Re: How did you tell your kids about your dx?

[Guest guest]

Tony,

I ended up with this disease when my son had just turned 7. For me, it's been just short of 17 years that I've been a "sarcoidian."

I know that most of what we read says we're in trouble, and that our life may be shortened by this disease. Actually, it would be shortened by the secondary issues that come courtesy of this disease. I do know that with adequate treatment, a working combination of immunosupressive medications- that we can lead a fairly normal life.

You will need to pace yourself, and listen to your body. When it says rest, rest. You may not be able to cart the kids to all their soccer games, but let them know you will be there whenever you can. Then do that.

Instead of camping out and hiking the trails, you may need to stay in a motel and get the kids cameras that they can use to take pictures and show you the sights via their photography. (This has actually worked very well in our home.)

Let them know that you are concerned, and that you really don't know what the course will be. I find that I can still do the grocery shopping, (although I don't always know what I went for--and who knows where the list is) and I can get myself to and from my appointments. I enjoy a couple of different support groups, and have found them quite helpful.

If the kids are interested, let them read up on the disease. Print out the articles, (I highly recommend the FSR one at www.stopsarcoidosis.org) and if they ask a question, and you don't know the answer-- tell them that. Tell them that you'll try to find the answer, but in the meantime-- you ALL need to trust that you will be in the hands of people that can help you.

My son asked me point blank if I was going to die of this disease. My answer to him was that I didn't know. I told him I did not plan on dying-- not anytime soon.

As the disease has progressed, he now understands that I'm not going to do a bunch of running around, and the housework isn't going to be done with perfection, and his dad and I will argue and laugh and argue and laugh and cry and the cycle of life will continue. He knows that I love him so very much-- and that I want for him to get his life and health in order--and into a loving healthy relationship. and he still worries at times that he may lose me.

One of the most important things I've learned is that I can not live in fear of what might happen. It's important that I educate myself on this disease, and that my MD's are willing to educate themself. I insist that we take a team approach, and have told all my MD's that I will bring in articles, and I will be asking questions. I've even said to them that I know they've got 150 or 200 patients with high blood pressure and diabetes-- and only 1 or 2 of us with sarcoidosis. So I don't expect them to know all the latest on sarc-- but that I will be staying on top of what is happening with this disease and what is being done research wise. So- if they can't work with me to keep me going, I find another one that will.

Honesty is your best ally. These kids are smart, and computer savvy-- so keep them abreast of what is going on. This way you will empower them-- and that takes away the fear.

Blessings to you and your family,

Tracie

NS Co-owner/moderator

[Guest guest]

Tony,One of the first things I wish I would have done when first diagnosed in 1994 with sarcoid was to read up on it and take it seriously. I was in the process of moving from NC to Florida within a few days of my medianoscopy and got lost in the shuffle. The drs I saw here in Florida acted like it was no big deal and to get on with my life. I believed them. Shame on me as a nurse. I am responsible for my body and didn't listen when my heart continued to weirdly skip. Looking back (hindsight is 20/20) I wish I would have sought out care at a good sarcoidosis specialty clinic initially. s Hopkins is where I go now but back then I wasn't this sick. About 7 yrs into my illness I did go to a sarcoidosis clinic (not s Hopkins) in another state but was not taken seriously. Admitedly, I was not as sick then but things were brewing. Sitting there in this physician's office I saw right away that I was not important. This doctor seemed more concerned (he discussed it in a

flamboyant way in front of me with others who kept interrupting my eval) with his papers he was yet to write, etc. I left thinking it was just me and I would be ok. I never went back to that clinic...found out my then pulmonologist had close ties (I had wanted a fresh look) to that pulmo. I could tell that they had talked the moment I walked in and sat down. I kept putting it all back on me...I pushed myself beyond my limits and in July 2004 I woke up one day with the sarcoid rearing its really ugly head. Up until then I had managed to talk myself into a "if you'll believe you're well you'll be well" state (I do believe in positive thinking but also I believe now in "realistic" thinking). I found a different pulmo and a new primary care physician (my other pulmo was both). Thank God that happened b/c I don't know what I would have done otherwise. One thing I've learned is that we must have the support of our physicians and be able to trust them. I found my way back to

another sarcoid clinic (s Hopkins) in Nov. 2005 and that was the best thing to have happened. Now, I am receiving the care I so badly needed by people who know what this disease can do. Tracie addressed in an excellent manner the question you asked about your kids. I just wanted to add my thoughts on the beginning of this disease and how I would have liked to have known more. I would say to anyone with sarcoid to make sure their physician really listens to them...if not, go elsewhere asap. As a nurse it was surprising to me to find out just how many didn't know (and some didn't really care) much at all about sarcoid. My kids were younger back then (youngest of four is now 20). You have definitely come to the right site with this forum. Blessings,Beckytiodaat@... wrote: Tony, I ended up with this disease when my son had just turned 7. For me, it's been just short of 17 years that I've been a "sarcoidian." I know that most of what we read says we're in trouble, and that our life may be shortened by this disease. Actually, it would be shortened by the secondary issues that come courtesy of this disease. I do know that with adequate treatment, a working combination of immunosupressive medications- that we can lead a fairly normal life. You will need to pace yourself, and listen to your body. When

it says rest, rest. You may not be able to cart the kids to all their soccer games, but let them know you will be there whenever you can. Then do that. Instead of camping out and hiking the trails, you may need to stay in a motel and get the kids cameras that they can use to take pictures and show you the sights via their photography. (This has actually worked very well in our home.) Let them know that you are concerned, and that you really don't know what the course will be. I find that I can still do the grocery shopping, (although I don't always know what I went for--and who knows where the list is) and I can get myself to and from my appointments. I enjoy a couple of different support groups, and have found them quite helpful. If the kids are interested, let them read up on the disease. Print out the articles, (I highly recommend the FSR one at www.stopsarcoidosis.org) and if they

ask a question, and you don't know the answer-- tell them that. Tell them that you'll try to find the answer, but in the meantime-- you ALL need to trust that you will be in the hands of people that can help you. My son asked me point blank if I was going to die of this disease. My answer to him was that I didn't know. I told him I did not plan on dying-- not anytime soon. As the disease has progressed, he now understands that I'm not going to do a bunch of running around, and the housework isn't going to be done with perfection, and his dad and I will argue and laugh and argue and laugh and cry and the cycle of life will continue. He knows that I love him so very much-- and that I want for him to get his life and health in order--and into a loving healthy relationship. and he still worries at times that he may lose me. One of the most important things I've learned is that I can not live in fear

of what might happen. It's important that I educate myself on this disease, and that my MD's are willing to educate themself. I insist that we take a team approach, and have told all my MD's that I will bring in articles, and I will be asking questions. I've even said to them that I know they've got 150 or 200 patients with high blood pressure and diabetes-- and only 1 or 2 of us with sarcoidosis. So I don't expect them to know all the latest on sarc-- but that I will be staying on top of what is happening with this disease and what is being done research wise. So- if they can't work with me to keep me going, I find another one that will. Honesty is your best ally. These kids are smart, and computer savvy-- so keep them abreast of what is going on. This way you will empower them-- and that takes away the fear. Blessings to you and your family, Tracie NS Co-owner/moderator __________________________________________________

[Guest guest]

To Becky & & all, From what I have seen and heard it seems like the first symptoms you notice in your body aren't taken seriously by your physician and are overlooked, you may skip from doctor to doctor. Then one by one the sarcoid symptoms seem to appear very slowly over a long time span so the doctors don't take you seriously then either. Is it always this way? Do most people end up with like a "full blown" sarcoid over 10 years or so? Just wondering..... Debbie T. Mac Tosh wrote: Tony,One of the first things I wish I would have done when first diagnosed in 1994 with sarcoid was to read up on it and take it seriously. I was in the process of moving from NC to Florida within a few days of my

medianoscopy and got lost in the shuffle. The drs I saw here in Florida acted like it was no big deal and to get on with my life. I believed them. Shame on me as a nurse. I am responsible for my body and didn't listen when my heart continued to weirdly skip. Looking back (hindsight is 20/20) I wish I would have sought out care at a good sarcoidosis specialty clinic initially. s Hopkins is where I go now but back then I wasn't this sick. About 7 yrs into my illness I did go to a sarcoidosis clinic (not s Hopkins) in another state but was not taken seriously. Admitedly, I was not as sick then but things were brewing. Sitting there in this physician's office I saw right away that I was not important. This doctor seemed more concerned (he discussed it in a flamboyant way in front of me with others who kept interrupting my eval) with his papers he was yet to write, etc. I left thinking it was just me and I would be ok. I never went back to that clinic...found out my

then pulmonologist had close ties (I had wanted a fresh look) to that pulmo. I could tell that they had talked the moment I walked in and sat down. I kept putting it all back on me...I pushed myself beyond my limits and in July 2004 I woke up one day with the sarcoid rearing its really ugly head. Up until then I had managed to talk myself into a "if you'll believe you're well you'll be well" state (I do believe in positive thinking but also I believe now in "realistic" thinking). I found a different pulmo and a new primary care physician (my other pulmo was both). Thank God that happened b/c I don't know what I would have done otherwise. One thing I've learned is that we must have the support of our physicians and be able to trust them. I found my way back to another sarcoid clinic (s Hopkins) in Nov. 2005 and that was the best thing to have happened. Now, I am receiving the care I so badly needed by people who know what this disease can do. Tracie addressed in an

excellent manner the question you asked about your kids. I just wanted to add my thoughts on the beginning of this disease and how I would have liked to have known more. I would say to anyone with sarcoid to make sure their physician really listens to them...if not, go elsewhere asap. As a nurse it was surprising to me to find out just how many didn't know (and some didn't really care) much at all about sarcoid. My kids were younger back then (youngest of four is now 20). You have definitely come to the right site with this forum. Blessings,Beckytiodaat@... wrote: Tony, I ended up with this disease when my son had just turned

7. For me, it's been just short of 17 years that I've been a "sarcoidian." I know that most of what we read says we're in trouble, and that our life may be shortened by this disease. Actually, it would be shortened by the secondary issues that come courtesy of this disease. I do know that with adequate treatment, a working combination of immunosupressive medications- that we can lead a fairly normal life. You will need to pace yourself, and listen to your body. When it says rest, rest. You may not be able to cart the kids to all their soccer games, but let them know you will be there whenever you can. Then do that. Instead of camping out and hiking the trails, you may need to stay in a motel and get the kids cameras that they can use to take pictures and show you the sights via their photography. (This has actually worked very well in our home.) Let them know that you are

concerned, and that you really don't know what the course will be. I find that I can still do the grocery shopping, (although I don't always know what I went for--and who knows where the list is) and I can get myself to and from my appointments. I enjoy a couple of different support groups, and have found them quite helpful. If the kids are interested, let them read up on the disease. Print out the articles, (I highly recommend the FSR one at www.stopsarcoidosis.org) and if they ask a question, and you don't know the answer-- tell them that. Tell them that you'll try to find the answer, but in the meantime-- you ALL need to trust that you will be in the hands of people that can help you. My son asked me point blank if I was going to die of this disease. My answer to him was that I didn't know. I told him I did not plan on dying-- not anytime soon. As the disease has progressed,

he now understands that I'm not going to do a bunch of running around, and the housework isn't going to be done with perfection, and his dad and I will argue and laugh and argue and laugh and cry and the cycle of life will continue. He knows that I love him so very much-- and that I want for him to get his life and health in order--and into a loving healthy relationship. and he still worries at times that he may lose me. One of the most important things I've learned is that I can not live in fear of what might happen. It's important that I educate myself on this disease, and that my MD's are willing to educate themself. I insist that we take a team approach, and have told all my MD's that I will bring in articles, and I will be asking questions. I've even said to them that I know they've got 150 or 200 patients with high blood pressure and diabetes-- and only 1 or 2 of us with sarcoidosis. So I don't expect them to know all

the latest on sarc-- but that I will be staying on top of what is happening with this disease and what is being done research wise. So- if they can't work with me to keep me going, I find another one that will. Honesty is your best ally. These kids are smart, and computer savvy-- so keep them abreast of what is going on. This way you will empower them-- and that takes away the fear. Blessings to you and your family, Tracie NS Co-owner/moderator __________________________________________________

[Guest guest]

Hi Debbie T. and all,You are so right. Many times we are not taken seriously b/c of the odd and often numerous symptoms...that leads to brushing us off b/c it "must" be something else that is minor and not the sarcoid. Also, I truly believe that many doctors just don't know sarcoid. They read that it is mild in many cases and probably think along those lines. For me the hardest part has been to get the proper medical care by people who know what they're doing. I finally have been able to do that. This is one scary disease. A little bit of research leads me to believe that maybe if we all put our names on a petition and made our voices heard (TV, newspapers, radio, government, etc.) we could stand up and be counted...literally. This isn't going away and we're getting sicker or at least hanging on by a string in many cases. The money isn't there (or at least very much) for sarcoid research like other diseases. Lets do something about

it.Blessings,BeckyDebbie wrote: To Becky & & all, From what I have seen and heard it seems like the first symptoms you notice in your body aren't taken seriously by your physician and are overlooked, you may skip from doctor to doctor. Then one by one the sarcoid symptoms seem to appear very slowly over a long time span so the doctors don't take you seriously then either. Is it always this way? Do most people end up with like a

"full blown" sarcoid over 10 years or so? Just wondering..... Debbie T. Mac Tosh <macandtosh626 (AT) yahoo (DOT) com> wrote: Tony,One of the first things I wish I would have done when first diagnosed in 1994 with sarcoid was to read up on it and take it seriously. I was in the process of moving from NC to Florida within a few days of my medianoscopy and got lost in the shuffle. The drs I saw here in Florida acted like it was no big deal and to get on with my life. I believed them. Shame on me as a nurse. I am responsible for my body and didn't listen when my heart continued to weirdly skip. Looking back (hindsight is 20/20) I wish I would have sought out care at a good sarcoidosis specialty clinic initially. s Hopkins is where I go now but back then I wasn't this sick. About 7 yrs into my illness I did go to

a sarcoidosis clinic (not s Hopkins) in another state but was not taken seriously. Admitedly, I was not as sick then but things were brewing. Sitting there in this physician's office I saw right away that I was not important. This doctor seemed more concerned (he discussed it in a flamboyant way in front of me with others who kept interrupting my eval) with his papers he was yet to write, etc. I left thinking it was just me and I would be ok. I never went back to that clinic...found out my then pulmonologist had close ties (I had wanted a fresh look) to that pulmo. I could tell that they had talked the moment I walked in and sat down. I kept putting it all back on me...I pushed myself beyond my limits and in July 2004 I woke up one day with the sarcoid rearing its really ugly head. Up until then I had managed to talk myself into a "if you'll believe you're well you'll be well" state (I do believe in positive thinking but also I believe now in "realistic" thinking). I

found a different pulmo and a new primary care physician (my other pulmo was both). Thank God that happened b/c I don't know what I would have done otherwise. One thing I've learned is that we must have the support of our physicians and be able to trust them. I found my way back to another sarcoid clinic (s Hopkins) in Nov. 2005 and that was the best thing to have happened. Now, I am receiving the care I so badly needed by people who know what this disease can do. Tracie addressed in an excellent manner the question you asked about your kids. I just wanted to add my thoughts on the beginning of this disease and how I would have liked to have known more. I would say to anyone with sarcoid to make sure their physician really listens to them...if not, go elsewhere asap. As a nurse it was surprising to me to find out just how many didn't know (and some didn't really care) much at all about sarcoid. My kids were younger back then (youngest of four is now 20). You have

definitely come to the right site with this forum. Blessings,Beckytiodaat (AT) aol (DOT) com wrote: Tony, I ended up with this disease when my son had just turned 7. For me, it's been just short of 17 years that I've been a "sarcoidian." I know that most of what we read says we're in trouble, and that our life may be shortened by this disease. Actually, it would be shortened by the secondary issues that come courtesy of this disease. I do know that with adequate treatment, a working combination of immunosupressive medications- that we can lead a fairly normal life. You will need to pace yourself, and listen to your body.

When it says rest, rest. You may not be able to cart the kids to all their soccer games, but let them know you will be there whenever you can. Then do that. Instead of camping out and hiking the trails, you may need to stay in a motel and get the kids cameras that they can use to take pictures and show you the sights via their photography. (This has actually worked very well in our home.) Let them know that you are concerned, and that you really don't know what the course will be. I find that I can still do the grocery shopping, (although I don't always know what I went for--and who knows where the list is) and I can get myself to and from my appointments. I enjoy a couple of different support groups, and have found them quite helpful. If the kids are interested, let them read up on the disease. Print out the articles, (I highly recommend the FSR one at www.stopsarcoidosis.org) and if

they ask a question, and you don't know the answer-- tell them that. Tell them that you'll try to find the answer, but in the meantime-- you ALL need to trust that you will be in the hands of people that can help you. My son asked me point blank if I was going to die of this disease. My answer to him was that I didn't know. I told him I did not plan on dying-- not anytime soon. As the disease has progressed, he now understands that I'm not going to do a bunch of running around, and the housework isn't going to be done with perfection, and his dad and I will argue and laugh and argue and laugh and cry and the cycle of life will continue. He knows that I love him so very much-- and that I want for him to get his life and health in order--and into a loving healthy relationship. and he still worries at times that he may lose me. One of the most important things I've learned is that I can not live

in fear of what might happen. It's important that I educate myself on this disease, and that my MD's are willing to educate themself. I insist that we take a team approach, and have told all my MD's that I will bring in articles, and I will be asking questions. I've even said to them that I know they've got 150 or 200 patients with high blood pressure and diabetes-- and only 1 or 2 of us with sarcoidosis. So I don't expect them to know all the latest on sarc-- but that I will be staying on top of what is happening with this disease and what is being done research wise. So- if they can't work with me to keep me going, I find another one that will. Honesty is your best ally. These kids are smart, and computer savvy-- so keep them abreast of what is going on. This way you will empower them-- and that takes away the fear. Blessings to you and your family, Tracie NS Co-owner/moderator

__________________________________________________

[Guest guest]

Hi Tony, When I first started feeling the symptoms of sarcoid, it sounds like my experience was very close to yours. My boys were 19, 16 & 12 at the time and they found it hard to understand what was going on at the time.They knew something was going on, Mom was sick but they hadn't seen her this sick before. I hesiitated to tell them as well. The diagnosis took quite awhile which I am sure you will also agree. Once I had the skin biopsy that confirmed the sarcoidosis, I started to inform them as to what I was dealing with. Any questions they had, I answered. They didn't really ask many. From then on I kept an open view as to what was going on. I don't know if this helps you, but this was my experience. I hope your family understands and supports you at this time when you need them. I am sure they

will. You are right, this is a very good time to tell them when they are on vacation from school. They can have extra time to think and bond with you without the hassle of school and homework and extracuricular (sp?) activities .Good luck and I hope you feel well, Debbie T.Co-moderatorTony wrote: I made it through the holidays with the façade of a smile despite a barn burner of a headache & over whelming fatigue. It was important that I did as it has been a rough year for the kids & for the family with the loss of my Gramma this fall. The kids & I were close with Gramma & we all took her passing very hard. Now, for something even harder part. My parents know about my dx but I asked them keep it close to the vest

until I talked with the kids after the holiday. I would have held off telling my parents too had I not needed a ride for the lumbar puncture. My parents have done their best but I could tell that some of the extended family were fishing for additional details by the questions posed during the holiday. I don't blame them, my parents that is, as everyone needs someone to talk to.My girls are 12 & 16. They know that I have not been well despite best efforts to keep up the appearance that nothing is wrong. Nevertheless, it's hard to hide the cosmetics of the recent flare with the since resolved paralysis of my face and the granulomas around my eyes…not to mention the new granulomas which greeted me this morning with the swollen, Rocky Balboa type nose that I have longed for all my life. As Red Green says…"If women don't find you handsome, they should at least find you handy." Fortunately, I think I have

the 'handy' part covered and, if nothing else, have kept my sense of humor about the rest.The kids have minimal experience with chronic illness as most of their exposure is limited to "so & so died…they were sick…they had ____". I have found a few useful websites regarding talking to adolescents…they pretty much say the same thing…line up your facts, sit the kids down & tell them with as little drama as possible. Answer any of the questions that they have if you know the answer…get answers to the rest. Maybe I'm making too much out of this…perhaps my own fear of this is due to the emotional roller coaster I find myself riding these days (what's up with that???).Like a child beginning to walk, I find myself hesitant to release my support though I know I must to take the next step. The kids are on vacation from school so the time is right to talk with them…any advice is sincerely

welcome.Peace & happiness, Tony~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- FAITH CHATS: WEDNESDAY 9PM EST. 8PM CENTRAL. 6PM PST SUNDAY 12 MIDNIGHT EST. 11PM CENTRAL. 9PM PST OPEN CHATS: THURSDAY 9PM EST. 8PM CENTRAL. 6PM PST SUNDAY 4PM EST. 3PM CENTRAL. 1PM PSTCHATROOM LINK: http://www.emxpc.net/chat/index.php Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Thank you, everyone, for the kind words & support. I talked with my

girls last night. Neither seemed overwhelmed or afraid...both seemed

reasonably confident that I was getting better as the facial palsy

has resolved. I thought about pressing the conversation but such

that discretion as the better part of valor, I resisted such an ill

conceived notion...why throw gasoline on the fire when all I can say

is " I don't know what the future holds... " .

Neither appeared inclined to discuss the issue at any length so I

ended the all to one sided conversation with an invitation for them

to ask me whatever, whenever. I'm not sure what sank in. I'll leave

it sit for a while and watch to see if any questions arise.

My thoughts & prayers are with everyone on this day. May you find

the sunshine through the clouds & peace in the day...Tony

I made it through the holidays

with the façade of a smile despite a

> barn burner of a headache & over whelming fatigue. It was

important

> that I did as it has been a rough year for the kids & for the

family

> with the loss of my Gramma this fall. The kids & I were close with

> Gramma & we all took her passing very hard.

>

> Now, for something even harder part. My parents know about my dx

but

> I asked them keep it close to the vest until I talked with the kids

> after the holiday. I would have held off telling my parents too

had

> I not needed a ride for the lumbar puncture. My parents have done

> their best but I could tell that some of the extended family were

> fishing for additional details by the questions posed during the

> holiday. I don't blame them, my parents that is, as everyone needs

> someone to talk to.

>

> My girls are 12 & 16. They know that I have not been well despite

> best efforts to keep up the appearance that nothing is wrong.

> Nevertheless, it's hard to hide the cosmetics of the recent flare

> with the since resolved paralysis of my face and the granulomas

> around my eyes…not to mention the new granulomas which greeted me

> this morning with the swollen, Rocky Balboa type nose that I have

> longed for all my life. As Red Green says… " If women don't find you

> handsome, they should at least find you handy. " Fortunately, I

think

> I have the 'handy' part covered and, if nothing else, have kept my

> sense of humor about the rest.

>

> The kids have minimal experience with chronic illness as most of

> their exposure is limited to " so & so died…they were sick…they had

> ____ " . I have found a few useful websites regarding talking to

> adolescents…they pretty much say the same thing…line up your facts,

> sit the kids down & tell them with as little drama as possible.

> Answer any of the questions that they have if you know the answer…

get

> answers to the rest. Maybe I'm making too much out of this…perhaps

> my own fear of this is due to the emotional roller coaster I find

> myself riding these days (what's up with that???).

>

> Like a child beginning to walk, I find myself hesitant to release

my

> support though I know I must to take the next step. The kids are

on

> vacation from school so the time is right to talk with them…any

> advice is sincerely welcome.

>

> Peace & happiness, Tony

>

>

>

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

> NS CHAT:- FAITH CHATS: WEDNESDAY 9PM EST. 8PM CENTRAL. 6PM PST

> SUNDAY 12 MIDNIGHT EST. 11PM CENTRAL. 9PM PST

> OPEN CHATS: THURSDAY 9PM EST. 8PM CENTRAL. 6PM PST

> SUNDAY 4PM EST. 3PM CENTRAL. 1PM PST

>

> CHATROOM LINK: http://www.emxpc.net/chat/index.php

>

> Message Archives:-

> http://groups.yahoo.com/group/Neurosarcoidosis/messages

>

> Members Database:-

> Listings of locations, phone numbers, and instant messengers.

> http://groups.yahoo.com/group/Neurosarcoidosis/database

>

>