The darker side of lupus #9

[amandalilley]

Lets talk anger.......

Why, because we have all felt it. Consultants, dr', friends, family, aquaintances, the general public and ourselves, have all, at sometime, caused a surge of the red mist to rear its ugly head.

It doesnt even have to be part of our lupus - it is a basic emotion, hotwired into our biological make up.

But heres the thing - anger is so much more powerful when an injustice feels as though its included within that anger - and that, my wonderful, well balanced friends, is where my dark side really hit the roof today.

Let me explain......

I enlightened you all in a previous post, about the new consultant who had not read my notes, did not know my fistula had stopped and did not have a list of my meds or my careplan, both of which I left him with after our first encounter, enabling him to be up to date.

2nd appointment with said consultant, giving a chance to establish trust, start again and move forward with a new consultant/patient relationship, as any well adjusted, friendly, good patient would.....

NO CHANCE - WITHIN 5 MINS OF BEING IN THE CONSULTING ROOM THE CONSULTANT ADMITTED TO......

not having my notes in the room

Loosing my up to date med list

Loosing my careplan

Not knowing I was now resistant to 2 lots of antibiotics following 6 months of both kidney and urine infections, despite being made aware by my gp.

Forgetting to send me the lettter of our previous meeting 8 weeks ago and telling me and showing me it was still on his computer!!!!!!!!!!!!!

NOW I AM P*****..........

Then 'said' consultant proceeded to inform me that my bloods had 'no lupus flare and kidney function, for me, was doing well and didnt I look and feel better because of this'

NOW I WAS REALLY P*****..........

LISTEN UP PROFESSIONALS - JUST BECAUSE OUR LUPUS MAY NOT BE FLARING, AT THAT PARTICULAR MOMENT, IT DOES NOT MEAN WE ARE FREE FROM OUR SYMPTOMS - IT JUST MEANS YOU CANT SEE THEM WITH YOUR EYES OR IN OUR BLOODS.

EVERY DAY..... wether in a flare or not.......I sufffer many daily symptoms, as do many, many lupus patients.

They are just ten times worse when in a flare and sometimes, even when you have taken bloods that show no flare, we can be in one ten minutes later, have an infection the folllowing day, fall into the lupus fog or be so exhausted we have to spend the day/s in bed....... you just do not see what we experience every minute of every day.........you just treat what you see, we know you dont have time, dont really want to ask and dont sometimes know and to cap it all - lupus and lupus patients DO NOT FIT YOUR TICK BOXES....

This is a list of symtoms I suffer every day regardless of a flare - ask any lupus patient, they can add, take away and probably list many more - how many, as professionals of lupus/Rhumatology/renal etc were you aware that we suffer from on a daily basis? are you actually aware that we are in as much pain and discomfort when not in a flare?

Headaches, nausea, sickness, diarrhoea, Costrochronditis, swollen neck and face, joint pain, sore eyes, bloating, loss of smell and taste, teeth falling out, hair falling out, neck pain, light sensitivity, mood swings, exhaustion, pins and needles, numbness, clawed hands, loss of balance, vertigo, painful joints....... i could go on........

I cant speak for other sufferers and its not my place to do so, but after 20 years of this illness, I have seen little improvement, bar medication, in the attitude, help available, advice given, listening skills or acceptance that we as patients may be quite knowledgeable. THIS IS NOT ACCEPTABLE.

Mention Cancer and people say, 'I am so sorry'

Mention Lupus and people still ask 'what is lupus' -

well, let me be blunt - lupus can still kill people! It has tried with me 4 times over the past 6 years alone...............

When was the last time you saw a collection tin for lupus?

We are just as important as all the other diseases out there, we just seem to have been left in limbo, left as a blanket stretching over many other illnessess........now thats the dark side of lupus.

Well, at least the writing of this post has released the anger lol - i am sorry to have vented on you lovely people, but as a teetotaler the gin was out of the question.........and my one and only, half working kidney would probably object and give me another infection....lol

A funny side of lupus will follow soon... promise. Xxxxxx

[Shadows-walker]

Your insight into my life experience is amazing, you sure your not me !

Gentle hugs and thank you ! It's not good that we share so much but it's nice to know you know what it feels like to be me , just wish you didn't have my pain ,

Hugss and smiles

Chris X

[misty14]

Hi amandalilley

Another great post from you highlighting the darker side of this illness. I think you need a new Rheumy who will do his job properly!. The one your seeing gives no confidence whatsoever and should be treating you so differently!.

You can ask your GP for a second opinion and referral. Good luck. X

[Debra60]

love your post! :o) :o) x

[Penelope-Mary]

Oh I ate and drank every word dear Amanda, you are so right in so many ways ( well in all ways) and thank you for your clear minded articulation .

What to say....it is a continual uphill battle. I too see red when asked to defend my inability to stand tall, walk unaided and be 'healthy'. You look good. Oh please.

Anyway we have all been there.

I was watching a local (Australian ) comedy series, the joke....a charity, well how about aid for starving dogs in India..or patchworking for lupus- I WAS FURIOUS still am 😡.

I'm done 🤗

Thanks Amanda 🌼

[JL1w]

I loved reading your post I could have written it myself as I suffer with all those symptoms you talk about - sorry you feeling like this ! But I can totally relate with what you say ,when I was diagnosed with lupus I got that response you said ,"oh that's awful what is lupus ? " and what I felt was very little understanding or sympathy then within 2 months after the lupus diagnosis I was also diagnosed with myeloma cancer and the friend /family reaction was totally different , fear and total care for me ! I wouldn't care it is my lupus / sjorgens that makes me feel quite disabled on a daily basis and overwhelms my life with pain and discomfort !i wish people would understand lupus and it was recognised as a serious illness !! Wishing you all good health X

[amandalilley in reply to JL1w]

Thank you for yor reply, I am honoured you felt my post was helpful and so proud of you for highlighting the different responses to both diagnosis.

May I wish you love, hugs and hands of help from the universe to help you through some difficult days to come.

👋👋👋💖

[Andrewc]

I know exactly how you feel. Had a major run in with one if my consultants when I was in hospital for 3weeks in January. He was the most arrogant person I have ever met and made decisions over my treatment that could have had serious repercussions if not for the saving grace of another consultant who's praises I can not sing high enough he is the best I have ever had.

[amandalilley in reply to Andrewc]

Thats great please..... where and what name....is he open for new patients lol. X

[Andrewc in reply to amandalilley]

Lol was at the royal Liverpool hospital. I take it your asking over the good Dr he is called Godfrey Smith and unfortunately he has decided to leave after 23 years due to having enough of the politics of the place, I sympathise with him. Even though he has left he has said to me to let him know when I get my appointment for heart surgery and he will come along with me and my wife. When I was in hospital he gave me his mobile number when I was discharged and told me if I got any problems or unusual symptoms as was on high doses of antibiotics I was to call him any time night day or Weekend and he would advise what I should do. Such a shame he has left the hospital has made a huge mistake letting him go.

[amandalilley in reply to Andrewc]

Oh what a shame, the good ones are so few.

I do hope that your next consultant is as good.

Much love and sending hugs. X

[diane1428]

No the feeling. Been posting abt doctors receptionists. Definitely dragons. But after a nasty bout of food poisoning had to have a blood test as I couldn't take warfarin for four days. Felt dreadful but receptionists would not let me have a blood test till 3april. In desperation went to see doc. Explained just needed blood test so I could get right the warfarin. They insisted I needed to go to hospital for the day to have... Yep... Blood tests.

Wouldn't listen to me after all it's only me that has sle and aps after all. Eventually I took myself to the haematology dept. they took my blood and my inr was way too high. Regulated the warfarin that night. Two days later had to spend the day in hospital. I was feeling much better.

The doc didn't know I had lupus or aps. Didn't know what mess I was on and didn't even know I had already regulated the warfarin. He definitely didn't read my accompanying letter.

At end of a waste of a day I was told (after telling him of my condition) the problem is I need blood tests as and when I need him. Could have given him a black eye but felt too tired and can't make a fist at mo.

There must be something we can all do. Let's collectively put our thinking caps on and really Raise Awareness

Love to you all on this bright n sunny day here in england

[Josieswolf]

I do understand what you're saying. I had to send angry letter to my rheumy. We do have a good relationship now. I have lost count though of doctors who look blank when i say lupus. One a and e doctor wanted to give me 2 ibuprofen for serositis attack until senior stepped in with iv morphine. Then they avoid you because they don't know what to do.

Yeah it be really nice just once to see some collection tin somewhere for lupus. Just some understanding of what we go through flaring or not. I commited the cardinal sin of cutting the dead heads of a few plants in the garden on sunday have been in bed since. I have two friends who have had cancer one of them recurring three times. She hast her bowels kidneys and uterus and she leads a very full life. There we are look well, dibeleived and all living our own private hell. Sorry needed to vent too. Lots of hugs to you and everyone. Xx

[Josieswolf]

I meant to say lost her bowels,kidneys and uterus. Xx

[LUPUSadmin]

Hi Amandalilley,

I'm sorry that you've been feeling frustrated with your consultant. It might be worth speaking to PALS (Patient Advice and Liaison Service). PALS can help you to get the most out of the NHS, can help you to resolve any concerns you have and can give you information about the NHS complaints procedure.

You can find out more about PALS and how to contact your nearest office here: nhs.uk/chq/pages/1082.aspx?...

George

[amandalilley]

Thank you George.

I have passed my concerns to PALS and through relevant complaints procedure and to be honest have not been i pressed by their responses.

In fact the one very important one I sent with regards to being told 'if I believed in god I would have no pain' by a night staff nurse, took over 3 months to get any response and the person in question was still in situ! A letter was accompanied by a one line apology....... as a person with no religion, it was insulting, hurtful and insensitive and put into context of hospital policy was unbelievable.

So I am afraid that my faith in the system has been rocked to the core over 20 years, the difference now, I am no longer afraid to speak out and do every time I am ignored, belittled or humiliated just because I have a complicated disease that very few people in the profession understand.

It is usually a few individuals that create problems and I try to be as constructive as possible without stooping to their level, however, the system leaves a lot to be desired when it comes to the treatment, understanding and compassion of lupus sufferers, you only have to read the posts here to see that and unless we stand up and be counted we will always be 2nd to cancer and other diseases that receive much more publicity, funding, understanding, traing of drs and general acceptance.

As I am writing this an advert for cancer has appeared on the tv - i dont ever remember seeing an advert for lupus..........

I will, of course continue to stand I for myself and others that have this awful disease and hope that others will too.

Thank you again for you reply and advice it is appriciated.

[Britannica55]

My daughter has lupus and suffers as you do but gets little or no sympathy.I so wish people would realise how awful this terrible disease is.Even in hospital a lot of staff don't seem to understand. Wishing you all well x