Warning: If you are easily offended, you may find some of the language and innuendos in this blog post offensive. Please do not read if you feel you will be upset or distressed. I apologise in advance.
Dear jinasc, I totally appreciate you not wanting to give up your valuable time, hence the "Warning." However, it appears that even, my "warning" has upset you. : (
I posted it because it relates directly to how PMR/GCA effects ME.
And, in this case, how many people, have no idea what it is like living with a chronic illness/disease. They, in many ways expect you to just carry on "shinning" and to always put forth, the very best version of you that there is. Well, unfortunately, for me, that is not always possible.
When I write, I write from my soul. It is here, where I store my anger, resentment, fear, angst, and all the other feelings and emotions that don't usually get to "come out and play" in my day to day interactions.
So "yes," my Rants take on an expressive, colourful, truthful tone that say, what I need them to say. My Mom always said, "Better out, than in."
The pre-apology was provided, so that people like you, would see that I mean no ill intent, or offence. It gives you, up front, the choice to read or not read. I was not apologising for my rant.
Your assumption that my Rant is actually "upsetting" or "distressing," (like other things you've seen on the net) is based solely on my warning... but that's a bit unfair, as I can't imagine my little rant compares, to even a tiny, fragment of the upsetting/distressing stuff out there!
In any case, I totally respect your choice not to read my rant, as I would hope you, respect my choice to post it, with an appropriate warning, of course.
I follow your blog faithfully and am always appreciative of every word, every thought and every rant!! You capture all the pent up feelings most of us have. Keep on ranting for all of us, please.
Thank you vnett, That's really great to hear! Like I told Anonymous, I'm happy when someone likes my words, but if they don't resonate... that's okay too. If I capture even the slightest crumb of what PCR/GCA makes you feel, I am thrilled! Thank you. ☺️
Your postings on this site have never been ignored or not read and in all cases answered by one of those who contribute. They have never distressed me either.
A link without who wrote it and about a rant only then I query.
Ahhhh, Jinasc, I thank you for that, and fear we have had a miscommunication!
My post was NOT a "link" to a site with an "Anonymous author... it was a link to a post on MY blog site, which I post here regularly.
It was a link to my response to a comment left on my blog site, by someone who chose to give me vague, glib, "drive-by," anonymous feedback and then not respond to my specific questions, about the feedback.
This Anonymous person asked more of me... wants me to do better, wants me to write better... be better. S/he doesn't care that I'm occasionally debilitated by chronic illness... S/he only wants to be entertained! ...and I took offence to that. My response was swift and as usual, colourful.
Just so you know, I receive EMAILS from HealthUnlocked whenever anyone makes a comment on one of my posts. Here (cut and paste) is the email I received regarding your comment:
jinasc wrote:
You read that correctly............so no apology needed, I rarely take a fence, I prefer to leave round the garden. :)...
If you'd like, I can send you a copy of the actual email I received from the HealthUnlocked Email Server.
I suppose it was a troll. They fascinate me, like looking under a stone. You’ve been trolled! Now you really are famous. Soon you will need an agent. Keep it up! Love it. Your writing conveys the sheer destructive power of these ruinous diseases like nothing else.
Thank you! I have a troll!!!! WOW! My 1st troll is my 1st critic! I'm fire!!!! : )
By the way... great sentence! "...the sheer destructive power of these ruinous diseases," I may have to plagiarise that, if you don't publish first!!!! xxxx
She is indeed naughty, isn't she SheffieldJane 😉 also entertaining and funny. Keep it up mamaici1 Your posts are enjoyed by many us. I also love the photos you find to share. 👏👏
Thanks Hollyseden! As we'd say at home, "Potty Mouth." Or a "Mouth like a Long Shore-man!" It's okay... I really have ben called worse! *laughing* One thing I have NEVER been been called is disingenuous, so it's all good! Thanks again!
Hi Melissa TRUUULY - REALLLYY 'some people' - !! Anyone who makes backhanded compliments is to be avoided I think - it highlights not only their own confused perceptions but a clear lack of anything empathic. Life is just too short to be bothered by this kind of stuff - ALL your posts have been very creative, insightful and challenging to read - I have appreciated them immensely and wonder how you manage to write so well when most days I can't get my head out of the fog sufficiently to write a sentence ...
....it's funny, only when I am able to write, do I find the real "me." All the other times I'm just going through the motions, walking in a dream. When I write is the only time my head ISN'T in a fog!
Thank you.. thank you for your support and for coming to my defence! I was really hoping to gain some constructive feedback, but...
You are right, "Life is just too short to be bothered by this kind of stuff." 🤗
xxx
I haven't ever read anything offensive at all on your rants. I appreciate the warning if people can be sensitive about language (My mum wouldn't have liked it) but sometimes a good swearing rant gets it out and off ones chest. If someone signs something anonymous it's not worth reading it. Poopadoop might not be my given name but it has its own persona and gives me and others a laugh- except when I use my superdooper poopascooper with my dog (Yes it comes from there not betty). Anonymous is meaningless and cowardly, especially when it's not constructive criticism. I take that finger and double it...the British way!
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Thanks Poopadoop! I am happy I have not offended you with my rants.
The "Anonymous" thing didn't bother me until I realised that I wasn't going to get anything further from him/her! And as I re-read the comment, I saw that it was BS... There's nothing to it, except like Rimmy mentioned, some "backhanded compliments," and a vague attempt to motivate me! Hahahaha.
Anyway, thanks for your comment! I appreciate your support! 🤗
I love your posts. Anonymous can do one... I sent your first post on PMR rage and rant to my children. That made then sit up and realise mum is actually suffering. Another fan here
Perhaps I should do that. My daughters hardly ask me how I feel after 4 years of pmr. If they do I say “I’m fine” as we mums do, and they have no idea!! Mind you I hope they never end up with it. It is a genetic Illness.
Very true Melissa. My daughters are in their forties. But I over - worry about them. I lost my first husband, suddenly, when my daughter was 9 months old. Another couple of traumas since, has left me over protective I guess. Hope you have a good day today. The weather is beautiful.
Yes, my daughters are 40 & 35, and I still worry and coddle them.... So sorry to hear about your 1st husband. I'm sure that experience made you even more protective of her!! And yes... all the other traumas we experience along the way. My youngest was diagnosed with a rare ovarian cancer when she was 32... If you don't think I lost my mind then!!!!! There was NOTHING I could do but watch, wait and pray! Life is pretty tragic at time, isn't it?
Have a great day yourself... yes here in Brighton it is sunny and will get up to about 65 degrees! WOW! That's summer!
I can swear with the best of them! Your rants say it all, they are resonant with our pent up anger and frustration. You say what I would love to be able to write with eloquence and honesty. Unfortunately my writing skills are not up to the task. Thank you, long may you continue!
If my rantings express even a tiny bit of what you (all of you) are feeling, about your diseases, that is the biggest and BEST complement of my writing that I will ever need!
Screw the critics... if my writing resonates with YOU (the people on this site) that is all that matters!
These diseases have altered my life, but because of this site and all of YOU, I have risen like a Phoenix from the ashes... so THANK YOU for that!!!!!
I know you like my Grandma's sayings, so here's one for today:
"No matter what you do, someone's not gonna like it. That someone might as well not be you."
If it makes you feel any better, I've taught writing at the university level, and there's not a thing I can teach you. You've been writing for years and it shows. Most people don't think writing memos, emails, correspondence, presentations, manuals, proposals etc. is writing. But it is. Getting your message to the audience is the craft, whether you're writing sonnets or advertising copy.
You are capturing all the funny and frightening experiences we share, the giddy and depressed emotions we feel, and doing it with with wit, humor and intelligence. It's all there. You've got your own style which is vivid and engaging. And much of what you write can be applied to anyone who's got some health thing going on - whether it's the flu or something signaling the end is neigh.
Keep ranting. It's good for you, and it's good for us - your audience.
OMG! I love your Grandma!!!!! She is/was sooooo wise! I love, "No matter what you do, someone's not gonna like it. That someone might as well not be you." PERFECT!!!!! ...and so true! *laughing*
Thank you, thank you, thank you... I am chuffed! A compliment from YOU, a University writing teacher, is a compliment indeed!!!! *blushing*
WOW! *smiling*
See, now that was FEEDBACK! Clear, specific, detailed, focuses on what I am doing right... Thank you!
If as you say, I am "accurately" capturing the "funny and frightening experiences," as well as the "giddy and depressed emotions we feel," and I'm doing it with "wit, humour and intelligence," I am over the top with joy!!!!!!!!!!!
You're saying what all of us wish we could say to the people in our lives, but giving it to us so when we show your pieces to them, they don't hurt. They laugh along with us, and at us, and also learn the truth about our challenges.
You are the one with the talent. I'm just the one who knows it when I see it, but can't do it.
Enjoy yourself and keep working at it. You have a lot to share besides PMR/GCA stories.
I would love to write something witty and incisive like you do, Melissa. You express what many of us struggle to put into coherent language that "tells it like it is." When I see a new link to your blog my brain goes "oh goody" like a kid.
i also love Estellemac's Parker stories.
I have a tendency to be rather serious these days and a bit of light relief, especially when combined with insight and humour, is very welcome.
Please, Melissa, whenever the muse strikes, let us know. As you can tell by the previous posts you have many fans on this site. If you want to howl with rage and disappointment, we'll be howling with you (in my case, quite quietly, don't want to upset OH.) If you want to share your thoughts on what life throws at you and how you cope with it, please share away. I, for one, can't wait.
Incidentally, don't you just love (ha!) predictive text. It took me three goes to convince my tablet that I didn't want to "bowl with Dave" rather than howl with rage.
Awe... thank you! First, I have to tell you that I almost spit out a mouthful of coffee when I read that your tablet wanted to you to "bowl with Dave!" Hysterical!!!!!
Second, I love that your brain says "oh goody" when it sees I have posted a rant!!! What a lovely compliment! Thank you.
I am always amazed at the warm reception my rants get... I guess the rage, disappointment and frustration resonates with a lot of people, which is very cool, but at the same time very sad. I am so very thankful that I'm in touch with these feelings, and seem to be able to express them easily... they actually just sort of take over and write themselves!
Thank you for reading and thank you for your support!
...and if you'd rather "bowl with Dave," I'll understand. : )
I had a great holiday in Menorca with younger daughter and Evie. Only one day of flushing and tiredness.
Granddaughter with HLH had to have her baby delivered due to fluid in his abdomen and his heart. They did not expect him to make the night. However 1 week on he is slowly improving. They are still worried about his anaemia, heart and bone marrow His brain scan showed nothing untoward. They are going to take him off the oxygen tomorrow, he now weighs 3lbs 1oz. Mind you when they did the caesarean they left a swab in, so 2nd op for her.
Since returning from hol. Symptoms of pred have returned with a vengeance. Just thought I would let you all know after all the kind messages you sent.
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