You knew it was coming...
Warning: No warning needed, almost no profanity! Seriously!
PMR, GCA, Steroids, Rheumy’s, GPs and more… pleas... - PMRGCAuk
PMR, GCA, Steroids, Rheumy’s, GPs and more… please more!
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49 Replies
•
In part.. there is an answer. My original post (which was meant in a humanitarian way about the children) is gone as far as I can tell. Not just no longer no more comments but gone. Appreciate your eloquence and humor.
You are right. I thought at least good sense had prevailed and the post had been allowed to exist. I wonder what the reasoning was to delete it completely? I thought the original response, to turn off comments, was a reasonable compromise. Although I was very miffed when I was unable to post a longish reply. I may have been the last person who got a reply onto that post.
Does this mean we aren't allowed to express distress about terrible things in the world in which we are living, and suffering our disease? Guess we will all have to make sure we directly relate our posts to PMR/GCA. I do understand the need to refrain from directly asking for political action (unless to pressure governments to fund research into PMR/GCA???) !
I have already conveyed my feelings to Yogabonnie feeling that some issues transcend politics and speak to you as a human being.
Well, as you know, I made a post about the importance of recognizing that stress impacts our disease. It was meant as a direct response to the disabling of yogabonnie 's post. I think there's little doubt there is 99% support for supporting the humanitarian view.
I agree completely. We don't live within the bubble of our condition. I am sure that the horror evinced by the sight of those children and the anger I felt had an impact on my stress levels. Like many PMR/GCA sufferers I am one of nature's worriers and to limit my worries and concern to my immediate environment would be impossible for me.
I love the current immigration policy. America is not the world's dumping ground. The parents made the decision to separate from their kids. Also, 90% of the adults aren't even related to the kids they're bringing over here.
Now, you lnow how I stand.
Are we accomplishing anything?
Don't think so!
• in reply toPatience47
Well... you did get to state your opinion in a (hopefully) safe, non-judgmental, tolerant space and so far, no one has told you, that you're NOT ALLOWED to post that opinion.
Isn't that what freedom of speech is all about?
I don't happen to agree with your opinion, but I had freedom of "choice." I could have read your post and kept right on going to the next post... saying to myself, "Well that's Patience47's opinion and he is entitled to it." No harm, no foul.
Patience47• in reply to
So, what's your point?
• in reply toPatience47
You were able to express freedom of speech; a right we ALL should be entitled to (in real life and on this site), without repercussion or consequence.
I exercised my freedom of choice; I read you opinion (that I do not agree with) and was able to remain detached, civil and respectful, when I responded.
We remained friends and it was a win/win. That's how an on-line community should work.
"Not like the brazen giant of Greek fame,
With conquering limbs astride from land to land;
Here at our sea-washed, sunset gates shall stand
A mighty woman with a torch, whose flame
Is the imprisoned lightning, and her name
Mother of Exiles. From her beacon-hand
Glows world-wide welcome; her mild eyes command
The air-bridged harbor that twin cities frame.
"Keep, ancient lands, your storied pomp!" cries she
With silent lips. "Give me your tired, your poor,
Your huddled masses yearning to breathe free,
The wretched refuse of your teeming shore.
Send these, the homeless, tempest-tost to me,
I lift my lamp beside the golden door!"
Emma Lazarus
November 2, 1883
• in reply toGOOD_GRIEF
1883... *sigh* we've gone a long way, backwards me thinks.
That made me cry, so apt
For those unfamiliar with the poem, that's the inscription of the Statue of Liberty.
Beautiful.
After consideration, I have deleted a reply to this comment because it was deemed to breach the guidelines on not being derogatory.
• in reply toPolywotsit
: ( He was just speaking HIS truth.... but I get it.
It's probably my "fault" that both strings are gone. This one will probably disappear, too.
The world didn't stop because I got sick. I didn't stop being responsible member of the Free World because I got sick. Doing something constructive to try and right wrongs relieves stress. Being called to action is POSITIVE stress, not the negative stress of doing nothing. None of us able to type comments here are helpless. If we can complain about our woes, we can type messages to people in power.
There are any number of things I can't do right now, but protesting inhumanity being committed by my country is one thing I can still do.
• in reply toGOOD_GRIEF
Nobody's fault...
I may not be able to go on protest marches anymore but I sign petitions and write to my MP on a regular basis. I don't like narrow definitions of what is political. In the original Greek sense, we are all member of the polis within a democracy and have an absolute right to protest against that with which we disagree and to applaud that with which we agree. I can't compartmentalise myself in such a narrow way as to separate my PMR/GCA self from all my other thoughts and activities.
Agree with you 100%. I love it when posts occasionally go off disease and talk about more personal things. It helps you to know the people on this forum better.
• in reply toMikb
Yes, that's a really good point, Mikb! I also love posts that go off-piste...
I have always really enjoyed the 'personal' posts on this forum and like you Melissa really appreciated the diversity of personalities and 'opinions'. It is inevitable however that at times some of the comments will not be ones we either support or appreciate - I recoil for example at the very word 'guns' and certainly any 'normalised' discussion about them, BUT I also realise it is vital that we can each say what we need to - so long as it isn't directed to or at other forum members in a hostile, derisive or aggressive way. There can be fine lines of course and the administrators must be able to draw lines when necessary - but given that stress and dis-stress directly impact our health then it is impossible surely to rule out discussion about what causes this in each of us. There is also as you mentioned the 'choice' NOT to follow or join in on a particular thread and given the complexity of the world in which we live - a far less than 'perfect' world - then it is crucial (in my opinion) that tolerance and diversity are supported and encouraged here as much as possible and the shutting down of any discussion should be 'rare' and only a 'last resort'.
Rimmy
• in reply toRimmy
Thanks Rimmy. I agree with you. And yes, there can be "fine lines," which is why I feel it's important that our Administrator(s) {and not individual members) make the final decision(s) about what is and what is not appropriate.
Both posts have been deleted now, but I was reacting to most recent post (written a day after Kate "froze" the original "political" post). It was titled “Let’s Keep Focused,” and the content was: “This is not the place to discuss politics please stop.” I felt the post was unnecessary and a bit patronising, as the discussion had already been shut down.
I'm not comfortable with members, dictating what other members, can and cannot post. I believe that could (all too easily) turn into a "majority rule" situation; where the side with the most partisans, RULES. Before you know it we have a lot of topics that could be deemed "off limits."
I do believe the Administrator(s) should be allowed to do their job. If they determine a post or it's comments, has crossed the line; freeze the discussion or delete the post.
I'm not a big fan of "authority," but in this case I don't think "self policing" websites can work. We'll end up with "member against member" cliques and we're back on the "island" again!
Rimmy• in reply to
Oh I didn't get to see/read the second post - I never even saw it before it was removed but agree forum members cannot themselves start dictating who can say what ! But fortunately this forum is generally 'good' regarding respecting other people's opinions and administrators have rarely (at least since I've been here) intervened.
I wasn't very 'happy' however regarding the removal of the first post and responses (including my own) regarding refugees as this kind of situation 'transcends' mere 'politics' in almost every way and is I think a humanitarian issue pertinent to ALL of us. The thing is what people define as 'political' is in itself subjective - some think the term applies only to 'party politics/policies' while others (including me) think politics are unavoidable and implicit in almost every human interaction. I won't go on about this - and I do think ultimately administrators' are (unfortunately) 'necessary' - but the criteria they use to determine their decisions is another matter - and maybe (altho I am also not a fan of unnecessary 'bureaucratic authoritarianism') we should all be able to see a clear statement of terms of reference or some of us might just feel some 'decisions' are subjective and/or 'arbitrary' .
Rimmy
Well said, all of you, glad I can’t sleep tonight. Will try again now. A good night or day to you all. 😴
Nighty, night.
Personally, I enjoy the different posts and pictures. I don’t like to think that I am only my ailment. Yes there has to be guidelines ,very difficult I know .
Melissa, is it a Freudian slip that in your rant you have called this site HealthUnblocked, instead of HealthUnlocked?!!
*laughing out loud* OMG! That is too funny!!!!!!
Yes it must have been an honest to goodness Freudian slip!
Hahahahahahahahahahahahahahahahaha!
PolywotsitPMRGCAuk team member
Later today I shall post explaining why I felt I had to delete the two threads. Meanwhile I would respectfully ask forum members to have a thought for me as administrator. I am doing this work completely voluntarily. It is difficult for me to be constantly interrupting my daily life to deal with issues on this forum that are causing lots of report messages and private messages. I am going to a pilates session. After that I will have a coffee with my husband and then deal with some emails. After that I'll come back to the forum. Thank you.
First time I've seen a reference to S E X on this forum. Oh yes, it does affect ones private life and all credit to the partners who stay supporting us difficult members of the club.
As a sexual educator, empowerment coach and speaker who is passionate about the promotion of healthy sequality AND who has recently been diagnosed with PMR, I very much identify with the comments about how this condition impacts our intimate relationships. Thanks for naming this aspect along with the other fallout from living with PMR.
I was not diagnosed for 5 months and the deterioration of my condition absolutely affected my relationship with my husband (we were just married a few months when the PMR symptoms hit me). Needless to say I went from wanting and missing sexual activity, dancing and exercising to just wanting to be able to wash my hair in the shower. The worst was not knowing what was going on.
Now I’m on Prednisone, and dealing with other existing conditions (knees with torn ACL and severe meniscus tears that will likely require surgery).
Through it all (although I am relatively early in my journey), I realize how much strain health woes put on our relationships. It took me/us awhile to learn how to communicate our needs, worries and fears to create a more supportive outcome.
I’m ok saying that I miss sex, and I’m also determined to explore other forms of intimacy if my body (and mindset) are not at full capacity. I have also grown my empathy for others who face health challenges that are inturruptive of a healthy, pleasurable sex life.
PMR is a tough pill to swallow, especially as a newlywed, newly-retired 56 year old, but I am ever grateful for the support of my husband, family, and friends.
Glad to have found this forum because as much as I try to inform my supports about my condition, it is you folks who truly “get it”.
• in reply toPMRCanada
Wow! Thank you for your bravery and honesty!!!! I don't know how the community will respond to the comment, but I hope that we're all mature and adult enough to accept it for what it is... an honest, open, comment about something that is important to you and of which you felt comfortable talking. (Kudos to you!) If there are some who are not comfortable with it, I'm hoping they will just scroll past it.
PMRCanada• in reply to
Thank you.....for your contributions to this forum. I so appreciate learning of the experiences of people with PMR, especially as I am in the early stages and eager to soak up all the knowledge I can as I travel on this challenging journey. Thus far I have learned that PMR impacts us psychologically, physically, spiritually, including our relationship with ourselves and others. I have also learned that I cannot rush the healing process (despite initially planning my Prednisone tapering schedule down to the day......lol, silly me). What I do have control over is what I eat, when I rest, what activities I partake in, and whom I choose to share my story with. Which brings me back to this forum.
For many years I coordinated (live) support groups for people who were harmed, broken, overwhelmed and often misunderstood. Now I hope to glean support, understanding, knowledge/wisdom, celebrations and healing from being part of gathering of special folks......those who live with PMR. Thanks for welcoming me.
• in reply toPMRCanada
Thank you for the lovely comment PMRCanada! Yes, I too have learned a lot of invaluable lessons from my PMR/GCA; and especially from the amazing people on this forum! Stick around and you will get the support, understanding, knowledge/wisdom, celebrations and healing you are seeking from this special community! Welcome!!!!
I had a horrible no good day yesterday. First of all there was the unhappy, frustrated feeling coming out of this forum, which was unusual and upsetting. Then I went to a little group of wannabe writers I've been part of for many years, only to be told every time I tried to contribute a remark that I was interrupting someone else and could I wait my turn - not always in exactly those words, but that's what it amounted to. I think it happened about four times. I was in tears by the end of the meeting and still feel wretched. I suppose I now spend so much time alone I've forgotten how to interact properly in a group, but I honestly thought I was contributing a quick remark, not intentionally interrupting.
Something positive for you, Heron. Thank you for all your informative posts, the ideas you share with us all after careful research, the interesting threads you initiate and your thoughtful replies. I have just bought Vitamin K2 after your write-ups and some of my own reading, had to order it as there is not a tablet to be had within a 15 mile radius! Your influence sure is far-reaching.. respect!
I was thinking about this 'spending so much time alone' last night, mostly I like being on my own and enjoy socialising when I feel like it, but mulling things over can become a bit like too much navel-gazing, there's such a thing as over-analysis in my case! This community is so important to us all and I'm glad Kate has done a wonderful job of pulling it all together.
I hope today, for you, (and all of us) is much better than yesterday.
• in reply toHeronNS
I'm so sorry that happened to you HeronNS, that must have been so crushing for you. I think a lot of us spend too much time alone and have forgotten how to socialise. Feeling crap all the time changes your self image and your perceptions about the world and the "healthy" people in it. Things start to become distorted and surreal. My own husband says I communicate differently than I did when I was working and volunteering... he can't articulate it exactly, but believes my communication style has changed... making it a bit more complicated understand me and where I'm coming from. Hang in there, things will get better.
"So far you've survived 100% of your worst days. You're doing great." ~Unknown
Some days there is just something in the air and I, you, just seem to be a magnet for negativity. I recognise the scenario well. Possibly when we are riding on the crest of a wave, we just don’t notice attempts to shut us down. Sending you a hug!
Some of the forums that I participate have special section " Water Cooler" that is not closely monitored or censored. Those who venture to Water Cooler do that on their own risk, and cannot be thin skined. Any topic is allowed. In that way the main site and "serious" discussion are not interrupted. Maybe that is what we need here.
I agree - on the second PMRGCA forum to start up in the UK we have a long list of headings about all sorts of PMR/GCA-relevant subjects. Then there are a few for photos, greetings, pets and holidays. Then there is Chatterbox - which is the one that is used most and always has been! But we haven't had any banned subjects - although over the years a few people have been banned as there is a limit to what a group of mainly ladies will deal with and trolls are not welcome.
But a Water Cooler bit sounds a good idea.
• in reply toPMRpro
It certainly does! I'm happy you like it PMRpro!!!!
• in reply tonickm001
WOW! Cool.
SheffieldJane• in reply to
It sounds complicated to me, (the woman who turns up to medical appointments a month early). Some of the best discussions evolve from a quite different beginning, I love the organic nature of that. I think I would feel self conscious in an area designated for chatting. Willing to try though.
• in reply toSheffieldJane
...but if you only have two choices; 1.) not talking about what you want to talk about at all; or 2.) finding your way to the "Water Cooler," and having a safe, non-judgemental space in which to to vent your opinions, which would you choose?
SheffieldJane• in reply to
I have always felt safe and free on here and reading the guidelines Kate has posted seems to cover what I talk about. I am open minded and would certainly peep round the corner at you guys.
I'm inclined to think we're all adults here and can conduct ourselves as such. I don't need supervision, and am quite capable of filtering out what I have no time or energy for.
I obviously missed something interesting yesterday,ie a post from yogabonnie,l presume we have to be very politically correct etc on this Forum,although the things that are happening in this world can cause us stress,which can effect our condition......
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