Re: Hi from Marla, this is long

[Guest guest]

Marla I took that plaquinal for about 6 months for my granules and it made my eyesight bad, I refuse to take that again and whatever you do rest in between, my breathe is so short geesh I pray for a cure too in my lifetime, thank God I live alone. I'm praying for you ALL.

-- Hi from Marla, this is long

Hey ya all, (was around my sister a couple weeks ago and she’s from Florida the ya all was catchy!

I’m sorry I’ve been MIA, I just lost a friend to Melanoma at age 36 with two young boys, I have been helping her out through the summer and trying to run my business, family home, etc.. I could go on, and I just about got to Directorship with MK, then I started to fade, I think I was just slowing rolling down hill since spring, but didn’t really notice until the other day my husband made a harmless statement all in teasing, but he said if he knew I was going to fill the halls up with so much clutter he would of built wider halls, I looked around and he was right, the house is full of junk, not like me, I have someone who cleans, and I always tell her just clean around things, I will get to them later, then my friend, this has been a difficult week with her funeral being on Thursday and just leading up to it, I’ve dropped back a couple levels on my MK path too, then woke up one day and the pain was terrible, I realized I have been just getting by, not so much fatigue as just plain no energy, I would look at something and just hope it would go away! It didn’t and neither did my Sarc, I think you all know my metho, and plaquanil were all increased a few months ago when I found out that I am losing the use of my left side especially leg, but still I thought I could just keep on going, ha, it gets you in the end. The reason I have the energy to write this, as I read many posts but say I will come back later and respond, and just don’t. Well I am in the middle of a 3 day IV steroid boost, so I feel much better, even yesterday got things done I had put off for way too long. I need to repeat neruopsych testing too, and a consideration of changing medications, of course the Insurance Company denied Remicade for me! So push on we do, at least for a few days here I have some energy, you know I am so tired at the end of the day that I am sleeping despite the drugs, thank goodness.

Know that I read and pray for all of you, you are all special in my heart and pray for a cure some day, but for now we have this wonderful group of people, blessings from heaven, thank you for listening! Marla

"Faith sees the invisible, believes the incredible and receives the impossible"

[Guest guest]

Marla I took that plaquinal for about 6 months for my granules and it made my eyesight bad, I refuse to take that again and whatever you do rest in between, my breathe is so short geesh I pray for a cure too in my lifetime, thank God I live alone. I'm praying for you ALL.

-- Hi from Marla, this is long

Hey ya all, (was around my sister a couple weeks ago and she’s from Florida the ya all was catchy!

I’m sorry I’ve been MIA, I just lost a friend to Melanoma at age 36 with two young boys, I have been helping her out through the summer and trying to run my business, family home, etc.. I could go on, and I just about got to Directorship with MK, then I started to fade, I think I was just slowing rolling down hill since spring, but didn’t really notice until the other day my husband made a harmless statement all in teasing, but he said if he knew I was going to fill the halls up with so much clutter he would of built wider halls, I looked around and he was right, the house is full of junk, not like me, I have someone who cleans, and I always tell her just clean around things, I will get to them later, then my friend, this has been a difficult week with her funeral being on Thursday and just leading up to it, I’ve dropped back a couple levels on my MK path too, then woke up one day and the pain was terrible, I realized I have been just getting by, not so much fatigue as just plain no energy, I would look at something and just hope it would go away! It didn’t and neither did my Sarc, I think you all know my metho, and plaquanil were all increased a few months ago when I found out that I am losing the use of my left side especially leg, but still I thought I could just keep on going, ha, it gets you in the end. The reason I have the energy to write this, as I read many posts but say I will come back later and respond, and just don’t. Well I am in the middle of a 3 day IV steroid boost, so I feel much better, even yesterday got things done I had put off for way too long. I need to repeat neruopsych testing too, and a consideration of changing medications, of course the Insurance Company denied Remicade for me! So push on we do, at least for a few days here I have some energy, you know I am so tired at the end of the day that I am sleeping despite the drugs, thank goodness.

Know that I read and pray for all of you, you are all special in my heart and pray for a cure some day, but for now we have this wonderful group of people, blessings from heaven, thank you for listening! Marla

"Faith sees the invisible, believes the incredible and receives the impossible"

[Guest guest]

.. I need to repeat

neruopsych testing too, and a consideration of changing medications, of course

the Insurance Company denied Remicade for me! First...If your insurance company turns you down and your dr feels you need Remicade...contact the company that makes it and may provide it for you free. I posted the address a couple of months ago - I'll try to go back and find it. I've been getting it free for about 18 months. yes there is an application sheet you have to fill out first.second...tell me more about he neuropsych testing please? I really want to know if there is any neuropsych rehab or therapy?? I know I need something Here

in southern Indiana everyone greets each other with "Hey, how are

ya" When I moved back here 10 years ago no one but my Dad was saying

that! It drove me crazy then and it still does. Last week i caught

myself saying it .. Guess I'm a Housier again nowThanks MUCHRuth>> > > Hey ya all, (was around my sister a couple weeks ago and she's from Florida> the ya all was catchy! > > I'm sorry I've been MIA, I just lost a friend to Melanoma at age 36 with two> young boys, I have been helping her out through the summer and trying to run> my business, family home, etc.. I could go on, and I just about got to> Directorship with MK, then I started to fade, I think I was just slowing> rolling down hill since spring, but didn't really notice until the other day> my husband made a harmless statement all in teasing, but he said if he knew> I was going to fill the halls up with so much clutter he would of built> wider halls, I looked around and he was right, the house is full of junk,> not like me, I have someone who cleans, and I always tell her just clean> around things, I will get to them later, then my friend, this has been a> difficult week with her funeral being on Thursday and just leading up to it,> I've dropped back a couple levels on my MK path too, then woke up one day> and the pain was terrible, I realized I have been just getting by, not so> much fatigue as just plain no energy, I would look at something and just> hope it would go away! It didn't and neither did my Sarc, I think you all> know my metho, and plaquanil were all increased a few months ago when I> found out that I am losing the use of my left side especially leg, but still> I thought I could just keep on going, ha, it gets you in the end. The> reason I have the energy to write this, as I read many posts but say I will> come back later and respond, and just don't. Well I am in the middle of a 3> day IV steroid boost, so I feel much better, even yesterday got things done> I had put off for way too long. I need to repeat neruopsych testing too,> and a consideration of changing medications, of course the Insurance Company> denied Remicade for me! So push on we do, at least for a few days here I> have some energy, you know I am so tired at the end of the day that I am> sleeping despite the drugs, thank goodness. > > Know that I read and pray for all of you, you are all special in my heart> and pray for a cure some day, but for now we have this wonderful group of> people, blessings from heaven, thank you for listening! Marla > > > > "Faith sees the invisible, believes the incredible and receives the> impossible">

[Guest guest]

.. I need to repeat

neruopsych testing too, and a consideration of changing medications, of course

the Insurance Company denied Remicade for me! First...If your insurance company turns you down and your dr feels you need Remicade...contact the company that makes it and may provide it for you free. I posted the address a couple of months ago - I'll try to go back and find it. I've been getting it free for about 18 months. yes there is an application sheet you have to fill out first.second...tell me more about he neuropsych testing please? I really want to know if there is any neuropsych rehab or therapy?? I know I need something Here

in southern Indiana everyone greets each other with "Hey, how are

ya" When I moved back here 10 years ago no one but my Dad was saying

that! It drove me crazy then and it still does. Last week i caught

myself saying it .. Guess I'm a Housier again nowThanks MUCHRuth>> > > Hey ya all, (was around my sister a couple weeks ago and she's from Florida> the ya all was catchy! > > I'm sorry I've been MIA, I just lost a friend to Melanoma at age 36 with two> young boys, I have been helping her out through the summer and trying to run> my business, family home, etc.. I could go on, and I just about got to> Directorship with MK, then I started to fade, I think I was just slowing> rolling down hill since spring, but didn't really notice until the other day> my husband made a harmless statement all in teasing, but he said if he knew> I was going to fill the halls up with so much clutter he would of built> wider halls, I looked around and he was right, the house is full of junk,> not like me, I have someone who cleans, and I always tell her just clean> around things, I will get to them later, then my friend, this has been a> difficult week with her funeral being on Thursday and just leading up to it,> I've dropped back a couple levels on my MK path too, then woke up one day> and the pain was terrible, I realized I have been just getting by, not so> much fatigue as just plain no energy, I would look at something and just> hope it would go away! It didn't and neither did my Sarc, I think you all> know my metho, and plaquanil were all increased a few months ago when I> found out that I am losing the use of my left side especially leg, but still> I thought I could just keep on going, ha, it gets you in the end. The> reason I have the energy to write this, as I read many posts but say I will> come back later and respond, and just don't. Well I am in the middle of a 3> day IV steroid boost, so I feel much better, even yesterday got things done> I had put off for way too long. I need to repeat neruopsych testing too,> and a consideration of changing medications, of course the Insurance Company> denied Remicade for me! So push on we do, at least for a few days here I> have some energy, you know I am so tired at the end of the day that I am> sleeping despite the drugs, thank goodness. > > Know that I read and pray for all of you, you are all special in my heart> and pray for a cure some day, but for now we have this wonderful group of> people, blessings from heaven, thank you for listening! Marla > > > > "Faith sees the invisible, believes the incredible and receives the> impossible">

[Guest guest]

Marla, I think you've talked about your friend before; I'm so sorry that she didn't make it. Please don't underestimate the toll this experience has & will take on you. Be sure that you have a friend or family member to lean on, next week or next month, anytime that you need it. A counselor friend of mine describes grief as being like the ocean; sometimes it crashes at you over & over, sometimes you are standing in calm water & a wave knocks you off your feet without warning, and sometimes it's the little things just lapping at the shore that do us in. You might see someone walking, just like your friend did, and be overcome with grief, anger, missing her. If something like this happens, don't think you are crazy. Talk to someone. You know that you can always call me, day or night. I've still got that midwive's ability to wake up in the middle of the night & go back to sleep.

Take care of yourself, Marla. Love & prayers coming your way, along with a new virtual blanket from Tracie's Blankies, special delivery. Love, Rose

Ramblin' Rose

Moderator

A merry heart is good medicine. Proverbs 17:22

Can you find the hidden words?  Take a break and play Seekadoo!

[Guest guest]

Marla, I think you've talked about your friend before; I'm so sorry that she didn't make it. Please don't underestimate the toll this experience has & will take on you. Be sure that you have a friend or family member to lean on, next week or next month, anytime that you need it. A counselor friend of mine describes grief as being like the ocean; sometimes it crashes at you over & over, sometimes you are standing in calm water & a wave knocks you off your feet without warning, and sometimes it's the little things just lapping at the shore that do us in. You might see someone walking, just like your friend did, and be overcome with grief, anger, missing her. If something like this happens, don't think you are crazy. Talk to someone. You know that you can always call me, day or night. I've still got that midwive's ability to wake up in the middle of the night & go back to sleep.

Take care of yourself, Marla. Love & prayers coming your way, along with a new virtual blanket from Tracie's Blankies, special delivery. Love, Rose

Ramblin' Rose

Moderator

A merry heart is good medicine. Proverbs 17:22

Can you find the hidden words?  Take a break and play Seekadoo!

[Guest guest]

HI Ruth,

I’ve

already talked to the Remicade people and I have all the paper work, but we

make too much to get help, we fall in the crack where we can’t afford to

pay for it and the facility, but we make to much to get help! In fact I had

to pay my copay to the delivery man who delivered my steroids before he would

give them to me, the home health nurse was here and waited for over an hour

before he finally showed up, what happened to taking g care of the patient

first? What happens if someone can’t afford there copay right then,

no meds, so then they end up in the ER, now that would surely save them money,

and guarantee payment??

The neuropsych

testing I did 7 years ago was really annoying, I am not looking forward to

doing it again, but I think it is more for documentation then helping, just

like when I found out that I was losing strength in my leg, the neruo said,

well I don’t think we need to do IV steroids right now, but I would

increase your other meds to the point of tolerance, I asked him about getting

some physical therapy for my leg, and he said, wouldn’t help what you’ve

lost you won’t get back, but don’t just sit around, because if you

don’t use it you will lose it, (OK, it’s not like I had just

stopped walking or something, how did I lose it in the first place)J

Anyway I

still do the treadmill, some days are better then others. OK now I have

to mention this because I just laugh when I try it, you know those big balls

used to do stomach crunches on, well I got one a long time ago, and my husband

decided to get it out and use it, so the other day I got on it, and as soon as I

laid back my legs shot up in the air and down I went, splat! So of course

my husband said I was doing it wrong, so he had me try again today, and was

holding on to me, and my legs where everywhere but on the floor, I tried to

tell him! Sometimes you just have to laugh at life! J

Anyway off

the subject, I have to meet with the psychologist before they schedule testing

to see what testing I need, I will let you know my appt. of course is about 5

weeks out.

Last time

they had me do stupid little games, where does this go, etc.. Some things

on a computer and listen to this story, then tell it back in 3 hours, ya

right?!

I’ve

decided that what keeps my mind sharp(LOL) is playing solitaire on the

computer for hours, thus avoiding other things! But I’m telling ya

it works! Love to all, Marl

a

" Faith

sees the invisible, believes the incredible and receives the impossible "

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of olehomepla

Sent: Saturday, September 01, 2007

2:15 PM

To: Neurosarcoidosis

Subject: Re: Hi

from Marla, this is long

.. I need to repeat

neruopsych testing too, and a consideration of changing medications, of course

the Insurance Company denied Remicade for me!

First...If your insurance company turns you

down and your dr feels you need Remicade...contact the company that makes it

and may provide it for you free. I posted the address a couple of

months ago - I'll try to go back and find it. I've been getting it

free for about 18 months. yes there is an application sheet you

have to fill out first.

second...tell me more about he neuropsych testing please? I really

want to know if there is any neuropsych rehab or therapy?? I know I

need something

Here in southern Indiana

everyone greets each other with " Hey, how are ya "

When I moved back here 10 years ago no one but my Dad was saying

that! It drove me crazy then and it still does. Last

week i caught myself saying it ..

Guess I'm a Housier again now

Thanks MUCH

Ruth

>

>

>

> Hey ya all, (was around my sister a couple weeks ago and she's from Florida

> the ya all was catchy!

>

> I'm sorry I've been MIA, I just lost a friend to Melanoma at age 36 with

two

> young boys, I have been helping her out through the summer and trying to

run

> my business, family home, etc.. I could go on, and I just about got to

> Directorship with MK, then I started to fade, I think I was just slowing

> rolling down hill since spring, but didn't really notice until the other

day

> my husband made a harmless statement all in teasing, but he said if he

knew

> I was going to fill the halls up with so much clutter he would of built

> wider halls, I looked around and he was right, the house is full of junk,

> not like me, I have someone who cleans, and I always tell her just clean

> around things, I will get to them later, then my friend, this has been a

> difficult week with her funeral being on Thursday and just leading up to

it,

> I've dropped back a couple levels on my MK path too, then woke up one day

> and the pain was terrible, I realized I have been just getting by, not so

> much fatigue as just plain no energy, I would look at something and just

> hope it would go away! It didn't and neither did my Sarc, I think you all

> know my metho, and plaquanil were all increased a few months ago when I

> found out that I am losing the use of my left side especially leg, but

still

> I thought I could just keep on going, ha, it gets you in the end. The

> reason I have the energy to write this, as I read many posts but say I

will

> come back later and respond, and just don't. Well I am in the middle of a

3

> day IV steroid boost, so I feel much better, even yesterday got things

done

> I had put off for way too long. I need to repeat neruopsych testing too,

> and a consideration of changing medications, of course the Insurance

Company

> denied Remicade for me! So push on we do, at least for a few days here I

> have some energy, you know I am so tired at the end of the day that I am

> sleeping despite the drugs, thank goodness.

>

> Know that I read and pray for all of you, you are all special in my heart

> and pray for a cure some day, but for now we have this wonderful group of

> people, blessings from heaven, thank you for listening! Marla

>

>

>

> " Faith sees the invisible, believes the incredible and receives the

> impossible "

>

[Guest guest]

Thank

you I am praying for  you too, I have not had any problems with my eyes have

been on plaquanil about 7 years now and the eye doctor just has me coming every

year now, my eyesight is more related to my age now, can see up close without

readers or far away without prescription glasses, God Bless, Marla

" Faith

sees the invisible, believes the incredible and receives the impossible "

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of changedcompletely

Sent: Saturday, September 01, 2007

2:05 PM

To: Neurosarcoidosis

Subject: Re: Hi

from Marla, this is long

Marla

I took that plaquinal for about 6 months for my granules and it made my

eyesight bad, I refuse to take that again and whatever you do rest in

between, my breathe is so short geesh I pray for a cure too in my lifetime,

thank God I live alone. I'm praying for you ALL.

-- Hi from Marla, this

is long

Hey ya all, (was around my sister a couple weeks

ago and she’s from Florida

the ya all was catchy!

I’m sorry I’ve been MIA, I just lost

a friend to Melanoma at age 36 with two young boys, I have been helping her

out through the summer and trying to run my business, family home, etc.. I

could go on, and I just about got to Directorship with MK, then I started to

fade, I think I was just slowing rolling down hill since spring, but

didn’t really notice until the other day my husband made a harmless

statement all in teasing, but he said if he knew I was going to fill the

halls up with so much clutter he would of built wider halls, I looked around

and he was right, the house is full of junk, not like me, I have someone who

cleans, and I always tell her just clean around things, I will get to them

later, then my friend, this has been a difficult week with her funeral being

on Thursday and just leading up to it, I’ve dropped back a couple

levels on my MK path too, then woke up one day and the pain was terrible, I

realized I have been just getting by, not so much fatigue as just plain no

energy, I would look at something and just hope it would go away! It

didn’t and neither did my Sarc, I think you all know my metho, and

plaquanil were all increased a few months ago when I found out that I am

losing the use of my left side especially leg, but still I thought I could just

keep on going, ha, it gets you in the end. The reason I have the energy

to write this, as I read many posts but say I will come back later and

respond, and just don’t. Well I am in the middle of a 3 day IV

steroid boost, so I feel much better, even yesterday got things done I had

put off for way too long. I need to repeat neruopsych testing too, and

a consideration of changing medications, of course the Insurance Company

denied Remicade for me! So push on we do, at least for a few days here

I have some energy, you know I am so tired at the end of the day that I am

sleeping despite the drugs, thank goodness.

Know that I read and pray for all of you, you

are all special in my heart and pray for a cure some day, but for now we have

this wonderful group of people, blessings from heaven, thank you for

listening! Marla

" Faith sees the invisible,

believes the incredible and receives the impossible "

[Guest guest]

Thank

you Rose you always say the right things, and I so appreciate that, I do have a

good counselor I’ve been seeing since I was first dx with Sarcoidosi, the

first time I had to leave the hospital I saw him, and he continues to help me

through this disease and life.  Boy if I wake up and go back to sleep the next

day is a wash, but I was down to working days when I finally left the hospital

the second and final time.  Thanks again, God bless, Marla

" Faith

sees the invisible, believes the incredible and receives the impossible "

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Rose

Sent: Saturday, September 01, 2007

8:25 PM

To: Neurosarcoidosis

Subject: RE: Hi

from Marla, this is long

Marla, I

think you've talked about your friend before; I'm so sorry that she didn't make

it. Please don't underestimate the toll this experience has & will

take on you. Be sure that you have a friend or family member to lean on,

next week or next month, anytime that you need it. A counselor friend of

mine describes grief as being like the ocean; sometimes it crashes at you over

& over, sometimes you are standing in calm water & a wave knocks you

off your feet without warning, and sometimes it's the little things just

lapping at the shore that do us in. You might see someone walking, just

like your friend did, and be overcome with grief, anger, missing her. If

something like this happens, don't think you are crazy. Talk to

someone. You know that you can always call me, day or night.

I've still got that midwive's ability to wake up in the middle of the night

& go back to sleep.

Take care

of yourself, Marla. Love & prayers coming your way, along with a new

virtual blanket from Tracie's Blankies, special delivery. Love, Rose

Ramblin' Rose

Moderator

A merry heart is good medicine. Proverbs 17:22

Can

you find the hidden words? Take a break and play Seekadoo!