Health

Anger & Depression – My Current Stages of Grief

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Loss leads to a grieving process. I feel like my vasculitis diagnosis and accompanying symptoms have led to a loss of a quality of life, as well as a shorter life expectancy than I had expected. So I’m currently grieving.

I’ve done the denial and shock stages of grief, but am currently struggling with the anger and depression stages.

Anger is a weird one. I’m not angry at a person or God, but I’m angry with the whole way this universe works. It feels unfair and even though I know logically that life isn’t always fair, I’m still angry about it. Anger isn’t something I experience often and it is one of those feelings that for me is uncomfortable. I’m rarely ever angry so my resilience to tolerating this emotion is quite low, as are my coping strategies for dealing with it.

Depression on the other hand is bunch of feelings that I’m far too familiar with due to having bipolar. Hopelessness, a lack of joy, physical/mental exhaustion, I could go on, but I won’t.

These feelings of anger and depression are a normal part of the grieving process. I know that. But it doesn’t make them any easier to deal with. I’m struggling to cope, so I’ve referred myself for some counselling. I know there’s really no solution to these feelings, they are not a problem or a puzzle to be solved, they have to be experienced, in order to move on to the acceptance stage.

Right now I’m focusing on being patient and kind to everyone – including myself, so that I don’t inflict any harm on anyone because of how I am feeling.

I am acutely aware that my last few blog posts haven’t been positive. But I suppose that’s to be expected when you’re grieving.

Write soon,

Antony

Support

I recognise that people visiting this page/post might want to know where they can get support.
If you require support around your mental health, addiction or physical health, see this Support page here.

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Health Update: A Hole in the Roof of my Mouth (Hard Palate) caused by Vasculitis

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My Vasculitis is rapidly getting worse. I now have a hole in the roof of my mouth (hard palate) up through to my nose. It is causing me difficulties with drinking, fluids coming out my nose.

This Vasculitis is really doing a number on my nose, mouth and possibly eyes. Not great news. Feeling down about it.

Best Wishes,

Antony x-x-x

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Treating My Vasculitis

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Last week I was feeling a bit lost. My blood tests had come back positive for vasculitis. My ENT Consultant stated she had referred me to a vasculitis centre and started me on some steroids. She said that I wouldn’t need to be seen again by her, unless the Vasculitis Specialist requested it.

But instead of an appointment to see the Vasculitis Specialist, I got a letter through for another ENT appointment in a month’s time. Having checked this week, apparently the appointment is with a Vasculitis Specialist.

I didn’t know how to navigate the world of vasculitis. I didn’t really know much about what the diagnosis meant. I needed help. So I telephoned the Vasculitis UK’s helpline.

The volunteer who answered the phone was fantastic. But she didn’t have good news. The steroids just mask the symptoms and are not the treatment. The treatment is chemotherapy medications and immunosuppressant medications, with the aim of getting the vasculitis in remission (under control). I could be on this treatment for some time. As once the disease is under control, it will be about maintenance (keeping it under control).

The volunteer gave me some excellent advice around my local specialist treatment centre, which I have followed. Unfortunately, the centre hasn’t yet received a referral for me so I am following this up.

I have no idea what this means for me and my life at the moment. Right now, I’m just having to take it day by day.

Take Care,

Antony

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Vasculitis Facts

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Vasculitis Facts

Vasculitis is a rare inflammatory disease which affects about 2-3000 new people each year in the UK.


Vasculitis means inflammation of the blood vessels. Any vessels in any part of the body can be affected.

Vasculitis UK – The Facts, last accessed: 07/05/24.

Vasculitis is an aggressive autoimmune disease where your white blood cells attack the small veins and arteries in a person’s eyes, nose, lungs and kidneys. The exact cause is unknown but a person is at higher risk of getting vasculitis if they have other autoimmune diseases such as diabetes.

There are different types of vasculitis including:

  • Granulomatosis with Polyangiitis (GPA), previously known as Wegener’s Granulomatosis,
  • Microscopic polyangiitis (MPA)
  • Eosinophilic Granulomatosis with Polyangiitis (EGPA), previously known as Churg-Strauss syndrome.

My ENT Consultant has referred me to a Vasculitis Specialist urgently as she is 99% sure that this is what I’ve got. I remember reading somewhere online that with one type of vasculitis the average life expectancy is 20 years from diagnosis. I’m 37 years old, which would mean my average life expectancy would be 57 years old if I have that type. Unfortunately I don’t know what type of vasculitis Doctors think I’ve got and the diagnosis isn’t yet confirmed.

Hope to have answers soon,

Antony

Support

I recognise that people visiting this page/post might want to know where they can get support.
If you require support around your mental health, addiction or physical health, see this Support page here.

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