Guest guest Posted October 22, 2004 Report Share Posted October 22, 2004 Amy, I am happy your mom called up, this story is so amazing , atleast now she realised,, thats good for you,, And I have saved this story for my husband now, I don't want to show it to him, b'se he is not yet on that zone, though I ask him often to let me know if he ever thinks he is deprived of doing or eating things he likes, but as of yet touch wood he has not felt so (i really don't know whether he is on denial or just wants to live his life as it comes),its like I have IgAN,,I keep worrying for him all the time, infact we make sure we don't go out on those days when he has to take 120 mg of pred,,we will be dumb founded when people start asking many quesns, and I become very emotiional,, i don't want anybody to remind me he has a problem, ... it looks like i am on denial, I don't know how you guys handle such situations... to tell the truth nobody back home in India (we are in NJ,US now)knows my husband has IgAN except my father,manjus brother , and a cousin doctor. I had lot of blood tests today as we are planning for the baby, my Gynaec wanted me to do it,, she just wants to make sure everything is alright,,I was thinking of you guys as all of you have to get done the blood tests so often, so I was trying to feel what goes on mind when one has to come here often, I know its not possible to feel it,, but still I was trying to connect with my husband thoughts ... now you must be thinking am a weirdo ,, I must have bored you all with my story , thanks for listening,, and you gave us a beautiful story which I will preserve it... take care everybody out there Aruna --- Amy Griswold wrote: > , > I would like to thank you from the bottom of my > heart for posting this > story. I sent the link out to my family, my mother > included, last night. > For some background my mother has been in denial > about my disease and has > only called me once since my diagnosis back in Sept > '03. She thought since > I was still functioning I was fine and life was > groovy. Well this morning I > got a phone call, it was my mother. She was in > tears saying she had no idea > things had gotten that bad for me and she apologized > for thinking I was > doing o.k. and would be cured. I think it finally > sunk in with her and she > now realizes that yes I am ill and I will never be > better all I can do is > just try not to get worse. I told her that I have > my days where I feel I > have unlimited spoons but I do normally pay for > doing too much the following > day when my spoons are few and far between due to > fatigue. I let her know > that some days are worse than others but I have > learnt to function with good > planning and with the constant support of my husband > and mother in law. > Over the past year I've had to cancel many outings > with my kids, I've had to > reschedule many extras we used to do on a regular > basis, I've had to cut > back on the amount of work I do so I have the energy > to be with my family. > All in all I feel I'm doing very well for all I've > been thru this past year. > > So thank you for posting such a wonderful message, > it has truly helped my > family grasp how my life is now lived. I had my > husband read thru it last > night and afterwards he said he already had a good > grasp on how my life had > changed so this didn't tell him anything new. He > also felt this was the > best description to help healthy people understand > the life changes of those > with chronic illness. > > Amy G. > Re: Spoon story > > > > > > > > I hope it is ok to forward this site. It describes > so many people's > > situations with chronic illness. > > > > http://www.butyoudontlooksick.com/spoons.htm > > > > , Mom to Rob > > > > [Non-text portions of this message have been > removed] > > > > > > > > > > To edit your settings for the group, go to our > Yahoo Group > > home page: > > http://groups.yahoo.com/group/iga-nephropathy/ > > > > To unsubcribe via email, > > iga-nephropathy-unsubscribe > > Visit our companion website at www.igan.ca. The > site is entirely supported > by donations. If you would like to help, go to: > > http://www.igan.ca/id62.htm > > > > Thank you > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2004 Report Share Posted October 22, 2004 Aruna, Not bored at all...I think it's incredible that you tried to put yourself in your husbands place when having your labs drawn. It shows great compassion on your part, although from all your posts your compassion has always shone thru. Most of us would kill to have a spouse who was supportive and who allowed their emotion to show in the toughest of times. I'm lucky to have a husband who has been by my side from day one of my diagnosis and who has brought me back from the pits when I've slid into them. There are many spouses/partners out there who slip into denial and refuse to support their ill counterpart. Your husband is a very lucky man to have you. We are also very lucky to have you as part of this group, it's wonderful to get the perspective from the side of the healthy partner. Good luck with the baby planning! What an exciting time in your lives. ) Amy G. Re: Spoon story > > > > > > > > > > > > > I hope it is ok to forward this site. It describes > > so many people's > > > situations with chronic illness. > > > > > > http://www.butyoudontlooksick.com/spoons.htm > > > > > > , Mom to Rob > > > > > > [Non-text portions of this message have been > > removed] > > > > > > > > > > > > > > > To edit your settings for the group, go to our > > Yahoo Group > > > home page: > > > http://groups.yahoo.com/group/iga-nephropathy/ > > > > > > To unsubcribe via email, > > > iga-nephropathy-unsubscribe > > > Visit our companion website at www.igan.ca. The > > site is entirely supported > > by donations. If you would like to help, go to: > > > http://www.igan.ca/id62.htm > > > > > > Thank you > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2004 Report Share Posted October 23, 2004 Hi Aruna, I am so happy you decided to go ahead and try to have a baby. I pray God will bless your marriage with a precious child soon :-) In a message dated 10/22/2004 6:52:25 AM Pacific Daylight Time, prmanju2@... writes: > I had lot of blood tests today as we are planning for > the baby, my Gynaec wanted me to do it,, she just > wants to make sure everything is alright Quote Link to comment Share on other sites More sharing options...
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