Skip to main content
Tag

vasculitis

Morris the Mould

By HealthNo Comments

Let me introduce you to Morris the Mould:

This last week I’ve seen Max Fax about the hole in the roof of my mouth. Their immediate fix is Morris. He reminds me of a retainer brace I once had when I was in my teens.I’m thinking about getting him googly eyes and a wig.

But seriously, although currently uncomfortable he covers the hole allowing me to eat and drink without things coming out of my nose.

But it doesn’t seal the hole by sitting flat against it as I hoped. This means my ability to talk and be understood is still impaired.

They are looking to surgically fix the hole and potentially rebuild my septum in my nose in January. Providing that:

  1. The hole doesn’t get any worse in the meantime – not something I really have control over.
  2. That I remain smoke-free.
  3. That I manage to improve my blood sugar readings to reduce the risk of surgical complications. I’m going on an insulin pump soon, which should help with this.

I’m disappointed that Morris doesn’t sit tight against the roof of my mouth, essentially blocking the hole so that I can speak normally. In every conversation, I am struggling to be understood. For someone that’s always relied on verbal communication this is heartbreaking.

My mood is low and I feel like Vascuilitis is winning.

Take care,

Antony

mental-health-wisdom-banner
Share on Social Media:

Health Update: Problems With Speaking & Being Understood

By HealthNo Comments

In a month, the hole in the roof of my mouth has doubled in size. The NHS has lost my Max Fax referral and it is now affecting my ability to speak and in being understood.

It has already affected my diet and fluid intake, causing me to loose weight.

So I had no choice but to go to my local A&E Department and request another Max Fax referral. It was so fustrating the staff not understanding me when I tried to explain myself. The only way I can be understood clearly is with yes and no answers.

Vasculitis continues to get me down and I’m still waiting to start on the treatment fot it.

Blog soon,

Antony

Share on Social Media:

Treating My Vasculitis

By HealthNo Comments

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

Share on Social Media:
×