GCA Flare~~ status and explanations💞: You are ALL... - PMRGCAuk

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GCA Flare~~ status and explanations💞

Grammy80 profile image
27 Replies

You are ALL just an awesome army of encouragement and support. My state of mind is rather unusual for me. As a child, if I had an upset stomach, my mother would put ginger ale in a glass and stir it with a spoon until all the bubbles and carbonation were gone. I feel like flat ginger ale.

Yesterday, Monday for me, I had my visit with the rheumatologist. The inflammation of this disease of ours (blessing never to be alone) has swollen the optic nerve and nerve head of my good eye. The optic disc is also swollen, which is why I've lost a bit of vision. I can still see, for sure. It just seems hazy, and I do notice the loss of peripheral vision, too....but it's not a big deal. My doctor felt that the neuro-ophthalmologist had done exactly the right thing by immediately ordering the pulse therapy. The fact that they are working together so well makes me feel very fortunate. It is possible for the vision to return as time passes, too. I'm taking 60 mg of Prednisone per day. I'm happy that it is there for me, but it puts me in low gear ~~pred-head makes me feel like I had all those glasses of wine I denied myself.

I'm all about a positive attitude; I'm not depressed, just subdued for me; sometimes, I feel like a spectator. If you were around me all the time, I can be 'over-the-top' with enthusiasm. For now, I am strictly relaxing and responding! to my body...if it wants to be awake until 3:00 am...or sleep at 1:pm....eat...I say, "OK, boss." My blood pressure is excellent, and that is a good thing. My husband has been wonderful. This flare roused his curiosity about GCA (finally), and I'm glad he's helpful. With his dementia and my 'head' we are a pair...but it works.

I'll be seeing the neuro-opthalmologist on the 20th, next Wednesday. The rheumy said I'd be seeing him (N-O)more frequently since he has the equipment and expertise. It will be back to the rheumy in one month...oh, he (N-O) also increased my Gabapentin to 300mg, four times a day. That improved my vision during a flare a few years back. I believe the key is to chill out and focus on getting the swelling down and hopefully avoid additional vision loss and maybe recover some of what appears lost at this point in time. This is possible over a 3-4 month period. Even if things stayed just the way they are, I would be thankful.

Enough about me....a big thanks to each of you~!!💞🫂💞

(It is almost 10 pm, Tuesday eve)

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Grammy80 profile image
Grammy80
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27 Replies
Temeraire profile image
Temeraire

Aww bless you Grammy. You are one amazing lady. Sending hug 🤗

Grammy80 profile image
Grammy80 in reply toTemeraire

Got it...! 💞

123-go profile image
123-go

I take my hat off to you, Grammy. 💖

Grammy80 profile image
Grammy80 in reply to123-go

....purple hat?💞

123-go profile image
123-go in reply toGrammy80

Of course 💜.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Sending hugs and best wishes as always… 🌸

Sophiestree profile image
Sophiestree

wow, you have an amazing attitude to all this when it is such a worry. Let's hope it improves over time and you're back to where you were. I'd say loolook, after you, but it feels like you are which is great!

Grammy80 profile image
Grammy80 in reply toSophiestree

I'm not so sure I'm amazing; I just know I don't need to add stress. OH, I stressed and then had to have a talk with myself. Of course, I worry, I just try not to let the worry run me. (I do a lot of talking to myself.😜😜💞

Fatsiajaponica profile image
Fatsiajaponica

Hi Grammy, thank you for updating us, it seems that you are very special to this forum and the people on here. So glad that you and the medics got on to this quickly. Sending ❤️

Grammy80 profile image
Grammy80 in reply toFatsiajaponica

I can never fully express how special this forum is to me.....! It has shaped my attitude and given me knowledge....and backbone to speak-up to the Doctors. For this flare, my blood tests were fine. Everyone on here gives of themselves for others. Even though I am on Actemra the CRP will elevate...and mine was normal. Thanks💞

montebello profile image
montebello

We're all with you, cheering you on.

Grammy80 profile image
Grammy80 in reply tomontebello

💞

Plantmad profile image
Plantmad

I admire your positivity Grammy and hope there is some improvement soon.

Grammy80 profile image
Grammy80 in reply toPlantmad

Thanks, right now I'm happy to hang onto the status quo~! and hope in a few months for some improvement.💞

HeronNS profile image
HeronNS

It's great that you're getting the care you need. Thank you for updating us. Now, just try to relax. Drink fluids and relax. Your job now is to be a good patient and get well!

Oh, just double-checked my calendar. The 20th August is Tuesday.

Grammy80 profile image
Grammy80 in reply toHeronNS

Thanks, for sure.....after reading your response, I checked my Google calendar and my appointment is Tuesday...my head was fixated on Wednesday~!! 💞

HeronNS profile image
HeronNS in reply toGrammy80

I'm not on any pred anymore, so not even an excuse, nevertheless I was thinking next physio appointment was Monday, but it's Tuesday! But I would have been early, not missing it ;) Checking your date is what cleared my head for my own appointment!

Sending a big hug to you 🤗 x

Grammy80 profile image
Grammy80 in reply to

Thanks....💞

Cobalt2sister profile image
Cobalt2sister

Oh Grammy, let me be one more to send hugs and all the most wonderful healing for you. You are a very special person.

Grammy80 profile image
Grammy80 in reply toCobalt2sister

I'll take that hug💞

ChrisBeeLoop profile image
ChrisBeeLoop

Oh you sound so positive! Much love to you and your husband. Keep on trucking!

Grammy80 profile image
Grammy80 in reply toChrisBeeLoop

I'm a realist..I have my 'down' time as I work toward acceptance and try to really feel what I believe will serve my body best~! I lost the 'control battle' quite a while ago... I had a decent day today...sleeping and listening to a wonderful book. Thanks💞

Pixix profile image
Pixix

Sending huge, gentle hugs! S x

yogabonnie profile image
yogabonnie

Hope all is better and better and love your attitude !!! thanks for your comment on my thread. about the devil you know.... exactly!!! thanks!

Grammy80 profile image
Grammy80 in reply toyogabonnie

There is nothing like wrestling a 'familia tiger'~! At least we know how to position ourselves...let's face it....there is just a certain amount of uncertainty we must incorporate into our lives. No, Bonnie...never made it as a knitter.(too tight, too loose) I used to quilt a lot...and this year I started crocheting again and will again, again. 🧶💞

yogabonnie profile image
yogabonnie

also did you knit that awesome sweater you are wearing_?

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