Guest guest Posted July 27, 2004 Report Share Posted July 27, 2004 Hope this note finds everyone doing the best they can this summer as, its getting more and more impossible to hide from the heat here in TN. Hope you are all finding cool places to hide away, and avoid this heat. As time moves on and I start understanding my body more with sickness, I'm getting to know more and more everyday about what I should avoid and what's ok. The heat is in definite list. I find that being in the heat, I find myself in the bed more for the next 2-3 days following. Do any of you have any of the same symptoms, or am I just weird? OK, no comments about the "being weird" LOL. Just wondering also, if all of you are some of you are getting the emotional support you need being this sick from your families? Do they understand your illness? Do that want to understand your illness? Is this group meeting your emotional needs? What can we do better to do that? Cause I can tell you right up front if we aren't meeting your emotional needs that we certainly want to. This is your support group too. And I'd love to hear your suggestions.Would you like the chat times to be at different times, earlier or later, different days, a morning chat? Anything like that would be helpful. I too appreciate the people that responded to the recent Roll Call. It helps to know what's going on, if your drastically sick we would like to know. Another thing, I know its early to start thinking about the Holiday Mail Out. But I do want to give us more time this year to get your names in so we can compile and send out the list earlier. I just love getting cards from all over the world. I know my postman is envious that I get Christmas Cards from Sweden, Germany, Australia, Canada or any other Country and of course from all over the states. Geeze, you guys have become my family, you understand more about what's going on with me than anyone person in my family and I have a huge handful of nurses. Which by the way, don't know much about this disease. I wrote all of this to say, "thanks to all of you" for your love and support. Love to you all, Ns Moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2004 Report Share Posted July 28, 2004 Hi , Yes, I can relate to the heat with you...it makes me very sick....I just cannot be out in it for any length at all...when we are in FL I spend LOTS of time inside in the AC...but hubby does well in FL, so we continue to go.... Like you, I am learning to listen to my body. It is very hard because I am the hyper type and used to working the clock around, but.those days are gone forever I imagine. Right now I am not doing well. I have a lot going on in the family; a wedding coming up that I have to make a bridesmaids dress for; a daughter leaving and moving to Georgia; and some other family things.......plus I am trying to work 2 days a week for my daughter and her hubby in their trailer business because they are building a new home and are gone a lot and need me to be there-------this is VERY hard....and physically I am not doing well. I know I am in a big flare up....I am having extreme headaches, muscle aches all over, nausea all the time, little bumps popping up everywhere, some leisons also, and different problems with different organs, not sleeping much at all......also, having trouble with my eyes. I have an appointment with my cardio/pulm on August 4 and then I have an appt with a new rheumy on September 28.....if neither of these seem to help, then I am going to find a Doctor in Indy that knows about sarc. I think the old monster is quickly getting the best of me.... Sorry, this is probably more than you wanted to know but I just got started and it just came out......I don't usually do that........ Hope you are all having a good day today. Sending lots of hugs, Darlene > Hope this note finds everyone doing the best they can this summer as, its > getting more and more impossible to hide from the heat here in TN. Hope > you are all finding cool places to hide away, and avoid this heat. As > time > moves on and I start understanding my body more with sickness, I'm getting > to know more and more everyday about what I should avoid and what's ok. > The > heat is in definite list. I find that being in the heat, I find myself in > the bed more for the next 2-3 days following. Do any of you have any of > the > same symptoms, or am I just weird? OK, no comments about the " being > weird " > LOL. > > Just wondering also, if all of you are some of you are getting the > emotional > support you need being this sick from your families? Do they understand > your illness? Do that want to understand your illness? Is this group > meeting your emotional needs? What can we do better to do that? Cause I > can tell you right up front if we aren't meeting your emotional needs that > we certainly want to. This is your support group too. And I'd love to > hear your suggestions.Would you like the chat times to be at different > times > earlier or later, different days, a morning chat? Anything like that > would > be helpful. I too appreciate the people that responded to the recent > Roll > Call. It helps to know what's going on, if your drastically sick we would > like to know. > > Another thing, I know its early to start thinking about the Holiday Mail > Out > But I do want to give us more time this year to get your names in so we > can compile and send out the list earlier. I just love getting cards from > all over the world. I know my postman is envious that I get Christmas > Cards from Sweden, Germany, Australia, Canada or any other Country and of > course from all over the states. Geeze, you guys have become my family, > you > understand more about what's going on with me than anyone person in my > family and I have a huge handful of nurses. Which by the way, don't know > much about this disease. > > I wrote all of this to say, " thanks to all of you " for your love and > support. > > Love to you all, > > Ns Moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2004 Report Share Posted July 28, 2004 Hang in there, Jan! Use some of 's irridescent purple bootstraps! Love, Jeri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2004 Report Share Posted July 28, 2004 OK, I am guilty. So many times people post a message and I have good intentions of writing some little something, but something just kind of happens. I didn't have much of a brain before I got sick so things are really bad now.LOL I am going to make a solemn effort to extend a hand to someone each day. (Now just as long as you guys don't hold me to it). Elodia - -- In Neurosarcoidosis , Marla <mbramer@c...> wrote: > , > You are awesome! What a wonderful letter! > And YES, to your question, I can not take the heat at all!! Same think > when I'm out in the heat, I find myself in bed trying to recover too, it > just wipes me out, not to mention, I get lesions on my any skin exposed > to the sun, too. > I haven't head back from anyone, when I post, which I know I don't do > to often. I hope I have not offended you, if I did, I am so sorry, and > hope you will forgive me. > I am doing better and feel so blessed to be doing better, expect for the > pain, that seems to be getting worse!! But I am still here for all of > you, so please forgive me if I said something to upset you, I love you > all, you are my family and support group!! > God Bless and Love, > Marla > > > > > > > Hope this note finds everyone doing the best they can this summer as, > > its getting more and more impossible to hide from the heat here in > > TN. Hope you are all finding cool places to hide away, and avoid > > this heat. As time moves on and I start understanding my body more > > with sickness, I'm getting to know more and more everyday about what I > > should avoid and what's ok. The heat is in definite list. I find > > that being in the heat, I find myself in the bed more for the next 2-3 > > days following. Do any of you have any of the same symptoms, or am I > > just weird? OK, no comments about the " being weird " LOL. > > > > Just wondering also, if all of you are some of you are getting the > > emotional support you need being this sick from your families? Do > > they understand your illness? Do that want to understand your > > illness? Is this group meeting your emotional needs? What can we do > > better to do that? Cause I can tell you right up front if we aren't > > meeting your emotional needs that we certainly want to. This is your > > support group too. And I'd love to hear your suggestions.Would you > > like the chat times to be at different times, earlier or later, > > different days, a morning chat? Anything like that would be > > helpful. I too appreciate the people that responded to the recent > > Roll Call. It helps to know what's going on, if your drastically sick > > we would like to know. > > > > Another thing, I know its early to start thinking about the Holiday > > Mail Out. But I do want to give us more time this year to get your > > names in so we can compile and send out the list earlier. I just love > > getting cards from all over the world. I know my postman is envious > > that I get Christmas Cards from Sweden, Germany, Australia, Canada or > > any other Country and of course from all over the states. Geeze, you > > guys have become my family, you understand more about what's going on > > with me than anyone person in my family and I have a huge handful of > > nurses. Which by the way, don't know much about this disease. > > > > I wrote all of this to say, " thanks to all of you " for your love and > > support. > > > > Love to you all, > > > > Ns Moderator > > > > > > > > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > The Neurosarcoidosis Community > > > > Live Group Chat:- > > Mondays & Fridays 10pm EST USA > > www.mirc.com download the program, follow instructions find Server > > Dalnet then type in /join #NSChat. If you need help please notify > > at topdat@b... or topdat on yahoo messenger. > > > > 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 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2004 Report Share Posted July 29, 2004 In regard to all the discussion about someone not getting their emails answered.........this has happened to me lots of times! I just figured that everyone was so sick they could not answer and when you get back you have so many emails to go through that you forget to answer each one. I know that is what happens in my case. When I am able to answer, I try to answer each email but when I am sick, I just cannot. When this happens to me, I just forget it and figure everyone is sick.....do not let little things such as this bother you....the stress is NOT worth it. We are all sick here and we DO think of each of you, LOVE each of you, and PRAY for each of you ---- every day. I would like nothing better than to be able to see each one of you (including me) be healed of this sarc monster but this is not possible at this time --- so we must stay together as a group and fight this sarc monster.... and hopefully someday soon, there will be a cure or at least some GOOD help! Just my opinion, but there it is, for what it's worth.......... Sending lots of hugs and prayers, Darlene NS Moderator/Co-Owner Quote Link to comment Share on other sites More sharing options...
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