Anxiety, Body image, Challenging, Change, Chronic health condition, Chronic Pain, Depression, Doctors, Exhausted, Family, Menopause, Mesenteric Panniculitis, Panic Attack, rare disease, Social Anxiety, Tired

2019 was sh*t.

God am I glad that 2019 is over! What an awful and stressful year… Here’s my 2019 in review:

January: Had severe nausea for nearly a month. I started to get more abdominal pain than usual and pain on the lower right side of my abdomen, doctors thought it was appendicitis but it wasn’t, that leads into February.
In January I started my first round of Zoladex to be put into premature chemical menopause to see if that will help my abdominal pain and suspected endometriosis. *Spoiler alert- it didn’t.* 

February: Had an appointment with my gastroenterologist. I was still having nausea and the right sided pain was getting worse. My gastro dr told me to go straight to hospital so I did. While I was there I got a CT scan which showed enlarged lymph nodes and something else. The gastro team told me I had a very rare disease called Mesenteric Panniculitis. They said that they didn’t know much about this disease but that they would start me on high dose IV steroids. I was in hospital for about a week before getting discharged with oral steroids. It took me three months to wean off them. It was awful. 
I got my second Zoladex injection middle of Feb. I had a follow up appointment with my gastro specialist at the end of Feb and he started me on Azathioprine (Started that in March) to try and treat the Mesenteric Panniculitis. Got told to do a bowel flush out. Nooooooooo.

March: Started Azathioprine, the side effects really knocked me around. Got another Zoladex injection. My gynaecologist sent a letter to hospital to get me on the waiting list for a laparoscopy to diagnose and cut out any endometriosis they found. Also put my name on a list for a pelvic floor botox trial to see if that would help with my pelvic pain. *Spoiler alert: It didn’t. It made things worse.* 

April: For the first few weeks of April I had very severe back pain that radiated to the front. I don’t know what caused it but the pain was horrendous. By three weeks the back pain was easing. Got another Zoladex injection. 
Saw my gastro specialist and he told me to take pain killers daily for the pain instead of when absolutely needed. Taking them every day helped with the pain a bit. 

May: Start of May I got my laparoscopy and pelvic botox, also weaned off the steroids all together. The lap confirmed endometriosis and it was cut out. Got another Zoladex injection. I had a fatigue and fibromyalgia flare or what I thought was a fatigue and fibromyalgia flare. It actually turned out to be another Mesenteric Pannicultis flare.  Spent a week with the worst nausea and right sided abdomen pain. I rang my gastro dr and he told me to go back to hospital. Went to hospital and the gastro drs there put me on high dose IV steroids again for the MP flare. A week later I got discharged and had to take oral steroids for another 3 months.

June: Saw my gastro specialist. He wanted me to start Humira to try and see if that will help the MP. 

July: Nothing much happened. Still tapering steroids.

August: Started Humira. The side effects of that were pretty brutal, had to do the very painful Humira injections evert fort night. The Humira also gave me very bad depression, anxiety and suicidal thoughts. Tapered off the steroids. Mental health was through the drain. 

September: Was still on Humira, it was still affecting my mood in a bad way. September was spent feeling depressed and anxious and getting sick. Had to stop the Azathioprine immediately because I had developed neutropenia from the Azathioprine and Humira.

October: Saw an endocrinologist because I was worried that the 6 months of steroids had caused something like Cushings Disease. Luckily I don’t have it but the steroids have caused my skin to become thin and stretched causing skin problems. Saw my gastro specialist, he stopped the Humira as it wasn’t doing much to help and making me suicidal. He told me to start Methotrexate injections. Mum had a major surgery which was incredibly stressful. I had two new housemates move in. One of them has been great and I really like her but the other one I’m having a hard time liking and understanding.

November: Started Methotrexate. Wasn’t a fun experience. November was spent looking after Mum and feeling like crap from the weekly injections. The MTX has also caused mood problems. Along with a whole lot more symptoms. 

December: Continued doing my Methotrexate injections weekly while having worsened mental health problems. Had my first panic attack out at dinner in months. Anxiety and depression is so much worse. Enrolled to do year 12 online in 2020. 

I also had abdominal pain EVERY SINGLE DAY. There wasn’t a day in 2019 that I didn’t have abdominal pain. I also had awful joint pain, fatigue and feeling like crap. 2019 wasn’t a good year for me health wise (physically and mentally). I had surgery, got diagnosed with a super rare disease, looked after mum after her major surgery and was put on meds that caused a lot of problems. I am so glad that 2019 is over and I really hope 2020 is better for me.

I also said goodbye to my social worker at the end of 2019 as I felt like she couldn’t do anything to help me. The past two months have been pretty hard. I’ve struggled a lot with  being there for anyone else other than me and mum. I’ve felt drained, exhausted and burnt out. I’ve been having a hard time with my depression and anxiety, the depression has been a different depression to the one I ‘usually’ have. It’s made me extremely irritable and also felt a bit manic at times. I’ve had insomnia for months, meaning I haven’t slept properly in months. I feel like I have no extra space in my brain for anything… I feel so completely and utterly drained and lost.

Here’s to a better 2020.

Maddy.  

 

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Anxiety, Challenging, Chronic health condition, Chronic Pain, Depression, Doctors, Exhausted, Mesenteric Panniculitis, Panic Attack, rare disease, Social Anxiety, Tired

Life With A Rare Disease- Mesenteric Panniculitis

It’s hard enough having a chronic illness that doctors know about, it’s even harder when you have a chronic illness that is so rare that no body knows about or how to treat.

I have a rare disease called Mesenteric Panniculitis which is also known as Sclerosing Mesenteritis.

The definition of this disease: Mesenteric panniculitis is a rare, benign and chronic fibrosing inflammatory disease that affects the adipose tissue of the mesentery of the small intestine and colon. The specific etiology of the disease is unknown.
Source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2726466/

Here’s an article the explains it quite well: https://rarediseases.org/rare-diseases/mesenteric-panniculitis/

I go to my gastroenterologist and he ummmmms and ahhhhhs about how to treat me and what to do with my symptoms. He puts me on medications that probably won’t work and he’s right, they don’t. I don’t know what his goal is with my condition but I really hope it’s more than this. I’ve managed to stay out of a flare and out of hospital for 6 months but I still have no quality of life, I still have daily pain and fatigue, I still struggle to get up every morning and I still go to bed and wake up in pain, This is no life to live. I want more. I don’t want to have this intense and severe pain everyday, I hope my gastroenterologist can come up with something that helps. 

I would be ok if I had one illness but multiple ones and ones that cause such severe symptoms is debilitating. It wears me down like nothing else, especially the fact that one of my illnesses is so rare that only 0.6% of the worlds population may have it. Mesenteric Panniculitis can cause symptoms or be asymptomatic so you may have it not even know, unfortunately I am very symptomatic. Mesenteric Panniculitis can show on one CT scan and then the next CT scan can be clear of any evidence of this disease and yet you’re still experiencing symptoms. It’s an intricate, understudied and unknown disease affecting your whole body. It has been classified as an autoimmune disease as it is an inflammatory process but drugs that are usually used in autoimmune diseases don’t work with this disease. It’s all very complicated and stressful.

The medications that I have tried for this disease have caused sinus infections, worsened joint pain, neutropenia, insomnia, severe hot flushes and night sweats, worsened anxiety and panic attacks and severe depression. The side effects and symptoms never stop and I am so beyond sick of it.

I feel like like an outcast even more than I already did when my body was healthy, I feel so alone with this disease because I know no one else who has it. I haven’t even been able to find other people with my not rare diseases, I feel so isolated.

I’m lost also because I don’t know what to do next with my disease, if my specialist doesn’t even know how am I meant to know?

Until next time,
Maddy.

Instagram: @ChronicMaddy 

Featured image: https://www.google.com.au/url?sa=i&url=https%3A%2F%2Fwww.pinterest.ca%2Fpin%2F386113368047012455%2F&psig=AOvVaw1Np_i3Tfjp6VbKe0XS4GlJ&ust=1576556180186000&source=images&cd=vfe&ved=0CAIQjRxqFwoTCJCvvcynueYCFQAAAAAdAAAAABAK

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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’t eaten or drank anything properly for two weeks and I was also in so much pain that I couldn’t 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’t 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’t 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’m now going to start Humira injections so every two weeks I’ll have to inject myself while staying on the immune suppressants I’m on now. I won’t 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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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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