Guest guest Posted September 25, 2004 Report Share Posted September 25, 2004 Hi there Rose-- I checked on Yahoo maps, and it is approx. 669 miles. UGHHHHHHH. I guess it is prolly out of the question to come. Darn it..... I do so want to get together with some of you. It would be so awesome to meet and chat. I live in Iowa up in the northwest corner of the state. About 30 mins from the Minnesota border, and about 1 hour from the South Dakota border. Yeah, that letter that I sent to Aisha about my parents was pretty ugly. And her reply was even more ugly. I do remember that. Even though I am the President of the CRS club... ROFL....... My parents and I are getting along pretty good right now (that is).. LOL But I am sure that is soon to change. So how are you doing Rose?? I am doing fairly well. Just had blood drawn and my sed rate is 64. I am not sure what the means. :-( Well take care of you, from Iowa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2004 Report Share Posted October 7, 2004 Yes Rose, 's idea is a good one. I change purses too much to rely on just one, nothing gets tired, because, one week it will be a shoulder purse, then an arm, then one by hand, then who knows.... Good luck on 's idea!! Can you believe we've been out of the baby business for a year now. I really miss those cute little babies, especially holding them, but I don't miss the long hours on my feet, just too much!! I wonder if I ever will be able to do L & D again?? I now have three jobs, all very part time, little time on my feet!! And of course my family keeps me busy!! Take Care, God Bless, Marla fanny purse I have a dilemma & I know that someone out there has the answer. I have a purse problem. I used to used a shoulder bag, but my shoulders would get too tired, even switching sides frequently. I have tried to reduce what I carry, but I really can't. The purse isn't all that heavy; just too heavy for me. Then I got a purse with short straps, to just carry by hand, thinking that since it was just hanging down, it would be okay. Nope, it's still too heavy. I just don't like backpacks, except when hiking, which I don't do anymore. What I really want is a purse I can wear around my waist, like a fanny pack! I have looked in several stores, in sporting goods, camping, luggage, purses--no luck. I've looked for a purse that I could string onto a strap like the fanny pack straps, but couldn't find anything that works. Anybody got any ideas? Rose My Inbox is protected by SPAMfighter2505 spam mails have been blocked so far.Download free SPAMfighter today!~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers 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 November 1, 2004 Report Share Posted November 1, 2004 Rose, I understand what you mean when you write about pushing the reality of retirement out of your consciousness as much as possible. It sounds trite, but every year that passes i forget more and more about working at all -- as you know it's been three and a half years since I've been able to volunteer even, but I'm so glad you are -- it helps you keep your sanity. You know you have a permanent permission slip to have a pity party here, anytime, and all of us will read with open hearts and minds. I hope Gattlingburg didn't make you overdo, but since I am pulling my usual bad girl habit of reading my email in backwards order. Next time I see you, I have a really supersized face fan, and since my pain med combo has calmed most of my neuralgia pain (do you remember two or three years ago when I was up and hopping around the kitchen cooking up a storm -- if you recall I was hopping from that horrid burning pain. Now you know why I was so Zany that day. Hmmmm better stop thinking about all those sweets, though. I miss cookies most of all. As it turns out I am allergic to Splenda as well as aspartame and saccharin. I knew what affect the latter two had ever since the dry mouth of the secondary Sjogrens made it necessary for me to chew sugar free gum or suck on sugar free candy. Well my visit with the immuno Dr. the Friday after our big bang as the purple bootstrap faery twins was very fruitful for a change. Everyone had differing ideas about what was causing those awful lesions on my tongue -- the one " tell it like it is (usually painfully) told me half my teeth were rotten. I had a look myself, and it wasn't that bad, but the molar that had broken half off while I was on cytoxan, in spite of my religious teeth cleaning, really looked horribly rotten. Dr, was really freaked about it, and within one week (last Friday) I had the tooth with massive, in-tact roots (I kept the tooth) was pulled. The good news is that I have no other cavities, which should be comforting information for all of you with excessively dry mouths. The last time I saw a dentist (when I thought I was ready to do something about my broken molar) he told me I would have to go through some extraordinary measures (three visits three days in a row) to save that tooth and also that I'd have to come in once a week from then until doomsday for a special flouride tray treatment (like the whitening trays) to make up for the night time dryness damage. Looks like he was full of it, huh? The other thing that came out of that visit was that I asked Dr, palpate the mass that has been more and more localized and painful for the last five or six months. He agreed that it had grown larger (two other specialists I'd seen lately were also concerned about the mass but not sure what to make of it). He didn't think it felt like a tumor (at least he would know that, since he works mostly with cancer patients). His thoughts were more that it was (is) some kind of bad and fixed muscle spasm in my small intestines, possibly as a result of the scarring from when I had my gallbladder out and all of my ascending and one half of my transverse colon taken out. Then the surgeoun connected my small intestines to the rest of the transverse colon right where one would buckle a belt. As those of you have seen me since I was blown up in the hospital, I have been carrying around a virtual basketball right in front of my rib cage -- just as large as a pregnant woman just before she drops. What's really eerie is that it is still round and " thumpable " like a ripe melon -- this hollowness has caused more than a few docs to scratch their heads, but no one has really done anything about it. Now, though, since there is a solid mass getting larger by the week, my immuno has begged the GI department to put me on the top of the cancellation list. If not, I won't be seen until Dec 29th-- the date they gave my doc in September!! Some of these docs at the hospital are very overbooked!!! As for my increasingly weird narcoleptic attacks, I was fortunate in two ways concerning that (several people got to see that at the hotel this year). First, I had a major attack in my visit with the sarcoid sleep pulmonologist -- he was pretty upset by my multiple breaks into wide-eyed dream world where I was talking to him in a dream and then forcing myself back into the moment. It is so disconcerting. I know, Rose, that you or someone here suggested that I might be dealing with some sort of epilepsy -- some kind of clustered petit mal seizures. Well, this morning, since I caught a lovely cold right after having the molar taken out (and have been running a 100 degree fever for three days, inspite of taking strong antibiotics) == anyway, my nurse rep. from CICOA (they provide various kinds of services to the elderly and disabled -- it took me four years to get services) came this morning, and the narcolepsy/whatever, kicked in really badly. She decided I needed A LOT more help, so I will be having someone come in twice a week just to take care of my hygiene and keep track of all my meds, as well as my housekeeping being kept in place. I forgot to ask about a ride for my weekly humira shot, as my mother's migraines are getting so frequent that she really can't be depended on. So, in spite of this on going adventure called the sarcweirdness, a few good things have come of it. Oh! and my glucose had been doing so well, and today it just shot up to 228 for no reason! I haven't had a reading over 150 for over three weeks! I imagine it's due to some kind of inflamation or the fever. Tomorrow night I get to test out the brand new sleep lab at the IU hospital (the old one was barbaric! I had to use my walker to get to the bathroom in the main hospital corridor) which is just like St 's -- like a hotel with one big difference -- the ever present eye in the sky and a million electrodes all over my body. I get to wear them all the next day for the narcolepsy study -- I get up for some thing like an hour and try to sleep for twenty -- I don't remember the exact ratio. Last time I had to go to the hospital cafeteria for my meals (with vouchers) all wired up for sound and in my pajamas! My main immuno doc saw me last year and fell out laughing so bad that he sent someone down from his office with a polaroid! Well, at least Mom went out and bought me a new pair of pajamas -- yes, I know I just got two new nightgowns with matching robe for the sarc conference, but I have to wear pajamas for this. At least I'll have a pair where the pants don't make someone wonder where the flood has been! Hopefully this odd fever (I get scared of fevers that hang around when I am already on strong antibiotics) won't stop the study. I just have a weird cough and no nasal conjestion, so I don't think my sleep will be disturbed. Sorry I don't write often anymore. I do read everything -- I'm just feeling so, well, sick anymore. I have to admit that yesterday was a very, very sad day for me and the family. Halloween has always been my favorite holiday, and this is the very first one since I knew what it was that I had to sit out (lie out) altogether. I didn't even think about getting out of bed to see all the cute trick or treaters. Yes, I know I had that great faery costume all ready to greet my little costumed neighbors, but things don't always work out the way we plan them. You wrote how you wanted to rest, Rose, but would not give in to the illness. I think that's the exact right idea. If you are still even the slightest bit guilty about staying in bed all day, or going out with barely brushed hair and no make-up, then I think you owe it to yourself to keep going. Just about now, I realize, way too late according to my husband, that the price I have to pay for going out and doing anything not absolutely necessary (doctor's, funerals, etc.) is just way too high. I am finally comfortable with being comfortable, and finally I see it as being wise, not giving in. If you are ever in my position, I know you are a very wise and smart lady, and Sam's old enough to step up to the plate. Give yourself a break, though, when the time comes. It's amazing how " in touch " a computer and a television (and an occasional phone call) can keep you feeling connected to the human race. I would have never believed it, but now that the final bit of guilt is out of my life over contracting this horrid disease, the more pleasant and even humorous I find myself being. Who knew it would take all this to make me feel well-adjusted? Pretty weird, but, then again, I spend my sleeping hours flying from one sarc buddy's house to another leaving invisible bootstraps under their pillows. Love to you, Rose, and to all our neurosarc gang. > > Darlene, I've used rice bags (actually, rice sox) to heat in the > microwave, > but never thought about cold. Kay Pullen, here in Indiana, had some > nifty > collar things at the Indy Sarc conf. I think they were called Cool > Bands; > you soak them in cold water & they stay cool for hours. I haven't > gotten > them yet, but that might help. The only problem is that I'll have to > wrap > them around my face, which might look a little strange! > > Marla, to tell the truth, I don't think about labor & delivery or > midwifery > much. I think I've sort of pushed it down because I don't have the > energy > to deal with it right now. I've just closed myself off emotionally > from > it. I'm not taking classes. The only constructive thing I'm doing is > volunteering a few hours at our local YWCA. The Y has big financial > problems & is running entirely on volunteers right now. I can sit at > the > desk with my feet up & answer the phone, do misc. computer stuff. I'm > adrift right now, sometimes feeling like a whirlpool is pulling me > under. > I want to just surrender to it somedays, but something keeps me > struggling. > I'm not more depressed than usual; I'm not even feeling hopeless. I > know > there is hope; I'm just so tired of hanging on. It's pity party time > in > Indiana; anybody want to join me? Rose > > Original Message: > ----------------- > From: Marla Bramer mbramer@... > Date: Mon, 1 Nov 2004 10:44:59 -0800 > To: Neurosarcoidosis > Subject: RE: Rose > > > > Hey Rose, > I get the hot face too, but mine is related to activities, if I vacuum > one room I break out in a cold sweat with a hot face, strange stuff we > deal with. > By the way, good pictures, Sam is very pretty!! And she looks like her > Grandma. Your ice on the face reminds me of the ice packs we use in > L & D, nurses can come with anything and make it work, and you used your > experience!! > Rose, do you miss L & D? Are you still taking classes? I am at a point > where I don't know what to do with my life. I miss L & D, but know I > can't do it! I love doing Kay and will continue to do that > forever, but it's up and down. I am working a 10 hour a month job > doing > nursing paperwork. And I just got a job with the school district, doing > substitute health room coverage. I'm looking at a teaching job with > our > local community college, teaching CNA classes. It's obvious I'm not > sure what to do with my life?? And of course there's the doctor > telling > me I'm doing too much!! > Well Rose, I'm glad you had a good time, don't know what to tell you > about the red face, I have lesions on my face, and get the butterfly > rash from time to time. > Well God Bless and love to all, > Marla > > > Re: Back Home Again in Indiana > > Hi Rose, > We must be a LOT alike...........I have been a big fan > of > Elvis ever since he started > singing and have been to Graceland several times...........I still play > his records a lot. > As for the facial problem, I have had it for a long > time > and I tell my Doctors and they > just say it is part of the Sarcoidosis..............no suggestions for > treatment. What I do is keep > a rice bag (I made it) in the freezer and when it gets bad, I use it. > Of course, when you are > out in public somewhere you will not have it with you! I have had > people stare at me and > some even comment...........and I have the sweats like you do, > also.........I get so hot that my > glasses steam up and the sweat literally drips off my hair and > sometimes > my ears and chin. > my Doctor started me on Zoloft to see if it would help and it has, a > little bit but I still have > them.......... > Hugs, > Darlene > > > > > > > -------------------------------------------------------------------- > mail2web - Check your email from the web at > http://mail2web.com/ . > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > NS CHAT:- Has been cancelled for now. > > 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 November 1, 2004 Report Share Posted November 1, 2004 It's pity party time inIndiana; anybody want to join me? Rose I'm right there with you, sweet Rose. This is the longest I've spent at any party. By the way, I want to apologize in my response to your pic's ... I thought Sam was your daughter (I always add/delete words from things I read ... I missed the "grand" in grandmother.) Anyway, maybe an apology isn't necessary ... you do look young enough to have a daughter Sam's age!!!! Still "pittying myself here in Jersey", Joan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2005 Report Share Posted June 4, 2005 Rose I agree with you about high pitch noise, kids noises are a trouble, but noises like cartoons or Barney noises - GEEEESSHH get me out the room! It figures that someone has already written an official "what to do with duct tape book"! probably made millions from it too. The candle idea sounds like a good one, interesting. I like your labor story. I have had all of mine natural except the twins - not because I am brave and wonderful laborer - because I have been chicken of the epidural ever since the first one with the twins! I have also insisted to be totally alone, except for the nurses ever since the first one I had natural because I didn't like the "coaching" attempts, and just like to be able to "focus" and get this done. The nurses are always very good and like you say dont stand around telling you breath breath or anything. It sounds like your daughter had a great birth experience. My best one was my last one, my daughter . The Docs were great about this birth and I am so glad that I had the experience. I participated in this one more than any of the others, actually felt her head as it was being born, they put a huge mirror in front for me to watch, cut the cord myself, etc. It was all due to an attending that I had never met before who came in during the labor and just asked me how many I had had, when they told him it was my 6th - he said well come on then let's let her do this one right. He said yes that makes sense and stayed the rest of the time, made them bring the mirror and just did a lot of things differently. I loved that Dr. The Drs I had been seeing were in a bit of a panic the whole time I had been seeing them because I had only just come from Kuwait 4 weeks before delivering, was turning from breech to the head down several times a day, they discovered I was severely diabetic as soon as I get there, I was very ill - with NS but not dx at the time so no one knew why I was so sickly, there was just a lot of troubles and the Drs were wanting to do a Csection actually, since I was already vbac, and this was number 6 and they thought was going to flip in the middle of labor or something (she actually flipped during ultrasounds - then I refused a Csection, so they did a ct to see if my pelvis was large enough for her to fit and she flipped during the ct!! hahaha). Well anyway, sorry to share a labor story here. take care, Kim Quote Link to comment Share on other sites More sharing options...
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