It can be TOUGH to have a tough «exterior»…

08/09/2013

This post is also available in: Norwegian Bokmål

It can be TOUGH to have a tough «exterior»…

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In yesterday’s local newspaper I «revealed» a secret and made myself so vulnerable that I’ve been struggling to finish reading the interview… One thing is for certain, I have NOT gotten any form of apology from the St Olav’s Hospital myself. I’m incredibly disappointed that it came by e-mail to the newspaper, Stjørdals Blad. It is easy in hindsight to apologise, it’s something everyone would’ve done to not lose face. But are they going to change anything? Do they contact me? Follow up on my case? I highly doubt it, but trust my words!!!

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“I am not giving up, I’ve been stepped on one time too many! Enough is enough!”

Where should I start – I hope you have been reading my blog and the parts called «My Story Part 1-10». There you get an insight into my life as a chronically ill person in one of the wealthiest countries in the world. I’ve had my fair share of hospital visits, I’ve had surgery over 30 times. But what really topped it off was after my nine month stay at St Olav’s hospital in 2011. I was close to death several times, and because of that, “small” things were overlooked… Such as how scars looks, follow-ups with a psychologist, adjustments to the stoma. The skin has to be relatively flat under the stoma plate so that it attaches on properly, if not leakages can easily occur. Since I have been through so many surgeries I have a lot of scars on my stomach, and as a result of that I’ve had many problems with leakages.
After nine months in hospital all I cared about at the start was being home with my family and my kids, those other issues didn’t matter so much… as long as I was with my three kids and my husband. But when I got back to everyday life, this became a huge problem! I was promised by the hospital that they’d fix this, NO PROBLEM! What happened? I was put at the back of the line and was waiting and waiting, nothing happened.
I have been so patient with these people that I can’t keep it in any longer. I’m sitting here with tears in my eyes while writing this, not only because I am so over it but also because I am so furious. I cannot understand that doctors can put other people’s life so “at risk” and not clean up their own mess. Not everyone is this mentally strong – I have to be else I won’t understand anything. What me and my family has been through has been like hell. They have treated us like shit. Like we weren’t worth more than the dirt under their shoes. I was told where the land lay during my last consultation with the specialist at St. Olav. She was well prepared for this consultation – I got to finally see her after many complaints from my regular doctor. I guess I was sent there as an emergency after I yet again broke down when seeing my doctor. My doctor felt that it was critical, both physically and also mentally. I didn’t want to go alone because I was scared I wouldn’t be able to say everything without crying and becoming flustered, so I brought my husband with me to the appointment. There she was with her hands in her lap, obviously not interested in helping me or being criticised. I had brought suggestions about what could be done, after all I’ve lived with stoma for 8 years and I know my body very well. I should NEVER have done that… The specialist’s statements/claims/promises were as follows:

– I had to remember who was an educated physician and who was the patient
– My suggestions would NOT help solve the problem with leakages
– Isn’t it all just mentally hard, and that’s what it’s all about? Isn’t it really just cosmetic and superficial reasons for wanting to get it fixed?
– She thought I was lying about my leakages and how big an issue they really were…

I am 31 years old and want to be able to take my kids to the beach without having to worry that if I bend down feces might start running down my legs 🙁 “It’s not really a human right to take your kids to the beach…” is what I was told 🙁 My god, I thought, surely I too should be able to do normal things with my kids.

– You don’t take out enough «stoma equipment» to have as many leakages as you claim…

By making that statement during my appointment she had me doubting all the stoma nurses and my doctor that has been fighting for me all the way. This was very hard on me, and I really started to doubt the people around me. Because of that the first thing I did after my appointment was contacting my stoma nurses and specialists who luckily could dismiss her statements. For one the doctor isn’t allowed to do this without clearing it with me. This is confidential. I therefore called my specialist , and they could confirm they’ve had no calls from the hospital.
I also explained to the doctor that we have two beds now because I have so many leakages during the night, and I don’t want my husband having to wake up night after night in my feces… What she then managed to tell me was that “Yea, about 70% of everyone in a relationship where one has stoma ends up separating…”

“Yea, about 70% of everyone in a relationship where one has stoma ends up separating…”

That was the least clever thing you can tell someone that is already so far down 🙁 I was completely shocked by her statement and my blood started to boil sitting there in the consultation.
And saying that having one leakage a day isn’t THAT much – I don’t think there is anyone in Norway that thinks it’s ok to shit your pants once a day?
She PROMISED me dearly that she would collect all the information she could and set up a meeting with me and other parties at the hospital within two weeks… I told her that this was impossible… I do after all have 15 years of experience dealing with the medical system. It was just before summer holidays and I know things there happen slowly. She then briskly tells me to stop being so negative and pessimistic!
And what happened? Of course nothing happened. She called me late the last day (eight days after she had promised to get back to me) before she went on holidays and apologetically told me that it wasn’t happening but she would get back to me towards the end of August. She goes on to wish me a nice summer… (I have this recorded on my voicemail) NICE SUMMER??? With pains, leakages and a worn out family! She also wouldn’t have called me had I not called my doctor that same day and followed up… Two hours after they contacted St Olav I got a message to my mobile! I called them back – she didn’t answer!! I wasn’t able to pick up the phone because I was in the shower after my fourth leakage of the day 🙁

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A little story from one of my thousands of episodes – Saturday 4th of May 2013

This day started like any other. The girls were having a sleep-over at a friend’s place and were out playing in the sun since school was out. I had agreed to come over there and have coffee after I had dropped Elias (our 10 year old boy) off at the soccer field. Just like many other days Elias wanted to go practice his soccer before 9am… I managed to make him wait till 11, but then we had to go! He was going to practice shots and formations he told me… hehe <3
I wasn’t in as much pain, so I decided to put make-up on and put on some nice clothes. I wore a new shirt and a skirt. Boots even 😀 I felt a bit healthier, and for a little while I forgot I was fresh out of surgery. This was day four after my re-surgery to fix my leakage problems. Skin adjustments around the stoma. Something I’ve tried countless of times before without success 🙁 I had a small hope that maybe this time everything would work out… but that wasn’t about to happen. I didn’t even get a full day before the first leakage was a fact!
I dropped Elias off at the soccer field and agreed that he would call me when he wanted to come home. Something I understood would be quite a while 🙂 I then continue on towards Stjørdal and decided to get a latte on the way. I felt a bit iffy and unwell in the line at the coffee shop, but it had been a few hours since I’d had any painkillers, so it was to be expected I’d feel the stitches and the wound. When I get my coffee I turn around and face a woman with the worlds’ kindest smile. She smiles at me when I walk past her, and when I get to the door she calls after me. “Ingrid – your presentation was so amazing and inspiring. Thank you for the job you’re doing, you must be the toughest woman I know. This is something everyone would be better off seeing and hearing.” WOW – that was nice. Can you imagine how proud I felt? Actually I was a bit touched and embarrassed. I’m just Ingrid. Being a bit tired and with stomach pains hearing that made me feel so much better… 🙂
I got in the car and drove up to Hegra and to a friend’s place where the twins were. I hadn’t actually been into their new apartment, so it was very nice to be asked in for coffee and a girl’s chat. I was home alone that weekend because Daniel was in London with the boys. “London calling” 🙂
The kids were playing and we were drinking coffee and guiltlessly eating treats… it was Saturday after all! My friend had some other girlfriends over and they were really lovely ladies. I had never met them before but it felt like I’d know them for years because we had so much in common. We laughed and had a great time. Vilde wanted so badly to go home and was telling me that “Ida” could come for a sleep-over at our place… Mum pleeeeeeeeeaaaaase!!!! It’s not easy to say no to that 🙂 Ok, that’s fine. They went to pack and were ready in under a minute… And then they thought I was being soooooo slow not coming right away. But we were having such a great time and the chatter was going. I stood up and was standing in the middle of the floor when the topic of London came up. I wasn’t moving then. I told them about places to go and tips etc. I love LONDON so once you get me started I won’t shut up…. 🙂 The girls went to sit in the car after I told them… I’ll be there in 2 minutes… Yea sure, Tuva tells me 🙂 She knows her mum a little bit too well!
Then out of the blue I feel pain/discomfort and something warm down my stomach. I’m thinking, oh my god no, get to the bathroom!! “Can I borrow your bathroom?” is all I manage to say when I realise what is happening. I turn towards the bathroom and realise that NO it’s too late…. OOOOH NO I’m bleeding, I say loudly and look “Ida’s mum” in the eyes. I can see she gets scared and doesn’t know what to say or do. But I can tell she understands very well what is about to happen. My god, it’s running down my thigh, onto my boots, on the floor. It’s not a small leakage it’s a HUGE leakage. I see one drop, I see two, I see a whole puddle… I’m in the middle of the floor of my friend’s living room with people around me that I’ve known for 1 hour, and I’m covered in feces. I panic, what do I do? I try to walk towards the bathroom, but that only makes things worse. There’s a lot coming, large amounts are running down my stockings, boots and hit the floor. It feels like I have my period. My underwear is full of feces. I’m scared, shameful and it hurts! I manage to get to the bathroom and close the door. The tears are coming, I’m sobbing. I turn on the water so that they won’t hear how loud I’m crying. I cover my mouth with my scarf to stifle the sound. I don’t know what to do… Here I am in the bathroom of my friend’s new apartment. On her living room floor is a puddle of feces, liquid from the wound and blood. I don’t want her to clean up after me… but what do I do? “Ida’s mum” is calling through the door… Can I help you with anything Ingrid? I’m sorry, I’m sorry.. I’m slowly dying on the inside. All of a sudden I’m three years old and terrified. I’m having a panic attack and no idea what to do. Where is the famous hole in the ground when you need it??
I can hear one of the kids walking towards the “puddle” and I hear the mum go “nooooooo” – Oh my god this is not happening. Is this a dream, can someone please wake me up from this horrible nightmare!! “Ida’s mum” comes into the bathroom and gives me a hug and tells me not to worry about it, she’s cleaned up the living room. Can you imagine anything more humiliating than being in a situation like that…. I’m sobbing loudly and apologise to her a thousand times… She tells me, Ingrid DON’T worry about it – it is not your fault! I’m going to take the girls to the shops and buy some ice cream. Then I’ll make dinner for them here and you can drive home. Then the girls won’t understand what has happened. I’ll drop them off at your place later when you’re ready for them to come home. No-one needs to know about this Ingrid, no harm done.
I manage to say thank you and is left in the bathroom «dirty and unwell». I clean myself off as best I can and manage to clean up most of the visible damage. I clean the floor and carefully open the door to the living room. Out there is a bunch of baffled women not knowing exactly what to say. Of course I break down again and am yet again fighting the tears – trying to be strong, but I can’t! One of them gives me a hug and gets me some make-up remover to get rid of make-up not being where it’s meant to be before I get in the car. I walk calmly to the car, put on my sunglasses and drive the “long” way home. I’m crying, I manage to reflect on my whole life during the 7 minute drive home.
THIS is not a life I want to live…
THIS is not how things are meant to be…
I don’t deserve this…
My kids or my husband Daniel doesn’t deserve this…
I run inside, lock the door and am standing in the hallway crying out loud completely alone. I need to take pictures – I have to take pictures, how else will they believe me at St. Olav! I’ve fought such a long and hard battle about these leakage problems but not being believed because I’m too SKINNY for it to be THAT bad. I take three paralgin forte and 2 vival. Pick up my phone and take the pictures, all the while crying, shivering, and if there is a rock bottom I think I can’t be far now! I don’t have anything left to give. I take pictures of everything, clothes, shoes, stomach, wound, and it’s running onto the floor… There’s just no end to it. Where is it all coming from? It’s like water… I walk into the shower and sit down and stay there until the water is freezing. How long I was sitting there in the «haze» I don’t know, but I am freezing so I get out and I start crying again. I want to call Daniel… but no, I don’t want to spoil his trip to London. What can he do anyway..? Being hundreds of miles away…!
No Ingrid, you have to fight this battle yourself – against yourself! It’s a fight you either win or lose and it’s ONLY up to YOU what the outcome is…
But one thing is for certain, I manage to understand how the people choosing to take their own life must feel, or at least I think I can understand it. I’ve been as low as it gets but managed to get my mind back on track. I think that’s what the ones choosing a different way out can’t manage, and that’s why they choose to take their own life… Somehow I know that I’m mentally STRONG, that’s why I can do this – It’s incredibly painfully, hard and awful, but I can manage! I’VE GOT NO CHOICE! I have three beautiful children, a husband and I love life 🙂
Together with my doctor I made the decision to have an operation through a private hospital. From I made the appointment it took one day and to get the surgery one week – but I had to pay for all this myself, and it was expensive! Because the healthcare system of Norway doesn’t have an “agreement” about operations like these! This is something I’ll have to try and claim back later. It has been over a month since the surgery, and I haven’t had a single leakage since the surgery! I can’t remember the last time I had such a “break” from my problems! Who was right? The one with a doctor’s degree or the one actually living with the disease and having had stoma for the last eight years? The surgeon at the private hospital was shocked by my situation and the way they had treated me as a patient.

Who was right? The one with a doctor’s degree or the one actually living with the disease and having had stoma for the last eight years?

Should it really be that way in this day and age, that you’re not allowed to give hints/tips/advice to doctors? Is it like putting your foot in it, swearing in church and shooting yourself in the leg all at once? In that case I feel sorry for the next generation to grow up in this society… I think professional pride took over at St. Olav in this case, and the person it hurts is a simple mum – someone that’s normally quite tough, but in this case were stepped on and spat on by the system.

Knockout – I survived… not everyone does… Who is taking their case?

The last words haven’t yet been spoken in this case, so stay tuned!

-make a difference-