Re: Life changers

[Guest guest]

Girlfriend, you need to write a book, you are very prolific. Maybe there was a reason I didn't get to see this email till today. Ok, I'll get up, get out of my hole, and look ahead.

Thanks for being you,,Connie

Subject: Life changersTo: neurosarcoidosis Date: Wednesday, November 5, 2008, 11:09 PM

Once again I have been reading where some of us are again in that place of missing what we had prior to sarcoidosis. Marla and Rose are missing there nursing careers, both worked bringing new life into the world. What a wonderful part of medicine that has to be--- to get to join in the joy of the new parents. Even with the ocassional heartbreak of a stillborn child, there are more successes than losses.

I miss the communication and socialization that working gave to me. I was a medical administrator, biller, back office, receptionist, trainer to the staff and I was able to hold some hands when the crisises came down. I miss that. I miss giving and more importantly receiving the benefits of seeing people work through their own health and family issues that come up when someone is ill.

I miss answering the telephone calls and finding out about peoples needs and family orientation to sell them products that would enhance their phone services (the next generation of jobs I held) and talking with the woman that was a stand-in for Hepburn when Hepburn was a young woman. I miss talking to the crew chief for the Marlboro race cars. His story of what went on in the pits was amazing. I miss the normal people who just want to call home, tell the kids to pull a roast out of the freezer so that they can do dinner at home that night. That was the key, I sold them "call waiting" and I know at my house-- if my son was on the phone and someone called in-- he'd better get that call. Because if it was me, and I wanted a roast for dinner-- and couldn't leave him a message to pull it out -- he was going to hear about it.

So what do you do when you come back into that place of reflection. Somedays, you have to crawl back into bed and mourn the losses. That's ok-- we can do that. What do you do when you realize that you've been in bed for months, and need to get out and deal with "now."

Gently, get up-- get a shower. Step outside, and look around. If that is all you can do that day, let it be enough. Slowly, over a period of days, get out and go to the grocery store. Or write a list and send someone to pick up what you need. Read a book, knit some socks for the kids in some place where they need good socks. Get outside of yourself.

I've been dealing with depression for the majority of the last summer. With all the fires that were within miles of home, we had the important pictures and papers packed and ready to go. The air quality sucked, and just going out reaked havoc on the lungs. And that was what it did to healthy people.

I ended up in a major flare, that put me back on my oxygen. The lack of oxygen has meant the increase of peripheral neuropathy, and the lack of exercise has made me even more dependant on both the oygen and now the electric shopping carts. Yep, I hit bottom. And I did an "if only I could still work.... yada yada" on myself. I did the guilt thing well. I ---- Yep I did it to myself.

My therapist finally decided that after working with her for the last 3 yrs, that I needed to find another way to move on in dealing with the issues of chronic illness.

You see, I've found that I don't really have to spend all day, every day, trying to find answers to how to deal with my disease. We both wanted my husband to go into counselling with me-- and I got him there once. He had told me he'd do it = the one time, but not anymore than that. So that left me trying to go over, through and around the same dead horse that I've been beating on for a very long time. Since therapy with both of us wasn't going to happen-- we'd gone as far as we could. So, here I am, wanting to be mad about dealing with this disease, alone, again.

At first I didn't know if I should be insulted, angry, feel abandoned, and yet none of those fit. I knew she was doing me a favor-- "tough love" so to speak.

One thing about a support group like this-- we can reach out and support each other. Or we can choose to stay quiet and go inside ourself, and feel that "no one cares." But we do care. And that is where when anyone shares the pain and remorse and grief of losing what they knew to be themself-- their careers, their relationships, their pain and their joy-- that we all grow a bit stronger.

I've started making jewelry. I took a couple of classes from a local store and am loving making necklaces, bracelets, earrings, and such. I found that although some of my logical brain that has been lost to me, has been replaced by an artistic side I didn't even know existed.

What I'm saying is find something, anything, that you enjoy and give yourself permission to do it. Get outside yourself and share that wonderful person you still are. Call a friend you've not heard from in awhile and let them know you're still alive.

Several years back, a dear friend ended up with liver cancer. Her's was a quick passage to the other side-- but I will never forget the day we went by, and she was so weak. I asked if she'd like to go and get an icecream cone from the local shop-- but her husband and my husband stopped us from going. She was too weak to speak, but the look in her eyes said it all. She wanted that ride down to s and that childs ice cream cone. And I didn't have the inner strength to go against the husbands. What a disappointment for her- and for me.

So you know, I have vowed that if a situation like that comes my way again-- I will at the least drive up and get something to go and take it over to the other person. That way, I can still reach out-- and hey, it may be me that is the one that someone needs to bring the icecream to.

Chronic illness isn't about what we've lost, it's about the humanity we can gain-- if we choose.

Love to all,

Tracie

NS Co-owner/moderator

[Guest guest]

Wow! I had forgotten about this one. I'm so glad that you hadn't had a chance to see it previously, because if you had-- I would not have had the opportunity to reread it-- and get off my pitypot too!

Thanks for the encouragement- and who knows, maybe it will turn into a book.

Love to you,

Tracie

To: Neurosarcoidosis Sent: Thursday, December 11, 2008 5:26:44 PMSubject: Re: Life changers

Girlfriend, you need to write a book, you are very prolific. Maybe there was a reason I didn't get to see this email till today. Ok, I'll get up, get out of my hole, and look ahead.

Thanks for being you,,Connie

Subject: Life changersTo: neurosarcoidosis Date: Wednesday, November 5, 2008, 11:09 PM

Once again I have been reading where some of us are again in that place of missing what we had prior to sarcoidosis. Marla and Rose are missing there nursing careers, both worked bringing new life into the world. What a wonderful part of medicine that has to be--- to get to join in the joy of the new parents. Even with the ocassional heartbreak of a stillborn child, there are more successes than losses.

I miss the communication and socialization that working gave to me. I was a medical administrator, biller, back office, receptionist, trainer to the staff and I was able to hold some hands when the crisises came down. I miss that. I miss giving and more importantly receiving the benefits of seeing people work through their own health and family issues that come up when someone is ill.

I miss answering the telephone calls and finding out about peoples needs and family orientation to sell them products that would enhance their phone services (the next generation of jobs I held) and talking with the woman that was a stand-in for Hepburn when Hepburn was a young woman. I miss talking to the crew chief for the Marlboro race cars. His story of what went on in the pits was amazing. I miss the normal people who just want to call home, tell the kids to pull a roast out of the freezer so that they can do dinner at home that night. That was the key, I sold them "call waiting" and I know at my house-- if my son was on the phone and someone called in-- he'd better get that call. Because if it was me, and I wanted a roast for dinner-- and couldn't leave him a message to pull it out -- he was going to hear about it.

So what do you do when you come back into that place of reflection. Somedays, you have to crawl back into bed and mourn the losses. That's ok-- we can do that. What do you do when you realize that you've been in bed for months, and need to get out and deal with "now."

Gently, get up-- get a shower. Step outside, and look around. If that is all you can do that day, let it be enough. Slowly, over a period of days, get out and go to the grocery store. Or write a list and send someone to pick up what you need. Read a book, knit some socks for the kids in some place where they need good socks. Get outside of yourself.

I've been dealing with depression for the majority of the last summer. With all the fires that were within miles of home, we had the important pictures and papers packed and ready to go. The air quality sucked, and just going out reaked havoc on the lungs. And that was what it did to healthy people.

I ended up in a major flare, that put me back on my oxygen. The lack of oxygen has meant the increase of peripheral neuropathy, and the lack of exercise has made me even more dependant on both the oygen and now the electric shopping carts. Yep, I hit bottom. And I did an "if only I could still work.... yada yada" on myself. I did the guilt thing well. I ---- Yep I did it to myself.

My therapist finally decided that after working with her for the last 3 yrs, that I needed to find another way to move on in dealing with the issues of chronic illness.

You see, I've found that I don't really have to spend all day, every day, trying to find answers to how to deal with my disease. We both wanted my husband to go into counselling with me-- and I got him there once. He had told me he'd do it = the one time, but not anymore than that. So that left me trying to go over, through and around the same dead horse that I've been beating on for a very long time. Since therapy with both of us wasn't going to happen-- we'd gone as far as we could. So, here I am, wanting to be mad about dealing with this disease, alone, again.

At first I didn't know if I should be insulted, angry, feel abandoned, and yet none of those fit. I knew she was doing me a favor-- "tough love" so to speak.

One thing about a support group like this-- we can reach out and support each other. Or we can choose to stay quiet and go inside ourself, and feel that "no one cares." But we do care. And that is where when anyone shares the pain and remorse and grief of losing what they knew to be themself-- their careers, their relationships, their pain and their joy-- that we all grow a bit stronger.

I've started making jewelry. I took a couple of classes from a local store and am loving making necklaces, bracelets, earrings, and such. I found that although some of my logical brain that has been lost to me, has been replaced by an artistic side I didn't even know existed.

What I'm saying is find something, anything, that you enjoy and give yourself permission to do it. Get outside yourself and share that wonderful person you still are. Call a friend you've not heard from in awhile and let them know you're still alive.

Several years back, a dear friend ended up with liver cancer. Her's was a quick passage to the other side-- but I will never forget the day we went by, and she was so weak. I asked if she'd like to go and get an icecream cone from the local shop-- but her husband and my husband stopped us from going. She was too weak to speak, but the look in her eyes said it all. She wanted that ride down to s and that childs ice cream cone. And I didn't have the inner strength to go against the husbands. What a disappointment for her- and for me.

So you know, I have vowed that if a situation like that comes my way again-- I will at the least drive up and get something to go and take it over to the other person. That way, I can still reach out-- and hey, it may be me that is the one that someone needs to bring the icecream to.

Chronic illness isn't about what we've lost, it's about the humanity we can gain-- if we choose.

Love to all,

Tracie

NS Co-owner/moderator