Re: [SPAM] Re: [Neurosarcoidosis Toll on relationships

[Guest guest]

I read all the posts and my heart goes out to everyone. I too know where you are coming from. It is a good man who doesn't walk out, It is a great man who holds your head while you cry and stays by your side thought out. There are a lot of men who just don't or don't want to understand what we are going through. All they see is we (this crap) is messing up their love and life. I force my fellow to listen, I ask him questions and take him to the doctor with me. I even sometimes play the damsel in distress for him. Hey anything that works. I do say he is very kind and compassioned.

As I said my heart goes out to you all and I pray for you daily. This is one of the greatest places to go. You can vent and so many understand what you are going through. Yes we sometime feel like we can't go on, if it wasn't for my family I would find it easy to just call it quits. We all are survivors so I am sending a virtual HUG to each and every one of you.

Jackie

[sPAM] Re: [Neurosarcoidosis Toll on relationships

Oh ladies this all sounds so familiar. I just finished a conversation with my husband about the situation. He is completely stressed due to money. Of course SS is fighting all the way. My doctors are telling me that I will have to live with chronic pain. I have MS along with Sarcoidosis and my arthritis has gone completely haywire with the sarc and I can hardly walk. Yet I fight thru it every day so my husband doesn't see it, so my kids don't see it, so it doesn't disrupt anyone elses life. I am tired, mentally exhausted. My husband admitted he no longer found me attractive due to the weight I gained from 60 mg of Prednisone a day. I cannot get him to read ANY literature on either MS or Sarcoid so the odds of him understanding are slim to none. He just told me I was right, he didn't understand because he could not feel the physical pain I was in. It is something that we never discuss, even if I try he just doesn't say anything.It all hurts so bad in my heart. I have no support, no family and no friends here being that I cannot work and it is a very small town. I too have thought about suicide. I cannot take one more doctor telling me I will have to live with the pain when you read any literature on the web that says "it is a self-limiting disease that affects the lungs, it usually goes away after 2-3 years", no wonder SS won't approve any of us. With the doctors you say SS and they run...It is just hard that the only conversations we have are regarding money, there is nothing else we talk about and no physical or emotional connection whatsoever. I feel he is only here because he doesn't want to leave me and my two kids on the street...Anyway, that is my rant and rave...this is the first post I have ever done and I guess it is a whopper. It is nice to know that there are other people out there. If we could only get the doctors to realize that it is more than just a simple disease.Thanks for listening,Devrin"Laughter through tears, my favorite emotion"> I just wanted to share with everyone the awesome time I had at my Kay convention, as you know I bought a wheelchair on my 50th birthday, and this past Fri. and Sat. I spent in Denver, a MK friend drove me, there fore she took on the responsibility of pushing my chair, I had many volunteer, but she did the job, I think there were some who were disappointed that she did not share this with others:) what a blessing. I am so glad I did NOT give up! The conference did not get over until late and then up again early that was the hardest part, so I just took a couple letter cat naps when they turned the lights low to show a video,lol. and the only walking I did was in my room, easy there all walls there, and to get in and out of the wheelchair, I came home just a little tired, but did sleep in today. I will not give up on this Dream, to stay as active as I can with my Kay business what a blessing it was when it came into my life, just as I had to> give up a Dream I was living as a Labor and delivery RN, so my Dreams changed but they still go on, Never give up, life might change but that doesn't mean we can't just change our Dream a little and go on. always have a dream in your heart, even if it's small. love to all, Marla> > -- > > > > > > > You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost. > No virus found in this incoming message.> Checked by AVG. > Version: 7.5.519 / Virus Database: 269.22.8/1362 - Release Date: 4/6/2008 11:12 AM>

[Guest guest]

I read all the posts and my heart goes out to everyone. I too know where you are coming from. It is a good man who doesn't walk out, It is a great man who holds your head while you cry and stays by your side thought out. There are a lot of men who just don't or don't want to understand what we are going through. All they see is we (this crap) is messing up their love and life. I force my fellow to listen, I ask him questions and take him to the doctor with me. I even sometimes play the damsel in distress for him. Hey anything that works. I do say he is very kind and compassioned.

As I said my heart goes out to you all and I pray for you daily. This is one of the greatest places to go. You can vent and so many understand what you are going through. Yes we sometime feel like we can't go on, if it wasn't for my family I would find it easy to just call it quits. We all are survivors so I am sending a virtual HUG to each and every one of you.

Jackie

[sPAM] Re: [Neurosarcoidosis Toll on relationships

Oh ladies this all sounds so familiar. I just finished a conversation with my husband about the situation. He is completely stressed due to money. Of course SS is fighting all the way. My doctors are telling me that I will have to live with chronic pain. I have MS along with Sarcoidosis and my arthritis has gone completely haywire with the sarc and I can hardly walk. Yet I fight thru it every day so my husband doesn't see it, so my kids don't see it, so it doesn't disrupt anyone elses life. I am tired, mentally exhausted. My husband admitted he no longer found me attractive due to the weight I gained from 60 mg of Prednisone a day. I cannot get him to read ANY literature on either MS or Sarcoid so the odds of him understanding are slim to none. He just told me I was right, he didn't understand because he could not feel the physical pain I was in. It is something that we never discuss, even if I try he just doesn't say anything.It all hurts so bad in my heart. I have no support, no family and no friends here being that I cannot work and it is a very small town. I too have thought about suicide. I cannot take one more doctor telling me I will have to live with the pain when you read any literature on the web that says "it is a self-limiting disease that affects the lungs, it usually goes away after 2-3 years", no wonder SS won't approve any of us. With the doctors you say SS and they run...It is just hard that the only conversations we have are regarding money, there is nothing else we talk about and no physical or emotional connection whatsoever. I feel he is only here because he doesn't want to leave me and my two kids on the street...Anyway, that is my rant and rave...this is the first post I have ever done and I guess it is a whopper. It is nice to know that there are other people out there. If we could only get the doctors to realize that it is more than just a simple disease.Thanks for listening,Devrin"Laughter through tears, my favorite emotion"> I just wanted to share with everyone the awesome time I had at my Kay convention, as you know I bought a wheelchair on my 50th birthday, and this past Fri. and Sat. I spent in Denver, a MK friend drove me, there fore she took on the responsibility of pushing my chair, I had many volunteer, but she did the job, I think there were some who were disappointed that she did not share this with others:) what a blessing. I am so glad I did NOT give up! The conference did not get over until late and then up again early that was the hardest part, so I just took a couple letter cat naps when they turned the lights low to show a video,lol. and the only walking I did was in my room, easy there all walls there, and to get in and out of the wheelchair, I came home just a little tired, but did sleep in today. I will not give up on this Dream, to stay as active as I can with my Kay business what a blessing it was when it came into my life, just as I had to> give up a Dream I was living as a Labor and delivery RN, so my Dreams changed but they still go on, Never give up, life might change but that doesn't mean we can't just change our Dream a little and go on. always have a dream in your heart, even if it's small. love to all, Marla> > -- > > > > > > > You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost. > No virus found in this incoming message.> Checked by AVG. > Version: 7.5.519 / Virus Database: 269.22.8/1362 - Release Date: 4/6/2008 11:12 AM>