Vasculitis, Lupus & Me

Vasculitis, Lupus & Me This is my mind-space to journal about my journey with Vasculitis and Lupus

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18/08/2024

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Wednesday was my last course of Rituximab, where I have to go into hospital and get out on an infusion for 6 hours..

Where this might sound good, my body has taken a massive hit and currently feeling very unwell.

Also, as the consultants believe that my condition has started to attack other places such as my lungs and heart, I will be getting put on another type of treatment next year.

The last couple of weeks I haven’t felt like myself and have really battled, I’ve taken a step back and kept myself to me and my family.

I need this time for me, (even though it’s the 6 weeks holidays and I have my kids around me 24/7 🤣)

There’s that guilt, where you’re not wanting to be social and just want to ignore. But, a very good friend said to me when this all started Look after yourself 1st, otherwise you’ll face defeat 🫶🏻❤️🫶🏻

So to family and friends, I am still here, just quietly and chilling watching RuPauls Drag Race 🤣🫶🏻🤣

Wednesday was my last course of Rituximab, where I have to go into hospital and get out on an infusion for 6 hours..Wher...
18/08/2024

Wednesday was my last course of Rituximab, where I have to go into hospital and get out on an infusion for 6 hours..

Where this might sound good, my body has taken a massive hit and currently feeling very unwell.

Also, as the consultants believe that my condition has started to attack other places such as my lungs and heart, I will be getting put on another type of treatment next year.

The last couple of weeks I haven’t felt like myself and have really battled, I’ve taken a step back and kept myself to me and my family.

I need this time for me, (even though it’s the 6 weeks holidays and I have my kids around me 24/7 🤣)

There’s that guilt, where you’re not wanting to be social and just want to ignore. But, a very good friend said to me when this all started Look after yourself 1st, otherwise you’ll face defeat 🫶🏻❤️🫶🏻

So to family and friends, I am still here, just quietly and chilling watching RuPauls Drag Race 🤣🫶🏻🤣

05/05/2024

Pretty sure my body isn’t destined to feel ‘normal’

My daily steroid intake has been increased due to the chest & heart problems I’m having.

Which my body isn’t agreeing with and my face is having the worst flare ups 😔

I have more hospital appointments booked in, X-rays, MRI, lung function tests

Nothing seems to be levelling out where I can just get on with life.

Currently having a lot of frustration with it all, and the fatigue is so bad at the moment

Argh!!! 😡

23/02/2024

✨ Treatment Day ✨

Feels like agessss ago I had my last session.

So, today is a 6 hour session, so stocked up on snacks, a tea, the phone charger and praying I get the comfy chair again 🙏🏻

12/02/2024

So we are going through February and it’s already been crappy for me 🙈🙈

This week I have an MRI to check my lower back and leg to see what’s going on as the pain and stiffness is really starting to affect me..

Next week I have another day at the hospital for my Infusion treatment, whilst my consultant has said that my kidneys have gone back up to 90% I still got to have this infusion and another one in August.

However, I now have appointments with a specialist that deal with Vasculitis in the lungs and a rheumatologist 🙈

And I have inflammation in the lower part of my heart which I’m not going to lie is so painful and is making every day life that bit more difficult…

So seeing as I was meant to be getting better with all the meds and infusion treatment it’s spreading to other places now.

I got hospital appointments for the next 2-3 weeks so hopefully will get more answers and what has to be done

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Hope everyone had a lovely ChristmasIt felt like an odd one to me this year.. not quite sure why..January and February I...
27/12/2023

Hope everyone had a lovely Christmas

It felt like an odd one to me this year.. not quite sure why..

January and February I have hospital appointments, to find out if I have Joint Vasculitis and if it’s started to affect my lungs.

My legs (especially my right) have become very painful and hard to walk sometimes…

My next treatment is February sometime but seeing as the last dose I had, has made me feel worse I’m hoping it was just a set back and this next lot will even me back out.

But for today, I’m staying home and not leaving 😂 my PJ’s and Snoodie are my best friends today

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❤️💜 1 Year 💜❤️Today marks 1 year of when my body made a decision to ‘give up’.December last year was so hard and I becam...
08/12/2023

❤️💜 1 Year 💜❤️

Today marks 1 year of when my body made a decision to ‘give up’.

December last year was so hard and I became so unwell that it ruined Christmas for me…

It be a month till I had my confirmed diagnosis of Vasculitis and Lupus.

I’ve already had a couple of moments of tears this morning just thinking how hard it was and what it did to me.

It has been a really hard year and whilst things are controlled in one area it’s starting to take over other areas of me now.

I just think of the first few 6-7 months and how much my family and friends were there and helped me!

I’m so grateful to the them ❤️💜❤️

So, today whilst preparing for our Disney Trip, will no doubt have emotional teary moments and times to reflect.

❤️💜❤️

11/11/2023

I have been a bit quiet on my page as since my last lot of treatment in September I haven’t felt great.

Also we have a lot going on as we are heading to Disneyland in 31 Days!!

I am so nervous about going due to the fact that if my chest is playing up, walking is going to be really difficult.

I have to go back to the doctors as well to have more bloods done, and also closer to the time get an all clear letter for me to fly 😣

As well as I have an appointment on the 6th December to see Respiratory!

03/10/2023

Having been awake since 3am, thinking my next consultant appointment which is on the 9th of this month - I need to get my lungs checked over… I can’t be waiting around until December to be seen.

Since my treatment on the 11th September my chest/lungs have suffered, I ended up with a severe chest infection which saw me on high dosage antibiotics for 10 days - whilst dealing with pleurisy again!

I went to bed last night and everytime I was breathing in I was getting an awful, sharp stabbing pain in my right lung.

Been awake since 3am, coughing and being in absolute agony 😭

But, ‘Mum’ role must kick in and I need to be getting my kiddies up soon ready for school.

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27/09/2023

Lupus will attack anyone

What Nick Cannon is talking about here is when he became unwell and got told he had Lupus and how it changed him as a person.

It’s so relatable what he is saying, and some days it’s so hard to deal with
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2 Days after Treatment...It’s our daughter’s 6th birthday today!And this is me right now taking a moment whilst the hous...
13/09/2023

2 Days after Treatment...

It’s our daughter’s 6th birthday today!

And this is me right now taking a moment whilst the house is empty.. taken my hair out and living my Diana Ross/Hagrid fantasy 😂😂

My face has become very red again, my chest is rather painful and the body is hurting! So the drug is definitely kicking in!

So today will be a day of celebrations at home and having friends and family round to celebrate with us and give our daughter the best birthday!

That’s Treatment  #3 done!Thank you so much to Kelly, who drove me over and had a cuppa ☕️ and snacks ready and also sat...
11/09/2023

That’s Treatment #3 done!

Thank you so much to Kelly, who drove me over and had a cuppa ☕️ and snacks ready and also sat with me!

Here’s hoping my body will start to feel better!

Apparently hair thinning/loss is expected of the is Rituximab but got to contact consultant anyway!

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