Anxiety, Challenging, Chronic health condition, Chronic Pain, Death, Depression, Doctors, Exhausted, Family, Generalised Anxiety, Grief, Guilt, Menopause, rare disease, Siblings, Tired

Spending the anniversary of my brother’s death in hospital

It’s taken me a while to get this blog post up but I’m finally getting around to it. I was in hospital from the 30th of May to the 4th of June.¬†

My brother died at 12:12am on the 31st of May so in my eyes the 30th and 31st of May are both the death anniversary. 

I had been unwell for around 2 weeks before I went to hospital. The Mesenteric Panniculitis flared up after I weaned off the steroids I got put on in February when I was admitted to hospital. It got to the point where I hadn‚Äôt eaten or drank anything properly for two weeks and I was also in so much pain that I couldn‚Äôt move so I rang my gastroenterologist and he said to go to hospital straight away. Unfortunately that was on the 30th of May and my specialist didn‚Äôt want me to wait to go to hospital any longer. I got to the emergency room at 3pm and it took 7 hours to be seen by a doctor. The emergency room was full and there were no spare beds so they transferred me straight up to the Gastro Ward at midnight. I was awake at 12:12am and I was able to have a little cry but then the nurse came and I had to lock my grief down and answer all the admission questions. My mum stayed with me until I got a bed on the ward but she had to go home to get my dog and look after her. It felt horrendous to be in hospital on the same day that my brother died six years ago. I felt awful making mum sit with me in the emergency room for 7 hours and then have to go home by herself. I couldn‚Äôt do my usual ritual on his anniversary which is watch a super hero movie, light a candle, cry and go to the cemetery. I was in the hospital for five nights. I got out the day before the funeral anniversary so at least I didn’t have to spend that in hospital as well.¬†

My disease is a bloody b*tch of a thing. I spent 3 months tapering off the steroids just to have to go on them a month later. My gastroenterologist wanted to start Infliximab infusions to try and treat the MP (mesenteric Panniculitis) but my veins are so hard to find, small and deep that that treatment plan is no longer an option so I‚Äôm now going to start Humira injections so every two weeks I‚Äôll have to inject myself while staying on the immune suppressants I’m on now. I won‚Äôt be finished with the steroids until the 18th of August.¬†

The steroids also bring back a lot of painful memories because my brother was on them before he died. 

I don’t even know how to feel about everything that’s happened in the past couple of weeks. The steroids, the hospital visit, the anniversary and more sh*t that I really don’t want to talk about is so much stress for me to handle that I feel like I’m going to scream and blow. 

I got my laparoscopy at the start of May to diagnose endometriosis. They found some so I got that cut out and also got botox injected into my pelvic floor to see if that will help with my pelvic floor dysfunction and pain. So far I haven’t noticed a difference in pain and I’m also finding it harder to go to the toilet and get a complete bowel action. I decided not to do my sixth and final menopause injection because it wasn’t making a difference anyway so now I’m just on the pill and I’ll see how long I can go before I start break through bleeding and need to have a period. I am not looking forward to my first period after the laparoscopy and being in menopause for 5 months even though I did bleed all of those 5 months. So basically menopause was a big flop.¬†

The fatigue struggle is real. Steroids cause such bad insomnia that I spend more time tossing and turning than I do sleeping so I haven’t slept properly in months and my chronic fatigue is also flared up from everything. I would love to have a good nights sleep.

Anxiety and depression are going strong still, not helped by the fact that steroids can affect your mood so I’m trying really hard to keep my head above water and to keep going.¬†

Don’t have much else to say.

Keep safe,
Maddy xoxo

 

Twitter: @ChronicMaddy
Instagram: @ChronicMaddy

 

Featured Image: https://www.besthealthmag.ca/best-you/health/tired-and-gaining-weight/

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Anxiety, Body image, Challenging, Change, Chronic health condition, Chronic Pain, Death, Depression, Doctors, Emotional eating, Exhausted, Family, Generalised Anxiety, Grief, Menopause, Panic Attack, rare disease, Self confidence, Siblings, Social Anxiety, Survivors guilt, Tired

Why is life so hard?

Why is life so hard? Why do we have so many struggles? Why can’t life be easy with no struggles and just happiness? Why do we have to have bad times so we can appreciate the good times? Just once I would like things to go smoothly and to enjoy life. From the moment I wake up to the moment I finally fall asleep, it’s a struggle.

Life is pretty shit for me at the moment and that’s just facts. I need things to change and to get better because I can’t keep going on with how it is right now. My physical health drags my mental health down until I’m just this miserable, depressed, anxious in pain mess that no one would want to be around. I mean, I don’t even want to be around me sometimes!

I’ve began tapering the steroids now and I’m also on immune suppressants so hopefully they work and can stop or lessen the debilitating pain I get daily. I also saw the gynaecologist at the hospital and I am officially on the wait list for a pelvic floor Botox trial and also an exploratory laparoscopy to see if there’s any endometriosis causing my pain. I once again have another ingrown toenail so I have an appointment with the surgeon next week to get my third toe surgery. My mental health is not very good at the moment, I’m struggling with the thought of having this rare disease (Mesenteric Panniculitis also known as Sclerosing Mesenteritis) that doctors don’t really know how to treat or anything about. Yes, I am on medication for it (the steroids and immune suppressants) but it’s not a definite that it will help, it’s more of a lets give this a go and see how you respond to it kind of situation. I have a lot of anxiety surrounding my physical health so trying to deal with that is fun… not.
Steroids, what shitty but useful little things they are. The side effects from those are causing my mental health to get worse. I now have another chin that I didn’t have before, I’m extremely irritable and moody and I also now have a beard! I haven’t slept well in over a month, I have acne, I’ve gained weight and I just feel awful about myself. I can’t even look at myself in the mirror right now. The immune suppressants side effects aren’t fun at all. So far I’ve got worsened fatigue, migraines, whole body aches and basically feel like I have the flu without having the flu.
The menopause is going ok. The main problem is the hot flushes but they’re bearable so I’m ok with that.

I just want to know why life is so hard though. Why do we have to struggle and why do some people have a great life with no struggles? Why are some people poor and others overwhelmingly rich? I don’t understand why some people have such a hard life and others don’t; its not fair. I try to find at least one good thing in every day and yet lately I can’t even find one good thing. I tell myself my affirmations every day and I manifest, I connect to my spiritual side and do what I believe in and yet, things just seem to not change or they get worse! I just don’t understand it. I don’t understand the meaning of life. I feel so lost and scared and confused. I want answers and I want my life to change for the better.¬†

I feel like I’m going to cry all the time, I’m constantly full of anxiety and I basically feel like the world around me is spinning into a deep dark hole and I’m going to fall down into it. I’m only 19, I don’t want a life long rare chronic illness that may or may not shorten my lifespan. ¬†

It’s also anniversary season again so that doesn’t help things. March 8th was the 6 year anniversary of my brothers cancer diagnosis and next up is his birthday where he would have been turning 11 and then the anniversary of his death and then the funeral anniversary. All of those within the span of 12 weeks. Great.

I just want to curl into a ball under my blanket and never come out. I don’t want to face another day full of pain and anxiety and grief, I’m exhausted and over it.¬†

I feel so helpless and hopeless. 

Keep safe,
Maddy xoxo 

Twitter: @ChronicMaddy 
Instagram: @ChronicMaddy 

 

Featured Image: https://thewinninglane.com/why-is-life-so-hard/

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Anxiety, Challenging, Chronic health condition, Chronic Pain, Depression, Doctors, Exhausted, Gastroparesis, Menopause, misunderstood, Panic Attack, rare disease, Tired

Update: Menopause and physical health

So menopause is going well so far. I’ve noticed a few hot flushes and I did have some bleeding and some spotting but nothing too extreme. I’m on the hormone replacement patches now and off the pill. I got my second menopause shot today so we shall see if I get some more side effects and if I notice it more.

On the other hand, I was in the hospital for over a week two weeks ago under the care of the Gastroenterology team. I had been having lower right sided for a pain for 2 weeks and severe nausea for a week before that before it got to the point where I had to go to the hospital. My gastro specialist sent me straight to the emergency room and I was able to get a room on the gastro ward under the care of my gastroenterologist and his team. I got a CT scan which showed inflammation of the lymph nodes and thickening of my small bowel where that right sided pain was located. I hadn’t been eating or drinking (because I had such severe nausea) for 3 weeks before I went to hospital so I was put on fluids and also given some good pain relief. I found out I was allergic to morphine so that’s good. I also got an MRI which looked fine apparently. I sent off a feacal specimen to test for inflammation markers and if that come backs positive then I probably have crohn’s disease but because all my scopes I’ve had have come back normal, it’s most likely going to come back fine and rule out crohn’s disease once and for all.

The gastro team and my specialist think I might have some rare autoimmune, inflammatory disease called Mesenteric Panniculitis which is also known as Sclerosing Mesenteritis. The doctors told me that they don’t actually know much about this disease at all and that there isn’t really a way that you can diagnose it for sure so they’re going off my symptoms and also what the CT scan showed. They put me on high dose IV steroids for two days and then tapered me down to oral steroids which I am on for the next couple of months following a tapering schedule. The high dose steroids definitely helped the nausea and some of the pain. I am seeing my gastroenterologist in a weeks time to talk more about this possible diagnosis and a treatment plan. I also found out in hospital that I am severely constipated to the point of a possible bowel obstruction so I am on a very strong laxative regime every morning and night. The doctors told me that my bowels are pretty much completely paralysed right now and they don’t know when they’ll go back to working. Really hoping the paresis of my stomach hasn’t moved down to my bowels and is now causing bowel paralysis. I really really really don’t need that on top of everything.

I’m feeling scared, anxious, frustrated and sad but also trying to remain hopeful and remember that even if I do have this scary rare disease I might have some answers and find a treatment plan that works and I might be able to get some quality of life back. Right now I can barely walk without pain and I am basically on bed rest.

Understandably this possible diagnosis has had a negative affect on my mental health. My anxiety is very intense at the moment (not helped by the steroids) and my depression has also gotten worse. I’m making sure to be aware of my mental health though and talk to people and get some support.

Not sure what else to say.

Keep safe,
Maddy xoxo

Twitter: @ChronicMaddy
Instagram: @chronicmaddy

 

Featured image: http://www.booksinherhead.com/2017/12/life-update-winter-2017.html/

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Anxiety, Chronic health condition, Chronic Pain, Doctors, Exhausted, Menopause

19 and in menopause

My latest treatment plan to try and ease my abdominal pain is to put me into medically induced menopause for a couple of months to shut down my reproductive system and hormones to see if giving them a rest will reduce the pain. It is also a treatment option for endometriosis so if it does help with the pain then that will be a good indicator that endometriosis is causing all this pain. The menopause is triggered by a medication called Zoladex (Goserelin) which is given to you by an injection which releases a pellet the size of a grain of rice into your abdomen and you have to get the injection every four weeks. For the first two weeks I will continue to take my pill and then after that I will start hormone replacement therapy through a patch.

I thought I would document my journey through menopause because it’s not every day such a young person has to go through it.¬†

My gyanecologist told me that I won’t experience any side effects for the first two weeks and then after that I will start to experience symptoms that may include but is not limited to:
Hot flushes 
Sweating
Headaches
Dizziness
Mood changes
Vaginal dryness/itching 
Breast swelling and tenderness 
Bone pain
Nausea
Vomiting 
Diarrhea 
Constipation
Loss of appetite 
Sleep problems such as insomnia
Acne
Mild skin rash and itching
https://www.rxlist.com/zoladex-36-side-effects-drug-center.htm

Some of those symptoms are side effects of the injection but a lot of them are the same symptoms a lady in her 40s-50s would get if they were to go through menopause naturally.

The injection itself really really hurt for me, it was not fun at all. The injection site and around it has become a little bruised and is a little tender to the touch but going ok. The needle isn’t massive but is bigger than a needle you would use to get a blood test done.

I’m feeling pretty down at the moment. I guess I never thought that I would have to experience menopause so early in life and have to go through all those side effects. I’m trying to remember that it might take away my pain and I will get some quality of life back and to not think that my body might reject it and I’ll have a really crappy time with it. If it relieves some of the pain so I can function during the day then I will be happy.

I’ll let you know if and when I experience the side effects and how I go with the hormone replacement therapy.

Keep safe,
Maddy xoxo

Twitter: @ChronicMaddy 

 

Featured Image: https://www.pinterest.com.au/wiser1s/menopause/

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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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