PMRGCAuk
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Teach Them Well

Teach Them Well

To say I was thrilled would be an understatement! ...but I was over the moon to receive the text messages, this morning, from my son-in-law (the 3rd year medical student) that read:

Text 1 - Hi Melissa, I hope you are having a good day. Quick question; before you had GCA did you suffer from headaches? This week we are looking at headaches and GCA is coming up quite a lot."

Text 2 - " And sorry to ask again, what were your initial symptoms that you presented to A&E/GP before your official diagnoses."

HURRAY! He's learning about GCA!!!!!! WOOOO HOOOO!

We texted back and forth for more than several minutes and he attentively listened and responded to the "overload" of information that I thrust upon him!

He asked all the relevant questions and very sweetly apologised for the UK medical system in missing my initial PMR diagnoses (by about 2.5 years!) and for being misdiagnosed at A&E and told I had a "migraine," when in fact it was GCA! (This, after, a Junior doctor had diagnosed it as GCA and wanted to start me on steroids and send me to Eye Hospital the next morning for eye exam... The CONSULTANT said it was a "migraine, and sent me home!) 🤬

Text 3 - "GCA is being discussed as a medical emergency and something that we need to look out for when consulting with patients about headaches"

Ahhhh, I am so proud! My daughter chose wisely. He is a bright, empathetic, compassionate, young man who, frankly, takes more of an interest in my health issues, than my daughter does 🤔... What's up with that?

I told him that I had every faith that he would never "discount" a patient or attribute her/his symptoms to them being a person of a "certain age."

He thank me for that and said, "I will NEVER miss GCA."

I responded, "Nope, not if I can help it!" 🤣🤣🤣

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How fabulous on so many levels! You being able to inform him and “teach” him about GCA, him eagerly learning (which will benefit his future patients), validation of your misdiagnosis, and finally having such a fine young man in your family married to your daughter. Win, win, win, win.

It must have felt great to impart such wisdom and share your story.

So happy that you are able to play a such a positive role in an otherwise negative experience. Sounds like a Restorative Justice Health experience to me. Congrats!

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Thank you PMRCanada, Yes, it was truly an incredible experience... he is such a lovely young man. It was a win, win, win!!! Future GCA patients will be lucky to have him!!!! ❤️

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What PMR Canada said 👆 You must be very proud of him 🤩

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Yes, I am. He will be a great doctor and so far is a good husband and dad! That's all I can ask for really....

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Exactly. I feel lucky to be able to say that both my sons in law are good daddys and husbands. Can't ask for more.

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Hopefully, the rest in this particular lecture won’t “miss” a GCA duagnosis in the years to come either.

Small steps, small steps, but welcome ones!

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Fingers crossed!

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"who, frankly, takes more of an interest in my health issues, than my daughter does 🤔... What's up with that?"

It's cos he's a medic - all healthcare professionals have a very different worldview ;-) Be careful - you may find the future dining table conversations a bit full on!!

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...yes, of course, I get that. It was, but my poor attempt at humour. He is a med student and very engaged and interested... She is a full time Mom, who also works full time and supports the family. It also has a lot to do with the fact that both of my daughters believe I an "invincible," as I have unfortunately fanned the fires of that fallacy, for many, many years. It's now biting me in the ass, as they just assume I will conquer any medical issue thrown my way! 😳

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“ It also has a lot to do with the fact that both of my daughters believe I an "invincible," as I have unfortunately fanned the fires of that fallacy, for many, many years. It's now biting me in the as, as they just assume I will conquer any medical issue thrown my way! 😳”

Oh I know that one very well. Especially when daughters have serious medical issues to deal with as well. I think sometimes we have to remind ourselves that we’re not invincible, and stop being all things to all people! X

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Yes, peace_lover, You are 100% correct! In retrospect I know I was trying to teach them to be confident and show them what an strong, independent woman looks like... but there's one thing being strong and independent and a totally different thing to act like SUPERWOMAN and convince our kids you're invincible! 😳

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Sorry - thought I was being sort of funny warning you about potential dining chat!

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Ahhhh, no worries. Messaging and humour... never works out like it does in our heads! 😬 sorry

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It could be worse. When was I was an archaeologist, dinner table conversation ( or rather trestle table in the middle of a desert..) was usually along the lines of “the worst toilet I have ever used..”

We usually waited til dinner was over. The Indian trains usually won.

Strange how these threads morph into something else isn’t it? 🤔😀

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OMG! That made me laugh!!!!!! Thank you!!!!!! Luckily I have a strong stomach and pretty much everything is "fair game," for discussion!

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You wait til he does the dissection table stories... 💀🍖🔪🔬

It’s not right, I couldn’t find an entrails emoji, damn I shall have to complain.

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It's surgery we enjoy ... German TV does medical programmes with full-frontal ops and somehow they always coincide with us having dinner...

And yes - loos I have known...

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Hahahahahahahaha! Maybe not on spaghetti night!

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Lost in translation 🤔

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Yes, odd that one, I am known to be an agony aunt to family and some friends....but when it comes to sorting me out.....well, you know the rest, and will be facing an Endo specialist next week, and I`m now being ask so have you got all your questions ready.....err....no, I`ve never faced one of those before, and have a feeling it will be ...why are you here?....but others think I will get it all sorted...oh dear....

Lucky you to have him in the family....he might just come in handy!!

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Oh let's hope they know why you are there!!!! ...but always god to have questions lined up. Good luck and let us know how it works out. ..but remember, "don't let the bastards get you down!"

He might come in handy, I hope I can last long enough to see him qualify and practice! : )

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You will....but there is nothing better than hearing how a patient feels with a condition...and one that the system let down....he is a lucky to have you as him!....

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Ps....the bastards won`t get me down....I `ve dealt with so many in my life....I can deal with them....it`s practise!....

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..and practice makes perfect!

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As we discussed before Melissa. My daughters are exactly the same. Always tried to put on a brave front and when asked how I am - always the answer ‘ I’m fine thanks.’ It’s my own fault.

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Yup, as I said "I created the monsters!" 😈 👹

Hahahahahah

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Suppose I don’t want them to see me as a doddery old lady. I looked after my frail mother for 16 years and can remember saying to my brother that I look like I’m coping but inside I’m screaming. I want to be a fun mum. 🤡🤡

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Of course... I do to! It doesn't help that in my head I AM the fun mom who is like 35!!!

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Me too Melissa!! Even though I am heading for 70. 70 is the new 50 - right?!! Lol.

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EXACTLY!!!!!

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Am with you on that one Mamici!!! My sons still think I'm a 30 year old PE teacher!!

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🤣🤣🤣 That was funny!!!!!

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What a lovely young man! Love that you taught him about it and that he listened. Good thing to keep in mind for all of us...that maybe the next generation of docs will listen if we tell them!

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From your mouth to God's ears, yogabonnie!!!!!

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Yea, for the next generation of doctors! Happy that he called and listened to you Melissa. 🤗🤗

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Me too MaryA_.... me too! It was the best feeling!

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This is wonderful Mamici.you have a lovely son in law.xx

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Thanks Grants148, I do.... I kind of knew that, but our exchange this morning really drove it home for me!

Colour me happy!

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That’s lovely mamici,you deserve to be happy xx.

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Ahhhhh, I think WE ALL DESERVE to enjoy numerous slices of happiness... the trick is to catch them when they present themselves.

I was thankfully paying attention this morning!

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hmmm “UK medical system” ... I think we all have good and bad stories but on the whole our system works pretty well , and I know I wouldn’t be able to afford to pay for the treatments I’ve had in my lifetime let alone while I’ve had GCA/PMR ...

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Oh, I agree!!! ...and those were my words, not his. I worked for the NHS and do not disagree that the "system works pretty well." He's becoming a doctor in "the system," so I doubt he would disagree either... it was just kind of cute that he felt obliged to apologise to me for previous misdiagnoses and for system missing the PMR totally!

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This warmed my heart!

I work with 3rd and 4th year med students. I've shared my illness-story with many of them. I tell them my mantra has always been 'Be nice to med students as you never know when they may be called on to treat you'. And then tell them about my 'health scare' in which I saw 5 specialities: Psychiatry (yep, a psychiatrist was the one that initially diagnosed my GCA. She's a friend.), an Internal Med doc, a Rheumatologist, a Surgeon, and an Ophthalmologist. And each one of them, I had initially met when they were a medical student. By telling them, I hope it strikes an interest in them to at least look up GCA/PMR. My Rheumatologist is a teaching physician, so I've also had some students join in my appointments. Usually a Resident/Intern, but every now and then I get a student.

You must be so proud of your son-in-law. Medical school is so rigorous. I'm in such awe of those that go through it. And how wonderful that he's taking such an interest in your illness -- and sharing what he's learning from you with the others. You never know - someday he might just save someone's sight by having his interest ignited by your journey. Stranger things have happened.

Thanks for sharing!

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Ahhhhh, I wrote you a long response and didn't hit reply, before I left page! Damn. I said I was happy your heart was as warmed as mine! and that it is so very cool you get to teach and tell your story to medial students... how invaluable is that!!!! And hat YES I agreed it is wonderful to have him interested and engaged! And the thought crossed my mind that this 15 minute exchange of questions and answers may very well save someone's eye sight or result in the RIGHT diagnoses the first time around! How cool is that! xxx

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I take my hat off to him. After reading a book called - ‘This is going to hurt’ by Adam Kay, which is extremely funny by the way, I was shocked at how many hours the students and the registrars put in. We are all aware of their long hours but this book really shocked me.

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My sister has given me This is going to hurt, for my birthday. She even got it signed by Adam Kay whom she met at the Hay Festival.

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That’s great. I’m sure you will really enjoy it.

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I have just read Too Many Pills by le Fanu, very interesting, so this is the next book on my list after the Jeremy Thorpe book I am reading at the moment, which is totally different!

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I'll have to check it out. Thanks!

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I couldn’t put it down!

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Wow! What a useful son in law. Wonderful you’ve been able to point him in the right direction so no one he sees will have to suffer the way you and so many others have in the past. Our son in law works for a large company who along with lots of other stuff manufacture top of the range power tools. My husband thinks he’s the best thing sliced bread and the workshop is stuffed with machines to do anything you care to do to a piece of wood. I love my son law, wonderful man, but to me having a medical expert in the family very useful.

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Hahahaha! too funny! ...about the power tools! And yes he a useful son-in-law, and that I've been able to point him in the right direction, but good on him that he bothered to even ask! I was quite impressed with that!

He has heard about my PMR/GCA nightmare, but I was so impressed he reached out again to get the facts right...

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How satisfactory. My son in law ( GP) kept spotting PMR after my diagnosis. Aussies have that benefit now.

As for daughters well didn’t you know that it’s your job to be invincible?

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I did. It is... and I'm trying! xxxx

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That is great SJ - and similar to how I have also 'educated' my GP - BUT isn't this also not 'good enough' and indicative of how our medicos - globally it seems - just STILL don't get sufficient or often even a basic education about PMR/GCA. Obviously doctors can and must also learn by (vicarious) experience but I am thinking how many of us will it take to be excellent 'familial educators' before they generally 'get it' ... well you know what I mean

Rimmy

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I certainly do. This Forum does a grand job of raising awareness. Amazing that it was started by 5 determined sufferers. Already I feel that the status of this disease has been raised. Doctors do look!

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I have just tried to like your great post three times, it kept coming up as dislike, if this shows up on your alerts please know it is a site thing or my device is suffering from sympathetic PMR related " brain fog!".

This is a great post , I am so glad to hear that there is progress going on to prevent the misdiagnosis that has happened for years.

Even if we charge to stalk your daughter's squeeze to his hospital to get the right help

( Don't tell him, I am sure it will be a lovely surprise!!😂😂)

I am not surprised he shows more interest than your daughter, there is nothing a medical student loves more than a person in their vicinity that they can use as a test mouse as they train.

Beware though, my friends daughter is training as a Practitioners Associate, and like me you may find yourself , trying to hobble off to escape them , when they suddenly pop up with another thousand questions and ask if they can prod you with stuff!

Thanks for the entertaining post, and again sorry , if my poorly tablet made it seem like I took huge dislike to your amusing anecdote!

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Hi Blearyeyed, if you move your arrow away after you click LIKE, it should update the LIKE total, and then change to DISLIKE in case you want to change your mind about LIKEing it. Trevor.

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Thanks , yes , I had liked it all is well with my electronic world , thanks so much for letting me know what happened.

A combo of the site not updating the like number after doing it and me not knowing what am doing, I would love to say it was a symptom but unfortunately it is not , moments of dullardary are all my own work!!

Have a good day

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Hi Blearyeyed, No, you're good! Once you hit the LIKE button, it defaults to Dislike or Unlike... it's just giving you the option to change your mind if you want to! You LIKED it, thank you.

I LOVE that he is comfortable using me as a Test Mouse! And I don't think I will ever tire of talking about this journey... Maybe, but I doubt it. It has consumed me now for 11 months and since it is so unheard of and misunderstood... I'll talk to anyone who will listen! Now if he starts asking what's it like to be "old and feeble," I may take offence!!!! 😤

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You have just found the invisible, mythical silver lining of PMR !!!

As we get older , the youths won't blame us for being old and feeble , they will just keep thinking of us as spring chickens with PMR or GCA. Forever young ....but a bit hobbley!!

You have to laugh don't you, as long as it isn't too hard, you don't tense your neck and keep your head straight .... But you have to laugh. 😁😁😋

Yes, the system was not displaying that the number changed just going to dislike , so I wanted to check as actually your post was one of the most cheering things I read this week and I absolutely love the dolly doctor photo!

Take care and have a great weekend , but lock your front door if the daughters bloke is about or you may wake suddenly to find him standing over you in the dark with a stethoscope and some proddy things. Tee! Hee!

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Good Man👨‍⚕️

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Yes, indeed!

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I was half way through a reply to you on another post & l ‘lost’ it! Will catch up soon. Hope you’re doing OK? xx

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xxxx

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He will make a great Doctor

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I think so... let's hope he does not get jaded or make compromises along the way!

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Its such a stressful job and so much responsibility

I think anyone that goes into Healthcare nowadays is very brave

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yes Rose... I give these people LOT of credit. there are so many oter jobs that pay more, are more glamorous, and are not as stressful!

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Sounds like a very fine young man...so keep schooling him as I am sure it will help many of his future patients and much of that credit will be due entirely to you.

Like you I have discovered that being the strong independent can cope with everything type of Mother can sometimes backfire just when you need that little input of sympathy/empathy.

I texted my son today, who is currently abroad, to tell him that my diagnosis of PMR had been confirmed. He responded...”OK good stuff...”.

Really? Think that might be code word for don’t want to think there is anything wrong with you.

Hope you are holding your own xxx

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*laughing* ”OK good stuff.” Too funny!

Yes it can and does backfire in out faces! Both my girls have no idea how unwell I am or that I'm getting old, or that I am not capable of all the things I used to be capable of... they still think I am Superwoman! I wish I were... but also even Superwoman has limits!

I am holding my own, thank you... even with all the ambiguity around my health! If I don't keep laughing, I will just cry... so!

I hope life is treating you kindly! xxx

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It’s the red lipstick - means you are invincible. You need to change to a pale insipid pink - sooooo not going to happen! Don’t you dare!

Superwomen do have limits but it’s difficult for our family to recognise when we’ve reached those limits and I think it scares them. We just need to give them time to adjust.

Failing which we can just throw a wobbler as we say in the UK....much love to you Melissa xxx

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( good stuff) that’s a ( right then ok ) from the son here . Got to put on the blooming cape again . Saving the wobbly for when it’s really needed .

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Hahahaha! Might just be the lippy! My current colour (just temporarily, mind you) is an Autumnal Black Currant/Raisin colour! ....with (Hey! Mrs Nails!) matching raisin coloured nails! Just in time for Halloween!

You're right, I think both my daughters are in denial since I became ill last year... they have never seen me down or out and in the past 11 months I have been both, in me, many times.

As a End of Life Companion and someone who is involved in "death and dying " issues and conversations, I talk to them (and my grandchildren) a lot about death and dying... but they shy away from those conversations too.

I will continue to prepare them for the inevitable...

Superwoman does have limits.

xxx

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Well my lovely raisin lipped glamour puss I do hope you are a very long way from the inevitable.

I do think GCA more than PMR might make you question your mortality because of the severity of the symptoms.

Your gorgeous girls aren’t ready to accept you as anything other than the titan you have been to them all of their lives. It seems they need a little more time to adjust to their new but still fabalyiss Mum xxx

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My girls, age 44 &41, were not really interested in PMR because it was hidden. However, they responded very strongly to Dad having heart attack 2 years ago. And again have responded to my hip osteoarthritis which means 2 hip replacements this year, and has me in a wheelchair or on crutches. So is it that PMR is unseen?

Thinking, would it not be good doctor training for students to come face to face with patients with specific diseases. There was a quiz show on UK TV this year, part of 70 years of NHS, where teams of doctors had to diagnose disease from real patients in 2 minutes. I really enjoyed it.

Valerie

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Hmmmm? That old, "...you don't look sick," adage!

I have often though what a WEALTH of information there is out here... not just PMR/GCA, but the cornucopia of illnesses with which people on HealthUnlocked are intimately familiar! Wouldn't it be amazingly beneficial (to all of us) to share that first hand experience (face to face) or even via Skype/FaceTime with young student doctors...

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Hi Melissa

Great to have a doctor in the family - although my brother who lives in another OZ state and is an ophthalmologist 'prefers' I think not to talk about familial illness if it can be 'avoided'. He at least warned me however when I first told him about my GCA to get to an ER fast if I ever had any visual disturbance.

So it is perfect to be 'asked' about your experiences by your son-in-law - he obviously realises already that your personal insights are invaluable to him 'understanding' this illness as well as he can - and THAT is a vital 'lesson' for all medicos to learn - ie the immense value of the 'personal' subjective experience ...

I am not surprised your daughters view you as such a strong woman Melissa - because you are - but we are all fragile and strong it's just what we project they see the most of course. My sons are similar in this way - although being quite different in many others - and even my brother called me 'indomitable' recently which surprised me somewhat. But what can you do - after all we want to be strong and know we aren't always - we are always inevitably both things at different times or even sometimes at once ...

Then of course it can be a fearful thing for our children to finally realise we are fragile and not indestructible ....

XX

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Hi Rimmy, Interesting about your brother.... is it because he feels he may not be able to be objective when it comes to his family?

Yes, I think I was quite taken back that my son-in-law thought that my "personal insights" would be beneficial and invaluable to him 'understanding' this illness." It's true of course but in this fast paced "do everything online" world I guess it surprised me that he took the time to ask about that 'personal subjective experience.'

And I know I've created the "monsters" in my daughters by not allowing them to see me weak or vulnerable, for all these years... they have only seen the strong, invincible Mom, so that is what they know. The duality of our strength and fragility is all too real, but difficult to accept.

Indomitable.... great word! Fabulous compliment! xxxx

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I think your daughters will eventually realise many things they cannot now know - and that 'we' also could probably not when we were younger ... cos I'm sure they have more than a few hoarded 'chips' off your 'block' Melissa - they just need a bit more 'vintage' (aka more life experience & 'time') - and maybe you saying to them sometimes that stuff is a wee bit 'hard' for you. Mind you - look who's talking - I know all too well the desire to protect my 'children' from any stresses they don't need - like the ones I have ... so yes it IS for us a conundrum

XX

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*laughing* Yes, look who's talking! I somehow cannot imagine you uttering those words.... any more than I can hear them coming out of my mouth! ...but you're right, we must, for their own good and to teach that ultimate lesson.... nothing is forever. Not even Moms.

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You’re so lucky to have him in the family, good choice by your daughter! And thanks for helping to educate him.

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My pleasure Ciar.... it is so easy to talk to people who are actually interested in the disease(s)!

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Melissa,

What a great story, thank you for sharing it with us.

Enan

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Melissa.............. CLONE HIM!!!!!!!!!!!!!

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Really!

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Hi, After 4months of no diagnosis from GP's, a physio who specialised in headaches at the hospital and neurologist my son who is a 42 year old anaesthetist diagnosed GC A and told me to see a GP ASAP as it was a medical emergency. GP was still not convinced until blood tests came back and then I was referred. So some, slightly older, hospital Dr's are on the ball. I must ask him when he was taught, became aware of GCA.

Good that your so - in-law is so interested.

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Wow jennifer15, that is so cool! You must have been so very proud! Yes, you must ask him when.where/how he learn about GCA.... I'd love to hear story!

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Sorry thought I'd replied....

You must have been elated and I am that it's being brought into the system, just hope it doesn't get lost! Maybe he'll decide to become a Rheumatologist!

Hope he succeeds in whatever he does - such a lovely future for the family - something to be proud of - and your daughter supporting the family too, I've been there, tell her she is a credit to all hardworking ladies! ...and there's nothing 'up' with the daughter issue, it's world wide! xx

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Ohhh thank you Telian!!!! On both accounts... daughter and son-in-law! xxxx

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That's fantastic!

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I know, right! : )

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Hi mamic1, I'm all behind like a cows tails.

Wonderful post, wonderful son-in-law. Best way to learn int it!

While I was an inmate the consultant sent one of his students to see me. I was told not to tell her what my diagnoses was. After numerous questions she admitted that she hadn't got the foggiest idea what was wrong with me.

Hopefully she has now.

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Hahahaha, yes, hopefully, she will never forget! As my son in law said, he will never miss GCA! 😉

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