My story part 7 – 7/10 “please help me…”

08/26/2013

This post is also available in: Norwegian Bokmål

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Hey Ingrid – I had a nightmare last night that Elias was going to be a big brother…. Well turns out that wasn’t a nightmare. That was just a plain fact – and not enough that he was going to be a big brother, we were expecting twins! My god this was really scary. Snåsakall`n was completely right. He predicted the twins when I was 18-19 years old, many years before I became pregnant with them! Talk about feeling “undressed”, I didn’t doubt for a second that it was two girls when we were going to get the ultrasound. I told the story to the doctors and the midwife at Levanger hospital. I’m sure they thought I was “mad”, but I was right, so I said “Would you look at that – Snåsakall`n predicted that many years ago!”

Snåsakall`n predicted the twins many years ago 🙂

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The time after I was told I was pregnant again was a bit weird. I couldn’t breastfeed Elias any longer, so he never got weaned off breast milk. That had to stop right away and he was straight onto bottled milk. He handled it really well. Maybe he understood he just had to like it. I kept losing weight and was down 10kgs pretty quick. I looked like a walking corpse. Pale and skinny as I was!

During my twin pregnancy I was in great shape until it started getting crowded in my stomach. And to put it mildly; it is not very pleasant to be kicked in an infected gut! Luckily I had Elias to think about, so I put myself second the whole way. I was studying at the same time as taking care of a little boy; it took my mind off the “Crohn nightmare”. The body is put together in a way that the babies will take the nourishment they need, but then there’s not much left over for mum! There were many months I was barely there, to put it that way! But what don’t you do for your kids, both the ones on the inside and the one needing his mum every day on the outside. There was no time to lie down and be sick! I have a high pain threshold.

Two girls on the same side in the stomach – not recommended!

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I had a few visits to the doctor and the test results weren’t showing what the doctors wanted, so that made the choice to move back home to Stjørdal a pretty easy one. I felt I was a bit too far away if something was to happen to me, and they know me the best at the hospital I’ve been going to for many years. Elias and I moved home to my family, and also with a glimmer of hope that the council of Stjørdal and Levanger Hospital would help me…

That was easier said than done. I could feel that my body was far from at its best, but it’s amazing what you can manage if you have to! My body was working in overdrive for several months. It wasn’t good, I can look back now and see that, but at that time I had no choice. Because where was my help???

I got to rent a large and beautiful house. It was actually the neighbour house of my grandparents – the family homestead Mettisun. “Hegra’s nicest homestead” 🙂 I grew up there so it suited me perfectly, then Elias could run down to his great grandparents every now and then. My parents also lived just a stone throw away, so this was perfect for me when it came to getting help.

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But no-one could’ve predicted what was about to happen…

Slowly but surely I got worse. I had to just bite the bullet and apply for help! I got great support from my regular doctor and we started well ahead of time with the application because we knew it could take time, but I would need the help when the girls were born. There was no way around that. I knew that I’d most likely have to have surgery as soon as they were born, so we decided it was smart to be prepared ahead of time! We met resistance from the council straight away. We were going to need many rounds to fight that battle, and I had no strength left… In the end the meetings got worse and worse and I didn’t want to go by myself anymore. It was too hard, simple as that. From then on the meetings included my doctor, a nurse and a social worker from Levanger as well as the council representative. We believed surely then it would be clear what kind of help I needed… even though I have a journal big enough to kill a moose! NO UNDERSTANDING WHATSOEVER – my disease wasn’t defined in the category to receive help, I was too young so it became too difficult to help me! Even though there wasn’t even a sliver of doubt that I would be needing help for the kids’ sake if I had to go through surgery and become really sick. A mother will always do everything in her power to make sure her kids will be ok; at least that’s the case with me…

 

Time passed and summer became fall, fall became winter, winter became spring…

The council was still not accommodating. They were quite difficult and straight out rude. I had enough with taking care of Elias and make his life as good as I could – and I managed to do that. I was admitted to Levanger Hospital with Elias and my parents have been absolutely amazing to be there for me. I can never thank them enough for that! I had become too sick, and needed nourishment and medications. This was not optimal considering the twins, but we agreed that I had to get back onto the medications again. Something I was strongly against!!!

My mother heart was beating so strongly. But they promised me everything would be fine. They followed up on me closely. I was scared but I had no other choice but to trust the doctors. Time passed and I was in and out of hospital, had an ultrasound once a week and even more often than that the closer I got to my due date…

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Me and my sister were pregnant at the same time during our first pregnancies. Me with Elias and she with Kristoffer. There’s only three months between our boys, even though they were born in two different years. But that’s how it is when Elias decided to come out on New Year’s Eve. We became really close after being pregnant together, and we still are. We were enjoying ourselves having coffee and went for many walks with the babies together. I don’t like regular coffee, so we always had to go to “Hos Oss” so I could have my latte and eat cheese cake. This was another one of those days – we were out walking on our way there. We were crossing the road and it was really slippery. I was walking Elias in the pram and did of course manage to fall face first onto the ice. I realised pretty early that this was going to end in disaster, the only thing I could think was “don’t let go of the pram” because if I did it would roll onto the street! I held on as tight as I could to the pram and fell straight forward onto my stomach. It didn’t hurt, but I got really worried for the girls inside my stomach. I got help to get up and was trying to “feel” if everything felt ok. I could feel nothing – Gøril kept cool and managed to calm me down. We were sitting down in the café when I all of the sudden felt discomfort down my back, and it didn’t stop either, it came and went… Hmmm, this was something I’ve felt before!!! I’m in labour but it’s way too early…

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We drove home and of course Daniel was still in Bø as he had some mandatory courses to complete related to his studies. So Gøril had to come with me to the hospital. We took a cab, it was a long and difficult journey to the hospital. I managed to stop the labour, but I had to stay in the hospital for three weeks so I could reach the magical week where the girls’ lungs were developed. I had to stop labour nine times. I wasn’t allowed to sit up, I had to lie down or stand up for three whole weeks. That was one thing, but my stomach was being very difficult on top of that so I was on a lot of medications, and they wanted to remove the girls by a C-section. I didn’t want that, Daniel was too far away, and Elias had to stay with mum. It was tough to be Ingrid then, I can tell you that much! I really got to test my mental strength.

Surely now then the council would help me? Nope… I didn’t even get Elias into kindergarten… I was on a really long waiting list! Completely unbelievable – almost unreal! I got to go home once I passed the magical week because they weren’t going to stop labour again then if it started. Luckily by then Daniel was home, because I was only home for two days before it started again…

I remember it like it was yesterday! I was helping my aunt painting her new house. They have always been there for me so when I can I’m there for them as well 🙂 They were coming to pick me up, but I was just walking around with massive pains in my back. Not in my stomach, but in my back, so I just figured I had slept on it funny. I was really moody and snarled at my mum when she asked me if maybe I should call the hospital!!! NO – don’t talk to me, was my answer! My uncle then walks up to me… Ingrid – you’re in labour, get to the hospital.

A few hours later the twins were born 🙂

Their birth went quickly; it only took two hours before the girls were out. Daniel was as usual really supporting through my pain, and I can’t remember trying to hit him this time. 😉 He was amazing and helped out as best he could! I gave a natural birth and there is 7 minutes between the girls. Tuva was out and I was really relieved… Then the doctor says dryly, just one more to go then! Damnit I can’t do it!!! I got to breathe for 5 minutes before I had to start pushing again. Vilde hadn’t turned, so they were ready to take me into surgery… Not going to happen. I am not giving birth and having a C-section on the same day, no thank you! He told me I had to push really hard, else it was straight to surgery! That’s when I found the strength I didn’t know I had, and Vilde was born.

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The time after that was of course really hectic. Three kids at 1 years old and 3 months old… Our home was quite chaotic, to put it mildly. We had great help from my family, and Daniel was there all the way till the girls were three weeks old, but then he had to go back to finish his studies. The girls were born the 7th of March 2004.

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You should think by then the council had had plenty of time to find a solution for help. I organised another meeting, but still no solution. You can get depressed from less. I needed the old arrangement called “housewife help” they told me, but it didn’t exist anymore. What do you do then… I became sicker and sicker. I was just skin and bones and in a really bad shape. I lost my breast milk when the twins were 2 ½ months old. My body was completely done! I saw the doctor and had phone conversations with the hospital every other day. I was even admitted to the gastro department at Levanger Hospital with all the kids. I was back to running to the bathroom 20-30 times a day, blood and slime. And not to forget pains out of this world.

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I had Elias climbing everywhere, he started walking when he was 9 months old, so he was everywhere! I often put the kids in a baby chair in the bathroom because that’s where I was… I clearly remember a specific episode where I was completely exhausted and had been running in and out of the bathroom several times. I could hear Elias in the living room and the girls were on the bathroom floor… I could suddenly feel that this wasn’t going to end well. I was leaning up against the wall while blood was rushing down into the toilet. We’re talking dark coloured blood; it was painful, worse than giving birth. I understood where this was heading… I called mum, dad, the neighbour, Daniel, my sister, everyone in my phone book, but no-one answered! I have to call the emergency number, I thought… I am going to pass out. Last try – grandma! Luckily grandpa picked up, so he came over and helped me and took care of the kids. At the time he was 70 years old and had just had a hip operation!

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That same day I had to get picked up in an ambulance.

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The message from the hospital was disheartening, but not unexpected. Crohn’s Disease was active and ravaging through my body. If I had gotten help from the council, something that was my right, this wouldn’t have become so serious. I can understand that they don’t know everything about every disease, that things are hard to understand. But not after all the meetings I had and all the information from specialists they were given. The only thing standing in the way of me getting help was a willingness to understand and money. It is so upsetting to think about that I get a knot in my stomach when I see the council representatives. I have actually experienced having to vomit after running into these people on the street. Should it really matter where in the country you live if you get help or not? I get so angry and upset that it was so hard to get help just because I have a disease that doesn’t show on the outside. If being seriously ill, 40kgs, mother to three and fresh out of surgery doesn’t qualify to get help, then what does?

I spent a few weeks at the hospital, got some medications, and finally managed to get back home to the kids. Daniel was travelling between Bø and Stjørdal every week, 700km one way. That is not ok. Still no help from the council! My mum went out in sick leave while all this was happening. This couldn’t go on any longer as it was wearing on both me and my kids’ health! Just so I’ve mentioned it, she was on sick leave for almost 2 years!!!

Where is the welfare system when you need it the most?

In one of my meetings the agent managed to ask me what my grandma, great grandma does for work… Can’t they help you? HELLO – it is not their responsibility to be free help for the system. They’re meant to be family. Talk about being rude and trying to pass on responsibility! I fought with the council for over a year before they approved someone to come clean my house for two hours every Tuesday and Thursday. Yes it helps, but it’s just a tiny drop in the ocean! I was so sick that my life was hanging by a thread when the twins were 8 months old. I had to have a colostomy, my intestines were completely consumed by infection, and there was no other way out. I had 2 choices – having a colostomy or find a new home at the graveyard! Right there and then I thought the last options sounded the best… I was completely exhausted, and the thought of such a dramatic change to my life was unbearable. I would rather die than have a bag on my stomach…

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Isn’t a ostomy just for old people?

Fresh out of surgery, in pain and with a massive change to my life. I had to get to know a new body part. A new life with stoma is serious enough as it is. I had a boy and two girls I couldn’t lift. I couldn’t help with anything, I needed help myself. So Daniel wasn’t just a dad, he was my partner but he also had to be my support and my helping hand. He had to be a nurse and a house wife, and I was in need of care for many months! It’s not easy to fight against the system then – he had to give up on his studies. He had too many days of absence to get it approved. That was money straight out of our pockets that we never got back 🙁 We received no understanding, which makes it hard to trust and respect the system. The system had failed us completely. Because I was too young and had a disease they hadn’t dealt with before they couldn’t find any valid categories for us to receive help… Where is the logic? A family in dire need of help, showing that they really just want to get by, but are too weak against the people with power… The picture below shows how a big part of our life was spent, I couldn’t get anywhere. The kids were around me but I was too weak to hug them! I hardly had the strength to hold my phone or a glass of water. It hurts to not be able to do normal mum things, because you are half dead in a bed in the living room… You can see your life passing in slow motion – but you can’t do anything. I felt useless and worthless. If it wasn’t for Daniel and my family, this would NOT HAVE ENDED WELL.

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When I look at this photo I can feel a lump in my throat and my eyes tearing up… I feel we’ve been punished and overlooked because we had a large family that they thought should be there for us…

What if I had received the support I had the rights to…

What if I had been taken seriously…

What if I hadn’t survived…

What if they had seen the family as a whole…

What if mum and co hadn’t helped me…

IF I GOT HELP IN TIME, WOULD IT HAVE GONE THIS WAY? COULD I HAVE AVOIDED HAVING TO GET A OSTOMY BACK THEN?

To be continued… in part 8 of my story “can it get any worse?”

This is my story – watch the teaser: 

http://youtu.be/bwOHWMm8tug

I have always liked music and I often listen to the lyrics. I use them as «therapy» if you like – but for me music is important. I’ve listened to this song a lot when the storm was at its worst. Put it on loudly and get lost in it! I think more people should do that!!! – make a difference – <3 Elias <3 Tuva <3 Vilde <3

http://youtu.be/V1xyDFPLgCw