Thank Goodness I rang

[Cairn]

A couple of weeks ago I was getting GCA symptoms back. So Rhumy put steroids back up to 30mgs. My CPr readings had rose from 1.8 to 16.5 (no where near the 184 when diagnosed in May 18). So I was quite happy but disappointed steroid was put up. Things really did not improve much so I bucked up courage and rang help line again as didn't want to cry wolf. Glad I did. He pulled me in immediately. Put me up to 40mgs steroid and put me on some chemotherapy drug called meta something or other to further suppress immune system. I had complained of fuzziness in left eye and he also managed to get me into eye clinic that afternoon

After lots of tests it seems my optic artery is inflamed putting pressure on optic nerve. I have some pressure in eyeballs that can turn to glaucoma if left untreated. Eye Consultant concurred med change correct course. Need to go for CT scan to make sure nothing sinister going on. Also have pressure in my head and blood pressure slightly raised. This was all very disconcerting but I am so glad I did the right thing. I am beginning to realise how evil this disease can be and is not to be messed with. I think I have reached the moment of acceptance but GCA will not overwhelm me.

[DorsetLady PMRGCAuk volunteer]

Good job you made that phone call - and the discovery of the optic nerve issue - it could have resulted in loss of sight if left any longer.

Good luck and please keep us informed.

[Cairn in reply to DorsetLady]

I will as it did give me such a reality check. I cannot believe how unwell I feel generally. I asked the rhumy about it and if I was making a fuss. He said I certainly was not and this is how the disease is with sufferers. My job is not to make life miserable for others and keep a positive attitude. I am learning to ignor comments like you look so well or just come out and have some fun. I do go out but on my terms making sure I rest beforehand. I am learning but it's taking me some time and hiccups.

[Cairn in reply to DorsetLady]

Just had call from hospital. CT s can booked for Sun 28th Oct

[DorsetLady PMRGCAuk volunteer in reply to Cairn]

Good

[Hidden]

Don't ever be afraid of crying wolf!!! There are just too many real things that can (and do) go wrong with us, it's always better to be safe than sorry! Hang in there!!!

[Cairn in reply to Hidden]

Thank you mani1. I know and appreciate I am being well looked after but feeling a little anxious at moment. I thought I could fight this but it's all kind of turned on me. I am feeling unwell with a heavy cold despite having flu jab a few weeks ago. Have failed the colon cancer tests they send in the post so that needs investigating and still hurting from a very nasty fall I had the weekend. Just not been my week and it makes me feel very vulnerable and I am usually a fighter just feeling a bit overwhelmed

[Hidden in reply to Cairn]

Ohhhh man, when it rains, it pours... doesn't it? I am so sorry you are feeling anxious. That happens to all of us at some point. The walls just start to close in and we feel suffocated and anxious... I found this and it resonated with me. Maybe it will resonate with you too:

“No pain that we suffer, no trial that we experience is wasted. It ministers to our education, to the development of such qualities as patience, faith, fortitude and humility. All that we suffer and all that we endure, especially when we endure it patiently, builds up our characters, purifies our hearts, expands our souls, and makes us more tender and charitable, more worthy to be called the children of *God . . .

~ Orson F. Whitney

* Feel free to replace "God," with "Buddha, Allah, Ganesha, Confucius, Mother Nature, The Powers That Be, Krishna, etc. etc. etc.

You will get through this.

[Cairn in reply to Hidden]

God is absolutely fine. Known him a while xx

[Hidden in reply to Cairn]

Cool.

[SheffieldJane in reply to Hidden]

Sorry my irreverent remark was posted before your lovely Orson F Whitney quote but the mischievous nesting put them together.

[Hidden in reply to SheffieldJane]

Hahahahahaha, no worries! I loved the overall gist of his quote, but not the end when he tied it all together with being "God's children," and the part I deleted about being more like "our Father and Mother in heaven.” As long as Cairn wasn't offended, which I don't think she was, it's all good! xxx

[Cairn in reply to Hidden]

No I am not offended but I asked if you were Christian as I am A lot of people have been asking me why I am so ill when they consider me such a "good" person. (I am not trying to blow my own trumpet here). The thing is no one is immune from trouble and wondered how you felt about it. When you profess to be Christian I find people are looking at you to see how you respond to what is thrown at you and I have had lots thrown at me over the last 8 years. But I do get tired of it all sometimes and feel I have just go and find my happy place by myself so no one can see any pain. This is what is so good about this site you can express your pain and not be judged.

[Hidden in reply to Cairn]

...and that is partly the thinking (not yours, theirs!) that drove me away. "Why are you so ill, you're such a good person/Christian." Sorry, but that just a stupid thing to think or say! It's like saying Katrina devastated New Orleans because it's such a sinful city... again sorry, but I think that's rubbish! I respect your beliefs and would fight right next to you for your right to believe.... I would also fight for a atheists right to believe what they believe.

[Cairn in reply to Hidden]

Yes one friend even told me I had brought this curse on myself as I often complained about how my dad did my head in. He was suffering from Alzheimer's and dementia very verbally and physically aggressive as well as inappropriate sexual comments. It was a horibble time for me. Could not do anything right for him. And I don't know how many times we had to unblock toilet because he had stuffed Carrie bags down it. Or how many times I got down on my hands and knees to scrub poo off the floor. Yes he did do my head in. I wonder how she would have felt about those chores. People can be so stupid and thoughtless sometimes when making judgements. I try not to let it get me down. But it's dissappointing

[Hidden in reply to Cairn]

Ohhhhhh Cairin, I am so sorry that person (I would NOT call them a friend!) did that to you! How terribly wrong and so unfair! It is VERY disappointing, especially when the stupidity, thoughtlessness and judgement comes from a Christian... I'm sorry I expect more! WWJD???? Indeed!

[Cairn in reply to Hidden]

What tickled me was she claimed God had said it. Sudden change of attitude as when in hospital Ivwas so scared until I felt his presence. Never mind once I am over this flare (apparently as that’s what the rhumy called it) I can move on again. I was wondering what a flare was lol. Boy do I know now lol

[Hidden in reply to Cairn]

Oh, if you're having a flare, you'll know soon enough! I'm so sorry... know that it will pass. Xxx

[Cairn in reply to Hidden]

How long do they las?

[Suet3942 in reply to Cairn]

You should have struck them off your friend list. What an insensitive thing to say to somebody. ☹️☹️

[SheffieldJane in reply to Hidden]

Stop fighting it man. God definitely wants you for a sunbeam. 😘

[Cairn in reply to Hidden]

You a Christian?

[Hidden in reply to Cairn]

Ummmm, no. Not any more.

Like a Facebook Relationship Status ... "It's complicated.'

[Cairn in reply to Hidden]

Just saw your response that's a shame. But there are a lot of hurts out there. Tell me about it LOL

[SuziCutie in reply to Hidden]

Has to be Almighty God for me. Couldn’t endure this trial without knowing His presence with me

[Cairn in reply to SuziCutie]

Hello patters. Where are you in the world. I am in uk

[SuziCutie in reply to Cairn]

Beautiful Wales. Where do you live?

[Cairn in reply to SuziCutie]

I am in Wiltshire.

[SuziCutie in reply to Cairn]

Not that far from each other then.

[Cairn in reply to SuziCutie]

My Gran was Welsh. From the Rhonda

[SuziCutie in reply to Cairn]

The valleys are beautiful . I am a city girl, Cardiff.

[SheffieldJane in reply to Hidden]

Deviating slightly. Have the clowns at your clinic given you an appointment yet, Melissa? 🤡

[Hidden in reply to SheffieldJane]

Hehehehehe. Hello my Lovely! YES! Next Wednesday! 👏🏻👏🏻👏🏻

[altywhite]

Acceptance is key!! Well done for making the call, and good on your rheumy for acting quickly. You are still relatively early in the disease process so try not to be too despondant about the increase in pred, think what could have happened if you had just left it. Some days/weeks/months, even, it does make you feel really poorly but you will get through it. It took me a lot longer to accept it...but I didn't find this forum as early into my diagnosis as you did. Good luck.

[Cairn in reply to altywhite]

Thank you altywhite. Just all a bit confusing

[bunnymom in reply to Cairn]

Yes it is 2 and a half years for me and I am still trying to figure things out. It is all very baffling sometimes.

[altywhite in reply to Cairn]

Yes it is...and probably will be for a while longer. I yo-yo'd on the high doses for about a year. I felt like I had flu for a lot of the time, without the specific aches and pains. You just don't realise how poorly it can make you feel sometimes. But trust me, it will get better. You control the symptoms with the pred, however much you need, and it sounds like your rheumy will be responsive to your needs after this. I'm over three and a half years in now and am actually feeling like I'm getting somewhere...getting down to 6mg, slowly!!

[bunnymom]

Good for you. I'm glad you were quickly and appropriately treated. Acceptance of our new normal does make life simpler. 😊

[SheffieldJane]

Thank goodness indeed! Exemplary treatment. Acceptance is such a relief and, I think your symptoms become much easier. 🙏

[Cairn]

I hope so this is hell

[AndrewT]

Dear Cairn,

I've 'said' this, in other answers/ contexts, and you have just 'born this out'....NEVER be afraid, to ask your Doctors/ consultants, if you Honestly Feel 'Something' is wrong. Yes, many times, there isn't a problem, but, as you have just proved, there IS always THAT time...… I'll bet, almost anything, that you ARE glad that you followed 'Your Instincts' Cairn.

I remember some years ago now, absolutely Insisting, on a friend Seeing Her Doctor....I knew something was Very Wrong- despite her protestations. It was a Slipped Disk, that was, pressing on a nerve- that was a Nerve, in her Spinal Column. She had been putting the numbness, in her feet, 'Down' to the Cold Weather.....!

My only experience, of eye problems, was about fifteen (or so) years ago. I developed Cataracts, as a direct result of all the Medication I was Put On. They were successfully operated on and, since then- touch wood- I have had, very few, problems. I have had, to have, Reading Glasses, ever since. I had a, very slight, change in the Prescription last time. Do I still use, the Old pair? I'm wearing them NOW actually! I was also given a pair, for Middle Distance but I don't use them- the Doctor said that, they were 'For Clarity'.....At least I don't have to Pay, for my glasses.

Yes you ARE, VERY right, about this Condition/ Disease, being a 'Sneaky One'. Not just Sneaky but, in actual fact, 'Down Right Evil'....That said we ARE all still, very much, ALIVE! Yes we ALL do, have our Problems, but we don't, very often, complain. In my case to still be ALIVE, well over Twenty Years, since my Mother was told 'That I wouldn't last the Hour' is, to my mind, quite an achievement!

Do I believe in GOD? Yes, I do, VERY much so. Do I regularly attend Church? Yes, I do, I was Confirmed- in June 2016. Do I believe, that my Faith, has Helped me? YES I DO, VERY MUCH INDEED!

Anyway, I think, that I have Drambled On, quite enough now. I am sending you my Prayers, and Best Wishes Cairn. I hope that, now you are being taken Seriously, 'things', start to, Improve for you.

Kindest Wishes

AndrewT

[Cairn]

Thank you Andrew. I am spiritually in a good place but have to actively avoid those encounters that may not be helpful. It's good to be zealous but we must also be responsible for what they believe God is saying to them. T he God I know is wonderful compassionate quick to bless slow to get angry. Never has let me down always encouraging and has never let me down. This is just another trial God bless

[Mks9558]

So glad you did ring! Hope you are feeling better soon!

[gifford7]

re: "pressure in eyeballs that can turn to glaucoma if left untreated. "

I have a narrow-angle eye condition that precludes full dilation. I saw the glaucoma specialist earlier this week; eye pressure 13 in both eyes, OK, but gonioscopy indicated i need to have an iridotomy in the left eye[the eye which lost upper half of vision in GCA attack last year]. I am scheduled to have the iridotomy oct 30 [left eye only]. One of my sisters also has the narrow-angle condition and had the iridotomy done in both eyes [laser makes a hole in the iris to relieve pressure]. glaucoma.org/treatment/lase...

[Cairn]

Eek mine is 25. And I can feel pressure in eyes and in my head hence need for CT scan. Thanks for reply very helpful. I am having trouble focusing. Everything fuzzy at moment