When Strangers Connect

Those that cant do... rant.

rantingsofamadwomanblog.com...

[Rugger]

mamici1,

You have a wonderful way of expressing what we all feel about our fellow forumites.

Many times we read "I don't know what I would have done without this forum".

I hope you get to see some snowdrops this weekend.

[teesher in reply to Rugger]

I agree Rugger. I only found this forum recently and find it extremely comforting, helpful, informative and engaging. It's a forum of friends.

[Hidden in reply to Rugger]

Thank you.

[Hidden]

My sister texted the other after I shared some info with her that I had gleaned from here and said "You are getting a lot of support from the forum". I just said yes. She has been happy that i found it as i live 150miles from nearest family and of course they feel helpless in the face of such conditions. It is brilliant that strangers from all parts of the world have a voice on HU and the compassion but forthright posts and messages are great. At 2am in the morning you can read and contribute to on going posts or start your own. Distraction, humour and a sense of connection is good medicine!!

[micheleinnaples]

You have a gift of writing in a way that myself and fellow forum participants are reading and thinking to ourselves (and maybe saying out loud)...."wow, that is exactly how I feel!" It's nice to know we aren't alone! On a side note, today I'm walking on that tightrope and the winds are calm...

[Insight329]

At work, but I popped on to see what was new and yippee Mamici has been writing!!! And darn it, now I'm sitting here all teary-eyed. (Darn tender heart.) It is quite a special place isn't it? And although we are strangers, I certainly don't feel like you are strangers. More like neighbors, friends, brothers, sisters, and that one weird aunt. (HA...small 'a'...not to be confused with an Auntie.)

The place I work has a culture of caring, dedication, volunteerism, and a commitment to changing the world. It has a very unique feel that I've never experienced in any other place I have worked at. I contribute it to our Jesuits.

This form has that same culture: very caring, dedicated and committed to helping those in need. I don't know who is responsible for developing (and maintaining) the 'tone' of the forum, but I'm guessing that the Administration, Aunties, and Uncles have had a huge part in providing and maintaining the caring nature found here. Whomever, thank you. This place is really a sanctuary.

Another great reflection, Mamici!

[teesher in reply to Insight329]

A sanctuary - you got it in one.

[Hidden in reply to teesher]

Thank you!

[Hidden in reply to Insight329]

Yes... more like virtual neighbours friends, brothers, sisters! I like it.

Thank you for appreciating my rants!

[mngirl in reply to Insight329]

totally agree

[SheffieldJane]

That gave me goosebumps. 🌦

[Hidden in reply to SheffieldJane]

Wow! Cool. Thanks for reading and reacting with goosebumps!

[JulianJ]

Great post

I really do think it's important that people are real. I try to be the same wherever I am, well except for Facebook, very few posts from me there.

Sharing how we feel and what we have done is very cathartic, I go days without posting and then write some rubbish about something that has happened to me. Yes I tell the truth even if it may seem like I'm extracting the Michael.

Keep up the good work, I always enjoy reading your posts

[Hidden in reply to JulianJ]

Thank you for your support Julian!

[Patience47]

Brexit.......Trump ??????????

Thank God for both!

[Hollyseden]

Ditto what Rugger said!! You do have a lovely way with words and I'm sure I'm not the only person who loves reading them. I enjoy the pics you put up too 😊

[Hidden in reply to Hollyseden]

Thank you so very much.

[DorsetLady PMRGCAuk volunteer]

Hi,

We may not “know” you, or anyone on here, personally, but we know what you are going through -

Your tears, your fears, your pain, your frustration, your laying awake at nights, your what if’s, your prayers (if you’re that way inclined), your jubilation at small steps achieved, your ups and downs.

How - because we’ve been there, done it, got the T-shirt.

Why - because we are human, and we don’t don’t like to see, hear, read about a fellow human suffering.

WE KNOW, WE CARE. But most of all - we are here - available anytime. Good times, bad times. No judgements made.

Not super humans who know everything, but normal people who care.

[enan-illuc]

Mamici1,

Well said! It is a great 'place' to be a part of and you are a great addition. Thanks!

Enan

[Hidden in reply to enan-illuc]

Thank you for the very kind words.

[GOOD_GRIEF]

Grand Central Station...now there's a place to contemplate the highs and lows of humanity.

Glorious and base, simultaneously.

[Hidden in reply to GOOD_GRIEF]

I know right!

[York54]

Well said, Mamici1. This forum is my medicine!!

[Suet3942]

That’s so insightful (is there such a word)? mamici1.

I love reading your posts. Thanks for brightening up my day when I am feeling very nervous. Seeing my consultant this afternoon. Haven’t seen him for 3 months. The jury has been out as to whether gca has reared its ugly head since developing pmr 4 years ago. Got down to 5 mg pred. Felt really good and then bam - sore scalp and slight headache. Exactly what happened to you. Hope your day goes well. Spring is round the corner.

[Hidden in reply to Suet3942]

Thank you for reading and for your support.

[Jackoh]

I'm sure your blogs are going to be used Mamaci1 to bring more understanding and highlight these conditions of GCA/PMR which no one seems to have heard of until they get one or the other or both.

As you say this site is so special- long may it continue!!

[Hidden in reply to Jackoh]

If my rants about PMR/GCA are of even the slightest comfort, to anyone struggling... I'm honoured.

[Jackoh]

And if I could spell your name properly it would help!!😂

[Hidden in reply to Jackoh]

No worries. I'm Melissa by the way...

[Hollyseden in reply to Hidden]

Hello Melissa 😊

[Jackoh]

I might stick to Melissa- have to keep referring back to everyone's nick name( sure there is a better way of expressing that) trying to remember how to spell them- some a bit complicated .All too much for my brain fog sometimes!!

[Hidden in reply to Jackoh]

Yup, sometimes it's the simplest thing that trip up my brain...

[fren]

Mamici1 - you've spoken my mind too.

I found this space just over two weeks ago whilst struggling with my first flair.

I felt isolated, trying not to let my problems spoil things for the family, a failure, as I had struggled for a year to please my medical experts, and crashed, and hopeless, so -- so negative, completely overwhelmed by the things I could no longer do.

Then I met all these amazing people, the knowledge, the understanding, the sharing, not to mention the humour.

Not only do I feel better but when my daughter caught me laughing she explored the site for herself. She told me she found it eye-opening, then went on to explore the PCOS sister site.

Effect:-

Mother to daughter..... over Morroccaine Tajine, in big city restaurant after visit to dishy anaesthetist following early rise and lengthly shower,.... "I really, really want to go to Auchan (big big supermarket).... I've saved a spoon!!"

Daughter to mother.......at checkout with trolley loaded with sale priced boots.. "Go sit and relax over there mum, I think that spoon was bent."

Mother AND daughter booked 3 day jaunt to Marrakech Thalassotherapy centre in June.

They have Segway there, I've checked.

Heartfelt thanks to everyone. So good to feel good again.

[Hidden in reply to fren]

Love, love, love this!!!!!

[Insight329]

Fren, you are isolated no longer. I will give you a warning: this place becomes addictive (but in the best possible way). I found it very heartening that your daughter came in and read about the diseases. She will now have a better idea of what you’ve been dealing with. Laughed at her bent spoon. Take care!

[Hidden in reply to Insight329]

Glad it's not just me that's addicted. I have to sit on my hands sometimes. I came from a big family where everyone shouted to get their turn- this has lead to my being a sticky beak who just wants to be heard. I think working out your own experience is helped by setting out an "answer " that hopefully helps both them and me. I usually have to ban my self but when you are awake at 2am you need a distraction!

[Insight329 in reply to Hidden]

What is it about 2:00 am? Did the makers of Pred add in a little alarm to wake us at 2:00? So many nights I, too, am awake at that time. Regarding the addiction, at first I just wanted answers. Then as I got to ‘know’ the ‘cast of characters’, I started to care about how they (and their family members) are doing, results and answers to their struggles, wonder how they are doing while visiting families/travels, interesting stories of their past, etc. i think that’s the ‘human experience’ of becoming a member of this group. I bet those that are watching from the sidelines are experiencing it, too. I’m so glad you are vocal, Poopadoop. You bring a really fresh, fun voice.

[Hidden in reply to Insight329]

Ditto and right back at you insight 🌻