Vasculitis Awareness Month

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So I wasn’t sure whether or not to post about this, I don’t want to come across as whiney, but it is vasculitis awareness month, so I am going to share my experience.

I was diagnosed with vasculitis about a year ago. My symptoms first started about 5 years ago, and escalated to the point where I was so exhausted I found getting out of bed traumatic – there is no other word for it.

You might be wondering what vasculitis is at this point – most people (indeed most doctors!) I speak to have never heard of it. Vasculitis means ‘inflammation of the blood vessels’. Inflammation is your immune system’s response to tissue that is injured or infected.

Damaged cells release chemicals that cause blood vessels to leak fluid into tissues, causing the tissue to swell. If there’s an infection, this reaction helps to isolate the germs.

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When you have vasculitis, your immune system attacks the blood vessels when there is no infection. There is no definitive reason for this response; sometimes it can be triggered by an infection, a medicine or another medical condition, but no one really knows for sure. In my case, it is thought that a nasty case of swine flu started the ball rolling.

Anyway, to put it simply, your own immune system attacks you – leading to swollen blood vessel walls and narrowed blood vessels; the blood flow to tissues and organs is reduced or blocked. The blood vessel wall can becomes weak, which can cause bleeding.

Any blood vessel in the body can become inflamed like this, from large arteries to small blood vessels. The larger the blood vessels that are affected, the more damage can be caused.

There are a number of different types of vasculitis, with different symptoms and potential complications. My symptoms have mostly been related to my Ear Nose and Throat areas (ENT); leading my consultant to diagnose me with ENT Limited ANCA associated Vasculitis. I have a lot of sinus pain, I get nose bleeds and bleeding ulcers around and inside my nose. I went deaf in one ear for a month last year. Pressure build ups in my head and it feels as if it is blocking off my ears. I frequently get tonsilitis, chect infections and infections in my oesophagus.

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I was hospitalised about 2 years ago, when I was woken up by intense pain in my abdomen – it felt as if I would rip my insides open if I tried to stand up – and I couldn’t stop being sick. A number of tests were run; they found blood in my urine and inflammatory markers in my blood but told me they were baffled as to what caused it. They prescribed antibiotics and antispasmodic pain killers and released me. This was before I was eventually referred to a rheumatologist.

Over the last 5 years I have been told that I have depression, chronic fatigue, irritable bowel syndrome, hypermobility, vitamin d deficiency, accute sinusitus… it took 3 years of pushing my doctor to run more tests before I was referred to a Rheumatologist.

My main symptom for years was exhaustion. I had no quality of life. I went from being an outgoing active person to someone who wanted to sleep and/or lie on the settee all of the time.

They now believe I have Granulomatosis with Polyangiitus (also known as Wegeners Granulomatosis) but are not 100% sure. I am in the odd situation of needing my condition to get worse before it can be diagnosed and I can start receiving the proper treatment.

Currently I am prescribed steroids to suppress my immune system and antibiotics to stop me getting infections on top of a whole load of other tablets. I swear I rattle.

I always wanted to start a family in my early to mid thirties, but this is very unlikely to happen now. My immune system would attack a foetus (miscarriages are common) and the drugs which help are extremely harmful. Friends and family keep asking when im going to have a baby – I make jokes about spending my money on shoes, but I find the whole thing very upsetting.

When it was thought I just needed a sinus operation people were really understandimg, but because I look relatively okay they don’t realise how ill I am. There are a lot of people suffering far worse than I am; I’m a member of vasculitis groups and my symptoms are on the lower end of the scale, but there are days when I literally can not get out of bed. I’ve started just saying I’m fine if people ask, it’s a lot easier.

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The steroids have really helped me manage my symptoms but have also led to me gaining a lot of weight; last year someone in the street shouted at me that I was fat. I was devasted at the time,  but I came to see that I am feeling better, and my symptoms haven’t deterierated further. There are worse things than not fitting into a certain dress size.

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Please, don’t judge strangers. You have no idea what issues people are dealing with. If you or someone you know have been affected by vasculitis please share this post and comment below.

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I’m sorry if this comes across as whiney; I would like to state that I decided to do something I have wanted to do for years, and kept putting off, and moved to North Wales. I live right near a beach, in a beautiful town, with my wonderful husband, naughty house rabbit mildred and I love my life. I love my job, have brilliant friends and family (even if I don’t see some of them very often) and have the best hobby, where I occasionally get sent free books. What more could a girl want?

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When we first moved here I couldn’t walk for more than 5 minutes without needing to sit down; now I can (and do!) walk 23km in a day. I ride my bike. I get over excited about shoes, buy too many lipsticks and read waaaay too many books. It might take me longer to get places than most people, but I will get there eventually!

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I promise my next post will be about shoes and or makeup!

Cheerio!

Stephani Xxx

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14 thoughts on “Vasculitis Awareness Month

  1. Totally awesome post. Thanks for sharing your story. Wish we had more people willing to spread Vasculitis Awareness. I hope you get an answer to what type of Vasculitis you have. It will help. I’m a Cryogloblinemia-Vasculitis patient advocate and always here to help in anyway can to spread YOUR Story.

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    1. Hey – just found this post, having recently started writing myself as a venting and educating/communicating with friends and family method. I have cryo, diagnosed this last June approx. and its escalated from nothing to very interesting in less than two years. The part about having kids struck a chord. That is the bit I don’t even let myself think about let alone talk about! Thank you anyway for being blunt about it. Best wishes all ☺

      Liked by 1 person

  2. Hi there thank you for posting.i have been trying to write mine for 2 years lol.i have churgs strauss syndrome. Again not sure what caused it maybe grief with swine flu.lost my husband June 2009
    Got swine flu in the following Jan. I also went from active bright woman to an invalid oxygen dependent.one of my friends lives in North Wales in Cwm y glo
    Beautiful place.

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    1. North Wales is the place to be! 😊 I’m sorry to hear about your loss. It’s so difficult to talk about your vasculitis journey; it’s very personal and it seems to take most people a long time to be diagnosed. Xx

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  3. Great post . You sound so positive . 💕 My daughter Abi has PAN . It’s a real bitch I can tell you . She was diagnosed at 5 and is 24 now so has learnt to live with it . Research has found she has a mutated gene which maybe why she has pan . She had a stroke at 5 and a double brain haemorrhage at 7 and had major surgery to remove a blood clot . It was a hard time and I think we’re scarred for life mentally ., but she’s a tough cookie. Thanks to amazing Drs, consultants and nurses at GOSH who saved her life . We owe them so much 😘 . She takes regular meds which keeps it in some sort of remission . (We hope 😏) Research is finding out lots so for all you vasculitis sufferers out there we live in hope for a cure, but until then keep fighting , stay positive and kick V in the ass . Xx

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    1. Thanks for the response Jackie. It sounds like you’ve had a tough time. I was really hesitant to post about this, but we really need to raise awareness and as you say get more research. I am trying to stay positive – obviously there are days when I’m a right moany cow ha ha – and keeping in touch with the forums out there for us Vasculitis sufferers. It’s an amazing community. Sending hugs and positive thoughts to your daughter xx

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  4. Oh man, I can only imagine how hard this is to deal with. But good for you for not letting it beat you up! You obviously have people who care about and love you and many things to keep you in good spirits and that’s what matters (not douche bags who say stupid shit in the street like their opinion’s actually matter)!

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    1. Sorry Kaily – I replied but it didn’t save. My family and friends are amazing, and there is such a warm supportive environment in the blogging community. I’ve found some brilliant help groups on Facebook. I think the hardest thing is that vasculitis is rare, so a lot of people have never heard of it. That’s why it’s important to share personal experiences, even if it does feel a bit strange! Xx

      Liked by 1 person

  5. Thank you for writing this! I have been having major problems the past year and a half. Between many hospitalizations and then a surgery in December, this past March I was finally diagnosed with vasculitis. I can definitely understand the feeling of no one understanding how bad you are feeling. Keep at it! We that have vasculitis have to stick together! Thank you for sharing part of your story!

    -Ashley

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  6. Hey – just found your post – I have cryo and its escalated from nothing to very interesting in less than two years. The part about having kids struck a chord. That is the bit I don’t even let myself think about let alone talk about! Thank you anyway for being blunt about it. Best wishes ☺

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