Guest guest Posted June 1, 2008 Report Share Posted June 1, 2008 Good Morning VP, I understand how you are feeling. There are just so many of us women in here, (im not speaking for anybody but myself when i say this), that I don't ever get to hear the men bitch and rant. I'm glad you were able to get that off your chest! The whole thing about our other half not understanding, I'm there, too. My husband thinks I'm making up half of my symptoms or just being a "baby" about the rest. He has never taken the time to look up anything about this disease to understand me better, or even gone to a doctor's appointment with me. I keep telling him if he would just go to one with me, he would understand me a hell of alot better.(excuse my language) But, as somebody put it the other day (once again, excuse my memory loss) I think it was either Jackie or Marla, I have to pretend I am "miss everything" at home, and I am just getting too tired somedays, and just in too much pain the others. The eye thing, no that has never happened to me. I do have trouble focusing my eyes once in a while, buut not to where it seems to be doing a 180. That would have scared the crap out of me, too. Congrats on finally getting your SSI to go through! Yeah!! Have a good day, VP...just responding to your email helped me out, too! Christy Subject: suggestions and rantTo: neurosarcoidosis Date: Sunday, June 1, 2008, 2:15 AM Hi to all, I really don't know how to start this letter because there is a lot that has brwed up in me for a while. Reading all the e mails that everyone sends, it seems that majority if the people who are sick with ns or sarcoid are women. You write all about the husbands that are having a problem trying to cope with the sickness and how it's hard for them to understand, but we men have the same problem with our wives I think. How do you explain something to someone who has never been sick?! After my episode with ns, I told my wife, if she were sick with a disease that is unknown[?] I would look up everything and try to undersatnd or find out about it. That goes especially with the side effects of the steroiods I was taking, the short temper, anger and everything else bone pains. It's hard to describe or explain, all she could say is you can containb it. Or even the effects I have tyoday from the ns. Tha brings me to something scary that happened yesterday, but has happened before but not to the same extent. I need to know if any of you has experienced this. I was sitting down in the afternoon, and I was tired. I had taken a short walk and it was very hot. When I came inside, i sat down, closed my eyes and When I opened them, it felt that my left eye was focused on something and the right eye had to turn to get focused on the same object, like turning 180 degrees. I closed them immediatly , opened them again and the same thing occured, as if my right eye was turning to see what the left one was seeing. It scared me a lot, and gave me a terrific head and eyeache that lasted the whole night, and I am stll feeling today, [it's 10 a.m.]. I'm sure it's a neuro thing, but the dr will only say' g"et used to it. I can't tell my wfe because it's difficult to say somethinbg hurts me, mnost of the timne I keep it inside me. There was one dr that I ws able to talk to, but he left. Anyther good thing did happen, I finally started to receive my ssi check. Although I don't live in the states, and it's not a lot of money in $'s. it took me almost 3 years of fighting with them' they turned me down all the time until I hired a lawyer. The first lawyer said I had no case, the second one agreed and now i have 60% disability. The only thing is not all of it is due to ns, but at least they recognised it as a disease and understood that I suffer from it. Sorry about all the rambling, i had to get this off of my chest. VP Discover the new Windows Vista Learn more! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2008 Report Share Posted June 1, 2008 Moish, Thank you so much for speaking from a man's point of view. How sad that your wife can't understand that to have to "tough it up- so to speak) is not an option. I'm sure that you too have tried all the "common sense" approaches to dealing with the ongoing pain, confusion, just feeling worse than shitty hours (days). So many times when we go to our husbands or wives, we are all told to buck up. They can't imagine what it is to have a disease that isn't going to go away in 7-10 days-- and they aren't going to get it. Can you print out some of the articles and leave them where your wife will read them-- maybe by the toilet? Or on her favorite chair with a note that says- Please read this-- I need you to understand what it is that is going on with me? How about writing her a love letter that tells her how hard it is that you aren't able to live up to her expectations- that you too miss being the active, warm loving guy you were-- and that you mourn the loss of that part of yourself also. Let her know that the anger and rage that comes out from being on prednisone is one of the things that hurts you also. Let her know it's not that you are trying to "guilt" her into taking care of you, as you know, she's doing all she can-- but that you just need to know that she does at least want to understand. It's taken along time for me to be able to get my husband to at least read about the disease- and if it is in medical terminology, forget it-- he can't understand the terms-- so it gets pushed the wayside. One thing that may be helpful would be that if you find a post here that addresses an issue the two of you are going through, would be to copy it, and email that post to her. You may need to take her in your arms and tell her how much you love her, and that you feel that maybe she is afraid of you abandoning her- and that isn't happening. You may have to tell her that you need her to be on your "healing team" and be a voice for you when you are too sick to be a voice for yourself. I know it was really helpful when I finally got my husband to go to the docs with me, and tell them what had changed per his perspective. It made my docs say = geez, maybe she's not giving us a line, maybe there are very real issues here-- and no- it's not that he's depressed,- it's that his disease is progressing-- and yeah, that makes everyone stressed out. These are suggestions coming from a woman's point of view-- mine, and I just hope they help. Sincerely, Tracie NS Co-owner/moderator suggestions and rant Hi to all, I really don't know how to start this letter because there is a lot that has brwed up in me for a while. Reading all the e mails that everyone sends, it seems that majority if the people who are sick with ns or sarcoid are women. You write all about the husbands that are having a problem trying to cope with the sickness and how it's hard for them to understand, but we men have the same problem with our wives I think. How do you explain something to someone who has never been sick?! After my episode with ns, I told my wife, if she were sick with a disease that is unknown[?] I would look up everything and try to undersatnd or find out about it. That goes especially with the side effects of the steroiods I was taking, the short temper, anger and everything else bone pains. It's hard to describe or explain, all she could say is you can containb it. Or even the effects I have tyoday from the ns. Tha brings me to something scary that happened yesterday, but has happened before but not to the same extent. I need to know if any of you has experienced this. I was sitting down in the afternoon, and I was tired. I had taken a short walk and it was very hot. When I came inside, i sat down, closed my eyes and When I opened them, it felt that my left eye was focused on something and the right eye had to turn to get focused on the same object, like turning 180 degrees. I closed them immediatly , opened them again and the same thing occured, as if my right eye was turning to see what the left one was seeing. It scared me a lot, and gave me a terrific head and eyeache that lasted the whole night, and I am stll feeling today, [it's 10 a.m.]. I'm sure it's a neuro thing, but the dr will only say' g"et used to it. I can't tell my wfe because it's difficult to say somethinbg hurts me, mnost of the timne I keep it inside me. There was one dr that I ws able to talk to, but he left. Anyther good thing did happen, I finally started to receive my ssi check. Although I don't live in the states, and it's not a lot of money in $'s. it took me almost 3 years of fighting with them' they turned me down all the time until I hired a lawyer. The first lawyer said I had no case, the second one agreed and now i have 60% disability. The only thing is not all of it is due to ns, but at least they recognised it as a disease and understood that I suffer from it. Sorry about all the rambling, i had to get this off of my chest. VP Discover the new Windows Vista Learn more! Quote Link to comment Share on other sites More sharing options...
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