Anxiety, Challenging, Chronic health condition, Chronic Pain, Depression, Doctors, Exhausted, Menopause, rare disease

Menopause Update: I’ve got my period

So I got my 3rd injection last Wednesday (long story short, I ended up doing it myself because we can’t afford to see my gynaecologist because she charges $180 and I need to see her every 4 weeks and I couldn’t get in and see my GP) and the day later I noticed that I was bleeding so I gave my gynaecologist a call and she said that some women can get what is called “breakthrough bleeding” which really sucks because I basically have my period when everything is meant to be shut down and I’m meant to have 6 months of no periods. I’m not sure how long this bleeding is going to last for but it’s been 3 days now and I would really like it to end soon because it’s not just bleeding, I’ve also got quite bad period cramps which I don’t need on top of my regular daily pain. Otherwise, the side effects are still just the hot flushes and I do get irritated skin from the hormone patches but the irritation calms down after a couple of days.¬†

I got a date for my laparoscopy and botox so come May 2nd I will be in hospital under a general anaesthetic¬†getting my insides looked at! I’m nervous about the surgery of course and the pain afterwards especially since I have a pain condition which makes whatever pain I feel 10x worse than what it is, but I am so ready to finally find out whether or not I have endometriosis and if I do it will be cut out and hopefully I’ll have one less thing to deal with.

I’m still struggling with my mental health but I’m making sure I’m being kind to myself and not hating on myself for feeling this way and I’m making sure to look after myself as best I can. ¬†

The immune suppressants are still kicking my arse and I’ve had diarrhoea from them for the past 5 days which really sucks along with feeling like I have the flu and also such bad fatigue that walking to the toilet for my diarrhoea is a challenge ūüėČ but I’m determined to get to the dose my doctor prescribed and to get past these side effects and see if they help with the MP (Mesenteric Panniculitis) and lessen my pain. Takes 6-12 weeks to start seeing any benefits from the immune suppressants.

That’s all from me today.

Keep safe,
Maddy xoxo

Twitter: @ChronicMaddy
Instagram: @ChronicMaddy 

 

Featured Image: https://www.flare.com/career/period-days/

Advertisements
Standard
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/

Standard
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/

Standard
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/

Standard