Re: Too tired to post-- S

[Guest guest]

S,

I totally get the fatigue issue. I'm there too. I know how tough FM can be, it is one of the 1st diagnoses I had. I'm sure it's a small part of what is going on. On the big picture, all the side effects of years on pred, years on immunosuppresants and years having to learn and study what is happening with me-- and share that stuff with my docs, my family, friends and most importantly-- you guys-- has me worn out.

I so want all of us to be as healthy as we can-- and I know we're all doing as much as we can. I also know that we let things go that take too much energy. Sometimes it's our support groups.

BBTW, what is Kindle DX?

Hugs,

Tracie

To: Neurosarcoidosis Sent: Wednesday, September 23, 2009 3:02:58 PMSubject: Re: Tracie Update

Tracie, Sorry i haven't posted much lately. It bothers me, too, when people don't try to take better care of themselves. I've had so many relatives die of lung cancer and many of them smoked until the end. Personally, I have been so tired/fatigued lately that I can barely get a few things done around the house. I was just thinking earlier today that I should post here more often. Thanks for reminding me. I bought a few new books for my Kindle DX(love it!!!) and a couple were on fibromyalgia. Most of the rheumys I've seen(and a few others) think I have that along with sarc. But FM treatments aren't all the same either so I'm reading and letting it sink in my brain before deciding what to do...if anything. Since they aren't treating it like it's sarcoid(though it surely may be) and I still need treatment at times I have to follow-up with what I can. Common sense seems relative in the medical field. I am still on NutriSystem (the diabetic plan)cuz it

helps when I don't feel well...Just nuke it a minute and I'm good to go. I haven't cooked in 9 or 10 years. My blood sugars are much better. My allergies are acting up this week and this morning it felt like someone kicked me in the side of the neck. I haven't had the energy to call the ENT back and see what the blood tests results were yet. I appreciate all your wisdom... hugs S. 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV)."No one whose hope is in You will ever be put to shame….Show me Yourways, O LORD, teach me Your paths; guide me in Your truth and teachme, for You are God my Savior, and My hope is in You all day long."Psalm 25:3,4,5 NIV> From: tracie feldhaus <tiodaat2001@ yahoo.com>> Subject: Tracie Update> To: neurosarcoidosis@ yahoogroups. com, nsmods (AT) yahoogroups (DOT) com, NSMods-owner@ yahoogroups. com> Date: Wednesday, September 23, 2009, 9:20 PM> > > Ok> gang, I post and you all disapear. All 600 of> you.

What's up? I> know I can come on strong, and these days the sarc> advancement has me being sometimes less than tackfull. > > I have always told it like it is-- straight and> direct. i'm also at a place where for me, I'm> frustrated that so many people will chose to do all the> stuff they know is not healthy for themself, and puts others> at risk. Living on immunosuppressants can make all of> us a bit more crazy-- do you go to the grocery store or> shopping and risk serious infection? I don't want> to live in fear of what if-- so i try to be pro-active in> what I do to take care of me. Washing my hands after> shopping so that if the kid in the cart has a cold, I'm> not in as much danger of getting it. Keeping my hands> away from my face-- using my arms to push open a door rather> than use the handle,

etc. Common sense stuff. > That is as good as I can do.> I am watching my mom lose her sight to diabetes, and> if you go over after 3pm each day, she's on her 3rd or> 4th highball, and breakfast and lunch was half a sweetroll> and a cup of coffee with hot chocolate added. But, she> did give herself her insulin injection-- morning and> night. She's never learned to see what is going on> and adjust her dose-- she doesn't want to.> My dad has advanced Parkinsons, and he doesn't> feel well enough to cook for them now, and he took that over> when he retired-- so mom's lost the memory to do it---> and lacks the vision to be safe. > I watch myself tryiing to learn to manage my diabetes,> and it is overwhelming. It's part of this years> changes, and yes-- it has made me understand a little bit of> where my mom's

coming from. I try to be patient> with it-- but i'm not very good at it. > I'm struggling with 3 heart valves not> working right-- and I have been sick for this whole> year. The pulmonary stuff is advancing, because of the> combo. My docs want me to get back to LA to see Dr.> Sharma, and finally went back to full-time work on> Monday. At least for the next 6 wks-- we hope that we> don't have any more cuts.. > I am only able to stick my head in here a couple of> times each week, and generally haven't been well enough> to respond. When I do it's because I see that> something needs to be addressed right away.> I care so much for all of you, and want you to be able> to be as healthful as you can be even with> sarcoidosis. It isn't a death sentence, and so> many of the problems associated

with it can be handled using> common sense approaches. I know it can effect our> personalities, and I've seen alot of change in mine this> last year. I try to remind myself that if I'm> experiencing this-- then all of you might also be in some of> the same place with your sarcoidosis. > It is important that we communicate, and that we reach> out to those in need. If someone can email me a sense> of humor-- I'd appreciate it. Right now, life is> hard.> Take care,> Tracie> NS> Co-owner/moderator > >

[Guest guest]

Tracie, Kindle is a electronic/digital reading device. This particular one is through Amazon.com. I can enlarge the print and it can even read to me out loud. I got the latest, bigger one cuz it will hold up to 3,500 books. That should last me!....lol. There is a Kindle store right on it and i go there and type in what I'm looking for. The downside is the the keyboard is really small so I sometimes use a pencil eraser. I bought a pink protector for it that has a thingy in the back(like a picture frame has) to hold it up all by itself. I mostly read while laying down in bed so now all I have to do is reach up to push a button to turn the page. I am sensitive to ink and was running out of room for all the books I've accumulated through the years. I hate getting rid of a book! lol

I wish I hadn't waited so long to get one. I love it. There is a Kindle, a Kindle 2 and now the Kindle DX. You can download a book in less than 60 seconds and can get many free ones, too. It's a reader's dream....lol. I've been on Nopalea in addition to MSM and Milk thisle. It's helped in the energy department. I also just started Sublungual B-12. hugs! S. 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV)."No one whose hope is in You will ever be put to shame….Show me Your ways, O LORD, teach me Your paths; guide me in Your truth and teach me, for You are God my Savior, and My hope is in You all day long." Psalm 25:3,4,5 NIV> From: tracie feldhaus <tiodaat2001@ yahoo.com>> Subject: Tracie Update> To: neurosarcoidosis@ yahoogroups. com, nsmods (AT) yahoogroups (DOT) com, NSMods-owner@ yahoogroups. com> Date: Wednesday, September 23, 2009, 9:20 PM> >

> Ok> gang, I post and you all disapear. All 600 of> you.

What's up? I> know I can come on strong, and these days the sarc> advancement has me being sometimes less than tackfull. > > I have always told it like it is-- straight and> direct. i'm also at a place where for me, I'm> frustrated that so many people will chose to do all the> stuff they know is not healthy for themself, and puts others> at risk. Living on immunosuppressants can make all of> us a bit more crazy-- do you go to the grocery store or> shopping and risk serious infection? I don't want> to live in fear of what if-- so i try to be pro-active in> what I do to take care of me. Washing my hands after> shopping so that if the kid in the cart has a cold, I'm> not in as much danger of getting it. Keeping my hands> away from my face-- using my arms to push open a door rather> than use the handle,

etc. Common sense stuff. > That is as good as I can do.> I am watching my mom lose her sight to diabetes, and> if you go over after 3pm each day, she's on her 3rd or> 4th highball, and breakfast and lunch was half a sweetroll> and a cup of coffee with hot chocolate added. But, she> did give herself her insulin injection-- morning and> night. She's never learned to see what is going on> and adjust her dose-- she doesn't want to.> My dad has advanced Parkinsons, and he doesn't> feel well enough to cook for them now, and he took that over> when he retired-- so mom's lost the memory to do it---> and lacks the vision to be safe. > I watch myself tryiing to learn to manage my diabetes,> and it is overwhelming. It's part of this years> changes, and yes-- it has made me understand a little bit of> where my mom's

coming from. I try to be patient> with it-- but i'm not very good at it. > I'm struggling with 3 heart valves not> working right-- and I have been sick for this whole> year. The pulmonary stuff is advancing, because of the> combo. My docs want me to get back to LA to see Dr.> Sharma, and finally went back to full-time work on> Monday. At least for the next 6 wks-- we hope that we> don't have any more cuts.. > I am only able to stick my head in here a couple of> times each week, and generally haven't been well enough> to respond. When I do it's because I see that> something needs to be addressed right away.> I care so much for all of you, and want you to be able> to be as healthful as you can be even with> sarcoidosis. It isn't a death sentence, and so> many of the problems associated

with it can be handled using> common sense approaches. I know it can effect our> personalities, and I've seen alot of change in mine this> last year. I try to remind myself that if I'm> experiencing this-- then all of you might also be in some of> the same place with your sarcoidosis. > It is important that we communicate, and that we reach> out to those in need. If someone can email me a sense> of humor-- I'd appreciate it. Right now, life is> hard.> Take care,> Tracie> NS> Co-owner/moderator > >