Re: Come out of hiding from Naa Koshie

[Guest guest]

Mrs. Claus, the Pillsbury Doughboy, snowmen, Webbles wobble but they don't fall down-- yep, they're my heros!!!

I just keep telling there is more of me to love!

Lot's more...

Group hug,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Sunday, December 14, 2008 5:22:54 PMSubject: Re: Come out of hiding from Naa Koshie

I am on Plaquenil, and Predisone. Along with that I take Methotrex once a week. I would love to go off the predisone but I am afraid the swelling will return. I only take 10 mg a day now but with the plaquenil the weight just won't go away. I have gained about forty pounds and I hate it. My nuero said until I am off the predisone all together the weight will be a problem. Damn I was only 130 when I came home. YaYa rolly polly. Well Mrs. Santa is chubby so am I. LOL

Happy holidays to all and prayers for everyone.

Jackie

Re: Come out of hiding from Naa Koshie

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

[Guest guest]

Normal with decreased oxygen diffusion-- hmmm, that means that your body has to compensate when you start doing any exercise to keep the vital organs functioning. It's important to watch that-- the diffuse lung capacity-- and see if you find more tingling and numbness when you do exercise. IF so then it's prudent to talk with them about supplemental o2 when exercising (or grocery shopping.)

Getting an EKG is important to make sure you're not developing pulmonary hypertension where the heart becomes enlarged.

Keeping track of the baselines are a good thing.

Take care, love to you,

Traciie

To: Neurosarcoidosis Sent: Sunday, December 14, 2008 4:24:33 PMSubject: Re: Come out of hiding from Naa Koshie

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