and ready to go - tomorrow morning we will leave for our vacation in Italy.

I have a small car - actually a very small car. It is a VW Lupo and let me tell you - Tube Girl doesn't travel light! With all my tube feeding and tube care stuff it does add up a bit. Thank god M already has extensive experience in packing up my very small car - but even he felt a bit overwhelmed at the amount of suitcases and traveling bags that I piled up for him to take down to the car.

In our very small car - he packed:
  • two sun beds
  • one small sun shade
  • two small suitcases
  • three travelling bags
  • one tube feeding back-pack
  • one paper bag with towels
  • one dust buster (you might laugh at that - but we will be staying in a trailer and last year I just could not get rid of all the sand we kept bringing into the trailer with just a broom)
  • a bag full of shoes (I have to be able to choose even when on vacation, right?)
  • my nordic walking poles
  • six small torches
  • one camping barbecue
And yes - there is still some space left for us as well!

Monday, July 13, 2009

Look at those cute creatures!

M and I spent the weekend at my parents' (Mum and stepdad) house. Mum has a little garden and she loves to tend to it. Yesterday I sat beside her on the patio and kept her company while she was doing a bit of weeding.

While she was weeding she came across an empty flower pot filled with quite a bit of water from all the rain we had. She called me over telling me to come have a look at the cute creatures that were swimming in the water in the flower pot. I had a look as well and Mum and I just couldn't get over how funny their movements in the water seemed to be and were quite in awe of God's little creatures.

Mum then called my stepfather out in the garden - asking him if he knew what kind of creatures they were - and at the same time telling him that he most likely wouldn't know either. My stepfather has an incredible general knowledge and he just needed one look at the flower pot and said to us: "I know exactly what they are - they are mosquito larvae!"

Mum and I screamed out in horror - there we were - admiring hundreds of potential blood-sucking mosquitoes! Still Mum didn't want to be the one emptying out the flower pot and being responsible for the death of hundreds of potentials mosquitoes and my stepdad had to do the dirty deed!

Thursday, July 9, 2009

I am not ordinary - and neither are my cats

I have three cats. My senior feline lady Laura is already 17 years old and almost deaf. Her main activitiy is sleeping (and puking - she is my "puke cat").

Then there is Aimee, who just turned three this spring. She is our little princess - both M and I really spoiled her when she was a kitten and she now has quite the attitude.

Our youngest cat is Aaliyah and she just turned one and is still quite the handful, but very lovable and cuddly nevertheless.

We realized very soon that Aimee had some strange sleeping habits:

Like this...

And this...

Or this...

And she still sleeps like this...

Aimee and Aaliyah are from the same farm and are widely related. Aaliyah loved Aimee from the moment she set eyes on her and learned a lot of behaviors from her (good ones and not so good ones).

And from being a kitten on Aaliyah also slept like this...

And this...

And now at one year old she still sleeps like this...

Is this simply in their genes or is Aimee the truly weird sleep position cat and Aaliyah is just the copy-cat?