Being accused of being racist!!!!!!!!!

Getting it in the neck!

Oh my am I in deep trouble by some members of the pah society.  Why, well I asked somebody who wished to join our group the question of why they did. their reasons etc.   I sent her the FIRST standard message that goes something like this.  Hi, I note your request to join our closed ph group.  May I pease ask your reasons i.e. do you or a family member suffer from ph.  Please respond so I can process your request as soon as possible.  The new ones on here will KNOW this is the message I FIRST send. We need to know do they have ph or have a family member suffering with it before we allow them to join.  We need to keep the group closed to protect our members.  Many ask to join the group just to up their friends numbers etc.  Once I receive a reply from my message where they explain their prognosis I then add them to the group, generally with a note to our members asking them to welcome so and so to the group and I am sure they will find much needed support. On receiving no reply to my first message by this girl  I checked with her timeline and saw that her cousin suffers from a terrible condition called IH.  Another rare illness but nothing at all like ours .  I saw nothing to suggest ph so I couldn't see how we could offer support.  I then sent another very short message, remember she had received  the longer first message.  In the SECOND message I said I felt we were not the group for her {remember I had seen her timeline and the terrible condition her cousin has} though I asked again if she had ph.  I was awaiting her response when  I opened my Facebook page this morning to be met with her shocking post, all lies and all saying I had felt by LOOKING at her that she did not have ph.  Well we all know we can't tell by looking that we have ph, such rubbish.  All she had to do was reply to my FIRST message and say yes she had ph or words to that effect. Had she responded in that way I would have added her.  I did NOT say she couldn't become a member if she truly had ph.  I was waiting for a response  to my private message and what a response I got. She chose not to respond to my message privately but to go and post publicly a damming post about me, all lies  I hasten to add.

I was shocked on opening up my Facebook yesterday morning to see a very vitriolic abusive message from this girl saying I had refused her because I felt she did not LOOK  like she had ph. She didn't tell the full story , and I certainly had NOT refused her, I was just waiting for her to answer my question  do you have ph?  Her message about me was shocking and so untrue.  It went like this.

Carole Ayrton doesn't feel I belong here...... She says By looking at me she doesn't feel I have PAH therefore this isn't the group for me ..... like wtf???????   Question???????  How exactly does one FEEL that someone else does not have a life threatening illness and therefore is not qualified to join a Facebook group?????  Last time i checked people were not diagnosed off feelings but actual tests that are done in a lab of some sort|  Why the HELL would I request to join this group if I myself didn't have this or someone close to me wasn't suffering from this?  Your response to my request is disgusting and absolutely offending!!!!!!

Smells like racism if u ask me!!!!!!!!

She also showed my SECOND but NOT MY FIRST message to her which she had failed to respond to.

We know just how badly we need support and it may well have been that she had been too ill to respond to my first message, hence my checking of her timeline to see if I could see anything to suggest PH so I could expedite her request but on her timeline I saw nothing to suggest that she had ph BUT I did see that that her cousin has IH, nothing we could relate to at all.  How can we support an illness we know nothing about.    Why did she close her message by saying I was racist just because I asked her the question again did she have ph and that I felt this was not the group for her.  I never said she is racist against me, I have NEVER said anyone was racist to me if I did not get the response that I wished for. She wrote in the post that her cousin has IH and she herself was being tested for it.  In other words she admitted herself she doesn't have ph so quite why I then received hate mail from other ph sufferers I will never know.

Now of course I hope she finds a site that helps and supports her but clearly we can't offer her support for an illness we know nothing about.  Her meds will be nothing like ours, I checked the treatment side of her disease.  Now am I wrong to say I felt this wasn't the site for her.  Being a co admin of the ph group takes time and dedication.  We want to keep our members safe from others who wish to use our site for different means.  I know she wasn't doing this, she did need support as her cousin truly has a rare illness but all I wanted to do was steer her towards the group she needs.  Was there any reason at all to be so offensive towards me. I feel she was taking her anger out on me.

What shocked and hurt me more were the remarks of other ph patients who called me shameful, that it was bullshit and disgusting etc.   One said I needed to apologise to Nicole, why would I.  I had done NOTHING wrong, she was just so awful.  She left Facebook of her own accord.  I feel that she left because she knew she had been found out to be a liar, her timeline said it all. For those that sent me hateful private messages and for those that said it was shameful about the way I treated her I hope that you too took the time out to do your research, as I had done very carefully before I sent her the second message.  I have noticed that I have not seen one apology from these people, though all I have done is try to protect them.  I did note though that one very lovely person DID check her timeline and saw what I saw, she was headed for the wrong group.  I saw another message saying that both sides needed to be looked at this picture, as indeed it did, thank you so much for stating these facts.

For those that said she was in the wrong and for those that have offered me support I thank you for this, it means a lot.  I spent over an hour crying and my anger too was swelling at the injustice of it all. It therefore was so lovely to see all the messages from you, very kind and very well received.

The site is called Pulmonary Arterial Hypertension not IH  I am always happy to try to steer people who try to join but who don't have ph to the correct site.  Anyway it is all done and all over with now but please may I ask members when or indeed if they ever see such a post as this remember to do your homework first, as I did, by checking out everything we can about the person BEFORE hate mail is sent to any administrator of any group.  It takes time out of our lives keeping the group safe from people who shouldn't be here.  We don't just click a button and all done.  We have to send messages, research their timeline, in some cases such as this check treatments and meds to see if they are on the same regime as we are.  We don't want another thread such as the last one.

Let's try to keep our page safe and nice and supportive to all members.  We suffer a terrible disease and stress is so bad for us.  Please lets all try to not judge each other too quickly.  In the past when I was a raw member of the group I made mistakes such as this and hope never to do so again. I know that in the main this is a fabulous group, begun by our so very lovely Anthony Roe who we have sadly lost.  Lets keep it a clean and nice page with certainly no talk of racism on here.  That remark is so offensive.  We are all the same under our skin and  we are all varieties and shades of, some white, some black, some yellow etc.  We are all battling the same disease, lets try to do it without stressing out others with hurtful remarks. Lets all now get on with preparing for the festivities that lay ahead, so much to look forward to.  I know I have plenty to do before then so I shall be busy, busy , busy, particularly as we will have whirlwind Izzy with us for most of the time!

So this now needs to be put to bed BUT I wanted people to know the whole truth of what happened.  I needed to let people see that I do my very best for this site, that I and Paul work hard to keep us all safe from people wanting to just use this page for their own ends.  Now I have posted this I want it to end.  Lets all get on with living our lives now, this is all over and done with, to that end I am deleting her post and the thread.  We don't want it to continue, whats done is done.

Its a bit too soon for drinking surely

We are going to be having rather a lot of fun days at our house as school has closed and Izzy will be spending her time with us.  Grandad is always a firm favourite with our little Izzy.  Today when she arrived she wanted to have two dollies, one for her and one for grandad.  Off they went with Izzy playing the roll of mommy and grandad was her son, called sweetie.  The game played out very well with her telling "sweetie" what to do with his baby.  The end result can be seen on the picture with the two babies having a drink stop of vimpto, though it does so look like a glass of red wine!  One for the family album I think.

Later we went to a friends house where we, along with a few others, had been invited for a coffee and some refreshment in the shape of pizza and coffee, plus cake or mince pie.  It was so lovely to be sitting with friends in front of a roaring log fire and Izzy loved playing silly games with everyone joining in. So nice to have good friends.  This friend in particular had been a friend of Colin since they began  senior school. Indeed it was he who introduced me to Colin and to everyones surprise we were married four months later!  We had a lovely relaxing time before we headed off to our garden centre.

Izzy had said she wanted another unicorn for Christmas and a blanket!  Quite why she wanted a blanket we do not know but hey, that is kids for you. When we arrived at the centre we saw that there was a Santas'  grotto and asked if there was a space for Izzy to meet santa.  We were fortunate as we only had to wait a few minutes and then we were in!  The grotto was lovely with lots of decorations and plenty of chairs for the little ones to sit.  Stories were told by both Santa and mummy Claus before the children were asked to go up for a picture with Santa and receive their gift.  On opening her gift imagine all our surprised faces as we saw that she had been given a unicorn!  She was squeeling with delight and we too were so happy at this result.

On looking around the centre I noted a beautiful throw, blanket thingy. All snuggly it was and perfect for throwing over Izzy when she is on the sofa having mommy cuddles or to keep her feeling safe when she is poorly, the cocoon syndrome.  I couldn't buy it then as she was with me but I shall return today as she is home with mommy and so leaves me free purchase this.  Result all around, well so long as they haven't sold out of them when we get there today.

Right, time to go.......... thank you so much for reading this blog, for those that like the page thank
you so much too and for those that share a huge THANK YOU!!!!!!!!

Love to each and ever one of you.

Carole xxx