Re: Back Home Again in Indiana

[Guest guest]

Good Morning "Indiana Rose"!...it's early here in NJ ... I awoke at 4:30 a.m. and have been reading posts and "thinking" since then!...if you ask anyone who knows me ... when I am in my "thinking" state, all would say, "Uh Oh!" ... I've been thinking about something which pertains to all of us ... which I'll send in a follow-up post after I've responded to my new sarc friends who have recently responded to my posts which I sent a couple of days ago ... Rose, as usualy, I responded in "red" to your notes below (if anyone is unable for various technical reasons to be unable to see colors on their screen, please let me know ... I will "bold", "italicize", and "underline" responses so that responses stand out so you can more easily see what those of us can see in color -- I have done the bold/italisize/underline thing below ... let me know only if you need this, otherwise, I will skip this step in the future).

Joan

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That's the state song & I always sing it when I cross the Indiana state line coming home. I just got back this afternoon from a trip to Memphis. I'm a big Elvis fan & have wanted to visit Graceland for years, but just didn't get around to it. Then I couldn't drive that far. But now that (my 15 yr. old granddaughter, for anybody who doesn't know, or forgot! -- (since I am farely new to the group, I did not know, but enjoy hearing about my new friends' families ... also, what vitamins is your daughter taking?!?!?...she looks much older than 15!) is driving now & wanted to go somewhere for Fall Break, so I said, Okay, if that somewhere is Memphis. She drove all the way there (about 9 hrs.) and most of the way back. (Rose, I am so very happy you did and were able to visit a place you've been wanting to go!!!, even if some of that trip was spent in "ice bags") We went down 65 through Louisvile to Nashville, then over to Memphis. We stopped Wed. night in Ky, then went to Mammoth Cave the next day. Big mistake. (I'm assuming this is because your body could not make the walk either due to muscle/nerve pain and/or breathing difficulties?...or because your eyes could not see in the darkened atmosphere?...or because your ability to stay awake was diminished?...or was it because you knew bats were sleeping above!?!...lol!-about the bat thing -- my paternal aunt lived in New Mexico ... fortunately, when I was young and "healthy", my parents took me along during their biannual summer vacations -- one of the tours was the Carlsbad Caverns -- although beautiful, the whole "bat" thing freaked me ... ) But I made it through the tour. We spent 2 nights in Memphis, so I had a chance to rest. THEN, on Sat. we drove to St. Louis, to see the Arch (one of my trips out West was on a bus -- that trip was with my father -- my mother would never have taken a bus ... being "cheap" is one of the reasons my parents are divorced!...when I went with my mother as she was still friends with my father's sister, it was always via plane ... my father, after the divorce, eventually realized I was like my mother (smile), and preferred the plane vs. the bus ... my experience with some "not-so-safe" bus riders helped him "splurge" also -- anyway, the bus trip did allow me to also see the "outside" of the Arch--it is very large and impressive) But we got there too late to go up inside; all the trips were sold out. But we took lots of pictures, Sam got to stick her foot in the Mississippi River, we spent the night, then drove home the next day (Sunday), about 5 hrs. (I'm very happy you were able to tolerate such long rides ... I look forward to doing so one day.) Reneness, Goddess & Bootstrap Fairy, loaned me her walker, which was a big help at Graceland. (Rose, if you have medical insurance, they can supply you with one of your own -- in fact, they can supply you with a wheelchair or anything else you require -- just call your dr. and have them write a script or, in some cases, order for you ... I didn't realize this and had purchased my own walker, until that no longer was useful outside my home ... then, my doctor's nurse called a local medical supply store who accepted my insurance ... and 1 week later, a wheelchair was delivered!) I really wouldn't be tired from the trip, except for this facial flushing. Who else has this? (I do, but I blame mine on medications and fevers and being hot in the summer ... I woke up with it, in fact, just this morning -- I am not hot, it is not summer, I do not have a fever that I am aware of--but then again, I get fevers without knowing I have one, nor are any of my meds that I am currently taking since I've been taking them for a while cause such. How is your blood pressure? If you are unsure of your blood pressure, you should call your dr. -- high blood pressure can develop at any age. Also, If you do not have a history of cea, perhaps you do now. "Dr. Tracie" can probably explain what is or may be happening to you--and she is free of charge!) It used to last just a few minutes; I'd feel my face getting really hot & it would be bright red. It wasn't associated with activity, emotions, room temp, nothing. It was different from the hyperhidrosis (excessive sweating), where my hair would get soaked & sweat would pool in my glasses! But it wasn't a big deal, because it came & went. The past few weeks it's been lasting longer & the last two nights of the trip it was awful. Even with the AC blowing on high & a fan in my face, I couldn't sleep because of it. There's no pain, like a sunburn; it's just so hot I can't stand it. The rest of me is fine, even covered up with blankets. I'm sending a picture I took Sat. night. I put ice in plastic bags & fastened them on my head with my bra, since I couldn't find anything else. It helped for a hour or so, then I woke up with the ice melted & leaking all over my shirt. I put some more in & got a little more sleep, maybe two hours total. This morning it cleared up, my face wasn't even pink, until tonight. (sea can occur in the strangest of ways -- even fluorescent light can affect it, as well as heat alone--you've been outside in the heat from your note...and even though you may not have spent time in the sun, minimal sun exposure can bring this out ... if it is sea, I'm not concerned, but if your blood pressure is affecting you or the meds from it, that is very dangerous and needs immediate attention) It's a little hot, but I think I'll be able to sleep with a fan. Last night Sam & were eating supper & my face was so hot I was taking the ice water glasses & holding them to my cheeks.

Any suggestions? I go to my primary doc in a couple of weeks, but don't see the neuro for a month or so. Hope you enjoy the picture. (and very much did!...you even look cute with ice bags!) I sent one of Sam & I too, down in the cave. I had some comments I was going to make on some of the emails, but I can't remember them now. I should take notes, I guess. (Since I would forget, how I remember is the following: some Internet Service Providers (ISP's), will allow you to create folders within your e-mail ... I have one called "Sarcoid" where I save all of the very informative e-mails; if I need to respond,--once I've responded, I save the mail and response which can be found in my 'sent' mail to my "Sarcoid" folder; sometimes, I keep need-to-respond or want-to-read again in my normal "in-mail" or I save in my "Sarc - need to respond" folder; I also print ones out so I can re-read prior to responding -- all of these help me to remember.) Well, it's off to bed (chair, actually, since my bed is covered with stuff again. (Is this another "sarc" thing??!?...LOL!...Joe gets so frustrated ... every day, the bed is covered with "things" ... e-mails, website info, medications, cat brushes ... whatever I've utilized my time with on any particular day ... and I can't even blame a "returning from vacation" excuse!) Indiana Rose

So glad you made your long-wanted trip!,

Joan

[Guest guest]

Good Morning "Indiana Rose"!...it's early here in NJ ... I awoke at 4:30 a.m. and have been reading posts and "thinking" since then!...if you ask anyone who knows me ... when I am in my "thinking" state, all would say, "Uh Oh!" ... I've been thinking about something which pertains to all of us ... which I'll send in a follow-up post after I've responded to my new sarc friends who have recently responded to my posts which I sent a couple of days ago ... Rose, as usualy, I responded in "red" to your notes below (if anyone is unable for various technical reasons to be unable to see colors on their screen, please let me know ... I will "bold", "italicize", and "underline" responses so that responses stand out so you can more easily see what those of us can see in color -- I have done the bold/italisize/underline thing below ... let me know only if you need this, otherwise, I will skip this step in the future).

Joan

-------------------------------------------------------

That's the state song & I always sing it when I cross the Indiana state line coming home. I just got back this afternoon from a trip to Memphis. I'm a big Elvis fan & have wanted to visit Graceland for years, but just didn't get around to it. Then I couldn't drive that far. But now that (my 15 yr. old granddaughter, for anybody who doesn't know, or forgot! -- (since I am farely new to the group, I did not know, but enjoy hearing about my new friends' families ... also, what vitamins is your daughter taking?!?!?...she looks much older than 15!) is driving now & wanted to go somewhere for Fall Break, so I said, Okay, if that somewhere is Memphis. She drove all the way there (about 9 hrs.) and most of the way back. (Rose, I am so very happy you did and were able to visit a place you've been wanting to go!!!, even if some of that trip was spent in "ice bags") We went down 65 through Louisvile to Nashville, then over to Memphis. We stopped Wed. night in Ky, then went to Mammoth Cave the next day. Big mistake. (I'm assuming this is because your body could not make the walk either due to muscle/nerve pain and/or breathing difficulties?...or because your eyes could not see in the darkened atmosphere?...or because your ability to stay awake was diminished?...or was it because you knew bats were sleeping above!?!...lol!-about the bat thing -- my paternal aunt lived in New Mexico ... fortunately, when I was young and "healthy", my parents took me along during their biannual summer vacations -- one of the tours was the Carlsbad Caverns -- although beautiful, the whole "bat" thing freaked me ... ) But I made it through the tour. We spent 2 nights in Memphis, so I had a chance to rest. THEN, on Sat. we drove to St. Louis, to see the Arch (one of my trips out West was on a bus -- that trip was with my father -- my mother would never have taken a bus ... being "cheap" is one of the reasons my parents are divorced!...when I went with my mother as she was still friends with my father's sister, it was always via plane ... my father, after the divorce, eventually realized I was like my mother (smile), and preferred the plane vs. the bus ... my experience with some "not-so-safe" bus riders helped him "splurge" also -- anyway, the bus trip did allow me to also see the "outside" of the Arch--it is very large and impressive) But we got there too late to go up inside; all the trips were sold out. But we took lots of pictures, Sam got to stick her foot in the Mississippi River, we spent the night, then drove home the next day (Sunday), about 5 hrs. (I'm very happy you were able to tolerate such long rides ... I look forward to doing so one day.) Reneness, Goddess & Bootstrap Fairy, loaned me her walker, which was a big help at Graceland. (Rose, if you have medical insurance, they can supply you with one of your own -- in fact, they can supply you with a wheelchair or anything else you require -- just call your dr. and have them write a script or, in some cases, order for you ... I didn't realize this and had purchased my own walker, until that no longer was useful outside my home ... then, my doctor's nurse called a local medical supply store who accepted my insurance ... and 1 week later, a wheelchair was delivered!) I really wouldn't be tired from the trip, except for this facial flushing. Who else has this? (I do, but I blame mine on medications and fevers and being hot in the summer ... I woke up with it, in fact, just this morning -- I am not hot, it is not summer, I do not have a fever that I am aware of--but then again, I get fevers without knowing I have one, nor are any of my meds that I am currently taking since I've been taking them for a while cause such. How is your blood pressure? If you are unsure of your blood pressure, you should call your dr. -- high blood pressure can develop at any age. Also, If you do not have a history of cea, perhaps you do now. "Dr. Tracie" can probably explain what is or may be happening to you--and she is free of charge!) It used to last just a few minutes; I'd feel my face getting really hot & it would be bright red. It wasn't associated with activity, emotions, room temp, nothing. It was different from the hyperhidrosis (excessive sweating), where my hair would get soaked & sweat would pool in my glasses! But it wasn't a big deal, because it came & went. The past few weeks it's been lasting longer & the last two nights of the trip it was awful. Even with the AC blowing on high & a fan in my face, I couldn't sleep because of it. There's no pain, like a sunburn; it's just so hot I can't stand it. The rest of me is fine, even covered up with blankets. I'm sending a picture I took Sat. night. I put ice in plastic bags & fastened them on my head with my bra, since I couldn't find anything else. It helped for a hour or so, then I woke up with the ice melted & leaking all over my shirt. I put some more in & got a little more sleep, maybe two hours total. This morning it cleared up, my face wasn't even pink, until tonight. (sea can occur in the strangest of ways -- even fluorescent light can affect it, as well as heat alone--you've been outside in the heat from your note...and even though you may not have spent time in the sun, minimal sun exposure can bring this out ... if it is sea, I'm not concerned, but if your blood pressure is affecting you or the meds from it, that is very dangerous and needs immediate attention) It's a little hot, but I think I'll be able to sleep with a fan. Last night Sam & were eating supper & my face was so hot I was taking the ice water glasses & holding them to my cheeks.

Any suggestions? I go to my primary doc in a couple of weeks, but don't see the neuro for a month or so. Hope you enjoy the picture. (and very much did!...you even look cute with ice bags!) I sent one of Sam & I too, down in the cave. I had some comments I was going to make on some of the emails, but I can't remember them now. I should take notes, I guess. (Since I would forget, how I remember is the following: some Internet Service Providers (ISP's), will allow you to create folders within your e-mail ... I have one called "Sarcoid" where I save all of the very informative e-mails; if I need to respond,--once I've responded, I save the mail and response which can be found in my 'sent' mail to my "Sarcoid" folder; sometimes, I keep need-to-respond or want-to-read again in my normal "in-mail" or I save in my "Sarc - need to respond" folder; I also print ones out so I can re-read prior to responding -- all of these help me to remember.) Well, it's off to bed (chair, actually, since my bed is covered with stuff again. (Is this another "sarc" thing??!?...LOL!...Joe gets so frustrated ... every day, the bed is covered with "things" ... e-mails, website info, medications, cat brushes ... whatever I've utilized my time with on any particular day ... and I can't even blame a "returning from vacation" excuse!) Indiana Rose

So glad you made your long-wanted trip!,

Joan

[Guest guest]

You want suggestions?? Wear the bra to Dr's office!!

You crack me up, and we all need a good laugh.

Sam is so pretty!! and such a sweetheart, at 15, to want to go on vacation with Gram, knowing that she will, probably, have to take care of her, at sometime during the trip.

I am really proud of her!! Can I have the honor???-----

Shirley

From: Rose

To: Neurosarcoidosis

Sent: Monday, November 01, 2004 12:30 AM

Subject: Back Home Again in Indiana

That's the state song & I always sing it when I cross the Indiana state line coming home. I just got back this afternoon from a trip to Memphis. I'm a big Elvis fan & have wanted to visit Graceland for years, but just didn't get around to it. Then I couldn't drive that far. But now that (my 15 yr. old granddaughter, for anybody who doesn't know, or forgot!) is driving now & wanted to go somewhere for Fall Break, so I said, Okay, if that somewhere is Memphis. She drove all the way there (about 9 hrs.) and most of the way back. We went down 65 through Louisvile to Nashville, then over to Memphis. We stopped Wed. night in Ky, then went to Mammoth Cave the next day. Big mistake. But I made it through the tour. We spent 2 nights in Memphis, so I had a chance to rest. THEN, on Sat. we drove to St. Louis, to see the Arch. But we got there too late to go up inside; all the trips were sold out. But we took lots of pictures, Sam got to stick her foot in the Mississippi River, we spent the night, then drove home the next day (Sunday), about 5 hrs. Reneness, Goddess & Bootstrap Fairy, loaned me her walker, which was a big help at Graceland. I really wouldn't be tired from the trip, except for this facial flushing. Who else has this? It used to last just a few minutes; I'd feel my face getting really hot & it would be bright red. It wasn't associated with activity, emotions, room temp, nothing. It was different from the hyperhidrosis (excessive sweating), where my hair would get soaked & sweat would pool in my glasses! But it wasn't a big deal, because it came & went. The past few weeks it's been lasting longer & the last two nights of the trip it was awful. Even with the AC blowing on high & a fan in my face, I couldn't sleep because of it. There's no pain, like a sunburn; it's just so hot I can't stand it. The rest of me is fine, even covered up with blankets. I'm sending a picture I took Sat. night. I put ice in plastic bags & fastened them on my head with my bra, since I couldn't find anything else. It helped for a hour or so, then I woke up with the ice melted & leaking all over my shirt. I put some more in & got a little more sleep, maybe two hours total. This morning it cleared up, my face wasn't even pink, until tonight. It's a little hot, but I think I'll be able to sleep with a fan. Last night Sam & were eating supper & my face was so hot I was taking the ice water glasses & holding them to my cheeks.

Any suggestions? I go to my primary doc in a couple of weeks, but don't see the neuro for a month or so. Hope you enjoy the picture. I sent one of Sam & I too, down in the cave. I had some comments I was going to make on some of the emails, but I can't remember them now. I should take notes, I guess. Well, it's off to bed (chair, actually, since my bed is covered with stuff again.) Indiana Rose

---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.774 / Virus Database: 521 - Release Date: 10/8/2004

[Guest guest]

Dr. Tracie" can probably explain what is or may be happening to you--and she is free of charge!) It used to last just a few minutes; I'd feel my face

That's what ya all think now-- but just wait, my bills a-coming! LOL!!!