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Roberta - Photo chat

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12 years 9 months ago #34383 by CindyL
Replied by CindyL on topic Roberta - Photo chat
Hey Sandi, what's the word on the photo's you submitted for the show?

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12 years 9 months ago #34384 by CindyL
Replied by CindyL on topic Roberta - Photo chat
This is Chippy, my latest visitor to the feeder. I hope it comes through ok!

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12 years 9 months ago #34385 by CindyL
Replied by CindyL on topic Roberta - Photo chat
Sunset taken last week.

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12 years 9 months ago - 12 years 9 months ago #34386 by CindyL
Replied by CindyL on topic Roberta - Photo chat
This was taken the same night from the ferry.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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12 years 9 months ago #34391 by Sandi
Replied by Sandi on topic Roberta - Photo chat
Those are really pretty, Cindy!

I haven't heard anything yet. They have until August 1st to notify applicants. Luckily I have a lot going on, so I haven't been thinking about it much.

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12 years 9 months ago #34396 by CindyL
Replied by CindyL on topic Roberta - Photo chat
Thanks, Sandi! I'm kinda proud of them. I took the same pictures with my cell phone and you'd never know the difference. I put the one taken on the ferry as my wallpaper on the phone.

I've been wondering what the word was. Glad you're too busy to worry. Let us know when you hear something!

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12 years 9 months ago #34609 by RHofm50129
Replied by RHofm50129 on topic Roberta - Photo chat
Here's my grandsons on Pirate Night on the cruise.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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12 years 9 months ago #34639 by Sandi
Replied by Sandi on topic Roberta - Photo chat
Roberta! You're back! I hope all went well and I hope you had a great time!

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12 years 9 months ago #34686 by RHofm50129
Replied by RHofm50129 on topic Roberta - Photo chat
Yes, all went well. Very HOT. Lord, I hate to sweat. The doctor had said to stay on 10mg til I got back, but I decided a month on 10mg was enough. I am sick of being bloated. So I started alternating between 5 and 10 on the way home. Had a blood draw (3 sticks this time) and my count dropped from 407 to 330. Don't know if I should be fearful of that drop or not. Don't know if the 407 was a fluke or not. I had been running around 300-330 since early May.

So I am to continue on 5/10 for another week, then all 5's. I hope I don't drop more and have to return to 10's or more. My wrists are too swollen for me to wear a watch. My rings are long gone. I have to wear anklets because my ankles are so swollen, and my face looks like a doughnut. I thought that stuff might go away as I reduced steroids. I have also gained 20 pounds I definitely did not need. When does this stuff depart?

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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12 years 9 months ago #34690 by Sandi
Replied by Sandi on topic Roberta - Photo chat
It will go away slowly. Watch salt and sugar intake because those make it worse. When you get to 5 mg's, it should all really start to fade. It will take a few weeks/months. I have a pumpkin face from taking it for so long too. I forget what I really look like.

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12 years 9 months ago #34694 by RHofm50129
Replied by RHofm50129 on topic Roberta - Photo chat
It was rather distressing when we had pictures taken and my face looked so huge. Depressing. I admit I teared up a bit. I hadn't really seen it in that way before. Here we have Ewan, Liam, Allen, and bloated Grandma. Bloated Grandma is grateful for the help steroids provided, but she would rather they went away without taking the platelets with them.

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12 years 9 months ago #34699 by Vdeutsch85
Replied by Vdeutsch85 on topic Roberta - Photo chat
Roberta,

I am glad that you had a great trip and glad your counts are good! That prednisone is such a catch 22.... Brings on platelets but brings on yucky things as well!

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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12 years 9 months ago #34700 by Sandi
Replied by Sandi on topic Roberta - Photo chat
It's temporary.

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12 years 9 months ago #34712 by jeffrey71
Replied by jeffrey71 on topic Roberta - Photo chat
Roberta,

It will fade away. It stinks now but it will. You did better than I did. I gained 51# it is coming off slowly. Don't let it get you down. Glad you had great trip. Those grandkids love you prednisone and all! You counts are my envy! Right now I am planning on the Tri Indy Triathlon on Aug 4 downtown. My wife is volunteering at it too.

Ladies you all look great!

Jeffrey

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12 years 9 months ago #34741 by RHofm50129
Replied by RHofm50129 on topic Roberta - Photo chat
You live near Cincinnati, right? We live near Indy but I can honestly say that a marathon does not appeal especially in our current heat. It is just awful.

I guess my biggest worry is that my platelets will tank once I get down below 5 or when I stop steroids and then I have to start all over again on big doses.

I have lived long enough to know that the things that are bothering you terribly at the moment will eventually be in the past and will stream out behind you until there is little to see of them or remember of them. I hope ITP will be that way. Some people suffer so from it.

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  • Melinda
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12 years 9 months ago - 12 years 9 months ago #34744 by Melinda
Replied by Melinda on topic Roberta - Photo chat

RHofm50129 wrote: It was rather distressing when we had pictures taken and my face looked so huge.

The photo of your grandsons as pirates is great!

I know what you mean when you said it was distressing having photos taken and your face so huge. When I came out of "remission" back in 2002 thanks to a tetanus booster it was 2 months before my son's wedding - the hematologist grabbed her prescription pad and I told her right then don't because I will not take prednisone and look like the Pillsbury Dough Boy for my son's wedding! Any bruising would go nicely with the color of dress I was wearing for the wedding. Ended up with 1 WinRho IV and that put me into another "remission" and I've had decent counts since.


You are going to be just fine - and your grandkids will remember the great trip, not that grandma was bloated :)

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12 years 9 months ago #34753 by jeffrey71
Replied by jeffrey71 on topic Roberta - Photo chat
Roberta,

No I live up by Fort Wayne and the Triathlon is downtown by White River Park.

Jeffrey

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12 years 9 months ago #34784 by RHofm50129
Replied by RHofm50129 on topic Roberta - Photo chat
My grandsons were far more concentrated on Disney than me, thank God. But I feel like a parade balloon. I was fat before this started. Now I am fatter. I did not need an additional 20 pounds! Hopefully, we will be going to Germany for the Christmas markets in November. I don't want to scare the Germans or make anyone talk about fat Americans.

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  • Melinda
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12 years 9 months ago - 12 years 9 months ago #34801 by Melinda
Replied by Melinda on topic Roberta - Photo chat
I wanted to get a t-shirt made that had on it:
I'm not fat
I take prednisone
We were in Germany not long ago - what makes you think all Germans are slim and trim and the ideal weight? ;)

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  • Melinda
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12 years 9 months ago #34803 by Melinda
Replied by Melinda on topic Roberta - Photo chat
Cindy your photos are great - can't believe you took that one with your phone!

Love Chippy - sure wish I had a Chippy instead of Damnbunnies [that's a special breed of bunnies that come into my back yard and eat my flowers and jump up into my raised planters to eat the vegetables I'm trying to grow - last year was the first year they got into the raised planters - and dig up the grass so they can lay their fat bellies on the cool soil and leave little poop balls in the grass & on the patio and think my back yard is a Bunny Bordello...].

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12 years 9 months ago #34807 by CindyL
Replied by CindyL on topic Roberta - Photo chat
Thanks, Melinda! I was surprised at how well they turned out on the phone too.

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12 years 9 months ago #34810 by RHofm50129
Replied by RHofm50129 on topic Roberta - Photo chat
I've been there, too, and mostly I was surprised, considering the massive mugs of beer that they down, that they were not fat for the most part. Whereas a large percentage of us are!

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  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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12 years 9 months ago #34871 by dru
Replied by dru on topic Roberta - Photo chat
Roberta,

Glad you had a great time! Your counts are great. When I'm in remission my counts range from 250 to 420 and vary alot. I would not worry about the drop from 410 to 330. You should gradually lose that extra weight and the bloated feeling. It takes a while after going off to get back to normal.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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12 years 8 months ago #35137 by Sandi
Replied by Sandi on topic Roberta - Photo chat
I got a letter today from the Art Center. One of my photos was selected for the Exhibition. It was my first shot ever at a Gallery, so I'll take it!

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  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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12 years 8 months ago - 12 years 8 months ago #35139 by dru
Replied by dru on topic Roberta - Photo chat
Congrats Sandi!

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  • CindyAnn
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  • Diagnosed Jan 10, 2008. Rituxan treatment in May 2009. Treated with Prednisone off and on until 08/23/17 - 12.5mg Promacta as of 10/22/17
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12 years 8 months ago #35141 by CindyAnn
Replied by CindyAnn on topic Roberta - Photo chat
AWSOME !!! :cheer:

And by the way - love your new pic - you look great!

Cindy Ann

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12 years 8 months ago #35252 by jeffrey71
Replied by jeffrey71 on topic Roberta - Photo chat
Sandi,

So proud of you and happy for you!

Jeffrey

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12 years 8 months ago #35257 by ania
Replied by ania on topic Roberta - Photo chat
Fantastic news! Good work Sandi!! Yay! B)

Ania
Ania

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12 years 8 months ago #35264 by CindyL
Replied by CindyL on topic Roberta - Photo chat
Way to go, Sandi! Which picture was it?

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