Body image, Chronic health condition, Depression, Doctors, Gastroparesis, gluten free, Misdiagnosing, Uncategorized, Vegan

Misdiagnosing

Misdiagnosing a patient isn’t something a doctor wants to do but sadly it happens. Doctors are only human after all; even if they do act like they’re better than everyone and everything.¬†

I myself have been misdiagnosed a couple of times in the 3 years it’s taken me to finally get an accurate diagnosis. My chronic fatigue was easily diagnosed but diagnosing my gastroparesis hasn’t gone well at all!¬†

3 years ago I started getting really bad stomach aches and would alternate between diarrhoea and then constipation with a lot of blood in my stool. I was also bloated and looked pregnant (I still do but the doesn’t matter at the moment). Anyway, mum and I went to the emergency room at the Royal Childrens Hospital 4 times because of my double over stomach pains and the blood in my stool and every time they would do a blood test and then send me home. They never did anything more than take my bloods and get me to talk to a doctor. They referred me to one of their gastroenterologists and got me to talk to a social worker. They really weren’t any help at all. Well, I saw the gastroenterologist and he put me on the waiting list for a colonoscopy and endoscopy; that was meant to happen in April and I finally got in in November (even though I was on the category 2 list). I got the scopes done and the gastroenterologist told me that nothing was wrong and to come back in a couple of months.
Of course mum and I weren’t happy with that so we got a referral from my GP to see a paediatrician and to see if he could help. We went and saw the paediatrician and he straight away diagnosed me with the chronic fatigue which was great because now I had an answer to that and also to my heart problems but we originally went there for the stomach issues so we told him all about it and what had happened. I think it’s important that I also tell you that I was in the psych ward at this time. Anyway, so he basically told me that I was obese and needed to lose weight and then all my stomach issues would go away. He also made me get an X-ray which he told me was normal but when I went to my new gastroenterologist he told me that it WASN’T normal and that I needed to fix the issue ASAP. So after telling me that I was obese, grabbing my fat, telling me there was nothing was wrong with me and making me get an X-ray and then saying it was fine when it wasn’t he sent me on my merry way and told me to come back in a year or never if I didn’t need to see him.

I mentioned before that I was in the psych ward and that I thought that that was important to mention because what doctor who knows that you’re in the psychiatric unit at the hospital and knows that you have problems with your weight tells you that you’re obese and that you need to lose all the weight and then you’ll be fine? I was obviously in the psych unit because I wasn’t doing well and I had told him that part of the reason I was in there was because of my weight gain. Safe to say that I never went back to him!¬†

After that failure with the paediatrician¬†mum and I went back to my GP to get another referral to see a different gastroenterologist (Lets call him Bob) ¬†because nothing with my stomach had improved and it was actually getting worse and not better. So off we went to see another gastroenterologist; this time it was privately and hella expensive. Bob thought I had ulcerative colitis at first and put me on steroids and another medication he also booked me into hospital for another colonoscopy and MRI. I ended up staying in hospital for a week while we tried to figure out what was wrong with me. I had the colonoscopy done and once again nothing showed up and nothing showed up on my MRI either. I was so frustrated when nothing showed up, I didn’t want ulcerative colitis but I also didn’t want to not have an answer. I was tired of seeing doctors and getting told there was nothing wrong with me when I KNEW there was something wrong with me. I got discharged from hospital and went back to see Bob. He told me that he didn’t know what was wrong with me and then sent me home and told me that I had to do a bowel flush out every month. If you’ve ever had to do a bowel flush out to get ready for a colonoscopy or just because like me, then you know how disgusting it is. I mixed it with apple juice and now I can’t drink apple juice, I also used a certain glass for the flush out liquid and now I can’t even drink from that glass because it reminds me of the flush out and how disgusting is. Yuuuck.
So I did that and it didn’t help with the symptoms at all so I went back and he told me to try this medication which I did and it didn’t help at all; it made me feel really sick. Sent me back home. I went back to Bob a few months later and he said that I should do a gastric emptying study. So I did that test and… FINALLY an answer! My stomach empties 1.5 to 2 hours slower than the normal stomach. I asked him if it was gastropareis as I had been doing my research and he said yes. So there you go, after 3 years I finally got diagnosed with a rare and horrible disease called gastroparesis. Bob hasn’t told me anything about it so I’ve had to learn what I can on the internet and through Facebook groups. He also said that I need to see a pelvic physio who I’ve been seeing and has given my exercises to help me relax my pelvic floor and to help my bowel motions come out a bit easer and for other stuff…¬†

Bob put me on a new medications and it has really helped. I can now eat most meals without getting double over stomach aches and horrible nausea. The medication doesn’t work all the time so I still get the stomach aches and nausea but it’s not every meal I eat. I’m still bloated all the time and look pregnant which really gets me down. I pretend with mum to have maternity shoots and pose in funny positions because it’s easier to laugh about the way I look than to remember and think about the fact that I’m 18 and look pregnant even though I’m not and that I will always look pregnant and be bloated. Since Iv’e lost weight the bloating has become a bit smaller so I’m hoping that the more weight I lose the smaller the bloating will get. But that’s another thing, gastroparesis can cause either weight loss or weight gain and I suffer from the weight gain aspect of it so it is so ridiculously hard to lose the weight that I’ve gained. It takes me months just to lose 500 grams and that’s with walking every day. I also eat pretty well. I’m vegan and gluten free and I don’t eat much junk food at all. It’s so discouraging and annoying to try so hard and to not see results.¬†

Since Bob hasn’t told me anything about gastroparesis and I’ve had to google it, I’ve come across some scary facts about it. I never knew it was such a serious illness! People die from it and it’s scary. I’m not saying that I’m going to die from it but I am worried that I will get worse and I’ll end up with a feeding tube in hospital not being able to eat or drink… Gastroparesis is scary and I’m scared.¬†

So, here I am! Finally got my stomach issues diagnosed along with my chronic fatigue. Now I just have to get my fibromyalgia verifed and diagnosed. 

Keep safe,
Maddy xoxo 

Follow me on twitter if you’d like xx

PS- I got a puppy! Her name is Asher and I’m going to train her to be a therapy dog and get her certified so she can go everywhere with me and support me out there in the scary anxiety inducing world!¬†

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Death, Depression, Family, Grief, Step-father

What happens after (Part II)

This post is a little traumatic when talking about my brother, proceed with caution.

So we’ve covered the horrible step-father, getting kicked out of home and the plethora of health conditions, now we’re going to cover my brother dying and then write about my anxiety, depression and my suicidality in part 3.

My brother dying:

I was at the pain clinic for the day getting all my assessments done and I was talking to the psychologist and she asked me if my brother dying was a shock to me and I just thought what a stupid question that was to ask. No, I totally knew Chase was going to die and it wasn’t a shock at all (include heavy sarcasm when reading that). Like seriously? Who even asks that?! Of course it was a shock!¬†The psychologist also asked me to explain what it was like Chase dying, it was not only a shock but a heart breaking experience that I will never ever be able to articulate and understand. I will never be able to explain how it was¬†to watch Chase loose all his motor functions and the ability to walk, talk, eat and eventually breathe. I will never be able to explain what it felt like when I literally saw him take his last breath or what it was like to see his little blue coffin with superheroes all over it get lowered into the ground. Or how he looked before we nailed the coffin shut. Those memories will haunt me for as long as I will live. So yes psychologist lady, it was a complete shock when Chase died.

On May 31st it will be 4 years since Chase died and I still haven’t fully come to understand what that means. I’ve mentioned Chase before and a few memories but I thought that I will write down the whole experience in this post.

Here it goes:

It was a Thursday evening at home and Mum had noticed that one side of Chase’s face seemed to droop a little bit. She then asked him to do some pushups and he couldn’t do them (he always could, he was a strong little man) and when he stood up he was all dizzy and nearly fell over. This was not normal behaviour and now we were all a bit worried. The next day (Friday) Mum took him to the Royal Children’s Hospital to get him checked out. She was there all day and all night. When I got home from school on Friday Michael had to go into the hospital because Mum called him telling him that a neurologist and oncologist wanted to talk to them because they had found something on Chase’s MRI. Michael drove us all in (Michael, Dusty and me) into the hospital and we met Micahel’s brother Paul there. Michael left us with Paul and went to go find Mum.
I didn’t know what was happening and what was wrong wth Chase or that Mum and Michael had to have a meeting with the oncologist and neurologist, I learnt this later on when Mum told me. Paul took us (Dusty and me) to McDonalds and then to get ice-cream at the Docklands. Paul wouldn’t tell me anything that was happening and after the ice-cream he drove us home. I had to go into the Royal Children’s the next day (Saturday) for an MRI of my shoulder. Paul drove us in that morning and we met Mum in Chase’s room. I still didn’t know what was wrong. Mum was crying and Chase was just sitting on the bed playing with one of his toys. I got the MRI of my shoulder done and I drove home with Mum and Chase. In the car when Chase was sleeping I asked Mum what was wrong and she started crying again, I asked if Chase needed brain surgery and she said no. She then said to me “Maddy, Chase is VERY sick.” I then started crying also and asked if he has cancer, Mum said yes and then I yelled out “NO” and told her that I thought she was lying. Mum said she was sorry and that she would tell me everything tonight. We went home and Chase wanted muffins so I made him some muffins. That night when he was asleep Mum told me that Chase had Diffused Intrinsic Pontine Glioma (DIPG) and that it was terminal and that he didn’t have much longer to live.

My aunty drove up from her farm Sunday and we had all our family come over. I took Monday and Tuesday off school. On Tuesday Mum and Michael went back to the hospital to talk to some more doctors about what could be done. Basically nothing, Chase could’ve had radiation and chemo but it would’ve been for every day for 6 weeks and it would’ve only made him sicker and not actually help anything and even if it did shrink the tumour a little bit and give him another few months he would’ve spent those months in hospital incredibly sick from the chemo and radiation. So Mum and Michael decided against doing any of that and took him home: plus Chase hated hospitals.
I went back to school on Wednesday and got the school counsellor there to tell my home group and teachers what was happening. We didn’t tell Chase what was happening, he was only 5 but he was so clever and smart that he knew what was going to happen to him anyway. He started asking Mum questions about death and what happens after you die which was weird because he had never asked those questions before and he was only 5 and what 5 year old asks about that stuff?

We had an early Christmas and birthday because we didn’t know if he was going to make it past his birthday and to Christmas. The ¬†Make A Wish foundation funded the birthday party for Chase. They hired a limo, had people dress up as superheroes, rented out Ace Space, got a birthday cake made and presents donated. They did a great job and I thank Make A Wish for everything that they did.

Chase started deteriorating pretty rapidly; from diagnosis date to the day he died it was 12 weeks. March 8th to May 31st. Chase lost the ability to walk so he had to be carried everywhere and then the ability to talk, swallow properly and then to breath.

I was still having to go to school and do all that, that was because of Michael. If I had it my way I would’ve been at home with my brother who was going to die and spending as much time with him as I could.
Chase only really wanted Mum throughout the whole thing. She was amazing and I will never know how she did it. She literally became an angel and looked after Chase with so much love and support. My heart aches for her when thinking about everything she went through.
With Chase only wanting mum it was hard for me to spend any time with him. I did teach him to play crocodile crocodile though and that was nice. I don’t resent Mum or Chase for that, but it does hurt that I wasn’t able to spend as much time with him as I would’ve liked…

Now to the hardest part, the day he died:

It was a Thursday and I got up to go to school. Chase wasn’t awake when I left so I don’t even remember what the last thing was that I said to him or did with him was.
I came home from school and the palliative nursers and doctors had come during the day when I was at school. When I got home from school Chase was in his bed with a whole lot of needles in him for the medications they put him on (pain meds and stuff like that). I knew then that he wasn’t going to be around for much longer, I just didn’t know he was going to die a few hours later. The offical date and time that he died was Friday, May 31st 2013 at 12:12am.
At around 6pm on Thursday his breathing started to change and mum rang the palliative care team. They listened to it over the phone and told us that it won’t be much longer, I sat on his bed for most of the night holding his hand while mum was laying next to him. I also took a lot of pictures because I knew this was the last time that I would be able to. Chase was unconscious the whole time.
Mum stayed with him in bed while Michael, Dusty, Mum’s friend Anna, Dusty’s grandparents and me watched a movie in the lounge room. It wasn’t my choice to do that but anyways…
At 12:10 am (Friday morning) Mum yelled out Michael’s name and we all went running down to Chase’s room. Chase had died in Mum’s arms. We all stood there crying and watching him. He then he took a breath; the hope that I felt in that moment was like nothing I will ever feel again. I can’t even explain it, but then he breathed out and didn’t breath again, that was at 12:12am.
I literally saw my brother take his last breath. I can’t tell you what happened after that as I don’t really remember. I do remember Mum and Michael washed him and put him in new clothes but I don’t remember much else. I do remember that I finally went to bed at 4am and when I woke at 8am, Anna and I went and drove to pick Holly up (she was living in a share house somewhere). At 4pm, my friend Casey came over and she spent some time with me while her mum spent time with my Mum.

Mum and Michael decided to do the funeral themselves and not take Chase to a funeral home as they’re evil and don’t take care with people’s loved and departed ones. They hired a mobile fridge that was plugged in in the carport and put him in his little coffin and that’s where he stayed until Wednesday June 5th, 2013 when we buried him.

There were a lot of people at Chase’s funeral. It was no where near a ‘celebration of his life’. It was depressing, sad and tragic that we were having to bury our 5 year old son and brother. Mum wrote his eulogy and the funeral speaker lady read it out. I wrote a poem and I read that out myself.

Here it is:

Our lives go on without you Chase but nothing is the same.
Our broken hearts are opened wide when someone speaks your name.
I don’t know how we’re going to live a life that you’re not in and never again hear those superhero songs you loved to sing.
You’ll always be my baby brother that I kissed and held so tight and that is what I think about in the coldness of the night.
I love you Chase

After that was done we carried his coffin over to his grave and lowered him in, we then each got a handful of dirt and threw it on. There was a wake afterwards at the pub, we went to that and at around 4 I got a lift home from my neighbours. The next Monday, Michael made me go to school and we were made to continue with life as if nothing had happened and that we didn’t just watch Chase die and bury him. I still can’t believe Michael was able to start again that soon afterwards.
I had a really hard time at school with friends and classes. I spent a lot of my time in the Wellbeing Centre crying and trying to figure how I was meant to go on with life without my baby brother next to me.

I love Chase so much and he was my best friend. He was the sibling I connected with and got along with the most. He was my personal superhero and I miss him every single day. I think about him every day and every day I wish he was still here with me. Chase shouldn’t have died, he should still be here growing up and living and experiencing everything life has to offer. He would be 9 now if he was still alive and in primary school probably being the smartest kid in his class. He was so smart, loving, caring and such a beautiful soul. He was so wise and everybody who met him felt like they had encountered something special. Chase was everything and he was taken away by cancer. I still ask so many questions to myself and to my counsellors about why he died and why it was him and I will never get the answers that I’m looking for. I will never know why he died or why it was him. Chase left a big hole in my heart that will never be filled and I will continue to miss him and love him and cherish the memories I do have with him.

Chase will forever live in our hearts and he will never be forgotten. 

My psychologist gave me a quote when I first started seeing her from Jon Kabat-Zinn and that quote was: You can’t stop the waves, but you can learn to surf.
I honestly think that that quote covers grief. Grief does come in waves and I am learning to surf those waves and to try not to let them drown me. Grief is so incredibly complex and no one can compare you for what it feels like. 

I love you Chase. 

Keep surfing everyone,
Maddy xoxo 

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