Re: a day off

[Guest guest]

I am sorry to hear that you are struggling to maintain some quality to your life. I hope things settle down a bit. I understand selling the house. We made that decision 4 years ago when we moved into a town house with no yard work etc to take care of. It was a necessary move that has allowed us to still be as comfortable as we can be in the current situation we have here with 's neurosarcoidosis issues. As for the living alone. Do you have family that might be able to assist you with things that you need to get done. You can't tackle this one alone. I deal 's issues and often have to ask for family help. The group here is a wealth of info. I will add you to my prayer list. take

care.MattSubject: a day offTo: Neurosarcoidosis Date: Thursday, April 7, 2011, 9:35 AM

i had to call in sick today. my head hurts too much & 10 hours of sleep didn't seem to have much effect. i hope my boss doesn't get too upset with me, i've been moving pretty slowly around the office lately & stayed home sick just last month. i often wonder how close he is to throwing his hands up & deciding he's had enough.

i've recently decided to sell my house. i've been falling behind with all the yard work needed around this place, just because i don't have the stamina it takes to keep it up, with all the breathing issues. the snow has melted & now all of the leaves that i was unable to get to last fall are once again waiting for me. i just don't think i can do it any more. plus, it looks like i will need to channel alot more of my money towards doctor bills, so getting out from under the large house payment is necessary.

i'm really struggling with the idea that i'm headed for a life as a disabled person. there are days when i feel fairly rested & don't have much of a headache, and i can concentrate fairly well & get some things done. on those days i'm all sorts of optimistic & feel like i'm gonna live a normal life, with a career & home & vacations & a nice retirement. then there are days like today when i dont' think any of that is possible, i feel things going downhill and gaining speed, and i get upset with myself for not having already taken more steps to prepare for the direction this disease is taking me. i don't know how to make that transition, it feels like i'm surrendering. but i have to. but i don't want to. but i have to.

as always, the way this disease has messed up my future is every bit as difficult to handle as the physical manifestations are.

it's nice to be able to vent a little. i live alone so there's nobody here to listen to me but the dogs, and they've heard it all before i'm going back to bed now.

[Guest guest]

I can relate to what you are saying. I had my future all mapped out, then I met the sarc monster. Boy, that was the worst blind date ever! I ended up having to file bankrupcy to get out from under my house payment. This is after I had taken several thousand dollars out of my retirement fund (which wasn't much to begin with) to make the house payments & other bills. I wasn't able to work & had a gap between my short-term disability thru my employer & getting approved for long-term disability. I'm very thankful that long-term disability was one of my benefits, and by paying a little more myself, I received an extra 10%. That 10% makes a big difference.

When I was struggling to continue my career, I read a book, don't remember the name of it. But the author's husband had MS, and as it progressed they had to radically change their lifestyle. They had lived in NYC, were affluent, kids in private schools. From that they moved to a house in a rural area, public school, lots of repairs & maintenance needed for the house & he couldn't do it. So you know who did all that on top of being the primary breadwinner. They were both writers, but he did less & less. She described it as being "downwardly mobile" and at one point felt like they were "falling out of the middle class." Big change. I'm glad I wasn't that wealthy to begin with; I didn't have as much of an adjustment. But I definitely "fell out of the middle class." I've had friends & family encourage me to just rent an apartment so that I don't have to worry about the home maintenance. But I love my cats & dogs & love having a big back yard for them. For the last year my daughter & 2 kids have been living with me. My daughter rakes, mows, etc., whatever needs done.

As long as she's close enough to help out, I intend to stay in my little house til I croak!

This disease, like many, can make you feel out of control. And you do lose control of a lot. But, I've found that there are always things I still control. I don't think of it as surrendering, but as picking my battles. So I pick the small battles, the ones I can win (who do I hang out with? Positive people! Don't let the doctors decide my future; I get info so that I'm making decisions. On a bad day, when I just hunker down under the covers watching Law & Order reruns, I don't consider it surrendering; I've just chosen to veg out that day.) I guess it comes down to attitude & learning to recognize when it's a winnable battle & when a strategic retreat is the wise thing to do. I love Civil War history & reading about how the leaders approached a battle & whether the decision turned out well. So I like to use that kind of terminology in my battle with sarc. You may have a different approach. No matter what, remember that there are ALWAYS alternatives, and we have the power to decide.

Ramblin' RoseCo-owner/Moderator "I child-proofed my home and they STILL get in!" (Bumper sticker)

To: Neurosarcoidosis From: skugger1@...Date: Thu, 7 Apr 2011 09:35:14 -0400Subject: a day off

i had to call in sick today. my head hurts too much & 10 hours of sleep didn't seem to have much effect. i hope my boss doesn't get too upset with me, i've been moving pretty slowly around the office lately & stayed home sick just last month. i often wonder how close he is to throwing his hands up & deciding he's had enough.

i've recently decided to sell my house. i've been falling behind with all the yard work needed around this place, just because i don't have the stamina it takes to keep it up, with all the breathing issues. the snow has melted & now all of the leaves that i was unable to get to last fall are once again waiting for me. i just don't think i can do it any more. plus, it looks like i will need to channel alot more of my money towards doctor bills, so getting out from under the large house payment is necessary.

i'm really struggling with the idea that i'm headed for a life as a disabled person. there are days when i feel fairly rested & don't have much of a headache, and i can concentrate fairly well & get some things done. on those days i'm all sorts of optimistic & feel like i'm gonna live a normal life, with a career & home & vacations & a nice retirement. then there are days like today when i dont' think any of that is possible, i feel things going downhill and gaining speed, and i get upset with myself for not having already taken more steps to prepare for the direction this disease is taking me. i don't know how to make that transition, it feels like i'm surrendering. but i have to. but i don't want to. but i have to.

as always, the way this disease has messed up my future is every bit as difficult to handle as the physical manifestations are.

it's nice to be able to vent a little. i live alone so there's nobody here to listen to me but the dogs, and they've heard it all before i'm going back to bed now.

[Guest guest]

Do you believe in God? You can give your life to Him and He will help you. I have neurosarcoidosis, I was diagnosed in 2001, had 4 strokes,went thru chemo and tons of meds, I am still on tons of meds, had all of the symptoms, and now have my life back! God is the only reason that I am here today, I was sick all of these years and He never left my side! Give your life and disease to Him, He will take it! sjnolan@...From: chris knopf To: Neurosarcoidosis Sent: Thu, April 7, 2011 7:35:14 AMSubject: a day off

i had to call in sick today. my head hurts too much & 10 hours of sleep didn't seem to have much effect. i hope my boss doesn't get too upset with me, i've been moving pretty slowly around the office lately & stayed home sick just last month. i often wonder how close he is to throwing his hands up & deciding he's had enough.

i've recently decided to sell my house. i've been falling behind with all the yard work needed around this place, just because i don't have the stamina it takes to keep it up, with all the breathing issues. the snow has melted & now all of the leaves that i was unable to get to last fall are once again waiting for me. i just don't think i can do it any more. plus, it looks like i will need to channel alot more of my money towards doctor bills, so getting out from under the large house payment is necessary.

i'm really struggling with the idea that i'm headed for a life as a disabled person. there are days when i feel fairly rested & don't have much of a headache, and i can concentrate fairly well & get some things done. on those days i'm all sorts of optimistic & feel like i'm gonna live a normal life, with a career & home & vacations & a nice retirement. then there are days like today when i dont' think any of that is possible, i feel things going downhill and gaining speed, and i get upset with myself for not having already taken more steps to prepare for the direction this disease is taking me. i don't know how to make that transition, it feels like i'm surrendering. but i have to. but i don't want to. but i have to.

as always, the way this disease has messed up my future is every bit as difficult to handle as the physical manifestations are.

it's nice to be able to vent a little. i live alone so there's nobody here to listen to me but the dogs, and they've heard it all before i'm going back to bed now.

[Guest guest]

Matt, I'm so sorry you feel this way, I know just what your going through, and it's not easy.  And don't worry your dogs don't mind hearing it again and again, I tell my dogs too sometimes:)

Just embrace the good days, and get through the bad, but downsizing now if you can may be the thing to do.  I know when I look at something I know is going to take a lot of energy I just keep putting it off, my extra room, looks like a bomb went off in it!  I open the door look in and close it, hoping next time I open it, it will be empty, boy wouldn't that be great!

Hang in there Matt, and go ahead and complain anytime you want that's what we're here for.   Also it doesn't mean that all the good things are gone, if you downsize, maybe you can still do vacations, and eat out once in awhile.  Just take it one day at a time.

Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

 

 

i had to call in sick today.  my head hurts too much & 10 hours of sleep didn't seem to have much effect.  i hope my boss doesn't get too upset with me, i've been moving pretty slowly around the office lately & stayed home sick just last month.  i often wonder how close he is to throwing his hands up & deciding he's had enough.

 

i've recently decided to sell my house.  i've been falling behind with all the yard work needed around this place, just because i don't have the stamina it takes to keep it up, with all the breathing issues.  the snow has melted & now all of the leaves that i was unable to get to last fall are once again waiting for me.  i just don't think i can do it any more.  plus, it looks like i will need to channel alot more of my money towards doctor bills, so getting out from under the large house payment is necessary. 

 

i'm really struggling with the idea that i'm headed for a life as a disabled person.  there are days when i feel fairly rested & don't have much of a headache, and i can concentrate fairly well & get some things done.  on those days i'm all sorts of optimistic & feel like i'm gonna live a normal life, with a career & home & vacations & a nice retirement.  then there are days like today when i dont' think any of that is possible, i feel things going downhill and gaining speed, and i get upset with myself for not having already taken more steps to prepare for the direction this disease is taking me.  i don't know how to make that transition, it feels like i'm surrendering. but i have to.  but i don't want to.  but i have to.

 

as always, the way this disease has messed up my future is every bit as difficult to handle as the physical manifestations are.

 

it's nice to be able to vent a little.  i live alone so there's nobody here to listen to me but the dogs, and they've heard it all before   i'm going back to bed now.

[Guest guest]

PS   I meant sorry I address it to Matt.  I was thinking of you Chris. Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

 

 

i had to call in sick today.  my head hurts too much & 10 hours of sleep didn't seem to have much effect.  i hope my boss doesn't get too upset with me, i've been moving pretty slowly around the office lately & stayed home sick just last month.  i often wonder how close he is to throwing his hands up & deciding he's had enough.

 

i've recently decided to sell my house.  i've been falling behind with all the yard work needed around this place, just because i don't have the stamina it takes to keep it up, with all the breathing issues.  the snow has melted & now all of the leaves that i was unable to get to last fall are once again waiting for me.  i just don't think i can do it any more.  plus, it looks like i will need to channel alot more of my money towards doctor bills, so getting out from under the large house payment is necessary. 

 

i'm really struggling with the idea that i'm headed for a life as a disabled person.  there are days when i feel fairly rested & don't have much of a headache, and i can concentrate fairly well & get some things done.  on those days i'm all sorts of optimistic & feel like i'm gonna live a normal life, with a career & home & vacations & a nice retirement.  then there are days like today when i dont' think any of that is possible, i feel things going downhill and gaining speed, and i get upset with myself for not having already taken more steps to prepare for the direction this disease is taking me.  i don't know how to make that transition, it feels like i'm surrendering. but i have to.  but i don't want to.  but i have to.

 

as always, the way this disease has messed up my future is every bit as difficult to handle as the physical manifestations are.

 

it's nice to be able to vent a little.  i live alone so there's nobody here to listen to me but the dogs, and they've heard it all before   i'm going back to bed now.

[Guest guest]

 

i've been called worse!  ha!

 

(no offense, Matt!)

PS   I meant sorry I address it to Matt.  I was thinking of you Chris.

Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

 

 

i had to call in sick today.  my head hurts too much & 10 hours of sleep didn't seem to have much effect.  i hope my boss doesn't get too upset with me, i've been moving pretty slowly around the office lately & stayed home sick just last month.  i often wonder how close he is to throwing his hands up & deciding he's had enough.

 

i've recently decided to sell my house.  i've been falling behind with all the yard work needed around this place, just because i don't have the stamina it takes to keep it up, with all the breathing issues.  the snow has melted & now all of the leaves that i was unable to get to last fall are once again waiting for me.  i just don't think i can do it any more.  plus, it looks like i will need to channel alot more of my money towards doctor bills, so getting out from under the large house payment is necessary. 

 

i'm really struggling with the idea that i'm headed for a life as a disabled person.  there are days when i feel fairly rested & don't have much of a headache, and i can concentrate fairly well & get some things done.  on those days i'm all sorts of optimistic & feel like i'm gonna live a normal life, with a career & home & vacations & a nice retirement.  then there are days like today when i dont' think any of that is possible, i feel things going downhill and gaining speed, and i get upset with myself for not having already taken more steps to prepare for the direction this disease is taking me.  i don't know how to make that transition, it feels like i'm surrendering. but i have to.  but i don't want to.  but i have to.

 

as always, the way this disease has messed up my future is every bit as difficult to handle as the physical manifestations are.

 

it's nice to be able to vent a little.  i live alone so there's nobody here to listen to me but the dogs, and they've heard it all before   i'm going back to bed now.

[Guest guest]

I'm so sorry, I do understand. We feel like if we give any concession to this disease it will take over and run us over. Have you filed your FMLA (Family Medical Leave Act) paperwork yet. It will protect you in your job, and make it much more difficult for employers to mess with you. NeedyMeds.org is also something to keep in the back of your mind should you need it in the future. Looks like your making some good decisions, I know you hate to leave your home, but less stress seems to at least help some in fighting the monster. Pls take care, and always remember; you are "not" alone, there are a whole bunch of us here. Connie

To: Neurosarcoidosis Sent: Thu, April 7, 2011 9:35:14 AMSubject: a day off

i had to call in sick today. my head hurts too much & 10 hours of sleep didn't seem to have much effect. i hope my boss doesn't get too upset with me, i've been moving pretty slowly around the office lately & stayed home sick just last month. i often wonder how close he is to throwing his hands up & deciding he's had enough.

i've recently decided to sell my house. i've been falling behind with all the yard work needed around this place, just because i don't have the stamina it takes to keep it up, with all the breathing issues. the snow has melted & now all of the leaves that i was unable to get to last fall are once again waiting for me. i just don't think i can do it any more. plus, it looks like i will need to channel alot more of my money towards doctor bills, so getting out from under the large house payment is necessary.

i'm really struggling with the idea that i'm headed for a life as a disabled person. there are days when i feel fairly rested & don't have much of a headache, and i can concentrate fairly well & get some things done. on those days i'm all sorts of optimistic & feel like i'm gonna live a normal life, with a career & home & vacations & a nice retirement. then there are days like today when i dont' think any of that is possible, i feel things going downhill and gaining speed, and i get upset with myself for not having already taken more steps to prepare for the direction this disease is taking me. i don't know how to make that transition, it feels like i'm surrendering. but i have to. but i don't want to. but i have to.

as always, the way this disease has messed up my future is every bit as difficult to handle as the physical manifestations are.

it's nice to be able to vent a little. i live alone so there's nobody here to listen to me but the dogs, and they've heard it all before i'm going back to bed now.

[Guest guest]

hi Connie, thanks for the input.  i just googled FMLA and read up on it.  unfortunately, it doesn't look like it'll help me a whole lot     it looks like FMLA will allow me to take unpaid leave from my job but still enjoy health coverage from my employer, but my employer doesn't offer health coverage & never has.  i'll still try to figure out what paperwork i need to file & where to get that, in case i need to be away from my job for a week or two & want to be able to come back to it.  but the reality of the situation is, with no insurance & no savings & no spouse, i can't afford to be away from work, no matter how bad i feel.

 

thanks for bringing that up, if it weren't for  you sharing what you know, i'd never know that Act was out there!

 

chris

 

I'm so sorry, I do understand.  We feel like if we give any concession to this disease it will take over and run us over.  Have you filed your FMLA (Family Medical Leave Act) paperwork yet.  It will protect you in your job, and make it much more difficult for employers to mess with you.  NeedyMeds.org is also something to keep in the back of your mind should you need it in the future.  Looks like your making some good decisions, I know you hate to leave your home, but less stress seems to at least help some in fighting the monster.  Pls take care, and always remember; you are " not " alone, there are a whole bunch of us here.  Connie

To: Neurosarcoidosis

Sent: Thu, April 7, 2011 9:35:14 AMSubject: a day off 

 

i had to call in sick today.  my head hurts too much & 10 hours of sleep didn't seem to have much effect.  i hope my boss doesn't get too upset with me, i've been moving pretty slowly around the office lately & stayed home sick just last month.  i often wonder how close he is to throwing his hands up & deciding he's had enough.

 

i've recently decided to sell my house.  i've been falling behind with all the yard work needed around this place, just because i don't have the stamina it takes to keep it up, with all the breathing issues.  the snow has melted & now all of the leaves that i was unable to get to last fall are once again waiting for me.  i just don't think i can do it any more.  plus, it looks like i will need to channel alot more of my money towards doctor bills, so getting out from under the large house payment is necessary. 

 

i'm really struggling with the idea that i'm headed for a life as a disabled person.  there are days when i feel fairly rested & don't have much of a headache, and i can concentrate fairly well & get some things done.  on those days i'm all sorts of optimistic & feel like i'm gonna live a normal life, with a career & home & vacations & a nice retirement.  then there are days like today when i dont' think any of that is possible, i feel things going downhill and gaining speed, and i get upset with myself for not having already taken more steps to prepare for the direction this disease is taking me.  i don't know how to make that transition, it feels like i'm surrendering. but i have to.  but i don't want to.  but i have to.

 

as always, the way this disease has messed up my future is every bit as difficult to handle as the physical manifestations are.

 

it's nice to be able to vent a little.  i live alone so there's nobody here to listen to me but the dogs, and they've heard it all before   i'm going back to bed now.

[Guest guest]

I do understand. I also have no one else with insurance. I have a great family, but my IVIG without insurance is $8,000.00 per dose (GamaGard), and this cost does not include all the other med cost. The first month was (5) of these infusions, and then I had to have the infusion once per month since then; or the nerve at the third pacer lead starts ignoring the pacer. (I'm right at 98% paced, that ain't cool) So far with the IVIG the other (2) out of (3) leads are holding. Without my job and the insurance, life would get ugly quick. I have truthfully said I work more for my ins benefits than I do for the paycheck. i can earn money, I can't afford to be sick.

Wikpedia:Family and Medical Leave Act of 1993 (Not just ins benefits)

The Family and Medical Leave Act of 1993 (FMLA) is a United States federal law requiring larger employers to provide employees job-protected unpaid leave due to a serious health condition that makes the employee unable to perform his or her job, or to care for a sick family member, or to care for a new child (including by birth, adoption or foster care). The FMLA is administered by the Wage and Hour Division of the Employment Standards Administration of the United States Department of Labor.

To: Neurosarcoidosis Sent: Tue, April 12, 2011 8:53:08 AMSubject: Re: a day off

hi Connie, thanks for the input. i just googled FMLA and read up on it. unfortunately, it doesn't look like it'll help me a whole lot it looks like FMLA will allow me to take unpaid leave from my job but still enjoy health coverage from my employer, but my employer doesn't offer health coverage & never has. i'll still try to figure out what paperwork i need to file & where to get that, in case i need to be away from my job for a week or two & want to be able to come back to it. but the reality of the situation is, with no insurance & no savings & no spouse, i can't afford to be away from work, no matter how bad i feel.

thanks for bringing that up, if it weren't for you sharing what you know, i'd never know that Act was out there!

chris

I'm so sorry, I do understand. We feel like if we give any concession to this disease it will take over and run us over. Have you filed your FMLA (Family Medical Leave Act) paperwork yet. It will protect you in your job, and make it much more difficult for employers to mess with you. NeedyMeds.org is also something to keep in the back of your mind should you need it in the future. Looks like your making some good decisions, I know you hate to leave your home, but less stress seems to at least help some in fighting the monster. Pls take care, and always remember; you are "not" alone, there are a whole bunch of us here. Connie

To: Neurosarcoidosis Sent: Thu, April 7, 2011 9:35:14 AMSubject: a day off

i had to call in sick today. my head hurts too much & 10 hours of sleep didn't seem to have much effect. i hope my boss doesn't get too upset with me, i've been moving pretty slowly around the office lately & stayed home sick just last month. i often wonder how close he is to throwing his hands up & deciding he's had enough.

i've recently decided to sell my house. i've been falling behind with all the yard work needed around this place, just because i don't have the stamina it takes to keep it up, with all the breathing issues. the snow has melted & now all of the leaves that i was unable to get to last fall are once again waiting for me. i just don't think i can do it any more. plus, it looks like i will need to channel alot more of my money towards doctor bills, so getting out from under the large house payment is necessary.

i'm really struggling with the idea that i'm headed for a life as a disabled person. there are days when i feel fairly rested & don't have much of a headache, and i can concentrate fairly well & get some things done. on those days i'm all sorts of optimistic & feel like i'm gonna live a normal life, with a career & home & vacations & a nice retirement. then there are days like today when i dont' think any of that is possible, i feel things going downhill and gaining speed, and i get upset with myself for not having already taken more steps to prepare for the direction this disease is taking me. i don't know how to make that transition, it feels like i'm surrendering. but i have to. but i don't want to. but i have to.

as always, the way this disease has messed up my future is every bit as difficult to handle as the physical manifestations are.

it's nice to be able to vent a little. i live alone so there's nobody here to listen to me but the dogs, and they've heard it all before i'm going back to bed now.