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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Abuse, Body image, Chronic health condition, Death, Depression, Exhausted, Family, Grief, Step-father, Tired

What happens after (Part 1)

What happens after you have a horrible step-father, your brother dies, you’re kicked out of your home, you get a plethora of health conditions, you become incredibly depressed, you become suicidal and you have such bad anxiety that some days you can’t even look out the windows or leave the house because of how anxious you feel? What happens after all that? Well, it changes you in ways you didn’t know even existed and you learn to live with everything as sad as it sounds. How I’ve felt for the past 4 years has become my normal and that’s so depressing because my new normal is sh**! The only good thing I still have is my mum, that’s all. One person keeping me here on earth.¬†

I think I’ll talk about each issue separately starting with Michael:

A week after Chase died I was forced back to school by my horrible step-father, he went to work and my poor mum was left at home to deal with the silence and horrendous memories of the house alone. We were all forced to go back to normal by Michael (horrible¬†step-father) but how were we meant to go bak to normal when our normal had changed so drastically and completely in 12 weeks? I don’t understand how he was able to get up and go to work so soon after! Like what?! Who does that?¬†Michael also thought that two weeks after we buried my brother he would talk to me about how I’ve put on a little bit of weight and how I need to loose that and be more active outside. Yeah thanks Michael, that really helped. Psychotic asshole.¬†

¬†Michael was what you didn’t want in a father or step-father. He was angry, mean, cruel, hurtful, cold, selfish, fake, narcissistic, jealous, abusive and the biggest asshole to walk this planet. He was so mean and cruel to me for no reason. He used to tell me that I was fat and lazy and that I will end up smoking bongs on the couch doing noting with my life. After dinner when I would wash the dishes he would just sit in his spot at the head of the table and glare at me for no reason. I could feel him staring at me and judging me and sending his hate towards me while I was cleaning the pots and pans. He used to also lock me outside after I got home from school because he wanted me to spend more time outside and my mum couldn’t do anything because if she spoke up he would punish the rest of us and not give us money for food or firewood for the heater or water for the water tank and then mum, my brothers and I would all have to suffer at the hands of his anger. Mum stood up for me when he really crossed the line but in the end I learnt how to keep out of his way and stay away from him. When he wasn’t home after I would come home from school that was when mum and I caught up but as soon as I heard his truck or car come up the driveway I would run up to my room and not come back down until dinner time.¬†
I didn’t have much of a social life because all of my friend were scared and didn’t¬†like Michael, they didn’t want to come over and talk or see him and I don’t blame them, I didn’t want to be there either. I would often think¬†about running away but then where would I go? And leave mum there alone? I don’t think so plus I had no where to go.¬†

Michael started being mean to me at around the age of 10 as I was getting my own thoughts and feelings towards people and individuating into my own person. He didn’t like that I started seeing him as he was and not as the perfect do no wrong step-father I always thought he was. When I turned a little older that’s when the real glaring, judgement and negative comments would come.
When he and mum were fighting he would all of a sudden be nice to me and pay an interest in my stuff but that would only last until mum sucked up and apologise to him. Once they were back together and ‘all good’ again he would go back to not paying any interest in me and my school stuff and ignore my reports that I would want to show him because I got A’s and I was proud of that.¬†

Michael thought he knew everything about everything when in fact he knew very little. I understand that because he was raised by not very warm and loving parents and he grew up the hard way moulds him into who he is today but I don’t understand why he then has to teach his kids and treat his kids how he was treated. He never loved me, he saw me as a nuisance and a road block in the way of what he really wanted which was mum. When we used to go out as ‘one big happy family’ Michael would literally push me out of the way if I was walking next to mum because he wanted to walk next to her instead; how petty is that? I’m just a kid wanting to walk next to her mum and Michael the big bully has to come and push me out of the way. In the end it got very hard not to show my hatred towards him, it got harder everyday not to snap and tell him how much I hated him but in reality that would never happen because I was scared of him. He was a big, tall, angry, scary and a violent man. I never stood a chance.¬†

I don’t and never will blame or resent mum for staying with Michael for so long. I understand that she had no money of her own and no place to go or support, she also had Dusty (my other brother) and Chase to think about. We were stuck. All of us were abused by Michael and it has affected me in so many ways. Nearly every night I have a nightmare with Michael in it, if I hear a car that sounds like his I get anxiety and have to stop from having a panic attack and now I have such bad self esteem and body issues because of him and what he used to say to me that I loathe myself. I can’t look in the mirror without hating what I see. He used to also call me lazy all the time so now when I’m too tired to do anything because of my chronic fatigue instead of understanding that I have an illness and I’m unwell I just think of myself as lazy which means mum spends a lot of time reassuring me and reminding me that I’m not lazy and that I’m unwell with a medical condition and valid reasons for sitting on the couch watching TV.¬†

I often watch movies where the girl has the perfect dad who loves and cares for her and so wish that I could have what she has. I know that a lot of girls don’t have a dad like that but I still can’t help but wish that I had a dad who would do anything for them and who builds them up instead of smashing them down. Michael was a horrid man and I will always have to go through life with the damage that he’s caused to me and my body; mental and physical. I never want to see Michael or talk to him again, he contributed to my brokenness. One day I might be able to forgive him but that’s not right now.
I try, I really do but it’s so hard when I still think and am reminded about everything he did. It also doesn’t help that when Dusty comes over he’s a¬†constant reminder by the way he acts and what he says, he’s exactly like Michael. Dusty has no respect for me and thinks I’m fat and lazy just like Michael does.¬†

Getting kicked out of home with nothing but a few boxes of my clothes:

It was a Thursday night and mum and Michael had been fighting for quite a while. Mum had cooked us all dinner but Michael wasn’t home; he came home after dinner had been served and we had cleaned up. Dusty was still eating his though and he wanted some more cheese but we didn’t have any as we had used it for our dinner. Michael went and warmed up his dinner and Dusty asked for some more cheese, Michael went to the fridge to get some out but as there wasn’t any left he started slamming things and yelling at mum about there not being any cheese. Mum went down to her room and Michael sat down to eat his dinner a few minutes later Micahel got up and stormed down the hallway to their room where mum was. He slammed the door and started yelling at her. Mum started yelling out that Michael was hurting her and to let her go and to stop touching her, I eventually went down do their room (I had NEVER interrupted their fights before, I usually go to my room) and opened the bedroom door and screamed at Michael to let her go. He had mum by the wrists and was screaming angry words and threats right in her face.¬†He looked like a mad man and when I walked in. He let her go and told mum that she needs to get out of the house and that he’ll give her 6 hours to move out tomorrow (so Friday) after he had physically assaulted mum and told her to get us out he turned around and yelled at me right in my face to get the hell out of his way; he didn’t say it in exactly those words though. I honestly thought he was going to physically hurt me too. After had he had finished yelling at us and being physical with mum he went down and ate his dinner. Yes that’s right, after all that anger and getting physical with mum and went back to the dinner table and ate his dinner like nothing had happened, what a psycho. Who does that? Who can physically assault his wife and demand that she moves out of ‘his house’ and then go and eat dinner like nothing had happened in the past half an hour? A psychopath that’s who. After he finished dinner he went outside and got the boxes from storage and gave them to mum and told her to pack up her sh** and then he left again. Mum and I started to pack Chase’s room first, taking the most sentimental stuff like his clothes and toys and a few of his funeral programmes. After Chase’s room I went up and threw all of my clothes into boxes not taking notice of what I took and what I left. I left so many of my things behind, I literally only took my clothes. On Friday I took the day off school and mum and I moved our boxes to mum’s little investment house in the town over. The house was incredibly small with only one bedroom, no heater, no water, no gas, no firewood and no cooling; not that we needed cooling as it was the middle of winter! Mum and I had managed to move all our clothes and stuff within the 6 hours that Michael gave us to move out.

The hardest part of getting kicked out¬†was leaving Chase’s room and everything in there. Chase’s room was where I could go and cry and miss him without the judgment of Michael. Living in that little house was incredibly hard when there was 3 people living in a one bedroom house. Dusty and I slept on mattresses that were given to us by friends on the floor in the bedroom meanwhile mum slept on a mattress in the lounge room.¬†
There was no privacy at that house and no place where I could go and break down and let out all the feelings I had abut what had happened and Michael. We got through it though and after mum borrowed quite a lot of money off one of her friends we were able to get out of that tiny house and move into a normal size house where I had my own bedroom and bathroom and mum had her own bedroom and bathroom. Plus it had heating and cooling which was great! My anxiety was just starting out but it wasn’t that bad that I couldn’t go to school or leave the house. My depression also wasn’t bad either, it was¬†a year¬†after Chase had died so I was still in the numb, processing stage and hadn’t completely gotten the fact that my brother had died.

Health conditions (Gastroparesis, chronic fatigue syndrome, pelvic floor dysfunction):

My health conditions mostly started after we moved into the normal house. That’s when the extreme bloating, pain, fatigue and other yucky symptoms started to happen. It’s also when my anxiety became severe and so did my depression and I ended up leaving¬†my¬†mainstream school and enrolling into Distance Education. I’ll talk about my anxiety and depression more in part 2 of ‘What happens after’¬†but for now I’ll talk about all the stomach issues and fatigue.¬†

After I had left my school and started Distance Education I’d wake up every day looking 7 months pregnant and in a lot of pain. I would also sleep for 15 hours a day and be fatigued for the rest of the hours I was awake. I made trips to the emergency room quite a few times because of my bloating and pain and also because I would have blood in my poo (TMI I know, but that’s part of my life and this is a blog about my life so…) which isn’t normal. I would always get sent home from the hospital and told that I was fine and to take over the counter pain relief; it didn’t help with all the other symptoms, it helped with the pain a little but but that’s it. I got referred to see a gastroenterologist at the Royal Children’s Hospital and he booked me in for a colonoscopy and endoscopy. As I had thought they didn’t find anything and he told me to go home and to come back in a few months. Well, I wasn’t happy with that so I went and saw a paediatrician who told me I have chronic fatigue syndrome and associated POTS but my bowel issues and bloating was because I was overweight and that I just had to lose the weight and I’d be fine. Yeah thanks. Mum and I were relieved that we finally had an answer as to why I was so tired all the time and got exhausted walking from my bedroom to the lounge room, but as my stomach issues persisted and I still had pain, bloating and blood in my poo we went and got a referral from my GP to go see a different gastroenterologist privately. My new gastroenterologist has been great up until now as there’s not much more he can do for me unfortunately.¬†

When I went in for my first appointment he took me very seriously and listened to everything I had to say and told me that he thinks that I have Ulcerative Colitis, he put me on steroids and booked me into hospital to have another colonoscopy done and to get an MRI. Well, I went on the steroids and got the unfortunate side effects from them (extreme hunger, mood swings, moon face ect) and then went into hospital for what turned out to be a week long stay. I had to do a 3 day flush out which meant I couldn’t eat anything solid for three days and had to take a number of disgusting laxatives. If you’re reading this and you’ve had to have a colonoscopy before then you know what I mean when I say the actual flushout stuff¬†is the most disgusting thing in this world. Anyway, I did the colonoscopy and they didn’t find anything (typical) so I was taken off the steroids and then had to have an MRI done of my whole digestive system; that was super uncomfortable as I had to lay on my stomach for an hour. Once again they didn’t find anything abnormal and I was told I just have sever IBS and I was sent home and to get another follow up appointment with my gastroenterologist. We went back to him and he told me because I’m so constipated I have to do a flush out once EVERY MONTH! Nooooo¬†ūüė©ūüė∑ So I continued doing that and as nothing was improving, I was still bloated, in pain and constipated¬†he¬†told me that I needed to go get a gastric emptying study done (http://www.medicinenet.com/gastric_emptying_study/article.htm). So I went and did that and FINALLY something came back abnormal and we got some answers. It turns out I have something called Gastroparesis. This pretty much means that my stomach is a little bit paralysed and doesn’t empty food as quickly as a normal stomach does. I can’t tell you how relieved I was that I finally had some answers! So the end diagnosis¬†with my stomach is sever IBS and Gastroparesis. My gastroenterologist has put me on a medication called Motilium which has really helped; I can now eat without getting a severe stomach ache and severe nausea which is nice. I still get pain, I’m still bloated and I still get constipated but now I know why.¬†
The cause of my constipation isn’t just from my gastroparesis and IBS though, it turns out I also have Pelvic Floor Dysfunction. The problem with my pelvic floor is that it’s always tight and doesn’t relax and let go. You know when you do your kegel exercises and you can squeeze in and then relax again, well my pelvic floor doesn’t relax when I let go.¬†This¬†means that it’s hard for my poo to come out and it also means I can rarely use a tampon when I get my period. I have exercises I do but otherwise there’s not much else I can do at the moment.¬†
I’ve talked about my Chronic Fatigue before so I won’t go into that again…¬†https://depresssedmesswithanxietyandgrief.wordpress.com/2016/07/28/living-life-in-the-slooooooow-lane/

Alright peeps, this is a really long post so I’ll leave it here and I’ll upload part 2 next week. Stay safe.¬†

Maddy xoxo 

PS- Go check out a singer called Agnes Obel if you don’t know her already. She has some beautiful songs.¬†

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Body image, Chronic health condition, Depression

Living life in the slooooooow lane…

Chronic. This seems to be the word that is describing my whole life at the moment. I have a chronic medical condition, I have chronic depression, grief is chronic, my anxiety is chronic and the feeling that nothing is going to change is chronic.
We talk a lot about how teens suffer with mental illness and self-image problems and that’s great, but what about teens who suffer from chronic illnesses that can cause those mental health and self image problems? I suffer from Chronic Fatigue Syndrome (CFS) and a chronic gastrointestinal problem that we still don’t have many answers to (I’ll talk about that another time).

Before I talk about my experience with CFS, lets get down to the basics about it. CFS is the feeling of ALWAYS being fatigued, sore and the need to just keep laying down forever no matter how much sleep you get. There is a difference between feeling tired and feeling fatigued, just like there is a difference between feeling down once in a while and¬†having depression. There is no cure for CFS, just many suggestions from doctors that can include eating healthily and trying to keep your body active (this is quite hard when you feel like every bone in your body is aching and every nerve in your body is on fire and you feel like you haven’t slept for 30 days straight) They say that CFS is most common among people in the age box 40-50 and most of them are women, but I don’t care about those statistics! I want to hear about all the young women who suffer from this ‘old persons disease’ (I’m not saying that 40 is old though! ;)) There are so many more symptoms than just feeling tired and having a sore body. These can include:

  • loss of memory or concentration
  • feeling unrefreshed after a night‚Äôs sleep
  • chronic insomnia (and other sleep disorders)
  • muscle pain
  • frequent headaches
  • multijoint pain without redness or swelling
  • frequent sore throat
  • tender lymph nodes in your neck and armpits

You may also experience illness or extreme fatigue after physical or mental activities. This can last for more than 24 hours after the activity.

People are sometimes affected by CFS in cycles, with periods of feeling worse and then better again. Symptoms may sometimes even disappear completely (remission). However, it’s still possible for them to come back again later (relapse). The cycle of remission and relapse can make it difficult to manage your symptoms.

Thank you to  http://www.healthline.com/health/chronic-fatigue-syndrome#Symptoms4  for this information. 

Now back to me.¬†Every morning I get up and feel like I haven’t slept at all, my bones hurt, my toes feel like they’re being poked¬†with hot pins and needles and I have to fight the feeling to fall back into my soft, warm and comfy bed and sleep forever.

The lack of motivation from feeling so fatigued¬†all the time has negatively¬†affected my life in a great¬†way. I can’t concentrate on my school work, I can’t help around the house as much as I want to and it’s super hard to get the motivation to go somewhere nice with my mum when my anxiety is tolerable. And when I do pluck up that slither of motivation to do something, what ever I do with it uses it up in a heartbeat. It’s extremely annoying when you’re trying to sleep and your teacher from school rings asking you about your school work and you say “Well you know that when you have depression you get brain fog well, the same thing happens when you have CFS” and the she says “Yes I do, but if you keep pushing the fog clears”. That’s bulls**t! If you keep pushing the brain fog it comes back ten fold and then you just sleep because you’re exhausted from trying to push past the exhaustion and the brain fog!

Being a teenager is hard enough with out the added stress of having a chronic health condition or two and stressing about not passing school for the SECOND time round.
You know what is even harder than that though? No? Well let me give you a hint…
Try pushing yourself to go for a walk outside or go on the treadmill because you need to let go of all that extra weight that¬†you put on because you’re so depressed and anxious and you have no metabolism so you don’t burn your food off, and how can you burn your food off when you’re so tired from a chronic fatigue problem? Yeah, that’s even harder! ¬†I’m working on it though.

Dory off Finding Nemo had it right when she sang “Just keep swimming, just keep swimming” That’s what I’m trying to do every day, just keep swimming against the current that is Chronic Fatigue Syndrome.

My next post is going to be all about becoming vegan and gluten-free and if it’s helped or not. Stay tuned!

Keep safe and keep going, you’ll get there one day!

Maddy xoxo

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