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Re: Come out of hiding from Koshie to Tracie

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OMG!!! You got chicken pox at 26?!?! That must have been yucky! I had them at 16 during the '84 summer olympics in Los Angeles. My mom decided that if one kid had the pox, all should have it at the same time to get it over with. So when my sister came down with it, she made sure the rest of us got exposed too (there were 5 of us). My brothers and sisters and I still talk about that summer and the legendary fights we had while being cooped up in that house. I have a pox scar near my eye, I'm going to keep a watch on it to see if it changes any.One of my flare barometers is on the front of my neck. Its the scar where my first sarc bump showed up. It gets a little inflamed first b4 everything else - sometimes. I did so much to that bump to get rid of it b4 I knew it was sarc. So many creams,

so much picking, so many lotions. HaHaHaHaHa!!!Got over my complaining and took my first Plaquenil pill this morning. Thank you and Marla and Jackie for the insight on the med. When I'm being pouty and a big baby (now) the hypochondriac in me comes out. So, now I'm imagining that I'm experiencing some of the mild side effect symptoms. I'm getting over myself. Slowly but surely.I'm going to monitor how my body is reacting to the exercise more closely from now on. It's funny how I hate the exercise but love it at the same time. I have having to go to the gym, but once I'm there, I feel like a normal person working out like everyone else. Even if it's just for an hour or two. I take that back in a way, I've never been nor wanted to be normal and like everyone else. I like being weird and quirky and me. But I'm sure you know what I mean.Again, Merry Merry Christmas and Happy Chanukah to everyone. At work we can only say happy

holidays. I hate saying that, I mean really, Jesus is the Reason for the Season. Don't want to offend, but I hate denying Him in order to be politically correct.Enough of my ranting...Koshie "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington CarverTo: Neurosarcoidosis Sent: Sunday, December 14, 2008 9:42:31 PMSubject: Re: Come out of hiding from Naa Koshie to Marla & Jackie

Hello, Naa- how are you? We've not heard from you in a long time-- good to see you post.

Plaquenil is very benign when it comes to side effects, and it takes a few weeks to see it start working-- but I know it has helped my lung issues tremendously. I wasn't sure how much it was helping the systemic inflammation issues until I tried to stop it. The rebound inflammation was nasty-- so that proved to me that it was definately helping.

You know, I so get it-- having to do one more thing-- watch one more blood test, eyes, etc-- it does get seem to get all time consumming. I wish I had an answer..

Here is a link to a article you may want to share with the dermatologist.

http://www.sarcoido sisnetwork. org/documents/ July_Aug_ 2003.pdf

It's interesting, I've had a couple of scars from when I had chicken pox at age 26-- that always flared first before I went into a sarc flare. I've noticed that the two spots below my breast have changed texture and shape over the last couple of months-- so I need to tackle that issue soon. I too am just going nuts over thinking that this is one more thing.

Keep in contact, and let us know what's up,

Love to you,


NS Co-owner/moderator

From: Naa Koshie O. Mills <koshie127 (AT) yahoo (DOT) com>To: Neurosarcoidosis@ yahoogroups. comSent: Sunday, December 14, 2008 5:53:36 PMSubject: Re: Come out of hiding from Naa Koshie to Marla & Jackie

Thanx for your input on the Plaquenil. I have a confession to make and I feel kinda ridiculous admitting it. I have had the Plaquenil prescription filled for a few days and have been afraid and too stubborn to start it. I know, that sounds stupid, but the thought of having to monitor another sarcoidosis component makes me sad and pisses me off and scares me at the same time. While writing this, I'm getting over myself though, and will begin the med in the morning.Another question. I have a wart in my nose (ewwwwwww). Blocks my breathing a bit and bleeds sometimes. The EN & T doctor says its not cancerous but wants to have it removed in the new year. Since warts are caused by viruses and some theories say so is sarc to a certain extent, is there a known correlation between the two? Been doing some research, but thought I'd ask some folks who are in the

fight with me.Much Love, Naa Koshie

From: Marla Bramer <mebramer (AT) gmail (DOT) com>To: Neurosarcoidosis@ yahoogroups. comSent: Sunday, December 14, 2008 8:30:56 PMSubject: Re: Come out of hiding from Naa Koshie

Good to hear from you, I have been on Plaquenil for over 5 years now, it really helped my breathing and my skin in the beginning, my lungs are still good, but the skin not so.

I have to see the eye doctor every year, I guess Plaquenil can mess with the eyes, but my eye doctor told me that in 30 years he's only had one patient have to quit the Plaquenil. I take 200mgs in the morning and at bedtime. I hope you have as much success with it as I do.

Merry Christmas,


On Mon, Dec 15, 2008 at 2:24 AM, Naa Koshie O. Mills <koshie127 (AT) yahoo (DOT) com> wrote:

Hope everyone is having a wonderful holiday. Me and the children are getting ready for Christmas. I'm working like a dog so that I can get my own place separate from my ex. Thankfully we are better at being friends than romantic partners, but I am so ready to have my own. Hopefully, it will be in February.Been trying to get the doctor's at s Hopkins to wean me off the pred but they would not for various reasons. So, I weaned myself down to a lower dose in between appointments to see how my body would react. I know this isn't recommended, but... When I saw the doctor last Wednesday, I told him about the lower dosage and he decided to continue to wean me off and added Plaquenil. Any guidance anyone has on the use of Plaquenil would be most helpful.Also, after having a breathing test (result "normal" but decreased oxygen diffusion?), doctor recommended

an echocardiogram. I scheduled it for Monday. I'm nervous, but would rather know where I stand healthwise. This is a blow to my confidence right now. Have been able to exercise, still beautifully overweight, but loving how my body is responding.Anyway, I hope everyone has a wonderful Holiday Season. Merry Christmas, Happy Chanukah, Happy Kwanzaa, and Peace and Blessings and Better Health in the coming year.Much Love,Naa Koshie O. Mills

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

~ Washington Carver

-- Marla BramerIndependent Beauty Consultant Kay mbramer (AT) marykay (DOT) comwww.marykay. com/mbramer May the Lord bless you and keep you,May the Lord make his face to shine uponYou,And be gracious to you;May the Lord lift up his favor upon you and give you his peace.(Numbers 6:24-26)

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