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, Challenging, Chronic health condition, Chronic Pain, Depression, Doctors, Exhausted, Gastroparesis, Generalised Anxiety, Panic Attack, Social Anxiety, Tired

I’m so beyond exhausted and over it

It’s been five years of pain, tests, hospital visits, being told it’s all in my head, countless doctors, doctors not knowing what they’re doing and doctors not knowing what else to do for me. After five years I thought that I would be better and all my conditions would be in remission and yet I’m actually just getting worse and not better. In the past six months my health has dramatically declined and it’s scary.

My itchy scalp that I’ve had for the past two years is worse than ever, It’s literally itchy 24/7 and I can’t do anything about it, neither can two dermatologists who couldn’t find anything visually wrong with it. I’ve been suicidal because of how itchy it is, it keeps me up at night and I’ve scratched so much that I’ve damaged my scalp and my hair is falling out. I’ve also been feeling suicidal lately because of how tired I am. I’m tired of the doctors and doing all the things that they tell me to do and not seeing results. I’m tired of the medication and I’m tired of the pain. I can’t stand the pain anymore. I can’t stand not knowing what’s wrong with me and I’m exhausted from being tired all the time. I thought that in five years the chronic fatigue syndrome would’ve gone into remission and I’d be able to do more in my life, but nope, I’m just as tired- if not worse- than I was five years ago.

There’s only so much one person can take before they give up and to be honest, I’ve given up a little bit. I am still alive though and I am still looking after myself and that’s what matters right now. I want to find out what’s wrong with me. I want to find out what’s causing me so much pain and this itchy head and I want to get a treatment plan that works. I have not gone through five years of hell and pain to end up not knowing what’s wrong with me. I would just like to get some relief from the pain and the itchy head though, that would be really nice. I would also like to wake up in the morning and not be so tired that even though I have to pee really badly I can’t get myself out of bed until I’ve nearly wet myself. 

As of now I am taking my pain meds to help try and manage the pain, I wear cotton gloves to bed so I don’t scratch my head at night, I’m on antibiotics to see if that helps with my bloating and to see if I have SIBO and I’m seeing my pelvic floor physio once a month to work on the pelvic floor dysfunction and the bowel incontinence. 

I don’t think I’ve ever really talked about the bowel incontinence and that’s because I’m embarrassed about it. It’s not fun to be out in public and then all of a sudden have to run to the toilet so you don’t sh*t your pants and be so worried about the fact that you are so close to pooping yourself in public. Just the other day I was out and luckily enough there was a hospital right next to me so I could speed walk and try to find a bathroom before I had an accident. The treatment that I’m doing for it is also embarrassing, it’s called rectal balloon training and it sucks. 

The itchy head feels like ants crawling on my scalp combined with a burning feeling and it won’t stop. Like I said before it keeps me from sleeping and it’s itchy 24/7. I’ve tried so many shampoos and lotions and meds and nothing will help it. It’s making me suicidal and is the main thing apart from my abdo/bowel pain that is getting me so down. I’ve got a referral to a neurologist now to see if they can help me seeing as how no one else can figure out what’s making it so itchy.

My gastroenterologist said that the CT scan and ultrasound I got done might have showed crohns disease but it might also be nothing so he wants me to start steroids after I see the gynaecologist and see if the steroids help the pain. I’m seeing the gynaecologist in October and I’m going to ask her about endometriosis as a possible cause for all my pain and womanly problems. 

All in all, I’m not feeling too great and having a really hard time. I’d like the pain, fatigue and itchy head to fu*k off. I’m keeping safe though and talking to people and have a support team. I’ll be ok, just right now I’m overwhelmed and reached my limit. My anxiety has also been really bad so that sucks. 

Keep safe, 
Maddy xoxo 

Twitter: @ChronicMaddy <— 

Featured image: https://me.me/i/shes-strong-but-shes-exhausted-r-h-sin-2745442

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