Challenging, Chronic Pain, Depression, Doctors, Exhausted, misunderstood, Tired

They just don’t get it!

Doctors. You love them and you hate them but most of the time they just don’t understand. They don’t understand how hard it must be to be in chronic pain and to deal with that every day, they don’t understand that when you’ve been in so much pain and so sick for so long  any diagnosis is a good diagnosis. They don’t understand that when you’re in pain every single day and you don’t know why, getting a diagnosis can be life changing in a good way. So when they tell you that your test results are negative with a big smile on their face you nod and say that’s great but on the inside you’re crying and screaming just wishing that they were positive and that you had some answers because when you have answers, you can start a treatment plan and find what works and what doesn’t. When you go to a new doctor and you have to tell them your medical history and you tell them how much pain you’re in they just don’t understand what that means, they ummm and ahhh and write things down.

I had my gynaecology appointment yesterday and she was good as far as specialists go but I still felt like I wasn’t being heard. She told me that I have chronic pain and that she thinks all my pain in my abdomen is from my nerves. She thinks that she isn’t going to find any endometriosis when I can get in and get a laparoscopy which will be in 6 months to a year because the public waiting list is so long. Privately it will cost around $5,000 and because my body is complex I would have to stay in hospital a night to two after the procedure so there’s another one to two thousand. She’s put me on Lyrica which I REALLY don’t want to be on because I know how nasty it is, but I don’t really have a choice. I have to try that for 6 weeks (if I don’t get any horrible side effects and have to stop it sooner) and if that doesn’t work go back to her and talk about medically induced menopause. She’s going to put me on the wait list for surgery in the mean time. So for now I’m still stuck with pain and I probably won’t get any more answers for a year which doesn’t make me feel any better. I didn’t expect to go in there and come back with a cure, but I did expect her to take my level of pain more seriously and do more than put me on a medication which I told her I’m not very fond of and really don’t want to go on. Since I’m now taking Lyrica I can’t take the steroids my gastroenterologist wants me to go on because then I won’t know which is helping if I do start to feel better and be in less pain.

I just want some answers.

Keep safe,
Maddy xoxo

Twitter: @ChronicMaddy 

 

Featured image: https://www.moceanic.com/2018/when-donors-complain/pop-art-frustrated-woman-123rf-2/

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Anxiety, Body image, Challenging, Chronic health condition, Depression, Doctors, Exhausted, Family, Friends, Gastroparesis, Panic Attack, Self confidence, Social Anxiety, Tired

I’m struggling and I’m scared…

I’m not really sure what to write in this post because I’m not really sure how I’m feeling about everything… I think the main struggles I’m going through at the moment is my health and trying to create a life around my health. So lets talk about my health.

I got three blood tests done and they all came back positive for Systemic Scleroderma (I’ll just call it scleroderma). Scleroderma is an autoimmune disease that changes the amount of collagen that you make; it gives you too much collagen causing very painful skin, muscle and joint problems and it can also affect your organs causing stuff like kidney failure and lung disease. There are many different types of scleroderma and the one I tested positive for is the systemic one which means it attacks my organs along with my skin (side note: I could have another type of systemic scleroderma that doesn’t affect your skin at all but I’m not sure yet if I even have it). I have an appointment with a rheumatologist in October to get checked out more and to get more tests done to see if I for sure have it, so right now it’s a waiting game. I’ve also been having so much more abdomen/bowel/pelvic pain lately and I can’t find a cause for it. I got a colonoscopy,  gastroscopy and a CT scan done and all of those tests came back normal so I have no idea what’s causing the daily double-over pain I’m getting. I honestly can’t tell you how bad the pain is and how hard it is to handle on a daily basis. I’m also booked in to see a gynaecologist in October because I’m starting to wonder if maybe all my pain isn’t actually in my bowel but on the outside with something like endometriosis. I’ve always had severely painful and heavy periods but I’ve always swept that under the rug but maybe it’s time I start looking out of the box because I can’t handle to be in so much pain anymore. I’m also not sleeping well and if I don’t have something to help me sleep then I will literally not sleep all night. My psychiatrist gave me two medications to try and one of them I was allergic to and the other one doesn’t help me at all so once to twice a week I’m taking seroquel so I can finally get some sleep because me and not sleeping don’t mix well together. 

In my title I also wrote that I was scared and it’s true, I am scared. I’m scared because I don’t know what’s wrong with me and what’s causing all this pain and why my bloods are abnormal. I’m scared because I don’t know how to help the pain and because I have no idea what’s going to happen to me. I don’t know how to create a future when I don’t know what’s wrong with me and also when I’m so tired and in so much pain. How am I meant to do anything when I have a hard time getting off the couch? I just don’t know what to do. I do know that I want to finish VCE through online schooling again but then all the ‘buts’ come and I psych myself out of calling the person I need to call. A major thing a part from the pain and fatigue that’s stopping me from calling them is the fact that my brain fog is so bad lately that I’m having a really hard time reading and putting a sentence together. I’ll proof-read this post but I’m sure you’ll find so many mistakes reading it and that’s because I just don’t see them. And also, what if I completely suck and can’t even pass year 11 and 12, I mean I passed year 10 by a millimetre.  

I have other stuff going on that I don’t want to talk about but it’s stressing me out and causing a major panic attack. 

I’m just having a really hard time with where my health is at and trying to remember and remind myself that I can still have a future even if I do have scleroderma or endometriosis and that I can make a life around the pain. I need to work on reminding myself that I am worthy of a happy and fulfilled life and not a life full of pain and loneliness because that’s another thing, I am so freaking lonely. I have my mum and I know that I’m lucky because some people don’t even have one person and she’s my best friend who I can go to with anything but sometime it’s not enough… I need someone else to hang out with me and to be my friend. I need some more support. 

I also saw a dietician the other month and a part from telling me that she was concerned about my pain and that I needed to get that checked out, she said that she couldn’t do anything to help me to lose weight because I’m eating right and doing what I can but it’s really hard with my stomach and it’s condition because it doesn’t digest properly, I have no metabolism and what I can eat isn’t that great. I can have some veggies and salad but too many and I feel so sick and have such a bad stomach ache. It was hard to hear that she couldn’t do anything to help me lose weight because that’s still a big problem I’m trying to deal with. 

I don’t think there’s anything else I want to talk about…. I just thought I’d sit down and try to write out some of my feelings and worries… 

Keep safe,
Maddy xoxo 

 

Featured image: https://www.channelweb.co.uk/crn-uk/news/3026573/why-are-outsourcers-like-capita-and-bt-struggling

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