Thursday, December 29, 2011

For cat lovers...

If you are not a cat lover stop reading right here. You'll probably think this story is utterly disgusting. If you love cats and have the pleasure of sharing your life with a feline beauty, you might still think that the story is disgusting but you might also find it very funny.

Aimee is my "I eat everything I am not supposed to" cat. From dental floss to hair ties. M and I have to be really careful what we have lying around. The dental floss story is worth a blog post itself. When we came back Monday night from spending christmas at my parents Manu noticed some chewed up aluminium foil on the floor of his study. He had eaten a kebap the Friday before and not thinking of our feline garbage bin detective mindlessly discarded the aluminium wrapping foil in the garbage in his study. Aimee of course had searched through the garbage and got lucky.

Fast forward to Wednesday afternoon. I was sitting in the dining room working on the computer when I hear a cat puking terribly. M in turn started yelling for me to come quickly and help me. The scene that unfolded itself in the living room was priceless. Cat puke everywhere and poor little Aimee hunched over M's shoes throwing up even more. Knowing that Aimee only throws up like this when she has gotten into something inedible I did what any loving cat Mum would do. I put on a pair of disposible gloves and searched my way through Aimee's puke and found the culprit in the first big puddle - M's kebap aluminium wrapping foil. Then I started cleaning up the mess, first the big puddle in the study, then the trail of splattered kitty puke all the way from the study through our living room into our hallway.

I asked M how Aimee managed to make such a big mess. Turns out that when she puked up the first big puddle she threw up on her front paws and scared herself so much that she ran away while she was still puking. Poor kitty.

The morale of the story - always, always watch what you put in open garbage cans if you have a little Aimee at home.

PS: When M and I went to bed later that night we realized that Laura (the senior) had puked into our bed - how lovely....




Thursday, December 8, 2011

White horse - the sequel

I didn't get the other job either. I found that one out one day before my last day of work. It made me feel very sad and desperate for a little while. So yes, white horse, the sequel.

I have been officially unemployed since December 1st, though for now I consider it more like a vacation. I have worked straight through the past 13 months with only week of vacation inbetween, I definitely deserve some relaxation time now! Of course, as it seem to always happen, I got a really odd cold virus on my third day off work. I did not get sick all the time that I worked at the hospital for the past six months and the minute I am off and am starting to relax - bang - there it comes ;-)! Started with a sore throat on Saturday, progressed to general achyness and fatigue and the cold didn't set in until yesterday. Very odd.

Today Manu and I are celebrating our 9 year anniversary! And since he has a touch of a cold too, we will be snuggling up in bed and watching movies all day!

Saturday, November 26, 2011

White horse

I didn't get the job at the neuro rehab clinic. Not that I actually wanted it, knowing that I could not do the commute without a car (Manu needs it most days).

Still, I got all insecure - wanting to know what they did not like about me. Was it my lack of experience? My personality? My tube? What did I say during the job interview they didn't like? Was it my tube?  What should I have done different? Questions like these kept spinning in my mind - followed by "What if I never ever get a job as a psychologist?"

"White horse" is my answer to those questions at the moment. If a negative thought like this pops into my mind I say to myself "white horse".

Why?

Read this Zen story to find out...

There was an old man in a village, very poor, but even kings were jealous of him because he had a beautiful white horse…
Kings offered fabulous prices for the white horse, but the man would say, "This horse is not a horse to me, he is a person. And how can you sell a person, a friend?". The man was poor, but he never sold the horse.
One morning, he found that the horse was not in the stable.
The whole village gathered and they said, "You foolish old man! We knew that someday the horse would be stolen. It would have been better to sell it. What a misfortune!"
The old man said, "Don't go so far as to say that. Simply say that the horse is not in the stable. This is the fact, everything else is a judgment. Whether it is a misfortune or a blessing I don't know, because this is just a fragment. Who
knows what is going to follow it?"
People laughed at the old man. They had always known that he was a little crazy.
But after fifteen days, suddenly one night the horse returned. He had not been stolen, he had escaped into the wild. And not only that, he brought a dozen wild horses with him.
Again the people gathered and they said, "Old man, you were right. This was not a misfortune, it has indeed proved to be a blessing."
The old man said, "Again you are going too far. Just say that the horse is back…who knows whether it is a blessing or not? It is only a fragment. Your read a single word in a sentence – how can you judge the whole book?"
This time the people couldn't say much, but inside they knew that he was wrong. Twelve beautiful horses had come…
The old man had an only son who started to train the wild horses. Just a week after he fell from a horse and his legs were broken. The people gathered again and again they judged.
They said, "Again you proved right! It was a misfortune. Your only son has lost the use of his legs, and in your old age he was your only support. Now you are poorer than ever."
The old man said, "You are obsessed with judgment. Don't go that far. Say only that my son has broken his legs. Nobody knows whether this is a misfortune or a blessing. Life comes in fragments and more is never given to you."
It happened that after three weeks the country went to war, and all the young men of the town were forcibly taken for the military. Only the old man's son was left, because he was crippled.
The whole town was crying and weeping, because it was a losing fight and they knew most of the young people would never come back.
They came to the old man and they said, "You were right, old man – this has proved a blessing. Maybe your son is crippled, but he is still with you. Our sons are gone forever."
The old man said again, "You go on and on judging. Nobody knows! Only say this, that your sons have been forced to enter into the army and that my son has not been forced. But only God, the total, knows whether it is a blessing or a misfortune."
Judge ye not, otherwise you will never become one with the total.
With fragments you will be obsessed, with small things you will jump to conclusions.
(as told by Osho)

So yes, "white horse". Things happen for a reason. A much better job might already be waiting for me. I just have to be patient and don't judge!

Thursday, November 24, 2011

This made my day

My best friend and I mostly text throughout the day, as I don't really have time to talk on the phone while I am at work, but always find the time to send a quick text. And my friend who is a stay-at-home-Mum with two-year-old twins and an almost 3-month-old sometimes simply wants to share stuff with me.
I don't get to see the twins very often, usually only every three to four weeks, as my friend lives outside of Vienna, and just recently they have started calling me "aunt" and asking for "Lula"....

Yesterday we were sending a few texts back and forth when suddenly I got another text saying:

"My boys obviously know that I am usually texting with you. As I was just writing you a text, they asked me "where is Lula?" I answered - "at work". And then "where is Man (Manuel)" - again I replied "at work". ;-)

This totally made my day!

Thursday, November 17, 2011

Another job interview

I am having another job interview tomorrow. Keeping my fingers crossed - it would be literally just around the corner. What a change to a three-hour-commute daily.... I would love to have some more time for myself and for my relationship with M again.

Saturday, November 12, 2011

Flare :-(

I haven't been in a real flare for a few months now, almost forgot how awful it feels to be nauseated all the time. Looking back it probably started last Sunday, and maybe if I had taken better care of myself and not given into eating some stuff that I usually don't eat in the past week, I might have gotten away with just a mini-hick-up. It came it the most inopportune moment, as I had to travel to Innsbruck on Thursday for a two day Neuropsych class. Yesterday it got so bad that even water and tea hurt me. I also had so much pain in my lower body. I even had to turn down my feeding rate yesterday evening. I knew that I would only get myself out of this flare if I stay away from food for the next few days, and thankfully as of a few hours ago, I am starting to feel a little tiny bit better. I am on my way home to Vienna right now. Tomorrow I will take it easy and maybe spend a day on the couch (or in bed) with the kitties. And hopefully I will feel better for work on Monday.

I have been having a really hard time in the past few weeks with not being able to eat like everyone else. I have discussed it endlessly with M, trying to figure out how I could eat more orally without getting sick. M doesn't encourage my oral eating because he has to deal with the consequences as well (I usually eat on weekends, so as not to have me feeling sick interfere with work - but that also means that M has to deal with me being sick on weekends when he wants to spend some quality time with his wife.)

M of course couldn't resist yesterday evening when we talked on the phone - being very sarcastic and telling me that we should really talk about me eating more orally.... "leave me alone" I said - the thought of food adding to my nausea.... I really am grateful about my feeding tube, even though I do have my moments. It's just that sometimes I simply crave normalcy.

Sunday, November 6, 2011

Sunday night update

My job interview went alright. Even though I am not as sure anymore if I would be able to take it if they offered it to me. The problem is that M and I share a car and I won't be able to take the car every day. I expected work to begin at 8 AM, that way I would have been able to take the subway/train having to leave at the same time that I leave now. But I was informed that work begins at 7.30. This means I would have to leave at 5.15 in the morning (and getting up at around 4.30). I won't be able to sleep on the train as I have to switch trains a few times. I honestly don't think that I physically can do that. Even at my current internship when I am out and about 12 hours a day I have hardly any energy left for fun stuff. And on the weekends I end up sleeping half the time to try to recouperate (like today - I stayed in bed until 3 PM, reading, surfing the internet, and sleeping...). I have been meaning to go to the gym for weeks, but have not had the time nor energy to do so.

On a more positive note - the apartment is almost finished ;-)! Only a few more cupboards and the storage room to organize! We have even hung up our pictures! It really feels good to live here and we love our new place. The cats still spend time on the balcony, albeit a lot less with the colder weather. Sometimes they can be very, very annoying: "I want out!" "Let me in!" - in a matter of minutes.... Yesterday we almost forgot Aaliyah on the balcony. It wasn't until we went to bed and couldn't find her that I had a look outside and found her all huddled up in the cold. Poor kitty... I am curious to find out if they will grow a thicker coat this winter, now that they are spending some time in the cold.

Here is a photo of my two little buggers:

Aaliyah loves to sleep underneath the blanket....
In this picture she is obviously trying to be close to Aimee.


Tuesday, November 1, 2011

Job interview coming up

Only one month left in SP and then off to new adventures ;-). I already have begun to search for jobs, not that easy in Vienna. But - I have a job interview coming up for a temporary position at a neuro rehab clinic. I really, really hope that they will like me. I would really love to work there, even if it is only a temporary position. And I am so ready to finally earn some money, especially after those past 12 months of working a 40h job with almost no money in return.

I will still need to commute, but not as far (if I get to take the car, if M needs it and I have to take the train it will be even further). But I really hope that even though I will be out and about for so many hours of the day again that I will be able to find more time to take care of myself. My dietician really wants me to build up more muscle mass, but I have not been finding the time at all to go to the Gym.

My tube site is looking really well, hard to believe that I have only had this new tube for two months. The very tiny bit of granulation tissue that I had is starting to subside and therefore leakage is down to a minimum. I am very proud that I have another good looking stoma to show off.

All in all I am doing quite well, still thriving on my tube feeds, having only minimal symptoms as long as I stay away from food.

Monday, September 26, 2011

How to ... / Wie man ...

... put Creon down your tube / Kreon sondiert

When it was decided that I needed to put Creon (pancreatic enzyme supplements) down my tube, I researched the internet forever to find good guidelines on how to best do that. Creon comes in tiny micro pellets that are horribly static and can't be dissolved in water. Just putting it in a syringe with a small amount of water does not work at all. It took me a while to find out the best way and I want to share my experiences.

Hier meine persönliche Erfahrungen, wie man am besten Kreon sondiert. Kreon ist ziemlich statisch und lässt sich in Wasser nicht auflösen (bzw. soll es ja, wenn man in den Magen sondiert, nicht aufgelöst werden) - einfach in eine Spritze mit Wasser und rein in die Sonde, geht überhaupt nicht, denn das Wasser geht durch, während die Mikropellets einfach in der Spritze bleiben.

I have a Freka PEG FR15 with a luer lock adapter as a J-tube, therefore I have to attach a funnel adapter. As to the Creon - I have tried different strengths and have found that Creon 10.000 - it has the smallest size of micro pellets of all the different Creon strengths availabel - works best.

Ich habe eine Freka PEG CH15 mit einem Luer Lock Adapter als Jejunalsonde. Um Kreon sondieren zu können, schraube ich immer einen Trichteradapter auf die Sonde. Ich habe verschiedene Kreon-Stärken ausprobiert und Kreon 10.000 funktioniert am besten, weil es die kleinsten Mikropellets hat und eine Kapsel auch genau die Dosis ist, die super in den Trichter-Adapter passt. Gibt man zu viel Kreon in den Trichter-Adapter, dann passt die Spritze nicht mehr gut drauf.

This is my feeding tube with the funnel adapter attached.
 Das ist also meine Sonde inklusive Trichter-Adapter.

Flush the tube with warm water first.
Zuerst die Sonde mit etwas warmen Wasser spülen.

Then hold up the Creon capsule with the red cap on top and gently screw off the red cap.
Dann die Kreon-Kapsel mit dem roten Ende nach oben halten und vorsichtig das rote Ende herunterschrauben.
Empty the Creon capsule into the funnel adapter.
Die Kreon Kapsel vorsichtig in den Trichter-Adapter entleeren.


The Creon micropellets are very static and like to stick to the plastic of the funnel adapter. Therefore you have to gently massage the funnel adapter between your finger tips while at the same time putting water down the tube. This is the most important step. If you don't massage the funnel adapter, the micropellets will not be flushed through.
Die Mikro-Pellets sind sehr statisch und haften gerne am Plastik des Trichter-Adapters an, daher 
muss man den Trichter-Adapter vorsichtig zwischen den Fingern massieren, während man mit Wasser nachspült. Das ist der wichtigste Schritt!!! Die Mikropellets sind so statisch, dass sie einfach im Trichter-Adapter hängen bleiben, wenn man den Adapter nicht gleichzeitig zwischen den Fingern massiert.

My tube has a slight bend and narrowing when fixated with the external fixation device. Sometimes the micro pellets can't be flushed through (no matter how much water you use), if I keep my tube straight like in the above picture, the micro pellets will not get stuck.
Meine Sonde hat einen kleinen Knick und eine Verengung, wenn sie mit der externen Halteplatte fixiert ist. Die Mikropellets bleiben oft dann genau dort stecken und können nicht weiter gespült werden. Mittlerweile weiß ich jedoch, dass ich meine Sonde ganz gerade halten muss, wenn ich nachspüle, dann funktioniert es bestens.

Clinical psychologist and health psychologist

I have finally completed the first part of my post-grad-education, and I am now officially able to call myself "Clinical psychologist" and "Health psychologist". Yeah!!!!
I am very proud of myself!

And because I love to study, I have already started my next post-grad-degree - Clinical neuropsychology. I had my first two courses this past weekend. 16 hours done, 132 hours to go :-).

Most of my classes are in Innsbruck (five hours from Vienna), I am very lucky that M's parents live only 20 minutes away and I can stay at their place. (And get a ride from my mother in law in the mornings...). Makes it a lot easier (and cheaper for me). This weekend I learned about aphasia, very theoretical, but very interesting. Next up - Parkinson Disease on Oct. 14th :-).
I love neuropsychology!

Sunday, September 18, 2011

I realized this morning that I haven't posted in a couple weeks now. That's what happens when I am back to work :-).

My stoma is looking really good, almost no leakage. I was having some troubles with granulation tissue coming up, but thanks to St. John's wart oil and my trusty ZCR cream it's going down already. Talked to my enterostomy nurse as well and she recommended keeping the tube more secured, too much movement facilitates granulation.

I am completely pain free, and have been able to use my scooter again for commuting. M and I also went to the gym last Sunday for the very first time in two months (took time off due to being physically very active during our move). Had no problems there either, I was even able to do abdominal exercises.

Work is very exciting at the moment. My boss organized that I can work on our surgery wards with the psychologists there for four weeks. I have already completed two weeks - it's very interesting, I am getting lot's of experience, but it's really strenous as well. So many so very sick patients.... and quite often with a very dire prognosis.

And the most exciting thing of this week - my best friend gave birth to her third child - a baby girl on Friday. Little Lina was in quite a hurry - she was born in the ambulance :-). I got to visit my friend at the hospital Friday afternoon and take a peek at Lina. What a beautiful little baby-girl!

Saturday, September 3, 2011

I am definitely feeling better painwise, but I realized in the past few days that healing is not just about physical pain. The past few weeks have been extremely stressful for me. I had a tube that was constantly on the verge of clogging up, while at the same time knowing that I could not call Dr. H. for a tube re-placement and could not get in any earlier than the 25th of August with Prof. P. On top of that I knew that there was a real chance that the PEJ tube would not work out again, something that I tried not even putting one thought into it. Having a PEJ tube means so much to me. This tube can last up to 5 years (or longer), it won't clog up if I care for it well, and it can't move back up into my stomach. I can travel without worrying what to do if my tube happened to get clogged in some foreign country. I can get pregnant without having to worry about possibly needing anesthesia for a tube change in early pregnancy.

I want to blog more about my tube placement last Thursday because I want to be able to look back at this post in a few years and remember how relieved I felt afterwards.

So I arrived bright and early at the hospital last Thursday, I had just sat down to wait for the admitting doctor when my dietician walked onto the ward to talk to my admitting doctor. I hadn't seen her since April, and she was very excited to see how well I looked. Now that I am finally absorbing my protein (at least most of the time), I am not retaining water anymore, and I really do look different - healthier :-). We both thought that I would probably have to wait quite some time (I had no specific time for my surgery, just the date and that I was going to get called down when they were ready for me), so we said that she was going to come by later to do a body impedance analysis on me. But I got already called down at 9.30. Up until that time I had no idea if this GI doc was really willing to try out another PEJ-tube with me. I had never met him before, but my dietician had written him an email two weeks prior telling him about me, also informing him that Dr. H. (who used to work for him before he left the hospital to become chief of gastroenterolgy at a different hospital) had tried unsuccessfully putting a direct j-tube in last December. I was very, very nervous when I was wheeled down to interventional endoscopy. At first one of the other docs on duty came up to me and said "so we are going to place a J-line through your G-tube today", I immediately freaked, but then one of the nurses walked by and said "oh no, we are doing a direct PEJ-tube because Dr. H. couldn't place it" - she said that with a real smirk on her face. That's when I knew that my dietician's strategy was going to pay off, Prof. P simply had to try putting in that j-tube and succeed in something that Dr. H. was not able to do.
Prof. P. came by too and talked to me briefly, I told him how important the direct J-tube is to me - how I am a newlywed (well not as new anymore :-)), wanting to be more independent, wanting to have a tube that would not clog up that easily. He definitely agreed on that :-).

I voiced my concerns again in regards to sedation with his assisting doctor, who very kindly told me "people always sleep well with a surgeon around". I was very surprised and asked him what a surgeon did in GI endoscopy - he told me that he during his residency he has to do a year of  training in a different specialty. He told me he was always responsible for anesthesia down here and he would take really good care of me. For some reason hearing that he was actually a surgical resident made me feel more relaxed. He then kept reassuring me that Prof. P. was the best down here and that's the last thing I remember before I fell asleep. When I woke up I felt pain, and I knew it must have worked, being still quite whoozy from the anesthetics I kept asking "did it work"? The very kind surgeon was still at my side and he just said "of course it did". I started to feel really nauseated and in lots of pain, so they hooked me up to some pain meds and zofran, and I remember I told the surgeon to please thank Prof. P. for me.

I can't quite recollect being taken back up, but I remember lying in my room whimpering and being in pain, getting another IV with pain meds and then it started to kick in. It had really worked!!!! All my fears and worries - gone! I sent off text messages to M an my family. And then my dietician walked in and she did the cutest "happy dance" when she saw that I was the proud owner of a brandnew j-tube :-). She told me the next day how she is a very spiritual person and that she prays every morning, on that morning she had prayed for me - really, really touched me to hear that :-).


Oh the irony!

I am feeling (slightly) frustrated with my feeding pumps right now. M picked up two newly serviced pumps for me on Friday. One is so noisy that there is so no way I can wear it at work, all my patients would pick up on it, something I want to avoid. And the other one, well, what can I say, its battery died on me today too :-(!!!! At least I was at home when it happened. What makes it really hard for me is that I can't do anything about it on the weekend. And I will have to bring a second pump to work on Monday, since neither of the two pumps I have will last the entire 12 hours that I am out of the house..... can't wait for Monday to work out a good solution. Praying that Mrs. P. (who is my contact person for replacement pumps) will also understand that I need a replacement for the very noisy pump too....

Other than that I had a wonderful day with M. Got up early (as always), went to Ikea and got some deco for the apartment, ordered curtains at Betten Reiter (and almost fainted when I found out how much those curtains were going to cost us...), and got some special high-cal food for Laura (my old kitty who is starting to look very skinny again). I also wanted to do some cleaning, but my tube has started to hurt (first day off pain meds). Got sent to bed by my darling husband :-) to rest instead.

Friday, September 2, 2011

It's been a week and a day since my surgery, and I am very pleased with my progress. I have minimal pain when walking, starting to lose that "pregnant belly look", and am definitely feeling more like myself again.
I had some problems in the beginning with leakage, talked to my stoma nurse, and she advised me to start using ZCR-cream (a barrier cream) around the stoma right away to prevent irritations to the skin from the leakage. She also told me to start with Medihoney Antibacterial Honey and carefully dab it into the stoma tract using a Q-tip. It's been 48 hours with the Medihoney, and my stoma tract and stoma site is looking so much better, the leakage has significantly decreased and the stoma tract is tightening up. I have always been a big fan of Medihoney, but I did not expect to see changes that soon. It also makes me feel good because I know it will keep my stoma infection free - especially since I am working around so many nasty bugs and germs as long as it is still healing and bleeding every once in a while.

Had a bit of a pump drama last night. For some odd reason the motor of my pump started to misbehave last night when I wanted to hook back up after having my shower. The pump was really noisy, and you could hear that something was not right. Well, I thought, no problem, that's why I have a spare pump at home - fully charged and ready to go. This morning I felt ready to go back to work, was actually really looking forward to it. Arrived at the hospital bright and early at 7.30, chatted with my boss and our psychology student intern, did some reading and was ready to get my first patient when my pump started alarming at 9.45. But it wasn't its usual "there is a kink in the line somewhere" alarm, no it was the dreaded "low battery" alarm instead. I could not believe it! Usually a full charge gets me through more than 24 hours. I don't do well off my pump, and I knew that I definitely could not work until 4, then commute back home and go therefore go without my feedings until 6. My boss was very kind about it and told me to go home, thankfully it was a really slow day.

By 12.30 I was hooked up again, re-charging my pump, and because I had to stay connected to power for at least an hour I had the perfect excuse to have a nice early afternoon nap with the kitties :-).

M already got me two new replacement pumps. This time around though I will try out both pumps and see how long a full charge lasts me. Don't want to have a repeat of today again :-).


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 :-)!

Sunday, July 24, 2011

These are the moments

M and I worked really hard all day to get our old apartment ready - our lease ends with July 31st. In the afternoon we treated ourselves to a few hours of leisure and spent some time with my best friend and her children. When we came back home, I wanted to unpack some more boxes at the new place. But before, I needed to fold some laundry and move the wet clothes into the dryer. When I walked into my bathroom, I decided instead to switch my washer's door from opening to the left to opening to the right - that way it would be more comfortable.

I was so sure that my washer had this feature, so sure in fact that I did not read the manual first. Well, I should have. I was able to take the door off with no problem, but when I opened the plastic cover on the other side, a connecting piece inside the washer slid away. Realizing my mistake, I tried to put the plastic cover back on, could not fetch the connecting piece through the small hole, now the door can't lock in place anymore. AARGH!!!!

Have to call customer service tomorrow, spend money on something totally unnecessary. Obviously, I had a lesson to learn. But I am still having a hard time not being very, very mad at myself.

Thursday, July 21, 2011

Finally!!!

Finally some time to write!!! We are loving our new apartment, and I have been meaning to blog about it and put up some pics, but there is not enough hours in the day to do all the things that I need (and want) to do right now!

Even though I usually don't want to think about it or see myself this way, but fact is that I have a chronic illness (actually a few), and fact is also that I therefore need more sleep than most young women my age. With moving and commuting to work I have been sleeping way too little and that has been taking a toll on me. All of last week we had no curtains in our new bedroom - no way to darken it at all, that's not contributing to a good nights sleep either. Thankgod to my lovely stepdad we now have blinds!!!! And it's dark again in our bedroom. And I have managed to go to bed early for three days in a row! The world certainly looks better when you have had enough (or at least more) sleep. I can't wait for the weekend to finally come - planning on sleeping in and maybe napping with a cat or two or three :-). Two weekends ago we moved, last weekend I had my clinical psychology classes - I am well overdue for some relaxation!

The cats are loving the new place as well, even though the two young ones are still a bit scared when it comes to being on the balcony. Laura on the other hand seems to remember all the years of her life (8) when she still had access to a balcony and loved and enjoyed it from the very first day on. Ever since we found out las March that we will move into an apartment with balcony this year, I have been hoping and wishing that she will hold on until then. And she did. My sweet old feline lady now gets to enjoy sun and wind and fresh air again! And she does - watching her lying on the balcony with the wind gently blowing through her fur, makes me happy!

Wednesday, July 6, 2011

Sneak preview

We have been really, really busy with getting ready for Saturday = moving day! M has been painting some walls to bring colour into our life, assembling our new Ikea furniture, and I have been packing up the old apartment.

And the cats, well the cats seem to be quite happy with the fact that there are lots and lots of full and empty boxes around the house for them to hide in, jump onto, sleep on etc....

Here a sneak preview of our new living room....

Monday, June 27, 2011

So much to do, so little time

That's the story of my life right now... Still, I am way overdue for posting an update. Tube feeding at my cousin's confirmation ended up not being a problem at all. My Stepdad ordered food that I could eat too and shared with me, that way I actually got to eat orally like everyone else.

Last week I had a few really nice experiences like meeting my dietician's intern for a meeting with another newly tubefed patient and even though my dietician had briefed her that I had a feeding tube when she saw me stepping out of the elevator she thought that there must have been some sort of miscommunication going on and more likely I used to have a tube, but don't any longer, as she surely someone as I attractive as I am and as healthy looking can't be tubefed.

It's a bit hard for some people to imagine that tubefed people don't have to look like they are close to dying, on the opposite I look so well and healthy because of my feeding tube.

My dietician is very proud of my progress. I am finally able to build up muscle mass and my arms and shoulders are starting to look less skinny - yes :-)!!!! I have not felt this healthy in a decade I think...

The big news this week is that M and I are getting the keys to our new place this Wednesday! We have already sold quite a bit of our old furniture and our living room is basically furniture-less and instead lots of boxes piled on top of each other. After we get our keys, M and I will need to do some painting and then start assembling all the new furniture in time for the big move July 9th.

My internship is going well, am starting to get used to getting up very early and am really enjoying my time riding the train, especially in the morning with all the other commuters on board it is very quiet and relaxing.

Friday, June 17, 2011

Family functions and tube feeding

I am a self-confident tube feeder in public and in my social circle. But family functions are still a bit iffy for me. I can actually deal with it, it's more my immediate family that sometimes has a hard time with it. A few months ago I was supposed to go with my Mum and Stepdad to spend time with his parents and siblings. My Mum told me beforehand that she didn't want me to say anything about being tubefed (even though I would have worn my waist pack with feeding tube stuff).

Tomorrow is my cousin's confirmation, and I am her confirmation sponsor. I took the train home after work today. When I arrived at my parents' house, it happened to be time to re-fill my formula. My Mum looked at me and asked how I was going to do that tomorrow. At first I didn't know what she meant, turns out my cousin was deeply disturbed by the fact that I have a "hole" in my stomach and use a feeding tube when she spent a couple days with me in Vienna at the end of February this year. My Mum does not want me to top-up my formula bag in front of her and the rest of the family tomorrow. Don't get me wrong, my Mum supports my tube feeding, but I guess I have more experience with feeding in public and being self-confident and not caring about what other people think when they see me handling my tube.

Take today for example, got on the train this afternoon, sat down took out my formula and refilled my bag in front of all the other passengers in my part of the train. I simply don't care.

Thursday, June 16, 2011

Tired

I started my second internship June 1st - I love it, but it makes me incredibly tired. I totally underestimated what a toll commuting will take on me and my body. I leave the house at 6 AM and return by 6 PM. There is so much I want to do, like read my (work related) books on the train or when I get home, but after close to 9 hours of working I can't seem to muster up the energy to read a psych book. I am soooo tired. And I am not getting the amount of sleep I usually need. That's not helping either.....

On top of all of that M and I are moving soon, I have started to pack some boxes, and we have been selling our old furniture. It's kind of strange to sit in our living room / dining room now - no book shelves anymore and the dining room table is gone too :-).

I am too tired to even write.... eyelids simply not staying open.....

Saturday, May 21, 2011

All packed up

Everything is packed and ready to go, got one suitcase dedicated just to my tube feeding stuff (lots and lots of formula :-)).

I am so excited to be going on vacation tomorrow. I love being at the airport, seeing and experiencing the bustling activity, checking in, walking through the duty free area and getting on the plane for a new adventure.

I am looking forward to smelling the salty air, feeling the ocean breeze on my face, enjoying the sunny weather, spending lots and lots of quality time with M, sleeping in every day, seeing friends, and simply "be".

Friday, May 20, 2011

My last day

Today was my last day at work - I have finished my first 6-month internship!

Of course I am sad. I enjoyed working there, I got along with my colleagues really well, I was well integrated into the team. And my boss told me that he has never had an intern like me before... and I know he really meant it.

I am glad that M and I are off to Portugal Sunday morning for a vacation, gives me time to relax and have some sort of a break before starting my second internship June 1st.

This is me as a psychologist :-)

Friday, May 13, 2011

Who can top that?

This is it. I am sick again.

Yes. Don't ask me how I managed to do that, but this is my third cold in six weeks. Always three weeks apart on a Thursday I noticed the first cold symptoms that would eventually develop to a full-blown sinusitis over the next few days. Last time I had an ear infection as well.

I have only felt well for maybe two days in between, so this has been really draining me. The timing couldn't have been worse, as I am in class all day tomorrow and am set to leave for Berlin Sunday morning.

Went to see my family physician today, and she concluded that I needed some antibiotics after all if I can't get over it and keep getting re-infected. I am hoping for no side effects, especially since I will be travelling. And hopefully the antibiotic will kick in soon - preferably I wouldn't want to get worse - at the moment it is still tolerable with pain meds and cold meds on board.

Wednesday, May 11, 2011

Wanted to write an update tonight, having pump and tube problems, and needed to vent.

But it is 9 PM over here already, and I am still trying to get to bed earlier, so off I go.... - will update tomorrow!

Saturday, May 7, 2011

Learning how to manage my time

In order to be able to function I need at least 8 hours, better though 9 hours, sleep at night. With working 40h/week, being responsible for our household, working with my rehab patient after work once a week and all the other things that need to be tended to, I have been cutting back on my sleep. Fridays I only work until 2 PM and that's usually the hardest day for me with being very tired and day-dreaming of a good nap all morning. Once I am home I always end up sleeping for 2-3 hours on Friday afternoons trying to relieve my fatigue.

I sat down yesterday evening, making myself a plan on how to better manage my time, get more sleep in, be able to do things that are good for me (like working out or going for a run). It all comes down to spending less time on the internet.... - the computer and the internet are always "time thieves".

I have a nice weekend ahead of me, need to do some cleaning and grocery shopping, but will also treat myself to a new tube feeding waistpack. Tonight I will be going to a concert (latin jazz - one of my friends is playing) and tomorrow we have been invited to a picnic :-).

Tuesday, May 3, 2011

I am listening

I always try to spend enough time with my patients to get their history and a feeling for their situation when they get referred to me for neuropsych testing. It's not always that easy when we have lots of referrals from our two wards and maybe outpatients as well. But today we had a slow morning, and I was really able to take my time while talking to my patient, an 81-year-old man, admitted for dizzyness. He told me about his very difficult relationship with his ex-wife, and he kept asking me "Can I really tell you all of that?" And I kept saying "Yes, of course, that's what I am there for."
He seemed so relieved that I was really listening to him.
Being able to pay attention to his needs and give him what a needed - a good listener and objective opinion - made my day!

Monday, May 2, 2011

I could write an ode on runny noses

Actually, it almost makes me laugh. Just because that's so me :-).
I am finally getting over my last cold and then grass pollen season started in Vienna today. And my nose is running and dripping all over again. So picture me today - my white coat stuffed with clean and used tissues, constantly - even with patients - having to blow my nose or otherwise I would have - sorry for the graphics - dripped everywhere. Obviously, after five weeks of some relieve due to the depot steroid injection I received at the beginning of April, I am officially in a full-blown allergy flare-up again. Time to bring out the nasal steroid spray again and stuff all my pockets and bags with tissues.

Only three more weeks and we will be off to Portugal - a week at the ocean will be wonderful for my allergies and my nose!

Sunday, May 1, 2011

On the mend

I am finally starting to feel a bit better. That really was one heck of a cold/sinusitis/bronchitis... My husband has been really good this year with not catching the bugs I brought home, but this was one he could not escape. So now he is sniffing and coughing and cuddling up with the cats on the couch, while I am well enough again to run the household. Did lots of cleaning and tidying up yesterday morning and finished off the evening with some ironing (not one of my favourite activities).

I still get sweaty and flushed really easily which means that my autonomic nervous system is still in overdrive, but at least I can walk again without getting out of breath.

I will be getting my blood levels (including a vitamin status) checked in a couple of weeks, and then I will most likely have to start with a multivitamin. I am getting all the necessary vitamins through my formula, but because my tube is positioned deeply in the jejunum I might not be able absorb them as well. On top of it I tend to absorb vitamins badly anyway, even when taken orally.

With being so sick with sinus stuff my appetite for "real food" was non-existant in the past few days. I usually munch on a couple crackers during the day, but my stomach always felt full from lots of post-nasal drip...


I am looking forward to a new week. Hopefully by the end of it I will be well enough to go running and work out again. M and I joined a gym a few weeks ago to add some muscle mass to my very skinny arms, but with being sick all the time, I have not been able to get into a routine yet.

Tuesday, April 26, 2011

I am not invincible

Being sick again felt so much of an inconvenience too me, not wanting to stay home from work, not wanting to have anyone think that I am any less capable of being a full-time psychologist than any other regular non tube feeding girl.

I spent hours negotiating with myself, M, and my parents, whether I should go to work today (Easter monday is a public holiday over here, so no work duties yesterday). I had a horrible night, coughing, sniffing, tossing and turning, and yet I got up this morning determined to go to work.

I made it for four hours before deciding that I would be better off at home :-).

Yes, I know, I am not invincible. I should have stayed home in the first place, it's just so difficult for me having had so many sick days this year already :-(.

Off to see my family physician now.

Saturday, April 23, 2011

Sick. Again.

I don't know what's going on with my immune system. In the past six weeks I have had a flu, a cold that turned into sinusitis, and now, only three weeks after the start of my last cold, a cold again that is most likely on the fast track to actually being sinusitis again.

Inbetween having "real" colds, I was having really bad pollen allergies, no wonder my sinuses are in bad shape. I am home at my parents with M and I was looking forward to a wonderful, relaxing easter weekend. Instead I have been asleep most of the day and everyone keeps commenting on how pale I am, no wonder - I feel like sh.....

Monday, April 18, 2011

I got it!!!

At the beginning of March I posted about my very first job interview as a full time tube feeder, as I still need another 6 month internship for my neuropsychology degree.

I knew that they wanted me, but I still had to jump through a few bureaucratic hoops before I could relax knowing that that position was going to be mine.

All last week I have been waiting to receive THE letter from the nether austrian government giving me the permission for my internship. Oh the anxiety of checking my mailbox every day and the disappointment afterwards....

But today the called me, and I got it!!!!
I will begin June 1st. This means that I will work at my current hospital until May 20iest, then I will be off to Portugal for a week with M, and then I'll start working at the new hospital in P.
I am so glad. You have no idea what this means to me. It means not being without a salary (albeit small) until September (when I originally I would have been able to start with a second internship), I will be insured, I will have my degree completed earlier, and I will be able to start a family sooner!!!

In other news, I fell while riding my scooter today. Actually, I fell when I was not even really riding yet.... It happened in the middle of the sidewalk of a very busy touristy street, lots of people just gawking at me, only one girl came to help me up and ask me if I was all right.
My hand really hurt in the beginning, and I am sure I will get a nasty bruise on my hip, but at least I didn't break anything.

Tuesday, April 5, 2011

What made me smile today

I have been treating Mr. A for the past five weeks for his severe memory impairments and visual field defect. His semantic memory is impaired, making it difficult for him to retrieve old memories, although this is slowly coming back, but he also has a hard time making new memories or re-learning things that he used to be able to do. He is high functioning in his deficits and he definitely is able to form new memories, but still he is impaired.

He can't read anymore and so he sits around most of the day and just wait for his therapies, rounds, meals, visits ... for the day to be over. Seeing his face lighten up when I pick him for therapy is priceless.

Today, he pondered about what day of the week it was (temporal relations are not easy for him to grasp), and I told him it was Tuesday. He then started thinking that if today was Tuesday and tomorrow was Wednesday and he was going to go home this Thursday, this would mean that I would only get him for rehab one more time. On our way out the door he started shaking my hand and thanking me and telling me that he would remember me for a very long time.

This coming from a patient with severe memory impairments made my day!

Monday, April 4, 2011

My PEG/J and my very good looking stoma

M took some photos of my PEG/J yesterday, and I have realized that have not yet posted pics of my new tube. Even though I was so disappointed when I had to give up my low-profile button tube for the PEG/J, I am now actually really liking it.
My tube is a Fresenius Kabi 15 FR PEG with a 9 FR intestinal tube threaded down the PEG into my jejunum. This set-up is also called a JET-PEG. Yes, I admit, the adapter for both the G- and the J-part is humongous, but I got used to that too.

I have always had pretty bad leakage with my G-button, partially from feeding into my stomach (the pressure always goes the path of least resistance, in my case out through the stoma...) and also from the balloon style tube that simply doesn't seal off the stoma as well as my current PEG that has a bumper on the inside. I had a few issues after switching to the new tube, as my stoma first had to tighten around the tube (always used to have an 18 FR), but with the help of my beloved medihoney that went quite well. Then I kept having really dry skin around my stoma site, until I realized that my stoma was now so "dry" (as in not leaking anymore) that I no longer needed the zinc barrier cream I had been using for over a year. Now all I put on is a bit of St. John's wart oil (good for my excema, and I tend to get excema round my stoma if I am not careful) and some Eucerin creme for atopic dermatitis (excema) on the skin around my stoma that tends to get really dry.

Here are a few photos:

 I know the color is kind of off, hard to believe
that that tube used to be clear in the beginning

 Stoma up close.



My tube, waistpack, and I :-)

Sunday, April 3, 2011

Sick and tired

I really ended up getting a bad cold. So instead of making our way through multiple furniture stores in preparation of our big move in July, I spent most of the weekend in bed, cuddled up with the cats.

As it happens I had also developped tendonitis in my left foot from scootering too much (oh, I know, I like to overdo things...), at least now with being sick I don't feel as disappointed that I have been banned from scootering and running for a week.

I have no idea what's up with my immune system. In the past three months I had two UTIs, 1 flu and now a cold.... I guess working at a hospital doesn't make it any easier - so many germs there.

Due to the perfect timing of my cold I have no idea if the steroid injection is working or not. I received the injection Tuesday evening, supposedly plasma levels are reached within 24-48 hours. Thursday night I was still in full blown allergies and Friday I came down with the regular cold. Plus, I have not been outside at all since Friday....
Still keeping my fingers crossed that I will see major improvement.

Thursday, March 31, 2011

Allergies!

I am highly allergic to most pollen starting with hazel depending on the weather in January or February and ending with ragweed in October.

This year, due to a very long winter, I have had no problems until March. But then it started and my allergies reared their ugly head. I have never had that many problems with my eyes being affected, but for some reason this year my eyes have decided to join the fun. Starting March 8th my eyes turned into a teary, swollen, red mess (while being on oral antihistamines). I then started my antihistamine nasal spray and eye drops, but my eyes got worse. People at work were starting to comment and was feeling more and more uncomfortable. Went to see my family physician again, got steroid eye drops - worked like a charm. Stopped the eye drops (aren't supposed to be taken too long). Eyes were moderatly red for five days and than bang the next flare-up. Went to see my allergy doc on Monday, he prescribed oral steroids (5mg for one day, 2.5 mg for the next) - this was supposed to get me out of the flare and keep me flare-free for at least two weeks, then I might have to take another two-day-course. I tried explaining to him that I don't absorb oral meds very well, but he didn't really listen.
Of course it didn't get me out of the flare and my eyes became even worse. Of course I have symptoms with my nose too, but after adding my steroid nasal spray at least those very manageable. (Although I lot worse than last year.)
So, went to see my family physician again (it's very difficult to get into my allergy doc's at short notice).
She recommend a steroid depot injection. I know that my allergy doc is very opposed to those, but I have been feeling so bad in the past few weeks that I agreed to take it, even though I hate to take steroids - especially due to the potential side effects. Got 40 mg of triamcolone, and of course, once I was home my head was running hay wire with thoughts about all the side effects - especially the possibility of water retention - I was so happy to finally have lost all my water weight from protein malabsorption.
I know it probably was the right decision, I couldn't have continued like this, but still I kind of regret that I agreed.

My eyes are feeling a lot better, but I am still reacting (even though I am still on all my other allergy meds). Went for a walk with a friend and her dog today, she was amazed how much my allergies were acting up (even to the point of not being able to stop scratching due to being sooo itchy all over).

I am now off to the bath tub, trying to get rid of some of the pollen and maybe reduce the itchyness.

Oh and yes, I woke up with a sore throat this morning and since everyone around me has been sick in the past two weeks, it is totally possible that I am getting a cold on top of my allergies.

Lovely. Thank god I just bought a family size pack of tissues.

Saturday, March 26, 2011

I am a repeat offender

Ever since I have been put on fulltime j-tube-feeding and stopped almost all my oral foods, I have had significantly less nausea and other GP symptoms.

But every once in a while, I feel like I need to test my limits wanting to find out if maybe miraculously I can tolerate some foods again. After stopping all veggies (blended) after last weekend's round of nausea, I simply had to give it another go again. I had some baby jars at home (blended carrots with fennel) and even though I had promised M to only have a max. of 50g in go, I of course had almost half the jar. The problem is that when I am eating something, I really want to have it, and I don't feel sick while eating. That's why I tend to eat way more than I should. The problem always comes afterwards when I am supposed to digest whatever I just ate.

Felt sick and nauseated all afternoon, actually it's is now 8 PM, and I am still burping carrot :-(. Got really thirsty too, but couldn't drink due to being so full.

In the end I even had to skip my "dinner" - roibush tea with milk foam and cinnamon sugar. At least water is going down again.

So, yes I am a repeat offender.

Tuesday, March 22, 2011

"Graduating" another rehab patient

We only offer early rehab at my hospital, getting the patients ready to either go straight home or leave for more treatment at a rehab facility.

Yesterday one of my rehab patients that I have trained with daily for the past four weeks left for an inpatient stay at a more specialized rehab facility.

Last week I repeated all the neuropsych testing I had done for evaluation before starting neurorehab with him. My patients progress, even though often visible in our daily training sessions, is not always measurable in our neuropsych tests. You should have seen my delight when I looked at Mr. K's test results from last week. He has shown a real improvement in all training areas!!!

I met with Mr. K and his wife on Friday to discuss results and to "wrap" things up :-). It really touched me to see and hear :-) their gratefulness.

I really hope he continues to make such great strides forward in recovering from his massive stroke!

Friday, March 18, 2011

2500 kcal!!!

I am a high calorie girl, malabsorption of course doesn't help the issue.
And even though I am underweight and have low muscle mass, I need a good amount of calories to maintain and even more to gain weight.

When I started j-tube feeding I was having about 1000 kcal a day because I could only tolerate a low rate without refluxing the formula back into my stomach.

One of my mottos for the past two years (that M keeps having me repeat over and over, so I won't forget it) has been: patience and consistency. So with patience and consistency I have been able to bring my feeding rate up to 115 ml/h during the day and 100 ml/h during the night. This is my second day that I have been doing the 115 ml/h and so far it is working well. I have tried 115 a couple times last weekend and always had to turn it back down due to some bowel problems, but I hope it will keep working this time around.

2500 kcal has been my big goal for quite some time, I still might need more to gain weight, but for now I am happy that I have reached that, and I will be able to stay there for a bit before having to advance my rate again.

M promised me a new pair of shoes as a reward :-). (I very much believe in rewarding oneself for reaching goals and so does he :-)).

Thursday, March 17, 2011

Mirror neurons

Today I saw a patient who had been admitted to the hospital with a stroke a couple of days ago. I was told that this patient is severely depressed, but denying it.

It didn't take me long to find out the reason for all of that. Her teenage daughter had been diagnosed with thyroid cancer last April and required surgery to remove her thyroid. Now she has some suspicious lymph nodes. The whole family is very affected by the situation, and obviously all of this is a very distressing situation for my patient.

When she started talking about her daughter's diagnosis, she began crying. At first I was sitting opposite of her, but then asked her if I could sit down beside her. So I sat down next to her, gently patting her shoulder. By then my emotions got the better of me, and I had some tears in my eyes too. I am after all just human and hearing a story like this touches me too, even if I am the professional one here.

What do I do in a situation like this? I explaines to the patient that hearing her talk about her story touches me so much that I shed a couple tears too.

Scientifically speaking it all comes down to the mirror neurons in my brain. Seeing someone cry in a social context like this activitates certain mirror neurons and once they start firing, crying along is bound to happen. It's due to mirror neurons that humans can experience empathy.

Monday, March 14, 2011

I got an early (really, really) birthday present!

M got me a really early birthday present! Very early - as my birthday is not until July :-).
He had the brilliant idea that my life as a commuter would be a lot easier if I had a scooter to get to and from the subway and the train station. We went to look at a few scooters last Friday and Saturday and I did a bit of research and I selected this one:

It's the lightest of the Micro scooters making it perfect for commuting! So today M and I went back to the store to try it out one more time and then he bought it for me then and there even though my birthday is not until the end of July!

Friday, March 11, 2011

How do you tell someone they are going to die?

This morning at shift change we were presented with the MRI of a 40 year old man, who came to the neurology outpatient clinic, as his wife had been noticing some personality changes in the past few weeks.

The MRI showed multiple (five) metastases in his brain with his primary tumour being a lung cancer. After shift change her admitting doctor talked to my boss and I, telling us that he didn't think that the patient understood the severity of her situation, subsequently asking us to talk with him about his diagnosis.

This patient has a maximum of 6 to 12 months to live.

How do you tell someone they are going to die?

I don't have a lot of experience, actually I have none. So I mostly listened to my boss talking to her. All of that really touched me today.
Life is so precious.

Wednesday, March 9, 2011

Wanted :-)

They want me!!!
I had a wonderful job interview this morning. All my worries about my feeding tube and waistpack were unfounded.

I selected my smallest waistpack and wore a scarf, so as to not draw attention to the fact that I was sitting down with a waistpack on. We then talked about all the job related stuff and when it was determined that I was the person they were looking for for the internship, I told the neuropsychologist I was talking with that I did want to mention one more thing about me. I explained everything and showed her my waistpack, and also let her know that I have been working with this set-up with patients at my current workplace without any problems. I also mentioned that I do think that this makes me a better psychologist because I know first-hand how life-changing medical issues can be and how important good coping strategies are.

Now I just have to get through a few burreaucratic issues, please keep your fingers crossed that everything will work out!

Tuesday, March 8, 2011

Job interview tomorrow

I received a very unexpected call yesterday from the neuropsychologist at St. Pölten hospital. They have an opening for an internship starting with May for six months, paid (under-paid, but better than nothing), and I would be able to get my internship credited towards my clinical psych and neuropsych degree.

I had one internship lined up for the end of August, but that would not be enough for my neuropsych degree, and I would have four months inbetween without getting paid, but with the opportunity to continue my neuropsych internship at the hospital where I am now.

But of course financially it would be a lot better for me to be able to do the other internship in St. Pölten. Anyway, I have my interview tomorrow morning. And this is my first interview as a full time tubefeeder. I am a bit worried about how it will go, and also about how to broach the subject. I do want to tell them, as I will be coming hooked up (to my waistpack), and might look odd to them why I run around with a waistpack :-). I know I can tell the neuropsychologist that I have been working hooked up without any problems at my current hospital, but still...

I so want to get that internship!!! Please, anyone, if you have a few thoughts to spare, send over some good vibes :-).

Today on the way home from work, I was chatting on the phone with my friend while riding the train, telling her about tomorrow and about how this will relieve all my money worries at least for the foreseeable future. I then got off the phone and just chilled the last three train stations lost in thought. Suddenly, just before the stop where I had to get off too, the woman sitting across from me bent towards me, looked at me and said: "I wish you good luck for tomorrow." When I looked at her obviously speechless and I slightly confused, she said that she heard me talking on the phone about it and that she knew how all of that felt. It was so nice of her! It totally made my day!

Monday, March 7, 2011

Lighting a candle


Tonight, I have three candles burning on my window sill to represent my dear friend Iris, her fiance David, and their little boy who she miscarried last night.

Sunday, March 6, 2011

Back to work

If I could, I would stay at home for another couple of days, cuddle up with my kitties, sleep and recouperate.
I still have a touch of bronchitis and what worries me a bit is that I have to walk uphill from the train station to the hospital in the cold morning air. Spring, has not decided to stop by yet in Vienna, and we still have sub-zero tempteratures in the morning :-(.

I guess I will have to wrap up really warm!

Thursday, March 3, 2011

I turned the flu corner :-)

This is the first day I have had no fever whatsoever, and I am definitely starting to feel better. I can deal with the awful cough and fatigue, but that fever really took it out of me. Glad though that I was able to tube feed through it, as fever raises your metabolic rate by 13% - and with my raging metabolism I would have for sure lost quite a few pounds as a result of this had I not been able to feed.

Now, I am trying to deal with the sheer boredom of still being confined to my bed - although I have decided that tomorrow I will move to the living room and the couch again during the day!

The cats have been wonderful, giving me lots of cuddles and love. M, of course, has been wonderful too, giving me no cuddles though for fear of infection :-). He helped me with a quick bath yesterday, washing me off with a wash cloth and soap - the pleasures a short bath can give you after four days of fevers!

Monday, February 28, 2011

Yep, it's the flu

My family physician has just been by - my lungs are clear, I seem to have the "real flu" combined with a beginning sinusitis.

The positive in all of this is that for the past 20 years my body never was strong enough to produce a fever - I have only had a fever twice all this time, usually remaining hypothermic. My family physician thinks it's a really good sign that my immune system and body are finally strong enough (and really getting nutrition) to produce a high fever. So no matter how awful I feel, I am actually happy that I am so healthy (kind of sounds funny with me actually being so sick right now).

She wanted to give me dihydrocodeine for my severe cough, but when I reminded her about its side effects on peristalsis, she decided it was better I stay away.

I am supposed to not treat the fever, but am allowed to take one dose of a strong antipyretic and analgesic at night before going to sleep. M is to get himself a flu mask for protection (he works from home), and I am supposed to stay in our bedroom as opposed to changing to the living room in the morning.

Anyway, my head is spinning - I am off!

Still sick

M made me change from the living room to our bedroom at 7 PM to try to get some sleep. However, I was hurting so much from the high fever that I tossed and turn for hours without being able to sleep. I know you are not supposed to lower your temperature, as it is your body's way of fighting off the viruses and bacteria. By 9 PM I could not take it any longer. I took the strongest analgetic and antipyretic I had at home - luckily it comes as liquid, as I absorb liquids better.

It really brought my fever and the achyness down, and I was finally able to fall asleep. Aaliyah, my youngest cat, slept almost the entire night right beside my head on my pillow case, purring occasionally...

I got up fever-free, feeling relatively well compared to yesterday, when the coughing started. Yesterday, all I had was a dry non-productive cough, today everytime I start coughing I start choking up... I decided that maybe I should see my family physician after all, at first thinking I would take the subway, as M can't drive me. A few coughing fits later I decided that there is no way I can't walk in the cold and take the subway.

I have a really hard time though asking my familiy physician for a home visit. Am I sick enough to justify her coming out to my apartment? Of course in the back of my head I have this nagging voice telling me that I am not sick enough, but I shut out that voice, decided to call her and leave a message with her assistant and let her decide if she needs to see me - now I have been waiting for a call back for almost 4 hours. It doesn't really help that today is her first day back after a week's vacation. In the meanwhile my temperature is up to 101.7 again.

I never ever get a fever that's why I think it's so important for me to be seen - the last time I had a fever was 8 years ago when I had sinusitis and needed to take antibiotics. I am a bit worried that I either have the real flu or something bacterial going on....

I slept with my upper body raised last night, still gastric juices and any water I tried to attempt to drink, kept coming up. I am still able to feed at my regular rate for now, which is good and will certainly keep me from losing weight due to the fever. I try to flush my tube every couple hours with 30 ml of water to get some more free liquids into me, as I am having a really hard time drinking orally.

Sunday, February 27, 2011

I've got the flu

I think I've got the "real" flu - high fever (up to 102.2 F so far) that came on suddenly, really, really bad, dry cough that hurts like hell, my bones and joints are very sore too, and no runny nose at all.

God, I am sick...
And I am glad for my tube, keeps me nourished and hydrated...

Saturday, February 26, 2011

Being spontaneous :-)

Thursday evening my Grandma called, telling me that she and my teenage cousin were planning a day-trip to Vienna to go to a few museums, asking if they could visit me. M already had a trip planned to Tyrol to visit his family, leaving on Friday. Therefore, since I love being spontaneous, I offered them to stay the night at our place and we'd have a girl's night.

They came by yesterday at 3 PM to store their overnight-bags in our apartment and then go downtown with me. That's when I suddenly had a brilliant idea - I checked to see if there were still tickets available for the musical "Dance of vampires" - one of my alltime favourite musicals - I have already seen it twice!
My Grandma loves going to the theater and musicles and so do my cousin and I. We managed to get really good seats, and for me it was the first time that I could use my handicapped ID to get a better price - 50 % off the regular ticket price!!! :-)

We three girls had so much fun, getting ready for the musical, dressing up and putting make-up on and off we went!

Thursday, February 24, 2011

Good news need to be passed on as well

Both my GI doc and my dietician have given me the permission to e-mail them whenever I need to, and my GI doc has even told me that I can text him anytime if something is up with my tube - even on weekends, if he is not at the hospital, he will tell a staff doctor what to do (he is the head of internal medicine). I am a firm believer that professionals who are that committed to their patients should not only be contacted in case of things going wrong or emergencies - no, good news need to be passed on as well.

That's why after going for my first run in six months on Sunday I sent an e-mail including the photo I posted here to my dietician and GI doc thanking them for fighting for me and helping me so much that I now feel good enough to go running again.

My dietician left me a message on my cell phone telling me that she wanted to personally (well over the phone rather than mail) thank me for the mail and the photo I sent. My GI doc mailed back later too thanking for passing on the good news, telling me that I am actually his first PEG/J patient that goes running, and enquiring if he could use the photo for lectures :-).

I love being able to give them good news after so many months of things not going so well.

Wednesday, February 23, 2011

Crossing the line?

As a psychologists we are supposed to be caring and empathic, but yet still remain distant. A formal hand shake at the beginning and at the end of a session or psych testing - that's it.

Today, I had a 34 year old woman starting to cry just at the beginning of my testing as she had just gone through a stressful situation on her way to the hospital. When someone is having a hard time and starts crying I simply can't be the psychologist who "just" sits there and listens and talks. That's not me!

I move my chair closer to the patients', so that I am not sitting on the opposite side any longer, but closer to her, and I usually put a comforting hand on the shoulder of my patient.

Technically this means I am crossing lines, but for it me it means doing what a psychologist is supposed to do in a situation like this - giving comfort!

Tuesday, February 22, 2011

Skinnier than you?

Today, I chatted with the psychology student who is currently shadowing me, and we talked about my sister in law, who is celebrating her 20iest birthday today and who I was just about to call and wish a happy birthday. I told her that I think that M's sister is a bit too skinny in my opinion.

My student looked at me and asked "even skinnier than you?"

Gulp. I had totally overlooked the fact that that's what people can actually say about me now - that I am a bit on the too skinny side...  Since I am not actively trying to be that skinny - on the opposite doing my best and raising my feeding volume and rate continuously to get back to my more feminine self, I have totally forgotten that that's what other people see when they look at me right now :-(.

I know - patience and consistency - if I am patient and consistent when it comes to raising my tube feeding rate, I will gain weight and I will look more feminine again!

Sunday, February 20, 2011

Back to running

Six months ago I stopped running, knowing very well that as long as I am not able to eat/feed an adequate amount of calories I can't lose calories through exercise. Not that I would have had the energy to go running anyway.

Last summer, I had already decided that I wanted to run the "DM Women's run" this year - DM is the equivalent of "London drugs" here in Austria. Every year they host a 5K and 10K run. I originally wanted to train with my girlfriend Iris, but she decided to bail out on me and get pregnant :-).

Went and checked out their website yesterday - this year's run is on May 22nd. They have free weekly training groups with a certified instructor all over Vienna starting March 2nd, and I have decided to join one. I am so excited!!!!

Today, I went for my very first run in 6 months and even though I walked more than I actually ran and it was freezing outside (just above 0° C), I really enjoyed myself!

My Nike backpack fits my bag and pump perfectly...

Thursday, February 17, 2011

On my way to becoming a neuropsychologist

I had some really good news today at work! I am currently (until end of April) interning for my clinical psychology postgrad degree (which I have to get first, before doing my neuropsych degree), but because I am working in a type A department (type A = certified neuropsychologist as my supervisor), I will be able to get this internship credited towards my neuropsych degree as well. Unfortunately I can only do a max. of 6 months at my current workplace (as an offical clinical psych intern) due to legal regulations. In order to complete my internship for my clinical psychology degree I need to work another 3 months full-time in a different hospital. Well, I have already lined up a second internship beginning at the end of August and because this is a type A department as well I can get those three months credited towards my neuropsych degree too.
By the end of the year I would be done with my clinical psych internship but I would still be missing three months for the neuropsych degree (and of course I still need the required classes).
Today my boss told me that he had finally talked to Human Ressources, and I can stay on until the beginning of August as a neuropsych intern. The only downside is that I won't get anything paid, but I am only earning 340 Euros a month there anyway, so it's not going to be that much different.

I am so excited!!!!

Wednesday, February 16, 2011

Darn that intestinal dysmotility

I keep forgetting that I have intestinal dysmotility issues as well, with some reverse peristalsis going on. Or more likely I am still in denial about it. I have been having some intestinal reflux all the time, but yesterday was especially bad, and I was refluxing my formula up into my stomach again. Of course I freaked and thought for sure that my tube was back in my stomach, especially after I just had my little tube drama last Friday and knowing that it was about 15 cm shorter now.

I was on the verge of e-mailing my GI doc to ask for an X-ray for a placement check. And then it sunk in again that this is my new normal. There will be days when my intestines will be pushing my formula back up. And it fits, as I had a GP flare the night before (too much milk foam on my evening tea) with subsequent nausea all through the night and the rest of the day.

In UTI news - I have not heard back from my doc in regards to the urin culture, so either no bacteria could be cultured anymore after two days on antibiotics or the cipro is sensitive to the bacteria that could be found. Today, I took my last pill of a five-day high-dose course, but to be honest I am still not completely symptom-free. I guess I should pay my doc another visit before she is on vacation next week.

Saturday, February 12, 2011

Tube drama

Besides the fact that I had a planned to pay a visit to my family physician for my UTI, the Y connector on my tube broke in the middle of the night.

Imagine my surprise waking up to this:

 Yup. That's my j-tube not being connected to the PEG anymore.

M and I taped it, so I wouldn't pull it out even further and we had to wrap it up in plastic bags, as it was leaking everywhere, and I still had to go to work before getting it fixed.

I sent my GI doc an e-mail at 6.24 AM asking if I could swing by for a quick repair, I got a reply by 6.36 :-) - so grateful for this new GI doc and his commitment to my care.

Got it fixed in the early afternoon, and he also shortened the PEG - now my dangly tube is not as long anymore :-).

In the late afternoon M and I went shopping downtown. After just finding out I had to take antibiotics again, I decided I needed to treat myself to something nice. M bought me another waistbag that I can use for tube feeding (I am owning quite the collection already. Since I am tubefeeding all day it's nice to have a choice what waistbag to "wear" :-). And I treated myself to a MAC mascara (very, very black - really suits me).