checking in

[Guest guest]

Hi Cherisse, That's one of the big questions, losing the prednisone weight? I just read a post that said she lost all her steroid wt. that is awesome, I think many of us struggle with this, I have lost some of the weight,

but I am trying, I have only lost like 5, only to gain back 10. But then I had a liver Bx and was told I had a " fatty liver " , and needed to lose " 10% of my body wt. in 6 months " Well it's been 5 months and

I've only lost 1/2 the weight. It is a difficult thing to do. I also think it is harder, as we find ourselves home more, which at least for me, means grazing all day, and that's not on grass! It's important to learn to live with the Sarcoid, that means life style changes,

job change or maybe no job, this is difficult if we have worked all our life It is better to learn to live with it, not that we shouldn't be treating it, yes, anyway to make life easier is important, and that is

living with it too. Blessings, Marla

Hello everyone just a little check note.The last time I saw my neurologist was the 2nd of December, a he decided to drop my steroids to 7.5 mg, down from 10 mg. When I did drop the steroids I was experiencing dizzy spells and headaches which I hadn't had in a while. But Im really scared because this year it will be 2 years since I have been on steroids, and sometimes it makes me think that maybe I might be on them forever or even life. I wish this monster will go away

Has anyone lost any weight whilst on steroids?From Cherisse

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.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)

[Guest guest]

I'm sorry I haven't been around much, life is just going too fast, and sometimes too slow. I've been trying to stay up with birthdays and new members, if I missed you, Happy Birthday and welcome.

Our furnace went out Friday at about 5:15 no kidding, and my husband is one that does everything himself, so we had almost no heat until today around 6pm. We had 2 space heaters, and I have 2 electric throw blankets and an electric on my bed, so

was all wrapped up and sat in front of the space heater, but still cold, (except for the occasional hot flashes, never thought I would enjoy one of those,LOLThis really zapped me of energy, The pain was not as bad as feared.

I am on Remicade now, finally after that year of fighting, so I get my infusionevery 5 weeks, and for the most part I am doing really good. I have been trying to get caught up with my business as I have to put the taxes together \

now, so we can get them to the tax person, since I am terrible at paper work, this time of year is not fun for me, I have to put the whole year together in just a few weeks, my own fault but not fun. So I haven't been around to help out and I'm sorry,

I still do not have my tax information ready, so will not be around much still, but know that I keep you all in my thoughts and prayers, and wish I could be here more. This group is so blessed to have so many wonderful people here to help each other.

And Tracie is the glue, even when she says she's tired she still checks in and getsback to you all, we are blessed to have you Tracie. Good to hear Rose back too, you were missed! And good to hear from you too Ron, I hope some day to meet you all!

Take care and God Bless, I hope you have a warm, as I don't take that for granted anymore, and pain free day, week and forever, Marla -- 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)

[Guest guest]

Hi Marla, right now it is still in the planing stage but I will let u know when I have definite appts, it may be all done on Thursday Take Care see u then Matt Hi Matt, That's a Friday, I will keep the whole day open for you, so call me when you know the time you will be in town. Will be good to see you again! Marla On Sun, Feb 8, 2009 at 10:25 PM, Mathew Cohen <chapmac (AT) gmail (DOT) com> wrote:Will do, have my appt on the 29 of April thru may 1 so hope to see u around then, MattHi Matt, I should be here, at this point of no plans as na is still in school then, so let me know when you are passing through. Love to see you, Marla On Sat, Feb 7, 2009 at 1:52 AM, Mathew Cohen <chapmac (AT) gmail (DOT) com> wrote:HI Marla, I will be going back to NJH on the 29 of April and would love to meet up with u again if u are going to be around. Hope all is well with you, Matt in SeattleHi Cherisse, That's one of the big questions, losing the prednisone weight? I just read a post that said she lost all her steroid wt. that is awesome, I think many of us struggle with this, I have lost some of the weight, but I am trying, I have only lost like 5, only to gain back 10. But then I had a liver Bx and was told I had a "fatty liver", and needed to lose "10% of my body wt. in 6 months" Well it's been 5 months and I've only lost 1/2 the weight. It is a difficult thing to do. I also think it is harder, as we find ourselves home more, which at least for me, means grazing all day, and that's not on grass! It's important to learn to live with the Sarcoid, that means life style changes, job change or maybe no job, this is difficult if we have worked all our life It is better to learn to live with it, not that we shouldn't be treating it, yes, anyway to make life easier is important, and that is living with it too. Blessings, Marla On Sat, Jan 31, 2009 at 9:41 AM, cherisse simon <cherisse_simon (AT) yahoo (DOT) co.uk> wrote:Hello everyone just a little check note.The last time I saw my neurologist was the 2nd of December, a he decided to drop my steroids to 7.5 mg, down from 10 mg. When I did drop the steroids I was experiencing dizzy spells and headaches which I hadn't had in a while. But Im really scared because this year it will be 2 years since I have been on steroids, and sometimes it makes me think that maybe I might be on them forever or even life. I wish this monster will go awayHas anyone lost any weight whilst on steroids?From Cherisse-- 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)-- 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)-- 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)

[Guest guest]

HI MEMBERS,

I AM FEELING SAD AND OK.I CAN;T REALLY PUT MY FINGER ON WHAT IS CAUSING ME TO FEEL SAD BUT WILL REVEAL ITSELF.I WENT TO CHURCH TODAY AND THE MESSAGE WAS ENCOURAGING.MY HUSBAND AND I WENT TO SEE THE BOOK OF ELI AND HAVING DINNER WITH OUR DAUGHTER.I HAVE TO HAVE ANOTHER MRI DONE ON MY CERVICAL SPINE.I HAVE TO FIND ME ANOTHER LUNG DOCTOR.MY LUNG DOCTOR DONT TAKE MY NEW INSURANCE I HAVE FROM MY HUSBAND' JOB.I HAVE TO FIND AN ENDOCRINOLOGIST TO CHECK MY THYROID.I HAD ONE REMOVED SEVERAL YEARS AGO. I HAVE TO GO BACK TO THE CANCER CENTER AND GET A PLATELET COUNT.THE HAVE BEEN LOW.I HAVE TO TAKE PRESCRIPTION VITAMIN D BECAUSE MY COUNT IS 18 AND SHOULD BE 32-100.OTHER WISE I AM AFRAID I MAY HAVE TO START USING OXYGEN.I HAVE THIRD STAGE PULMONARY SARC AND I GET OUT OF BREATH DOING THE SMALLEST THING.KEEP ME IN YOUR PRAYERS.THANKS FOR ALLOWING ME TO BE A PART OF THIS INFORMATIVE GROUP.

HELEN

Subject: Checking InTo: neurosarcoidosis Date: Sunday, February 7, 2010, 6:01 AM

Good morning all! Today is the big Super Bowl and I plan to watch my Colts win

this game! I have the snacks ready and plan to sit and crochet (if I can get my fingers to work)! I cannot sit and watch TV without crocheting, working puzzles, etc. Makes me too nervous, as I am a very hyper person. Yesterday was my last day of the anti-biotic and also my last day of prednisone, so I am really shaky and hyper today....... :-(

Hope you are all doing well and are ok with all the snow. We got about 5 inches. Most of Indiana really got dumped on, but we only got a little bit.

Please check in sometime today and let us know how you all are. We DO CARE and want to know. Our Moderators are still sick, although a couple are around now and then. Tracie is still "down" and taking some badly needed time off......... ....get well, Tracie.....we miss you and love you.

Hugs,DarleneNS Co-Owner/Moderator

[Guest guest]

Darlene, I can't just watch tv without doing something else, too. Even doing stuff during commercials gets a lot of stuff done. Wisconsin starts a Winter Storm warning this evening up until Wednesday. I've only been out of the house twice all of January and once was to the dentist. I've been battling a severe sinus infection. I need to get to the doctor but with my sleep disorder(Non 24 wake sleep syndrome) it's hard to match the times I'm awake with the times people are home from work. I don't drive(not for 10 years). I found some antibiotics that my son never finished taking and I am taking those until I get to the clinic. There were only enough for two days but they're helping. I spent the last few weeks, on and off, catching up on four months of scrapbooking. I am so happy to

be caught up with last year's photos! I am just finishing a southwest adobe painting and have to ship it off to a relative who wants it. Bit by bit I get stuff done even though I generally feel like crap this time of year. February is usually my worst month for muscle pain, chest pain and depression. For the past four-five years I usually get pleurisy in Feb. Compared to the last couple of years I am doing better. Chest tenderness but not too bad...so far. I think the Nopalea and sublingual B-12 have helped with that. I thank everyone for all the helpful 'coping' info like saline nasal sprays, Biotene products for dry mouth(very helpful!), taking supplements for pain like MSM ,and Milk Thistle for cleansing the liver(much lessened liver pain), drinking plenty of fluids....which also helped my pain level. I tell anyone who will listen that if they are in pain they need to drink more water. I

also found Walk Fit for my feet pain(plantar fascilitis) and they have helped a lot. Because of being home so much and being in slippers or bare feet...my foot doc said I was getting flat feet so needed some support. I got two pair from HSN for a good price and as long as I wear them(inserts for shoes) my foot pain is a lot less. I thought I'd share that in case anyone had the same problem. I've gotten so much helpful info reading the posts on how people are coping with every day life with having sarcoid pain. If anyone wants to share anything else they use with coping I sure would love to hear about it. Have a great day! Life is short...live it to the fullest...to your last living breath.

Subject: Checking InTo: neurosarcoidosis Date: Sunday, February 7, 2010, 12:01 PM

Good morning all! Today is the big Super Bowl and I plan to watch my Colts win

this game! I have the snacks ready and plan to sit and crochet (if I can get my fingers to work)! I cannot sit and watch TV without crocheting, working puzzles, etc. Makes me too nervous, as I am a very hyper person. Yesterday was my last day of the anti-biotic and also my last day of prednisone, so I am really shaky and hyper today.......:-(

Hope you are all doing well and are ok with all the snow. We got about 5 inches. Most of Indiana really got dumped on, but we only got a little bit.

Please check in sometime today and let us know how you all are. We DO CARE and want to know. Our Moderators are still sick, although a couple are around now and then. Tracie is still "down" and taking some badly needed time off.............get well, Tracie.....we miss you and love you.

Hugs,DarleneNS Co-Owner/Moderator