Wednesday, September 29, 2010

Why is your tube in your stomach?

Saw my ob-gyn today for my womanly check-up and to tell her about what has been going on, so she can be prepared for when the time finally comes to talk about starting a family (sometime next fall).

We talked a bit, and I gave her my GI doc's last letter that pretty much sums up everything to read while I got undressed. Then she walked into the examination room, looked at me (and my feeding tube) and asked: "Where does your feeding tube go?"
Now she had no idea that this has been the hot topic of the week/months.
"To my stomach.", I said.
"If you have gastroparesis, why does your feeding tube go to your stomach and not into your jejunum?"
"Well," I said "that's what I am asking myself too."

Turns out that she is very worried with the current set-up and our pregnancy plans. She says that with my high energy needs she does not want me to go into a pregnancy without knowing if I will be able to feed myself enough through my stomach. She definitely favors a gj-tube, so we always have the possibility to feed into my jejunum.

I am with her, of course, I have such a hard time meeting my energy needs at the moment :-(, I have no idea how I'll do once I am pregnant.

She does want to talk to my GI doc in the spring time (well before we will start getting pregnant), so everything is all worked out and really ready to go for that adventure.

Why is my GI doc being so stubborn about it?

Tuesday, September 28, 2010

How to make your wife happy

With all the usual GI mess going on, I have not gotten around to share a really cute "M"-story:

Last Wednesday I had gone to bed really late (at around 1 AM), as I spent the evening researching on j-button-solutions available in Austria.

When I finally went to bed, M was deep asleep. Just after I had switched off my night light, M started talking in his sleep.

"Yes, yes, she is my wife."

And then he paused for a second.

"Julia ......" and he proceeded to say my name with my new (his) last name....

It was sooo cute and sure made me feel good.

Monday, September 27, 2010


For some reason last week's events have hit me hard. Finding out that my GI doc does not think that a j-tube is such a good option, hit me really hard. At the same time it made me realize how bad things have gotten that we were really starting to consider a j-tube. I know that j-tube feeding comes with a whole set of problems itself, but do I really have less problems feeding through my g-tube?

I spent the weekend being really sad. What made me sad?
  • the thought of tubefeeding maybe for the rest of my life
  • the thought of maybe never being able to eat non-pureed chicken again
  • the thought of having to fight to maintain my weight
  • the thought that things might even get worse
I am usually a very positive and upbeat person, but I allowed myself to grieve this weekend. And to be honest I am still not done grieving.

Friday, September 24, 2010

Using scissors to cut mats out of your cat's fur - not a good idea :-(

I have to admit.

I did it again.

I am a repeat offender.

Three and a half years ago our cat Aimee had "kitty crap" stuck to her butt hair (oh the joys of long-haired cats) and in my attempt to cut away the soiled and dried in fur I managed to cut away a tiny piece of skin just above her anus. Unfortunately this tiny piece of skin managed to open up to a one-euro-coin big hole. And of course little Aimee needed to be sedated and a couple stitches.

I was told to not ever use scissors on my cat again.

Well, as it happens, Aimee is my cat with a vet trauma (that's a story for a kitty blog post on some other day). And my cat who hates to be brushed (unless of course she can sit in the bath tub). And my cat whose fur is so frizzy that she gets mats easily.

And of course I have been using scissors on her.

And then it happened again. She had some really big mats on her hips and I honestly thought that I needed to take her to the vets for a clipping if I could not get the mats out myself. Just the thought of Aimee at the vets and her post-vet spitting and hissing that usually lasts a week, made me grab the scissors.

And yes I cut her again. Bad, bad catmother. To top it off, I didn't see it right away. No, I did not notice it until yesterday. Of course we took her to the vet immediately. Poor little Aimee had to be sedated, the edges of the wound had to be recut and now my little girl has five stitches!

She was groggy all night and hissing at me all day long. Although I did get a couple cheek bites and kisses after all.

This is my little girl sleeping off her sedation:

And here a close-up of my "work" - not for the faint of heart:

Tuesday, September 14, 2010

Re-vamping my blog

I have started to remodel my blog page. The picture on top of the page was taken years ago in Victoria (Canada - Vancouver island). It resembles peace and calm to me.

I am also going to start adding pages on tube stuff. I just finished my first page on stoma care - if you want to have a look.

I am really excited to add more pages, although I would have never thought that it would take soooo much time :-).

Thursday, September 9, 2010

Tuesday, September 7, 2010

More wedding stories

Someone commented on how I had written about it raining in the morning hours and then the sky seamed to even be a bit blue when we walked out of the church :-).

That's exactly how it was. It was still a bit overcast when the ceremony began. The ceremony was coming to an end when someone from the church had already opened the church doors, and the priest actually said Petrus had given us a very special wedding present, as the sun was now shining. And it really was! It still wasn't too warm though which actually made me really happy - now that you have seen my wedding dress you can imagine how very hot it was underneath all that fabric!

After a million hugs and congratulations and kisses from everyone we sent most of the guests through the park to the hotel to have an appetizer while we went to have group photos done with our families and some very special guests.... - and then of course we had some photos of just the two of us.

At about 6.15 PM we asked everyone into the restaurant of the hotel - very beautiful with big sliding glass doors overlooking the lovely, very wild park of the hotel. M and I held a speech and then the buffet was opened!

M and I had come up with most of the foods that were being served at the buffet, and I must say we did a very good job. I was able to eat some of the foods too, and it felt very nice to be able to eat at least some parts of what everone else was eating and to not stand out that much. My corsage was so tight though that I was not able to eat lots and started to have GP symptoms right away. Had to ask my Mum to loosen my corsage afterwards so I wouldn't feel as sick.

M and I deserted our table very soon and just walked around and talked with everyone and had a really good time. People were actually commenting on how relaxed I seemed. Not only did I seem that way, I really was relaxed! For some reason I didn't worry about any of my guests (if they had fun, felt comfortable, liked the food etc.) - no - all I wanted to have was a good time myself and that's what I did. I danced for hours - knowing that I could dance anyway I wanted because I was the bride :-).

There was this little girl - a three-year-old - who, as I was told later on, still believed in princesses, and she thought I was a princess and therefore came running up to me all the time, wanting to dance with me and wanted to be held.

The girl in the red dress is Emilie who believed I was a princess
and I am listening to her father telling me all about it.
The little girl in the white dress is Maria - she is my half sister.

Sunday, September 5, 2010

A recap of the past week - Saturday 28th of August - WEDDING DAY!

The big day!!!

I hardly slept from Friday until Saturday with all the excitement going on. When I got up to have breakfast I felt very disorganized, not knowing where to start with everything. Don't ask me how many lists I wrote trying not to forget everything I was going to need. Packed my suitcase for M to take to the hotel with him - we had planned to stay the night there after the reception. Washed my hair again and blow-dried it really curly. Sent M off with his best man - with my suitcase, the box for the church (with the wedding candle etc.), 72 (wedding) muffins (homemade), and a heart-shaped wedding cake I baked with ingredients I could eat too. Even though I wasn't hungry at all I made myself eat some cream of rice with a banana (my favorite GP-friendly meal) for lunch and forced it down, knowing that I would really need the energy.

In the morning hours it had still rained, and I was having a bit of a hard time trying not to worry about the weather. I called my Stepdad who was going to pick me up, if I had a giant umbrella for me. He said: "I don't have an umbrella, but I have something even better. I have ordered the rain to be switched off in the afternoon." :-) That made me laugh and actually relax about the weather.

At 1 PM the stylist came to do my make-up and put the veil into my hair and transform me into a bride! Afterwards Arish and Nora helped me get dressed - what an adventure with a crinoline and a corsage :-), while at the same time they tried to get ready as well. My Stepdad came at 3 PM, telling me that he had just been stuck in the worst traffic jam ever on the highway, and we had to drive through town, which would take us longer. We left immediately with Arish, Nora, and James driving behind us in my car. We had really heavy traffic through town as well, but we still managed to arrive in time. Actually, my Stepdad and I didn't drive to the church right away, as I wanted to wait for everyone to be seated, before I made my big entrance!

And then my brother called telling us that he was stuck in traffic too. Therefore, when the best man called me to tell me that everyone was seated, and my Stepdad could drive me to the church, I actually had to tell him that two people were still missing - my brother and his girlfriend!
M told me later that the suspense at the church was quite high - everyone thought that they were waiting for the bride to arrive, when in fact the bride was just around the corner waiting for her brother to finally get there.

The ceremony itself was simply magical. My Stepdad handed me over to my Dad, who in turn walked me down the aisle and handed me over to M. I already started to cry when I walked down the aisle - seeing all my friends and loved ones looking at me and silently cheering me on, made me very emotional and made me remember once again how far I have come and how much I have overcome to get to where I am now.

Pictures really do say more than words - so here is a link to an online photo album of our wedding ceremony on PICASA - I am sure you will be able to see the magic that we felt!

Just click on the album to open it - and then you can select slideshow in the left hand corner of the menu bar.


Saturday, September 4, 2010

A recap of the past week - Friday 27th of August

And then it was Friday.

Here in Austria we have to be legally married before being able to get married in church. Therefore, on Friday at 11 AM we had our appointment at the registrar's office for our civil service wedding.

On Friday it was only going to be our immediate families and our witnesses to the ceremony. I left at 8 AM to get my first manicure ever, sent Nora, James, and Arish off to the Schönbrunn Zoo, started to get ready at 9.45, was starting to blow dry my hair, when Mum, my Stepdad, my stepbrother, and his girlfriend arrived at our place to drop off my wedding dress for Saturday, have a few glasses of water and relax a bit. That kind of threw me off though :-) - I am not used to other people being around me, except M of course, when I am trying to get my make-up and hair done.

So I felt a bit disorganized, running around in my bathrobe, trying to get ready. But I did manage to get ready in time, did forget my bouquet at home though - thankfully M took it with him (he took the subway, while I got to ride with my Mum and Stepdad).

The civil wedding was very short, I did have a couple tears in my eyes, but not too bad :-). It only took 10 minutes, the registrar basically just asked us if I wanted to marry M, and if M wanted to marry me and then she pronounced us husband and wife - that was it. I was really happy afterwards that this was not my "real wedding" because it didn't feel like it at all. We also took our rings off again afterwards.

Here are a few impressions of the civil service wedding:

M's Mum making me laugh :-)

Signing the marriage certificate

M had to sign too :-)
Legally wed!

Both our families - minus my Dad :-)

Afterwards we all went for lunch to an Italian restaurant. I had some pasta that I fought with quite a bit. I guess my stomach didn't agree with all the excitement!

M and I took the subway home from the restaurant. It was so much fun to see the looks on people's faces, as we obviously were newly-weds!

That Friday night we had a very special dinner with some very special friends who are so dear to my heart and I got to wear my dress again and be a bride once more.

Friday, September 3, 2010

A recap of the past week - Thursday 26th of August

On Thursday we all had breakfast together and talked and laughed some more. Afterwards I was off to get my eye brows done for the wedding, then we did some grocery shopping, took Arish to get her nails done, had lunch together again (I have not had so many meals actually sitting at the dining room table in a long time). The more I watched James eating his food, the more I understood how important a feeding chair is when it comes to feeding a one-year-old.

In the afternoon I took the girls and little James downtown for some sightseeing.

Nora and I (had to hook up my feedings)

Had dinner together again - it seems all I write about is us eating :-) - and some really nice conversations with Nora. God, how much I missed being able to talk to her.

It felt so normal to me to have everyone over at our place and share so little space. I guess with them having been my careworkers and spend so much time with me doing day-to-day stuff like cooking, eating, cleaning,.... it really felt like old times.

A recap of the past week - Wednesday 25th of August

On Wednesday Arish, M, and I all had breakfast together and then set off for downtown to do some serious sightseeing. The weather was really lovely, and we walked for two hours in the morning, came back home for some lunch and walked for three more hours in the afternoon.
The only slightly stressful thing was that I had obviously had hurt my foot the Friday before during our private dance lesson (for the wedding), and the walking aggrevated it and in fact my foot was really swollen and very painful, and I started to get worried about being in pain for my wedding on Saturday.
Arish and I had some very good conversations and it felt as if no time had passed since the last time we had seen each other. 

Nora and James were supposed to arrive at 6.35 PM, and I got M to drive me to the airport. I arrived in time, but of course had to wait for them to get through security as well. It was planned that Nora, James, and I took the train and subway back to our place from the airport, as I had no car-seat for little James. Nora and I had never even talked about a car seat. We did talk about me being able to borrow a traveling crib and a feeding chair from our upstairs neighbour.

Anyway, long story short, here I was again at the airport, feeling a bit of a deja-vu with just having been there 22 hours earlier, with the same nervous excitement in my stomach and pounding of my heart :-). I was so excited to see Nora and James finally walk through security :-). And I couldn't believe my eyes when I realized she had brought her car seat all the way from Kingston. So here we were - with a suitcase, a backpack, a car-seat, a tired baby in a stroller - there was no way I wanted to make us go home on the train now, especially knowing that with the car we would be home so much quicker. So I called M - he had just arrived back home from the airport - and of course M being the amazing man that he is hopped into the car again and drove back to pick us up at the airport. Well, if you remember, we have a tiny car, a very tiny car actually and after we had put the stroller in the trunk, James plus car seat and the suitcase in the back, Nora in the passenger seat it was determined there was no way that both of us would fit in the car. And yes, my amazing husband, let me drive Nora and James back home and he took the train back!

It was so nice to have dinner with Nora, James, Arish, and M. And of course I ended up going to bed really late again - so much to chat about with Nora!

Thursday, September 2, 2010

A recap of the past week - Tuesday 24th of August

After spending my the past couple days all day in class (I finally started my clinical psychology course on Wednesday - first 16 hours of 170 hours done ...), I finally have time to blog about everything that has been going on.

So this is the past week in a recap:

Tuesday - 24th of August:
In the morning I went to the outpatient clinic at our university hospital to get my albumine, ferritin, and vitamin D levels checked. It was exactly a month after I had started the semi-elemental formula in an attempt to reverse my hypoalbuminemia  and I had already received all my prescribed iron infusions.
After I had my blood taken, I originally wanted to do some shopping and get myself a new backpack to make a new tube feeding backpack, as it had been decided that I should start daytime tube feedings too, and I hated my ugly big yellow tube feeding backpack. For some reason I felt really dizzy after I had my blood taken, something that usually doesn't happen to me, and so I called my brother who lives downtown Vienna if I could come by his place (he is studying for an exam right now) and have a little lie-down. So that's what I did, relaxed on his couch, had some green tea, and was up to do some shopping an hour later.
Tuesday was the day that Arish was going to fly in to Vienna, and I was really looking forward to keeping myself distracted by adapting my new feeding backpack all afternoon. I picked out a really fancy new backpack, and I think it looks really good. I sewed for four hours, and this is the result:

You can hardly see the tubing - can you detect it? :-)

At five PM my dietician called to tell me that she had had a peak at my blood tests and that she had a very special wedding present for me. My albumin levels had gone up and were in fact low normal now. This means that the semi-elemental tube feed is working really well for me and this is what I have to stick with from now on. My hands and feet are looking a lot better too - less edema :-) - came with the low albumin levels....
We talked about how this means that I had to stay on the semi-elemental tube feeding formula, and we also talked about how this means that I will have to start tube-feeding during the day, as I can't tolerate that much volume during the night and was also lacking energy during the day. We talked about my insecurities when it comes to tube-feeding in public. I mean I was used to doing it when I was on continuous tube feeds last year, but back then I had my NG-tube so it was really obvious for everyone anyways. We talked about how tube feeding for me is the most normal thing in the world and how I should just treat it as if it was the most normal thing in the world. 
So that's what I have been doing - every day since last Tuesday. Arish's plane was very late - in fact - it was two hours late and didn't arrive until 10 PM that night. I was so very excited to see her and was so happy when the time finally came for me to drive out to the airport. I took my fancy new tube feeding backpack with me and hooked up at the airport in front of EVERYONE!!! I didn't even go to the bathroom (was so afraid to miss Arish walking out through security). My biggest worry was that I wouldn't recognize her. I am really bad with faces and even though I had seen her pics on facebook and she hasn't really changed all that much, I was really worried. So there I was waiting for her with my heart pounding and a little breathless and of course I recognized her right away when she walked through that security gate!!!! I cannot put in words how happy I felt that very moment. M and I had made some dinner for her (as she was supposed to arrive way earlier), so I got her checked into her hotel and then took her back to our place for some dinner, a tea, and lots of chatting. I ended up giving her the wrong directions to her hotel for her walk back, felt very bad about that the next morning, but she found her way anyway :-). I didn't go to bed until 1 AM and had lots of wild dreams with Arish mixed in....